August 20, 2007

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

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

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

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