tag:blogger.com,1999:blog-158108952024-03-04T23:06:37.076-05:00Baby TheoTheohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.comBlogger88125tag:blogger.com,1999:blog-15810895.post-74967367729220452302015-02-20T11:15:00.004-05:002015-02-20T23:38:20.352-05:00Nine Years<div class="separator" style="clear: both; text-align: center;">
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Today marks 9 years since the death of our son Theo.
Thelonius Luther Helbert Fueglein died on this day nine years ago in my arms and his father’s arms at 3:33
p.m. of a brain tumor. He was nine months old. He
would be 10 years old on his birthday this year, had he lived. He would be in
the fourth grade. He would still have blonde hair (I think) and his eyes were
hazel. He looked a lot like his father and a little like me and had these sweet
little lips with a perfect cupid’s bow. He loved the sound of the kitchen fan. He loved music. He loved to hear us sing to him. His fingers were like my father’s. His
face was as round and full as the moon, and as beautiful. <br />
<br />
Those are things I know for sure about him. There are a lot things I don't know. I don’t know what he would like for breakfast. I don’t know what books
he would like to read. I don’t know what super heroes he would like, or even if
he would. I don’t know what he would want to dress up for each Halloween. I don’t
know if he would be funny or quiet or bookish or like sports or play a musical
instrument or all of those. I don’t know if he would like to bake or dance or
if he would collect rocks or sticks or insects. I don’t know if he would be mischievous
or serious. I don’t know if he would like knock-knock jokes or Sponge Bob. I
wish I knew those things.<br />
<br />
I used to say I hated this grief. But I don’t hate it. My
grief serves only to reinforce my love for him. It exists only because of my
love for him. The thing about grief that so many people don’t seem to get is
that it is not bad. It is a natural and a normal response to the death of one
so precious. I don’t need to heal from it. Which is a good thing, because I’m
sure now that is not possible. Does it hurt? Yes. Would I trade it? Never. My grief exists only because of my deep and abiding love for my son. Which will
never, ever die. It makes absolute perfect sense that I will grieve for him
every day for the rest of my life. This is a normal response to an abnormal situation. Except it isn't quite as abnormal as we would all like to think or wish. How intense the feeling of grief is shifts and
changes day to day, month to month. Today it is pervasive. Today, it isn't very heavy.
There have been many, many days when it was so heavy I could barely stand. It
is not like that today. Thankfully. But, heavy or not, today it is pervasive.</div>
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There are many days that his death is not in the fore of my
thoughts. He himself is always in my thoughts, just as my living child is always
in my thoughts—never far, even if I am busy doing something else—they are there
in my mind and my heart, equally. The kinds of thoughts I have about each of
them are totally different. I don’t need to worry about the same kinds of
things for him that I do for my daughter. The things that occupy my mind
regarding each of them is very different. But he is there—always present with
me. </div>
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There are days like today that I wish I could do nothing else but sit with
photos of him, cry as much as I want, spend time thinking back to that day. All
of those days when he was here and I could feel the weight of his body, drink
in the smell of his skin, kiss his face with my lips, put my cheek next to his, nuzzle the hollow of his temple, bathe him, feed him, bask in the sensual realness of his presence.
I would love to spend time thinking of the days before the tumor when we had no
idea that our world was about to crash, that we would be forever and ever
altered. When he would look in my face and move his little mouth and, I swear, try to talk to me. I would like to spend time thinking back to the days after
the tumor when we had a different Theo, but still our Theo. I don’t spend a lot
of time anymore in those places, but I still want to.<br />
<br />
I miss the possibilities of all potential futures. The not
knowing what he would be like, the mistakes he would make, the successes he might have had, who he might choose for his friends, his lovers,
his partners, his career, whether he would get married or have children. All of
that I will miss out on for the rest of my life. But what I yearn for, what my
heart and my body, and my spirit, long and yearn for, so deeply that the pull
of it seems stronger even than gravity itself and which never, ever, ever
changes, nor will—not with any amount of time or ritual or writing, or prayer,
or candle lighting, or meditating—what I yearn for most is the tangible
holding, seeing, feeling, feeding, smelling, touching, kissing, hearing,
soothing, bathing, tending, mothering that I lost.<br />
<br />
I am grateful for the time I
had with him, which was far more than many parents get to have. But there could
never be enough. No amount of time to see your child grow and be—just be— is
ever enough. And I miss him. With every single cell of my body I miss him and I
long for him and I always will. Until my dying breath. When hopefully we will
be reunited. But even then, I cannot imagine
it could be better than the moments of shared breath, shared heartbeats, the
time of physical Earthly mothering that I had with him and that I long for and
that still calls to my body and to my heart and was as holy and sacred as any
spiritual union might ever be. I can close my eyes and remember. And that just
has to be enough. But it will never, ever be. </div>
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Forever missing and loving you Theo. 05/26/05—02/20/06<o:p></o:p></div>
Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com1tag:blogger.com,1999:blog-15810895.post-20702727623966331642013-02-19T18:40:00.000-05:002013-02-19T22:51:23.388-05:00The Seventh Year<div class="separator" style="clear: both; text-align: center;">
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</i><i>For Theo on this Seventh Year~</i>
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<br />
Every year I am faced with a blank page. Every year I sit and I try to figure out: <br />
<br />
What can I say this year?
What more can I say that I have not already said? <br />
<br />
What is there to say that can possibly express the reality, the depth, the completeness of being saturated daily in this grief?
<br />
<br />
What can I say to honor your precious little life, present on this earth for 270 days? <br />
<br />
8 months, 20 days.
<br />
<br />
39 weeks. <br />
<br />
You lived a lifetime in those weeks. We all did.
<br />
<br />
You were born a week before you were due, at 39 weeks, and you lived for 39 weeks.
<br />
<br />
Something in me wants to fold up into itself. A part of me wants to close my eyes and have none of this. To crawl into a deep cave and stay. To sink deep into the dark earth.
But I know that I will not do that. I don’t even think I’m capable of it. It’s not in me. Sometimes I wish it were.
<br />
<br />
I get tired of this grief. So tired of the pain. It comes, and every time it does, I am surprised by it's intensity and it makes me tired. But really, it's always here. Who knows this about me? So often, only me it seems. But I cannot, would not, give it up. The grief is entwined with the love. There are the same, woven together and mirroring each other. Like the ocean to the sky.<br />
One is not without the other. <br />
<br />
But it does get heavy some days. <br />
Days like this. <br />
And some days that are nothing like this.
<br />
<br />
How impossible to explain to those who don’t know, what it’s like to carry this. And why I feel the need to continue to try and try and try. Again and again and again. And yet again.
<br />
<br />
I have worked to create this sacred space for you inside my heart that has your name engraved on it, tattooed upon it. The heart that grew anew and belonged only to you when you came into this world. The heart that broke, split, and tore into ragged shreds when you left it. That heart remains broken, pieces sewn, patched, smoothed back, but forever rent.
<br />
<br />
Also forever open.
I remain open to ensure your space, the openness where I hold you. Where you continue on, and where you remain a part of my life daily, a part of our family, irreplaceable.
<br />
<br />
My heart that holds every single memory, every caress, every inhalation of your sweet skin, every moment our eyes held each other’s gaze –deep, deeper than any ocean.
<br />
<br />
Every painful crack in the walls of that heart, created bit by bit, as I watched your little body ravaged by surgeries and staples and tubes and poisons and ultimately by the tumor that completely crowded out your beautiful little brain and took your life away.
<br />
<br />
But even in that, I know, I know you were there, your sweet spirit was always there. You are a force. Stronger than I could ever imagine or that I could ever be. You were then, you are now.
<br />
<br />
Your immensity when I think on it, humbles me. It gives me cause to wonder and be in awe of the fact that <br />
<br />
I
<br />
am
<br />
your <br />
mother.
<br />
<br />
Your spirit is that of a bodhisattva. An enlightened spiritual teacher, a wisdom-being, a love-being. And you are my son. I saw you shine, with my own eyes.
<br />
<br />
I saw you shine. <br />
<br />
If I know nothing else, I know that.
<br />
<br />
And I know that you go on.
<br />
And because you do, I do.
<br />
~<br />
<br />
Thelonius Luther Helbert Fueglein
05/26/2005~02/20/2006
Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com10tag:blogger.com,1999:blog-15810895.post-5632303529550946532012-02-19T17:34:00.008-05:002012-02-19T19:10:51.760-05:006 Years (and Holding)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_BCtrDRPauSdMd6Gpxv0REQ4hoOgiCUSQsM1n7NDRox5I5KY7ijsTdvxnIzcFlXYeAIwgY_9mwDP2EXo2bUpqNjcdLHBtp-dRJP63knpxCaapTgdDZ_A0XEhyuqkAkuWFwzyR4w/s1600/Thelonius.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_BCtrDRPauSdMd6Gpxv0REQ4hoOgiCUSQsM1n7NDRox5I5KY7ijsTdvxnIzcFlXYeAIwgY_9mwDP2EXo2bUpqNjcdLHBtp-dRJP63knpxCaapTgdDZ_A0XEhyuqkAkuWFwzyR4w/s320/Thelonius.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5710985086648886834" /></a><br /><br />Coming up on another anniversary has gotten thinking about past anniversaries, and trying to figure out what to do each year to mark this occasion. I am a very ritual focused person--doing things to mark days, events, happenings. Those kinds of things are meaningful to me. But it seems like each year, I feel like I need to come up with something new, something more "honoring" in some way. I am pretty sure that isn't a good way to think about it, but it feels that way to me. The anniversary of my son's death feels different than all the other significant days--his birthday (we always do something fun, we get a cake, we get balloons, we let them go), Mother's Days, Diagnosis Days (I even let that one pass this past year with nothing to speak of significant happening), but the Day of the Death, seems different. Impending, it brings up all the questions and the unresolved "issues" I carry around with me. It looms.<br /> <br />The first anniversary of Theo's death, we went away to the beach. It was really mild February and there were very few people at the beach so we had it mostly to ourselves. I had a huge tantrum at God on the beach. Throwing sand, shells, pieces of driftwood as far as I could into the infinity of the ocean, throwing myself on the sand, beating and banging on in, jumping up and down, screaming, screaming at the top of my lungs "WHHYYYYYYYYY!!!?!?!?!?!" and "WHERE ARE YOU!?!?! WHERE ARE YOU?!?!," meaning God, not my child. But underneath meaning that too. Where was he exactly? And still, why? Why had this happened to him? To me? And how? How did it happen? "It's like winning the lottery, except backwards." One of his oncologists actually said that to us. Luckily she was a really sweet woman who I loved and still do and will never forget how she came to our house to see him. But yes, it was like that. A backwards lottery. The chances that my child would have a tumor like that were so slim--the chances really are better that I will win the MegaBall on Tuesday. Seriously.<br /> <br />I questioned, I railed, I challenged and begged God to please reveal to me, Why? and How? How was I supposed to live the rest of my life this way? And then what happened? Nothing. More wind, morewaves, in and out. Seagulls crying at me. Stupid woman on the beach. Snotting all over the sand and her sweater. I decided that I couldn't live that way, wondering, questioning. Questioning why, what, how, where. With no answer forthcoming that I could see, then, or potentially, ever. So. I decided to try really hard to live like some other people I know. Caring people, wonderful people who are full of goodness and love and heart and humor, but for whom the questions of God and Spirit never seem to be much of a bother. I don't mean people who go around living with blind faith, believing what everyone else has told them is true, and so therefore they don't have to question anything, but those people who have decided that those kinds of things just aren't that big a deal in their lives. That they can be happy, productive, peaceful, contributing citizens of the world without religion. I decided to really try hard to behave and act and feel like a person who hadn't spent a couple of decades or more seeking, metaphysically, spiritually, psychically, trying to figure out who I am, where I fit in, how to be closer to God, who God really was/is, how to find that connection…on and on. It seems I got the shittiest answer possible to all of my, "What is my purpose, what am I meant to do, just show me," pleadings that I'd put forth to the Universe fairly regularly for so many years. I figured shortly after my beach tantrum, that trying to find answers, connection, solace in something that didn't seem to recognize that I was there screaming and pounding on the beach, my heart and my spirit rent to shreds, that those kinds of questioning and never finding answers would just wear me down to an emptier shell of a human (if that was possible) and so I tried to just let it be and see if by doing that, maybe the answer would come. <br /><br />I do find some small measure of comfort in this quote by the poet Rainer Maria Rilke<br /><em>"…I beg of you, try to be patient toward all that is unsolved in your heart and to try to love the questions themselves like locked rooms and like books that are written in a very foreign<br />tongue. Do not now seek the answers, which cannot be given you because you<br />would not be able to live them. And the point is to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answers."</em> And I don't mean to understate what that quote means to me by saying I get a small measure of comfort. I think those words really allowed me to be ok with just letting the questions be. And that is pretty huge.<br /><br />I tried to do what he begged and did feel better. I know though, that those questions are still there. I have a really hard time loving locked rooms. I want to open them up. Closed doors make me feel shut off, closed in, as if there is probably something really bad behind them. Locked doors make me feel like Bluebeard's wife. I just want to get in there and see what's being hidden. And you know what happened to her. But still, my heart says I want to see what's there rather than wonder. Or trust, I guess. I do know that what we wonder and imagine is generally far worse than the reality. So I'd just rather see. And in the case of the wondering and imagining, where is my child?, when he has died and gone someplace…someplace I can't know about or see or even begin to imagine. And for all those people who don't have any idea what it's like to have no way possible to see, touch, feel, smell, even have a small, quick removed look at where my child is, what he knows, what he sees, what he perceives, what he experiences, to those who don't know what those kind of wonderings are like, who might say, "Oh, you can't think that way. You must have faith that he is in a better place, filled with peace and love and light." Those people can never understand. Maybe those things are true. But we cannot really, really know. Those of us who have children who have died, cannot know those things. Imagine trying to simply go on faith that your child is simply okay someplace else. Indeed, who simply goes on pure faith when we send our living children out someplace? To school, to dance class, to camp, to a friend's house for a sleepover, to sporting events, to day-care, to a church lock-in, to the mall or the movies with friends, off to college. Imagine not bothering to check into the programs, having no clue at all about what they are doing, what the place looks like, whether it's safe, or clean, or wondering whether the people who have them in their care are trained, do the administrators check on their staff's backgrounds, do reviews of staff performance. What person who has a child, no matter what age that child is, would feel fine with no idea, no clue, no real inkling of where her child is, what that child is doing, whether that child is truly safe and happy. Wouldn't any good mother want to know what her child's surroundings are like, what her child thinks about, where he is, what he's doing?<br /> <br />I did find a book I happen to love (and which I guess I should re-read) <a href="http://www.amazon.com/Finding-Hope-When-Child-Dies/dp/0684865610">by Sukie Miller called <em>Finding Hope When A Child Dies: What Other Cultures Can Teach Us</em>. </a>It shows us all the things that we all have in common with parents across cultures all over the world and what we all go through when our children die, but also tells of things that our culture (so based on the Judeo-Christian tradition and its systems of spirituality) doesn’t teach, or even allow. Did you know that there are some cultures where shamans help parents to know where their children are and what they are doing after death, even have ways to allow them to do things to continue to parent them on the other side. Of course that not being my own teaching from childhood, it's hard to actually believe it, I don't think I could really join with it, and have that be my experience of my son. But knowing it as a possibility elsewhere, holding open a space where that is possible, seems to comfort my heart a bit. I recommend that book to anyone whose child has died.<br /> <br />Anyway--coming up on 6 years tomorrow, missing him has not abated. It's never ok that he is not here. I am not debilitated anymore, I have plenty of love and good things in my life. But I don't have Theo. And I never will. Not in this life--and I don't even know for absolute certain that I will see him or be with him after this life. I hope and hope and hope and almost really believe that I will be with him again. But I don't really know it. Not like I know that the floor is going to be under my feet when I swing them out of the bed each morning. And that is never ok. And I still feel the pull of those questions and the anger at the complete destruction of my belief system, held so close in my heart for so many years, and I am still wandering in the ruins of it. How long will this go on? I don't know. Yet another question I try to simply hold. I haven't yet come even close to following Rilke's plea to "love the questions." I just do the best I can to hold them without having to worry at them all the time like a dog at a bone that won't crack open(damn those locked rooms).<br /><br />Trying to be ok with learning to be curious about other things, learning and growing in the grief. Holding the mothering questions in a fragile bowl knowing that tearing them to shreds won't bring me the answers. And maybe, maybe, maybe someday I will live my way into the answers. Not much comfort but that tiny modicum feels more peaceful than the renting and shredding. But I do also know that there is most definitely a place for renting and shredding. We do what we have to do.<br /><br />The only thing that I do actually feel I really know for sure is that my son's spirit<br />lives on. The essence of him is somewhere. That I do feel is true. When something feels true to me, really feels true to me, I am rarely wrong. So that I also feel comforted in. I know that grief shatters what we believe to be true. Our belief systems, our assumptions of truth, are destroyed. When you come to a place where you really do know now that things don't just happen to other people and anything terrible can happen anytime. Really. Everyone is different. After the devastation of grief, some people can find comfort in faith and their beliefs and have even a stronger connection to Spirit. I know that's true. I just guess I'm not one of those people. That only serves to hurt more. But I also take some insensible pride in it. I think for myself. If God didn't want me to think for myself, I wouldn't have the capacity to doubt or to question. I am rather thankful for that ability. I think we are meant to question and doubt. It's just when the whole thing comes tumbling down, it is really hard to see how to put it back together. The hell of it is that once it all falls apart, the pieces get completely transformed. Like a puzzle that you thought was mostly completed, which then gets knocked off the table, pieces all over the place, under the sofa, you're finding bits under the refrigerator months later. But once you pick them all up and put them back on the table, they images on the pieces and the shapes don't even match<br />anymore. It's a whole different picture you've never seen before.<br /> <br />Before my son had a deadly brain tumor, I never questioned the existence of God. I knew for sure that I was taken care of, I felt protected. And then I didn't. I remember the very instant I questioned, really questioned, actually thought, maybe there really isn't a God. I was on my knees in one of the parent sleep rooms, (made possible by the Ronald McDonald House), in the PICU, all the lights off, in the dark, city lights coming through the venetian blinds, casting bars on the industrial carpet, begging God to save my child, heal my child, restore him to health. I was even trying to make deals. And then immediately feeling angry that I should have to be reduced to making deals, and then feeling chastised and scared that by having such thoughts I was courting more punishment, and pain, and then becoming reduced simply to wails of pain and tears and only pleading. And stopping to wait silently. To feel, to hear…something, a response, an answer…I felt nothing, no one. Nothing and No One. It was the feeling you have when you knock on someone's door, and you wait, and hear nothing, and you just know it's empty. There's no one home. It was like that. God was not there. Maybe never had been. It was kind of shocking and also rather mundane at the same time. <br /><br />Now, I don't believe that God doesn't exist. Atheism just doesn't fit who I am. And also, if I believe there's no God, then how is it possible to feel the truth of my son's continuing spirit? I don't know--would that be possible? Maybe that's just another question to hold. But I don't believe that God doesn't exist. I do believe God exists. An all-encompassing God, a conscious intelligent creator force that knows me, knows you, knows us all. But then, if that force is creative, is it also destructive. But there are also all those serendipitous, synchronicitous, kismetic experiences that I cannot discount either. How do perfect congregations of time, place, space happen, if not for some Providence? Or Perfect Storms for that matter. I know it can also be a function of our amazing brains which try desperately to make sense on nonsense. But still. <br /><br />I came to a place long ago, before the birth and death of my son, where I realized the rightness of Truth is One, Paths are Many. No one has The Answer. This is what I love now about Buddhism, that there doesn't have to be an Answer. Even Buddha himself said to his followers when they asked about the existence of God and of Heaven. He said that he did not have the answers to give them. That we must each find our own answer through our own experience. If one must question a sage, a preacher, or a teacher (or a Buddha), about the existence of God or an afterlife, or what it is like, or what is right or wrong, then he or she will always rely on the answers of someone else. Which is what I had been doing my whole life. Clearly. At what felt at that time like the most desperate moment of my life, I was ready to fall back on a punishing, withholding, quid pro quo God who would deign to heal a tiny, blameless, beautiful, innocent baby of a terrible and devastating illness, only if I promised to be a "good Christian" and travel the world with my healed child to hold up as a shining testimony? Why would God have to be like that? Why was such a terrible thing happening to us anyway? Why should I even feel the need to make such arrangements, as if I could possibly have an effect on the reality of the situation. And at the moment when I needed those answers the most, they were not there. They still are not. Sitting with, holding the questions, coming to a place where we can just be with the truth that good and bad things happen and we are not in any kind of control. Perhaps that is the path to sanity and real peace.<br /> <br />I can feel the teeniest bit closer now to the truth, my truth. I still don’t know what that Truth is yet. How long will it take? I don't know. I try to hold the questions. I try to hold the curiosity. I try to see the beauty in the midst of the pain and ugliness. In the world, in a snowflake, in my daughter, in a blooming flower, in peals of laughter, in the time that my son existed physically in the here and now and I was able to experience his realness with all my senses. I hold those things right next to that the pain that he is no longer here. I will never experience him here with me physically ever again. I will be forever missing him. We will always be a family of four that looks to everyone else like a family of three. I was and am completely transformed by my loss, and by my grief. I don't like it, but I don’t have a choice about it. Or maybe I do, but I don't see what choice I have if there is one to have now. Not one that makes a difference to my short sighted, mortal, longing motherness that wants only to hold, smell, touch and hear her child.<br /> <br />So tomorrow, to honor our son's everlasting mark on our hearts, his too short time in this world, and mark the date of his passing from it, we will visit the Children's Museum to watch his little sister ride the train and paint, and run and slide, and look at fish, and then we will go to an awesome restaurant for lunch. We will do this as a family and will remember every second of the day that we are a family of four. And I think Theo would be very happy about the plans and I<br />hope that his spirit flies with us on our journey, not only tomorrow, but every<br />day of our lives.<br /> <br />In memory always of Thelonius Luther Helbert Fueglein, known to so many as Theo, and to his sister as "Brother". We love you and miss you every second of every day.<br />05/26/2005--02/20/2006Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com5tag:blogger.com,1999:blog-15810895.post-85443762156765622892010-02-21T11:02:00.004-05:002010-02-21T11:11:51.703-05:00Visit to Hollywood Cemetery<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsvEYGCtnYMLCHIeafnJtOpkiUvOyZXXvk73IHdz5bmLhFv5fz6BahtjTf0NbroJGox1zzGyIt_mJCahCOnYIBbhNxKedH8v8x1EPcW6PJrqv3-ROsHmJPdztDCmdf5ZauwsLSBg/s1600-h/IMGP6113.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5440730154543275618" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsvEYGCtnYMLCHIeafnJtOpkiUvOyZXXvk73IHdz5bmLhFv5fz6BahtjTf0NbroJGox1zzGyIt_mJCahCOnYIBbhNxKedH8v8x1EPcW6PJrqv3-ROsHmJPdztDCmdf5ZauwsLSBg/s320/IMGP6113.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr5oa4k5gDDd_e50kWRgi4hpCgVQoEjf60L8suLnRH_5h5AH64MUKZPEeEEhPfc-c_-q3F6BTbK6NFCqqTprfbfpGHQJzEIm7F8mbzcfIEMtWqwB8GXfQ23M3PQfPnag8M8jw9yw/s1600-h/IMGP6104.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5440730149242395906" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr5oa4k5gDDd_e50kWRgi4hpCgVQoEjf60L8suLnRH_5h5AH64MUKZPEeEEhPfc-c_-q3F6BTbK6NFCqqTprfbfpGHQJzEIm7F8mbzcfIEMtWqwB8GXfQ23M3PQfPnag8M8jw9yw/s320/IMGP6104.JPG" /></a><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr0t3RWkXvo9_HFD92ac27r-BUp3raLTHsEKIr2dlu7PhmYRpHOkQYqmFRco1_T5E4TRN-B3FGhHHf27UbelA57V0GHu-5kgXrdmrjcCwtnvSR7q6C_D5XORScUa-f2Fe5H-yHWQ/s1600-h/IMGP6098.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5440730140602693234" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr0t3RWkXvo9_HFD92ac27r-BUp3raLTHsEKIr2dlu7PhmYRpHOkQYqmFRco1_T5E4TRN-B3FGhHHf27UbelA57V0GHu-5kgXrdmrjcCwtnvSR7q6C_D5XORScUa-f2Fe5H-yHWQ/s320/IMGP6098.JPG" /></a><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLD-yLG4VedymNkmVuFfLQzSNWpxeq0MW3ajeBfeRKwXp5PDdP1h8jjfUzqCHAzcCH7dIuhwVctfG_vsaVMooXOdGW-PphQxxffEQ0eiG-u5_xp1IwsRHIYB3l-ffz6MFZEAJK-Q/s1600-h/IMGP6090.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5440730135694149106" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLD-yLG4VedymNkmVuFfLQzSNWpxeq0MW3ajeBfeRKwXp5PDdP1h8jjfUzqCHAzcCH7dIuhwVctfG_vsaVMooXOdGW-PphQxxffEQ0eiG-u5_xp1IwsRHIYB3l-ffz6MFZEAJK-Q/s320/IMGP6090.JPG" /></a><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS_fFDVh7CeBw9vfciP_0lAkUXwXfDHcEERWKEwTEr-ma3lcOUy4eholAoXzj55XbJeBRxtVyKBqpmCDJjbmENeufMJARmj1F8ZWUhbuqwP2s0wpESj_RwCYVLldoUZJsYqugYRw/s1600-h/IMGP6085.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5440729393558328002" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS_fFDVh7CeBw9vfciP_0lAkUXwXfDHcEERWKEwTEr-ma3lcOUy4eholAoXzj55XbJeBRxtVyKBqpmCDJjbmENeufMJARmj1F8ZWUhbuqwP2s0wpESj_RwCYVLldoUZJsYqugYRw/s320/IMGP6085.jpg" /></a><br /><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2Ay_WavsWtAuKkfybCA4PCBSMg3LRwB2bnnelqjf2neYaL6UftYP4vxlLl0HwHCkQ6C6Xxt5Ypph_38PWY4NvTmXd3aCleBKnGZ-F1VT3owcf4fNJips66Zeswl2BmI3rlcgVcA/s1600-h/IMGP6067.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5440729385275077506" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2Ay_WavsWtAuKkfybCA4PCBSMg3LRwB2bnnelqjf2neYaL6UftYP4vxlLl0HwHCkQ6C6Xxt5Ypph_38PWY4NvTmXd3aCleBKnGZ-F1VT3owcf4fNJips66Zeswl2BmI3rlcgVcA/s320/IMGP6067.JPG" /></a><br /><br /><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixLZAZLSBqqdeRg__y0OJmTP37IA5zfmnreTdVvRgWKaR7z5_kafXEEvoOrK0lyN1pQjgw6x1HEJZNEefW9MXk1mq62EQIS_hgWph-YfOeQkfxeNSDagco3k5ROq8stz3iguwscw/s1600-h/IMGP6054.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5440729371454259618" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixLZAZLSBqqdeRg__y0OJmTP37IA5zfmnreTdVvRgWKaR7z5_kafXEEvoOrK0lyN1pQjgw6x1HEJZNEefW9MXk1mq62EQIS_hgWph-YfOeQkfxeNSDagco3k5ROq8stz3iguwscw/s320/IMGP6054.jpg" /></a><br /><br /><br /><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBFjQGt3mwo_FwcZm5HWIsHVUQYg0FmoLmWYgd2byKW6Qvu_ECy6-nuKQosNoRTtf_oa93fLBKUHVqsaQAJWnrFi6kc8iZ5Jf6UDAhzqn6yaw7ddqVjbkaUeEWJQ8Doc3T-BKb2g/s1600-h/IMGP6053.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5440729368001776466" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBFjQGt3mwo_FwcZm5HWIsHVUQYg0FmoLmWYgd2byKW6Qvu_ECy6-nuKQosNoRTtf_oa93fLBKUHVqsaQAJWnrFi6kc8iZ5Jf6UDAhzqn6yaw7ddqVjbkaUeEWJQ8Doc3T-BKb2g/s320/IMGP6053.jpg" /></a><br /><br /><br /><br /><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr3N2oaS-IQ3_hW3ISvPK8UTtDHeDFSDiMq8-HTvZ-gxTRNa4Hbd3kkx2eZpgtApmOP3sz9JCYPSfjfX5KH3Xbvgm7azpNScqSf_bx5DftjUGhpn4x7vhDgHjfRGB2s8CnQyrzRA/s1600-h/IMGP6028.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5440729363755943778" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr3N2oaS-IQ3_hW3ISvPK8UTtDHeDFSDiMq8-HTvZ-gxTRNa4Hbd3kkx2eZpgtApmOP3sz9JCYPSfjfX5KH3Xbvgm7azpNScqSf_bx5DftjUGhpn4x7vhDgHjfRGB2s8CnQyrzRA/s320/IMGP6028.JPG" /></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><div>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.</div><br /><br /><br /><br /><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><br /><br /><br /><br /><div></div></div></div></div></div></div></div></div></div>Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com1tag:blogger.com,1999:blog-15810895.post-42600694828060805372010-02-20T09:27:00.005-05:002010-02-20T10:57:10.702-05:00Fourth Anniversary<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQnLldt2m-3IjElKKfgGK-7np5Z2NB8NiRcNLWs03bE_ipFP74gVsgUw3G5zhGOf6pbpos0_VRldh38p0Cz2v06-VuRKAsPsxwsNuXYwmuXviN5mJM0QzsGUyqzTZiOKqLQecNtg/s1600-h/57.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 214px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5440355236231307650" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQnLldt2m-3IjElKKfgGK-7np5Z2NB8NiRcNLWs03bE_ipFP74gVsgUw3G5zhGOf6pbpos0_VRldh38p0Cz2v06-VuRKAsPsxwsNuXYwmuXviN5mJM0QzsGUyqzTZiOKqLQecNtg/s320/57.jpg" /></a><br /><div><div><em>An event has happened, upon which it is difficult to speak, and impossible to remain silent.<br /></em>~Edmund Burke<br /><br />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.<br />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.<br /><br />I love you Theo, I miss you. </div></div>Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com3tag:blogger.com,1999:blog-15810895.post-24251157323117683502009-12-28T14:34:00.001-05:002009-12-28T14:40:05.600-05:00Grieving the Death of a Child Through the HolidaysMaking it Through the Holidays While Grieving the Death of Your Child<br />By Karla Helbert, MS, LPC<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Karla Helbert, MS, LPC<br /><br /><br />Some helpful online resources:<br /><br /><a href="http://www.missfoundation.org/">The MISS Foundation </a><br /><a href="http://www.bereavedparentsusa.org/">Bereaved Parents USA</a><br /><a href="http://www.compassionatefriends.org/">Compassionate Friends</a><br /><a href="http://www.kotapress.com/">KotaPress<br />http://stockingfortheo.blogspot.com</a>Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com1tag:blogger.com,1999:blog-15810895.post-21431758696994300492009-02-20T08:45:00.003-05:002009-02-20T08:59:14.931-05:00Anniversary Day<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJh35Z-_p_LalG7pn3P_Lz6SED7PZg40v9dncjnjMLPisUiZuRwFGFueTg44b02TuK3dvcHru7T0tGtvhHIn_ItkpFmgG6KyhS2ww-ugck_LJONBr3_v3G6y9nxS10Alg6WUF8Tg/s1600-h/59.jpg"><img id="BLOGGER_PHOTO_ID_5304877034683146146" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 214px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJh35Z-_p_LalG7pn3P_Lz6SED7PZg40v9dncjnjMLPisUiZuRwFGFueTg44b02TuK3dvcHru7T0tGtvhHIn_ItkpFmgG6KyhS2ww-ugck_LJONBr3_v3G6y9nxS10Alg6WUF8Tg/s320/59.jpg" border="0" /></a><br /><div></div><br /><div>February 20, 2009<br /><br />To My Beautiful Baby Boy:<br /><br />Dear Theo, </div><div> </div><div>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 <em>know</em> it happened, but sometimes I just can’t believe that we went through it all. That something so terribly awful happened to us. </div><div> </div><div>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: "<em>How did you do it</em>?" 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, "<em>I don't know how you did it</em>.” 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. </div><div> </div><div>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—“<em>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</em>”—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.<br /><br />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 <em>soul</em> 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.<br /><br />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 <em>when</em>. 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.<br /><br />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.<br /><br />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, "<em>how did we do that</em>?" 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.<br /><br />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, “<em>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.” </em>Yes.<br /><br />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.<br /><br />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.<br /><br />I love you and miss you today and every day. And I am so thankful to be your mother.<br /><br />Love Forever,<br />Mama </div>Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com4tag:blogger.com,1999:blog-15810895.post-27605872781405855302008-02-22T10:37:00.008-05:002008-12-09T17:16:24.854-05:00Two Years--February 20, 2008<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1ctJlK3dKH1g8cBY3rI7lZvNKRrxFZB3gvdX_46pRGieFcscsdvOa-7p548hGJP5S235athH5a6zYIlTcGmssQ7-X6gaDESobmU_QWtZe7MkIJ9NIIHZVjPE2Cw80SVXSNvar4g/s1600-h/Thelonius.JPG"><img id="BLOGGER_PHOTO_ID_5169829403030874178" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1ctJlK3dKH1g8cBY3rI7lZvNKRrxFZB3gvdX_46pRGieFcscsdvOa-7p548hGJP5S235athH5a6zYIlTcGmssQ7-X6gaDESobmU_QWtZe7MkIJ9NIIHZVjPE2Cw80SVXSNvar4g/s320/Thelonius.JPG" border="0" /></a><br /><div>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. </div><div></div><div>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. </div><div></div><div>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. </div><div></div><div>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. </div><div></div><div>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. </div><div></div><div>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. </div><div></div><div>No matter how many years pass, they will all be there. </div><div></div><div></div><div>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. </div><div></div><div></div><div></div><div>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.</div><div></div><div>Please feel free to watch. He is beautiful. </div><div></div><div>This is the link to Part 1:</div><div><a href="http://www.youtube.com/watch?v=1x9lt4_Fb0U">http://www.youtube.com/watch?v=1x9lt4_Fb0U</a></div><div></div><div>And Part 2:</div><div><a href="http://www.youtube.com/watch?v=0LJDqXLw-3I&feature=related">http://www.youtube.com/watch?v=0LJDqXLw-3I&feature=related</a></div><div> </div><div> </div><div></div>Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com4tag:blogger.com,1999:blog-15810895.post-2653381961012987872007-08-20T11:04:00.001-04:002008-12-09T17:16:25.007-05:00August 20, 2007<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAVg33B_GwPl0vqrIYx3khmZmf5CzIbPXDXR7O7YpkL4XRcFqyS2EwzV6pFEaCoXxDEgEtZphyphenhyphenEwzJ4gPQn3Mp2v1XwmbHtLFiuIU5kLCj2UWUJC3LaBPz1p2mCQx3HxRlNon32Q/s1600-h/dragonfly_green_darner.jpg"><img id="BLOGGER_PHOTO_ID_5100799193904580930" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAVg33B_GwPl0vqrIYx3khmZmf5CzIbPXDXR7O7YpkL4XRcFqyS2EwzV6pFEaCoXxDEgEtZphyphenhyphenEwzJ4gPQn3Mp2v1XwmbHtLFiuIU5kLCj2UWUJC3LaBPz1p2mCQx3HxRlNon32Q/s200/dragonfly_green_darner.jpg" border="0" /></a><br /><div><br />August 20, 2007<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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. </div><div> </div><div>Please do visit Theo's new memorial web-site at <a href="http://www.babytheo.virtual-memorials.com/">www.babytheo.virtual-memorials.com</a> </div>Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com2tag:blogger.com,1999:blog-15810895.post-45101628911864984942007-07-04T13:41:00.000-04:002007-07-04T13:53:30.607-04:00New Tattoo<a href="http://i174.photobucket.com/albums/w81/karlarie/DSC00655.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 200px; CURSOR: hand" alt="" src="http://i174.photobucket.com/albums/w81/karlarie/DSC00655.jpg" border="0" /></a><br /><div><br /><br /><div><a href="http://i174.photobucket.com/albums/w81/karlarie/DSC00687.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 200px; CURSOR: hand" alt="" src="http://i174.photobucket.com/albums/w81/karlarie/DSC00687.jpg" border="0" /></a> I went yesterday evening to get my new dragonfly tattoo. It was done by Josh Brown at Absolute Art in Richmond.<br /></div><div>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). </div><br /><div>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!!<br /></div><div>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.</div><br /><div>The photos of the dragonflies were taken by Jamie in the park near our house.<br /><br /></div><div><a href="http://i174.photobucket.com/albums/w81/karlarie/DSC00653.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 200px; CURSOR: hand" alt="" src="http://i174.photobucket.com/albums/w81/karlarie/DSC00653.jpg" border="0" /></a><br /><br /><br /></div><br /><br /><div></div><br /><br /><div><br /><br /><br /></div><br /><br /><div></div><br /><br /><div><br /><br /><br /></div><br /><br /><div></div><br /><br /><div><br /><br /><br /></div><br /><br /><div></div></div>Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com0tag:blogger.com,1999:blog-15810895.post-56298705085021731742007-06-07T22:28:00.000-04:002007-06-07T23:28:43.072-04:00Theo's Birthday<div><a href="http://i174.photobucket.com/albums/w81/karlarie/DSC00468.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 296px; CURSOR: hand; HEIGHT: 224px" height="220" alt="" src="http://i174.photobucket.com/albums/w81/karlarie/DSC00468.jpg" border="0" /></a> <a href="http://i174.photobucket.com/albums/w81/karlarie/DSC00493.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 236px; CURSOR: hand; HEIGHT: 339px" height="380" alt="" src="http://i174.photobucket.com/albums/w81/karlarie/DSC00493.jpg" border="0" /></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br />Here is Theo's stone. We placed it on his grave on his second birthday, May 26, Memorial Day weekend. </div><div><br /> </div><div>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.</div><div><br /></div><div>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.<br /></div><div> </div><div> 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.</div><br /><br /><div><br /></div><div> 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.</div><div> </div><div><br /> </div><div> 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). </div><div></div><div><br /> </div><div> 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. </div><div> </div><div><br /> </div><div>Happy Birthday to my Baby Boy~~</div><div><a href="http://i174.photobucket.com/albums/w81/karlarie/DSC00479.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 200px; CURSOR: hand" alt="" src="http://i174.photobucket.com/albums/w81/karlarie/DSC00479.jpg" border="0" /></a><br /></div><div></div><div><br /></div><div></div><div><br /></div><div></div>Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com1tag:blogger.com,1999:blog-15810895.post-1172035631129146652007-02-21T00:26:00.000-05:002007-02-21T10:35:41.510-05:00One YearAt 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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />11:50 p.m.<br />2/20/2007Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com2tag:blogger.com,1999:blog-15810895.post-1161706298076454512006-10-24T12:06:00.001-04:002011-03-26T09:26:34.602-04:00Noah's Children Fundraising GalaHi Everyone--<br />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.<br /><br />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!).<br /><br />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.<br /><br />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!<br /><br />Love to all--Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com3tag:blogger.com,1999:blog-15810895.post-1158100736957183632006-09-12T18:36:00.000-04:002006-09-12T18:38:56.976-04:00It's been a while<a href="http://photos1.blogger.com/blogger/5671/1476/1600/family%20002.0.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;" src="http://photos1.blogger.com/blogger/5671/1476/320/family%20002.0.jpg" border="0" alt="" /></a><br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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”. <br /><br />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. <br /><br />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. <br /><br />Love, <br />KarlaTheohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com1tag:blogger.com,1999:blog-15810895.post-1149640700971673122006-06-06T19:48:00.000-04:002006-06-06T20:38:21.173-04:00Memorial Photos<a href="http://photos1.blogger.com/blogger/5671/1476/1600/Theo"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="http://photos1.blogger.com/blogger/5671/1476/320/Theo%27s%20memorial%20015.jpg" border="0" /></a><br /><a href="http://photos1.blogger.com/blogger/5671/1476/1600/Theo"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="http://photos1.blogger.com/blogger/5671/1476/320/Theo%27s%20memorial%20009.jpg" border="0" /></a><br /><a href="http://photos1.blogger.com/blogger/5671/1476/1600/Theo"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="http://photos1.blogger.com/blogger/5671/1476/320/Theo%27s%20memorial%20014.jpg" border="0" /></a><br /><a href="http://photos1.blogger.com/blogger/5671/1476/1600/Theo"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="http://photos1.blogger.com/blogger/5671/1476/320/Theo%27s%20memorial%20025.jpg" border="0" /></a>Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com0tag:blogger.com,1999:blog-15810895.post-1149629789739246392006-06-06T17:25:00.000-04:002006-06-08T09:16:11.056-04:00Theo's BirthDay Weekend<a href="http://photos1.blogger.com/blogger/5671/1476/1600/wedding%20026.1.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="http://photos1.blogger.com/blogger/5671/1476/320/wedding%20026.1.jpg" border="0" /></a><br /><br />I wanted to share some photos from the weekend of Theo's memorial and birthday weekend.<br /><br />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.<br /><br />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!).<br /><br />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.<br /><a href="http://photos1.blogger.com/blogger/5671/1476/1600/wedding%20118.1.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;" src="http://photos1.blogger.com/blogger/5671/1476/320/wedding%20118.1.jpg" border="0" alt="" /></a><br /><a href="http://photos1.blogger.com/blogger/5671/1476/1600/wedding%20033.0.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="http://photos1.blogger.com/blogger/5671/1476/320/wedding%20033.0.jpg" border="0" /></a><br /><br />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 <em>be </em>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.<br /><br />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.<br /><br />I think the poem was written by a man named Henry VanDyke, though I have found varying versions of it attributed to other people.<br />I have changed it a little here for Theo.<br /><br />~~~~~<br />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.<br /><br />Then someone at my side says: “He is gone!”<br /><br />“Gone where?”<br /><br />Gone from my sight. That is all.<br />The diminished size of the ship is only my perception.<br /><br />And just at the moment when someone at my side says:<br />“He is gone! He is gone!”<br />There are other eyes watching the ship come nearer,<br />Other voices ready to take up the glad shout:<br /><br />“Here he comes! Here he comes!”<br />~~~~~~~~~~~~~~<br /><br /><a href="http://photos1.blogger.com/blogger/5671/1476/1600/wedding%20085.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="http://photos1.blogger.com/blogger/5671/1476/320/wedding%20085.jpg" border="0" /></a><br /><a href="http://photos1.blogger.com/blogger/5671/1476/1600/wedding%20034.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="http://photos1.blogger.com/blogger/5671/1476/320/wedding%20034.jpg" border="0" /></a>Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com2tag:blogger.com,1999:blog-15810895.post-1146777025580422992006-05-04T16:27:00.000-04:002006-05-04T21:36:38.570-04:00May 4, 2006<a href="http://photos1.blogger.com/blogger/5671/1476/1600/dragonfly.0.gif"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="http://photos1.blogger.com/blogger/5671/1476/320/dragonfly.0.gif" border="0" /></a><br /><br /><p>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. </p><p>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. </p><p>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. </p><p><br />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.<br /><br />Love to all,</p><p>Karla</p>Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com1tag:blogger.com,1999:blog-15810895.post-1145930347871157082006-04-24T21:15:00.000-04:002006-04-24T22:09:16.063-04:004/24/2006Sorry 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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />I will post more later to update you on the move.<br /><br />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. <br /><br />Love to all,<br />KarlaTheohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com2tag:blogger.com,1999:blog-15810895.post-1145563681807480932006-04-20T16:07:00.000-04:002006-04-21T13:57:58.136-04:00Yoga Class in Theo's HonorDear Baby Theo's loving friends,<br /><br />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.<br /><br />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.<br /><br />The upcoming Memorial Service and Theo's Life Celebration will be an opportunity to bring us all together.<br /><br />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.<br /><br />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<br /><br />Email Karla at this address or Nora directly at <a href="mailto:vimala@erols.com">vimala@erols.com</a>Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com1tag:blogger.com,1999:blog-15810895.post-1143862494356856182006-03-31T21:33:00.000-05:002006-04-01T10:16:42.130-05:00Follow up to 3/30I 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. <br /><br />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. <br /><br />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. <br />We still need your love and support. Thank you.<br />Love to you,<br />KarlaTheohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com3tag:blogger.com,1999:blog-15810895.post-1143777804544333162006-03-30T22:15:00.000-05:002006-04-10T20:13:25.306-04:003/30/05It's been a month and ten days since Theo died.<br />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.<br /><br />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.<br /><br />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.<br /><br />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?”<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Love,<br />KarlaTheohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com0tag:blogger.com,1999:blog-15810895.post-1142975662631167862006-03-21T15:42:00.000-05:002006-03-25T21:18:26.613-05:003/21/2006 SpringtimeJust 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.<br />~~~~~~~~~~~~~~~~<br /><br />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.<br />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. <br /><br />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..."<br />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 <em>feels</em> like he is still here. I can <em>feel</em> him around me or nearby. Not in a "woo-woo" (as my friend Lenore says), <em>ooh I can feeeel him all around me</em> 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.<br /><br />I was reading a passage from the Bhagavad Gita about the True Self, that Self that never dies, which says:<br /><br />The Self dwells in the house of the body,<br />Which passes through childhood, youth and old age.<br /><br />So passes the Self at the time of death into another form.<br />The wise know this truth...<br /><br />Not pierced by arrows, nor burnt by fire,<br />Affected by neither water nor wind,<br />The Self is not a physical creature.<br /><br />Not wounded, not burnt, not wetted, not dried,<br />The Self is ever and everywhere,<br />Immovable and everlasting.<br /><br />There are some who have realized the Self<br />In all its wonder. Others can speak of it as wonderful. <br />But there are many who don't understand even when they hear.<br /><br />Deathless is the Self in every creature.<br />Know this truth, <br />and leave all sorrow behind.<br /><br />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 <strong>know</strong>. But that isn't the case either, because I <strong>know</strong> 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. <br /><br />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.<br /><br />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.<br /><br />I will continue to post to let you know how we are.<br /><br />Love,<br />KarlaTheohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com1tag:blogger.com,1999:blog-15810895.post-1142464816015125452006-03-15T17:01:00.000-05:002006-03-16T08:38:39.543-05:00Theo's Memorial ServiceThis 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.<a href="http://photos1.blogger.com/blogger/5671/1476/1600/happysleep.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="http://photos1.blogger.com/blogger/5671/1476/320/happysleep.jpg" border="0" /></a> 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 <em>was </em>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.<br /><br />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.<br /><br />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.<br /><br />The date for the memorial service is set for Theo's first birthday, Friday May 26, 2006,<br />at 7:00 p.m. in the First Unitarian Church at 1000 Blanton Avenue in Richmond.<br />This is the church next to the Carillon Bell Tower near Dogwood Dell and Maymont Park.<br /><br />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.<br /><br />Love,<br />KarlaTheohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.comtag:blogger.com,1999:blog-15810895.post-1142011948074058472006-03-10T12:31:00.000-05:002006-03-11T19:26:34.366-05:00Thelonius Dragonfly<a href="http://photos1.blogger.com/blogger/5671/1476/1600/dragonfly.0.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="http://photos1.blogger.com/blogger/5671/1476/400/dragonfly.jpg" border="0" /></a><br />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.<br />Thank you to Lisa for this beautiful tribute to Theo. (Click on the picture to enlarge it)<br /><strong>Waterbugs and Dragonflies</strong><br /><br />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.<br /><br />"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.<br /><br />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.<br /><br />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."<br /><br />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.”<br /><br />And the dragonfly winged off happily into its wonderful new world of sun and air.<br /><br />Doris Stickney (1982)<br /><br /><br /><br /><br /><strong></strong>Theohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.comtag:blogger.com,1999:blog-15810895.post-1141753035064099232006-03-07T11:41:00.001-05:002006-03-07T23:59:16.770-05:0003/07/2005I 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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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 <em>really</em> 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 <em>reality</em>)experience, that means that in my mind, with only my memory of him, I can completely and authentically, re-experience being with Theo. <br />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. <br /><br />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. <br /><br /><br />Love,<br />KarlaTheohttp://www.blogger.com/profile/06583514110313117718noreply@blogger.com2