Baby Theo

Visit to Hollywood Cemetery

2010-02-21T11:02:00.004-05:00

Yesterday, we visited Hollywood and spent 2 hours wandering around. It was beautiful day, warm and sunny, peaceful and healing. Here a few of the images.

Fourth Anniversary

2010-02-20T09:27:00.005-05:00

An event has happened, upon which it is difficult to speak, and impossible to remain silent.
~Edmund Burke

I am sad and heartsick. 4 years ago today my first born child died in my arms. He took his last breath. I held him as the last breath of life left his body. At the moment of his death, it was as if everything stopped. Everything in the Universe just stopped to witness the death, the passage, of this one little baby boy. Time stopped, the whirlings of the planets paused, for a split second that lasted forever--for an instant, and for an age, that is still stretching out somewhere inside of me--like the spaces between atoms--impossibly small and at the same time incredibly immense--everything, everything...stopped. My breathing, my heart, too, it seemed, stopped—but then, unlike my baby boy, my lungs involuntarily took in a gasp of air to remind my living body that it needs to breathe. Time began again. Theo was dead. I held him, his father held him. We bathed him, took his g-peg out, we dressed the area, dressed him, wrapped him in blankets and just held him. For a long time. Not long enough.
Taking him outside to the big car the funeral home sent over to pick him up, handing him over to the man who placed his little body on the stretcher—a tiny, child sized stretcher—how sad that have those—was the hardest thing I have ever done. Throughout all of my journey with Theo, the pain and exhaustion of a 36 hour labor, the confusion and fear of not knowing what was wrong the day he got sick, through the diagnosis, the surgeries, the chemo, the dashing of hopes of recovery, through the days and nights of waiting, praying, crying, the months of his dying, holding him as he breathed his last, through all of that-- giving his little body over to the funeral home man was the hardest thing. I had to turn away as the car drove off down the cold, dark street on that quiet, frozen February night. Through it all, of all the things I watched, all the things I saw, all that I faced and did not turn away from, never thought of turning away, through all of it—that was the one thing I could not bear to watch. I could not watch the big black car bear his body away from me. Later, at the funeral home, I wanted to see, and insisted on seeing his body, arranging his body myself in the tiny casket, his blanket, his toys, the pictures, the rosary, all the little things we placed with him. I was anxious and afraid that seeing his body would be terrible. But I was surprised (and also not surprised) that I felt relief when I walked into the too-bright fluorescent filled room and saw that the body lying there on the stainless steel table, was not Theo. It was the much loved and cared for body that had so very recently held Theo's bright spirit, but Theo was no longer inside it. That much was clear to me. The pain of his absence and the presence of the clear evidence of his death, was agonizing. But I knew without a doubt that Theo had gone on. I hope and pray--though my praying is very different than it used to be--that he is near, that he sees me, that he watches over us, that he is with me, with his father, with his little sister, with his grandmother and with his grandfather, and with others who love him. I hope he sees us and spreads his love over us all. I believe he is peaceful, that he is wiser and full of grace and love and that he is something greater than I could ever imagine. This is how I imagine him to be. But he is my son and my heart aches for him and wants him to be here with me.

I love you Theo, I miss you.

Grieving the Death of a Child Through the Holidays

2009-12-28T14:34:00.001-05:00

Making it Through the Holidays While Grieving the Death of Your Child
By Karla Helbert, MS, LPC

The pain of grief after the death of a child is without a doubt, for those of us who walk this journey know, the most difficult terrain to navigate during any time of the year. The holiday season creates even more obstacles for the bereaved parent. Holidays are supposed to be a time of joy. Feelings of gratitude, happiness and togetherness abound. These feelings seem nearly impossible to muster when the isolation and sadness of grief of losing your child is pressing in on all sides. It can be even more difficult to cope when everyone else around you seems so happy, and perhaps expecting or wishing you would be too. Key to making it through the holiday season is acknowledgement that you have changed, your life has changed, your family has changed, and your holiday season will be changed as well.

Bereavement is the state of being deprived of, or having lost, something precious to us. Grief is an internal reaction, or feeling, in response to that loss. Mourning is the outward expression of the feeling of grief. To mourn is to openly acknowledge and work through our feelings of grief. Actively mourning during the holiday season can be a way of helping us to cope with our grief and bereavement.

Particularly for the newly bereaved parent, openly acknowledging your grief and pain during the coming holiday season can help you make it through, and perhaps even help you find some comfort and joy. Some ways of doing this include finding ways to honor the memory of your beloved child while being honest with yourself, your family, and friends about what you need during the holiday season. Spend some time thinking about your family’s traditions and practices during the holiday season and imagine what those will be like this year without your child. This exercise will be painful, but it will help you to decide what you may need to make it through, and what things may need to change, for the fast approaching holiday season.

Make a plan. Know, without a doubt, that the holidays will be difficult and painful. Rather than attempt to do what you have always done, make a plan to do some things differently. Make a plan that will include your child; his or her name, memories, stories, hopes and dreams, in conversations and activities. Acknowledge your child's continuing presence in your life, and your love for him or her, as well as the pain you feel due to his or her absence. Create new traditions, such as lighting a candle or saying a prayer, for your child at a particular time of day or on a particular day of the week. You can do this on your own, at family gatherings, or both. You might wish to donate to a charity in your child’s name, plan a visit to the cemetery, watch a favorite holiday movie, listen to favorite songs, engage in activities that honor his or her life and memory.

You may wish to develop more than one plan. Plan A might include joining in family celebrations, plan B might include acknowledgment that, if plan A is too difficult, you will give yourself permission to stay home, or to leave early. Let it be ok to change your traditions and activities. In some cases, you may decide to cancel the holiday altogether. Let this be ok too, if that is what you need. Everyone is different and we all grieve and mourn differently. Some bereaved people find comfort in the routine and traditions of the holidays, while others simply feel they cannot face the holidays this year with so much pain and sorrow in their hearts. Whatever your personal needs, have a plan for how you will manage the holiday and plan for a specific activity that you will do on the actual holiday, as well as at important family gatherings. If you decide not to go with the plan you have made once the holiday arrives, this is ok too, but do have a plan. Bereaved and grieving people who do not plan for the holidays and other important days can have a much more difficult time getting through those significant times than those who do have a plan—even if they decide not to follow the plan.

It is far better to prepare for the holidays than to pretend they don't exist. Even if your plan includes pretending they don't exist, having a plan will help you through. It is true that the day is only a number on a calendar, but our culture is filled with symbols, advertising, Hallmark specials, decorations, merry makers and all number of reminders which are tied to our emotions and memories. Our inner experience is nearly impossible to escape. Putting on blinders rarely is the answer. Do you have plans for honoring, remembering and memorializing your child this holiday season? Do you have a plan for maintaining your own well-being during these next few months? Do you have support and an outlet for sharing your thoughts and feelings? Do you have people who will listen to you without judgment or advice about what you "should" or "should not" do? These questions all bear thinking about and the answers will help you make it through this difficult season.

Along with giving yourself permission to do things differently, give yourself permission to have some pleasure as well. It’s ok to laugh or smile, even through your sadness. Those things do not weaken your connection to your child, neither do they mean that you do not care or that you are not grieving.

Our children will forever be a part of our lives, whether they are physically present or not. Learning how to navigate not only the difficult terrain of the holiday season, but the landscape of the rest of our lives, is sadly, part of the life of a bereaved parent. Having a plan will help. I wish you peace for this upcoming season and hope for some comfort, through this difficult time.

Karla Helbert, MS, LPC

Some helpful online resources:

The MISS Foundation
Bereaved Parents USA
Compassionate Friends
KotaPress
http://stockingfortheo.blogspot.com

Anniversary Day

2009-02-20T08:45:00.003-05:00

February 20, 2009

To My Beautiful Baby Boy:

Dear Theo,

Today is the third anniversary of the day you died. It has been a difficult winter. It’s hard to believe it’s been three years. But as always, in so many ways, it also seems like yesterday. When I think back now, three years since the day you died, so peacefully, and with so much dignity and bravery, sometimes it’s hard to believe it all really happened to us—to you, to me, to your father, to our family. Obviously, I know it happened, but sometimes I just can’t believe that we went through it all. That something so terribly awful happened to us.

While we were living it, it seemed normal. It was our life. I remember writing about that in this blog—the normality of it all and how sad that was, how wrong it seemed that such a terrible, heartbreaking set of events could become normal. Now I feel, I suppose, removed enough from the immediacy of it all that I can look back and think to myself the same thing that so many other people have thought, that so many people have asked: "How did you do it?" I couldn’t even begin to count the many times people have asked me that question. Or how many times I have heard the similar sentiment, "I don't know how you did it.” I don't know if people really expect a response when they say those things, probably not. I think people generally ask or say those things for a few different reasons, but not because they are really looking for an answer. I think they say those things because they are thinking aloud, wondering how in the world a person could do something like that. How in the world could some one take care of their dying baby, hold that child close as he takes his last breath, and continue to go on living what seems like, to most observers, a fairly normal life. They themselves cannot imagine what it would be like to go through something like that. They don’t want to begin to try to imagine such a thing. And they cannot fathom the reality of actually living it.

I don’t blame them for that. I can barely fathom it sometimes. The reality is though, that none of us ever knows what we will be able to do when we faced with the task of doing something we had never imagined we would ever be required to do. You do what you have to do. I remember sometimes becoming very upset at those sorts of comments—“how did you do it...I don’t know how you did it…I would never be able to do it…I could never survive it”—especially that last, feeling as though the implied or subconscious meaning might be that since I was able to do it and survive, maybe I wasn't a good enough mother. That perhaps to others, my surviving was somehow evidence of my not caring as much as someone who might fall to pieces, someone else, who faced with such devastation, might just die themselves, someone else whose life might stop with the death of their child—but I know that isn't really what they meant.

I think now that our living it, being with you as you lived it, and being with you through your dying, mine and Jamie’s determination to be with you in the moment, every moment, as fully present as possible, our determination to make you our sole focus—and our soul focus come to think of it—is what a parent is supposed to do. We did everything we could to help you have the most pain-free, love-filled and peaceful life and death possible. The only way to have done that was to be fully present, to survive it all with you and to keep on surviving after you died. And not merely surviving, endeavoring to live fully the kind of life that you would wish for us.

Now three years out, thinking on what happened to you, to me, to all of us, feels surreal. It did then too, but in a very different way—then, it felt like a suspended kind of reality, a place where, for us, time and no-time existed at once. In one sense, we were kind of slaves to time—on the clock, giving medicines and formula at specified times through your feeding tube—on the calendar, as the major events of nurse visits, surgeries, follow-up appointments, pharmacy visits, home health deliveries, became major events in our lives—and of course, ultimately living under the specter of the unknown when. Waiting and wondering when and how and what your death would be like. It felt so strange, the way our life completely and totally changed focus as the rest of the world went on as usual. Just going to the grocery store where there were people buying food for dinners for families with children who were not dying, where they talked about daycare and what happened at school, and where the cashier smiled and said, “did you find everything you need today?” and trying not to cry when she asked, was a completely surreal experience. And on top of it all, was a sense of no time—of being suspended in time, of being in our own cocoon of no time at all, just being and doing until.

Thinking of it all now, it seems incredible that we actually lived through it. Sometimes when I think of it now, I feel such deep pain in my heart for what we all went through. I feel a kind of amazement that such a thing happened to us all. Three years after your death, we still go through pain, we will forever experience the grief of your absence from our lives. But thinking retrospectively about what we experienced during that time is now all on its own, a separate kind grief. A different grief, punctuated by the memories and thoughts of what our day to day life was like while you were sick and the specific memories of the day of your death and of how things were for us after you died—the moments after, the funeral, the days, weeks, the months after.

The trajectory that grief takes, I think, provides a natural kind of curve that gives us the ability to look back on what has happened with a different perspective than we had while we were in the firestorm of the actual events and in our early grief. Time has passed, and with it, a kind of smoothing over of the open wound of grief has occurred. Distance from the immediacy of that kind of raw pain allows me to see it and think about it differently —not exactly as removed from it , because those moments are still as clear and accessible as ever, and at times can bring on the same crushing pain, especially when I don’t expect it—just differently. That different kind perspective I have now allows me to feel a kind of compassion and tenderness toward who I was, for who Jamie was, in those months of such intense pain. Sometimes I can look back, and like others on the outside looking in, think, "how did we do that?" When I think on it, I can now allow myself to feel an additional sadness, not only for you and what you went through, not only for the awful fact of your death and being without you, but also for my own heart, my own life, for Jamie's life. That we sustained such devastating, horrific pain, hurt, loss, heartbreak during the months of your dying, when you died and after your dying—it is just so very sad, so horrifying, that such a thing happened. And it happened to me. To my son, to my husband, to my family.

I tell myself, quite often, that there are much, much worse things that can happen, and do happen, to millions of people all over the world, every day. That when our specific situation is held next to so many others, we have so much to be grateful for—the love, support and the care we received, the peaceful knowledge that you knew nothing but love from those around you, that you died peacefully, in a safe and warm place, surrounded by our love. I try to gain perspective this way, to not get mired down in feeling sorry for myself that such a terrible thing has happened to me, that my firstborn child suffered such a fate. But I also have to remember that to deny the pain of it is to minimize the gravity of it all and takes something away from the beauty and magnitude of your life and your death. The fact that other people and families suffer horrific events does not take away from what you went through, what we went through. Neither does it take away one piece of the pain of losing you. I can and should allow myself to feel compassion and sadness not only for the fact of your loss, but for the fact that we endured it and continue to endure it. You were born and we were happy with our little family. We had you—in all your beauty and sweetness—and then our whole world just fell in on top of us. It is so painfully sad that you had a tumor the size of a lemon in your little baby brain, so painfully sad that you endured seven surgeries. It is so painfully sad that your entire brain was destroyed by the very things we all hoped would help to cure you. It is so painfully sad that you endured all of that and so very painfully sad that you died. And so painfully sad that we are left to grieve your absence from this world for the rest of our lives. Sometimes the thought of it all is just so sad that my heart could break a million times over—and has. That my heart can continue to break, over and over, and still continue to beat, to have the capacity to love, to be open, is an amazing thing. That is what hearts are meant to do I suppose. It makes me think of the quote by Andrew Harvey that I used to have on the wall in my office—before you were even born, “If you're really listening, if you're awake to the poignant beauty of the world, your heart breaks regularly. In fact, your heart is made to break; its purpose is to burst open again and again so that it can hold evermore wonders.” Yes.

I can see how easy it could be to slide into a denial of grief—to push it aside and under, bury it beneath a bevy of busy days, loaded work schedules, errands, responsibilities, the day to day business of living. But I know that somehow or other, grief will wind its way to the surface if not acknowledged and brought out. Unacknowledged grief will fester like a splinter under the skin, and eventually the heart and the psyche, as well as the body, will find ways to spit it out. I am learning that as time goes on, the tasks of grieving come to include finding ways to continue to acknowledge our grief as well as to acknowledge the changes in how we grieve. Part of that grief should come to include the grief of losing our own innocence, it should include feeling compassion, sadness and loving-kindness toward our own hearts, that we experienced such pain, and that we will continue to experience it as it changes forms throughout our lives.

I am grateful to have an unwavering conviction that you are with me still. That one thing is the only conviction of spirit I can truly count on. There are times when that fact alone—the certain knowledge of the continuation and presence of your spirit with me and around me and throughout the Universe—is the only thing that gives me spiritual comfort. When nothing else in the scheme of creation seems to make sense to me anymore, there is the knowledge that you go on, you are with me and you are everywhere. Baby is Everywhere. Your continued presence and existence is the one thing that allows the renewal of anything resembling my faith in God. The knowledge that you go on, that you continue to exist, that you are always with me, makes me believe that God must be as well, in some form or other. And that knowledge brings me hope and comfort.

I love you and miss you today and every day. And I am so thankful to be your mother.

Love Forever,
Mama

Two Years--February 20, 2008

2008-02-22T10:37:00.008-05:00

Wednesday was the two year anniversary of Theo's death. It was a peaceful day. Both of us took off work and spent the day together.

It's strange, I feel more sad today, and did yesterday as well, than I did on Wednesday. This entire journey has been and continues to be full of unexpected turns, ups and downs, twists and changes. You just never know how you might feel.

Certainly, this anniversary was nowhere near as difficult or heavy or painful as the last--the first. But that is ok. I felt bad for a little bit that I was not more upset. But I also know that Theo would want me to be ok.

Everyone is different in how they navigate the journey of grief and loss. For some people the second anniversary can be even worse than the first. I can tell you that this Christmas was terrible for me. I was not expecting it to be so terrible, so it was much worse than I thought it would be. I don't know. I guess I thought that it could not be anywhere near as bad as last Christmas--2006--our first without him. Christmas 2005 was also difficult--he was here with us, but so sick. His first Christmas, his last Christmas. Then 2006 brought the first without him. I think I thought--or didn't think at all maybe--that 2007 would not be so hard. But it was. So, I was maybe a little more mentally prepared for this second anniversary of his death.

Last year on February 20, I stayed home most of the day and evening. Just thinking about Theo, looking at his pictures. I relived a lot of the feelings and memories of the day he died. What it was to hold my baby and watch him take his last breaths, to bathe his body, dress him, wrap him in blankets. To give his body to strangers to take to the funeral home. I did not need to relive those memories this year. Another thing is that once the first year has passed, you no longer are able to say, "last year at this time we....." There was no watching the clock this year. That is a good thing in some ways and a very sad thing in others. Somehow in that first year, the ability to say, "this time last year.." feels like a connection that still exists. But with the passing of that first year, it fades into the past.

What does not change is that we will never see our sweet boy grow up. We will spend the rest of our lives without knowing what he would have grown up to be. Never knowing what games he would like to have played, what his favorite foods would have been, what would have made him laugh, what he would have liked or hated about school. We will never meet his friends, his lovers, his spouse, children he may have had. Never see him play sports or a musical instrument, see the first picture he would have drawn, never see him run or jump or drive. Go to prom, graduate, go to college, get a job, get in trouble, get out of it. None of that will ever, ever change. And most days, those things are not on my mind. Theo is always in my heart and if not on my mind, very close to it. I don't think of him every minute--and that is ok. I can still remember what it felt like the first time I realized I had not been thinking of him. I forgot! It was a horrible feeling. I thought it made me a bad mother. How could I forget? But I have never forgotten. All the thoughts and memories and love are always there. Anytime I want to I can open up the boxes which hold the precious memories of him--his scent, every little fold of skin, his laugh, his facial expressions, the shape of his body--his feet, his toes, his long fingers, the shape of his head--before and after surgeries. I can still feel the little indentation at his temple, where my lips fit just right--his kissing spot. I have the same spot at my temples. All of the memories of hospital time, nights up with him after he came home, peaceful times holding him, scary times, sad times. Every moment is stored away. It takes a lot out of me to open those boxes--but I know where they are and what is in each one. Sometimes I lay in bed before I sleep and go through some of the sweet ones. All of it is there.

No matter how many years pass, they will all be there.

I kept his candle lit the whole day when were home. My good friend Jessica sent me a beautiful bunch of white orchids, Meg and Erich and the boys (Jamie's sister and husband) sent us a pretty bunch of springtime flowers too--with a dragonfly in them. It's so good to know other people remember him. We visited the Angel of Hope statue at Hollywood cemetery and released balloons to mark the day. We visited the graves of other children and babies that are close by and left bunches of daisies. We went out for a lovely dinner at Bacchus where we were married. We spent the day missing our son together. Just like every day. But that day was special. It marked another year without him. But the day was peaceful. And I know that Theo's spirit was with us. Just like every day. But this day was special, different, because it marked another year without him here with us. The second year is certainly full of hard, heartbreaking moments. Sometimes made more difficult because you are not necessarily expecting them.

The picture above is a still photo taken from Theo's memorial DVD. Jamie has posted it on YouTube. Because YouTube has a 10 minute time limit on videos, we had to do 2 videos. The first one is 9:14 and has the first 2 songs, and goes up to age 3 months, to the weekend before Theo got sick. The second is 2:29 and is the last song of the tribute and includes photos of after surgeries and after we came home from the hospital.

Please feel free to watch. He is beautiful.

This is the link to Part 1:

http://www.youtube.com/watch?v=1x9lt4_Fb0U

And Part 2:

http://www.youtube.com/watch?v=0LJDqXLw-3I&feature=related

August 20, 2007

2007-08-20T11:04:00.001-04:00

August 20, 2007

Today is two years since the day Theo first got sick and we received the diagnosis of a brain tumor. I think it might be hard for some people to understand, but for me, this significant day is in many ways, worse than the day he died. It’s kind of a two fold day. It is the anniversary of the day our lives changed forever, a day of immense trauma and fear, the day that marked the beginning of such pain and sadness, but as he died exactly 6 months to the day of diagnosis, on February 20, 2006, August 20 also always will mark the half year of his death anniversary. So, it has been two years since the day we were told our baby had a brain tumor, one and a half years since he died.

Yesterday, we repeated our ritual begun last year, taking down to the PICU goodies and treats to thank our nurses and staff for their kindness, their support, their genuine concern and expert care throughout the month that we were there in the hospital—most of it in the Pediatric Intensive Care Unit. We saw three of the nurses who worked with us, Nurse Judy who is a master’s level RN and is like everyone’s mother, Nikisha, so loving and caring toward Baby, and Debbie, who was just starting out while we were there. She learned how to be a good PICU nurse while caring for Theo. We left a cake and a bag of goodies for all the staff there. One day, none of the nurses we know may be there, but it’s ok. The nurses who are there will be carrying on the kind of work that makes the lives of families going through such pain and heartache just a bit easier. We also saw our favorite security guard Officer Gail who gave us hugs and had a big smile for us. I can’t say it was a happy visit, but it made us feel good to be able to say thank you. After the hospital visit, we went to breakfast and then to visit the Angel of Hope statue in Hollywood Cemetery—the beautiful bronze angel who looks over all babies and families who have lost them.

I didn’t think today would be so bad, last year was very difficult, watching the clock, going over the events as they happened one year prior. This year does not hold those kinds of sequential remembrances—though if I let them, the memories could come. They are always there. I slept badly, with worried dreams, storms raging through the night. It is hurricane season. On the way to work, as the radio talked about the progress of Hurricane Dean, I remembered that other hurricane that struck while we were in the hospital with Theo. I remember driving and listening on the radio to the damage that kept coming, more and more homes and families lost, people dying, pets dying, everything, everything they had washed away in the levee breaks in the wake of Katrina. I felt numb listening and I wondered how much more I would care if my own whole world hadn’t been falling apart right then as well. Hurricane season. It was almost as if our lives were hit by a hurricane as well. The big difference between Theo’s death day and the tumor diagnosis day is the trauma, the surprise of the impact, the sudden devastation, the washing away of a dream of a lifetime in the space of seconds. How your life can change in just an instant, while you’re vacuuming the floor.

August 20th was filled with trauma after trauma. The hurricane hit and we tried to get through all the damage without losing our sanity—the diagnosis, the brain surgery, the ventriculostomy (another surgery), the constant fear and stress of watching mounting ICP numbers (intracranial pressure), the monitors, the EEGs, the increases and decreases of seizures, the changing of the medicines, trying to assess the damage long term to our baby, to his perfect little brain, waiting to hear what kind of cancer it would be, getting through the first round of chemotherapy--painful, so painful to watch. The ground beneath us was feeling a little bit more solid, we were adjusting to these changes, understanding more about the situation, assessing the changes that would be made to our lives, to Theo’s life. Then the levees broke. The complete neurological devastation occurred. Never would we have the same baby again. His entire cerebreal cortex was destroyed. Never would he learn to walk, talk, probably never be able to eat on his own, probably never be able to do anything for himself. The tumor was very aggressive, most rare, prognosis very bad. To protect what we had left, we took our baby home, to protect him from any more pain and suffering. We wanted to make him comfortable, help him feel peaceful, loved. No more brain surgeries, no more nasty chemotherapies. No more pain if we could help it. When he died, we were there, we were expecting it, we were loving him and holding him and protecting him from the ravages of any more storms. The day the tumor hit, we could protect nothing. Our whole lives, our whole family, changed in an instant. When the brain damage broke, hopes were leveled, our hearts crushed. We could only form a protective circle around our baby, around our little family together and try to make it through as best we could.

That day, August 20, 2005 changed everything forever, ripped through our lives and hopes and dreams like the worst storm we could have ever imagined. Two years later, we are still re-building. We honor our son’s life in every way we can, we try to find peace in his death, gratitude in his life. But in a small corner of our minds, we will be in that hospital room forever, feeling scared and powerless, praying, crying, bent over our sweet, tiny boy in such a big hospital crib bed, the iron bars cold and hard. Trauma sticks in your mind like snap-shots, click, click, click, every now and then finding ways of bursting through the small bit of peace you may have found in it’s aftermath. Those snapshots are always there. The way to get through life with those snapshots still in the picture-book of your mind is to try to hold the good parts closer, examine the memories of peace and love in the forefront. Recognize that the trauma happened, somewhere in your mind it may still happening, but also never to forget the love that happened. Remember that following the trauma, sometimes right in the midst of it, was peace, love, support from friends and family. And even if the traumatic moments have left their deep impressions, so have the good, the love, the peace and even the hope. The hope may not be what we initially hoped for, but a new hope can come in it’s place: Hope for continued love, moments of peace, balance. Hope for the ability to live my life as my child would want me to. Hope for good. Because in a world where hurricanes can wipe away so much in an instant, there is also the potential for peaceful waters, for lush gardens, for soft breezes, for the hearts of people who love us and support us, for life and love and spirit that goes on after the storm has passed.

Please do visit Theo's new memorial web-site at www.babytheo.virtual-memorials.com

New Tattoo

2007-07-04T13:41:00.000-04:00

I went yesterday evening to get my new dragonfly tattoo. It was done by Josh Brown at Absolute Art in Richmond.

I was really nervous. This is not my first tattoo, but to me, getting tattooed is a very ritualistic kind of act. All of mine have meant something, marked a milestone, emotionally or chronologically (my last one was my 30th birthday tattoo--also by Josh).

This is the one for Theo. I thought I might be crying or upset or overwhelmed emotionally. I also knew it would hurt--and it did--but I thought to myself, "it can't hurt more than being without Theo"--but it is a very different kind of pain. I discovered though that getting a tattoo doesn't hurt anywhere near as bad as labor!!

Jamie went with me and held my hand the whole time. I didn't cry at all, I felt really happy--probably the endorphins kicking in. I am really happy with it though. I love it, it is really beautiful. I wish it was just a tad higher, but I also don't want others to be able to see it if I bend down or whatever. This one is very private and personal. I wouldn't want random people to be just staring down my shirt at it. As it is, it is placed exactly in the middle of my torso--between my breasts, where he fed, just above my belly where he grew and just under my heart, where he will always be, now and forever.

The photos of the dragonflies were taken by Jamie in the park near our house.

Theo's Birthday

2007-06-07T22:28:00.000-04:00

Here is Theo's stone. We placed it on his grave on his second birthday, May 26, Memorial Day weekend.

The photo with the tree is the view of the cemetery facing south. The big tree is a hundreds of years old hemlock that has been there before anyone was ever buried there.

I designed his stone and had it made by Paul West of West Memorials in Memphis TN. He really does beautiful work. When I drew the design just after Theo's funeral and started looking online for someone who could make it for me, I found his website and was just amazed. The stones and memorials he makes are all individual works of art honoring the people for whom they are made. I am really happy with the way his stone turned out. But in the process, all kinds of things happened--glitches here and there. Paul's business has gone through a lot of changes, building a new space, problems with contractors, set backs, several things out of anyone's control went awry. The raw chunk of stone itself came from Russia and there were problems with that supplier and when it came, it was about twice as big as it should have been, then when the stone was finally finished--2 weeks after the scheduled delivery, it wasn't exactly right--the shape was wrong--too square looking, not what I wanted, so I really started to panic that it wouldn't be done in time, even though he promised me it would and he came in over the weekend and did it himself. He sent it out with 2 day shipping from Memphis and we still had a week to get it in place by Theo's birthday.

Because Theo is buried in our private family cemetery, there are no official caretakers, just us, so there is not an office or anything like that, and the stone had to be delivered to a business. So the original plan was to have the stone delivered to the bank where my mother works and my cousin's husband was going to pick it up and take it to the cemetery. But because now twice as big as it was originally supposed to be--which is fine, I really don't mind that it is bigger--but because of the shape and size, it weighs literally a ton--2000 pounds. The man who was delivering it could not move it off the truck without help and my original plan wouldn't work either because there was no one there at the bank who could move it either. It couldn't be moved without serious equipment. When my mother called me with that news, I just totally broke down. At first I thought we could get help from Carty's funeral home, the wonderful people we used for Theo's funeral, but it was bought out since then and they moved to Kentucky. By the Tuesday before Theo's birthday, it was too late to call and have them help and because of state to state regulations, the Tennessee company was only authorized to deliver in Virginia anyway. She couldn't get hold of any other funeral home directors. The driver had taken it back to Tennesee to the trucking place (only just across the state line, an hour away, not all the way to Memphis, but still). I was just so upset. I could not stop crying for about 45 minutes, even when I tried and tried. I didn't know what she was going to do, she didn't know what she was going to do. I have handled everything for him, planned everything, managed everything, and I could not fix this for him because I was not there. I didn't know what to do and I was convinced it would not be there for his birthday, or that somehow we wouldn't be able to get it to the cemetery. I had to leave work early and still couldn't stop crying. I have not cried that much in one day in I don't even know how long. My eyes were swollen up and I was just exhausted by the time I got home. Everything is taken care of now and the stone is on his grave. My mom called in a favor (she said, "I'm like the mafia", which was kind of funny). The man who moves repossessed cars for the bank and has equipment to move other kinds of heavy things did it for her and would not accept any payment. He told her, "that could be my grandbaby's stone". I am so grateful for his help.

We saw it for the first time the day before Theo's birthday. We drove straight to the cemetery when we got into town. I didn't know what his birthday would be like this year. I didn't think would be as difficult as last year when all I could think of from the 24th through the 26th was, "this time last year....this time last year...this time last year", re-living every second from my water breaking until 12:02 midnight on May 26th. I am continually surprised by my feelings, by what is going to be a trigger--or when there aren't particularly any triggers. I am trying to have no expectations and just go with whatever--but sometimes I find it very hard. When I think--"He would be two years old", I can barely believe it. It seems so long ago and at the same time, just like yesterday, that he was born. Had he lived, he would be walking and talking, playing and getting into all kinds of things. But he isn't. And that is just the way it is. And the pain doesn't go away. It is not as raw, but I didn't expect a day like I had the day the stone was delivered. Sometimes I still just can't believe that this is my life, that my child is dead. Sometimes I can barely believe that he was born, that he had a brain tumor, that he went through so much in his short little life. Sometimes it feels so far away that it's almost as if it happened to some other version of me in some parallel universe. I can can hear a voice in the back of my head whispering sometimes, "Did that really happen?" But yes, it did. No matter how surreal it seems. And then there are days that it is so clear to me that it, yes, it happened. Theo and his birth and his life and his death are more real than anything else that has ever happened to me or ever will again.

When we got to the cemetery that Friday afternoon, seeing the stone there wasn't a shock to me or a reality crash or anything like that for some reason. It looked as if it had always been there, just waiting for me to come and see it. I felt peaceful seeing it there. Sad, but peaceful. Maybe because I've spent a lot of time talking back and forth with Paul who made it for me and picturing it and then seeing pictures of it earlier before it was sent. It looked just perfect (well, you know--as perfect as your child's gravestone could look).

Saturday morning, Theo's birthday, Jamie and I went up to the cemetery together and placed the stone bench, the stepping stone, the pinwheet and the "birthday cake" from his Granna. The top of the cake is a removable music box that looks like a miniature cake itself and holds a real candle. We spent time alone there together, had a toast to Theo with a special bottle of wine we brought and sang "Happy Birthday" to him. We each wrote in a beautiful birthday card Jamie made for him. About an hour later, my mom and dad and Jennifer and my grandmother came. They all had a toast to Theo with us and we all spent a little more time there together. After that, we went to my other grandmother's, Granny's, for a cook-out where most of my family was there. It was interesting because we didn't talk much about Theo, but everyone knew it was his birthday and gave me hugs, told me they had seen the stone or asked to see the pictures we took, but that was about it. It was nice. It was like everyone was acknowledging him, supporting us, but it wasn't sad, everyone gave me space--but not too much. It was a really nice day. When we cut his birthday cake, several people came in and sang Happy Birthday to Theo. My cousin's little boy Trevor who is 15 months old, blew out the candle--and that was ok. It seemed reallyappropriate for a little boy, his cousin, to blow out the candle for Theo instead of one of us. Several members of my family signed the birthday card Jamie made, some didn't and that's ok too. All in all, it went much better than I thought or expected it to. I felt mostly ok all day--I think having Jamie with me, having people around me who I know love me, who I know love Theo, made it easier.

Happy Birthday to my Baby Boy~~

One Year

2007-02-21T00:26:00.000-05:00

At midnight, when the calendar turned to 2/20/2006, the two of us lay on either side of our 9 month old baby boy as he was dying. All three of us, together, on the futon in our dining room turned hospital/bedroom/nursery/temple. That whole weekend we had all slept downstairs together. We didn’t want to be away from him for a second. It was awful waiting for him to die. We had already been waiting 5 months, but the waiting over that weekend was the worst. I had planned his funeral weeks and weeks before. We had gotten our clothes ready, his clothes ready, his blanket, what stuffed animals would go with him, we had written him letters we were going to read at the funeral. All arrangements were made. I knew everything that was going to happen to his body. I knew I wanted to bathe him and dress him afterward.

Six months after the tumor was found in his brain, five months of caring for him 24 hours a day, every moment dedicated to him, to his needs, to his care, always waiting, wondering how it will be, when it will be, we were waiting for that final breath, wondering if we would drift off to sleep, if he would drift off to sleep, if he would be agitated, uncomfortable. How much longer would it be? There was nothing we could do but wait. And hold him and love him. That’s all. Those five months of having him home were complete devotion, moving a meditation, prayer in action. One of the forms of yoga is bhakti yoga, the yoga of devotion—of actions toward others translated into pure love. Focusing love and devotion on the well-being of others in such a way that those actions become worship of God. In that devotion to others, one worships the Divine within that being. Theo was the object of our bhakti love. Our object of worship. There was nothing else we could do. There came a point when I could no longer pray. My acts of loving and caring for him were my prayers. Love him, hold him, care for him, soothe him, be with him, breathe with him. Give him medicine—morphine, methadone, chloral hydrate, the fentanyl nebulizer. Watch his breathing, watch his movements, listen to his heart.

That long night, I slept some, Theo slept. I don’t think Jamie slept. Each time I woke, he was still breathing. Neither of us wanted to be away from him, to be anywhere but with him when he took his last breath. Jamie's mother died on the day Theo was born. He had not been there when his father died, he had not been there when his mother died. He promised himself that if he possibly could, he would be there the next time someone he loved was dying. He made that promise to himself the day his son was born. He had no way of knowing that Theo’s death would be the first keeping of his promise. I was there when Theo took his first breath, I would be there when he took his last breath. I would hold him, love him, help his death to be as peaceful and loving as possible. We wanted only to be there with our son.

When he woke early that morning of the 20th, he was not comfortable, he was agitated, he couldn't rest. We didn’t feed him his regular morning feed. Only a small bit of formula with his medicines. Phenobarbital, lorazepam, morphine, methadone. The sun shone, the clock ticked. We watched him, we held him. We smoothed his forehead, we propped him on pillows, we held him. We played music, we sang to him, we cuddled next to him. we held him. We gave him his medicines. We waited. He breathed laboriously, he breathed shallowly, he took big breaths, held them. He stopped breathing around 2:30 p.m. No breathing, stethoscope gave no heartbeat. About a minute went by. We didn’t know what to do, even though we had every thing planned. Then he gasped air, his heart was beating. Stunned, we held him, kept holding him, waiting. I watched the clock. When would it be? We were so, so tired by the time February came. I think Theo was tired too. The whole week before he died, he was very agitated, fussy, not feeling well. On that Friday, I didn't think he would live through the night. But he lived through the whole weekend, through most of Monday morning and afternoon. He was on so much morphine and methadone by then it was crazy. The owner of the pharmacist called me about a month before Theo died, panicky, thinking the script had been written wrong. I told him, “No, it isn’t written wrong”. I told him why Theo was taking so much medicine, such high doses, and he just broke down and started crying on the phone. The doctors told us about a month before he died that there was no way we could give him too much medication. He could have as much as we wanted to give, as much as he needed to be comfortable.

Holding him, looking at him, I knew that soon, he would not be here anymore. What would it be like? I didn’t know for sure. I had been with people when they had died, no babies though. Not my child. I had questioned the doctors about what to expect, I had read up on what would happen to his body after death, I researched information on embalming and the processes his body would go through. I had everything planned, who to call, what to do. But what would it be like when my child actually died? His breathing got slower and slower. I could barely breathe myself. It felt like I had to keep reminding myself to inhale, exhale. At 3:33 p.m., Theo took his last breath. He did not breathe again. I was holding him when he died. It was quiet. My heart felt as if it were squeezed into a tiny thimble. Tight, compressed. My stomach felt like one of those high bouncy balls you can get out of machines for 50 cents. Hard, small, condensed, like a rubbery pit in my gut. Everything, everything stopped. I could believe that time stopped, the earth may have stopped turning, the stars may have paused to witness this momentous occasion in our little universe on Sheppard Street. To witness the death of this baby boy. I can remember looking down at his sweet face, the weight of his body in my arms, the warmth of him next to my chest, my belly. He was dead. It was over. All that time, the months of fear, pain, anxiety, hospice, equipment, trips to the doctors, hospital, scans, MRIs, the medicines, the tumor growing, slowly taking over our lives, it took away our future with our son, it took over our lives for all that time. Now Theo had escaped it. But we were left here without him. Still are left here without him. A strange numbness, an inertia, a feeling of unreality set in. I just looked at him. Hot tears slid out of my burning eyes and down my cheeks. Jamie asked to hold him. The spell broke. I didn’t want to give him over, but I did. It was his father asking.

Together we gave him his bath, dressed him. His g-tube began leaking a greenish fluid—mostly his liquid medicines still in his belly, and his stomach juices. I packed a lot of cotton 2x2 squares around it, folded one of his little bitty cotton t-shirts that didn’t fit him anymore and taped over it with his bandage tape that we kept for the dressing around his tube. I didn’t want the juices to come through his clothes. We wrapped him up in a blanket and starting calling people. Called our hospice nurse. Called my mother, my father. My mom asked me if I felt his spirit leave when he died. I didn't --but I think he wasn't totally in his body when he died anyway. I think he was in and out starting that previous Friday evening. I don’t think his spirit was really in his body by the time it stopped working. I think he was already out, and there all around us in the room. It felt like that for a long time. He felt close by even when his body was growing colder. My dad and Jennifer wanted to come over. I called our funeral director who had already arranged for some local funeral guys to come pick him up when he got the call from me. I said to please have them wait until about 6:30. We needed some time with him. I think I held him almost the whole time until they came. Our hospice nurse came over even though it was her day off. She wanted to see Theo. She said, “I would never say this to anybody else, but I know you won’t take it wrong. I have seen a lot of dead babies, and this is the most beautiful dead baby I have ever laid eyes on. He is so beautiful”. And he was. He was beautiful. She held him for a minute. Jamie held him again. When the funeral men arrived, we had just all had a round of bourbon shots to toast Theo. God knows I needed a drink, we all needed a drink. I knew they thought we were a strange bunch. I introduced them to my dead baby. They didn’t know him, they didn’t know us. They didn’t seem very comfortable at all. But they brought me a rose. That was a nice gesture. I wanted them to know something about him. They were going to be doing the embalming here in Richmond. He would be transported the following day to my home county, 6 hours away, for his funeral and for his burial in our family cemetery. You can’t have a dead person transported without embalming them first, so no matter where a funeral is to be held, the “initial procedures” are done locally. I hadn’t known that until I started making arrangements. There was a lot of stuff I didn’t know until I met Theo. But I wanted them to know him. Who he was, how he died, who we were, how much we loved him. When they touched his body, when they undressed him, when they prepared him for his burial, I wanted them to know who he was.

I carried him out to their car. Thankfully they didn’t have a big hearse—just a big SUV. By then, his ears were pooling blood and turning purple inside. He was getting much colder, more quickly. They made me cover his face with his blanket as we walked out the front door. It’s against the law to have a dead person’s face showing in public. I didn’t know that either. I laid him on a tiny child sized silver stretcher, and they buckled him onto it with black straps. They closed the hatch. I think the sound of that big hatchback closing down in the dark street—Slam!—was one of the worst sounds I have ever heard. I turned and walked away from the car and into the house and didn’t watch it pull away.

Spending that night in our bed together, the house empty of Theo, was so very strange. We hadn’t slept together in the bed in nearly 4 months. He was more comfortable downstairs for some reason, so whichever one of us was going to work the next day would sleep in the bed upstairs and the other would stay downstairs with Theo. We slept apart almost every night during those months. One of us was with him 24 hours a day. When I stayed up with him I usually stayed awake until about 3:00 a.m. and would wake up around 6:30 am to give him his medicine. His breathing would change when he woke up. It woke me faster than any alarm clock. We slept together the night he died, alone in the house together. The house felt empty, we felt empty.

The next time I saw his body was in the funeral home two days later. I knew when I saw it that it was his body only and that Theo was gone from it completely. It was a relief to feel that. The funeral--that whole week--is a blur. I hardly remember it. It almost seems like a dream.

And now it has been a year. One whole year has gone by. In thirty minutes, this anniversary day will be ended. At 3:33 p.m today a new segment of grieving began. No longer can I think back and be able to say, “this time last year he was alive”. No, that is over. I try not to think I should or shouldn’t be feeling or not feeling something. That I am doing better than I should be or that I am not behaving in a certain way. I know this is a lifetime journey.

Today, other people remembered my baby and that means the world to me. We received a dozen white roses from one of the best friends anyone could ask for. Jamie’s sister sent us a pot of daffodils, blooming and growing. A friend made me a beautiful pottery vessel that is shaped kind of like an egg and inside is a dragonfly, Theo’s name and a heart. One of my mothers customers in the bank came in and said his wife wanted him to let her know she was thinking of her and of me today and praying for us. She remembered. We went to the cemetery to visit the Angel of Hope statue, took some flowers and released three balloons. One for us, one for Theo, one for all the babies that have died, whose spirits fly with Theo. Our hospice nurse Donna came over this evening with a bottle of wine and we had an anniversary toast to Theo.

It was a peaceful day to end a not always peaceful first year without him. I miss him. I miss him so, so, so much. I still have the Why? in the back of my mind. This past week it has been louder than it has been in a while. It will quiet down again eventually. And it will be back again, eventually. I feel fairly certain that I will probably never find the answers to my questions in this lifetime. I feel that I have made it through something. And I have. I don’t know what is coming next. Something will. I feel like I have lots to do still. I believe, because I have no other choice but to believe, that Theo and I made this agreement to go through this experience together and I believe that I still have things left to do for my part. I don’t know yet what those things are. I am trying to just allow things to unfold. I know he is helping me to do that. I have felt him with me today—no more than other days. I know he has brought me comfort and peace today. I feel peace and I feel love and, other than having him here with me, physically, other than somehow being able to magically wipe all this away, wake up in the morning to a healthy, bright almost 2 year old Theo, I couldn’t ask for more than that. Even though my heart is broken, I can feel his love, and that is something wonderful.

11:50 p.m.
2/20/2007

Noah's Children Fundraising Gala

2006-10-24T12:06:00.001-04:00

Hi Everyone--
I just wanted to share with you what we did Saturday night. Several weeks ago we were asked by our pediatric hospice foundation, Noah's Children, to speak at their annual fundraising gala and of course I immediately said yes. I was told only to share our story--in about 10 minutes!--and to say what was on my heart. I had thought and thought about it and early this week was getting worried as I still hadn't come up with the "perfect" speech. I knew that what I said was meant to move people there to spend as much money as possible, to make their donations real, to show them where their money goes. The organization is non-profit and exists because of donations from others.

This past week (Wed-Fri) I went to Massachusetts for some yoga training. I decided that while I was there, I would come up with something. I went alone and it was a long drive and the place is very conducive to thought and contemplation. Jamie was getting really worried that I was waiting till the last minute. I took a workshop on Life After Loss which focused on yoga as a path to healing after loss, as well as structuring a yoga class specifically for people dealing with all kinds of losses. I already know how healing yoga can be. I couldn't have gotten through this last year without the teachings I learned in my yoga teacher training (yoga is so much more than a bunch of physical postures). The spiritual basis and teachings helped me to feel connected to a Divine source, even when I was angry at God, feeling lost, betrayed, abandoned. Anyway, I asked Theo to help me come up with something (and also to be with me and help me not to have a breakdown while I was up there trying to speak--I did get teary eyed, but not to the point that I couldn't go on). And he did help me. I know that he was guiding me and that he gave me the perfect thing to say--almost as if he whispered it in my ear. I came up with the whole thing on my drive back Friday. That night, Jamie made me write down what I was going to say just to have a guideline--even though I had said it over and over all the way back from Lenox, Massachusetts to Richmond, Virginia (It did an awful lot to help me deal with the traffic on the NJ turnpike and NY thruway and the dreaded Beltway around DC!).

The theme for the gala, held at Richmond's posh and world famous Jefferson Hotel, was " A Toast for our Children". They opened the evening with hors'doevres and wines from Italy, France and Spain, then they showed a DVD slideshow of several of the children who had died this year (including Theo) and some currently in the program. Dawn, the director, who was so supportive to us and who spoke at Theo's memorial service and performed our wedding, gave a speech about the organization and then asked us up to the stage. Jamie opened up for us and then introduced me to a large crowd all dressed up in tuxedos and gowns. After I talked, they had a big auction, auctioning off art work, packages to VIP sporting events like Bowl Games in Florida, Box seats at NASCAR races and driving the cars, other sports tickets packages, ski trips, vacations to Puerto Rico, the Caribbean, New Mexico, different golf trips to exclusive courses, packages of luxury spa treatments, service packages like catering, home decorating and certificates for all sorts of services. I don't know yet how much money they raised, but tickets were $125 per person and during the auction, I heard things going for a lot of money. Afterward they had open bar, dancing and desserts. It was an amazing night and I am so proud of my baby and of myself and Jamie.

After the speech, so many wonderful people came up to me all through the evening, telling me about their own children, some had lost their own children which is why they felt moved to support Noah's Children. I just wanted to share this with all of you, since this was such a huge step for me. My mom and grandmother and Jennifer and my Dad came. It was a nice night and it felt good to be able to do something to help other families who will go through similar circumstances and to make Theo proud of me. Thanks for listening!

Love to all--

It's been a while

2006-09-12T18:36:00.000-04:00

It’s been about two and half months since my last post. I have heard from several people that they have been checking the blog and have been disappointed to see that I have not posted anymore since our marriage and honeymoon. We’ve been doing ok, I guess. Ups and downs. Just when I think I am doing better—it hits me really hard again. That keeps happening. We had a really wonderful party at our house in the first weeks of July. About 60 people came. Everyone brought a wonderful a dish and we had a really nice time. So many of our friends and family came, and there were several children there. It was nice.

Another reason I haven’t posted in a while is that I have needed a break from the blog. Both of us have, really. Our good friend David Robbins, a successful writer here in Richmond, came to Jamie shortly after Theo’s funeral and shared that he would like to sit down with us and talk with us about changing the blog into a book when we were ready to talk about it. I was very happy to hear that he felt it would be a worthwhile endeavor. The thought of having Theo’s story in book form seems more permanent to me than this blog that exists really only in some “virtual” reality. The thought that all we have been through, and continue to go through, could be a help to someone else going through any similar situation—the loss of a child, a loved one with a terminal illness, cancer, etc.—makes me feel comforted. The idea that Theo can continue to change lives and leave behind a legacy that can reach others, over and over for years to come is a comfort to me. I am so proud of my sweet boy, who endured so much and was so very strong and brave. I know that he wants to do whatever he can to help anyone in the kind of pain that he went through and that we go through and our whole family. So, we have both been spending a lot of time since that last post putting the blog in chronological order, in a readable book format, editing, things—but not too much—part of what makes it good is the immediacy, being in the moment as things, feelings happen. So I went over the whole thing a couple times, and Jamie went over it behind me, being a very good editor and able to see things that I can’t. It was very hard for both of us going over and over these past entries. Reading posts when I had such high hopes for Theo’s recovery, the chemo-day, pain and anguish, his funeral—all of it. And for Jamie it was even worse, because not only did he have to go through the events in each post again, experiencing his own pain again, but he also had to re-absorb all of my pain again. I never really thought about that—since it’s my writing, my hurt, coming from me, it actually helps me to write about it, but he is experiencing his own heartbreak and then by reading mine, takes that into himself as well. So he did that, throughout the time I kept the blog, reading posts along with everyone else, but as the editor of what will be the book, he had to relive it again and again, double. So, it has taken a lot out of both of us. He has written a beautiful introduction and I wrote an epilogue, and we have a few appendices, with readings from the services, and select comments that were posted. We have not used anyone’s name, only initials.

I think what I would like to do is turn the blog into a memorial site for Theo, keeping a section for updates on how we are doing and such. But I need to talk to a web site designer for that, I have no idea how to set up a really nice one.

I have been going to a support group regularly, which has been a great help. I’ve been attending a group called MISS, Mothers In Support and Sympathy, which is a group for parents experiencing loss from infant deaths, miscarriages, stillbirths and any death up to age 1. Jamie went with me once, but says he didn’t get as much out of it—“it is for ‘mothers’” he said. And I guess that’s true—certainly only women really come. But I find it very comforting to spend time with other mothers who have lost their babies, other parents who know how it feels. It is really true that if you know, no explanation is needed and if you don’t, no explanation is sufficient. There is a certain comfort in not having to worry at all that the person I am talking to will think I am over-reacting, will be made uncomfortable by my talking about Theo, or my tears, or if I don’t cry, lack of them. And also, just the knowledge that this person knows what it is like. I have also been to one Compassionate Friends meeting which was really nice as well. Their groups are for parents who have lost a child at any age. I think Jamie would like that group better. There were several men present at the meeting—three men were there with their wives and one was there alone. One couple who were also at the meeting for the first time had a son who died of a brain tumor at 14 months old. I was really surprised when we went around the circle, saying our names and our children’s names and how they died, to hear of another child who died of a brain tumor—I just didn’t expect it. We had the same doctors. His tumor was different, but he also had extreme damage to his brain following the first chemotherapy treatment. He died just a few days after the nerurological devastation. Their son died near Theo’s first birthday, just this past May.

As I said, I am having lots of ups and downs. I try to remind myself that it has only been 7 months. I don’t know how I am supposed to be. I know that I am not supposed to be any certain way—it’s just so hard. I get the feeling that so many people, if they think about it at all, think I should be better, and I guess I do seem that way most of the time, but inside, I am not “better”. I heard a mother quoted on 9/11 talking about having lost her daughter in the attack saying, “You don’t get over the death of your child. You learn to handle it better so you don’t go around crying in public and everywhere all the time”.

I am trying to be very patient with myself. This whole grieving process is so unpredictable and so hard. Just when I think I am doing better (whatever that means—feeling a little better, more often, able to talk to him, about him, think about him without crying as much—I don’t even really know what I mean) –but, just when I think things are getting a little better, it hits me even harder. It is like one tiny step forward and then, 2 or 3 or 4 or more—depending on the day—backward. I have been going through a really deep funk lately. Just sad, sad, depressed, missing him so much. Wondering what to do with the rest of my life. Wanting something—some mission, some thing that I can do to make a difference, to help others and to help myself really. And it isn’t a question of doing something to make his life and his death not have been vain—it isn’t for Theo, but for me. I know that Theo is ok—he is ok, he is just not with me. I know he loves me, I feel him with me all the time, sometimes stronger than other times, but with me all the time. But I feel this need or desire, to continue, I think, whatever work he began. I know that he did what he came to do—whatever that is, I have no idea how far reaching the impact of his brief life —but I don’t know what it is that I am supposed to do now. Maybe my part is over, but I don’t think so. Part of me says, well, you are doing exactly what you are supposed to be doing, but then sometimes that just doesn’t feel like enough. I have always been like that though—wanting…instructions or something…from a higher power. I am more worried that I might miss the right opportunity to do what it is I am supposed to be doing, to stay on the right path. Or that I might not see the sign…or something…or maybe that there won’t even be one. My experiences with my sweet baby are the most beautiful and mystical I have ever had, and I am so thankful for such beautiful gifts. I have looked for those kind of esoteric messages, moments when there is an opening in the gauzy fabric that separates us in our own minds from Divine and we can see and feel clearly, with all our senses, the beauty, the purpose, of our existence and that of others, of the Whole itself—but I have rarely found them, until I met Theo and traveled this road with him. Now I don’t know where to go or what to do. I feel like there is something, some thing I am supposed to do, I just don’t know what.

I will try to continue to post occasionally and let everyone know how we are doing—I hope that I will be able to re-do his site and make it more of a memorial site eventually. Thanks again, to everyone for all your love and prayers. We still need them.

Love,
Karla

Memorial Photos

2006-06-06T19:48:00.000-04:00

Theo's BirthDay Weekend

2006-06-06T17:25:00.000-04:00

I wanted to share some photos from the weekend of Theo's memorial and birthday weekend.

His memorial service was just beautiful with wonderful music and readings and so many people there to honor his life. Several people stood to speak and share with us how Theo touched their lives. I am so thankful to everyone who came to honor and celebrate him.

The candle light photo is just after the service before we all sang "Happy Birthday" to him and had birthday cake (with dragonflies on it, of course!).

The following Sunday, on May 28, we had a very small private dinner for our family and for our closest friends--all the people who have been so supportive to us throughout this very difficult year. Just before we had dinner, we shared a surprise with everyone there and................got married! Our wonderful chaplain from Noah's Children, Dawn Colapietro, who has been so helpful to us throughout this difficult time, spoke at Theo's memorial service and performed her very first wedding with us on Sunday evening. Everyone was so surprised. It really was wonderful though, because Theo was a part of the ceremony. It was a perfect way to express how his presence, his life with us, has made such a difference in our lives, in our relationship with each other. Having a wedding, with our closest friends and family on the anniversary weekend of his birth, was just perfect. Our friend Chris, co-owner of my favorite restaurant Bacchus, cooked for us and we had the space to ourselves and it was all just beautiful. It was so nice to celebrate Theo's life, our family and our love and friendship, in that way with all the people we love.

The next week we went to the beach for a few days and that was nice. The weather was beautiful and it was good to be able to spend time together, relaxing. It was a bittersweet honeymoon though. We are very happy about our wedding, but missed Theo so much. It was a very sad week for me. I spent a lot of time just thinking of him, missing him. Taking him to the ocean was one of those "firsts" that I was looking so forward to doing with him. Vacations on the beach, watching him build in the sand, run from waves, laugh and play. We both wanted him to be there with us. There were other children and babies, but a lot of it I think had to do with the way the ocean opens up your heart, brings all the emotions to the surface, stirring up feelings, brings the unconscious floating closer to the surface. Water does that. Also having the time to reflect, to really be with my feelings, not having to (or being able to) go to work, focus on the house, talk on the phone, no computer, no cell phones, no things to do. All of those things together I think made the pain of his absence greater. I spent a lot of time crying, but also feeling good, feeling love. Water does that too. Especially the ocean. When I would cry and feel all the hurt, missing him so much, Jamie would remind me to go into the ocean and it always made me feel better. Playing in the waves, allowing the water to wash away the hurt for a moment, allowing myself to just float, my mind and my heart to just float with the soothing motion of the water. Closing my eyes and totally relaxing, I could just float and let the ocean heal me. I imagined I was floating and swimming in a sea of tears, mine, all the mothers who have lost their children, tears of sorrow, tears of joy, tears of pain and of healing. I made a sand scultpture of a dragonfly and we decorated it with seashells. We wrote Baby's name in the sand. We walked on the beach and collected lots of seashells. I decided to make seashell chimes as a souvenir for our honeymoon when we returned home and so I was looking for shells with natural holes. At first, I looked for shells with no flaws but the small holes at the top, but I found that as I looked, I preferred the ones with bigger or multiple holes, the ones with ridges and broken places, to the pristine and perfect ones (of which there are very few anyway). The ones I chose instead aren't the perfect, unmarred ones, but they are just as beautiful. Even more so, because their holes and broken places, the strange ridges and crevices making patterns across their surfaces, give hints to all they have been through; tossed in the sea, thrown to the shore and sucked back out, hundreds, maybe millions of times, dropped from the sky by hungry gulls, hosts to parasites eating away at their shiny surfaces; all of these things illustrate the life of the shell, show what each has experienced, all these things leaving marks that change the shell into something new and different--the same shell, but changed, unique. They are just as beautiful, and made more interesting by their trials and tossings.

I found myself thinking many times as I sat and looked out at the horizon about a poem I read a while back about watching a ship sail off into the horizon. I thought of how Theo is the whole ocean now, the air, the sky, the love in my heart and everything good and beautiful. I kept imagining how glorious his existence is now and how none of that makes him being gone from me any easier. But I am comforted by knowing those things. I feel him around me and with me and in me all the time. I know he is with me always.

I think the poem was written by a man named Henry VanDyke, though I have found varying versions of it attributed to other people.
I have changed it a little here for Theo.

~~~~~
I am standing upon the seashore. Before me, a ship spreads white sails to the ocean. An object of beauty and strength. I stand and watch until at length the ship hangs like a speck of white cloud just where the sea and sky come to mingle with each other.

Then someone at my side says: “He is gone!”

“Gone where?”

Gone from my sight. That is all.
The diminished size of the ship is only my perception.

And just at the moment when someone at my side says:
“He is gone! He is gone!”
There are other eyes watching the ship come nearer,
Other voices ready to take up the glad shout:

“Here he comes! Here he comes!”
~~~~~~~~~~~~~~

May 4, 2006

2006-05-04T16:27:00.000-04:00

Theo's yoga class was just wonderful. I can't thank my teacher Nora enough for doing such a wonderful kindness for us. 25 people came and did yoga with us in a sacred space. I know Theo's spirit was there too. Very close friends from all different areas of our lives, fellow yoga teachers, people we have met recently and a few people who we had never met, but who were touched by Theo's story all came to honor his life and to share their love and support with us in a peaceful and relaxing space. Several things were left on the class altar in Theo's honor for us to take home with us, sprigs of rosemary for remembrance, a copy of The Little Prince, personal notes to Theo, flowers, a sparkly purple dragonfly to stick to a window, a crystal pair of praying hands and a beautiful silver bag with a lovely pair of dragonfly earrings made of silver with an amethyst body and opals for wings from two of my dear friends and fellow yoga teachers. Donations from the class were more than enough to pay the rent for the space for the class, for the memorial service and for the birthday cake I want to get to serve after the service to celebrate Theo's first birthday on May 26. After class, my friend Angela handed me a wrapped package from her mother Carol, whom I have never met, but who sent me an email several weeks ago sharing with me her experience with her baby boy Curtis who died at 5 days old in 1978. When I got home, I opened the package and found a long letter telling me all about his birth and death and how her life was changed and about the charm bracelet she had made when her second daughter was born a year after Curtis's death. It had girl shaped charms with her daughters' birthdays engraved on them. She said she felt that something was missing when she wore it and so took it back to the jewelry store where she had made a charm of a boy's head engraved with Curtis's name and birthdate to place beside the charms for her girls. With the letter was a black velvet box with a charm bracelet for me inside. On it was the same kind of boy's head charm with Theo's name and birthdate engraved on it, a silver dragonfly charm, and a heart shaped charm engraved with the date of his memorial service (and first birthday). I was so touched that she would think of me, put so much love and thought into such a special gift for me, someone she has never met, but whose grief she shares in her own loss. I was just brought to tears. So many people have done so many wonderful things to express their love and support, and to demonstrate how special Theo has been to their lives and I am so grateful. I said in our yoga class (through tears), this whole experience would not have been bearable without the love, support, prayers, healing and comforting energies, from so many people who love us, some without even knowing us. I can't imagine what this would be like without all of you who have been here for us, offering your strength, support and love.

There are so many times throughout the day that I just miss Theo so much. I have thoughts of Why? Why? Why? still, not always, but sometimes. I just want him back so badly. I have flashes of memories, sometimes good memories, sometimes bad memories. I know that it will be this way for a long, long time. Every one I talk to who has lost a child says, "You never get over it. It gets easier, but it never goes away." One woman told me she talks to her son every day. He died when he was 2 years old. Now he would be 19. I know that one day, when I see Theo again, it will be as if no time has passed at all, and we will talk about all this with no pain and no sorrow, but in the meantime, living here without him is just so hard. I was talking about Theo with a friend the other day and I said something about his having died two months ago and she said, "Was it really just two months ago? It seems like it was so long ago". It made me aware of the differences in how other people experience time and how, to others, his death may seem like something long past. In some ways, sometimes, it feels like it all happened long ago and in other ways, it seems like yesterday. Sometimes I can't believe that this time last year, I was still (hugely!) pregnant. On May 4, 2005 he wasn't even born into the world yet.

I was able to hold the new baby boy of one of my co-worker's today. After I gave him back to his mother and went back to my office, my heart hurt terribly, but I didn't cry and I was able to get back to work.

Things are going well with the new house. Right now, both places are just chaotic, with things everywhere, out of place. We have moved a lot of things to the new house as we have been painting and getting things ready. I still need to paint the guest room and the upstairs hallway and the kitchen cabinets. This coming weekend we are going rent a big truck and move the rest of our things--bed, sofa, dining room table and hutch, the rest of our clothes and few other things and start living in our new home. We have both been just exhausted with so much going on, painting and moving things every weekend. We look forward to having a cook-out/housewarming sometime in June when things are more settled.

Love to all,

Karla

4/24/2006

2006-04-24T21:15:00.000-04:00

Sorry it's been so long since I last posted. We have been extremely busy. I got a letter from our landlady one week after the funeral telling us she is selling the house. The letter stated she was putting the house on the market May 15 and that we had the first option to buy it if we wanted to or we could stay on, but that realtors and lookers will be coming in and out and of course, we would run the risk of having to vacate in 30 days upon sale. Our other option is that we could give a 60 day notice and look for another place. She was aware of Theo's death and his long illness, but there was no mention of him, the loss, or anything pertaining to what we have been going through. I thought about calling her and asking her to wait a month or so until June or July and tell her how we had his memorial service planned and then a week long vacation planned for right afterward, and how this has been kind of a stressful time and all, considering. But I didn't. The following day, Sunday March 13th, we circled some places in the paper and went out to just see what was out there. We drove around and looked. Some places were having open house but we didn't stop. We drove through a neighborhood fairly close to where we live now, near one of the major public parks here in town, and saw an open house that we hadn't seen in the paper and just decided to stop and go in. We looked and looked and decided we liked it and it was a really good price. We weren't pre-qualified or anything yet. It was the first house we looked at. The realtor happened to be an agent who regularly represents both sellers and buyers and suggested that we call the lending agency associated with his offices to get prequalified. So we did and we made an offer that day. The then-owner accepted the offer, signed the papers that night and gave us everything we asked for--all the appliances, a gorgeous mirror in the living room, and over $3000 in closing costs. We closed on April 14 (Good Friday). It all happened so fast and so totally stress free. Everything just fell into place. After we signed the papers that night, Jamie told me that he thought Theo was happy we were getting the house. I said, "what makes you think that?" and he said that while we were walking through the house the first time, he was humming a Thelonious Monk song (the jazz musician Theo is named for) --one of the really happy, boppy sounding ones. The realtor came over to our house that evening with all the papers and we had the jazz music channel on. The song Jamie was singing was playing as we signed the papers making the offer.

I do believe Theo had something to with our finding the house and with how easy the whole thing has been. We had an inspection on the month anniversary of his death, March 20, and everything went great. There is absolutely nothing wrong with the house that we didn't already know about. It's in perfect shape for a house built in 1948. And now we will have our own backyard to plant a tree for him. I've had his placenta in the freezer since his birth. Some people think that's really strange, but I wanted to plant a tree and bury the placenta under the roots to nourish the tree. Theo would watch the tree grow as he grew--but I didn't know where I would plant the tree. I was just saving the placenta it until I could figure out a good place to plant or until we bought a house. We were originally planning on buying a home when he turned 2 or 3. Now I have a yard to plant his tree in. His placenta is part me and part him. It sustained him and nourished him as he grew and now will be part of the tree as it grows. In the H'mong culture, they believe that where the placenta is buried (usually under the family home) is where the soul will always return. It acts as a beacon so the soul does not get lost in the land of the dead, always showing the way home to family. I know Theo is with me all the time, no matter what, and would never be lost, but I am very glad to have a place to be able to plant his tree and give him a place to call home.

We closed on the house April 14 and have been extremely busy. Getting ready to move, making plans, painting, thinking about decorating, where to put this and that, has given me a creative place to focus my energy and thoughts. We have been going through our stuff cleaning and tossing out and giving away things--I have accumulated so much stuff over these years of living in our current house. I am really looking forward to the move. I feel it is exactly the right thing to be doing right now. I know that Theo is connected to the house and that it will be his house as well. I think he picked the house out especially for us. At one point, our realtor called and said that he didn't want me thinking that all real estate deals went this smoothly. I told him I knew it. The house is absolutely perfect for us and I am so very grateful for it and how easy and smoothly the whole thing has gone and continues to go. We are in the midst of painting and taking boxes of things over. I think next weekend we will probably move the big things in and move in completely. We don't have to be officially out of here until May13 so that gives us a lot of time to get things ready and take our time.

I have continued to have some very difficult days and moments--I am sure that I will continue to do so. There are days that I just feel exhausted and sick with grief. I just miss him so much. It's hard for me to believe that things can be so much more difficult and harder than they were right after his death, but it is true. I know that is normal. The inital shock and adrenaline rush wear off and then you're left with the reality that he is really, really gone. I will never see him again in this life. I find myself still have some very difficult moments with the "whys" and the unfairness of it all--seeing parents yell at or mistreat their children, stupid parents on tv abusing their children, etc. I have many moments of feeling jealous of mothers and really sad when I see them with their children out places. Especially when I see pregnant women with other children or toddlers. I'm sure it's all normal--it's just really hard. I'm not around that many kids (babies and toddlers I mean), but I don't tend to have those feelings with people and children I actually know, just strangers.

I will post more later to update you on the move.

I would like to extend my gratitude to my teacher Nora who is offering the yoga class dedicated to Theo. It means so much to me. 25 people have already signed up for the class. I don't think she has anymore space unless we try to find another location and since it is next Monday, that probably is not possible. Thank you so much to Nora and to everyone taking the class. Having people who care about us there, in Theo's honor, to do yoga together, is such a wonderful thing. I am looking forward to the class.

Love to all,
Karla

Yoga Class in Theo's Honor

2006-04-20T16:07:00.000-04:00

Dear Baby Theo's loving friends,

My name is Nora Vimala Pozzi. I have been Karla's yoga teacher and her trainer while she was training to become a yoga teacher two years ago. I have been wanting to do something for her.

As you all know it is very difficult to do anything at all, without feeling it is never enough. The journey that both Karla and Jamie have traveled since last August, has been painful and dramatic. They have survived and have become stronger in their spirits, but to the expense of a lot of grief, which just two months after Theo's passing, is probably in its earliest stages. The emptiness that Baby Theo has left in their home and hearts is almost more than anybody can endure. What is more, now that Baby Theo is not around in his physical form anymore, most probably, the wonderful support from friends may start to dwindle.

The upcoming Memorial Service and Theo's Life Celebration will be an opportunity to bring us all together.

I wanted to offer Karla a gift of a Yoga Class for her friends and supporters at The First Unitarian Church, the same church where the Service will be held. The purpose will be a means to raise some money to help pay for the rental of the space for the service ($200), since I will be offering my teachings for free, the income will go directly to Karla and Jamie. The class will also serve to bring some of her friends and supporters together to share an activity that is both spiritually uplifting and physically relaxing. The class will be dedicated to Baby Theo. The donation for the class will be a minimum of $12 (which is a standard class fee) or more if you feel that you would like to donate more. All donations will go directly to Karla and Jamie as a gift to help pay for the cost of the service, rent of the space, flowers, refreshments, etc. However, if your budget is low and you cannot afford it, just donate whatever you can.

The space can hold approx. 15 people or very crowded, 20 maximum. If you think that you want to attend, please send a response ASAP so that we can reserve your space. If you sign up and decide not to come, let us know, so that we can give your space to someone else. YOGA CLASS with Nora Pozzi in honor of BABY THEO to raise funds for the Memorial Service DAY: Monday May 1, 2006 TIME: 7:45-9pm LOCATION: First Unitarian Church 1000 Blanton Ave (across the Carillon in Byrd Park) entrance through Douglasdale Rd. DONATION: $12 or more WHAT TO BRING: a Yoga Mat or a big towel Don't eat a big meal at least 2 hours before class

Email Karla at this address or Nora directly at vimala@erols.com

Follow up to 3/30

2006-03-31T21:33:00.000-05:00

I have been very worried that people will be upset or offended by my last post. I have made more changes to that post, spent more time on it, writing what was in my head, changing it, re-writing it again and again, saving it as a draft, changing it agin, then posting it and editing it three times the first day I posted it, trying so hard to get it to express exactly what I wanted it to without hurting anyone's feelings and have had a very hard time doing that. I have spent more time on that last post than on any other in the entire blog. I've been going through a period of anger and bitterness for a few days. I have been through periods like this before, there have been many times throughout these months I've felt anger; anger directed toward God, toward cancer, toward things unseen or unnamed. And through all of that, you have all been supportive of me. Now in this last post, it seems like I am directing anger toward those who have been my supports. I don't want it to seem that way. I hope that nobody takes it that way. I think the periods of anger that all bereaved people go through are frequently misdirected. That may be the case here--misdirected anger. I don't have any concrete place to direct it. Many times people become angry at the person who has died, working through those feelings eventually. But it is impossible to be angry at Theo on any level--I can't possibly direct any anger toward him. Impossible. I don't have that in me. All thoughts of Theo bring with them love, sometimes sadness, but always love, love, love. So, that leaves a lot of other places to direct (or misdirect) angry feelings. Mostly, it does no good at all--it does no good to be angry at God, or at cancer, or at random people. And it definitely does no good to direct anger toward people who have tried to help and support me. It does no good to spew misdirected anger in random directions, but it must be gotten out so that it can be changed to a different sort of energy. That's what I've been trying to do, to get it out so it can be transformed somehow. To something more constructive. And I can't get away from it being there. I don't even know why. There is no one I can justifiably be angry at. I could be mad at God, and have been, but it is pointless and just causes further hurt later, resulting in the inability to have a relationship with Spirit and therefore no spiritual comfort; so God anger must be resolved. And I don't believe God did this. I have to also believe that God could not heal him, or Theo would have been healed. But even if I do get mad at God, at least God understands. Somebody who lost a child told me that she believed God took her anger and turned it around and transformed it , taking it in and then sending it back to her in the form of love and peace and strength. I want all my negative feelings sent back to me in that way. I want to take back the transformed engery and then make it into something good, sending it back out changed again as something good, creative, helpful. Anger resulting from great pain and grief is a necessary thing, usually unavoidable, and it must go somewhere once it comes out. The stages of dying that Elisabeth Kubler-Ross made famous also apply to the grieving and bereaved. I know I definitely fit into one of those stages at any given moment. Denial came and went quickly when I didn't want to believe that my baby had anything wrong with his brain. Sitting on the sofa with him that first morning when our lives changed, watching his uneven movements and his little eyes, one closed, one open, the little voice in the back of my mind whispering "brain problems, brain problems, something is wrong with his brain." I pushed it away immediately, denying it, not telling the pediatrician on the phone, but knowing in the ER I had to say something, feeling terrified to acknowledge the fear that was much more manageable pushed way down and back. I didn't want to believe that his brain would or could be damaged. They kept telling me in the hospital, looking at the scans after the surgery, "We can't say how much damage might be there, we have to wait until the swelling goes down, some of this dark area may be stroke or damage, but could just be swelling"--they had their own medical brand of denial. I don't think any of them really wanted to believe that his brain might be damaged from the tumor and certainly not from the very interventions that had saved his life. When the scan was revealed showing indisputably the extensive brain damage, we were completely surprised, shocked, devastated, all our hope dashed, because we had not been able on any level to acknowledge that in all the previous scans, there were probably signs of that damage occurring, and neither could our doctors, I think. Poor Jamie was there alone when the news came. I didn't want to believe that the cancer would kill him. I didn't want to believe for an instant, until I had no other choice, until we had to make the choice to allow it, to bring him home with us and spare him as much pain as possible, knowing the outcome. But I moved quickly past the denials, thank goodness. That is a terrible place to be: not a useful place to be. You can't even admit that you're there. A good place only for a short time. We are safe and cushioned there for a while, but staying there is very dangerous. We can only come out once we have the strength to know what is true. The rest of the stages, anger, depression, acceptance, bargaining. Those things come and go. We flounder back and forth among anger, bargaining, depression; all of which include a good deal of fear. All those things come out of fear. That's why love and support can bring you out of those dark places. Love cancels out fear. I don't even know if we ever get fully to acceptance. It certainly doesn't feel that way right now. Do I accept that he is gone? I know that he is dead, but I don't know when I will be able to say that I fully and peacefully accept that. I don't know. Maybe knowing it and sometimes (when not angry or feeling depressed about it) feeling peaceful about it means acceptance. I don't know. I know these stages don't occur one by one in stages, they come and go. Anger is one of those that comes and goes, usually, for me, quickly.

I apologize if I hurt anyone's feelings or caused any discomfort or pain with my comments on the last entry. I don't want to make excuses, but I am anyway. They are, at least, good ones. I don't have a choice but to go through these feelings. Anger, misdirected and otherwise, happens through the process of grieving. The work of greif can't be done without the negative feelings that are part of the process. Anger is one of the chief negative feelings. Eventually the negative and difficult feelings have to come out, the fear, the anger, the sadness, the pain. Otherwise, those angry, depressed, desperate feelings stay bottled up and eventually start to wear away at the heart. I can't keep bad feelings inside, I have to let them go and let them be changed to something else; hopefully something that can do some good; for me, for others, for some constructive purpose.

I hope that you can bear with me. I do appreciate and need support from all of you, in whatever form. Whether you email me, or post a comment or pray for us or meditate on us, chant for us or send positive, strengthening, peaceful energy and light.
We still need your love and support. Thank you.
Love to you,
Karla

3/30/05

2006-03-30T22:15:00.000-05:00

It's been a month and ten days since Theo died.
I've been hearing from a lot of people that I am doing really well. So many people ask, “How are you?” and I can’t tell you how difficult it is to answer that question. Even when I know people are asking because it's a social thing and the expected answer is, "fine" or "good, how are you?". I usually just say, "I'm doing ok". I think I am doing ok. But it isn’t that simple. I frequently hear, “You seem to be doing really well” or, “You look great” or, “You are such a strong person”. These comments set off strange feelings. Sometimes, I have a lot of mixed feelings about everybody thinking I’m doing so well. Sometimes I feel as if people are surprised, that the expectation is that I should be devastated, barely able to function, with swollen eyes, tear-streaked face, glazed eyes. As if I should be commended for doing so well and it bothers me sometimes. I know if nobody asked me how I am feeling or how I am doing, I would be upset and feel that nobody cares. I don’t want anybody thinking that I’m some poster-mom for strength in a tragedy or an example how to do well while grieving. And I would never want anybody else going through this to get the impression that it's been easy. I'm not always doing so great. I cry a lot. I get angry. I still feel shards of bitterness. People still make inappropriate comments about the afterlife and Theo’s new state of being and Universal plans.

There are certain things that people should not say to parents who have lost a child. Especially when people don’t know the parents all that well. My baby is not in a better place. God does not need another angel. I do believe that Theo is watching over us, that he sees and feels us, and that he is helping me in many ways, but I don't for one second believe that he is dead because "God needed another angel". People tell me I can have another baby. Some people who bring up new babies (usually people bring it up more with me than with Jamie, but it happens to him, too) ask whether we will have another baby or if we want another baby or tell me (or him) that we should have another baby. Things like, “You’re young, you can have another baby.” Nobody tells a widow she can get another husband; or an amputee that he can get another arm; or a brain injured person she can get another brain. No new baby could ever fill the empty place that reminds me near constantly that my Theo is gone and I can never again hold him, never coo to him, never smell his scent again. Sometimes asking whether we plan to have more children might be appropriate, but sometimes not, and so much depends on how it is said. Another hurtful thing is the "he is in a better place" comment. No parent who has lost a child, even if they comfort themselves with the thought that their baby is somewhere safe, warm, comfortable and happy, really feels there is a better place than in the loving embrace of mama and daddy. I am so very glad that he is no longer in any pain, but I don't think he is in a better place. A different place, a good place, but not better. Sometimes I wish people would refrain from telling us that “God has a plan.” This might make some people feel better, and may even be true; but most of us who have lost our children don’t care that God has a plan,even if we believe there is a plan. There very well may be a plan, but we don’t much care for it. Or when people say things like, “he was too good for this Earth.” That bothers me. He was goodness itself, and would’ve done Earth a world of good had he been able to stay. I know he would have. When our child is terminally ill, don’t tell us things like “your doubt may be keeping your son from being healed.” I shouldn’t even have to explain the reasons behind that one.

I know that people who say these things are trying to be helpful. I don't want to hurt anybody's feelings or alienate anybody or sound unappreciative. I appreciate the gesture, the attempt. I know that I have put our lives out on display by writing these posts and allowing hundreds, maybe thousands of others inside our journey. I know that by doing that, I am inviting comments and making it possible for people who don't know us to know us through these words. And I am glad that I have done it. But I would like to ask that people please think about what is said to a parent who has a terminally ill child or whose child has died. Say, “I am so sorry”, admit that it is awful and sad and that you may not know what to say. We know how terrible it is, talking about it doesn't make it worse, it makes us feel not so alone. Don't be afraid to mention the child's name, we are already thinking of him and we like to hear other people talk about him or remember him. Let us know you care, let us know that you are there for us, that you’re thinking of us, that we are loved. That we are in your thoughts, your prayers, your meditations.

Sometimes when people talk or write about how well I’m doing, I can’t help but feel disturbed. I know people mean well, but sometimes I just feel that saying how great I seem to be doing minimizes the gravity of the situation--not that anyone thinks that, it's only how I feel. I know no one thinks that. Or I feel guilt over the thought that so many people have the impression that I’m doing so well. And I know there are a lot of people who think I am doing really well. And I guess in the whole scheme of things, I am doing well, I know that I am doing better than a lot of people would be. But I also think it’s normal to go through feelings like these. I think about and talk about how normal all the things I go through are. Telling myself, this is normal to feel this way, or that way or to feel angry or bitter or to have good feelings. Several times people have said things or posted things or wrote things that spark feelings of anger or dismay or guilt or puzzlement, and I know that many of those feelings are due simply to the fact that I am bereaved, I am grieving. I am very sensitive to things; not all the time, but sometimes. But I feel these things, I take them in, deep inside, and I wonder what people are thinking when they say them or write them down. And I know that mostly people don’t know exactly what to say, and mostly it’s my reception or my impression at the time that brings on a negative feeling or a bristling, but still, I can’t take full responsibility for others’ words: my grief colors everything in my life now, but I don’t control what others do or say. People can know that there are things that shouldn't be said, like, “You’re doing so well after just a month”, or “He is in a better place”, or “God has a plan”, or “He was just too good for this world” or “God needed another little angel”. Unless you know me very well and can have a conversation or a discussion with me about your own thoughts and feelings on these things, try not to just cast about for things to say because you don’t know what else to say. Consider carefully what you say to us. Not just Jamie and me, but any parent who has lost a child. Really, any person who has lost a loved one. To us, these are not just passing comments. We think about everything. I search and search for meaning, for an answer to the “Why?” that screams through my mind. I spent a great deal of time over the first four months or so after the diagnosis screaming it; asking other people, asking God, begging God, crying out “Why? Why?” and begging, crying for help, healing, miracles, answers to “Why”, much of the time wondering if Anybody was even listening or cared. The last two months I’ve said “Why” it in a quieter voice; still the question persists, now mostly in silence. But it’s still there, it will always be there, it’s just that the need to know “Why” right now doesn’t seem so urgent as before. There is nothing else the human mind can do but allow “Why” to rest, to seep below the surface; otherwise, it would make a person --- me, you, anyone --- crazy. The answer to the question isn’t going to come anyway. One day, when I can be with Theo again face to face, soul to soul, I will know and he and I will talk about it, but until then, I will have to endure the persistence of “Why?”

Lots of people think I am doing really well. I guess I do seem to be doing really well when people read what I write or see me day in, day out, working, shopping, conversing with people about things not having to do with Theo, not in tears, going about life, not in a psych ward someplace, laughing, not in a puddle on the floor. Maybe that people think I’m doing so well means that I am not grieving publicly enough, or deeply enough. It’s like feeling guilty for laughing about something. I laugh a lot, I’ve always laughed a lot, it’s one of my favorite things to do. I choose my friends largely on how much I laugh when I’m with them. Every person I love can make me laugh. But now, every single time I laugh, I think about how inappropriate it seems --- even though it isn’t --- or how I shouldn’t be laughing or cutting up or making jokes about anything. Even when I know that laughter is good for us. But my child is dead. My child is dead. My child is dead. Nothing should be funny. It feels unseemly or improper, out of place, wrong to laugh when my heart is so broken, when I have only lately buried my first and only child. I don’t know how I am supposed to be doing. And I know as I write that, the response is that I am not supposed to be doing any particular way. There is no right or wrong way to grieve, everybody goes through it differently. Even people who suffer the same loss go through it differently. It’s different for me than it is for Jamie, for my mother, for my father, for both my grandmothers, for Theo’s aunts and uncles, cousins, for other people who knew him and love him. I know all the “right” answers for these things, what I would tell someone else if they came to me for counseling or help. None of those things, the textbooks, the therapist’s responses really mean anything in the face of this. Maybe later they might, but even as I tell myself the right things, even as I put those to use in my life, knowing this is normal, knowing it’s okay to have conflicting feelings, knowing there is no schedule for grieving, no right or wrong way to go through it, none of these things feels really meaningful in the midst of pain. It’s a cumulative effect. I know that all the feelings and pain, the things I do and think and say, the comfort I take from others, the help the support, the anger and the resolving of that anger all are part of the process and later will serve to help me come through to the other side somewhere. But in the meantime, nobody else sees me when I am in a puddle on the floor. Nobody else sees me look at his pictures over and over throughout the course of a day, studying each little feature intently, his hair, the bend of his finger, the shape of his mouth, or at other times, just stealing quick glances. Nobody else sees me holding his little socks between my fingers, picking up a piece of clothing or a blanket and holding it to my nose, breathing in deeply to take in what might be left of his scent on the fabric. Nobody else sees or can know how often in the midst of meetings or conversations or other normal every day activities, I am thinking mostly of Theo. Nobody else knows that he is always in my mind, even when something else is going on; he is never away from my thoughts. Nobody else knows what it is like when I lay down to sleep and stare, wide awake at the darkened ceiling or at the empty bassinet still next to my bedside. Nobody else sees how hard it is for me to behave normally after running into a co-worker and her new baby, or while seeing babies in the store when I really want to just break down and cry. Nobody sees how hard it is to keep that inside. I know that it’s good to cry, to get it out; trust me, I cry a lot. I just prefer to do most of my crying alone. And I don’t like to lose it in the middle of a store or at work or other public places. Crying and sobbing and snotting all over the place are, I feel, personal things. Sometimes I cry with Jamie, on his shoulder, sometimes with a trusted friend, but for the most part, I cry when I’m alone. I feel that’s the best way to really get it out. Not having to worry about how the other person is feeling. Are they getting tired of it? Are they wondering when I’m going to stop, have they had enough? It’s just easier and better for me emotionally to get all my crying and sobbing out when I’m by myself.

Yes, I’m functioning pretty well. We both are. No, I’m not in a psych ward or having to take a bunch of “nerve tablets,” as my grandmother would say. Yes, I feel peaceful and even happy sometimes. As far as grief goes, we are both doing pretty well. We are working through it, doing our “grief work” pretty well. Neither of us is denying how terrible it all is, nor are we denying that there are still lots of good things about life. Each other, laughter, springtime, flowers, new things, plans, dreams. But I don’t want anybody under the impression that there is anything, anything, easy about any of this. And I don’t always do remarkably well. When I sit down to write these posts, I know I am writing for an audience. These posts are not just for me. If they were, they would be very different. I am writing to you, sharing our lives with you. When I sit down to write, I don't tell about every agonizing moment of knowing I will be forever in this life without my first and only and beloved child. Knowing always, every second, that he is dead of a terrible and extremely rare brain tumor that ate big holes in his little, perfect baby brain. A brain tumor that one in 30 million people gets. That's about 4 times the population of New York City. Or about the combined population of the states of Virginia, Florida, Mississippi, Idaho, Oregon and Washington. That's some of my bitterness coming out. The memories of our hospital time border on traumatic. When I look at the pictures we took in the hospital, I have trouble breathing, my chest hurts, my stomach feels knotted up, my eyes swim and my throat goes dry. I am not going to look at them again for a very long time, maybe ever. I took them thinking that one day I would show them to him. Show him what he went through because he would be too young to remember. Those memories sometimes replay over and over. Sometimes I will have a thought of Theo and something will trip in my brain and I will just start to cry. No trigger, no baby in a grocery store or work corridor, no picture, no poem or song, just a thought and then a flood of tears. That happened the other day when I was driving on the highway. I thought I would have to pull over, but I did okay. It went on until I got home and could cry on Jamie. I don’t write about every little thing that tears my heart out.

There are many things that feel nearly unbearable. This whole past 7 ½ months has been unbearable, but had to be borne. We had no choice but to bear it and we did it in the very best way that we could. We didn’t run away from it even when we wished we could. We didn’t abandon Theo or each other. We went through it. And it will be with us forever. I know that we spent in these last 10 months since his birth last May more time with Theo than some families spend with their children in whole lifetimes. Whole days and nights were spent just holding him, looking at him, talking to him, singing to him, breathing with him, devoted to him. I know that the time we had with him was sacred. I know that I was lucky. Lucky to be the mother of such an extraordinary, special baby boy. I know all parents think their babies are special, but Theo was truly extra special. I am not the only one who knows this is true. I may never know in all my living days why this happened to him, to us, but I will always grateful to have known him and loved him and cared for him. He touched people, not only through his story, but through his being. A friend of mine visited him in the hospital and told me how upon seeing him, she was overcome with an incredible sense of peace and well-being. Another friend who stayed with Theo for a few nights so we could sleep in our bed tells me of how she was different, how something inside her has been changed for having spent those nights with Theo. There was something about him. I will wish for him to be with me for the rest of my life. I may be doing well, but there will always, always be an empty place in my heart that longs to be filled with no one else but Theo. His love and his spirit will always be with me, in my heart and soul and all around me, but my arms will always long to hold his little warm body close and that longing will never go away.

I hope that none of this upsets anyone who as told me how well I am doing or who may have made any comment that you think might have bothered me. It isn't about you at all. If you didn't say anything at all, I would feel abandoned and as though nobody cared. I just feel the need to explain all the facets of this process. To be honest about how I feel, how things are for me, for us as a family. I just wanted share some of these things. And I can't do that without talking about the hard and sad and bitter things. It has been, at times, harder now, a month and ten days later, than it was in the very beginning, right after his death.

Grief really is, just like all the books say, like waves in the ocean. The waves come and go, moving in and receding, high and low tides, sometimes smooth and calm, sometimes rough and choppy. And when you get hit by a wave, there is really nothing you can do but allow it to take you with it until it is over. If you struggle or fight it, it only makes things worse. It might be a little wave that just kind of knocks you off balance a bit, maybe you fall down and scrape your knee on a sharp piece of shell or this time, it might be a really big wave coming up fast, out of nowhere, crashing down on you, knocking you sideways and under. You might feel scared, or on the edge of panic, totally at the mercy of something much bigger and powerful than yourself. You might feel like you're drowning, like you can't breathe. Rolling over and over, seeing the light above, then dark murkiness, being pummelled and tossed about, maybe bruised and disoriented, until you are left to dry on the sand. The waves of grief are just like that; and as unpredictable, except in that you know that the waves will come, just not how or when or whether they might be calm or rough. But if you try to float with them, relax as much as you can and trust that you can float, it is a little easier.

Today we recieved several more cards from Noah's Children acknowledging those who have given donations in Theo's memory. Thank you so much for your kindness and generosity. And thank you again to everyone who has been so caring and kind to us. We really appreciate your love and support. I know I say that a lot, but not enough. We are very grateful to you all.

Love,
Karla

3/21/2006 Springtime

2006-03-21T15:42:00.000-05:00

Just to let everyone know, I set the pages to show only two posts per page to avoid problems with the settings. To see any previous posts, go to the 'previous posts' section and click on the title of the post, or go to the monthly archives. Also, I believe the comments are enabled now, so you can post comments but feel free to send an email to babythelonius@yahoo.com if you like or if you have problems with the comment link.
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Yesterday was the Spring Equinox and the one month anniversary of Theo's death. It seems kind of appropriate that Spring came on that day. On the day of the equinox, the earth experiences equal times of daylight and dark. After that we begin to notice more and more as the season goes on longer periods of light each day. It kind of feels like that for me right now. Periods of darkness, hurt and grieving feel a little more balanced by times of lightness. A little more laughter, a little less pain, a little easier to remember him and not hurt every time. Hopefully the lightness in my heart will continue to grow with the light outside. I have tried really hard, throughout his illness and his death and now through the grieving and bereavement, to be as open as I can, to allow myself to continue to be open to my feelings and to grow, to not shrivel up or stay tightly closed. I only hope that as the flowers and plants grow and bloom, I can as well. But, then again, even when spring comes on the calendar and the light stays a little longer, we still have periods of cold and frost and rain and snow, especially early on in the season. It's like that outside today. Cold and dark.
One of my coworkers brought in her newborn baby today and I didn't expect to walk around the corner and see a brand new baby. It was really, really hard for me. I had to work really hard not to fall apart in the meeting I was sitting in after I ran (almost literally) into Jill and her new baby boy. He looks nothing like Theo, but it was just the memory of him that little, in my arms, sleeping, nursing. After that I've just been nearly in tears all day.

I just miss him so much. We both miss him so much. I told Jamie yesterday that it feels like he is still here. It's hard to really explain. I've mentioned the feeling to other people occasionally and others have thought I mean that sometimes I forget that he is gone. That isn't it at all. I never forget that he is gone. It's the first thing I think of every single morning. Most of the time I open my eyes from sleep and have that brief moment when I'm thinking of nothing really, and then the thought comes floating up -- "Theo is dead" -- and the heaviness settles around my heart. Or sometimes, more rarely, the thought doesn't float, but crashes in, mean and shocking. Rushing in like freezing air or having the breath knocked out of me. Sometimes it wakes me up in that way and it feels like a shock. But usually the thought just kind of floats in, reminding me, as if I need a reminder, "Psst...hey, remember...your baby is dead...don't forget..."
So forgetting for a moment that he is gone is not what I mean by saying that it feels like he is still here. I mean it feels like he is still here. I can feel him around me or nearby. Not in a "woo-woo" (as my friend Lenore says), ooh I can feeeel him all around me kind of way, just a matter of fact, Theo is here way. As is maybe he is asleep in the next room or just downstairs. Like when somebody comes into a room, and something, the energy in the room, your perception of the presence of another person, changes the way the space feels. Parents, lovers, close friends have a certain knowing about the particular kind of feeling that surrounds the one they love and I can feel that "Theo-ness" around me and in the space where I am. It isn't something that comes suddenly, like all of sudden noticing that he's here or anything like that, more of an overall perception, a feeling that dawns on me slowly at times. I can't really explain it. But Jamie knew exactly what I meant. It feels like he is still here. And somehow, I think he is. But it still isn't the same as having him, nothing at all like having him here.

I was reading a passage from the Bhagavad Gita about the True Self, that Self that never dies, which says:

The Self dwells in the house of the body,
Which passes through childhood, youth and old age.

So passes the Self at the time of death into another form.
The wise know this truth...

Not pierced by arrows, nor burnt by fire,
Affected by neither water nor wind,
The Self is not a physical creature.

Not wounded, not burnt, not wetted, not dried,
The Self is ever and everywhere,
Immovable and everlasting.

There are some who have realized the Self
In all its wonder. Others can speak of it as wonderful.
But there are many who don't understand even when they hear.

Deathless is the Self in every creature.
Know this truth,
and leave all sorrow behind.

I have been thinking a lot about this passage. If I believe what it says to be true, and I know there is no death, then why have do I have such sorrow? Does it mean that I don't truly believe it? I thought long and hard about that. But I do believe it. Maybe it's that I believe, but don't know. But that isn't the case either, because I know without any doubt that Theo exists, Theo's Self, his true essence, is still here, is everywhere, is with me and in me and all around me. I know he sees me and that he feels me and that sometime, I will see him and be with him. I will be able to interact with him and we will talk about all this. But in the meantime, I have no choice but to be here without him in physical form. I hurt because, even if I know that he has not "died", even if I know that the Self, in Theo, in me, in you, in all of us is deathless, he is still not here with me and that is what hurts so much. So I guess I am just selfish and attached to wanting my baby here in physical form and that's just the way it is. I can't imagine being anywhere near wise and enlightened enough that I will not miss having the physical form of my baby here with me. Maybe one day I won't feel so much sorrow, maybe more and more the light will outbalance the dark, but for now, even knowing that there is truly no death, doesn't keep the pain from my heart.

If anyone has tried to comment and cannot, I am sorry. There is something wrong with the system, and probably too with the changes I have made in trying fix the problem myself. I don't know if it will ever be fixed so I opened an email account where comments can be sent. Feel free to send email to babythelonius@yahoo.com instead of posting a comment. Hopefully it will be fixed soon.

I will post reminders about the memorial service periodically. We continue to be thankful for all the support from so many people. I am taking all the stuffed animals we have recieved to the hospital this coming Friday. I also want to thank Jennifer D'Surney Emory who brought many, many more animals to add to the collection. Her baby girl christening was held the day of Theo's funeral and all who attended Campbell's christening brought an animal for Theo. Thank you to all of Jennifer's friends and family for that gesture.

I will continue to post to let you know how we are.

Love,
Karla

Theo's Memorial Service

2006-03-15T17:01:00.000-05:00

This is the photograph of Theo that I was talking about in when I wrote about the one particular picture that made me cry every time I looked at it. It still does sometime. I love this picture. It was taken while he was sleeping a few weeks before he died. We used to love to see him smiling in his sleep. To us it meant that he was happy sometimes. I know that he knew all the time how much we love him, but I worry about how much pain he was in, how uncomfortable he might have been. Because of the damage to his brain--the "neurological devastation"--he was unable to make facial expressions, be socially engaged, interact with us like any other healthy-brained 9 month old. But he was able to smile when he was sleeping. He only did it occasionally but every time we saw his sweet face transformed by his smile, we felt as though we were given a small but precious gift. When he smiled in his sleep, he looked like the Theo we knew before the brain tumor and it was so good to see a tiny glimpse of him again and to know that at least in his dreams-- and he was dreaming, his little eyes moving in quick fluttery REM flickers underneath his lids, dreaming and smiling--he was without pain, without a tumor. He was happy, maybe he was even laughing inside his sleeping, dreaming mind. We used to wonder to each other, "What do think he is dreaming about?" Jamie always said he was dreaming of me. I don't know. I hope he was dreaming of us, of playing, of eating, of flowers and sunshine and happy things.

Next Monday he will have been gone one month. Things are still the same for us, up and down. We miss him terribly. We are still recieving cards in the mail almost daily, and I so appreciate the comforting and heartfelt words from so many wonderful people. Often, bereaved parents recieve a lot of support initially, but say that people tend to forget after a few weeks that the pain for us is just as fresh. The whole terrible event seems to have just occurred. It is good to come home to a card from a caring friends, or a small package from a family member, a bouquet of flowers unexpectedly dropped off, a note telling us how Theo touched a life. All of our wonderful neighbors gave us a card from each person on our block with a gift certificate to an area restaurant they know we like. Thanks so much to everyone for remembering to remember. No matter how small you think a gesture might be, it does not go unappreciated or uneeded. None of your acts of love and kindness are taken for granted. All are significant and are like a soothing balm to our hurt. All the gifts and donations to us and in Theo's name are so appreciated. There is comfort in knowing that so many people hold us in their hearts and thoughts and that Theo meant so much to so many people.

I have many moments throughout the day when I feel so sad and broken hearted, missing him, missing what would have been. Thinking of a life with no Theo is so lonely and sad. In those moments, I can feel the grief creeping in, slowly squeezing my heart and my belly into hard knots. Making me feel anxious and sick to my stomach. Sometimes I indulge in those feelings, taking my mind into the pain, feeling it push through me. If I don't, it only gets worse the next time. Other times the pain of missing him hits me hard, quickly, unexpectedly. Hearing a song we listened to with him but didn't remember was on the cd changer, or hearing a song I'd never heard before about lost love and heartbreak and thinking of it in a Theo context. One of the books I have on my nightstand right now is William Goldman's The Princess Bride (you might know it as the really awesome movie by the same name), and there is a part where the narrator is giving details of the life of one of the characters who happens to be a giant. In this part of the book he compares the weight loss and gain of regular newborn humans to that of the giant babies. I was reading, and all of a sudden I was reminded of Theo's weight as a newborn, his first few days of normal wight loss, his on-schedule weight gain, and the thought of it, of Theo, just made me burst into tears and I cried and sobbed for at least 10 minutes just from reading a fairly inconsequential passage in a mostly lighthearted storybook. Up and down. And like so many parents who lose their children, we laugh, we find things funny; it feels strange to do so, but it also feels good. I know Theo likes it when we are happy. He wants us to be happy. I do know that and I know that he loves us and that he wants us to know.

The date for the memorial service is set for Theo's first birthday, Friday May 26, 2006,
at 7:00 p.m. in the First Unitarian Church at 1000 Blanton Avenue in Richmond.
This is the church next to the Carillon Bell Tower near Dogwood Dell and Maymont Park.

After the service we will have a birthday cake for Theo and some light refreshments. We invite everyone to please come and join us in remembering and celebrating his life. We look forward to sharing this time with all our Richmond family and friends as well as all of you who have been touched by his life through my writing about our journey and who wish to share in his memory. We hope to meet some of the people who have come to know us through his story. Many people have emailed that they wish to come to his service having only known us through his story here. Everyone is welcome.

Love,
Karla

Thelonius Dragonfly

2006-03-10T12:31:00.000-05:00

This dragonfly was designed by my friend Lisa Marshall. This one was a computer version she sent me that I just thought was beautiful. I had enlarged and framed it and took it with us to set up at the funeral home with his pictures. When Lisa came for the visitation, she brought the original watercolor (which I had not seen until then) in blues and purples. She had it framed and matted with the dragonfly and waterbug story that we set up on an easel next to the guest book.
Thank you to Lisa for this beautiful tribute to Theo. (Click on the picture to enlarge it)
Waterbugs and Dragonflies

Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in a while one of their colony seemed to lose interest in going about with its friends. Clinging to the stem of a pond lily, it gradually moved out of sight and was seen no more.

"Look!" said one of the water bugs to another. "One of our colony is climbing up the lily stalk. Where do you suppose she is going?" Up, up, up it went slowly. Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn't return. "That's funny!" said one water bug to another. "Wasn't she happy here?" asked a second water bug. "Where do you suppose she went?" wondered a third. No one had an answer. They were greatly puzzled. Finally one of the water bugs, a leader in the colony, gathered its friends together. "I have an idea. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why." "We promise," they said solemnly.

One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up he went. Before he knew what was happening, he had broken through the surface of the water, and fallen onto the broad, green lily pad above. When he awoke, he looked about with surprise. He couldn't believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings. The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above the water. He had become a dragonfly.

Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by, the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were, scurrying about, just as he had been doing some time before. Then the dragonfly remembered the promise: "The next one of us who climbs up the lily stalk will come back and tell where he or she went and why."

Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water. "I can't return!" he said in dismay. "At least I tried, but I can't keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I'll just have to wait until they become dragonflies too. Then they'll understand what happened to me, and where I went.”

And the dragonfly winged off happily into its wonderful new world of sun and air.

Doris Stickney (1982)

03/07/2005

2006-03-07T11:41:00.001-05:00

I went back to work Monday. It wasn't as difficult as I thought it would be. I have a million things to do it seems--I don't know how I will get everything done--but I expected everyone to be talking to me about Theo, offering condolences, discussing things with me and I didn't want that. And nobody did. A few people just hugged me or said, "Welcome back" or took my hand or patted my back. It was nice. I just can't do a lot of talking about Theo at work, or I won't be able to focus or keep from crying. And I don't want to do that there.

I went yesterday evening to get my taxes done and the lady who does my taxes, who I see once a year, said, "how was your year" and I just couldn't keep from crying. I said, "The last time I was here, I was pregnant". And told the shortest possible version of the story. She was shocked. I guess it isn't what you expect to hear every day. But she was sweet and very helpful.

I am hoping to hear tomorrow or the next day from the lady in charge of the space I want to use for Theo's memorial so that I can post more details and make plans for his service. Keep checking. I will post as soon as I hear with the location, date and time.

We continue to get cards daily and they are so appreciated. Also, we have recieved nearly one hundred stuffed animals (not counting the small ones like beany babies, of which we have about 40) and I know some friends of ours have more animals to bring over. I am planning to make little cards to tie to their arms or around their necks that say something like, "This animal is given with love to you from Baby Theo". I want to keep a few to have at the memorial, but we plan to take a bunch to the hospital in the next week or so.

It's strange, in some ways it feels like everything happened so long ago. I can hardly belive it's only been two weeks, and in other ways it seems just a few seconds ago that he was here with us. All of his things still around me, everything the same, except he is not here. I can close my eyes and breathe in and bring his sweet face to my mind so clearly. I remember vividly the feeling of kissing his soft skin, his little feet, his chubby thighs. Every time I changed his diaper I kissed his legs and his feet, his toes and his knees. I remember the smell of his hair, breathing in his breath with my own. We watched a show the other night about quantum physics, our perceptions of "reality" etc., and in one part they talked about a study done with brain scans where a person was shown something, a candle burning, an event taking place, whatever, and certain areas of the brain lit up on the scan showing certain kinds of brain activity when the event or object was percieved. For the next scan, the subject was asked to simply recall seeing the same exact thing with the eyes closed and, wouldn't you know, the very same areas of the brain lit up, indicating that the brain doesn't know the difference between what it actually "sees" and what it remembers or visualizes seeing. This is why dreams seem so very real to us--to our brains, and without the benefit of waking consciousness, they are real. So it begs the question of who or what really sees or percieves things, events, reality? If it's true then that what we recall or visualize is just as real to our brains as what we actually, in the moment (in reality)experience, that means that in my mind, with only my memory of him, I can completely and authentically, re-experience being with Theo.
And I have been able to close my eyes, see him clearly in my mind, his face, his eyes, his mouth, his little hands, his soft belly, his perfect, soft skin, and feel the love in my heart, feel him, almost as if he is really here with me. The problem is not with my brain, but with my heart, which doesn't forget that he is gone. When I open my eyes, he is not there, neither can my fingers touch him or my arms hold him. And it breaks my heart hundreds of times throughout the day. But it doesn't take away from the memory, the love and the feeling that for just a second, I can almost sense him close by, filling my mind and heart, feeling his love. So whatever reality is, I don't know. While it is interesting, that study doesn't offer me all that much comfort--even if my brain doesn't know the difference, my heart and my mind do.

I have no idea how to go through this--I guess it is a little different and somewhat similar for everyone who must face it. I am thankful that we have each other and that we have so much love and support from so many wonderful friends and family, even ones we have never met.

Love,
Karla

Reading from Theo's funeral

2006-03-05T21:27:00.000-05:00

Etude Realiste
by Algernon Charles Swinburne

I.
A baby's feet, like sea-shells pink,
Might tempt, should Heaven see meet,
An angel's lips to kiss, we think,
A baby's feet.

Like rose-hued sea-flowers toward the heat
They stretch and spread and wink,
Their ten soft buds that part and meet.

No flower-bells that expand and shrink,
Gleam half so heavenly sweet
As shine on life's untrodden brink.
A baby's feet.

II.
A baby's hands, like rosebuds furl'd,
Whence yet no leaf expands,
Ope if you touch, though close upcurl'd,
A baby's hands.

Then, even as warriors grip their brands
When battle's bolt is hurl'd,
They close, clench'd hard like tightening bands.

No rosebuds yet by dawn impearl'd
Match, even in loveliest lands,
The sweetest flowers in all the world--
A baby's hands.

III.
A baby's eyes, ere speech begin,
Ere lips learn words or sighs,
Bless all things bright enough to win
A baby's eyes.

Love, while the sweet thing laughs and lies,
And sleep flows out and in,
Lies perfect in them...Paradise.

Their glance might cast out pain and sin,
Their speech make dumb the wise,
By mute glad godhead felt within,
A baby's eyes.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This poem was beautifully read by my aunt Nancy Helbert Salyer.

Letter to Theo from Mama

2006-03-04T01:52:00.000-05:00

This letter was written in mid-January, for the purpose of being read at Theo's funeral. While I wrote it, he slept beside me on his boppy pillow. I read it at the funeral service after Jamie read his. It was very difficult to get through, but I'm glad we did it. Both our letters were handwritten to him with decorated envelopes and we placed them in his arms after our readings. I originally wrote mine in a journal and re-copied the one for him to keep. Here is a copy to share with all of you:

My Dearest Baby,

I don't know what I can write to you that you don't already know. What can I say that you can't feel? How can I make words come for which there are none? That which is between us is beyond words, beyond pen and paper, beyond language or speech, beyond ritual or tears.

A friend told me once that having children is like taking a piece of your heart and sending it blindly out into the world. Like sending you very own defenseless heart out into an uncertain place where you can no longer provide it protection or shelter. Taking chances every day with your heart.

I know that what we have been through,and continue to go through, strikes fear into the hearts of every mother and father. For this is the greatest pain we can imagine. And when I read this, on that day when I stand before all those who love us and share this testament, I will have then realized that greatest fear. The pain, I'm sure will be like a dark stone in my heart, weighing me down, lingering on. But what can I do? I can be devastated, torn apart inside that you are gone, but I can also be thankful that I was fortunate enough to have known you at all. I can be heartbroken that I will never hold you or kiss your sweet face again, but I can also be happy that I felt you move in my belly, that my body was your home, that I was gifted with the chance to gaze into your beautiful eyes, however briefly.
I was there when you entered the world and I held you in the circle of my arms as you left it. I shared your life, I saw your eyes light up, I heard you laugh, I fed you, bathed you, stroked your hair and felt the silky smoothness of your skin. I breathed your breath and held you close and slept with you in my arms. I gazed upon your face and saw myself reflected in your features. I am thankful and glad in my heart to be your mother.

Though the pain of missing you is terrible and heavy and will be with me all my life, and I will always long for you to be here with me, I know that you aren't really gone. You will be with me always. In the wind and the rain and the sunlight. In every flower blossom, every starshine, every snowflake and autumn leaf. In all that is beautiful and bright is Theo. Every blade of grass, every fluffy cloud, deep velvet night and bright shining morning. In every birdsong and butterfly, in every rainbow reflection on dragonflies wings. In every tear from my eyes, with every beat of my heart, every time I feel peace, joy and love, you are with me. And as long as I have breath, I will love you and keep you close.
Until I can see you again.

I love you my sweet Baby.

Love,
Mama

March 3, 2005

2006-03-04T00:04:00.000-05:00

The last couple days have been difficult. I have had trouble falling asleep and have had headaches. Jamie has headaches, loads of tension in his back and is trying to get through grading stacks of papers for his classes. Last night I couldn't sleep at all and kept thinking about Theo, looking at his bassinet which is still next to the bed, and imagining him there, remembering when he slept there, how he would wake me with his little baby sounds, and if I took too long, he would start to yell to be fed. He didn't care that he needed a new diaper first, he wanted his food! I looked at the bassinet, next to the bed, and remembered him there, sleeping, soft baby breathing, hands thrown up and out, relaxed, open. And my thoughts turned to the very last night he slept there, August 19th, and the morning of Saturday August 20th began replaying in my head. His waking me up that morning at 6:00 with his baby sounds, changing him, bringing him to bed with me, breastfeeding, dozing with him in my arms, both of us sleeping and waking around 8:00, getting up, changing him, playing with him on the bed--talking to him, Theo making his sweet little"oooh oooh" noises, looking up at me, carrying him downstairs, feeding him a bottle, giving him his bath, talking to Jamie on the phone calling from Roanoke ("We're fine. He just had a bath, do you want to talk to him...."), vacuuming the floor, Theo crying, "Shhh..you're ok", Theo quiet, turning off the vaccuum, looking over, seeing him still and pale, running to him, picking him up, blowing in his face, yelling his name, rubbing his legs and arms, him coming drowsily, slowly around, feeling scared, shaken ("Are you ok, Baby? Baby?"); getting him dressed, turning him over to pull his little onsie down and then, his vomiting all over the pack and play, cleaning him, changing his shirt, carrying him to the sofa, putting him on his boppy pillow, watching and watching, scanning his face, every movement, noticing strange, unequal movements on his left and right sides, left eye open, right eye closed--I think he was trying to close his eyes and couldn't control his left eye. Theo becoming agitated, coughing, leaning him forward, holding him, throwing up again, cleaning him, getting frantic, talking to the pediatrician on-call, trying to feed him sugar water, sleepy, didn't want it, throwing up a third time, leaving qucikly to go the emergency room, seeing myself standing alone in that big room watching my tiny, new, perfect baby, wrapped up in blankets to keep him still, have the first CT scan of his life, watching the light move across his cheeks, his nose, forming the + over his face for proper placement, not knowing how many more of these there would be to come--feeling alone, scared, empty, terrified, so sorry for him, so small. Thinking of his pain, his headaches we didn't know about, what he must have experienced....All this going through my head, pictures, flying by, I couldn't stop the thinking and some piece of me wanting to remember, wanting to watch it, never to forget. That day when in the space of a moment, just a second, everything changed. I know now that he had a seizure--that was the very moment that everything changed. When I looked over and saw him lying there on his pack and play, still, pale, barely breathing. Even when he came around and regained his color, started breathing normally, he wasn't the same and after that, things happened so fast, so fast. And I know that maybe it isn't good for me to replay these things over and over, not when it doesn't necessarily help me, but I did it because I wanted to remember, even though it was painful, and then I couldn't seem to stop the images even when I wanted to. I couldn't stop crying. I couldn't stop seeing him, small, helpless, sick. There are several moments in time which stand out with very precise clarity through this whole six month ordeal, some things I don't recall as clearly, but that morning, that day when everything changed, when it all started, is so clear, every single second. I can stop, start, skip, freeze frame, rewind, fast forward. Wondering, worrying. The ER doctor at St. Mary's, "de beby has blood on de brean", "What? What do you mean blood on his brain!?"....Looking out the window at St. Mary's ER, on the cell phone, looking away from the nurses trying to find a vein in his baby arms and legs for hydration, feeling so sorry to have to tell Jamie over the phone, "come home, the baby is sick.... CT scan...blood in his brain. Please drive safely"...Worrying, worrying....Riding in the ambulance to MCV.... more tests, MRI.... Jamie finally there safe with me..."It's a tumor, m'kay?" ....No, that was not "m'kay". Not m'kay at all. It was never okay again after that.
I finally got out of bed, crying as quietly as possible, nose completely stuffed up, not wanting to wake Jamie and took a long, hot bath, talked to Theo, felt a little better and finally went to sleep around 2:30 a.m.

Turns out that Jamie woke up just after I fell asleep and couldn't find sleep again. He got up and took a shower before coming back to bed.

Today we talked to a man down the street who lost his son in a car accident--killed by a drunk driver--a year ago. I remember when it happened, I was pregnant. It remember thinking "How awful for that family". He saw us walking down the street today and came out to talk to us. He had seen Theo's picture in the obituary.
He told us it gets better with time, although he also said that he still cries every day for his son. He said his wife does not, she holds it all in and has really suffered because of this. He encouraged us, mostly Jamie it seemed, since he was looking at him, to cry when you feel it, "just let it out, get it out. It will be better for you that way". I saw a tear squeeze itself out the corner of his eye and track it's way through the lines around his eyes and then down his cheek. He hugged us.

My friend Lisa said that now we are members of a club that nobody wants to be in, and only the members really know what it's like to be there. Yeah. It's a club I wouldn't wish for anybody in the world to have to join. And that's another thing, you don't get a choice about it. None of us would choose it. But we have to keep paying the dues I guess. Whatever they are. I think they must be different for everyone, maybe similar, but each is different. But we should pay them, if you hold out, you end up like that guy's wife--bitter, sad, broken inside, holding it in, not knowing what to do with all the locked up grief and pain, not able to heal. I hope I sleep better tonight. I still don't want to move his bassinet or any of his things just yet. It's too soon. I want to feel him near me. As much as I can.

2006-03-01T15:03:00.000-05:00

I just thought I would post and let everybody know how we're doing. I just finished copying and pasting all the previous entries and comments into a separate word file on our computer in case anything happens to the blog. While I was doing that, I read through all the comments-- and some of the previous posts--all the way back from the beginning. Some of my posts really just broke my heart. Ones where I was so hopeful, where I recorded that I saw his eyes focus on me (which I did) and where I said "Yay! He's sucking!" He only sucked a tiny bit that day, but it was enough to inspire hope that I would be able to feed him again. Looking back, I just got exhausted reliving all that, even in the space of 45 minutes or so, and only scanning it. Skipping through, being struck by certain phrases, certain moments in time. I was also really touched once again by so many of the comments throughout this whole past six months. I don't know how many of you realized that Theo left us on February 20, 2006, exactly 6 months to the day from when we first went into the hospital on August 20, 2005.
It seems like years ago and in some ways, just like last week. Of the more recent comments, I noted one posted by a girl I haven't seen since high school --- now a woman with her own children --- who was worried by posting a comment as his funeral was starting that she might be in some way invading our privacy. I thought about that and although I have mentioned and thought many times about the many who have followed Theo's and our story through this blog, I really have no idea how many people have really come to know us through this. How many people I have allowed up to the window of our lives. And how there is no way that Kelly could invade our privacy when I voluntarily opened the shades for the world to see in. It started just as a quick way to notify people of the situation and then to update everyone on how he was doing day-to-day without having to send out several emails or take or make so many calls. But it turned into something else, something that has helped me personally in so many ways--sharing my thoughts, even when I have kept much of my private thoughts and pain inside... I have shared a great deal, letting unseen, unknown tens, hundreds, maybe even thousands, for all I know, into our little world. This chronicle has been healing to me, helping me to maintain some objectivity and at the same time explore my feelings, hurts, questions, fears. It has allowed me to share my wonderful baby's life with so many people, all of whom deserve to know him, or at least know of him. And he deserves to be known. And above all, I hope our story might help other people who might be experiencing similar nightmares, or who have done so in the past. I want to continue to write about how we are moving through this next stage of our grief and pain, for all those same reasons.

Yesterday I took the original draft of the "Theo and the Baby Angels" story handwritten by my aunt Dolly with a sketch she drew of me and Theo, to be matted and framed. A man named Ned, who had helped me the day we were leaving to go out of town for the funeral by on-the-spot framing a picture of a dragonfly with Theo's name in the wings (created by my friend Lisa) was there to help me again. I reminded him who I was and he asked how I was doing. He looked at me very seriously, paused, and said, "You never get over it." I told him I didn't think I would. With tears in his eyes, Ned told me about his son Christopher, who was born January 13, 1971 and who died of a vascular problem on February 2, just two short weeks after his birth. We talked, and I was so thankful that he shared his story with me. There are so many people who have lost their babies, who still miss their children, who still feel the hole left in their lives every single day. I hope that Theo's story and our story can somehow help people to know that they are not alone. And help other people who know families who have lost a child, something of what it's like.

As I said before, grief comes in waves. I went to the grocery store yesterday and it seemed there were children and babies on every aisle. And I swear they were looking right at me, directly into my eyes, and they looked as though they knew that I was a mommy without her baby. They looked kindly at me, with love. They made me feel very sad, but somehow comforted and even though I did get teary eyed, and cried a little in the spice aisle, I was ok. Some things make me cry a lot, others don't. Yesterday, the big trigger was a picture we took of Theo just a few weeks ago. He was smiling in his sleep. I loved that he smiled sometimes in his sleep. Jamie sometimes would stand over him with a camera while he slept hoping to catch that fleeting little smile that lit up his sleeping face, just for a moment. Those brief smiles meant to me--to both of us--that he had happiness, he had good, sweet dreams and in them, he was happy. Some way, even with a nearly completely damaged brain, he was able to have lovely, happy dreams and to smile in his sleep. That one photo made me cry yesterday every time I looked at it. Yet I couldn't seem to keep my eyes from it.

And I wondered this morning when I woke up, how many mornings until my first thought is not, "My child is dead"? But we are able to laugh sometimes and love each other, be there for each other. We enjoy moments through the day, especially ones we can share. I am so thankful to have Jamie. He is a wonderful father and a wonderful partner. He took such good care of Theo and he is taking good care of me.

I am very grateful that we had the time we had with Theo. I can only imagine the great pain of parents who wake to find their baby dead in the crib of SIDS or the parents whose child dies suddenly in an accident or the untold horror of the family who may not even know where their child may be, whether she is alive or dead, or a family who knows for certain their child died a violent, malicious death.

We have been fortunate in many ways. We had sacred, peaceful, love filled times with Theo even in the midst of pain and suffering, ours and his. At least we had that.

But the pain of losing our child, no matter the cause, as Ned shared, will be with us the rest of our lives.

Thank you again for all the love and care--the cards, flowers, gifts, support, everything you have all done to help us. Nothing has gone unappreciated. I will continue to post our story. I will share my letter to Theo and details of his memorial service dates and such. Please check back.

Love,
Karla

2006-02-27T21:57:00.000-05:00

We just got back in town this evening. We are pretty exhausted. I am very touched and grateful for the comments everyone has posted.

There were so many people at the visitation on Friday night. People I hadn't seen in years were there. Family and friends from near and far--Wise County, Richmond, Roanoke, Indiana, Ohio, North Carolina. There were so many beautiful flowers with dragonflies in almost every arrangement. Many beautiful gifts and cards. We had a photo slide show playing so people could see what he was like.

The whole night was rather surreal too. People after people after people. Theo lying in his little coffin. The day before, we had gone to see him at the funeral home and it wasn't anywhere near as difficult as I thought it would be. As soon as we saw him, we just knew it wasn't really him. It was like a statue of him. A Theo look alike. I have seen a lot of dead people in my life, and I am always struck by how different people look without their spirits. Without themselves inside the body. It's amazing really. I wrote a story for one of the kids I work with who had lost both of his grandfathers to help him understand death better and in the story I talked about how our spirits leave our bodies just like we walk out of our house, or a car leaves a garage, or we take our clothes off at the end of the day. And it is so true. Our bodies are really nothing but a house for our spirits, our true selves, and as soon as we are gone, the house is really nothing. Knowing this and seeing it plainly in front of me made it easier to see him lying there. Not easier for him to be gone, but easier to be with his body. He was completely gone from it. It wasn't quite the same as when he was here with us right after his death. His little body was without the Theo spirit, but it hadn't quite started to change so much yet. When our nurse Donna came over she said, "This might sound awful, but I've seen a lot of dead babies and he is the prettiest one I've ever seen". And he was. He looked so peaceful. Really as if he were sleeping. People always say that about dead people, but I don't think it's usually true. They look that way at first glance, but if you really look, close up, you can tell that they aren't sleeping at all--they just aren't there. By the time the funeral home people came to the house to get him, around 7:00 p.m., I could see his that his little body was already starting to change. Blood was pooling in the veins of his little ears, which were mostly purple by the time we saw his body at Carty's funeral home in Wise (we tried to cover his ears by pulling his blanket up around them). He had gotten very cold by 7:00. I covered his little hands in his mittens and wrapped him up tight in his blankets. I carried him out to the van that took him away for the last time. We had spent time with him just after he died, held him, gave him a bath, dressed him. That was a very special time. I was also thankful that I was able to arrange his blankets around him and put his little rosary in his hands at the funeral home. Being able to do those things for him, bathe him, dress him, make his blankets and things nice--those things were very important.

The funeral service itself was beautiful. Jamie and I read letters to Theo, my aunt Nancy read a "Etude Realiste" a poem by Algernon Charles Swinburne and a story written by my aunt Dolly who could not be present for the funeral. Jamie's sister Meg read "Goodnight Moon" which I read to Theo almost every night. The music was beautiful, played by Kim Wright who also sang "Bright Day" a song written by Virginia musician, Terri Allard. I will post all these things, my letter to Theo, poems, stories, lyrics, on the blog a little later in the week. Thank you everyone who came to the visitation and the funeral to show your love and support for us and for Theo.

The weather was nice, not too cold, although it did get a bit chilly on the mountain at the graveside. We had a balloon release while everyone sang "I'll Fly Away" together.

There were lots and lots of stuffed animals. I haven't counted them yet. My dad brought a lot back in his car and my cousin is boxing up the rest to send this week. We will be donating these to the Pediatric Intensive Care Unit and the Pediatric floor of VCU's medical center (formerly known as MCV) where we spent a long, long four weeks.

We also want to encourage donations to Noah's Children non-profit pediatric hospice and palliative care program. They have been so helpful and supportive to us. While donations to other cancer research and support organizations are wonderful as well, I know that I hope for families in our position to conttinue to have the opportunity for the help and support of such a wonderful organization as Noah's Children. Knowing your child is dying, going through the emotional upheaval, the fears, the uncertainty, the awkwardness of not knowing who to talk to, or what to say, feelings of alienation, devastation and heartbreak, are alleviated somewhat by people who know how to help. Dawn, our Noah's Children social worker and chaplain, was there for us when we needed her and continues to be. They follow their families for at least a year following the death of the child, offering whatever help is needed, to whatever degree the family needs, whether it's a listening ear, someone to help with planning for the funeral, guidance through the dying process, whatever is needed, at any hour. Their services are invaluable and the organization depends on donations. No child needing their services is ever denied care. Please visit their website at: http://www.ivna.org/nc.html

We are doing ok. It comes in waves. We'll be ok and then just start crying. Or see a picture of him and just miss him so much. I pulled out some pictures my friend Pam took of him that she included in a card and was just struck by how beautiful he was and how much I miss him. It hurts so much to think about never seeing him or touching him or holding him ever again.

We stopped Sunday night in Roanoke and spent the night in the Marriot in a room with a king sized bed and a big sunken jacuzzi tub (right in the room), took a long soak, ate sandwiches and cold fried chicken in bed and had a nice night together. We were both just exhausted. I really wanted to take a long, hot bath. When we asked the guy on the phone if they took animals (our dog Chloe was with us), he said they only allowed service animals. I said, "What about seizure dogs?" (cause no way could she pull off trying to pass as a seeing eye dog!) He said, "What are they?" and I said, "Dogs who sense a seizure coming and let you know so you can take medication or sit down, get prepared". He replied, "Do you have papers?" and I said, "No", and he said "Is the dog marked?" And I realized, I didn't know enough about it to pull it off and said, "No, we don't have papers and she isn't marked, we are coming from our son's funeral and didn'e expect to need to stay the night. We have three more hours to drive to Richmond and we are just really tired" and he paused and said, "She should be ok, just use the side door". We had a really nice, relaxing night and I think Chloe liked it too.

Today Theo has been gone for one week. In some ways it seems like a long time and others, it hardly seems like one day. Now, I am going to bed. I wonder when we will ever feel rested.

I will post again soon and share some of the letters, poems and songs from the funeral.

Love,
Karla

2006-02-21T18:39:00.000-05:00

I am sorry to tell everyone, Theo died yesterday February 20, at 3:33 p.m. in my arms and with his Daddy's arms around both of us. He finally left peacfully, but this whole last week has been really terrible. All weekend, we were just watching and waiting. We are both doing ok right now. We feel so greatly relieved that he is not in any more pain and is no longer suffering in any way. I went out today to run some errands and it felt so strange not worrying about what was happening at home, not having to get back to check on him, not getting up in the morning to the sound of his breathing and giving medication after medication. We know he is peaceful and happy now. I told Jamie yesterday, now Theo can fly. The following is the obituary that I wrote. It will be in several papers later on in the week. The Roanoke Times, Wise County's Coalfield Progress, Kingsport Times, Bristol Herald Courier and The Richmond Times Dispatch. The funeral will be held in this weekend in Wise County, near my hometown. We have a family cemetery there. It's on top of a mountain with beautiful views. I didn't feel right having him anywhere with a bunch of strangers. It is very far away, but I know that he isn't really there and really, it's a day's drive when we want to visit. We are having visitation hours Friday evening from 6-9 at Carty's Funeral Home in Wise VA and the service will be in the funeral home chapel on Saturday at 1:00 p.m. with a short graveside service afterward. I sent out a separate email with directions and hotel information. Please know that we do not expect anyone who lives in Richmond or other far places to travel for the funeral. We are planning a memorial service for him in Richmond later on. If you do choose to come, we will be very honored to have you there. We'll be leaving town tomorrow, Wednesday and will be staying with my mother in Norton VA. I believe her number is listed with information should anyone need it. We love you all and know that you love us and are thinking of us.

The Dragonfly has flown

2006-02-21T18:31:00.000-05:00

Thelonius Luther Helbert Fueglein, 9 months old, died peacefully at home in Richmond, VA on February 20, 2006 of a brain tumor. In his short time with us, Theo touched untold numbers of people. In knowing him, his family and friends experienced love and compassion that will resonate throughout our lives.Theo is survived by his parents Karla Helbert and Jamie Fueglein, his grandparents, Luther C. Helbert and Dyanne Helbert, his great-grandmothers Virginia Helbert and Betty Wood, his aunts and uncles Meg and Erich Faber and David and Julie Fueglein, many cousins and extended family. His paternal grandmother Marge Fueglein passed away the day before Theo's birth. Theo's parents are very grateful to friends and family who have supported us throughout. We also would like to extend warm thanks to Theo's nurses, doctors and caregivers who provided excellent care and support.

Visitation hours will be held at Carty's Funeral Home at 1621 Norton Rd. S.W. in Wise, VA on Friday, February 24 from 6:00 p.m. to 9:00 p.m. Services will be held in the funeral home chapel on Saturday, February 25 at 1:00 p.m. followed by a short graveside service at Colyer Cemetery. Flowers or stuffed animals are welcome. All stuffed animal gifts will be donated in Theo's name to VCU Medical Center's pediatric intensive care unit. The family also encourages memorial donations in Theo's name to be made to Noah's Children pediatric hospice program. Donations may be sent to Noah's Children, Office of Gifts & Contributions, IVNA, 5008 Monument Avenue, Richmond, VA 23230.

Friends may call on the family at the home of Dyanne Helbert in Norton, VA. A memorial service will be held in Richmond, VA at a later date.

2/19/06

2006-02-19T09:40:00.000-05:00

He is not doing well. I thought Friday that he wouldn't make it through the night, and definitely not the weekend, but now it is Sunday and he is still here. His breathing is very labored, he continues to wheeze and sound as though he can't get enough air. We got a fentanyl nebulizer to help with that, but it doesn't seem to make a difference. We also got a suction machine delivered last night because he started having very wet sounding breathing and a few times tried his best to cough. The suction machine does make a big difference though and seems to help him with his breathing. Whenever he starts that wet, sloshy sounding breathing, we suction him out and while he doesn't really like the tube in the back of his throat, he breathes better afterward. He doesn't seem to have a gag reflex at all anymore, which is really a good thing, I guess. He has brief times when he stops breathing for several seconds at a time, but these periods are very irregular. As people get closer to death, they have longer periods between breaths, but it seems more regular than what Theo is doing right now. Dr. Massey, one of his hem-onc doctors and Elizabeth, one of our nurse practitioners, came to the house Friday night to observe him and to try to come up with a better plan to keep him comfortable. Dr. Massey calculated a new methadone dose based on the amount of morphine he was getting at the time and ended up increasing the dose to 4 ml of methadone every 6 hours and keeping the morphine at 3 ml every 2-3 hours as needed, but with the new methadone dose, we have not needed the morphine as often. Methadone has a longer half-life than morphine, meaning it stays in his system longer and would therefore control pain better and longer. So now, he is on these new doses, along with the ativan, now up to 1 mg every 3 hours or so as needed, the steroid decadron to help with any swelling in his brain, and his phenobarb was increased again due to its sedative ability, and all the rest of his regular medicines for constipation etc. We have decreased his food intake considerably, only giving about 3o ml of formula when he gets his decadron, since it should be taken with food. When someone is very close to death, digesting food takes up precious energy and may create it's own kind of pain. He is continuing to have several wet diapers a day. He had a fever last night of about 101 and got red-hot, we gave him some tylenol and it went down. That's another thing that we can expect--seeing his temperature fluctuate. Most of the time his extremities are very cold, his cheeks and ears and nose, hands and feet.

This is by far the worst time yet--except for maybe back in the early days when we didn't know what would happen from minute to minute. Waiting to hear from the surgeons, watching the chemo administered, seeing him in pain. The last several months have been so much more peaceful, sharing sweet times with him, seeing him resting, comfortable. Now he is just in something like pain, constantly agitated, uncomfortable. We are keeping him sedated most of the time with the chloral hydrate. I don't know if he knows it's us anymore. I know he knew us for a long time, up until just a few days ago, even when the doctors thought that there was no way that he should be able to have any kind of recognition of anything at all. But now, other than on the most spiritual level of feeling, I don't know if he knows we are here. I have to believe that he feels our love though. He feels that.

This waiting and watching is among the worst things we have experienced yet. As long as he is peaceful, it wouldn't be as difficult. But at times, he even has labored breathing and wheezing even knocked out on the chloral hydrate. We are, again, just watching and waiting. I will be home tomorrow. We are taking each day as it comes. I will keep you posted.

Please continue to pray for us and most of all for Baby Theo, for peace and calm and relief from suffering.
Love,
Karla

2/17/2006

2006-02-17T09:43:00.000-05:00

Here is one of Theo's very first pictures. This is him on his first morning after his birth.

His daddy brought him this premiere birthday cake.

He isn't doing very well right now. We are still having a lot of problems controlling his agitation and discomfort. We are basically keeping him asleep most of the time so he doesn't cry and struggle. Jamie talked to our nurses and doctors already this morning. They are coming to the house this evening to observe him and try to come up with a better plan. We just want him to be comfortable. I don't want him to be asleep constantly though. The chances that he will go in his sleep are high and I feel ok with the thought of him going during the night, even if we aren't awake, but I would like to have time with him during the days and I don't want either of us to be away from home when it happens. I am worried that I won't be there. Jamie is worried that he won't be there. We are both worried that we won't be there. It is very important to both of us to be with him when he goes. Even if we are asleep when it happens, we will have been near him. I know we can't control the timing, but his being asleep all the time increases the chances that he could just go at anytime, day or night. I know that sounds silly, he could go anyway, day or night. It's just that during the days, one of us is always gone except for on the weekends. I still have to go to work three days a week and Jamie has to teach on Tuesdays and Thursdays.

I want to be home with Theo, but I also know that I will have to take off time later. It is a really terrible situation. I can't take FMLA (family medical leave act) time because I used all of my allotted 12 weeks per calendar year for maternity leave. I have to rely on my accrued PTO (paid time off) and I know I will need to use it later for his funeral and afterward for a few days. Plus, I feel a lot of pressure to get things done at work before I have to go out. I just feel so conflicted--If I take off now, how long will it really be before he goes and then how long will I need to take afterward? It's just awful. And without FMLA, I can't take off more than two weeks.

I have been thinking a lot of last May when I was getting ready to go out on leave before he was born. I was frantic to get things done and ready for someone else to monitor while I was out. Even though I had a due date, I didn't really know when he was coming and I felt like I had no control over what was happening. Now I don't know when he is going and I feel like I have no control over what is happening. The parallels are not lost on me.

In addition to everything else we are dealing with, one of our cats was badly hurt last night and I had to take her the emergency vet. We thought she had been hit by a car, but the vet said she was attacked by a dog or other animal, she was covered with saliva and blood. We didn't hear an attack though. She must have tried her hardest just to get back to the house. We found her meowing outside next to my car in front of the house. She had several injuries and was exhibiting neurological difficulties, unable to stand or focus. Luka was put to sleep peacefully at around 9:30 p.m. She was purring as she went. She was very old and had a good life. For us, it was just very sad and one more awful thing to deal with. Jamie stayed home with Theo and our neighbor Wendy went with me for support. The vet gave us a paw print with her name imprinted in clay. She is to be cremated and her ashes spread over a farm in Hanover county this weekend.

I will continue to keep posting updates about Theo. If you haven't checked the blog in a while, please read the next couple postings. I have shared some special things in the last couple posts.

Love,

Karla

February 15, 2006

2006-02-15T13:42:00.000-05:00

I just wanted to give everybody an update on how things are going. Recently, Theo has become much more agitated. He usually is very calm and content during morning and daytime periods and begins to show more agitation toward evening. That has been his usual pattern of behavior for some time. His agitation decreased quite a bit when we started the methadone as a regularly scheduled med three times a day. We would usually have to give a dose of morphine and ativan in the evenings to help him calm down. Beginning this past weekend, he woke up early Saturday morning and immediately began showing signs of agitation. He couldn't fall back to sleep for several hours even with multiple doses. He stayed in a fairly agitated state most of the day unless he was sleeping--and even that took several doses of morphine and ativan. Once we had to give him his choloral hydrate during the daytime just so he could get some relief. He did this Saturday, Sunday and Monday. On Tuesday, we talked to our nurses and doctors and upped his dose of methadone to 1.5 ml 4 times day and increased the dosage of the morphine a half milliter as needed. This seemed to help some yesterday afternoon, but he was fairly agitated this morning. Our nurse practitioner with the hem-onc group told us it will take about 24 hours to get the full effect from increasing the methadone dosage. People with brain tumors frequently have cerebral edema--swelling of the covering of the brain--which can cause increased agitation. So he is also now taking a steroid to counteract this swelling--decadron--4 times a day. I really hope this helps.

There are a lot of other options that we can look at to help him with control of agitation and pain if this doesn't seem to do the trick. I hope it will though. The difficulty of this already barely tolerable situation is multiplied a hundred fold when we have to watch him cry and squirm and be in a state of agitation/pain--whatever it is--and be unable to offer him any comfort. We feel even more helpless and heartbroken. We want him to be as comfortable and peaceful as possible throughout this process.

They say that he doesn't feel or percieve pain like we can, but they can't really know what he feels or experiences. When he cries and arches his back and moves his arms in jerky motions over and over and breathes in that stridorous way, there is for certain something wrong and it doesn't feel good to him, so, we hope this will help right away.

********************************
I want to share another story with you. Not everyone knows about our experience with the dragonflies so I wanted to write about that. This whole saga began on a Saturday morning in August (if you want to read about it in detail, go to the archive section and click on August and scroll all the way down to the first entry). We were with him at the hospital all that day and evening, finally leaving around midnight to go home to sleep some. We live only a few miles from the hospital so, we felt ok about going home for a few hours. We got up very early Sunday morning to return to his bedside. The sun was shining and everything was kind of still like it is in the early morning. People were still at home, having breakfast, getting ready for church, sleeping late, doing Sunday morning things, and we had the streets to ourselves. We stopped at a light on Leigh Street and a dragonfly flew over to the car and hovered at the windshield. I said, "Look at that!", as the dragonfly bounced up and down. He seemed to be looking in at us. The light changed and we drove on as he flew up and away. At the next light, he flew over to the windshield a second time. It seemed as if he was following us.

Later that day in Theo's room on the 7th floor, I was gazing out the window, which I did a lot when I couldn't stand to look at my baby lying in the big hospital bed, hooked up to lines and machines, in pain and suffering. As I looked out at the city and the sky, a large dragonfly flew up to the window and hovered there. He began to bounce up and down and once, he bounced right off the big glass window before zipping off. I was astounded. That window was pretty high up. I thought then that the dragonflies must mean something. Jamie teases me about how I think everything means something, but I knew that this wasn't some random flight of insects. The thought of Jamie's mother, who had passed away as Theo was being born, came into my mind and I wondered what that meant.

I started seeing dragonflies everywhere. They followed us each morning as we drove to the hospital for about a week, bouncing and flitting against the glass when we came to stops. After about a week of steady stop light appearances, they tapered off and only appeared a few more times on drives to the hospital. But it seemed dragonflies were showing up all over the place; our nurse wore a scrub top with dragonflies on it, my mother showed up at the hospital wearing a dragonfly t-shirt, a friend came to visit Theo with rhinestone dragonflies on her sandals. There was a pretty, colorful dragonfly tabletop nightlight on sale at the gift shop. I purchased it to light up Theo's room at night. I put it on the wide ledge of his window and we were able to see the colored lights from the street and blow him a kiss from the sidewalk.

After I returned to work, following his first week in the hospital, I was out with my friend on our lunch break when we decided to stop into a clothing store briefly before returning to work. As I pulled into a parking spot, a huge dragonfly, the biggest I've ever seen, flew over to the windshield. Pointing, I said, "Look!" He hovered there for several seconds as I relayed to her all the previous dragonfly sightings. We were in the store maybe half an hour. When we returned to the car, the dragonfly was still there flitting around the car. I stopped near the car door and he hovered in front of me, slightly above my head. He was only about 2 feet away. I felt that I could reach out my hand and he would land there. But I stood very still looking at him. I could see the light bounce off his silvery wings as they fluttered. His body was huge and shimmered blue and green, the color of peacock feathers. His big round multi-sectioned eyes were orange and shiny and I thought I could see the many reflections of myself repeated there. He appeared to be looking right at me. I said, "Hello." and he just continued to hover, as if he were waiting for something. I told him, "I'll be going the hospital this afternoon" and at that, he flew upward, bounced in the air a few times and then bounced over to Jessica and back toward me as if to say, "Who is this?". So, I said, "That's Jessica. She's my friend". Then he flew away.

A few days later I did some research on the internet and found that dragonflies have rich symbolism in many different cultures. In some Native American mythologies they represent the spirits of the dead and also stand for transformation and metamorphosis. Their presence can signify renewal and rebirth as well as instability and change. In Zuni myths they are shamanistic creatures with supernatural powers who bring messages from the gods, traveling freely between the physical and spirit worlds. Japanese samuri frequently wore representations of dragonflies on their helmets to symbolize swiftness and strength. I still don't know exactly what the appearances of the dragonflies means, but I know that it felt magical to me and gave me a sense that we were being watched over, guarded and protected. I also felt a sense of wonder and peace when they appeared.

In some ways, to me, Theo is the dragonfly. I will never see another dragonfly, in nature or art, or anywhere else, without thinking of him. To me they represent his strength, his beauty, his delicacy and the power of his spirit. They remind me of the changes we have all gone through along with the great wonder and beauty we have experienced throughout his life. So next time you see a dragonfly, please think of Theo and send out love to him and all of us.

Love to everybody--
Karla

MRI Results

2006-02-03T10:57:00.000-05:00

We went yesterday for an MRI to check on the status of the tumor. The day went much more smoothly than the last time. The nurses remembered us and the radiologist who spoke with us this time didn't know his history, but was so much more open and compassionate and interested and didn't make us feel like numbers in a system. Also, we fed Theo his breakfast and gave him all his medicines so he wouldn't be hungry and miserable. When we first got there they asked when he had last eaten (which was just a couple hours before) and almost made us wait four more hours, but Jamie talked to the doctor and explained that Theo gets chloral hydrate at bedtime every night, usually right after his last feeding, and then they didn't have a problem going ahead. We didn't have to wait at all and the whole thing went really smoothly. We went to the hematolgy/oncology department after that for our appointment with them to review the scan. All our oncologists were there and also Dr. Ty, the neurosurgeon who works with Dr. Ward and who put Theo's shunt in. We hadn't seen Dr. Ty since before we were originally discharged in September. He reviewed the scan with us. The tumor has grown considerably and is now the same size it was when it was originally diagnosed in August--6x6 centimeters. It's very different though now because the tumor is surrounded by very large pockets of fluid. At the last scan, there were a few small pockets of fluid near the tumor growth, but now it's a large mass of tumor surrounded by a big pocket of fluid. The midline of the brain has shifted over and basically the whole right side of his brain is now taken up with the tumor and the fluid. Because of the atrophy of brain tissue--there is basically no healthy or normal brain tissue--the tumor and fluid have been able to expand considerably. In other words, if his brain tissue was normal, the tumor would have already killed him at this point. As the tumor continues to grow, it will eventually begin to press on the brain stem which will depress his breathing and most likely he will go to sleep and not wake up. He may also have a seizure which could result in death. The doctors raised his phenobarbitol dosage yesterday to hopefully counteract any seizure activity that may occur. We think he had a seizure on Wednesday. He just kind of "froze"--stopped moving, breathing, eyes staring off--for about 15 seconds. When Jamie nudged him, he snapped out of it. Shortly after that, his eyelids and eyes began twitching for a few seconds. He hasn't had any more episodes like that, but we raised the phenobarb anyway and if he looks as if he is having any seizure activity we will give him a dose right away and some ativan which is also prescribed frequently for seizure in addition to relief of agitation. They said that he doesn't have a pain perception like me or you and probably doesn't experience pain at all. But when I told them about how he gets really mad when I open his hands or how he cried when I accidentlally nipped his finger cutting his nails the other day or how he clearly knows the difference between me and other people (he is much calmer and content with me and he knows when Jamie holds him too), they were really surprised. So he is still "there" on some level. But, the tumor continues to grow. At this point, nobody knows how long Theo may still be with us. He could go anytime or it could be a month or two. Not more than that.

Even though we knew what the image would show, it was hard to see it and hear it. It's like it just takes us one step closer. I know he is going to die, I will just miss him so much and I just wish that none of this had ever happened to us. Which is pointless, but I can't help it. It's isn't that I can't accept it, it's just hard. I don't want to have to accept it. I feel very peaceful about Theo and this whole situation on many different levels--it's just on other, selfish, mother levels, I just want my baby back and I don't want him to die. Even though I know that is what is happening.

I had an experience in the hospital with Theo back in September, just after we found out about the damage to his brain. At that time, about a week before we were discharged, they found an infection in his blood. They were waiting to get the test results from cerebral spinal fluid to determine whether the infection was in the shunt or not. If not, it could be simply treated with antibiotics, but it if it was a shunt infection, the treatment would involve more brain surgery. One procedure to remove the shunt, and then another to replace it, putting a new one in the opposite ventricle (which had already undergone the insult of the intial tumor resection). We discussed it and decided that if the infection was in the shunt we would choose to forgo the treatment in order to avoid more surgeries to his little brain. After we knew that his brain was so damaged and his quality of life in the future would be so compromised, avoiding any more pain for him was our whole goal. That was our reasoning behind the decision to discontinue the chemo and any further brain surgery. But to not treat the shunt infection would be to determine that he would die within the month. Without treatment, the infection would grow to a case of ventriculitis resulting in death in a matter of weeks. Jamie had gone home for the night and it was late. I sat next to the bed with my head on the mattress near Theo's head. I felt that we had made the right decision, it seemed right to me, but I still had some doubt and fear. I was talking to Theo and saying that I hope we were doing the right things for him but I just didn't know. And in a moment of quiet, I felt and heard a little voice in my head and I knew clearly that it wasn't my own voice. He said "It's ok Mommy, I am ok. I have done what I came to do and whatever you decide is ok with me. I am ready to go", and I felt this great wave of love and peace wash over me and I knew that he would be fine and that we had unquestioningly made the right decisions. I also knew then for certain that I had agreed, before either of us were born into this life, to bring him into the world at this time and to be with him through this because this was what he needed to do. This is his path and I agreed to walk it with him. As much as it hurts now--I have asked both him and God, "Why?" so many times--Why couldn't he have grown up, lived a life--he could have done great things, been such an incredible person, a teacher, a leader--I know that I did make an agreement with him and that all of the pain and hurt that I am experiencing now stems from my own needs and desires and my attachments to him. None of which I am condemning, it's normal--I can't get around having those feelings, he is my child after all. But I also know that he is already a great teacher and he has already touched so many people's lives--more than many of us do in a whole long lifetime. I know that he and his life will continue to touch people even after he is gone. I think that is also part of my agreement with him. I know that all he required in this life was the time he spent in the womb, this short time in this physical body and then he is going on to something else.
Not necessarily something better--just something else.
I can't stand when poeple say "he is in a better place" of people who have died, to me or to any parent who has lost a child. To us, there is no better place than here in our arms. But I also know that I will see him again. None of that makes this easy. I am grateful that I am able to keep an open heart, that I don't want to hold him here at all costs, that I want him to go on to his next big thing. Because of that, this process has held many beautiful moments for all of us and has been easier than it may have been otherwise. But I would trade every good thing that this experience has brought and will bring in our future, to just have him here. To be a regular mom who yells at her kid for stupid stuff, who makes mistakes along the way, who gets mad over little things, who feels bad that maybe I didn't do it right (whatever it is), who has to deal with normal kid stuff, who gets to see him grow and play and get into trouble and learn from his mistakes, and fall in love, and graduate and get a job--and all those millions of things that people see their kids do. But I have also been really lucky to have had the time we have with him. Lucky to have known him and to share my life with him even for a little while.
Anyway, I really just wanted to share that--only a few people know this story and with the news of the MRI yesterday, I hope that in sharing it, it can help others to know one more special, beautiful thing about our baby Theo.

Love,
Karla

2006-01-27T17:40:00.000-05:00

2006-01-25T17:41:00.000-05:00

I just wanted to add a couple more photos (now that I know how to do it, it's easy!) and let everybody know that Theo is doing ok. He was a little fussier than normal yesterday, but he is doing better today. We had to go to the hospital Monday to have some more of that granulated tissue removed, but he did fine. I think it might come back though, it looks a little pink around there already. He may be prone to that stuff--he had some of it back when his cord fell off and he had to have the silver nitrate on his belly button (the real one, not the surgically placed one).

That seems like a lifetime ago. It is so hard to believe so much has happened to him--and to us--in his short little life. I have never had any surgery at all and my 8 month old baby has already gone through 7 surgeries. Tumor resection, ventriculostomy twice, shunt placement, central line placements in his femoral artery and in his chest, gastrostomy. There are days when all of this feels like it's just crashing down on me--weighing me down. So many of you write me and post comments about how strong I am and how wonderfully I handle all of this--and even though I can't tell you how much I appreciate your comments, they really do help me feel better-- it doesn't feel like that to me. We both just try to get through each day as best we can and give him the best love and care we can. There are days when I feel very fragile, when I feel like crying at every little thing, days when little things really bother me and all of a sudden I will feel cosumed by anger or sadness. Days when I feel self-pity--which I try hard to avoid, but I know it's inevitable. It's normal to feel that way. A normal way of dealing with loss. But there are times that I can't seem to avoid it and I slip into that feeling that life is so unfair and I want to stomp my foot and cry and scream. There are times when I am in a place with lots of families and children--and I don't mean places like DisneyWorld or even a playground--normal places like the mall or Target or the grocery store on a weekend--and I find myself wondering at the sheer number of healthy children --and at those times it seems they're everywhere!--all these healthy children all over the place who don't have brain tumors, how did my child happened to be the one in 30,000,000 (that's thirty million) who does? And please don't think that I would wish it on any of those children, I wouldn't, but I can't deny that feeling that I wish it had not been mine. Especially when I see babies around his age, sitting up, sucking on their hands or anything else they can get in their mouths, looking all around, jabbering on in their baby talk--I just can't help but think "that's what Theo would be doing now". He was so bright and alert and already studying our faces, making vowel sounds "ooo ooo ooo" "Oh oh oh" back at me. He would probably be saying words now! And now we have this new baby who we love and cherish who doesn't do those things, but is sweeter than anything else in the universe and who spends all his time teaching us how to love him better, helping us to keep our hearts open even as they break and we do that just because of him. I know in his short time on this earth he has touched more lives than many of us do in a whole long lifetime of decades upon decades. But it still doesn't keep me from desperately wishing that this had never happened.

Anyway--please continue to keep us in your hearts.
Love from all of us--
Karla

More photos....

2006-01-18T17:39:00.000-05:00

A few more pictures......

2006-01-18T17:30:00.000-05:00

These photos were taken by Patricia Lyons, a wonderful Richmond photographer who graciously donates her time and talent to create family potraits for families receiving services from Noah's Children. She came to our house to take the photos a couple weeks ago. We are really happy with the pictures and so thankful that she has done such a wonderful thing --for us and other families. We didn't have any pictures of the three of us--except for when I was pregnant (!) and that's not quite the same thing. Here are just a few of the beautiful photos. We have so many to choose from it was hard for me to decide which ones to get printed.

01/11/2006

2006-01-11T20:26:00.000-05:00

Today we went to get the button placed in Theo's belly. Our nurse practioner Nancy came in and asked if we had the kit and we didn't know what she was talking about. She had ordered the button placement kit from our home health providers and they were supposed to have brought it to our house and we were supposed to bring it to the hospital with us today so it could be put in. They didn't have one for us there at the hospital. We hadn't heard anything about it and didn't have any idea this was what was supposed to happen. Had we known, I would've called the home health people and made sure we had what we needed. Nobody contacted us about it. I thought we were going to have to leave and come back another time. None of this made any sense to me at all considering we were in a HOSPITAL and not just any hospital but a huge, highly renowned TEACHING hospital that has EVERYTHING. But Nancy went and searched and was able to find us a kit that had the right size for Theo and everything was ok. I think I might just have lost my mind if we had had to leave without getting his button in today. Anyway--he did pretty well. He cried a little bit when the old one came out and she cleaned all around it and the tissue. I couldn't do it myself. She wanted one of us to put it in and I thought that I would be able to do it, but I just couldn't. After pulling out the tube that had been in since December 19--A big red hole was left, you could see straight down into the stomach. It was a really strange and a kind of sick and sad feeling to see an open hole all the way down to your baby's tummy. And then to have to try and put the apparatus in yourself...After the day that I had to replace Theo's ng tube (in his nose)at home when the prevacid clogged it up and he sneezed blood and screamed and screamed, even though I had done it several times prior to that incident, I have been barely able to do hold it together to do those kinds of things. I just can't stand thinking I'm hurting him in any way. I can barely stand to take his tape off.
Since we have had the old tube, the worst part was changing the dressing and taking the tape off (he hates that), but the thing always looked like it was about to slide right out of him and appeared to be hanging by a thread, which, literally, it was being sewn on with only one stitch keeping it in place. It made me so nervous and scared to try to replace the tape after a bath or to try to push the tube back in when it was pooching out a little (when he would cry or scrunch up his abdominal muscles--or when he accidentally pulled the tube with his arm). So, anyway, I tried to put the button in, tried to be cool about it and perfom the procedure that I may have to do at home if something happens, but by that time, the hole was more irritated--or the stoma which is what the medical term for the opening is called; any outside opening leading into an organ--It was bleeding from being moved around and irritated, and he had granulated tissue around the opening which is this raw meaty looking tissue that forms around the tube when the body is not happy about the foreign object inside it. Apparently this granulated tissue can be very painful. Nancy put silver nitrate on it to kill the blood supply to it and it will eventually fall off, and then after all that, I was supposed to push this button thing into his belly. I tried, but it seemed to require an awful lot of pressure to get it in there and I was afraid I would hurt him and I just couldn't do it. Nancy did it for me. She said that most of the time the buttons stay in for 3 to 4 months. If we need a new one put in, our home health nurse Donna will, I'm sure, be able to help because I just don't think I can do it. Maybe I could, once it heals up better. But while the concept is kind of like changing an earring, like I mentioned before, it's nowhere near that easy. And the emotional strain is obviously nothing like changing an earring.

There are many days when I feel pretty good. When I feel that I am handling all this very well--his feedings, his dressing changes, his acid reflux gagging (which is way better, but does still happen sometimes), the invisible tumor, the overall situation. I've made arrangements and plans for his funeral service, what the program will be like, poems we want read, music to be played, his Theo celebration DVD, the balloons came today for the balloon release I want to do---all these heartbreaking details that are day to day life for me--I think I deal with it all as best I can without too much self-pity or even an excess of grief or pain. I want to be as much a part of his leaving as I was in his coming and his being and if I have to face these things, I feel fortunate to be able to put thought into them and do my best to do all of it out of love for Theo. But there are little things that get to me, when I am not expecting it. That creep up and clench my stomach, reminding me of how terrible everythign really is. I could never maintain that level of hurt all the time, so when it shoots back, it always surprises me. Like today with the button---I just couldn't do it. And seeing him there on the table with a hole in his belly and this foreign button device half sticking out of him and me trying to push it into his soft baby belly--I just couldn't do it. I felt this big vise around my heart squeezing and squeezing and I couldn't stop thinking "My baby has a hole in his stomach. He has a hole in his stomach and it hurts him", not to mention the tumor in his head and I just wanted to cry. I only cried a little bit though. I was ok. I didn't want to lose it in the hospital. Nancy was really helpful and helped me to understand that it is nothing like normal to have to have a tube in your baby's stomach and there is nothing wrong with feeling upset and sad. And she's right. None of this is normal and I'm not supposed to feel normal. It's normal not to feel normal.

I got really nervous again when it was time to feed him once we got home and I couldn't get the lock-on tube to hook on properly. The button has a little flap that pops off and then the tube has a piece that fits into the button hole and then it turns to lock. Then you can safely put the food or medicine down the tube and into the belly. When he's finished, you twist the tube back to the unlock spot and lift it off. I felt worried the whole thing was going to pop out or I would hurt him twisting things on and off. I had to take an ativan to calm down. I got him fed though. Jamie is already fine with it. He is much better at those technical things, the equipment, the med doses and times, he's never off schedule. It's a good thing too--I need him to help me feel better about it.

Speaking of Jamie, tomorrow is his birthday and we are going to spend the day together, all three of us. We are going to pick up Theo's finished DVD tomorrow morning so that will be a really great treat to see it finished. We are planning to go out to dinner tomorrow night and my dad and Jennifer are coming over to babysit Theo.

Again, I want to thank everyone who has written encouraging comments and emails to me. Hearing from others and knowing you are thinking of us and praying always helps me to feel not so alone. Thank you--

I'll keep you updated. The next major thing is his MRI coming up on February 11th to check in on the growth of the tumor and see where we are.

Love,
Karla

1/1/06 Theo Relaxing on Christmas

2006-01-01T14:40:00.000-05:00

12/31/2005 New Year's Eve

2005-12-31T14:12:00.000-05:00

I added to the page Theo's photo with Santa. We went to have the picture taken following his doctor appointment on December 21 (Winter Solstice). He was so calm and peaceful that day.
Our Christmas was quiet but nice. We were very sad over the holiday. I am really glad it's over. For me, it wasn't so much this actual Christmas holiday, so much as how sad I felt knowing that future holidays will never come to pass. There will be no more Christmases with Theo and so much that I hoped for and looked forward to with his birth will not happen. All the tree decorating, present opening, cookie making, driving around seeing the lights, all the family traditions that we won't be starting with him. Thinking of all those things that we'll never do together made me feel so sad and hurt and empty inside.
We did have a small tree this year and my mom and grandmother brought lots of nice gifts and so did my dad. Theo got lots of cute, cuddly outfits and a new quilt to keep him warm and new books for us to read to him. It was good to have my mom and my grandmother here. We had Christmas dinner and rode around to see the lights on Christmas night. Theo fell asleep on the car ride--he loves to ride in the car. He for sure knows that lots and lots of people love him and that's all the gift he really needs.

Tonight we are planning on staying home with him and bringing in the New Year with him at midnight. He is almost always awake at that hour and we plan on toasting him and giving him the first kisses of 2006. We'll have some champagne and he will have his formula since his last feeding of the day is around midnight. He did get tastes of sugar, honey and chocolate syrup over the holiday--we rubbed a little bit of each on his tongue. He didn't have much reaction to the honey but smacked his little lips over the sugar and the chocolate. I couldn't really tell whether he liked it or not, but at least he got to try some tastes on his little tongue.

I really appreciate all the supportive comments I have gotten from people on email and on the blog about my last post regarding the attitudes and reactions of others to terminal diagnoses and death in general. The support from people who care about us and who have had common experiences, whether with dying parents and loved ones or with struggles with their children with disabilities, is so helpful to me. I am reading several books right now, each a little different, but all having to do with dealing with grief, bereavement and loss, and they all speak of how crucial it is in these situations that the bereaved or grieving persons are not alone, how much the support of others determines how well they deal with the loss or tragedy. Knowing others care about us, empathize and sympathize with us, makes me feel less alone, lessens the pain a little bit. And I know that it will only get worse for us before anything gets better. I know that there will be a time when I won't be able to imagine it ever getting better at all. We're not there yet. I am not looking forward to that time at all, but I am trying my best to be as prepared as I can.

I am slowly I think coming to a place where I am beginning to accept that brain tumors that cause irreparable brain damage and ultimately death--and other tragic things like disasters, sickness, accidents, violence--are not things that God can intervene in--or otherwise He (or She or the Universal Spirit or whatever you call the Divine) would. If I don't believe that, then I can receive no comfort at all spiritually and I don't believe that I could get through this, and all the days that are to come, on my own, without feeling that I can recieve help from some higher power. Harold Kushner the rabbi who wrote Why Bad Things Happen to Good People (and whose son died from a progressive, terminal disease) writes that can believe one of three things about God---that either 1) He is all powerful and sometimes chooses to intervene sometimes not, 2) we deserve what we get and God allows those bad things to happen to us, or 3) there are some things God can't control, things that are subject to laws of nature. Which, in Kushner's view, God created as unchangeable for good reasons--like gravity is a good thing because it holds us all on the planet and keep everything in place, but doesn't get reversed to save a child from falling off the second story balcony. All the things we are taught to believe, if we pray hard enough, if our faith is strong enough, that God can do anything, that nothing is impossible, all those things only set us up for heartbreak and bitterness when they don't come true. Those things cause us--cause me--to bargain with God, to make promises (if only my child will be healed I will do this or that) which is just ridiculous becuase if God was going to do something why would He need to extract some promise from me to do it? To beg God, which is also useless. Those kinds of beliefs cause us--cause me--to only feel abandoned, cast aside, unworthy, alone, angry and then guilty for being angry. Those beliefs cause us --me--to think that maybe it is my fault--maybe I didn't have enough faith. Thinking which then leads to the possibility that the unfaithful are then responsible for teh tragedy out of their lack of faith. I am not responsible for Theo's tumor and brain damage. I would do anything to save my baby and take away all the hurt that he has been through over these past four months. I can hardly believe it's only been four months--it feels like a lifetime. But those kinds of beliefs are useless and dangerous and harmful. And very, very hard to get past. Even when intellectually, I know better. Emotions and desperation have considerably more pull than intellect when your baby's life is at stake and being threatened. And when those kind of beliefs are reinforced by people around us, it only makes it more difficult to resolve feelings of guilt and inner conflict. Do you know that a woman at my job--who I am not at all close to-- actually told me that perhaps it was my doubt that was keeping my baby from being healed? How someone could say such a thing to another person going through the pain of a child's illness and impending death, I can't even imagine doing such a thing. Anyway--I am trying to come to a place of peace, where I can be comforted and strengthened by Spirit. Just my writing all this down tells me that I'm not quite there yet. But the most positive thing I think is that I really believe that my negative feelings are comiong from me, from residual teachings of my childhood that are not serving me well at all now at this most devastating crisis of my life and that behind all these feelings is something else. I think that there is peace and comfort from a Source greater than me and when I am able to resolve my own inner conflict, it will be there for me. Indeed, I am sure that that Source is helpign through all the conflict and searching and confusion that I have been trudging through since August. It's like swimming through mud, trying to get to clear water.

I know that the coming year which is fast upon us will be full of more difficult times and holds a future that I cannot look toward with any hope, except the shred I hold that we can get through it intact physically, mentally, emotionally and spiritually. I know that it will get worse before it gets better, but I know it is possible to get through it--forever changed, but at least intact and still able to live life and find some happiness even if seems impossible at times. I also hope for the continued love and support that all of you have shown us. We wish you all a beautiful New Year of 2006, filled with love and peace.

Love,
Karla

12/19/05

2005-12-19T15:54:00.000-05:00

Theo is home and doing very well. We were discharged on Saturday night and got home around 8:00 p.m. He slept all night and most of Sunday as well. He seems to be doing ok with the pain and we're keeping his morphine on about a four hour schedule. We see Dr. Haynes (the surgeon) on Wednesday for a check up and to make sure that everything is as it should be.

Having the tube removed from his nose has already made a huge difference in his comfort level. His breathing is easy now and without that labored sound it had. He hasn't gagged or coughed at all and I'm sure his throat must feel better. And once the site heals around the tube, I think he will feel even better. Right now we have to be careful not to jostle him too much and be very careful when changing his diapers, holding him or moving him. But as long as he gets his pain medication regularly, I think he will be ok. We will probably start backing off the morphine to every 6 hours tomorrow and eventually we'll go back to giving the methadone three times a day and morphine only when he is very agitated. Prior to the surgery, we were only giving the morphine once or twice a day with the methadone schedule.

I've been thinking about the stress of the whole surgery day, with Dr. Haynes not coming to talk to us, the residents forgetting to put in an order for his medication before surgery to keep him comfortable, and I wonder whether it would have happened if Theo was a child without a terminal illness. I don't know whether it would have been different, but I think it would have. I'm only speculating and fully aware that I am severely biased, but I think it makes a difference. I think overall the medical community has a very hard time dealing with those who are dying. When they are powerless to heal, when all their efforts to eradicate the disease fail, I think the tendency is to move on to those patients whom they can heal. I think it is much easier to be less invested, or to "forget" about a patient's family waiting to hear about the results of a surgery which will not heal their child, but only make him more comfortable--which is not a small thing, it's quite a lot, in fact. I have heard nothing but good things about this doctor, particularly his bedside manner and the way he deals with patients and their families, which is why we chose him to do Theo's surgery on Friday. To forget about us, to fail to update us on how the surgery went, how Theo was doing, where he was being moved and when, seems very out of character compared to all I had heard.
I wonder if this situation is more of a general reflection on the medical community and society's discomfort with death in general and particularly the death of a child. It's not something anyone wants to talk about. When I do talk about it, if I happen to feel comfortable enough to bring it up or if someone asks how he is doing--and it's never a simple answer--and I tell them the prognosis, they immediately get very uncomfortable--even when they already know. Initially they are always concerned and sympathetic but once I say that he is dying or tell them how long we have with him, they look scared and uncomfortable, and steer the conversation to another topic--How Jamie and I are doing, whether we need anything, how work is going, whatever. And then there are those people who insist that I "shouldn't say that", that I should "not lose my faith" and that miracles can happen, that he will be healed and other things. I know some people believe those things, but other people say those things because to talk about the reality of the situation is too stark, too painful, too unfathomable. Even in the hospital, the discomfort on the faces of some of the nurses and doctors is evident when we talk about the prognosis and why we have made certain choices. I know, better than anyone, how terrible it is to think about--it isn't just any child dying, it's my child--but I also need to think about it, to plan for him, to come to terms as best I can before it actually happens. Even though I know that no matter how prepared I try to be or think I am, I may just fall apart--I don't know what it will actually be like when it happens.
I wonder how different all this would be, if death was something that was accepted as part of life in our society, as the sacred passage that it is and what it would be like if we weren't so afraid to talk about it. Dying patients (of any age) and their families should be made to feel just as comfortable and be treated with the same importance and respect as those patients with illnesses can be treated and healed. Don't get me wrong, we have been very blessed to have many wonderful people helping with Theo's care who are comfortable with us and our situation and who are incredibly supportive and understanding--our home health nurse Donna (who is just wonderful and loves Theo so much), Dawn with Noah's Children Hospice care, Dr. Ward, several of our oncologists and the nurse practitioners there, our PICU nurses--any many people in our personal lives who let us talk about it and sit with us through it--but a great many of the health care professionals who have been in and out of Theo's life and many, many people outside the medical field are very uncomfortable around us or would just prefer not to deal with it. And they don't have to, it's just something I think about. Even as I write this I feel the need to aplogize for being morbid, for offending anyone, or making anyone uncomfortable. And I wish I didn't feel that way.

Anyway, I will keep you updated---as always, keep us in your hearts.

Love,
Karla

12/16/05 11:00 p.m.

2005-12-16T22:57:00.000-05:00

I just got home from the hospital. Jamie is staying overnight there with Theo. I stayed up with him last night till about 2:00a.m. and am super tired.

The procedure went really well and he is doing great. He is having some pain from the incision and the tube placement, but as far as I can tell, it only really bothers him when it gets jostled around--like diaper changing or sitting him up if he slides down the pillow. They're giving him his regularly scheduled methadone plus morphine every 4 hours overnight and probably tommorow as well.
They are telling us that he will most likely get to come home tomorrow. When these g-tube placements go well and the child can tolerate feedings well, they get to leave pretty soon. So that's good, it'll just be another thing to feel nervous about learning and doing correctly until we get used to it. It's amazing how used to these things you get--I just have to not really dwell on thinking in detail about what I'm doing--flushing the tube coming out of his chest, pushing meds through a tube in his nose, and now maintaining and caring for the newest tube coming out of his belly--which is placed next to the tube running from his brain into his abdomen...
Anyway--we are really relieved that he is doing so well, especially after the incredible stress of the day. We got there at 7:30 this morning--They called yesterday evening (I can't believe it was just yesterday, it feels like several days have gone by) and told us that he was now scheduled at 9:30 a.m. and was first on the list. So, we were glad not to have to be there at 6:00 and pleased to hear that he was first on the list. We got everything packed up this morning except his medicines because I figured he would be going under anesthesia before he would start to miss his morning dose of methadone and then after that, the hospital would supply all his meds. Well, of course, you know that went wrong. I should've known better. We waited in the lobby area for a couple hours and then went back to the holding area where we waited another couple hours. An emergency procedure had come up that had to be attended to first, which was entirely understandable, I was just concerned about Theo getting hungry and cranky and especially that he had not had his methadone at 9:00. They told us they would order him something to "take the edge off" and forgot about us for another hour. By 11:00 a.m. he was missing his second meal of the day and still hadn't had any drugs. So after having asked twice with no results, I got really upset and nearly turned into Shirley Maclaine in "Terms of Endearment" demanding medication for Debra Winger (if you haven't seen that movie, see it--it's great, plus you'll know what I'm talking about). Finally, they came in and gave him some versed--a medication that puts you in la la land pretty quick and he was fine and then we were fine. I really hate getting like that too--I just don't understand why they can't understand what we might be going through. They took him back for the surgery at almost noon. They told me it would be a couple hours and then he would go to recovery. We weren't allowed to go into the recovery room with him but they would call us as soon as they were getting ready to go up to his room so we could walk up with him. The surgeon was supposed to come out and talk to us after the procedure to tell us how it went. We went down to get something to eat and were gone about 30 minutes. They give you these big round pager things (like you get at Outback steakhouse that blink and vibrate and beep obnoxiously when your table is ready) so they can get in touch with you when it's time for the doctor to talk with you or whenever they need to get you for something. The pager didn't go off and didn't go off and continued to not go off--so finally at 4:00 I went to ask the desk woman to please find out if things were ok. She couldn't figure out who "Theeolonus Figbar--Fegbeck--what is his name?" was, finally located him and said, "Oh, he's been finished, he's up in his room on the 7th floor". I could feel my eyes get all big and crazy, and I almost couldn't form a question, but finally asked how long he had been up there, and the desk woman said, "Just ask the nurses when you get up there how long he's been there". She didn't even know what room. I was incensed. Livid. I mean, who does surgery on a 7 month old child and doesn't come tell his parents how he is or even that he is out of surgery?! And then takes him to another floor, to a room without a number and doesn't tell anybody?!
We went up to the 7th floor and, of course, had to stop first at the security table. They had no record of Thelonius Fueglein in their patient book, they didn't know where he was. I just about lost it and the security guard said, "Just go on back ma'am, and talk the nurses". We found him finally in a room with three other babies. I was so relieved and so totally pissed off at the hospital. He looked really tiny to me in the big crib bed, but he was alert and calm and his color looked very good. He was fine. The nurses told me he had been up there for about a half hour. They finally got the doctor on the phone and he apologized several times saying the whole thing was his fault, that he had been called away to an emergency and he had told his staff not to talk to us becuase he was going to come right down and talk to us as soon as he took care of the emergency situation and then he simply forgot. So, there we were. I was still really upset. Everyone on the floor was super nice to us after I expressed my frustrations and the nurses and the other doctors on the floor seemed very sympathetic. They gave us a private room. The staff have all been extremely attentive all evening. Theo is doing ok and that's the most important thing. So that was our surgery adventure for the day.

Tomorrow we will learn more of how to take care of and use the tube. The one that is in there right now is a temporary one --kind of like starter earrings that you get when you first get your ears pierced. You have to leave the starter ones in for a while until the holes heal up enough so that they won't be sore and won't close up when you put the earrings you like better in the holes. We will get a "button" in a few weeks--the button is like the better earrings that you like instead of the ones you have to have because of the new piercing. Right now there is a long flexible tube with a cone thing on the end hanging out of his belly. Once the site heals, that tube will come out and we will go into the clinic and put in a shorter tube with a little button thing that sits flush with the skin so there is no tube thing hanging. When it's time to eat or give medicine you just pop the little cap off the button and insert a tube with an end piece called a key that then turns to open the button and then just put the food or medicine in. When it's done, you turn the key part back to lock, remove it and put the cap back on the button. That will be in about 3 weeks or so. Changing it won't be a painful thing at all--it will really be like changing an earring. We will also have an emergency kit at home to put in a new one ourselves just in case the tube comes out. They told me that until it heals though, if it comes out, we have about 30 minutes to get a new one in before it starts to close up.

It's a wonder people who are piercing crazy don't get this procedure done just for a new, shocking, avant garde body art thing.

I'm really tired now and am going to bed so I can get up early and get to the hospital with Jamie and the baby.

Keep sending us the positive thoughts and your love---
Karla

12/14/2005

2005-12-14T16:29:00.000-05:00

Theo definitely has a cold. I said in the previous post that I thought that's what it was at first and then changed my mind, but following that post, he began sneezing a lot and producing tons of snot. He ran a fever on Saturday of 101.7 and threw up several times. When I called the doctor, he told us that babies frequently throw up when they have colds due to swallowing excess mucus. The fever came down after giving tylenol and he slept most of the day and night all weekend. He still has some problems with coughing and gagging with lots of snot, but he is definitely feeling better. Jamie caught Theo's cold and is wearing a mask around the house and in general feels crappy. I have been taking Zicam and that Airborne stuff to fend it off and I think I have been pretty successful, no signs of any cold.

Jamie met with the guy who is putting together the DVD for us and I think it is going to turn out really well. We spent all weekend going through every one of the video tapes we have made of Theo since his birth and all the photographs, picking out the best ones for the DVD. It was really hard to watch the videos of Theo, especially the clips where he is trying so hard to imitate our facial expressions and to talk. Just before all this happened, he had just begun clearly studying our faces and trying to imitate our facial expressions and sounds. There are couple of clips where he is making his "oh, oh, oh" sounds and they just broke my heart. There is one where I am sticking my tongue out at him, rolling it. You know how some people can roll their tongues up? I remember learning in high school how that's a genetic thing. In the video, I am holding Theo on my knees and he is looking up at me while I roll my tongue at him asking him whether he can do it and you can see him thinking so hard and studying my face, working his little mouth and me sticking my tongue out at him over and over and then-- I don't know if it was coincidence or not, I don't think so--but he sticks out his tongue smiling and it is so cute!

Watching him on video evoked the strangest mixtures of feelings, first feeling the happiness, remembering, almost reliving, the feelings of the moment, laughing and happy, proud of his progress and his effort, and then being struck by this incredible sadness and longing for those times with my baby, regreting that they were so short and fleeting, wishing for it all back. Feeling the shaky, anxious flutterings in my belly, the clenching feeling around my heart, pressure in my chest, tears stinging my eyes. Knowing that I will never see him do these things again, that all that is gone. All this while holding my baby Theo in my arms. I looked down at him and it struck me so poignantly how drastically he and we have changed. It is like having a completely different baby. It's as if the baby in the videos has already gone. We have a different Theo and new relationships with our new Theo. And the heartbreak of knowing that the Theo we have now will only be with us for such a short time and then we will have to say goodbye to him too. He is so sweet and soft and warm, every second we have with him is spent holding and caring for him and loving him. Smelling his head, kissing his sweet face, his feet, his chubby little legs.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
We go in on Friday at 6:00 a.m. for the g-tube placement. We are both feeling a little nervous about it. He will probably be in the hospital for 2 or 3 days. We just hope that all will go well and that this will provide some comfort for Theo and for us. But first he has to get through the surgery and then the healing. I will post after surgery on Friday afternoon to let everyone know how he is. After surgery he will be in what they call a "step-down" unit. Our home nurse Donna, who used to work in the MCV PICU, told us that a lot of the PICU nurses also work in the step down unit, so maybe he will have some of his PICU nurses who love him so much. That would be a huge relief to us. We'll just have to wait and see.

Please keep us in your thoughts and prayers.

Love,
Karla

12/9/05

2005-12-09T15:05:00.000-05:00

Theo is doing ok with his new medications. We have had to give him morphine on an as needed basis mabye once or twice a day. The methadone is given three times a day instead of every 2-3 hours like the morphine. He has had some trouble with the choralhydrate. It puts him to sleep pretty quick, but it really upsets his stomach. As soon as we give it to him he starts gagging and spitting up. Some nights he tolerates it better than others, but it always bothers him. And it's no wonder, it smells terrible, like furniture polish. He usually goes to sleep while he gets his last feeding and then wakes up some time after, sometimes earlier, like 2:00 a.m. and other times around 4:00, so whenever he wakes up, he gets the chloralhydrate and then he usually sleeps till 7:00 or so. Jamie says that when he stays downstairs with him, he sleeps less and always has a horrible time with the chloralhydrate, throwing up and gagging terribly. Who knows what makes the difference from night to night?
Over the last couple days, he has been sneezing a lot and gagging and coughing up a lot of mucusy stuff throughout the day. At first I thought maybe he was getting a little cold, but I don't think that's what it is. I think the tube is just really bothering his nose and throat. So, we are still taking turns staying downstairs with him as long as he continues to have these gagging and choking problems. He has his last feeding at midnight and since he's been gagging, we slowed his feeds down so that it takes about 2 hours to finish, he gets his methadone dose at 1:00 a.m. and then the chloral hydrate at some point during the night after he wakes. We stay with him so we can be right there to sit him up when he gags and to clean him up if he spits up and to give his medicines. We are getting a little more sleep than we were before the methadone and chloralhydrate were added, but he still needs one of us to be right there with him. Hopefully, after the g-tube is in place, he won't have the breathing and sneezing problems although I don't know whether it will help with the gagging. That has definitely gotten better since we started the prevacid, but Dr. Haynes told us the tube may not stop the acid reflux and he might still have those problems even after the surgery. We'll just have to wait and see. Since we are able to sleep a little when he is sleeping, particularly after the dose of chloralhydrate, I think it's been easier. We are both still really tired and mentally and emotionally just exhausted all the time, but I don't expect that to change for a long time.

We have been looking up different video/photo services to put together a DVD of photos and video of Theo with music. That is our latest project. I want to have a little montage of still photos and videos of Theo. We want to use Thelonious Monk's famous jazz composition 'Round Midnight which is, of course, Theo's song since he is has the same name (except without the "o" a the end) and having been born at 12:02 a.m., as well as this really pretty lullaby song I love called Night Owl. We haven't picked a third song yet.

I'll continue to keep everyone updated--please keep us in your thoughts and prayers.

Love,
Karla

12/01/2005

2005-12-01T20:59:00.000-05:00

Everything went very smoothly yesterday for the MRI. They were an hour behind and Theo did great. He hadn’t had anything to eat since about 5:00 a.m. and none of his medications but he remained very calm and content until about 11:40 (an hour past the scheduled time for the MRI). I did get a little upset with the radiologist, or rather, I took my frustration out on him, when he came in to get yet another history. Two people had called from the department earlier who wanted to know all his history—the diagnosis, the treatment, the surgeries, and “now, tell me again, why was the chemotherapy discontinued…” . I had asked one of the people who called why, when the whole thing was on record in that very hospital did people continue to require me to tell the whole story over and over. They didn’t have a very good answer and neither did the radiologist when I asked him why I need to give the history 5,000 times. In addition to having talked to those two people on the phone I had not 5 minutes earlier filled out a bunch of papers asking for diagnosis, surgeries, medical problems, reason for the scan, etc and I was very thorough in filling out the form. So when Dr. Whatever-His-Name-Was came in and said, “I just need to get a little history…ummm, what brings you in for the scan?” I just about flipped out. At that point Theo was also getting fed up, was feeling hungry and wanting his morphine I imagine, and he was crying. So that wasn’t pleasant, but I gave him the history anyway, just to get it over with, and of course he was all apologetic, but didn’t have a good reason either for why they can’t just freaking access the history or simply read the paperwork I filled out. Finally, the nurse came in and gave him the chloralhydrate to sedate him. He was totally out in about 2 minutes, went through the MRI beautifully and was able to open his eyes for the nurse to show that he was ok (after a lot of tickling and undressing and rubbing with a cold cloth) and then immediately went back to sleep for about 6 hours.

Today was the big meeting with all the doctors to review the results from yesterday’s MRI.

The tumor shows new growth.

It is back and is currently about one fourth the size it was when it was removed in August.

There is no news that would be good news at this point, but I am relieved that that the tumor is back. It’s a terrible thing to think and to feel, but it is preferable to the alternative. That he would live his whole life, however long it might be, with this severe brain damage, never developing, never growing up, never doing anything more than what he does right now, is unthinkable to me. I would never want a life like that for him. Or for us. So these results today, although heartbreaking and now giving dreaded certainty to our fears--we know now how limited is our time with our sweet boy--at least they confirm that he won’t have to live his life severely impaired, unable to function and with little to no quality of life in the long term. I have so many mixed feelings I can’t even begin to describe all I am feeling, but I can say that relief is high on the list. I am sure that more grief and sorrow and pain and hurt and confusion is waiting in the wings, but I am relieved just to know, to have some concrete knowledge of what to expect and what is happening.

Dr. Ward can’t say how fast the tumor is really growing because they grow exponentially. The new growth started with one cell, that cell divided into two and those two divided into four and four turns into eight and so on. So, the bigger it gets the faster it grows. I asked specifically for a time and he said that he really doesn’t know for sure but if he had to guess he would say three to sixth months. It could be a little longer, probably not less than that.

We wanted to know what to expect when the time comes, what behavior to look for, what symptoms we would see. Dr. Ward said that Theo would get more sleepy, less active, harder to rouse. He might just go to sleep and not wake up, or he may have some difficulty with his breathing toward the end. If you’ve ever been with someone at the time of their death, or very near death, you may have heard that kind of breathing; labored, rattling, long pauses between breaths. He may do that, but he may not. I just hope it will be very quiet and peaceful for him and for us. It’s strange to think how undramatic the whole thing could be and yet when it happens, I just know my whole world will crumble. No matter how prepared I think I am or might be, I know that I won’t really be ready or truly prepared when it actually happens. Nobody ever is.

The ventricles look really good, much smaller than the last MRI done in mid-September before our discharge. This shows that the shunt is working well and keeping the pressure down in his brain. This ensures that he won’t have any headaches, nausea or other symptoms caused by pressure in the brain as the tumor grows.

They also asked about his current behavior and how he’s been. We told them about his sleeping difficulties, his problems with the acid reflux, the breathing problems with the ng tube and about our visit to Dr. Hanes.

Dr. Ward said he thinks the surgery for the g-tube would be a good idea and would ultimately make Theo more comfortable. And if he thinks so, then I feel okay with it. They were all also very concerned for us, staying up with Theo all night, never getting enough sleep. So they spent a lot of time talking about his medicines. They put him on methadone to replace his regularly scheduled morphine. We will keep the morphine and the ativan to give on an as needed basis, if he gets really agiated, but the methadone will be his regularly scheduled pain medication. It’s stronger and won’t need to be administered as often. Although they did say that they don’t think he is in any real pain, that his agitation is most likely neurologically driven—a result of his brain damage. But regardless, the medications calm him and he is definitely more content when they are given. So we don’t care if he is merely being sedated, it is better than watching him cry and scream and arch his back and be overall miserable. The doctors seem to agree. And if there is the slightest chance that he might feel any pain, I want to take it away completely.

When we were discussing Theo’s not sleeping at night I said, half kidding, “Why don’t you give us some of that chloralhydrate, that knocked him right out” and they just said, “Ok, we can do that”. So we now have the chloralhydrate to give at bedtime so he will (hopefully) sleep through the night. It’s a very commonly used medicine for sedation. He got it for the MRI yesterday and had gotten it previously for MRIs while we were in the hospital and my dad said that it’s frequently used in pediatric dentistry, but I didn’t think they just gave it to people to use at home. I guess Baby Theo might be a special case.

Chloralhydrate is very fast acting. It's used in tranquilizer guns to sedate wild animals and is also the drug that people are talking about when they say somebody “slipped him a mickey”. Evidently, back in the day when sailors used to come in for shore leave and pick up “girls”, the “girls” would “slip him a mickey” and then rob the sailor while he was out. So starting tonight, we are slipping Theo a mickey at (our) bedtime and hopefully he will sleep through the night and so will we. Although, for the next 24 hours he has to get his scheduled morphine every 2-3 hours along with the methadone so he won’t have withdrawal symptoms. After we get him on a regular methadone schedule, he won’t have to have morphine every 2-3 hours and we will all be able to sleep through the night—knock on wood and keep your fingers crossed.

That’s about all I have to report for now. His surgery for the g-tube is on for December 16th early morning. That is the next big thing. I will keep up posts in between to let everyone know how he is doing with his new medicines and how we are doing with sleep and everything else.

Please do keep us in your prayers and in your thoughts.

Sending love,
Karla

November 23, 2005

2005-11-23T10:32:00.000-05:00

I just wanted to let everyone know that our surgery date for the placement of the g-tube has been rescheduled to December 16. The surgeon forgot that he will be out of town on the 9th. Of course, he may not be getting the surgery at all depending on the results of the MRI on the 30th. That is next Wednesday. We will know the results on Thursday. I have so many mixed feelings about it. I want to know what is going on in his head--what is happening with the tumor-- so we can have an idea of how long this will continue, make plans for the future---just know what is going on. But the thought of it makes me very anxious and scared too. All kinds of scenarios can play out in my imagination. So I try not to think about any specifics.

Theo is doing much better with his gagging and throwing up since we started him on the prevacid. We are crushing up the little balls that clog up the tube and dissolving it all in water before giving it to him. There is another form of the medicine --a solutab--which we got after we had so much trouble with the other stuff, which was the wrong kind for the pharmacy to have given us in the first place. The solutab is made to dissolve quickly on the tongue and says on the package specifically that it can be used with ng tubes of the size Theo has. The little balls in the solutab are much smaller than the others, but still cake up together and clog the end of the tube--we tried it once and it got clogged but luckily we were able to pull back on the syringe and unclog it. So we took an empty tube and practiced with it over the sink and saw how the little balls clump up together at the end of the tube. Even though they are individually small enough to fit through the opening, once they get clumped up, they stop the flow through the tube. We let the pharmacy know, but I think we will write the drug company. I wouldn't want anyone else to have the same problem of having to remove the tube and reinsert it over and over becuase the medication clogs the tube. So, since then we have been crushing the medicine, which I think probably reduces it's effectiveness-- the instructions are pretty clear about getting the balls in the stomach intact--I think it still has had some positive effect and I really think it has helped him. He seems more content and has not been gagging or throwing up. He has coughed some, but I think that's mostly due to excess saliva in the back of his throat. There has definitely been an improvement and that's been a relief.

Over this past weekend, my good friend Pam came from Indianapolis to visit and she stayed up with Theo over nights so we could get some sleep. It was so nice to be able to go to sleep together in the same bed and sleep all night long! We had a really nice visit. I still feel so tired though. We both feel like we could sleep for a week straight. We're back to our regular schedule now of staying up with him every other night. Lately, Theo has not been sleeping much at night. He has been calm, but awake. And if he is not asleep, we can't sleep. I don't know what it is, he just isn't sleepy at night. He continues to be more fussy at night, but for the past couple nights he has been more calm, but not sleepy. Maybe his brain just works that way now. I don't know. I think he isn't as fussy because the acid reflux is better, but I don't know why he hasn't been sleepy.

My mom is coming tomorrow and bringing a turkey and broccoli casserole. I'm making stuffing and sweet potato casserole with pecan topping. We are just having a very low key dinner. Not a big deal. I feel ok about Thanksgiving, it doesn't bother me to think of having a Thankgiving dinner, but the thought of Christmas coming makes me feel anxious and sad. We have decided not to celebrate this year. Some people have asked me if I will regret not celebrating since it is his first Christmas, but the thought of it being not just his first, but his only Christmas makes it feel really awful for me. He doesn't know it's Christmas anyway. If he was aware of it, things might be different, but he has no awareness of something like that, he wouldn't even be able to see the lights on a tree. So, as long as he is content and peaceful, I will be ok.

I wish everyone a good Thanksgivng tomorrow. Even with the pain and sorrow we feel daily, I am thankful that we have each other and people who love us. We have a warm home, good food to eat and we are both healthy. I am thankful that I have some time with my precious baby and I that I am his mother.

Blessings to all of you--
Love,
Karla

11/18/2005

2005-11-18T21:36:00.000-05:00

We had our surgery consult on Wednesday the 16th. Theo was great the whole time--from the minute we put him in the car seat and went to the hospital until we got home, he was very calm and content. He even went to sleep in the examining room. We met Dr. Hanes who seemed very nice. He says the the gagging and choking is due to acid reflux which is common for babies in general, but highly common in babies with problems like Theo's--it's most likely a nuerological issue. He also told us that having a g-tube placed in Theo's belly may not fix that, and could possibly make it worse. He also feels that the procedure is not a simple one and carries many risks which bear serious consideration. I was glad to hear that my worries about the seriousness of this surgery were not unfounded--I have heard so many people tell me how "simple" the procedure is. Dr. Hanes also believes the best course of action is to wait until the results of the November 30th MRI to see what is happening in our special baby's little head. If the tumor is growing quickly and the prognosis is a few months, he doesn't feel the surgery is worth the risk. General anesthesia carries many risks and the surgery itself, Dr. Hanes said, is very painful afterward and can take a while to heal. There are also the risks of infection, and all the other risks surgical procedures carry. He said that if the tumor is very slow growing then he will go ahead with the placement of the g-tube in the belly. If by some remote chance there is no evidence of tumor, he will place the g-tube and do another surgery called the nissen fundoplication (sometimes called "the wrap" or "fundo") where the upper part of the stomach is wrapped around the lower part of the esophagus. This would add to the risk considerably but treat the reflux. And I hope that this will not be the option. The only way that he would do that procedure is if there is no tumor. I have said before that my biggest fear right now is that the tumor will not come back and Theo will be left to live his life this way. Dr. Hanes referred to his brain damage as the "neurological devastation", which it is. Nobody had said that before. Everyone else (medical people) either avoids prolonged talking about the brain damage or will say, "the injury" or "the insult". So anyway, he scheduled him for the surgery for December 9, just in case, but whether he actually has the surgery is subject to the results of the MRI.

In the meantime, I still don't know what can be done to help Theo with his breathing issues--and neither does anyone else--I asked that specific question twice and never got an answer. I know his breathing issues are completely caused by the irritation of the tube in his nasal passages and in his throat. This morning I had to remove the tube because it got clogged with these little time-released pellets of prevacid which we were prescribed to help relieve the reflux (we later got the right kind straight with the pharmacy). When I took the tube out, we realized that was our last tube so Jamie had to go to the place that supplies all Theo's feeding stuff to get more tubes--they couldn't deliver till later in the day and he needed food and medicine right away. So the tube was out for about an hour and he had no breathing problem whatsoever during that time. Once he calmed down from being upset about me pulling the thing out of his nose, he slept more peacefully and soundlessly than he has in three months. He was so upset when we had to put it back in and his little nose bled and he was sneezing blood-not a lot, but it upset me so much that I couldn't do it and we had to call our nurse and she came over to do it. She said the bleeding was very minimal and caused by the irritation of his nasal passages. That's the reason that he wasn't going to be able to keep the ng tube if he had stayed on chemo. The risk of infection is high because the nasal passages always get irritated from those things and chemo lowers the white blood cell count so much. So, I don't know what we can do to help him. I just wish he could eat and swallow like normal--but that's pointless to wish for. It just breaks my heart to see him suffer for one second.

So--once again, everything depends on what the MRI will show on the 30th. 12 more days until we know what is happening in Theo's head. We won't know the results until we meet with the doctors on the next day December 1.

Keep us in your prayers--
Love --
Karla

11/11/05

2005-11-11T12:53:00.000-05:00

Hi everyone--
Again, sorry it's been so long since the last post, things just get so hectic, and not a lot really changes with Theo. He has been breathing a little easier, although he is still having those problems. The only time he doesn't have the breathing issue is when he is sleeping. That's how I know he has awakened--when I hear the wheezing, I know he is awake. Even when he is awake and calm, he has noisy breathing. It definitely gets worse when he is agitated, but he does do it a little bit all the time. When I took his tube out to change it last weekend, the brething problems abated for the time I had the tube out. So I am pretty sure the tube is making this worse if not directly causing it. I think the tube might be causing him to constrict his throat muscles or something. When he is asleep he is completely relaxed and so the airway is totally clear. He also continues to gag occasionally with his feeding or when we give his medicines. He hadn't done it for several days but then gagged several times on Thursday and spit up twice.

After thinking about all this and really weighing all sides and talking with our home nurse and our nurse practioner at MCV, I called and set up a surgical consult with pediatric surgery to schedule the gi tube placement in his stomach. Our consult is for next Wednesday the 16th at 1:40 p.m. Dr. Hanes with MCV pediatric surgery will be seeing us and doing the surgery. Our home nurse Donna recommends him very highly. I haven't met him yet, another surgeon did the Hickman surgery when we were in the hospital.

I'm not looking forward to Theo's having to go through another surgery, but I want him to be as comfortable as possible and in the long run, I think it will help him breathe better and to have his feedings without gagging or throwing up. I think the tube in his nose, which goes down his throat is just irritating him. I don't really understand the throwing up and gagging, because he only does it occasionally and the majority of the time, only when we give certain medicines--the docusate and the phenobarbitol--but once he does it once, he gets agitated and then tends to have problems coughing and gaggin for several hours with feeding. We have had to slow his feeds way down or try to wait until he is asleep to feed him when this happens. I just hope the surgery for the placement of the gi tube in his belly goes well. People keep saying how simple a procedure it is--and I'm sure it is, but it's still surgery and he will have to be under anesthesia and have pain afterward and heal and there are certainly risks. I do feel though that it will better for him eventually. I'm pretty sure the surgery won't take place until after his MRI on the 30th. The nurses said that Dr. Hanes would work around that.

Other than that, not much else is happening. Theo weighs 18 lbs 2 oz now and looks healthy. Jamie and I are continuing to take turns staying downstairs with him and he sometimes has good nights, but often is very fussy and uncomfortable, crying and arching his back, tensing up his muscles. He has increased his agitation again in the evening and we have had to give him his morphine and ativan more frequently. We can't stand to see him upset and crying, especially when there is nothing we can do to help him or even know what is wrong. I think it's mostly jsut a weird cycle that he gets in. He tends to do very well in the mornigns with few problems, he hardly ever cries or gets upset in the morning, even when we change him or dress him or give him a bath. As the day goes on his crying and agitation increase. Night time is the worst. When we stay with Theo downstairs we get 2-3 hours of sleep, and that is scattered over the whole night, so we are basically sleeping every other night. We try to take naps during the day when we are home with him as well. We are just kind of used to being really tired all the time. Afternoons is when it really gets to me. I feel totally exhausted around 4:00 p.m. every day. There are a lot of ups and downs, mood swings, and of course the inevitable tears which seem to just spring up out nowhere. Sometimes I can talk about him and what has been going on or see a baby commercial or whatever and be fine and then other times, I'll just immediately feel the tears come to my eyes. There is also the love I feel for Theo that still makes me very happy and grateful to be his mother. But always, always there is this sadness and heaviness in my heart that never goes away. I know a lot of you have been really concerned about me and the crisis I am facing on a spiritual level. I appreciate your prayers and the messages some of you have sent me by email or comments or in cards. Knowing you care and knowing you are thinking of me, of all of us, is a great help. I don't think anything I have been feeling is unusual. I'm sure it's all normal--that doesn't make any of it any easier. I have felt less angry over the past couple weeks. But I am so acutely aware of the tragedy in our world. On great and small scales. I know that what we are going through is only one small drop in the huge ocean of pain and grief and sadness, need, sickness, hunger, injury, fear, death, lonlieness, abuse, and on and on. Knowing that our pain is only one miniscule addition to the whole does not lessen our terrible pain in the least, but it underscores, I think, the great magnitude of suffering that happens all over our world all the time. And I never really felt the impact of that suffering, of others' pain, of the human situation until now. I knew it was there and I even thought I was enlightened about all the suffering of others, quoting the Bhudda and such, feeling secure in my spiritual beliefs and I had no real idea of what true suffering could be, or what it really meant. I don't think I will ever understand why, not just in our case, but for all of it, and I am certainly nowhere near being through the pain, and there is lots more to come, but I do feel less anger. I don't know what that means either, I guess it's just another phase, more feelings to feel, to go through. I know that I will never be the same as I was before this happened, I am changed and I think that change is something that is ongoing.

Thanks everybody for the cards and well wishes that continue to come in. It really does help me to know that people are thinking of us and loving us and holding us in your hearts.

I'll keep you posted--
Love,
Karla

11/2/05

2005-11-02T17:44:00.000-05:00

Sorry it's been a while. Time just gets away from me sometimes. I don't have time to post while I am at work and when I am home with Theo, I don't want to leave him to spend time at the computer.

Not much is going on right now. We did get a futon over the weekend which is so nice. Jamie has a friend who is living in England and her boyfriend is here. They are in the process of getting rid of things so that he can move there with her and after reading the post where I mentioned it, she offered us their futon. We picked it up on Saturday and I got a new mattress and cover. This was great because I could afford to get a much nicer mattress than if we had purchased the whole thing new. Thanks so much to Gemma and Corey for giving us the futon. It has really made staying downstairs with Theo at night so much more comfortable.

Theo has continued to have some difficulty with his feedings and at times when we give his medications--although only with the phenobarbitol and the docusate. He gags and sometimes throws up during feeding or right after his meds are given. He also gags a lot when he is the least bit agitated so we have to slow his feedings down quite a bit and turn the feeder off when he either throws up or seems like he is feeling uncomfortable. So there have been days when he is beign fed for very long periods and times when he hasn't gotten all his food because he can't tolerate it. Or we wait for him to be asleep to feed him. It never happens when he is asleep because he is so relaxed.
He has gotten better with the strange breathing pattern, which I think I mentioned earlier, but still does it occasionally. Our nurse called the doctors last Thursday when she was here--we made a tape of it at it's worst and played it for her. It sounds like he is struggling for breath or like he is having an asthma attack, but there is nothing wrong wih his lungs. Like the gagging thing, it only happens when he is upset and never when he is sleeping. It seems like an airway obstruction that happens when he is agitated--or maybe he gets agitated because of the breathing problem. He has done it less this past week and has seemed a little more calm overall. The doctors said that if he starts doing it more frequently, including in his sleep, to bring him in, but until then, to continue to monitor.

Not much else to report, I have been up and down, as usual. Halloween was really hard. I didn't think it was a big deal, I got all the way through the day at work with all the kids I work with dressed up and having a Halloween party, and had no problem. On the way home though, driving down the street, I saw all the little kids in their costumes holding their parents hands and their treat bags, tromping up steps and dancing down sidewalks and just started to cry. I actually bought Theo a costume in August before this ever happened--a little black sweatsuit with a skeleton printed on the suit, but I left it in the closet. I didn't want to get him dressed up, I just couldn't bear it, plus he hates to have anything pulled over his head.
I heard on the radio the other day part of a reading of a work by C.S. Lewis, A Grief Observed, written after the death of his wife, and in it he says, "nobody told me grief felt so much like fear" and it does. The same sinking feeling in your stomach, the butterflies, the uneasy, queasy feeling in your gut, uncertainty. It is the very same physical feeling. Especially the feeling in your belly, that turning, anxious feeling. Except with fear, there is a something to be afraid of, a thing your fear is directed toward and you know you are afraid, and eventually the fear is resolved. That feeling in the pit of your stomach that comes with sudden fear generally goes away and you feel relief rush over you that the threat is gone. Grief is that same feeling, but it doesn't go away, there is nothing that can take it away or bring relief. When I heard the reading of that excerpt, I thought, "He is exactly right. It does feel like that".

Anyway--I will try not to go so long in between posts. I know so many of you are still praying for us and sending good thoughts and I continue to be grateful.
Love,
Karla

Medicaid Approved 10/25/05

2005-10-25T11:01:00.000-04:00

I have some good news to report--I received a letter this past weekend from Medicaid stating that Theo qualifies for full Medicaid coverage from 9/1/05 on. When I called, the caseworker told me that after Social Security approves him for disability, they will cover from the date of disability which is 08/20/05--the day we went to the ER and the tumor was discovered. In the meantime, they had me fill out another form for the state of VA disabilty determination which I sent in yesterday. So, with the SSI qualification pending, and of course, they never really know how long anything will take, the state form will also be in the works. Whichever one goes through first will determine his disability status and allow Medicaid to pay from 8/20 on. The paydate starts on 9/1 because he began receiving hospice care in September--even though he didn't start getting the hospice care until 9/19 when we were discharged, they start from the beginning of the month. I am confident that the disability qulification will go through as well--I don't see how it couldn't-- which means that all our hospital bills will be paid through Medicaid. I am so thankful for that. The money in his savings account will go to pay for his future expenses and any expenses we may have--rent, bills, etc. if I have to be out of work for an extended period depending on his condition later on. I can only take off work for 2 weeks at a time because I used all my Family Medical Leave time and my Paid Time Off (PTO) hours (they include vacation, sick, emergency, whatever) when I took off for maternity leave for three months after he was born. Remember, we rushed him to the ER the Saturday before I was supposed to start back my regular work schedule on August 22. Instead, Theo was having his brain surgery that day. I am accruing leave hours weekly now, but because I used up the allowed FMLA time during the first months of his life, I am restricted to the 2 week limit, unless I take time off (beyond that 2 weeks) without pay, but that can only be for up to 2 more weeks. Everybody at work has been really great with my schedule and being as flexible as possible, so I'm not saying any of this in any meanspirited way, that's just the policy. Under those rules, I could have about a month off without losing my current position and benefits, etc. We have no idea what his situation will be like further down the road. So, I am glad that we will have a little extra money in his account to fall back on if we need it. Right now we have about $5000 in his account. We are going to continue to save as much as we can, because I don't know how much we might need for later, and obviously I didn't have any life insurance for him. Just about a week before all this happened I got one of those things from Gerber in the mail---pay $1 and get a $10,000 life insurance policy for your child that grows with him over the years, blah , blah, you know, you've probably seen them. And I looked at it and read it and thought about doing it and then I thought, "Why would anybody need to get life insurance for a baby? They can get it when they grow up" and I threw it out. Now I know why people get life insurance for their children. It's an awful think to think about. A book our hospital social worker gave us mentioned an interesting thing; we have a word for what you call somebody when they lose a spouse--a widow or a widower--and a word for children who lose their parents--orphan--but there is no word for a parent who loses a child. It is such a horrible thing that we don't even have a word for it in the English language. And I know we haven't lost him yet, but I still have to think about these things. I can't avoid thinking about them.

Today he has had a good day, he is sleeping right now. He just finished his afternoon feeding. He hasn't been gagging as much but he does on occasion so we have continued to run his feeds fairly slowly. He did throw up once this past weekend. He still has times when he gets very irritated and cry inconsolably for long periods and we don't know why--and then there are times that he will calm down quickly when he is held and loved on. He is pretty much on his own schedule where he sleeps for 3 or 4 hours and then is awake for a few hours, sometimes he might be awake for 3 hours or sometimes longer. He generally sleeps in the evening from 6:00 until about 8:00 and then falls asleep again till around 10:00 or so. Then he'll fall sleep around 1:00 or 2:00 a.m. and almost always wakes up around 4:30 or 5:00 a.m. and stays awake till about 6:30 in the morning. It's pretty tiring for whichever one of us is staying downstairs with him (we take turns--whichever one of us is working the next day sleeps in the bed), but we are able to sleep a few hours at a time downstairs with him at differnt times throughout the night, getting up when he does and also at 3:00 a.m. to give his medicine. I have decided to get a futon to put downstairs, the loveseat is getting less tolerable the longer we do this. It seems to be the best thing for Theo right now though. We are both doing as well as we can. Again, we have days that are better than others, and we have days that are very sad and difficult. We can only go day by day though.

Please keep us in your thoughts and prayers.
I'll keep you posted--
Love--
Karla

10/21/05

2005-10-21T16:14:00.000-04:00

Theo is continuing to tolerate his new tube with no gagging or throwing up so that's some good news. Jamie has been staying downstairs with him the last few nights as I have been working and he has been off this week for fall break. I will stay downstairs with Theo tonight and Saturday to give Jamie some rest. I am thinking of getting a futon for downstairs so maybe we can both sleep downstairs with him or at the very least so that which ever one of us is sleeping down there can have a real bed to sleep in. We have two loveseats and no full length couch, so it's kind of hard to get any sleep. Not that we sleep all that much when we are down there with him, but whether he is upstairs or downstairs, we still have to get up at the end of his midnight feeding (now around 1:45 since we are slowing down his feeds) and at 4:00 a.m. to give his medicine then. The main reason for continuing to keep him downstairs is that we discovered that when we don't transition him upstairs to his crib, he cries much less at night and even when he does cry, he is much easier to calm than when he was sleeping upstairs in his bedroom. I don't know why. I guess it's just that he spends so much time downstairs that the environment is more familiar to him. But it is definitely warmer downstairs throughout the winter so we are thinking we will probably just let him stay downstairs indefinitely.

We both continue to have good days and bad days--or kind of ok days and bad days. I don't think we actually have good days at all. Some days are better than others. This doesn't get any easier. I have really been suffering a major spiritual crisis through all this. I know some people find that their relationship with God is strengthened through trials like these, but I feel completely abandoned and have actually for the first time in my life entertained the notion that perhaps there really is no god--not one that cares about what we're going through anyway. Or at the very least, can't intervene, otherwise why wouldn't he do so? The why questions beginning with us and with Theo, just expand to all the people who have been hurt, killed, left homeless and injured not only recently in New Orleans, and now the earthquakes, but all over the world. The suffering, the pain, lonlieness, illness, hunger, poverty, sadness, grief, of children and adults all over the world, all the time, just goes on and on and is everpresent. I see these things on the news (when I watch the news--I find I have very little desire to actually know what is going on outside our world of Theo most of the time) and I have a new sense of empathy and understanding of how parents feel who have lost their children, how people must feel when they have lost everything. I just can't understand it. Of course I knew that pain and suffering existed before this, but somehow I was able to find some kind of place for it, some explanation or maybe I just really ignored the reality of it all. Maybe it was just plain igonorance. I viewed pain and suffering as some kind of cosmic balancing, the way things somehow had to be until we as human beings found some way of being as a people consistently compassionate, caring, loving, more divine in our nature. I saw suffering and death as sad, difficult, painful, but necessary. A part of life to be accepted and even welcomed on some cosmic level as part of the divine cycle of life, death and re-birth. Now I know what it's like to feel that kind of helpless anguish, knowing there is absolutely nothing I can do and those feelings, this experience has called into question my most deeply held convictions, which I guess as it turns out, may not be all that deeply held. And while I still believe that the cycle of life-death-rebirth are part of a divine or a Universal mechanism of sorts, it feels personal to me now and I don't much like it. It hurts and I just want to continue to scream out how unfair it is. I feel much more fragile. I feel that all of us are much more fragile than I thought, more fragile, more special, more in need of caring and love, and sadly, I feel that God isn't offering much in the way of love and support. Unless it's through all of you, all of us. The divine nature of others comes more clear in these situations, but God himself or herself or whatever it is, feels absent. There is that part of me that knows that God is not responsible for human suffering, that God doesn't cause these things, and I want to hold on to my belief that God is love and wants to help us, but emotionally, I can't get past all the teachings of my childhood that told me "nothing is impossible wih God", that "by His stripes we are healed", etc, etc. And none of those things has been true in our situation. If those things are true, then why wasn't my baby healed? Why did this happen in the first place? Why do terrible things happen, especially to babies and children, ever? And why when people pray and pray, are those prayers not answered? We didn't believe hard enough? Didn't have enough faith? Those are the questions that go through my mind when I think on these things. And I have a hard time accepting that it's "God's plan" because what kind of plan is it then? Or that I just don't see the whole picture, that there is a reason for it all, we just can't know what it is. And I guess I do believe there is a reason, but I can't imagine a reason good enough. I can't believe anybody including God, could come to me and say, "Well, here's the reason Karla...." and I would go, "Oh, well yes, that is a good reason". I know it's because I'm human and all the reasons may be good and valid on some other higher plane where humanity and our wants and needs are not important or even relevant, but I'm not there right now, I'm here and being here right now just flat out sucks. It's just a circle of questions that can't be answered. All my why questions don't solve anything or provide any answers or even make me feel better. I know that it is just going to take a lot of time to heal and it is nowhere near being over.

I just ask that all of you continue to pray for us, because even feeling the way I do, spiritually bereft, I know that prayer and meditation, positive thoughts and energies do have a positive effect. We effect our world and others through our thoughts and actions.
So please do continue to think of us and send us your love and support. We need it. I need it.

Love,
Karla

10/17/05

2005-10-17T23:31:00.000-04:00

Since Thursday, Theo has been having problems with choking and spitting up. We think it might have something to do with his tube which was changed on that day. One of our home health nurses came over on Saturday and called the doctor who suggested we feed him very slowly. The nurse is coming by again today. She might just take the tube out and put a new one in again. Since we changed the tube he has had problems. One of us has had to sit up with him all night every night to make sure that he doesn't choke or throw up. We are just taking turns each night. Since I worked today, Jamie stayed up last night. We have had him on really slow feeds, like the doctor suggested and he is getting only 35 ml per hour, so it's nearly continuous all through the day, keeping food in his stomach just a tiny bit all the time so he won't throw it up. He is doing ok with that slow feed but every time we tried to speed it up a little so we can begin spacing the feedings out again, he began choking and gagging.

I had an appointment with the social security office today to apply for SSI (supplemental security income). I hope we will qualify because if he gets that, he automatically gets Medicaid. Plus any extra income will help us with the medical bills and any future expenses. But they told me today that they don't know whether we will qualify or not as it is a "needs based" program and we might have too much income. He couldn't tell what "too mcuh" is because each case is determined individually. We are in no way rich people. So the fact that we might make too much money is just ridiculous. Of course, they don't even ask what kind of monthly expenses we have or how much medical bills we have piled up, so I don't see how they can properly asses need when they don't know what our expenses are or what we owe. Anyway--if he does qualify, they will pay retro active benefits from the time of diagnosis, so that will be helpful, but we won't even know if he qualifies for up to 120 days. Though the guy said it could be sooner. You never know. It was really hard to go in there and sit there and talk about his case, hand over the medical records with the pages and pages of medication lists and tests that he recieved since his admittance date. Just being there in that situation, was one more heartbreaking thing. I haven't heard anything from the Medicaid office, though I did follow up with another phone call Friday. We got our first bill from the hospital this past week.

We continue to recieve periodic cards and checks from people with words of encouragement and financial gifts for Theo's account and we appreciate it so much. Jamie is looking into a charitable trust fund rather than the account we have now which is a custodial savings account. A charitable trust does the same things--takes care of medical expenses, needs, Theo related expenses, but I think donations can be tax deductible and there may be other benefits. We are trying to find out. Either way, all the money is going into his savings account right now.

I am going through a very hard time right now--it just seems some days are much worse, harder, than others. Please keep us in your thoughts and prayers.

Love to all,
Karla

10/12/05

2005-10-12T16:29:00.000-04:00

I just wanted to let everyone know that Theo had a very peaceful and calm day yesterday and fell asleep around 11:00 p.m. for bedtime (as opposed to many hours later) with very little crying. I don't know what the difference was, or whta made him more calm than he has been. Actually he is a little constipated (hasn't poo'd since day before yesterday) so you'd think he would be more fussy. He has had an ok day so far today, hopefully he will have another good night. Jamie's sister Meg is visiting tonight so she is staying home with Theo and we are going out to dinner. Which will be really nice, but it's hard too because anytime I am away from home, I only want to be back there with him. Even when I know I am not really missing anything and that he is doing fine.

I will post again soon to let you all know how things are going.

Love to all,
Karla

10/10/05

2005-10-10T11:12:00.000-04:00

I keep trying to think of new things to write without sounding too depressed and sad all the time and have a really hard time coming up with anything. We're doing ok I guess. As best we can. Theo continues to do ok. Not a lot of changes with him right now. He has continued to have a lot of problems settling down at night and we haven't been getting a lot of sleep. Some people have suggested keeping him awake during the day, but that's really hard to do since he can't really be engaged. Keeping him awake when he doesn't want to be would involve irritating him, making him angry or upset. He gets upset (and wakes up) when we do anything to disturb him such as change his diaper, bathe him, put clothes on him, pick him up (he calms quickly because he realizes he likes to be held), moving him, etc. And when we do those things--even when they are necessary--it's just really hard knowing that we are causing him any kind of pain at all--whether it's real physical pain or psychological or whatever, he clearly gets upset. We don't want to bother him when he is sleeping or calm no matter what time of day it is. We have had a couple days and nights where if he was awake, he was crying almost non-stop. Those times are really difficult. No parent wants to see their child cry and when it seems there is nothing you can do to help, it's even worse. It isn't always like that, there are times when he is awake and peaceful, I guess it's just that the difficult moments are more vivid and stay with me longer. During supervision for my counseling license, we talked about memories of trauma and how traumatic memories are stored in a different area of the brain than regular memories. When they are recalled, they come in flashes, like snapshots, one after the other, or like a roll of film played frame by frame. So when those moments are recalled, it's with more clarity and impact. Other memories are recalled like the film being played at regular speed. They play out and are stored away again with no problems. Traumatic memories have more clarity and immediate impact because of the way our brains store them. So maybe it's kind of like that. I know that when I think back over these last months, I have many memories that are like snapshots, that come back to me with that kind of stunning clarity. Flashes of the doctor coming in to tell me about the "blood on de brain", riding in the ambulance with Theo and the EMTs, looking down at Theo hooked up to a million wires, Theo getting stuck with needles, Theo intubated, Theo getting chemo, rushing down for emergency surgery to remove the tumor, looking at the CT scan that showed his cerbral cortex destroyed. Those things are always there in the back of my mind, popping up at random moments. They are mingled with thoughts of memories we'll never have, of him growing up, laughing, playing, running, and then there is the continuing heartbreak of the memories of Theo before the tumor. Of Theo smiling at us, Theo just beginning to imitate our sounds and facial expressions. All the new, sweet little changes that were happening more freqeuntly, day by day as he grew. Before the tumor. Even the very day everything happened. That morning, before he threw up the first time, he fed, he laid in bed with me, he smiled at me, laughing up at me, making his little "oh, oh, oh" sounds as I talked to him, Theo moving around, squirming on the bed, happy, joyful. Except we know that there was no "before the tumor" really, it was there from the beginning, growing. I look at pictures of him now, from his birth day on, knowing that it was there all the time, stupidly growing, dividing it's greedy cells inside his little brain. This stupid bunch of cells that have no purpose whatsoever except to divide and grow and divide and grow without ever stopping until they kill the very tissue that is giving them life. It makes me sick. Sick with grief and loss and angry that such a thing as cancer exists. But all that only brings me back to the "why " questions that cannot be answered. No reason for it at all. Not that we will ever know in this lifetime.

The next MRI is Nov. 30 and until then, we are just waiting, taking care of him as best we can, and just waiting to see what the pictures will show. Trying to make the best of the time we have with our precious baby.

I am still ever thankful and continue to be touched by the amount of love and support we receive from our friends and family. My mom visited this weekend and it was really nice to have her here. She is really good with Theo and he likes to hear her talk to him. Jamie's sister is coming to visit this week and we constantly have friends who come to visit us as well as my Dad and Jennifer who live really close by and come visit every week. People all over the country and the world continue to pray for us and send us positive energy. Which is welcome and good, because I have lost the ability or inclination to pray for anything. All I can do is offer up my love for Theo and all of my actions in caring for him as my prayers. That is all I can do and all that really matters. Any prayer that I might utter now would be only empty words with no meaning or feeling. But knowing that about my own heart doesn't mean that I don't know that the prayers and love and energies of other people on our behalf are meaningful and do touch us and help us in so many ways.
Because I can't do it is even more reason to ask for that gift from all of you.

Love to you all,
Karla

10/3/2005

2005-10-03T21:51:00.000-04:00

Sorry it’s been so long since my last post. Theo is doing about the same. He comes off the antibiotic pump today. It will be nice not to have to schlep that thing around or have to worry about forgetting to pick it up before I pick him up (I did that a couple times and then agonized for a second thinking I pulled the line out—that didn’t happen though).
He has been having some inconsolable crying spells lately—crying for a couple or three hours without our being about able to calm him down. This usually happens just before bedtime, but also happens during the day sometimes too. We can’t figure out what exactly might be causing these. He may just be uncomfortable or irritable, it may just be his brain. Dr. Ward (our neurosurgeon) would probably say “that’s just his functioning level, these kids do that”. Meaning kids with brain damage at the level Theo has. Jamie thinks maybe he is “remembering” all the trauma he has gone through. It is possible I guess. All cells in our bodies have a certain kind of memory. In some way, maybe he is remembering, I hope not. Just like I hope he doesn't have bad dreams. I can tell when he is dreaming. During these times when he cries for long periods, he doesn’t seem to be hurting physically, but it seems like a mad, sad or just unhappy cry. We usually give him his ativan during these times, but it doesn’t always work. Sometimes he will calm down and almost stop, but then tense up and start crying again. I can barely stand it when he cries like that without stopping. No matter what we do to try to help him, he doesn’t calm down, usually he wil fall asleep eventually. It makes me cry too once it goes on for a while. Other than these times, he is doing ok. We are still just going day by day.
Yesterday (Sunday) was a really hard day for me. I don’t know why. I went to a friend’s baby shower on Saturday, and it didn’t make me feel too bad. I expected it might be more diffictl than it was, but it went ok. Maybe I just didn’t feel it until Sunday. Pregnant women don't really bother me. I usually have a really hard time seeing little boys or babies around Theo’s age, or little blond boys, toddler age. That’s really hard for me. It’s like a knife in my heart, seeing those little boys who always make me think of Theo and all the things he will necer experience. All the things I will never see him do. How he will never put his little arms around my neck, I’ll never see him smile at me again, never hear him say Mama or Daddy or anything else. He’ll never play with me or with other children. I can just go on and on thinking about all the things he won’t do or see and the things we will miss. But I try not to. I try not to think about those things. But sometimes I can’t help it. I just can’t understand it. I can’t understand why things like this have to happen to anyone. But then when I get caught up in that train of thought, it doesn’t help either. I can ask why and search for an answer the rest of my life and I won’t find one.

I have applied for Medicaid (and have already been told that our income is too high to get full Medicaid coverage). We may be eligible for what they call a "spend-down" which is where Medicaid helps to defray some of the costs that insurance won't pay. Our insurance will probably pay around 70 to 80%, but that still leaves quite a bit eft over. I have also applied for SSI(supplemental security income)from social security for Theo. This is monthly money available for children and adults with disabilities. We have an appointment at the social security office on October 17th. If he gets the social security, he will automatically get Medicaid. His hospital bills total around $280,000. The Medicaid guy told me today that social security may be able to pay some retro-active money. It's strange, but I'm not too worried about the bills. I feel somehow, they will be taken care of. I hope the medicaid and SSI will provide some help. I'll keep you updated on the status.

We are so very apreciative of the gifts we have recieved (emotional, spiritual, physical, monetary, edible, etc) and those we continue to recieve. We continue to be thankful for the love and support of our friends.

As always, I'll keep you updated with news of Theo and how we are doing.
--Love,
Karla

9/28/04

2005-09-28T21:43:00.000-04:00

We went to see Dr. Ward today to have the sutures removed from Theo's shunt surgery. He didn't like that part too much but he did love the car ride and being in the stroller. He loves to go for rides. He is doing pretty well today. We are just taking things one day at a time. There isn't a whole lot to report. We are going in for another MRI on November 30th, a Wednesday. On Thursday, December 1st, we will meet with all the doctors to review the MRI and see what is going on with Theo's very special little head. We are concentrating now on keeping him as comfortable as possible, as content as possible. It's going pretty well, he is much more comfortable here than in the hospital. He sleeps on and off throughout the day but is awake and alert for several hours at a time. He usually sleeps most of the night. His last feeding is at midnight and ends at 1:00 a.m. so I usually stay awake until then and give him his morphine dose at 1:00 when his food is finished. Jamie usually gets up at 4:00 a.m. to give him his next dose. Sometimes Theo wakes up around that time and needs a diaper change, when this happens, it can take a while to get him back to sleep--he doesn't much like his diaper changed or to be disturbed. But he will usually fall back to sleep and sleep till about 8:00 a.m. Then he is fed again and given several of his medications. He naps on and off throughout the day. When he is sleeping he looks so peaceful.

We have decided not to publish Theo's custodial account number but to give our mailing address. If anyone wishes to send anything to contribute to his account, please send it directly to our home. Any checks should be made out to him. His full name is Thelonius Luther Helbert Fueglein, you can use the whole thing or just Thelonius Fueglein. If you send any checks addressed to either of us, we will still make sure it gets to his account, but it would save a step to send things addressed directly to him.
Our mailing address is:
527 North Sheppard Street
Richmond, VA 23221

We continue to be amazed at and grateful for the generosity of our friends and family. So many people have dropped off food and gift certificates for groceries and a couple of massages, our whole street got together and got us meals for a week from a local chef. I almost cried. We are so loved and supported and it means so much.

I am trying to continue to post regularly, about every other day. Things are a bit more hectic now, but they are settling down some.

Please continue to offer up prayers for Theo and for us.

All our love--
Karla

9/24/05

2005-09-24T14:33:00.000-04:00

Things are going ok with us at home.
We are both still getting used to having him here and are both dealing with all sorts of emotional ups and downs. It'll be that way for a while I imagine. Today is an ok day--not a good day--but an ok day for me. Theo is about the same all the time, now that we are getting his medications straight. He is on a good dose of morphine so that he is comfortable but not knocked out, we are learning how he is most comfortable, how he likes to be held, positioned, etc. He has times where he seems to feels pain or when he is agitated, for which he gets ativan as he needs it, but we are learning how to best calm him down and help him be soothed. He is mostly peaceful and content. We can tell he knows he is in a safe place, he senses who we are, he responds to our voices and touch, he knows he is loved. He loves to be held and cuddled, he likes to dance to music that he likes (especially Thelonious Monk, Miles Davis, Duke Ellington, a new cd of children's songs given to us by a friend of Jamie's), he responds to our love and care. All of these are good things. Jamie and I are getting used to the new Theo and the whole idea of how things are and how things will be as well as still dealing with the trauma of the last several weeks and the fear of the known and of the unknown. It'll take a while. In dealing with right now though, we luckily have strengths in very complimentary areas. He is better at knowing how to load and run all the pumps and machines, change the medication cassettes for the iv, measure out doses and keep the med schedule straight, note everything down, while all that makes me a little crazy, nervous and frustrated. And I am a little better at being comfortable holding, changing, bathing, comforting our new Theo, being ok while I am with him. Both of us are getting better at everything and are helping and supporting each other where we need help. I am so grateful to have him. He is a wonderful Daddy and my best friend. Most of the time you hear only about me through these posts; my thoughts and feelings. I don't say enough how wonderful Theo's father is. Theo is lucky to have such a loving, strong, reliable, giving, sweet man for his Daddy and so am I.

We are doing ok. I usually feel at a loss for what to tell people when they want to know what we need, because I don't really know what we need. I know a lot of people feel uncomfortable, don't know what to say to us, don't know what to do and want me to tell them what to do or what I need. Sometimes people seem to have problems knowing how to interact with us now. It's hard to find a balance between being empathetic and sympathetic and overbearing or maudlin or maybe it's the other extreme, feeling worried you might seem dismissive or uncaring if you don't talk enough about our plight. It's ok to not know what to say. Just know that we are grateful for all the support we have gotten and continue to get. Don't feel afraid to talk to us about it, but sometimes it's nice to talk about other things. You don't have to always ask how we are, because we don't really know if you really want to know or if the question is only being asked because it's socially appropriate. Ask how Theo is or just let us know you're thinking of us. Don't worry that we don't want to hear about your life or your worries, we do. Everything going on with the people we love is still important to us. Just please know that your love and support mean so much. And we thank you for it. This is a very pervasive thing for us, but the rest of the world doesn't stop because of our pain, even though it sometimes feels that it has. It's strange trying to live day to day and do normal things, have normal converstations. No matter what anyone says or does, or what I'm talking about or doing at any given moment, Theo is in my mind, my heart. My sadness right now pervades all my day to day activities, even when I smile or laugh, sadness is waiting. I know there is nothing that anyone can do to take it away. Sometimes I feel as though I will never be truly happy again. I feel different from everybody else, feel that I am irrevocably changed from who I was just a short time ago. I feel that surely everyone can tell, even the people at the bank or the grocery check out, that something is different about me. That I don't fit in with everyone else suddenly, that I am "other". Like grief and sadness are almost physical things that somehow everyone can see. I don't think that's really true, but it feels that way sometimes.

Jamie has opened the custodial account for Theo at Wachovia. If you want more information about it you can email me. We have had wonderful donations from the people we work with and from family members and friends and all that will go into Theo's account. Anthing sent to us will be put into Theo's account for his expenses and to help cover any expenses we may have if I or Jamie need to take any leave without pay.

We all send our love--
Karla, Jamie and Theo

No Place Like Home 9/22/2005

2005-09-23T10:57:00.000-04:00

We're home now with Theo. This week has been very difficult. Having him home is infinitely better than the hospital, but being home with him now has come with it's own kind of sadness and anxiety. Home health people and nurses have been in and out and it's been good to have help, but it's just so different than it used to be. It feels strange having people in and out, having this equipment around, having all these new things in place; medicine schedule, feeding schedule, the maintenance of the iv antibiotic pump, operating the feeding pump, medicine bottles crowding the kitchen counter; and seeing my baby lying there, barely moving, hooked to tubes in our own home, all of this constantly reminds me of how painfully different our lives are now. And the pain that comes from thinking of all the things that will never be feels sometimes too much to bear--no more holding him close to feed (although I am still pumping as much breastmilk as I can), no more smiles and playful times, no watching him grow up, sit up, roll over, crawl around, walk. No trips to see the ocean for the first time, no King's Dominion, no swingset, no explaining why the sky is blue or cleaning up thrown food or messes from playing. I don't want to dwell on the sadness or feel sorry for myself, but sometimes I find it very difficult to remain in the present and not be pulled to the past or to a future that will never exist. I do love being able to hold him and take care of him myself. It is so nice not being at the hospital anymore. But I recognize that we are already in the grieving process, grieving a life we won't have with Theo, greiving the happiness we had before the tumor made itself known.

Theo is doing well. He seems more comfortable since our home health nurse Sherri noticed yesterday that he seemed in more pain when we move him around and she recommended we call and have his morphine adjusted, so now he gets doses three hours apart and seems more comfortable. We had been saying this for a while. It's nice to have our observatios validated by someone else.

He looks beautiful when he sleeps. If he didn't have the ng tube, he would look just like his old self. Sleeping with arms thrown out to the sides looking peaceful and content. We are doing our best to cope and stay as positive as we can, enjoying as much as we can the time we have with him. It's very hard to go to work, to leave Theo and Jamie--and I know Jamie feels the same way when he has to leave us to go to campus to teach.

Sorry I am not more upbeat today. I feel just so incredibly sad.
Thank you all for your continued love, support and prayers. People have asked what we need--it's so hard right now to even recognize what we need, much less ask for it. I know it has been helpful when people have helped clean the house, dropped off dinners or particilarly things we can keep in the freezer and unthaw for quick meals, gift certificates for foods. We could both use a massage. Neither of us ever wants to leave or would do that on our own, but if we had gift certificates we would use them. Little things people have done for us, such as dropping things by like foods or bottles of wine. It is very hard to think of things that we need or want. Money has been very helpful. We are in the process of opening a custodial account for him through Wachovia (where we both have accounts) so we will have that money set aside for bills, expenses the insurance won't pay (they pay about 80%), or future expenses. We will put all the money already so generously donated by our co-workers and friends and family into that account. Any other money we get for Theo will go into the account as well.

We have so much to get used to and to keep track of right now in taking care of Theo's needs that it's hard to focus on our own. Thank you all for everything you've done to help us. Please continue to think of us and send us prayers and good wishes.
I will check in soon.
Love,
Karla

9/20/05 'Round Midnight 12:16 a.m.

2005-09-20T00:12:00.000-04:00

Theo is sleeping inhis own crib for the very first time. He has slept in the bassinet next to our bed until tonight. We got home around 3:00 p.m. Nobody was here to meet us. Jamie went to pick up all Theo's prescriptions and I stayed with him. I was very anxious, nervous and worried. I called all the companies involved and in about 30 minutes started getting phone calls from the people driving to the house. First the food supply company Praxair showed up with his feeding pump, bags, and formula. She showed us how to load the formula into the bags, thread the tubing, and run the machine. They sent the wrong formula and the wrong sized syringes to flush his tubing. They hadn't gotten the message that he needs formula concentrate and not ready to use. He has to have the concentrate because right now he is getting a mixture with less water to ensure higher calorie feedings with less volume (he was spitting up due to too much food in his belly). We got it all straight and luckily we had samples of the formula from the hospital and we can also use the powdered forumula we have already if we need to. It wasn't that hard to learn to set up and run the pump, it was just the unreality of the whole experience. It was really hard for me to concentrate on everything she was saying. After she showed up, the man from Bon Secours came with our antibiotic pump and all the accompanying supplies for that. He didn't stay long, but did have several paperwork pieces for me to sign as did the lady from Praxair. Then our very nice and helpful social worker, Dawn, from Noah's Children (not Noah's Ark as I said before) came and really did help me to feel a little better about the whole situation. The others left and we were trying to figure out his medicines. We gave his 5:00 p.m. meds and then our home health nurse Sherri showed up. She stayed for over two hours going over his medicines with us, teaching us about running the IV antibiotic pump and again filling out loads of paperwork. I thought I was going to scream before it was all over. It was so much information in such a short period of time and under such stressful conditions.

Today was really hard for me. I am really glad to have him home, but there is also a new kind of sadness as well. All I can think of are the times we had at home before all this happened. It's all so very different now. It's all so surreal. I feel so sad and heavy hearted. We are doing our best. I think it going to take us time to adjust to this new way of being a family. Tomorrow Jamie teaches his classes and I am staying home with Theo. The next day I go bnack to work and Jamie will stay with Theo. I hope we will all have good days together.

I'll keep you posted on how it's going. I will most likely not post every day, I'll shoot for every two days or so. Check in regularly and scroll down to be sure you don't miss any messages.

Please keep praying for us and keep us in your thoughts.

Love,
Karla

Last Day 9/18/05

2005-09-18T16:01:00.000-04:00

Today is our last day here--we are counting down the hours. So far the doctors are continuing to say that everything looks good for going home tomorrow. They say around noon, so that really means about 4:00 p.m. And things tend to change quickly around here. I'm just hoping that nothing will prevent our leaving tomorrow. We are very excited about having him home with us.

Theo is doing well (except he really needs to poo--he is a little constipated--he's getting stuff to help him go). He is asleep right now and looking very peaceful. He looks like he is dreaming, little eyes nmoving around, mouth moving. I wonder what he is dreaming of; I hope beautiful things. Maybe he is dreaming of being home.

We have been learning how to do everything we will need to do at home. I took out his ng tube yesterday and put a new one in. It wasn't as difficult as I thought it would be. The tube needs to be changed once a month. We have both practiced changing his dressing on his Hickman which gets done once a week. We have both also given him all his medicines through his tube yesterday and today. So with the home health support, we should be ok. They will meet us tomorrow when we get home to help us hook up his IV drip for the antibiotics, teach us how to use the pump for the antibiotics and the feeding pump. We haven't learned those things in the hospital because they aren't certain we will be using the same equipment they have here, so we are just waiting to learn on the ones we'll be using. We will have very good support from the Noah's Ark people, nurses, volunteers, social workers, etc. I think they are there as much or as little as we need. They will deliver all his medicines and supplies to us and make sure we have what we need for his care. They also have therapists, support groups and clergy people for mental health and spiritual support as well.

We are both really happy that Theo will be home with us. I know he will be more comfortable and so will we. After his course of antibiotics is done--in about a week or so, he won't be hooked up to anything except for when he is feeding so we will be able to walk around with him, hold him whenever we want, go for walks in the stroller, rides in the car, go out anywhere we want with him. It will feel so much better and more normal. We are also glad that people will be able to visit us at home instead of here. I am so thankful for all the wonderful support we have gotten and continue to get from all our friends and family.

I will continue to post about Theo's adventures and how we are all doing.

We love you all--
Karla

P.S ---Happy birthday Mommie! I love you.
It's my mom's birthday today :-)

9/16/05

2005-09-16T21:39:00.000-04:00

Some good news! Theo will be coming home Monday afternoon.
We are going to try to find time to clean up the house this weekend. I will clean out his pack-n- play this weekend sometime and finish getting his room together. He has been sleeping in his bassinet by our bed, but I think he has grown so much in the month we have been here that I don't even know if he will fit in it anymore! Plus, we will have his equipment for feeding and medications and he will need to be propped up some as he sleeps, so I think that he will need to start using his crib when we get home. I have been keeping lots of his clothes and and some other things in the bassinet part of the pack-n-play and using the contoured changing space for naps and such, but I think he is going to need all that space in the bassinet so I'll need to get all that straight. I also need to find a wedge pillow so he can sit up some as he rests. The home health people (from Bon Secours) will come to the house to teach us how to operate the feeding pump and medication stuff and will come by periodically--I think once a week--to check the equipment.
We will need to give him all his medications and feedings through his ng (nasal-gastro) tube. He won't have to get the g-tube in his stomach since he is not on chemo anymore. The main concern with that was that ng tubes, which run through the nose, down the throat and into the belly, can cause irritation of the nasal passages. With the suppressed immune system caused by the chemotherapy, a small irritation like that could easily lead to a sinus infection. But now that is not a concern. His ng tube will just need to be changed monthly. It's very easy to check for correct placement of the tube and use it for feedings and medicines.
He is on morphine every four hours and ativan prn (as needed) for agitation and irritability as well as any pain he might be experiencing. The doctors don't really agree on whether he should be or can be feeling pain, but to us (and many of the nurses) he appears to be in pain some of the time. Sometimes he just seems really irritated or mad, but neither of us (nor the nurses) can stand to see him upset like that, so we choose to give him the medications. We will give him all his medicine and feedings at home, and luckily, he will be getting most everything though the ng tube, some things through the Hickman. Once his antibiotics are done, he won't be on a constant drip iv so we can unhook all the tubes, hold him easily, take him for walks and rides, etc. It will feel so much more normal. As long as he is as comfortable and as happy as he can be, that is all that matters to me. We are really glad he is going to be coming home. I think he will feel much more relaxed and comfortable in his home environment. We will also be getting support from an organization called Noah's Ark Children's Health and Hospice Care for kids with chronic and terminal illnesses. Their nurses will come in at least once a week to help us with the medical aspecets and they will be providing services for psycho-social needs with social workers, support groups, volunteers, etc. We've been here almost a month. Monday, when we are scheduled to leave will be the 30th day. It's kind of appropriate that the Health and Hospice care is called Noah's Ark considering we've been through quite a storm for 30 days and 30 nights. I believe miracles can happen, but I also have to proceed in the way that we are. I can't put him through the trauma of chemo with things the way they are now. I feel incredible sadness, but also a sense of peace. We want Theo to be happy, peaceful, loved, at ease and comfortable. We want all the time we have with him to be joyful. We can't avoid feeling sadness, but we also feel so grateful to have been given the wonderful gift of Theo. So much of my strength and ability to handle this has come from my love for Theo and his for me. Much of it has also come from all of you, your prayers, positive energy, love and support gives us all strength. Thank you all so much for everything you have done and continue to do. We will continue to need your support after we get him home.

I also wanted to let you all know that so far, it doesn't appear that the infection is in the shunt but rather in the central line (the Hickman). The CSF fulid they drew has not grown a culture in 24 hours. They will check it again in another 24 hours, but they are thinking that it is probably not in the shunt. Antibiotics are continuing for 10 more days which will clear up the infection in the line.

I will continue, of course, to keep you updated and try to post more pictures of Theo for everyone to look at. Everyone who was thinking about visiting the hospital, we would love for you to wait till we get him home and visit us there. We are really tired of the hospital and will be very glad to be able to have people see us and Theo in our own home.

Love and kisses,
Karla

2005-09-14T21:51:00.000-04:00

Hi, I'm Theo

9/14/05

2005-09-14T20:57:00.000-04:00

We got the results of the MRI today and had a meeting with our neurosurgeon Dr. Ward, our oncologist Dr. Dunn and neurologist Dr. Shapiro. The MRI shows extensive damage to the cerebral cortex. Theo is severely brain damaged. The damage occurred from the original bleed of the tumor. Remember that the initial surgery to remove the tumor occurred as an emergency surgery after a very significant change in his pupils was noticed. That was the very first post/email. That bleed caused this damage which was not apparent until now. After that first surgery, they showed us on a follow up scan where there were some darker gray areas in the brain (healthy tissue shows up as very bright gray/white) and told us then that these gray areas might be stroke, blood, damage, or just swelling, it was too early to tell. I held out for swelling or for very minimal damage that would eventually correct itself, but not cause a lot of long term problem for him. I was wrong. They are unable to tell me exactly what type of functioning level he might be able to have. Mainly because he's so young and had not reached any real developmetnal milestones yet anyway. Also because the young brain is so changeable, it's hard to say what he may or may not do. He may never do anything more than he is doing right now--lying in bed doing baby stuff, pretty much at a 1 month or newborn level; except he is not sucking and probably will not ever be able to eat without a tube. He may eventually gain a small amount of function, maybe sitting up, maybe grasping--we don't know and neither do the doctors. It's very doubtful that he will walk or talk or have significant relationships. In light of all this, we have decided to discontinue the chemotherapy. We don't want to put him through that stress. In three months or so (this was the time period suggested by the doctors) we will take another look and see whether the tumor has come back and then do palliative care, keeping him as comfortable as possible.

Another issue that is more immediate is that he has developed an infection. They do periodic blood cultures on all people with these Hickman lines to check for infection. If the infection is in the central line (the Hickman), which is very common in people who have them, it is easily taken care of. He is already on antibiotics. If the infection is in the shunt, we will have to make more decisions about his care. The treatment for an infection in a shunt is another brain surgery to remove the shunt and then to place another one on the other side of the brain. Or we can choose to forgo the stress of the treatment. The infection would develop into a case of ventriculitis (infection of the ventricles) which would lead to death. We have decided that if the infection is in the shunt we will most likely not pursue the treatment. We want Theo to be in no pain and to be as comfortable as we can possibly help him to be.

I know this is very hard to read, very hard to wrap your mind around. I am so sorry to have to tell you all this news. I am heartbroken and feel more sadness than I thought would be possible in my lifetime. But I do feel more at peace than I felt yesterday or even earlier today. Jamie feels the same way. We need all your prayers for strength and peace. Theo needs your love and good thoughts.

I will continue to keep you posted about the infection and on anything new that happens.

We love you all--
Karla, Jamie and Theo

9/13/05

2005-09-13T17:12:00.000-04:00

Sorry I didn't get to post yesterday. Theo has been experiencing some agitation and is taking Ativan to help with that. It seems to work well and he is resting comfortably right now. We are waiting for the results of an MRI we had done today to follow up a CT scan yesterday. The scan yesterday showed enlargement of the ventricles and the nurses pumped the shunt to relieve any extra pressure. As we get more information we will let you know. We have a meeting scheduled with neurology, oncology and the neuro suergeons tomorrow to discuss the whole case from each team's perspective, how he is doing over all, when he might go home, and what the plans for the future may be, etc.

Please continue to pray for Theo and for us, particularly for strength for us.

Love,
Karla

New Room 9/11/05

2005-09-11T14:56:00.000-04:00

Today is a much better day than yesterday. We are all very tired today, especially little Theo. He is sleeping now. He has been awake and calm today for a few hours, which is significant. Yesterday, if he was awake, he was crying and clearly in pain. He seems much better today. I don't have to wear gloves anymore to change his diaper. The really toxic period is over.

Today he gets a new drug --I can't remember the whole name but they call it G-factor--it helps grow new cells in the bone marrow which will help keep his blood count up and strengthen his immune system. We will have to give it at home as well. We will also give the mesna (the rescue drug/vitamin he got every three hours for 24 hours following chemo yesterday) so he won't have to spend so much time in clinic for his outpatient treatments. I am very happy that he is feeling better today. He is having a good day today.

We are now in 7-Central West. Still on the 7th floor, but no longer in Intensive Care. Most of the nurses in Central (and all our nurses) are certified in Chemotherapy, which even our nurses in the PICU are not. The oncologists want all the chemo kids in one place. We still have a private room. It's a little smaller, but nice. Even though we obviously don't get the same intensity of care, our nurses have been very good, and I am happy with the floor. As long as we don't have to go to the "East side" (which is my name for 7-East). We had a very bad experience over there where we spent one night before he had to have his shunt put in. I'm pretty sure nobody would have noticed that his ventric tube site was leaking if I hadn't said something. Anyway--we are focusing on the positive and I'm happy with our nurses and the care he is getting. Our room is 7-222 and for those of you who have the phone number, the new number is the same except the last two digits are now 46.

If you want the number and don't have it, email me and I'll send it to you. I expect that we will be in this room till he comes home, hopefully by Friday. No one has told me that, it's just the day I have in my head for some reason. We don't know exactly when he will be discharged.

Keep up the good thoughts and prayers--
I'll update you tomorrow.

Love to all--
Karla

Chemo Day 9/10/05

2005-09-10T22:45:00.000-04:00

This has been one of the hardest days for me so far. The first few days were a nightmare--the beginning of everything, "De beby has blood on de braien. We are sending to MCV to see pediatrric neurosurgeon"--then--"It's a tumor, ok..."--and after that the emergency surgery and the waiting through the surgery. All that was bad. And hard. And then everything in between, a little something almost every day-- a midnight ventriculostomy, swelling, fevers, high ICPs, needle sticks over and over, seizures, repeated EEGs, CTs, MRIs, leaky head, sewing it up, leaking, sewing it up, get a shunt, a Hickman, surgery, etc., etc.,--

But this day has been, is still, totally heartbreaking. To watch the poison medicine going through the tubes into my baby's small body, knowing that this is the only choice we have, that to be certain the cancer is killed, he must endure this, and to see it happen, to stand there and be able to do nothing but watch was just heartbreaking. Our chemo nurse said that this was a good day. That it was a day his healing starts. And I said, "Then why do I feel so sad?" She told me a lot of parents feel this way on the first chemotherapy day. She said it makes it seem real. Yes. It seemed very real. To a bystander, it was fairly anticlimactic, jsut more fluids from syringes pumped through the tube, but to us, it was something else entirely.

It seems like just some more medicine, crystal clear and in a syringe, looking like so many of the others, but it's not. This is the chemo. This is vincristine and cytoxan. Group A1. The nurse, specially trained just for this, wears double gloves. The bed is draped with protective covering all around, in case the medicines leak out somehow. The vincristine, made from the innocent looking periwinkle flower, is so toxic that if it reaches the skin it will burn and blister where it touches almost immediately. The cytoxan makes the lining of the bladder hemmorhage. He must have a "rescue medicine" called mesna every three hours for 24 hours to prevent this from happening. The mesna coats the lining of the bladder protecting it from the poisonous effects of the drugs that may be this very instant saving his life. He is given fluids all throughout the day to chase the drug out of the system as soon as it does its work. His diaper must be changed every two hours to ensure that cytoxan and vincristine laced urine does not damage his delicate skin. For the next 24 hours we must wear gloves while changing him. If his tears, saliva, or other body fluids touch our skin, we must wash our hands as soon as possible. His body fluids are toxic and if left on our skin will be absorbed into our bodies. These medicines given him today cause hair loss, jaw pain, stomach pain, nausea, and may cause vomiting.

He has been very uncomfortable all day. He was given Tylenol and Zofran, a powerful anti-nausea medicine that the oncologists and the chemo nurses have told me is a "miracle drug", before starting the chemo and has received both of those several times since. The chemo drugs themselves were started at 11:00 a.m. and were finished by noon. The rest of the day has been fluid delivery, mesna every three hours and zofran, Tylenol every four hours or so. He has received morphine a couple times and benedryl to help him sleep. He has whimpered and cried and made "help me" noises nearly every waking minute and has coughed a few times (possibly signaling nausea) but he has not thrown up. It has been wrenchingly painful to watch him in pain, to see him visibly uncomfortable, inconsolable and not know exactly what is hurting, how bad it's hurting, what I can do at all to help him. He can't tell me what hurts or how he feels or what he needs or what might make him feel a little better, if anything. He napped for about 3 hours this afternoon and roughly an hour or so this evening around 8:00. He is sleeping now, it's about 11:30 p.m. A little more than 12 hours since the chemo began. His little body is working so hard to fight cancer and to get the chemo out of his system at the same time. He finally fell asleep at about quarter till eleven and I came in here to post. After I finish, here I will go check on him and I pray he is still sleeping. When he is asleep he seems to be pain free and at peace. Tomorrow, I hope will be better than today. I hope he will feel a little better and then a little better still the next day and the next. Then we will start over on day 8 of the treatment with these same two drugs. And do it all again.

Please continue to pray for him and for us. My heart feels broken tonight. I know Jamie is devastated. How my heart can feel so broken and so full of love at the same time, I don't know. I read a quote once, I can't remember by who, that said something like, "The heart is made to be broken. Once it breaks it can expand to allow ever more beauty inside".

I have nothing left to say tonight, except please keep us in your hearts and minds and continue as my cousin Penni said, "to pray without ceasing".

Love,
Karla

Slow day 9/9/05

2005-09-09T13:39:00.000-04:00

Not much happening today. He is resting calmly. He will start chemo tomorrow and get a dose Saturday, Sunday and Monday I believe. Dr. Massey told me it would be over a three day period so I'm guessing he will get a small amount each day. They will observe him and give lots of fluids as well. After that he gets a dose of the A1 medicines once a week until week 5 then they will switch to A2. Then it's every other week till they switch to the B group which are the really toxic ones. He will spend 24 hours in the hospital for that one. I am getting ready to head over there right now. I expect a quiet evening.

The neurologist told Jamie that she saw no lesions on his spine, or anything out of the ordinary, from the MRI yesterday evening, but that the oncology department would be looking at it more closely and give us a more thorough reading. I continue to believe that he will have no spinal problems. They only did MRI of the spine, not the brain, so there will probably be another MRI over the next few days, maybe Monday, for the neuro-surgeons and oncologists to check out the brain and the tumor and shunt sites.

His vision is getting better daily. Even though I have been seeing daily improvement in small increments, the neurologists have just agreed with me that he is tracking (following objects with his eyes as they move from side to side or around the room) and focusing for brief periods. This is very positive. He is getting a little better every day. We are now cheering on his sucking and swallowing abilities as well. Keep praying for improvements in those areas.

Also continue to pray and think good thoughts as we start the chemo journey tomorrow.

Love,
Karla

9/08/05 Tests Today

2005-09-08T15:55:00.000-04:00

Theo is having an EEG right now--he is not happy about all the people putting things all over his head. The EEG will take about 40 minutes and is just to check on seizure activity (which I don't expect the will see), so they can start tapering off the phenobarbitol that he is still on. Later tonight he will have an MRI--around 6:00 p.m.-- of his head and spine to check to be sure that there are no lesions on the spine. Because this cancer grows in the ventricles where the cerebral spinal fluid (CSF) is made and flows around the brain and spine, sometimes cells migrate to the spinal area. But again, I expect good results from the test and to hear that his spine looks wonderful. Other than those two things, nothing else is happening until chemo starts. There is nothing scheduled for tomorrow. I talked to Dr. Massey (one of our oncologists) this morning and she said it would be fine to start the chemo on Saturday instead of Friday. I am working tomorrow and did not want to miss the beginning of chemotherapy. She said that they will bring the chemo to him and do the drip in his room on the PICU. The nurse practitioner with her said that it will be fairly anti-climactic, but I don't care. I don't want to miss the first doses of chemo. After we get on a regular schedule and it becomes more routine, I won't have to be there every time, Jamie can come on his own, but until then, I want to be there with him. It's sad and a little scary to know that after a few months, it will be routine and almost normal to take my baby to have chemo. Not, of course, if I sit and really focus on the thought, it will never really feel normal, but it's amazing what you get used to. We've been here so long now that a lot of this hospital stuff--knowing the equipment, the schedule, the jargon, the nurses, the different groups of doctors, their routines, the cafeteria schedule, the gift shop hours, the security gaurds, etc. --are all normal things to me now.

Anyway--please keep praying and meditating and sending positive energy and thoughts. It never gets so normal that I stop praying. I just told a friend of ours that there are people from every spiritual tradition--and all over the world-- praying, meditating, focusing on Theo's healing and for support and strength for us. It is really wonderful.

For all the people out there who like to know specific things to pray for, please pray that he will get through his chemo without getting sick, pray that he will not contract any illnesses or infections (chemo makes your white blood count very low and therefore your immune system low--a cold can easily turn into pneumonia), pray that there be no cancer cells in his body--in his brain, on his spine, anyplace at all, that there be no damage to him at all as a result of the tumor or surgery or chemotherapy, and please pray that he be able to suck and swallow so he can eat without a tube. He no longer has a breathing tube down his throat, but he had one for about 10 days and was intubated again for surgery yesterday, so I'm sure his throat is still sore. Not to mention that he just doesn't feel all that well in general. But they are not happy with his sucking and swallowing. The neurologist is going to send an occupational therapist (OT) along with the speech/language therapist to help. If it doesn't get better soon they will want to put a feeding tube into his belly. The feed tube now goes into his nose, down his throat and into his belly. It can't stay there forever because those tubes can cause irritation of the nasal passages and can lead to sinus infection and other problems. A tube in his stomach would mean another surgery and that I will not be able to feed him. I hope so much to avoid any further surgeries--plus, I want to be able to feed him again and for Jamie to be able to give him a bottle. So, please keep up the prayers and good thoughts--I know he will be ok.

Thank you all again, for all your continuing support and love.

I will check in tomorrow and let you know how he is doing.

Love to you all,
Karla

Surgery went well

2005-09-07T15:32:00.000-04:00

He is having another CT scan done now just to check and make sure everything is in place ok. Everything went well and he is doing fine. They said actually, that everything went "perfectly" and he did "great". He was intubated for the surgery and as soon as it was over, he began to wake up and breathe on his own.

He had to have the Hickman catheter placed instead of the portacath (the one that goes under the skin). The Hickman is a long, thin tube made of silicone that is inserted into one of the main blood vessels next to the heart. One end of the line remains outside the body and acts like a permanent IV. All the medications he is currently receiving can be given through the line. His chemotherapy drugs will go through the line, and blood can be drawn through the line. The really good thing is that there is always intravenous access--no more sticking ever again while this thing is in place. The drawbacks are that because the line is always outside the body, chances of infection are greater, it must always have a sterile dressing and be flushed or irrigated daily. It can't be submerged it in water, so baths will be a little trickier, but we will learn how to do it. Also, his swimming career will have to be put on hold for a while, but that's ok :-)

His veins are too little to support the portacath line. As young as he is and with all the trouble they've had with his veins anyway, I was expecting him to come back with the Hickman. It's ok, the important thing is that he is doing well.

So, now his Hickman is in place and his shunt is in place. They will probably start the chemotherapy this weekend (probably Saturday). The first doses are given over a three-day period. We're hoping he might be able to come home late next week sometime. Several of the chemo doses are in-patient but not all of them. We will learn more about it over time. I have the schedule for the treatment protocol.

There are four different medicines that he will recieve and they group them together in 3 groups A1, A2 (which are different doses of the same two medicines) and B which is two different medicines. The B group of medicine is the most toxic and are the ones which cause more of the worst side effects. During the first four weeks he will recieve A1 medicines once a week. The second 4 week period, he recieves A2 once a week for 2 weeks and then gets two weeks off. Next is the B group of medicines which he gets three times in one week, has an evaluation, probably CT scans and MRIs (blood tests are given throughout the treatment time to check his blood count and other things). Then he will start back the very next week with A1. Then the schedule of delivery changes again.

It's a lot of medicine and a lot of time spent with the pediatric oncologists and at the hospital. With the working schedules we both have now, one of us will be able to take him every time--sometimes they will be on the weekend and we can both be there. The schedule varies over the 70 week period, but as I said, he may not get it for all those weeks, it just depends on how things go.

I'm sorry if this is all a little confusing. I think I'm also using this format to try to understand the whole thing myself--on a lot of different levels. I will give you more information on the medicines themselves and the side effects if you want it. One thing that's interesting is that the most toxic of the medicines is Cisplatin which is basically liquid platinum. Funny how desirable platinum is outside the body. Don't swallow your platinum wedding bands. Just kidding--I don't think that would hurt you--but for sure don't melt them down into liquid form and inject them into your veins. Cisplatin's partner is called Cytoxin whose name just sounds evil. It's like a the name of a comic book villain who has one eye that shoots poison or something.

BUT--they will all work hard to kill any cancer cells that may be left behind or that try to sneak back. Which we will not allow. It's just that he will have to be sick and nauseated and have stomach pain and metal taste in his mouth and low blood cell counts, possible hearing loss (cisplatin), constipation, muscle weakness, etc. and he will not be able to tell me and will not understand why is goign through what he is going through. Or maybe he does understand on a level that I cannot. I don't know. He seems very content and looks very much at peace. And he looks wise--very wise, as if he knows something that we do not. Which I am sure he does. This is all something we all are just having to live through. Somehow we will do it--we are doing it. And after it is done, it will be done and he will continue to be healthy and strong and alive and happy and cancer free. I know it.

One more tidbit of information--did you know Clorox kills cancer cells? but there is no way to get it into people without it killing them too. Add that to your trivia knowledge base--it might come in handy someday.

I will give you more updates as they come along. We are all doing ok --as ok as we can. I'll let you know tomorrow how the baby boy is doing and what the doctors say about starting chemo.

Love to you all---
Karla
XOXOX

Reply from St. Jude Children's Hospital

2005-09-07T10:15:00.000-04:00

Our oncologist, Dr. Massey, who sent all Theo's information to St. Jude's, came in to see me yesterday afternoon and to report on what she heard from them. They told her that the would do the exact same thing MCV has planned in the treatment protocol for chemotherapy. The reason that the protocol lists 70 weeks is because the doses are so small--and Theo--is so small. He may not actually have to go 70 weeks, it just depends on the CT scans and MRIs over the next several months. I spoke to Drs. Dunn and MAssey about the case of a little boy whose story my mom found online who had the same kind of tumor as Theo's. His surgery did not go well and his family went to St. Jude's. They gave him chemo for 10 weeks to "harden" the tumor and their surgeons removed it. Then he got 10 more weeks of chemo and then conformal radiation, which does a better job of targeting the tumor tissue and not the surrounding brain. He is doing fine now. He was a year and a half old. The St. Jude doctors said they knew the case, because even they have had very few cases of choroid plexus carcinoma, and that the difference was due mainly because of age and because of the problems with that child's first surgery. His doses of chemo were much higher and they said they would never irradiate a child under 1 year of age, which is what MCV said also. They will remain as consulting doctors on the case, but we are staying here. It is possible that after Theo's first birthday (which will be one HUGE party!), he may get radiation if it is indicated. But he may very well not need it. Again, it all just depends on the pictures and evaluations as we go along. I am glad that we got the extra input and feel much better about the treatment plan now. Dr. Massey is really wonderful and has done a lot to help me feel more at ease. We will probably start his chemo on Friday or Saturday depending on how he is doing following his surgery which is going on right now. The first round will take three days.

They haven't done the occipital lobe test yet--the one where they hook leads up to the back of his head where the vision center of the brain is located adn then flash several lights to see if there is brain activity. Remember the opthamologists said every thing in the actual eyes are working normally. But I think he is seeing more every day, he focuses on me for a minute and then looks away like it's just too hard for him to sustain the eye contact. When I called the nurse this morning to see how his night went, she had to stick him once to draw blood for labs (thank goodness it was only once) and she said, "he looked at me and made a face, cried for a second and went right back to sleep". But she too can tell that he looked at her. So, I think he is just taking his time healing. I think he sees a little better every day.

I will let you know how he is doing this evening. I don't expect any problems. They tell me these procedures are routine. It should take 3 to 4 hours to get everything done.

Talk to you soon---
Love,
Karla

Change in plans 9/06/05

2005-09-06T15:35:00.000-04:00

Neurosurgery just called up to the nurses to tell us that his surgery will not happen today but tomorrow. Apparently, due to the holiday weekend, pre-scheduled surgeries and the number of traumas, the OR rooms are backed up. This morning, they changed him from evening to an earlier time--noonish--but then there were some problems with the surgery right before him so he was bumped back to the late afternoon. Now, because of the overabundance of surgeries/holiday backup/trauma going on, they can't get a room after 4:00 p.m. for neurosurgery. Since they want to do the portacath and the shunt at the same time, pediatric surgery (placing the portacath) and neurosurgery (placing the shunt)must coordinate times and operating rooms, so he will go tomorrow. This is really ok with me because it gives him another day to rest, get stronger and just take a break.

Otherwise, he is doing fine. I just left the room where he is sleeping peacefully with a full belly of breastmilk, a dose of tylenol and a dose of methadone--which he is now getting on a PRN (as needed) basis. He was a little shaky and his heart rate was somewhat higher than normal so, I suggested he get his PRN drugs and the doctors agreed. He looks so beautiful and content.

I feel very positively about him. I really do know that he will be ok. It's just getting through it all that is so hard. I am so grateful, and so is Jamie, for all the wonderful support and love we have been receiving from so, so many people. I want you all to know how strongly I really do feel and sense your support, love, and positive energies constantly flowing to us. I know at any given moment, someone is thinking of us, praying for us, sending us love, good thoughts, positive energies, wishing us well. I can't tell you how much it means to us. And all the people who have done so many things to help us out: coming over to walk Chloe, feeding her and the cats in the evenings when we are here at the hospital, sending off packages for me, picking up a book for Jamie, getting our mail, dropping off yummy gazpacho, bread and cheese, brownies, Ukrops gift cards, gift certificates for the coffee bar here n the hospital, $$ with notes to get a good dinner, etc., coming over to clean our house, droppign off dragonflies :-)--all these things and more our dear friends, family and neighbors have done for us. Not to mention all the beautiful, supportive, uplifting emails I get daily. Thank you all so much. I can't tell you enough how much all this has meant and continues to mean to us. I could never repay all the love and kindness extended to us. We love you all so much in return and feel so blessed, loved and supported.

I will, of course, keep you updated. I don't expect any further changes today. I'll let you know about his surgery tomorrow.

All our love--
Karla

Labor Day, 9/5/05

2005-09-05T21:30:00.000-04:00

The thought of Labor Day now makes me think of giving birth. I kind of feel like that's what we've been doing--going through a new birth. And I do know that just like the first time, it may feel really painful and like it might kill me any second, but suddenly it will be over and he will be here in my arms, healthy and beautiful and all the pain will seem magically gone. That's just what it will be like. This time it's more drawn out (although the first time sure did seem to take forever!).

Just to keep you updated, he is going in for his placement of either the portacath or the Hickman (for chemo delivery and iv) tomorrow around 5:00 or 6:00p.m.
The neurosurgeons will place the permanant shunt in at the same time. They should be done around 8:00p.m.. I will, of course, let you know how it goes, but we nor the surgeons expect any problems.

We have moved down the hall from 7-608 to 7-612 in the PICU. For people who have the phone number to 608--our old room on the PICU: the new number is the same but ends in 26 instead of 34. We are still in the PICU, just in a different room. While we were out at dinner last night, our nurse moved us to the new empty room so Theo could have a TV--the one in 608 was broken. I really didn't care though. It's amazing how little I have missed TV. Our TV at home has stayed on Animal Planet for Chloe to watch, and I don't even change it from there except to catch maybe three minutes of news in the mornings. Theo does seem to watch the moving images and colors though, so if he is happy, I am happy. Speakign of what he is seeing--the opthamologists haven't done the occipital test yet--I'll let you know when they do.

Everyone please keep us in your thoughts tomorrow evening for the surgery. I'm really hoping his veins can support the portacath so he won't have anything dangling outside his little body. We won't know till the surgeon gets in there and sees what she can see.

Stuff will be sent out to St. Jude's tomorrow by FedEx. Hopefully they will be in contact with Dr. Massey tomorrow as well.

Stay tuned...

Love to you all--
Karla

Septeber 4, 2004

2005-09-04T17:39:00.000-04:00

He's doing well today. The reinsertion of the ventricular tube went well, but his IV slipped out just as they were finishing and they tried to find another vein after that for a good two hours and could not. It was so hard knowing they were sticking and sticking him and he was crying and crying and hurting and not understanding what was happening to him. They never could find a vein and just left it alone. I knew that they wouldn't. They decided to just wait and if they need to draw labs to try the old fashioned way, but hopefully they won't have to do anything at all involving his blood till he goes in on Tuesday to have the portacath inserted (the line next to the heart for chemo delivery).
All his meds right now go in the NG (feeding) tube. He is still getting the steroids and phenobarbitol but they are weaning him off both. He is also still getting Methadone but now only twice a day. He gets tylenol pretty regularly, it seems to make him feel better--I think his throat is still sore and he for sure had a headache yesterday.
His head CT today looked good. I haven't heard any details, but no news about a CT scan is good news.
We aren't trying to breast or bottle feed right now to avoid any chance that he might aspirate. We don't need another thing happening.

The newest development today is that this whole reinsertion of the ventric tube reveals that he has hydroencehpaly (water on the brain--except it's not water but cerebral spinal fluid). Basically, it's a condition in which the CSF does not drain properly from the ventricles in the normal way. We make new fluid all the time and we drain it from our ventricles all the time, but now his will not drain. So, they are going to put a permanent shunt in his head. They will do it at the same time on Tuesday when they do the portacath. It really is permanent too. It stays there his whole life. It's a very small tube that will run from his ventricle down to his stomach from where he will just pass the extra fluid out of his body. The tube is long and coiled up in his belly so that it will uncoil as he grows and gets taller and bigger. They said that it will not impact his life in any way--he can run and jump and dance and ride bikes and swim and play and basically be and act like a regular kid. They said about half of all kids with brain tumors have these. There will be a small bump on his head and other than that, it will be totally invisible and unobtrusive.

It's just one thing after another it seems. They tell me these shunts are "not uncommon", it's "not uncommon" to have to dig and dig for a vein on a baby--and I know they're teling me the truth --thsee things are not uncommon in this sitiuation, but the whole thing is so uncommon. Totally uncommon.

He is resting peacefully and his color looks good. Earlier he was sleeping with his arms all sprawled out, like he did before any of this happened and, except for the tube in his nose and head, he looked almost like his old (3 month old) self. He is such a sweet little baby.

Dr. Massey, one of the oncologists told me she emailed St. Jude's and left all her information. She expects to hear from them early Tuesday and she will Fed Ex his info and pictures and scans and records to them on Tuesday as well. As soon as we hear anything we'll let you know. We may be going to Memphis (where St. Jude is located) pretty soon. We'll see.

I'll let you know if I hear anything else about the CT scan done today. Nothing else is scheduled to happen till Tuesday when the portacath and the shunt will be placed.

Keep praying and thinking good thoughts --
Love to you all,
Karla
XOXOX

Moved again 9/3/05

2005-09-03T22:32:00.000-04:00

10:30 p.m.

Well, anyone planning to visit us in the new room, change your plans. We've been moved back to the PICU. I'm very happy to be back with our favorite and very competent nurses, but not so happy with the reason we moved. The sutures where the ventric tube was removed has been leaking fluid since yesterday--they stitched it up tighter three times before it began leaking today for the fourth time. We were kind of wondering whether since the thing was leaking fluid that maybe the tube shouldn't have been left in--but we aren't brain surgeons. Anyway, they did a CT scan today, ordered several days ago to check on progress of healing, and found that the ventricles were enlarged indicating a superfluous amount of fluid. He needed to drain and couldn't. So they are putting the ventric tube back in. I wondered why they didn't leave the thing in anyway until his IPCs were consistently in single digits, but again, not a brain surgeon. They said, "clinically, he looked so good". The good news in the scan showed that the mid-line of the brain is now perfect and the right side (where the tumor was) has made good progresss toward it's normal shape--it still has a little ways to go but other than the excess fluid, his brain looks pretty good.

So anyway, we are back in our old room--7-608. Some one was slated to take it but then the new patient ended up not requiring intensive care. All those with the phone number, it's the same as it was.

They are in there now replacing the line. We have no reason to think it won't go well, but I will for sure update you tomorrow. The worst part was trying to get a vein for the IV and for labs. I hate to see him in pain. And it hurts for someone to be rooting around lookign for a vein. After several valiant tries, our great team of nurses and the brilliant vein-finding Dr. Melissa found a vein using an ultrasound machine and got the needle in that way. Poor little Theo's veins are so tiny and he's been stuck so many times since we've been here. I stayed in and rubbed his head and sang to him while they looked for veins. Hopefully they will be done with the procedure in a few minutes and he will have his methadone, some tylenol and some breastmilk (Theo's favorite cocktail) and sleep soundly throughout the night under the watch of the wonderful PICU nurses. I feel so much better knowing they are watching over him (along with his guardian angels :-)
Check in tomorrow---
Love,
Karla

9/3/05

2005-09-03T08:09:00.000-04:00

I'm writing from home before I go in to the hospital. Sorry there was no post yesterday, it was a hectic and long day.

Some very good changes to report: He made several attempts to suck and nurse yesterday at his feeding time! And he took a bottle of breastmilk for a short time. He had "failed" two suck tests when the speech pathologist came to see him on two separate occasions--both times when I wasn't there. Apparently, the test is some touching and feeling of his jaw and throat and mouth and then trying to get him to suck on a pacifier or a bottle nipple. They won't even give the barium swallow test until he passes the suck test. I told them 20 times "He won't take a pacifier--he will not suck one--he doesn't like them" and I told them, "He is really, really particular about the nipples on his bottles". He will only use the original nipples that came with the Enfamil ready-formula bottles they had in the hospital when he was born and some gerber ones that I bought that are a little bigger than the normal ones and which I can't find anymore, anyplace--so we have about 6 nipples that he will use. I brought some in after he "failed" the suck test the first time and they didn't use them again the second time either. I was at work both times they came in to the test. They don't ever make appointments for anything in there, we just have to hope we're there when things happen. Sometimes we know there is a two or three hour window in which things may (or may not) happen, like the doctors coming by or speech people or whomever.
The nurses are the most reliable people in the hospital.

Anyway--so yesterday they were talking about wanting to put in a GI tube--a feeding tube inserted directly into his stomach--based on these two "failed" tests. And we said no. I wanted to try myself. They told me I could but a nurse had to be present in case he aspirated (and to be sure I wasn't just saying that he was sucking when he wasn't). We waited till his next scheduled feed time so he would be hungry. I held him and put him to my breast. I had to put my nipple into his lips wchih just by itself seemed to give him a lot of comfort, but I kept talking to him and moving it around his mouth and he finally started to respond, suckign a little bit, moving his mouth around. It was like he was trying to remember how to nurse and he almost latched on but he definitely made the effort to suck several times. We put some breastmilk into a bottle with one of his nipples from home and he sucked more vigorously and swallowed about 5 ml of the milk. I think hi sthroat is still really sore from 9 days of intubation and it is hard to swallow. The nurse wrote everything in her notes. This was a great thing for him--and for me. IT was such a good feeling to see him sucking and feeding.
So, no way is he getting a tube put into his stomach.
We will try again each feeding time that I am there. He eats at 8:00 a.m., 12:00 noon, 4:00p.m., 8:00p.m., 12 midnight and then again at 4:00 a.m. I will try each day time and evening feeding.

In other news, he was moved from the PICU to the regular pediatric hall--same floor. Visitors, instead of going to the left when you get to the security table, take a right and go down the hall to the nurses station. You still have to check in with the guard. We are now in room 7-316. I don't have the phone number with me--so if you want to call the room, call the hospital and ask for the pediatric floor nurses station and then ask them for the room. I will miss our great nurses on the PICU and it will take some getting used to a new, smaller room--we have been in room 608 on the PICU for two weeks.

He is responding to us much more and knows when we're there. Jamie now has the magical ability to calm him when he cries, by somehow rubbing his forehead and temples--it works immediately and no one else can seem to do like his Daddy. He responds to other people too--my mother and my grandmother came in town yesterday and he knows the sound of my mom's voice, he calms down and stops to listen to her. He always stops crying and fussing when I hold him. You should see how peaceful and contented he looks when he is in my arms, he is just beautiful.

He still can't seem to see us, but I think he is trying to focus and doing so, more than he was. The opthamologists came in and tested his eyes and they say the eyes are fine, the pupils, cornea and "beautiful baby retina" are working as they are supposed to and responding to light and stimuli appropriately. There may be some problem with the occipital lobe that will correct itself eventually, due to the swelling and general trauma of the surgery. They are planning to do a test next week where they hook up EEG type leads to the occipital area of his head to see what the brain is doing when the stimulus comes in to the eyes. Some of the nurses seem to think he is seeing more light and shadow differential as well.

I talked to the St. Jude Children's Hospital people yesterday and they told me that I must have our doctor here call them and send all of Theo's information and x-rays, CTs, MRIs, etc. I told Dr. Dunn of the Heemonks yesterday that I wanted that done as soon as possible and she agreed. I will mention it again to whichever one of the oncologists we see next. I will make sure he gets whatever he needs. Most likely they will contact St. Jude on Tuesday, due to the holiday Monday. Either way though, he is scheduled to have the procedure to insert the catheter tubing into his artery (near the heart) on Tuesday to receive the chemo. No matter where he goes for treatment, he will have to have chemotherapy so it makes sense to go ahead and get the tubes put in. We hope he will get the under-the-skin port, which is way more convenient and easier to take care of and I think more comfortable emotionally for us and physically for him, but he may end up with the tubes that remain on the outside and which need to be flushed daily, dressings changed, etc. It just depends on what the surgeon sees when he or she gets in there. It all depends on his arteries and which kind of catheter his little body can best support.

Please continue prayers and meditations, chanting and dedications, singing, sending, focusing, loving, postive energies, to our boy and to us.

Thank you all for your continuous love and prayer and support.

I will let you know each thing that happens and I will keep you updated on the situation with St. Jude.

YAY! He's sucking!!

Love,
Karla
xoxoxo

9/01/05

2005-09-01T18:08:00.000-04:00

We met with the hematologist/oncologist Dr. Dunn who seemed less than encouraging. She underscored the great rarity of this type of tumor--Choroid plexus carcinoma--overall and the much greater rarity in infants. She spoke of a 70 week course of chemotheraopy and discussed the terrible side-effects including of course the ones we are all familiar with --nausea, vomiting, hair loss--but also talked about hearing loss and said that "many kids who have this chemo end up with hearing aids". She painted a pretty bleak picture. She also gave a much lower survival percentage than other information I looked up. I know each case is individual but I am planning on calling St. Jude tomorrow to discuss options with them and to look up all the information I can find. IF we do go on with treatment here, he will have surgery next week sometime to insert the port in an artery near his heart to deliver the chemo.

Other than that, he is doing fairly well, he still has the feeding tube, the speech person couldn't get up to look at him today so hopefully tomorrow. Both of us have been holding him, taking turns, nearly all day and it has been wonderful. He is so much more peaceful and content in our arms. I can tell for sure that he knows who is holding him and he recognizes my touch and my voice.

They have removed everything but the feed tube and will be moving him to the regular pediatric unit this evening or tomorrow mornign. So if you visit, we'll have a different phone number and room. I don't have any idea what room yet. The opthamologists visited today to check out his vision--I reported that I don't think he can see. And their tests showed that he is perceivign light and visual stimulus the way he should--the retina, cornea and pupil are all workign properly--but he is not tracking or responding to startle tests. They are ordering a EEG-like test that has leads hooked to the occipital area of the brain to test what brain activity occurs when there is stimulus in front of the eyes. It may be a temporary problem due to the trauma of the surgery. I think though, I have seen him focused on me a few times today.

I have a lot of mixed emotions today--I feel great that he is doing so much better right now, in the present moment. and not so great at all as a result of our conversation with the Heemonk. We'll see what further information I can come up with.

I will keep you all posted. Keep on praying and sending love---
Love,
Karla

News for 8/31/05

2005-08-31T20:30:00.000-04:00

Today has been a big day for Mr. Theo. He was extubated (breathing tube removed) at 9:00 a.m. this morning. Shortly after that they took out the central line in his femoral artery. Prior to that, they had inserted an IV and he promptly yanked it out right after they took out the central line. Instead of sticking him again, they just left it and are giving him his steroids and methadone through the feeding tube. They took the feeding tube out but he wouldn't take a bottle--I think that I could have gotten him to do it--or if they would have let me try, I bet he would have breastfed. Anyway, they will have the SLP (speech pathologist) look at him again tomorrow and try to do a swallowing test. This afternoon they took out the ventric tube. So the only thing he's hooked up to right now is the feeding tube. And the heart rate and respiration monitors--but those are just the regular leads that are stuck to his chest--non-invasive stuff. Tomorrow they will probably try to get another IV in. Jamie talked with the oncologist Dr. Dunn today and she said taht the cancer was in fact the chortoid plexus carcinoma. They are waiting for one more stain to be returned and will talk to us further about treatment plans and such tomorrow. She did say that they would most likely put a port type thing in an artery near his heart to deliver the chemo since his little baby veins are not very cooperative as it is and could not stand sustained medication delivery (especially that nasty chemo--but it has to be done). That's all we know right now except that this kind of brain tumor is one of the most rare that exists. I will update you after we both meet with Dr. Dunn and the Heemonk team tomorrow.

Keep up the prayers and love and meditations and chants and whatever you are sending our way. I always feel I must reiterate how very much we appreciate and need those. We heard today from Jamie's Aunt Ruth that Theo is being prayed for all the way over in France and that a prayer network was begun at Lourdes and is probably all over Europe by now. So now it's gone overseas ~~

Love and Kisses--
Karla

The Latest News~~8/30/05 11:00 p.m.

2005-08-30T22:10:00.000-04:00

Lots of news tonight~~

He has been taken off the fentanyl—which is like morphine—and put on methadone to counteract any withdrawal symptoms. He will be on the methadone for 4 days. He has been on the fentanyl for 9 days for pain.

They are planning on taking out the breathing tube tomorrow morning around 8:00 a.m. This is very good news. He is continuing to breathe on his own since Sunday evening and because he has been breathing “room air” they don’t anticipate his needing oxygen after extubation. After the breathing tube comes out, I will be able to hold him again which is some of the best news of all! The only thing better than that is that they may take his feeding tube out tomorrow as well. If not tomorrow then Thursday. They want to get a Speech/language pathologist to come observe him and to do a barium swallow test to make sure that he will not aspirate when he swallows. After that I will be able to breastfeed him again and Jamie can bottle feed him. That will be a wonderful day! I can't wait to hold him in my arms and feed him again. We have lots of breastmilk stored up in the freezer at the hospital too for bottle feeding. He was getting breastmilk through his feeding tube for a little while but then his sodium levels dropped very low. There is not very much sodium in breastmilk, but a lot in formula, so he has been getting formula exclusively for a while. Most likely, his sodium dropped because he was draining so much cerebral spinal fluid, which contains a lot of salt.

Speaking of that, they may take out the ventric tube tomorrow or Thursday. This is neurosurgery’s decision and I didn’t see Dr. Ward today, but the PICU doctor thinks the removal of that tube should be fairly soon as well. He is draining much less fluid and has not been "popped off"--unclamping the ventric to drain--for over 24 hours and the last time it drained, it was 7 ml less fluid than the previous time. This shows that he is not producing excessive amounts of fluid and that it is becoming more stable.

Other good signs are that he is coughing on his own to clear his lungs and crying. He cried tears for the first time tonight while he was coughing and the nurses were suctioning his breathing tube. He also cried when they were trying (in vain) to find a vein to do labs. They were thinking of taking out the central line in his femoral artery tonight but only if they could find a good vein to draw labs and to give his steroids (to reduce swelling). The central line has not been allowing them to draw back blood (probably because his artery is so small and maybe because it is clotting), and is causing his leg to be swollen, but they decided to leave it in because they couldn’t find an alternative. They think they will probably take it out tomorrow as well. It made me sad to see him cry, making no sound because the breathing tube runs between his vocal chords, tears just squeezing silently from his little eyes, but it showed that he’s much less sedated and that he is sensing and feeling more. His gag reflex is working well also, which is something the neurologists were looking for.

The PICU attending physician told me tonight that she had talked with the pathology people and they are 98% certain that the tumor was a choroid plexus carcinoma. They are still waiting for 2 stains to come back. The slides are sent out to very specialized labs and there is a lot of transit time. This is why it has taken so long. We will probably meet with the people from Hematology/Oncology tomorrow--they call them "Heem-Onc". The Heem-Oncs don't want to discuss a treatment plan until they are 100% certain what is was, but the 98% is a pretty good bet that it was the choroid plexus carcinoma. The choroid plexus is the structure in the brain that makes cerebral spinal fluid. The following information is from St. Jude Hospital's website (because I know ya'll would be looking up information--but don't look too hard because there is a chance it is something else--but most likely, this was it) :
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The choroid plexus carcinoma is sometimes called an anaplastic choroid plexus papilloma. In very young children, the lateral ventricles are the most common location of this tumor. Ventricles are cavities in the brain that are filled with cerebrospinal fluid, including the two lateral, third, and fourth ventricles.

The choroid plexus carcinoma grows within the ventricles. It eventually blocks the flow of cerebrospinal fluid, causing hydrocephalus (an abnormal increase of cerebrospinal fluid in the intracranial cavity). Headache and other symptoms of increased pressure are common.
<***this was the vomiting I saw and the abnormal motor movements***>

The choroid plexus carcinomas commonly grow into nearby tissue and spread widely via the cerebrospinal fluid.
<***this didn't happen because we caught it so early***>

Incidence

About 3 percent of the primary brain tumors in children are choroid plexus papillomas.
<***The benign form***>
They represent less than 1 percent of all primary brain tumors. Choroid plexus carcinomas comprise about 10 percent of all choroid plexus tumors.

Treatment Strategies

For choroid plexus carcinomas, treatment often includes surgery, chemotherapy, and radiation therapy.
<***He won't have radiation because he is so young***>
A second surgery might be recommended for recurrent tumors, followed by some form of radiation and/or chemotherapy.

Current Research

Stem cell transplantation as a part of treatment continues to be under study.

Scientists continue to study chromosomal abnormalities, genes, and proteins that may have a role in the development and metastasis (spread to other parts of the central nervous system) of pediatric brain tumors.

Clinical trials are underway to help develop chemotherapy drugs effective against these tumors.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I will let you know what the Hee-Moncs say, whether it is something different and what the inital treatment strategies are as soon as we know.

Keep praying and sending positive energy and thinking and speaking good thoughts. As my mom said today, "We won't speak or even think negatively concerning Theo".

Keep sending us your love--he is getting much better :-)
We love you all--
Karla
XOXOX

8/30/05

2005-08-30T15:56:00.000-04:00

Not a lot of news to share today--which is pretty good news. He continues to do very well, breathing on his own, swelling going down, etc. The ventric tube, still inserted in his ventricle, is needing to be drained very infrequently. They clamped it off on Sunday and have been "popping off" every so often to drain the accumulated fluid. When his ICP numbers get in to the 20's for longer than a few minutes, they let it drain. The last time they did it was last night around 8:00 and prior to that it hadn't been done since the night before. When they drained it last, there was less fluid than the previous time they drained it. All these things are good signs. Once it doesn't need to be drained at all, they will take it out and then I can hold him again. To say I am looking forward to that would be the understatement of the year. I will be so happy to be able to hold him in my arms again.

We still have not heard anything on pathology. I am writing this from home, I met Jamie here for lunch during his break between classes. I will check when I get to the hospital, where I am headed in just a few minutes, to see if there has been any news.

Keep praying and sending positive energies.

My mom sent me this bible verse today:

For I know the plans I have for you, says the Lord. They are plans for good and not for evil, to give you a future and a hope. In those days when you pray, I will listen. You will find me when you seek me if you look for me in earnest.
Jeremiah 29:11-13
(Living Bible)

Love,
Karla
xoxox

Monday 8/29/05

2005-08-29T17:10:00.000-04:00

Another good night last night and a good day today. He was able to breathe on his own yesterday around 6:30 p.m. and continued throughout the night and all day today. I have been back at work most of the day today in order to ensure that I keep all my benefits for Theo. I used up all my FMLA on maternity leave. All this happened the weekend just before I was scheduled to return to work. It wasn't as hard as I thought it would be, but knowing he is doing well is helping. Also, everyone at work is being so wonderfully supportive, that it makes things a little easier.

Another EEG was done today just to check and there are still no seizures, and there are none. Since the Codman was taken out and the ventric tube clamped, he has only had to be "popped off" --unclamped--and allowed to drain a few times. This is a good sign that he is not producing too terribly much CS fluid. His ICP has remained good (except for the times when it needs to drain) and he has continued to do well.

I am getting ready to head back to the hospital now. We're still waiting on pathology results.

Keep us in your thoughts, prayers and meditations.

Continued Love,
Karla

Good news this morning! 8/28/05

2005-08-28T11:39:00.000-04:00

Theo had a good night last night, fairly calm. They had taken him off his fentenyl(the pain medication) and were giving him doses of ativan when he would become active or begin fighting against all his tubes and plugs and such. They were hoping to be able to leave him off the pain meds but decided to resume the most recent amount (half the original dose) due to his struggling each time the ativan wore off. After that he slept peacefully with no problems.

He went for another CT scan this morning around 9:30 which was read soon after by the neurosurgeon on duty, Dr. Highsmith. The scan shows very good reduction of swelling and good movement of the brain back towards the midline. He also told us that they had tested the fluid that has been draining from his ventricles and it shows no infection or abnormalities. The fluid has been getting steadily clearer and less in amount, also, which is good. The neurosurgeon is currently removing the Codman monitor, the one which measures ICP (intercranial pressure) and is located just under the skull. The other measurement of ICP comes from the ventricular tube which is inserted directly in the left ventricle. This one they will clamp off. They are leaving it in just in case more needs to drain--which it probably will, but that's to be expected. The Codman removal and the clamping of the ventric tube are both very good signs of lowering pressure and more normal amounts of CSF (cerebral spinal fluid) production. He is going to stay on his fentenyl for pain and the phenobarbitol for any seizure activity that may occur, though it doesn't appear that there any is right now. He is doing very well right now.

I know that the great progress we are seeing is a direct result of all the prayers, meditations, chants and loving, healing energies being sent our way. Please continue to pray and meditate and to send out love and positive energies. One of our neighbors, a jazz musician, is playing a Thelonious Monk song nightly on his stand up bass for our Thelonius. Any lovingkindness and healing thought, actions and prayers you send our way makes a difference. I know that it does and I can feel it too.

We still have not heard anything on the pathology report. We will most likely hear something tomorrow or the next day. Again, I am still currently focusing on the immediate situation which looks really good right now.

Love,
Karla

Here's Theo on July 22, 2005 just before his 2nd month birthday!

2005-08-27T22:19:00.000-04:00

8/27/05

2005-08-27T16:12:00.000-04:00

August 27

I am very tired today, even though I did get some sleep last night. Jamie stayed here at the hospital with Theo last night and is now at home napping. Theo is still stable, we are just waiting for the edema to continue to decrease and to see more and more higher brain function increase (voluntary movements, facial expression, visual tracking). They are going to do another CT scan either today or tomorrow to check on the swelling and the brain movement (hopefully more toward the norm). Everything else has remained the same. Little Theo is sleeping right now. They decreased his pain medication to see how he would respond and he got extremely agitated when the nurses were flushing IVs and clearing his breathing tube. He continued to fight and move and struggle, so to avoid his messing up any of his lines or tubes, he got a shot of ativan to calm the agitation. So he is sound asleep now. He looks very peaceful and sweet. He still has some hair--they didn't shave it all for the surgery-- but it is taped down under the bandages so he looks bald and the EEG leads left his skin irritated on his forehead, but he is still the most beautiful baby in the world.

I will be working 15 hours at the office next week and doing some work here from the hospital on laptop and with paperwork for about 15 hours to make up a total of 30 hours. I was told I could work 30 hours a week and keep my current benefits, but I must get back right away. I was out 12 weeks for maternity leave. How could anyone have forseen this would happen? The 30 hour a week schedule may work out pretty well. I can maybe work 10 hour days on Mondays, Wednesdays and Fridays while Jamie teaches his classes on Tuesdays and Thursdays, so one of us can be here every day of the week and both on the weekend. We are both holding up pretty well. All our wonderful friends and family have been just indescribably supportive, loving and helpful. Thank you all. Not to mention the thousands of people out there praying and meditating and chanting for all three of us--for healing and strength and faith. Thank you so much.

Again, we haven't got any news from pathology yet. We'll let you know when we do. Still no seizures and he continues to be on only the one medication for seizure. It is still looking good for now--just waiting and praying for the swelling to go down.

Keep up the prayers and love.

XOXO
Karla