I have been very worried that people will be upset or offended by my last post. I have made more changes to that post, spent more time on it, writing what was in my head, changing it, re-writing it again and again, saving it as a draft, changing it agin, then posting it and editing it three times the first day I posted it, trying so hard to get it to express exactly what I wanted it to without hurting anyone's feelings and have had a very hard time doing that. I have spent more time on that last post than on any other in the entire blog. I've been going through a period of anger and bitterness for a few days. I have been through periods like this before, there have been many times throughout these months I've felt anger; anger directed toward God, toward cancer, toward things unseen or unnamed. And through all of that, you have all been supportive of me. Now in this last post, it seems like I am directing anger toward those who have been my supports. I don't want it to seem that way. I hope that nobody takes it that way. I think the periods of anger that all bereaved people go through are frequently misdirected. That may be the case here--misdirected anger. I don't have any concrete place to direct it. Many times people become angry at the person who has died, working through those feelings eventually. But it is impossible to be angry at Theo on any level--I can't possibly direct any anger toward him. Impossible. I don't have that in me. All thoughts of Theo bring with them love, sometimes sadness, but always love, love, love. So, that leaves a lot of other places to direct (or misdirect) angry feelings. Mostly, it does no good at all--it does no good to be angry at God, or at cancer, or at random people. And it definitely does no good to direct anger toward people who have tried to help and support me. It does no good to spew misdirected anger in random directions, but it must be gotten out so that it can be changed to a different sort of energy. That's what I've been trying to do, to get it out so it can be transformed somehow. To something more constructive. And I can't get away from it being there. I don't even know why. There is no one I can justifiably be angry at. I could be mad at God, and have been, but it is pointless and just causes further hurt later, resulting in the inability to have a relationship with Spirit and therefore no spiritual comfort; so God anger must be resolved. And I don't believe God did this. I have to also believe that God could not heal him, or Theo would have been healed. But even if I do get mad at God, at least God understands. Somebody who lost a child told me that she believed God took her anger and turned it around and transformed it , taking it in and then sending it back to her in the form of love and peace and strength. I want all my negative feelings sent back to me in that way. I want to take back the transformed engery and then make it into something good, sending it back out changed again as something good, creative, helpful. Anger resulting from great pain and grief is a necessary thing, usually unavoidable, and it must go somewhere once it comes out. The stages of dying that Elisabeth Kubler-Ross made famous also apply to the grieving and bereaved. I know I definitely fit into one of those stages at any given moment. Denial came and went quickly when I didn't want to believe that my baby had anything wrong with his brain. Sitting on the sofa with him that first morning when our lives changed, watching his uneven movements and his little eyes, one closed, one open, the little voice in the back of my mind whispering "brain problems, brain problems, something is wrong with his brain." I pushed it away immediately, denying it, not telling the pediatrician on the phone, but knowing in the ER I had to say something, feeling terrified to acknowledge the fear that was much more manageable pushed way down and back. I didn't want to believe that his brain would or could be damaged. They kept telling me in the hospital, looking at the scans after the surgery, "We can't say how much damage might be there, we have to wait until the swelling goes down, some of this dark area may be stroke or damage, but could just be swelling"--they had their own medical brand of denial. I don't think any of them really wanted to believe that his brain might be damaged from the tumor and certainly not from the very interventions that had saved his life. When the scan was revealed showing indisputably the extensive brain damage, we were completely surprised, shocked, devastated, all our hope dashed, because we had not been able on any level to acknowledge that in all the previous scans, there were probably signs of that damage occurring, and neither could our doctors, I think. Poor Jamie was there alone when the news came. I didn't want to believe that the cancer would kill him. I didn't want to believe for an instant, until I had no other choice, until we had to make the choice to allow it, to bring him home with us and spare him as much pain as possible, knowing the outcome. But I moved quickly past the denials, thank goodness. That is a terrible place to be: not a useful place to be. You can't even admit that you're there. A good place only for a short time. We are safe and cushioned there for a while, but staying there is very dangerous. We can only come out once we have the strength to know what is true. The rest of the stages, anger, depression, acceptance, bargaining. Those things come and go. We flounder back and forth among anger, bargaining, depression; all of which include a good deal of fear. All those things come out of fear. That's why love and support can bring you out of those dark places. Love cancels out fear. I don't even know if we ever get fully to acceptance. It certainly doesn't feel that way right now. Do I accept that he is gone? I know that he is dead, but I don't know when I will be able to say that I fully and peacefully accept that. I don't know. Maybe knowing it and sometimes (when not angry or feeling depressed about it) feeling peaceful about it means acceptance. I don't know. I know these stages don't occur one by one in stages, they come and go. Anger is one of those that comes and goes, usually, for me, quickly.
I apologize if I hurt anyone's feelings or caused any discomfort or pain with my comments on the last entry. I don't want to make excuses, but I am anyway. They are, at least, good ones. I don't have a choice but to go through these feelings. Anger, misdirected and otherwise, happens through the process of grieving. The work of greif can't be done without the negative feelings that are part of the process. Anger is one of the chief negative feelings. Eventually the negative and difficult feelings have to come out, the fear, the anger, the sadness, the pain. Otherwise, those angry, depressed, desperate feelings stay bottled up and eventually start to wear away at the heart. I can't keep bad feelings inside, I have to let them go and let them be changed to something else; hopefully something that can do some good; for me, for others, for some constructive purpose.
I hope that you can bear with me. I do appreciate and need support from all of you, in whatever form. Whether you email me, or post a comment or pray for us or meditate on us, chant for us or send positive, strengthening, peaceful energy and light.
We still need your love and support. Thank you.
Love to you,
Karla
Friday, March 31, 2006
Thursday, March 30, 2006
3/30/05
It's been a month and ten days since Theo died.
I've been hearing from a lot of people that I am doing really well. So many people ask, “How are you?” and I can’t tell you how difficult it is to answer that question. Even when I know people are asking because it's a social thing and the expected answer is, "fine" or "good, how are you?". I usually just say, "I'm doing ok". I think I am doing ok. But it isn’t that simple. I frequently hear, “You seem to be doing really well” or, “You look great” or, “You are such a strong person”. These comments set off strange feelings. Sometimes, I have a lot of mixed feelings about everybody thinking I’m doing so well. Sometimes I feel as if people are surprised, that the expectation is that I should be devastated, barely able to function, with swollen eyes, tear-streaked face, glazed eyes. As if I should be commended for doing so well and it bothers me sometimes. I know if nobody asked me how I am feeling or how I am doing, I would be upset and feel that nobody cares. I don’t want anybody thinking that I’m some poster-mom for strength in a tragedy or an example how to do well while grieving. And I would never want anybody else going through this to get the impression that it's been easy. I'm not always doing so great. I cry a lot. I get angry. I still feel shards of bitterness. People still make inappropriate comments about the afterlife and Theo’s new state of being and Universal plans.
There are certain things that people should not say to parents who have lost a child. Especially when people don’t know the parents all that well. My baby is not in a better place. God does not need another angel. I do believe that Theo is watching over us, that he sees and feels us, and that he is helping me in many ways, but I don't for one second believe that he is dead because "God needed another angel". People tell me I can have another baby. Some people who bring up new babies (usually people bring it up more with me than with Jamie, but it happens to him, too) ask whether we will have another baby or if we want another baby or tell me (or him) that we should have another baby. Things like, “You’re young, you can have another baby.” Nobody tells a widow she can get another husband; or an amputee that he can get another arm; or a brain injured person she can get another brain. No new baby could ever fill the empty place that reminds me near constantly that my Theo is gone and I can never again hold him, never coo to him, never smell his scent again. Sometimes asking whether we plan to have more children might be appropriate, but sometimes not, and so much depends on how it is said. Another hurtful thing is the "he is in a better place" comment. No parent who has lost a child, even if they comfort themselves with the thought that their baby is somewhere safe, warm, comfortable and happy, really feels there is a better place than in the loving embrace of mama and daddy. I am so very glad that he is no longer in any pain, but I don't think he is in a better place. A different place, a good place, but not better. Sometimes I wish people would refrain from telling us that “God has a plan.” This might make some people feel better, and may even be true; but most of us who have lost our children don’t care that God has a plan,even if we believe there is a plan. There very well may be a plan, but we don’t much care for it. Or when people say things like, “he was too good for this Earth.” That bothers me. He was goodness itself, and would’ve done Earth a world of good had he been able to stay. I know he would have. When our child is terminally ill, don’t tell us things like “your doubt may be keeping your son from being healed.” I shouldn’t even have to explain the reasons behind that one.
I know that people who say these things are trying to be helpful. I don't want to hurt anybody's feelings or alienate anybody or sound unappreciative. I appreciate the gesture, the attempt. I know that I have put our lives out on display by writing these posts and allowing hundreds, maybe thousands of others inside our journey. I know that by doing that, I am inviting comments and making it possible for people who don't know us to know us through these words. And I am glad that I have done it. But I would like to ask that people please think about what is said to a parent who has a terminally ill child or whose child has died. Say, “I am so sorry”, admit that it is awful and sad and that you may not know what to say. We know how terrible it is, talking about it doesn't make it worse, it makes us feel not so alone. Don't be afraid to mention the child's name, we are already thinking of him and we like to hear other people talk about him or remember him. Let us know you care, let us know that you are there for us, that you’re thinking of us, that we are loved. That we are in your thoughts, your prayers, your meditations.
Sometimes when people talk or write about how well I’m doing, I can’t help but feel disturbed. I know people mean well, but sometimes I just feel that saying how great I seem to be doing minimizes the gravity of the situation--not that anyone thinks that, it's only how I feel. I know no one thinks that. Or I feel guilt over the thought that so many people have the impression that I’m doing so well. And I know there are a lot of people who think I am doing really well. And I guess in the whole scheme of things, I am doing well, I know that I am doing better than a lot of people would be. But I also think it’s normal to go through feelings like these. I think about and talk about how normal all the things I go through are. Telling myself, this is normal to feel this way, or that way or to feel angry or bitter or to have good feelings. Several times people have said things or posted things or wrote things that spark feelings of anger or dismay or guilt or puzzlement, and I know that many of those feelings are due simply to the fact that I am bereaved, I am grieving. I am very sensitive to things; not all the time, but sometimes. But I feel these things, I take them in, deep inside, and I wonder what people are thinking when they say them or write them down. And I know that mostly people don’t know exactly what to say, and mostly it’s my reception or my impression at the time that brings on a negative feeling or a bristling, but still, I can’t take full responsibility for others’ words: my grief colors everything in my life now, but I don’t control what others do or say. People can know that there are things that shouldn't be said, like, “You’re doing so well after just a month”, or “He is in a better place”, or “God has a plan”, or “He was just too good for this world” or “God needed another little angel”. Unless you know me very well and can have a conversation or a discussion with me about your own thoughts and feelings on these things, try not to just cast about for things to say because you don’t know what else to say. Consider carefully what you say to us. Not just Jamie and me, but any parent who has lost a child. Really, any person who has lost a loved one. To us, these are not just passing comments. We think about everything. I search and search for meaning, for an answer to the “Why?” that screams through my mind. I spent a great deal of time over the first four months or so after the diagnosis screaming it; asking other people, asking God, begging God, crying out “Why? Why?” and begging, crying for help, healing, miracles, answers to “Why”, much of the time wondering if Anybody was even listening or cared. The last two months I’ve said “Why” it in a quieter voice; still the question persists, now mostly in silence. But it’s still there, it will always be there, it’s just that the need to know “Why” right now doesn’t seem so urgent as before. There is nothing else the human mind can do but allow “Why” to rest, to seep below the surface; otherwise, it would make a person --- me, you, anyone --- crazy. The answer to the question isn’t going to come anyway. One day, when I can be with Theo again face to face, soul to soul, I will know and he and I will talk about it, but until then, I will have to endure the persistence of “Why?”
Lots of people think I am doing really well. I guess I do seem to be doing really well when people read what I write or see me day in, day out, working, shopping, conversing with people about things not having to do with Theo, not in tears, going about life, not in a psych ward someplace, laughing, not in a puddle on the floor. Maybe that people think I’m doing so well means that I am not grieving publicly enough, or deeply enough. It’s like feeling guilty for laughing about something. I laugh a lot, I’ve always laughed a lot, it’s one of my favorite things to do. I choose my friends largely on how much I laugh when I’m with them. Every person I love can make me laugh. But now, every single time I laugh, I think about how inappropriate it seems --- even though it isn’t --- or how I shouldn’t be laughing or cutting up or making jokes about anything. Even when I know that laughter is good for us. But my child is dead. My child is dead. My child is dead. Nothing should be funny. It feels unseemly or improper, out of place, wrong to laugh when my heart is so broken, when I have only lately buried my first and only child. I don’t know how I am supposed to be doing. And I know as I write that, the response is that I am not supposed to be doing any particular way. There is no right or wrong way to grieve, everybody goes through it differently. Even people who suffer the same loss go through it differently. It’s different for me than it is for Jamie, for my mother, for my father, for both my grandmothers, for Theo’s aunts and uncles, cousins, for other people who knew him and love him. I know all the “right” answers for these things, what I would tell someone else if they came to me for counseling or help. None of those things, the textbooks, the therapist’s responses really mean anything in the face of this. Maybe later they might, but even as I tell myself the right things, even as I put those to use in my life, knowing this is normal, knowing it’s okay to have conflicting feelings, knowing there is no schedule for grieving, no right or wrong way to go through it, none of these things feels really meaningful in the midst of pain. It’s a cumulative effect. I know that all the feelings and pain, the things I do and think and say, the comfort I take from others, the help the support, the anger and the resolving of that anger all are part of the process and later will serve to help me come through to the other side somewhere. But in the meantime, nobody else sees me when I am in a puddle on the floor. Nobody else sees me look at his pictures over and over throughout the course of a day, studying each little feature intently, his hair, the bend of his finger, the shape of his mouth, or at other times, just stealing quick glances. Nobody else sees me holding his little socks between my fingers, picking up a piece of clothing or a blanket and holding it to my nose, breathing in deeply to take in what might be left of his scent on the fabric. Nobody else sees or can know how often in the midst of meetings or conversations or other normal every day activities, I am thinking mostly of Theo. Nobody else knows that he is always in my mind, even when something else is going on; he is never away from my thoughts. Nobody else knows what it is like when I lay down to sleep and stare, wide awake at the darkened ceiling or at the empty bassinet still next to my bedside. Nobody else sees how hard it is for me to behave normally after running into a co-worker and her new baby, or while seeing babies in the store when I really want to just break down and cry. Nobody sees how hard it is to keep that inside. I know that it’s good to cry, to get it out; trust me, I cry a lot. I just prefer to do most of my crying alone. And I don’t like to lose it in the middle of a store or at work or other public places. Crying and sobbing and snotting all over the place are, I feel, personal things. Sometimes I cry with Jamie, on his shoulder, sometimes with a trusted friend, but for the most part, I cry when I’m alone. I feel that’s the best way to really get it out. Not having to worry about how the other person is feeling. Are they getting tired of it? Are they wondering when I’m going to stop, have they had enough? It’s just easier and better for me emotionally to get all my crying and sobbing out when I’m by myself.
Yes, I’m functioning pretty well. We both are. No, I’m not in a psych ward or having to take a bunch of “nerve tablets,” as my grandmother would say. Yes, I feel peaceful and even happy sometimes. As far as grief goes, we are both doing pretty well. We are working through it, doing our “grief work” pretty well. Neither of us is denying how terrible it all is, nor are we denying that there are still lots of good things about life. Each other, laughter, springtime, flowers, new things, plans, dreams. But I don’t want anybody under the impression that there is anything, anything, easy about any of this. And I don’t always do remarkably well. When I sit down to write these posts, I know I am writing for an audience. These posts are not just for me. If they were, they would be very different. I am writing to you, sharing our lives with you. When I sit down to write, I don't tell about every agonizing moment of knowing I will be forever in this life without my first and only and beloved child. Knowing always, every second, that he is dead of a terrible and extremely rare brain tumor that ate big holes in his little, perfect baby brain. A brain tumor that one in 30 million people gets. That's about 4 times the population of New York City. Or about the combined population of the states of Virginia, Florida, Mississippi, Idaho, Oregon and Washington. That's some of my bitterness coming out. The memories of our hospital time border on traumatic. When I look at the pictures we took in the hospital, I have trouble breathing, my chest hurts, my stomach feels knotted up, my eyes swim and my throat goes dry. I am not going to look at them again for a very long time, maybe ever. I took them thinking that one day I would show them to him. Show him what he went through because he would be too young to remember. Those memories sometimes replay over and over. Sometimes I will have a thought of Theo and something will trip in my brain and I will just start to cry. No trigger, no baby in a grocery store or work corridor, no picture, no poem or song, just a thought and then a flood of tears. That happened the other day when I was driving on the highway. I thought I would have to pull over, but I did okay. It went on until I got home and could cry on Jamie. I don’t write about every little thing that tears my heart out.
There are many things that feel nearly unbearable. This whole past 7 ½ months has been unbearable, but had to be borne. We had no choice but to bear it and we did it in the very best way that we could. We didn’t run away from it even when we wished we could. We didn’t abandon Theo or each other. We went through it. And it will be with us forever. I know that we spent in these last 10 months since his birth last May more time with Theo than some families spend with their children in whole lifetimes. Whole days and nights were spent just holding him, looking at him, talking to him, singing to him, breathing with him, devoted to him. I know that the time we had with him was sacred. I know that I was lucky. Lucky to be the mother of such an extraordinary, special baby boy. I know all parents think their babies are special, but Theo was truly extra special. I am not the only one who knows this is true. I may never know in all my living days why this happened to him, to us, but I will always grateful to have known him and loved him and cared for him. He touched people, not only through his story, but through his being. A friend of mine visited him in the hospital and told me how upon seeing him, she was overcome with an incredible sense of peace and well-being. Another friend who stayed with Theo for a few nights so we could sleep in our bed tells me of how she was different, how something inside her has been changed for having spent those nights with Theo. There was something about him. I will wish for him to be with me for the rest of my life. I may be doing well, but there will always, always be an empty place in my heart that longs to be filled with no one else but Theo. His love and his spirit will always be with me, in my heart and soul and all around me, but my arms will always long to hold his little warm body close and that longing will never go away.
I hope that none of this upsets anyone who as told me how well I am doing or who may have made any comment that you think might have bothered me. It isn't about you at all. If you didn't say anything at all, I would feel abandoned and as though nobody cared. I just feel the need to explain all the facets of this process. To be honest about how I feel, how things are for me, for us as a family. I just wanted share some of these things. And I can't do that without talking about the hard and sad and bitter things. It has been, at times, harder now, a month and ten days later, than it was in the very beginning, right after his death.
Grief really is, just like all the books say, like waves in the ocean. The waves come and go, moving in and receding, high and low tides, sometimes smooth and calm, sometimes rough and choppy. And when you get hit by a wave, there is really nothing you can do but allow it to take you with it until it is over. If you struggle or fight it, it only makes things worse. It might be a little wave that just kind of knocks you off balance a bit, maybe you fall down and scrape your knee on a sharp piece of shell or this time, it might be a really big wave coming up fast, out of nowhere, crashing down on you, knocking you sideways and under. You might feel scared, or on the edge of panic, totally at the mercy of something much bigger and powerful than yourself. You might feel like you're drowning, like you can't breathe. Rolling over and over, seeing the light above, then dark murkiness, being pummelled and tossed about, maybe bruised and disoriented, until you are left to dry on the sand. The waves of grief are just like that; and as unpredictable, except in that you know that the waves will come, just not how or when or whether they might be calm or rough. But if you try to float with them, relax as much as you can and trust that you can float, it is a little easier.
Today we recieved several more cards from Noah's Children acknowledging those who have given donations in Theo's memory. Thank you so much for your kindness and generosity. And thank you again to everyone who has been so caring and kind to us. We really appreciate your love and support. I know I say that a lot, but not enough. We are very grateful to you all.
Love,
Karla
I've been hearing from a lot of people that I am doing really well. So many people ask, “How are you?” and I can’t tell you how difficult it is to answer that question. Even when I know people are asking because it's a social thing and the expected answer is, "fine" or "good, how are you?". I usually just say, "I'm doing ok". I think I am doing ok. But it isn’t that simple. I frequently hear, “You seem to be doing really well” or, “You look great” or, “You are such a strong person”. These comments set off strange feelings. Sometimes, I have a lot of mixed feelings about everybody thinking I’m doing so well. Sometimes I feel as if people are surprised, that the expectation is that I should be devastated, barely able to function, with swollen eyes, tear-streaked face, glazed eyes. As if I should be commended for doing so well and it bothers me sometimes. I know if nobody asked me how I am feeling or how I am doing, I would be upset and feel that nobody cares. I don’t want anybody thinking that I’m some poster-mom for strength in a tragedy or an example how to do well while grieving. And I would never want anybody else going through this to get the impression that it's been easy. I'm not always doing so great. I cry a lot. I get angry. I still feel shards of bitterness. People still make inappropriate comments about the afterlife and Theo’s new state of being and Universal plans.
There are certain things that people should not say to parents who have lost a child. Especially when people don’t know the parents all that well. My baby is not in a better place. God does not need another angel. I do believe that Theo is watching over us, that he sees and feels us, and that he is helping me in many ways, but I don't for one second believe that he is dead because "God needed another angel". People tell me I can have another baby. Some people who bring up new babies (usually people bring it up more with me than with Jamie, but it happens to him, too) ask whether we will have another baby or if we want another baby or tell me (or him) that we should have another baby. Things like, “You’re young, you can have another baby.” Nobody tells a widow she can get another husband; or an amputee that he can get another arm; or a brain injured person she can get another brain. No new baby could ever fill the empty place that reminds me near constantly that my Theo is gone and I can never again hold him, never coo to him, never smell his scent again. Sometimes asking whether we plan to have more children might be appropriate, but sometimes not, and so much depends on how it is said. Another hurtful thing is the "he is in a better place" comment. No parent who has lost a child, even if they comfort themselves with the thought that their baby is somewhere safe, warm, comfortable and happy, really feels there is a better place than in the loving embrace of mama and daddy. I am so very glad that he is no longer in any pain, but I don't think he is in a better place. A different place, a good place, but not better. Sometimes I wish people would refrain from telling us that “God has a plan.” This might make some people feel better, and may even be true; but most of us who have lost our children don’t care that God has a plan,even if we believe there is a plan. There very well may be a plan, but we don’t much care for it. Or when people say things like, “he was too good for this Earth.” That bothers me. He was goodness itself, and would’ve done Earth a world of good had he been able to stay. I know he would have. When our child is terminally ill, don’t tell us things like “your doubt may be keeping your son from being healed.” I shouldn’t even have to explain the reasons behind that one.
I know that people who say these things are trying to be helpful. I don't want to hurt anybody's feelings or alienate anybody or sound unappreciative. I appreciate the gesture, the attempt. I know that I have put our lives out on display by writing these posts and allowing hundreds, maybe thousands of others inside our journey. I know that by doing that, I am inviting comments and making it possible for people who don't know us to know us through these words. And I am glad that I have done it. But I would like to ask that people please think about what is said to a parent who has a terminally ill child or whose child has died. Say, “I am so sorry”, admit that it is awful and sad and that you may not know what to say. We know how terrible it is, talking about it doesn't make it worse, it makes us feel not so alone. Don't be afraid to mention the child's name, we are already thinking of him and we like to hear other people talk about him or remember him. Let us know you care, let us know that you are there for us, that you’re thinking of us, that we are loved. That we are in your thoughts, your prayers, your meditations.
Sometimes when people talk or write about how well I’m doing, I can’t help but feel disturbed. I know people mean well, but sometimes I just feel that saying how great I seem to be doing minimizes the gravity of the situation--not that anyone thinks that, it's only how I feel. I know no one thinks that. Or I feel guilt over the thought that so many people have the impression that I’m doing so well. And I know there are a lot of people who think I am doing really well. And I guess in the whole scheme of things, I am doing well, I know that I am doing better than a lot of people would be. But I also think it’s normal to go through feelings like these. I think about and talk about how normal all the things I go through are. Telling myself, this is normal to feel this way, or that way or to feel angry or bitter or to have good feelings. Several times people have said things or posted things or wrote things that spark feelings of anger or dismay or guilt or puzzlement, and I know that many of those feelings are due simply to the fact that I am bereaved, I am grieving. I am very sensitive to things; not all the time, but sometimes. But I feel these things, I take them in, deep inside, and I wonder what people are thinking when they say them or write them down. And I know that mostly people don’t know exactly what to say, and mostly it’s my reception or my impression at the time that brings on a negative feeling or a bristling, but still, I can’t take full responsibility for others’ words: my grief colors everything in my life now, but I don’t control what others do or say. People can know that there are things that shouldn't be said, like, “You’re doing so well after just a month”, or “He is in a better place”, or “God has a plan”, or “He was just too good for this world” or “God needed another little angel”. Unless you know me very well and can have a conversation or a discussion with me about your own thoughts and feelings on these things, try not to just cast about for things to say because you don’t know what else to say. Consider carefully what you say to us. Not just Jamie and me, but any parent who has lost a child. Really, any person who has lost a loved one. To us, these are not just passing comments. We think about everything. I search and search for meaning, for an answer to the “Why?” that screams through my mind. I spent a great deal of time over the first four months or so after the diagnosis screaming it; asking other people, asking God, begging God, crying out “Why? Why?” and begging, crying for help, healing, miracles, answers to “Why”, much of the time wondering if Anybody was even listening or cared. The last two months I’ve said “Why” it in a quieter voice; still the question persists, now mostly in silence. But it’s still there, it will always be there, it’s just that the need to know “Why” right now doesn’t seem so urgent as before. There is nothing else the human mind can do but allow “Why” to rest, to seep below the surface; otherwise, it would make a person --- me, you, anyone --- crazy. The answer to the question isn’t going to come anyway. One day, when I can be with Theo again face to face, soul to soul, I will know and he and I will talk about it, but until then, I will have to endure the persistence of “Why?”
Lots of people think I am doing really well. I guess I do seem to be doing really well when people read what I write or see me day in, day out, working, shopping, conversing with people about things not having to do with Theo, not in tears, going about life, not in a psych ward someplace, laughing, not in a puddle on the floor. Maybe that people think I’m doing so well means that I am not grieving publicly enough, or deeply enough. It’s like feeling guilty for laughing about something. I laugh a lot, I’ve always laughed a lot, it’s one of my favorite things to do. I choose my friends largely on how much I laugh when I’m with them. Every person I love can make me laugh. But now, every single time I laugh, I think about how inappropriate it seems --- even though it isn’t --- or how I shouldn’t be laughing or cutting up or making jokes about anything. Even when I know that laughter is good for us. But my child is dead. My child is dead. My child is dead. Nothing should be funny. It feels unseemly or improper, out of place, wrong to laugh when my heart is so broken, when I have only lately buried my first and only child. I don’t know how I am supposed to be doing. And I know as I write that, the response is that I am not supposed to be doing any particular way. There is no right or wrong way to grieve, everybody goes through it differently. Even people who suffer the same loss go through it differently. It’s different for me than it is for Jamie, for my mother, for my father, for both my grandmothers, for Theo’s aunts and uncles, cousins, for other people who knew him and love him. I know all the “right” answers for these things, what I would tell someone else if they came to me for counseling or help. None of those things, the textbooks, the therapist’s responses really mean anything in the face of this. Maybe later they might, but even as I tell myself the right things, even as I put those to use in my life, knowing this is normal, knowing it’s okay to have conflicting feelings, knowing there is no schedule for grieving, no right or wrong way to go through it, none of these things feels really meaningful in the midst of pain. It’s a cumulative effect. I know that all the feelings and pain, the things I do and think and say, the comfort I take from others, the help the support, the anger and the resolving of that anger all are part of the process and later will serve to help me come through to the other side somewhere. But in the meantime, nobody else sees me when I am in a puddle on the floor. Nobody else sees me look at his pictures over and over throughout the course of a day, studying each little feature intently, his hair, the bend of his finger, the shape of his mouth, or at other times, just stealing quick glances. Nobody else sees me holding his little socks between my fingers, picking up a piece of clothing or a blanket and holding it to my nose, breathing in deeply to take in what might be left of his scent on the fabric. Nobody else sees or can know how often in the midst of meetings or conversations or other normal every day activities, I am thinking mostly of Theo. Nobody else knows that he is always in my mind, even when something else is going on; he is never away from my thoughts. Nobody else knows what it is like when I lay down to sleep and stare, wide awake at the darkened ceiling or at the empty bassinet still next to my bedside. Nobody else sees how hard it is for me to behave normally after running into a co-worker and her new baby, or while seeing babies in the store when I really want to just break down and cry. Nobody sees how hard it is to keep that inside. I know that it’s good to cry, to get it out; trust me, I cry a lot. I just prefer to do most of my crying alone. And I don’t like to lose it in the middle of a store or at work or other public places. Crying and sobbing and snotting all over the place are, I feel, personal things. Sometimes I cry with Jamie, on his shoulder, sometimes with a trusted friend, but for the most part, I cry when I’m alone. I feel that’s the best way to really get it out. Not having to worry about how the other person is feeling. Are they getting tired of it? Are they wondering when I’m going to stop, have they had enough? It’s just easier and better for me emotionally to get all my crying and sobbing out when I’m by myself.
Yes, I’m functioning pretty well. We both are. No, I’m not in a psych ward or having to take a bunch of “nerve tablets,” as my grandmother would say. Yes, I feel peaceful and even happy sometimes. As far as grief goes, we are both doing pretty well. We are working through it, doing our “grief work” pretty well. Neither of us is denying how terrible it all is, nor are we denying that there are still lots of good things about life. Each other, laughter, springtime, flowers, new things, plans, dreams. But I don’t want anybody under the impression that there is anything, anything, easy about any of this. And I don’t always do remarkably well. When I sit down to write these posts, I know I am writing for an audience. These posts are not just for me. If they were, they would be very different. I am writing to you, sharing our lives with you. When I sit down to write, I don't tell about every agonizing moment of knowing I will be forever in this life without my first and only and beloved child. Knowing always, every second, that he is dead of a terrible and extremely rare brain tumor that ate big holes in his little, perfect baby brain. A brain tumor that one in 30 million people gets. That's about 4 times the population of New York City. Or about the combined population of the states of Virginia, Florida, Mississippi, Idaho, Oregon and Washington. That's some of my bitterness coming out. The memories of our hospital time border on traumatic. When I look at the pictures we took in the hospital, I have trouble breathing, my chest hurts, my stomach feels knotted up, my eyes swim and my throat goes dry. I am not going to look at them again for a very long time, maybe ever. I took them thinking that one day I would show them to him. Show him what he went through because he would be too young to remember. Those memories sometimes replay over and over. Sometimes I will have a thought of Theo and something will trip in my brain and I will just start to cry. No trigger, no baby in a grocery store or work corridor, no picture, no poem or song, just a thought and then a flood of tears. That happened the other day when I was driving on the highway. I thought I would have to pull over, but I did okay. It went on until I got home and could cry on Jamie. I don’t write about every little thing that tears my heart out.
There are many things that feel nearly unbearable. This whole past 7 ½ months has been unbearable, but had to be borne. We had no choice but to bear it and we did it in the very best way that we could. We didn’t run away from it even when we wished we could. We didn’t abandon Theo or each other. We went through it. And it will be with us forever. I know that we spent in these last 10 months since his birth last May more time with Theo than some families spend with their children in whole lifetimes. Whole days and nights were spent just holding him, looking at him, talking to him, singing to him, breathing with him, devoted to him. I know that the time we had with him was sacred. I know that I was lucky. Lucky to be the mother of such an extraordinary, special baby boy. I know all parents think their babies are special, but Theo was truly extra special. I am not the only one who knows this is true. I may never know in all my living days why this happened to him, to us, but I will always grateful to have known him and loved him and cared for him. He touched people, not only through his story, but through his being. A friend of mine visited him in the hospital and told me how upon seeing him, she was overcome with an incredible sense of peace and well-being. Another friend who stayed with Theo for a few nights so we could sleep in our bed tells me of how she was different, how something inside her has been changed for having spent those nights with Theo. There was something about him. I will wish for him to be with me for the rest of my life. I may be doing well, but there will always, always be an empty place in my heart that longs to be filled with no one else but Theo. His love and his spirit will always be with me, in my heart and soul and all around me, but my arms will always long to hold his little warm body close and that longing will never go away.
I hope that none of this upsets anyone who as told me how well I am doing or who may have made any comment that you think might have bothered me. It isn't about you at all. If you didn't say anything at all, I would feel abandoned and as though nobody cared. I just feel the need to explain all the facets of this process. To be honest about how I feel, how things are for me, for us as a family. I just wanted share some of these things. And I can't do that without talking about the hard and sad and bitter things. It has been, at times, harder now, a month and ten days later, than it was in the very beginning, right after his death.
Grief really is, just like all the books say, like waves in the ocean. The waves come and go, moving in and receding, high and low tides, sometimes smooth and calm, sometimes rough and choppy. And when you get hit by a wave, there is really nothing you can do but allow it to take you with it until it is over. If you struggle or fight it, it only makes things worse. It might be a little wave that just kind of knocks you off balance a bit, maybe you fall down and scrape your knee on a sharp piece of shell or this time, it might be a really big wave coming up fast, out of nowhere, crashing down on you, knocking you sideways and under. You might feel scared, or on the edge of panic, totally at the mercy of something much bigger and powerful than yourself. You might feel like you're drowning, like you can't breathe. Rolling over and over, seeing the light above, then dark murkiness, being pummelled and tossed about, maybe bruised and disoriented, until you are left to dry on the sand. The waves of grief are just like that; and as unpredictable, except in that you know that the waves will come, just not how or when or whether they might be calm or rough. But if you try to float with them, relax as much as you can and trust that you can float, it is a little easier.
Today we recieved several more cards from Noah's Children acknowledging those who have given donations in Theo's memory. Thank you so much for your kindness and generosity. And thank you again to everyone who has been so caring and kind to us. We really appreciate your love and support. I know I say that a lot, but not enough. We are very grateful to you all.
Love,
Karla
Tuesday, March 21, 2006
3/21/2006 Springtime
Just to let everyone know, I set the pages to show only two posts per page to avoid problems with the settings. To see any previous posts, go to the 'previous posts' section and click on the title of the post, or go to the monthly archives. Also, I believe the comments are enabled now, so you can post comments but feel free to send an email to babythelonius@yahoo.com if you like or if you have problems with the comment link.
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Yesterday was the Spring Equinox and the one month anniversary of Theo's death. It seems kind of appropriate that Spring came on that day. On the day of the equinox, the earth experiences equal times of daylight and dark. After that we begin to notice more and more as the season goes on longer periods of light each day. It kind of feels like that for me right now. Periods of darkness, hurt and grieving feel a little more balanced by times of lightness. A little more laughter, a little less pain, a little easier to remember him and not hurt every time. Hopefully the lightness in my heart will continue to grow with the light outside. I have tried really hard, throughout his illness and his death and now through the grieving and bereavement, to be as open as I can, to allow myself to continue to be open to my feelings and to grow, to not shrivel up or stay tightly closed. I only hope that as the flowers and plants grow and bloom, I can as well. But, then again, even when spring comes on the calendar and the light stays a little longer, we still have periods of cold and frost and rain and snow, especially early on in the season. It's like that outside today. Cold and dark.
One of my coworkers brought in her newborn baby today and I didn't expect to walk around the corner and see a brand new baby. It was really, really hard for me. I had to work really hard not to fall apart in the meeting I was sitting in after I ran (almost literally) into Jill and her new baby boy. He looks nothing like Theo, but it was just the memory of him that little, in my arms, sleeping, nursing. After that I've just been nearly in tears all day.
I just miss him so much. We both miss him so much. I told Jamie yesterday that it feels like he is still here. It's hard to really explain. I've mentioned the feeling to other people occasionally and others have thought I mean that sometimes I forget that he is gone. That isn't it at all. I never forget that he is gone. It's the first thing I think of every single morning. Most of the time I open my eyes from sleep and have that brief moment when I'm thinking of nothing really, and then the thought comes floating up -- "Theo is dead" -- and the heaviness settles around my heart. Or sometimes, more rarely, the thought doesn't float, but crashes in, mean and shocking. Rushing in like freezing air or having the breath knocked out of me. Sometimes it wakes me up in that way and it feels like a shock. But usually the thought just kind of floats in, reminding me, as if I need a reminder, "Psst...hey, remember...your baby is dead...don't forget..."
So forgetting for a moment that he is gone is not what I mean by saying that it feels like he is still here. I mean it feels like he is still here. I can feel him around me or nearby. Not in a "woo-woo" (as my friend Lenore says), ooh I can feeeel him all around me kind of way, just a matter of fact, Theo is here way. As is maybe he is asleep in the next room or just downstairs. Like when somebody comes into a room, and something, the energy in the room, your perception of the presence of another person, changes the way the space feels. Parents, lovers, close friends have a certain knowing about the particular kind of feeling that surrounds the one they love and I can feel that "Theo-ness" around me and in the space where I am. It isn't something that comes suddenly, like all of sudden noticing that he's here or anything like that, more of an overall perception, a feeling that dawns on me slowly at times. I can't really explain it. But Jamie knew exactly what I meant. It feels like he is still here. And somehow, I think he is. But it still isn't the same as having him, nothing at all like having him here.
I was reading a passage from the Bhagavad Gita about the True Self, that Self that never dies, which says:
The Self dwells in the house of the body,
Which passes through childhood, youth and old age.
So passes the Self at the time of death into another form.
The wise know this truth...
Not pierced by arrows, nor burnt by fire,
Affected by neither water nor wind,
The Self is not a physical creature.
Not wounded, not burnt, not wetted, not dried,
The Self is ever and everywhere,
Immovable and everlasting.
There are some who have realized the Self
In all its wonder. Others can speak of it as wonderful.
But there are many who don't understand even when they hear.
Deathless is the Self in every creature.
Know this truth,
and leave all sorrow behind.
I have been thinking a lot about this passage. If I believe what it says to be true, and I know there is no death, then why have do I have such sorrow? Does it mean that I don't truly believe it? I thought long and hard about that. But I do believe it. Maybe it's that I believe, but don't know. But that isn't the case either, because I know without any doubt that Theo exists, Theo's Self, his true essence, is still here, is everywhere, is with me and in me and all around me. I know he sees me and that he feels me and that sometime, I will see him and be with him. I will be able to interact with him and we will talk about all this. But in the meantime, I have no choice but to be here without him in physical form. I hurt because, even if I know that he has not "died", even if I know that the Self, in Theo, in me, in you, in all of us is deathless, he is still not here with me and that is what hurts so much. So I guess I am just selfish and attached to wanting my baby here in physical form and that's just the way it is. I can't imagine being anywhere near wise and enlightened enough that I will not miss having the physical form of my baby here with me. Maybe one day I won't feel so much sorrow, maybe more and more the light will outbalance the dark, but for now, even knowing that there is truly no death, doesn't keep the pain from my heart.
If anyone has tried to comment and cannot, I am sorry. There is something wrong with the system, and probably too with the changes I have made in trying fix the problem myself. I don't know if it will ever be fixed so I opened an email account where comments can be sent. Feel free to send email to babythelonius@yahoo.com instead of posting a comment. Hopefully it will be fixed soon.
I will post reminders about the memorial service periodically. We continue to be thankful for all the support from so many people. I am taking all the stuffed animals we have recieved to the hospital this coming Friday. I also want to thank Jennifer D'Surney Emory who brought many, many more animals to add to the collection. Her baby girl christening was held the day of Theo's funeral and all who attended Campbell's christening brought an animal for Theo. Thank you to all of Jennifer's friends and family for that gesture.
I will continue to post to let you know how we are.
Love,
Karla
~~~~~~~~~~~~~~~~
Yesterday was the Spring Equinox and the one month anniversary of Theo's death. It seems kind of appropriate that Spring came on that day. On the day of the equinox, the earth experiences equal times of daylight and dark. After that we begin to notice more and more as the season goes on longer periods of light each day. It kind of feels like that for me right now. Periods of darkness, hurt and grieving feel a little more balanced by times of lightness. A little more laughter, a little less pain, a little easier to remember him and not hurt every time. Hopefully the lightness in my heart will continue to grow with the light outside. I have tried really hard, throughout his illness and his death and now through the grieving and bereavement, to be as open as I can, to allow myself to continue to be open to my feelings and to grow, to not shrivel up or stay tightly closed. I only hope that as the flowers and plants grow and bloom, I can as well. But, then again, even when spring comes on the calendar and the light stays a little longer, we still have periods of cold and frost and rain and snow, especially early on in the season. It's like that outside today. Cold and dark.
One of my coworkers brought in her newborn baby today and I didn't expect to walk around the corner and see a brand new baby. It was really, really hard for me. I had to work really hard not to fall apart in the meeting I was sitting in after I ran (almost literally) into Jill and her new baby boy. He looks nothing like Theo, but it was just the memory of him that little, in my arms, sleeping, nursing. After that I've just been nearly in tears all day.
I just miss him so much. We both miss him so much. I told Jamie yesterday that it feels like he is still here. It's hard to really explain. I've mentioned the feeling to other people occasionally and others have thought I mean that sometimes I forget that he is gone. That isn't it at all. I never forget that he is gone. It's the first thing I think of every single morning. Most of the time I open my eyes from sleep and have that brief moment when I'm thinking of nothing really, and then the thought comes floating up -- "Theo is dead" -- and the heaviness settles around my heart. Or sometimes, more rarely, the thought doesn't float, but crashes in, mean and shocking. Rushing in like freezing air or having the breath knocked out of me. Sometimes it wakes me up in that way and it feels like a shock. But usually the thought just kind of floats in, reminding me, as if I need a reminder, "Psst...hey, remember...your baby is dead...don't forget..."
So forgetting for a moment that he is gone is not what I mean by saying that it feels like he is still here. I mean it feels like he is still here. I can feel him around me or nearby. Not in a "woo-woo" (as my friend Lenore says), ooh I can feeeel him all around me kind of way, just a matter of fact, Theo is here way. As is maybe he is asleep in the next room or just downstairs. Like when somebody comes into a room, and something, the energy in the room, your perception of the presence of another person, changes the way the space feels. Parents, lovers, close friends have a certain knowing about the particular kind of feeling that surrounds the one they love and I can feel that "Theo-ness" around me and in the space where I am. It isn't something that comes suddenly, like all of sudden noticing that he's here or anything like that, more of an overall perception, a feeling that dawns on me slowly at times. I can't really explain it. But Jamie knew exactly what I meant. It feels like he is still here. And somehow, I think he is. But it still isn't the same as having him, nothing at all like having him here.
I was reading a passage from the Bhagavad Gita about the True Self, that Self that never dies, which says:
The Self dwells in the house of the body,
Which passes through childhood, youth and old age.
So passes the Self at the time of death into another form.
The wise know this truth...
Not pierced by arrows, nor burnt by fire,
Affected by neither water nor wind,
The Self is not a physical creature.
Not wounded, not burnt, not wetted, not dried,
The Self is ever and everywhere,
Immovable and everlasting.
There are some who have realized the Self
In all its wonder. Others can speak of it as wonderful.
But there are many who don't understand even when they hear.
Deathless is the Self in every creature.
Know this truth,
and leave all sorrow behind.
I have been thinking a lot about this passage. If I believe what it says to be true, and I know there is no death, then why have do I have such sorrow? Does it mean that I don't truly believe it? I thought long and hard about that. But I do believe it. Maybe it's that I believe, but don't know. But that isn't the case either, because I know without any doubt that Theo exists, Theo's Self, his true essence, is still here, is everywhere, is with me and in me and all around me. I know he sees me and that he feels me and that sometime, I will see him and be with him. I will be able to interact with him and we will talk about all this. But in the meantime, I have no choice but to be here without him in physical form. I hurt because, even if I know that he has not "died", even if I know that the Self, in Theo, in me, in you, in all of us is deathless, he is still not here with me and that is what hurts so much. So I guess I am just selfish and attached to wanting my baby here in physical form and that's just the way it is. I can't imagine being anywhere near wise and enlightened enough that I will not miss having the physical form of my baby here with me. Maybe one day I won't feel so much sorrow, maybe more and more the light will outbalance the dark, but for now, even knowing that there is truly no death, doesn't keep the pain from my heart.
If anyone has tried to comment and cannot, I am sorry. There is something wrong with the system, and probably too with the changes I have made in trying fix the problem myself. I don't know if it will ever be fixed so I opened an email account where comments can be sent. Feel free to send email to babythelonius@yahoo.com instead of posting a comment. Hopefully it will be fixed soon.
I will post reminders about the memorial service periodically. We continue to be thankful for all the support from so many people. I am taking all the stuffed animals we have recieved to the hospital this coming Friday. I also want to thank Jennifer D'Surney Emory who brought many, many more animals to add to the collection. Her baby girl christening was held the day of Theo's funeral and all who attended Campbell's christening brought an animal for Theo. Thank you to all of Jennifer's friends and family for that gesture.
I will continue to post to let you know how we are.
Love,
Karla
Wednesday, March 15, 2006
Theo's Memorial Service
This is the photograph of Theo that I was talking about in when I wrote about the one particular picture that made me cry every time I looked at it.
It still does sometime. I love this picture. It was taken while he was sleeping a few weeks before he died. We used to love to see him smiling in his sleep. To us it meant that he was happy sometimes. I know that he knew all the time how much we love him, but I worry about how much pain he was in, how uncomfortable he might have been. Because of the damage to his brain--the "neurological devastation"--he was unable to make facial expressions, be socially engaged, interact with us like any other healthy-brained 9 month old. But he was able to smile when he was sleeping. He only did it occasionally but every time we saw his sweet face transformed by his smile, we felt as though we were given a small but precious gift. When he smiled in his sleep, he looked like the Theo we knew before the brain tumor and it was so good to see a tiny glimpse of him again and to know that at least in his dreams-- and he was dreaming, his little eyes moving in quick fluttery REM flickers underneath his lids, dreaming and smiling--he was without pain, without a tumor. He was happy, maybe he was even laughing inside his sleeping, dreaming mind. We used to wonder to each other, "What do think he is dreaming about?" Jamie always said he was dreaming of me. I don't know. I hope he was dreaming of us, of playing, of eating, of flowers and sunshine and happy things.
Next Monday he will have been gone one month. Things are still the same for us, up and down. We miss him terribly. We are still recieving cards in the mail almost daily, and I so appreciate the comforting and heartfelt words from so many wonderful people. Often, bereaved parents recieve a lot of support initially, but say that people tend to forget after a few weeks that the pain for us is just as fresh. The whole terrible event seems to have just occurred. It is good to come home to a card from a caring friends, or a small package from a family member, a bouquet of flowers unexpectedly dropped off, a note telling us how Theo touched a life. All of our wonderful neighbors gave us a card from each person on our block with a gift certificate to an area restaurant they know we like. Thanks so much to everyone for remembering to remember. No matter how small you think a gesture might be, it does not go unappreciated or uneeded. None of your acts of love and kindness are taken for granted. All are significant and are like a soothing balm to our hurt. All the gifts and donations to us and in Theo's name are so appreciated. There is comfort in knowing that so many people hold us in their hearts and thoughts and that Theo meant so much to so many people.
I have many moments throughout the day when I feel so sad and broken hearted, missing him, missing what would have been. Thinking of a life with no Theo is so lonely and sad. In those moments, I can feel the grief creeping in, slowly squeezing my heart and my belly into hard knots. Making me feel anxious and sick to my stomach. Sometimes I indulge in those feelings, taking my mind into the pain, feeling it push through me. If I don't, it only gets worse the next time. Other times the pain of missing him hits me hard, quickly, unexpectedly. Hearing a song we listened to with him but didn't remember was on the cd changer, or hearing a song I'd never heard before about lost love and heartbreak and thinking of it in a Theo context. One of the books I have on my nightstand right now is William Goldman's The Princess Bride (you might know it as the really awesome movie by the same name), and there is a part where the narrator is giving details of the life of one of the characters who happens to be a giant. In this part of the book he compares the weight loss and gain of regular newborn humans to that of the giant babies. I was reading, and all of a sudden I was reminded of Theo's weight as a newborn, his first few days of normal wight loss, his on-schedule weight gain, and the thought of it, of Theo, just made me burst into tears and I cried and sobbed for at least 10 minutes just from reading a fairly inconsequential passage in a mostly lighthearted storybook. Up and down. And like so many parents who lose their children, we laugh, we find things funny; it feels strange to do so, but it also feels good. I know Theo likes it when we are happy. He wants us to be happy. I do know that and I know that he loves us and that he wants us to know.
The date for the memorial service is set for Theo's first birthday, Friday May 26, 2006,
at 7:00 p.m. in the First Unitarian Church at 1000 Blanton Avenue in Richmond.
This is the church next to the Carillon Bell Tower near Dogwood Dell and Maymont Park.
After the service we will have a birthday cake for Theo and some light refreshments. We invite everyone to please come and join us in remembering and celebrating his life. We look forward to sharing this time with all our Richmond family and friends as well as all of you who have been touched by his life through my writing about our journey and who wish to share in his memory. We hope to meet some of the people who have come to know us through his story. Many people have emailed that they wish to come to his service having only known us through his story here. Everyone is welcome.
Love,
Karla
It still does sometime. I love this picture. It was taken while he was sleeping a few weeks before he died. We used to love to see him smiling in his sleep. To us it meant that he was happy sometimes. I know that he knew all the time how much we love him, but I worry about how much pain he was in, how uncomfortable he might have been. Because of the damage to his brain--the "neurological devastation"--he was unable to make facial expressions, be socially engaged, interact with us like any other healthy-brained 9 month old. But he was able to smile when he was sleeping. He only did it occasionally but every time we saw his sweet face transformed by his smile, we felt as though we were given a small but precious gift. When he smiled in his sleep, he looked like the Theo we knew before the brain tumor and it was so good to see a tiny glimpse of him again and to know that at least in his dreams-- and he was dreaming, his little eyes moving in quick fluttery REM flickers underneath his lids, dreaming and smiling--he was without pain, without a tumor. He was happy, maybe he was even laughing inside his sleeping, dreaming mind. We used to wonder to each other, "What do think he is dreaming about?" Jamie always said he was dreaming of me. I don't know. I hope he was dreaming of us, of playing, of eating, of flowers and sunshine and happy things.Next Monday he will have been gone one month. Things are still the same for us, up and down. We miss him terribly. We are still recieving cards in the mail almost daily, and I so appreciate the comforting and heartfelt words from so many wonderful people. Often, bereaved parents recieve a lot of support initially, but say that people tend to forget after a few weeks that the pain for us is just as fresh. The whole terrible event seems to have just occurred. It is good to come home to a card from a caring friends, or a small package from a family member, a bouquet of flowers unexpectedly dropped off, a note telling us how Theo touched a life. All of our wonderful neighbors gave us a card from each person on our block with a gift certificate to an area restaurant they know we like. Thanks so much to everyone for remembering to remember. No matter how small you think a gesture might be, it does not go unappreciated or uneeded. None of your acts of love and kindness are taken for granted. All are significant and are like a soothing balm to our hurt. All the gifts and donations to us and in Theo's name are so appreciated. There is comfort in knowing that so many people hold us in their hearts and thoughts and that Theo meant so much to so many people.
I have many moments throughout the day when I feel so sad and broken hearted, missing him, missing what would have been. Thinking of a life with no Theo is so lonely and sad. In those moments, I can feel the grief creeping in, slowly squeezing my heart and my belly into hard knots. Making me feel anxious and sick to my stomach. Sometimes I indulge in those feelings, taking my mind into the pain, feeling it push through me. If I don't, it only gets worse the next time. Other times the pain of missing him hits me hard, quickly, unexpectedly. Hearing a song we listened to with him but didn't remember was on the cd changer, or hearing a song I'd never heard before about lost love and heartbreak and thinking of it in a Theo context. One of the books I have on my nightstand right now is William Goldman's The Princess Bride (you might know it as the really awesome movie by the same name), and there is a part where the narrator is giving details of the life of one of the characters who happens to be a giant. In this part of the book he compares the weight loss and gain of regular newborn humans to that of the giant babies. I was reading, and all of a sudden I was reminded of Theo's weight as a newborn, his first few days of normal wight loss, his on-schedule weight gain, and the thought of it, of Theo, just made me burst into tears and I cried and sobbed for at least 10 minutes just from reading a fairly inconsequential passage in a mostly lighthearted storybook. Up and down. And like so many parents who lose their children, we laugh, we find things funny; it feels strange to do so, but it also feels good. I know Theo likes it when we are happy. He wants us to be happy. I do know that and I know that he loves us and that he wants us to know.
The date for the memorial service is set for Theo's first birthday, Friday May 26, 2006,
at 7:00 p.m. in the First Unitarian Church at 1000 Blanton Avenue in Richmond.
This is the church next to the Carillon Bell Tower near Dogwood Dell and Maymont Park.
After the service we will have a birthday cake for Theo and some light refreshments. We invite everyone to please come and join us in remembering and celebrating his life. We look forward to sharing this time with all our Richmond family and friends as well as all of you who have been touched by his life through my writing about our journey and who wish to share in his memory. We hope to meet some of the people who have come to know us through his story. Many people have emailed that they wish to come to his service having only known us through his story here. Everyone is welcome.
Love,
Karla
Friday, March 10, 2006
Thelonius Dragonfly
This dragonfly was designed by my friend Lisa Marshall. This one was a computer version she sent me that I just thought was beautiful. I had enlarged and framed it and took it with us to set up at the funeral home with his pictures. When Lisa came for the visitation, she brought the original watercolor (which I had not seen until then) in blues and purples. She had it framed and matted with the dragonfly and waterbug story that we set up on an easel next to the guest book.
Thank you to Lisa for this beautiful tribute to Theo. (Click on the picture to enlarge it)
Waterbugs and Dragonflies
Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in a while one of their colony seemed to lose interest in going about with its friends. Clinging to the stem of a pond lily, it gradually moved out of sight and was seen no more.
"Look!" said one of the water bugs to another. "One of our colony is climbing up the lily stalk. Where do you suppose she is going?" Up, up, up it went slowly. Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn't return. "That's funny!" said one water bug to another. "Wasn't she happy here?" asked a second water bug. "Where do you suppose she went?" wondered a third. No one had an answer. They were greatly puzzled. Finally one of the water bugs, a leader in the colony, gathered its friends together. "I have an idea. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why." "We promise," they said solemnly.
One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up he went. Before he knew what was happening, he had broken through the surface of the water, and fallen onto the broad, green lily pad above. When he awoke, he looked about with surprise. He couldn't believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings. The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above the water. He had become a dragonfly.
Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by, the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were, scurrying about, just as he had been doing some time before. Then the dragonfly remembered the promise: "The next one of us who climbs up the lily stalk will come back and tell where he or she went and why."
Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water. "I can't return!" he said in dismay. "At least I tried, but I can't keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I'll just have to wait until they become dragonflies too. Then they'll understand what happened to me, and where I went.”
And the dragonfly winged off happily into its wonderful new world of sun and air.
Doris Stickney (1982)
Tuesday, March 07, 2006
03/07/2005
I went back to work Monday. It wasn't as difficult as I thought it would be. I have a million things to do it seems--I don't know how I will get everything done--but I expected everyone to be talking to me about Theo, offering condolences, discussing things with me and I didn't want that. And nobody did. A few people just hugged me or said, "Welcome back" or took my hand or patted my back. It was nice. I just can't do a lot of talking about Theo at work, or I won't be able to focus or keep from crying. And I don't want to do that there.
I went yesterday evening to get my taxes done and the lady who does my taxes, who I see once a year, said, "how was your year" and I just couldn't keep from crying. I said, "The last time I was here, I was pregnant". And told the shortest possible version of the story. She was shocked. I guess it isn't what you expect to hear every day. But she was sweet and very helpful.
I am hoping to hear tomorrow or the next day from the lady in charge of the space I want to use for Theo's memorial so that I can post more details and make plans for his service. Keep checking. I will post as soon as I hear with the location, date and time.
We continue to get cards daily and they are so appreciated. Also, we have recieved nearly one hundred stuffed animals (not counting the small ones like beany babies, of which we have about 40) and I know some friends of ours have more animals to bring over. I am planning to make little cards to tie to their arms or around their necks that say something like, "This animal is given with love to you from Baby Theo". I want to keep a few to have at the memorial, but we plan to take a bunch to the hospital in the next week or so.
It's strange, in some ways it feels like everything happened so long ago. I can hardly belive it's only been two weeks, and in other ways it seems just a few seconds ago that he was here with us. All of his things still around me, everything the same, except he is not here. I can close my eyes and breathe in and bring his sweet face to my mind so clearly. I remember vividly the feeling of kissing his soft skin, his little feet, his chubby thighs. Every time I changed his diaper I kissed his legs and his feet, his toes and his knees. I remember the smell of his hair, breathing in his breath with my own. We watched a show the other night about quantum physics, our perceptions of "reality" etc., and in one part they talked about a study done with brain scans where a person was shown something, a candle burning, an event taking place, whatever, and certain areas of the brain lit up on the scan showing certain kinds of brain activity when the event or object was percieved. For the next scan, the subject was asked to simply recall seeing the same exact thing with the eyes closed and, wouldn't you know, the very same areas of the brain lit up, indicating that the brain doesn't know the difference between what it actually "sees" and what it remembers or visualizes seeing. This is why dreams seem so very real to us--to our brains, and without the benefit of waking consciousness, they are real. So it begs the question of who or what really sees or percieves things, events, reality? If it's true then that what we recall or visualize is just as real to our brains as what we actually, in the moment (in reality)experience, that means that in my mind, with only my memory of him, I can completely and authentically, re-experience being with Theo.
And I have been able to close my eyes, see him clearly in my mind, his face, his eyes, his mouth, his little hands, his soft belly, his perfect, soft skin, and feel the love in my heart, feel him, almost as if he is really here with me. The problem is not with my brain, but with my heart, which doesn't forget that he is gone. When I open my eyes, he is not there, neither can my fingers touch him or my arms hold him. And it breaks my heart hundreds of times throughout the day. But it doesn't take away from the memory, the love and the feeling that for just a second, I can almost sense him close by, filling my mind and heart, feeling his love. So whatever reality is, I don't know. While it is interesting, that study doesn't offer me all that much comfort--even if my brain doesn't know the difference, my heart and my mind do.
I have no idea how to go through this--I guess it is a little different and somewhat similar for everyone who must face it. I am thankful that we have each other and that we have so much love and support from so many wonderful friends and family, even ones we have never met.
Love,
Karla
I went yesterday evening to get my taxes done and the lady who does my taxes, who I see once a year, said, "how was your year" and I just couldn't keep from crying. I said, "The last time I was here, I was pregnant". And told the shortest possible version of the story. She was shocked. I guess it isn't what you expect to hear every day. But she was sweet and very helpful.
I am hoping to hear tomorrow or the next day from the lady in charge of the space I want to use for Theo's memorial so that I can post more details and make plans for his service. Keep checking. I will post as soon as I hear with the location, date and time.
We continue to get cards daily and they are so appreciated. Also, we have recieved nearly one hundred stuffed animals (not counting the small ones like beany babies, of which we have about 40) and I know some friends of ours have more animals to bring over. I am planning to make little cards to tie to their arms or around their necks that say something like, "This animal is given with love to you from Baby Theo". I want to keep a few to have at the memorial, but we plan to take a bunch to the hospital in the next week or so.
It's strange, in some ways it feels like everything happened so long ago. I can hardly belive it's only been two weeks, and in other ways it seems just a few seconds ago that he was here with us. All of his things still around me, everything the same, except he is not here. I can close my eyes and breathe in and bring his sweet face to my mind so clearly. I remember vividly the feeling of kissing his soft skin, his little feet, his chubby thighs. Every time I changed his diaper I kissed his legs and his feet, his toes and his knees. I remember the smell of his hair, breathing in his breath with my own. We watched a show the other night about quantum physics, our perceptions of "reality" etc., and in one part they talked about a study done with brain scans where a person was shown something, a candle burning, an event taking place, whatever, and certain areas of the brain lit up on the scan showing certain kinds of brain activity when the event or object was percieved. For the next scan, the subject was asked to simply recall seeing the same exact thing with the eyes closed and, wouldn't you know, the very same areas of the brain lit up, indicating that the brain doesn't know the difference between what it actually "sees" and what it remembers or visualizes seeing. This is why dreams seem so very real to us--to our brains, and without the benefit of waking consciousness, they are real. So it begs the question of who or what really sees or percieves things, events, reality? If it's true then that what we recall or visualize is just as real to our brains as what we actually, in the moment (in reality)experience, that means that in my mind, with only my memory of him, I can completely and authentically, re-experience being with Theo.
And I have been able to close my eyes, see him clearly in my mind, his face, his eyes, his mouth, his little hands, his soft belly, his perfect, soft skin, and feel the love in my heart, feel him, almost as if he is really here with me. The problem is not with my brain, but with my heart, which doesn't forget that he is gone. When I open my eyes, he is not there, neither can my fingers touch him or my arms hold him. And it breaks my heart hundreds of times throughout the day. But it doesn't take away from the memory, the love and the feeling that for just a second, I can almost sense him close by, filling my mind and heart, feeling his love. So whatever reality is, I don't know. While it is interesting, that study doesn't offer me all that much comfort--even if my brain doesn't know the difference, my heart and my mind do.
I have no idea how to go through this--I guess it is a little different and somewhat similar for everyone who must face it. I am thankful that we have each other and that we have so much love and support from so many wonderful friends and family, even ones we have never met.
Love,
Karla
Sunday, March 05, 2006
Reading from Theo's funeral
Etude Realiste
by Algernon Charles Swinburne
I.
A baby's feet, like sea-shells pink,
Might tempt, should Heaven see meet,
An angel's lips to kiss, we think,
A baby's feet.
Like rose-hued sea-flowers toward the heat
They stretch and spread and wink,
Their ten soft buds that part and meet.
No flower-bells that expand and shrink,
Gleam half so heavenly sweet
As shine on life's untrodden brink.
A baby's feet.
II.
A baby's hands, like rosebuds furl'd,
Whence yet no leaf expands,
Ope if you touch, though close upcurl'd,
A baby's hands.
Then, even as warriors grip their brands
When battle's bolt is hurl'd,
They close, clench'd hard like tightening bands.
No rosebuds yet by dawn impearl'd
Match, even in loveliest lands,
The sweetest flowers in all the world--
A baby's hands.
III.
A baby's eyes, ere speech begin,
Ere lips learn words or sighs,
Bless all things bright enough to win
A baby's eyes.
Love, while the sweet thing laughs and lies,
And sleep flows out and in,
Lies perfect in them...Paradise.
Their glance might cast out pain and sin,
Their speech make dumb the wise,
By mute glad godhead felt within,
A baby's eyes.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This poem was beautifully read by my aunt Nancy Helbert Salyer.
by Algernon Charles Swinburne
I.
A baby's feet, like sea-shells pink,
Might tempt, should Heaven see meet,
An angel's lips to kiss, we think,
A baby's feet.
Like rose-hued sea-flowers toward the heat
They stretch and spread and wink,
Their ten soft buds that part and meet.
No flower-bells that expand and shrink,
Gleam half so heavenly sweet
As shine on life's untrodden brink.
A baby's feet.
II.
A baby's hands, like rosebuds furl'd,
Whence yet no leaf expands,
Ope if you touch, though close upcurl'd,
A baby's hands.
Then, even as warriors grip their brands
When battle's bolt is hurl'd,
They close, clench'd hard like tightening bands.
No rosebuds yet by dawn impearl'd
Match, even in loveliest lands,
The sweetest flowers in all the world--
A baby's hands.
III.
A baby's eyes, ere speech begin,
Ere lips learn words or sighs,
Bless all things bright enough to win
A baby's eyes.
Love, while the sweet thing laughs and lies,
And sleep flows out and in,
Lies perfect in them...Paradise.
Their glance might cast out pain and sin,
Their speech make dumb the wise,
By mute glad godhead felt within,
A baby's eyes.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This poem was beautifully read by my aunt Nancy Helbert Salyer.
Saturday, March 04, 2006
Letter to Theo from Mama
This letter was written in mid-January, for the purpose of being read at Theo's funeral. While I wrote it, he slept beside me on his boppy pillow. I read it at the funeral service after Jamie read his. It was very difficult to get through, but I'm glad we did it. Both our letters were handwritten to him with decorated envelopes and we placed them in his arms after our readings. I originally wrote mine in a journal and re-copied the one for him to keep. Here is a copy to share with all of you:
My Dearest Baby,
I don't know what I can write to you that you don't already know. What can I say that you can't feel? How can I make words come for which there are none? That which is between us is beyond words, beyond pen and paper, beyond language or speech, beyond ritual or tears.
A friend told me once that having children is like taking a piece of your heart and sending it blindly out into the world. Like sending you very own defenseless heart out into an uncertain place where you can no longer provide it protection or shelter. Taking chances every day with your heart.
I know that what we have been through,and continue to go through, strikes fear into the hearts of every mother and father. For this is the greatest pain we can imagine. And when I read this, on that day when I stand before all those who love us and share this testament, I will have then realized that greatest fear. The pain, I'm sure will be like a dark stone in my heart, weighing me down, lingering on. But what can I do? I can be devastated, torn apart inside that you are gone, but I can also be thankful that I was fortunate enough to have known you at all. I can be heartbroken that I will never hold you or kiss your sweet face again, but I can also be happy that I felt you move in my belly, that my body was your home, that I was gifted with the chance to gaze into your beautiful eyes, however briefly.
I was there when you entered the world and I held you in the circle of my arms as you left it. I shared your life, I saw your eyes light up, I heard you laugh, I fed you, bathed you, stroked your hair and felt the silky smoothness of your skin. I breathed your breath and held you close and slept with you in my arms. I gazed upon your face and saw myself reflected in your features. I am thankful and glad in my heart to be your mother.
Though the pain of missing you is terrible and heavy and will be with me all my life, and I will always long for you to be here with me, I know that you aren't really gone. You will be with me always. In the wind and the rain and the sunlight. In every flower blossom, every starshine, every snowflake and autumn leaf. In all that is beautiful and bright is Theo. Every blade of grass, every fluffy cloud, deep velvet night and bright shining morning. In every birdsong and butterfly, in every rainbow reflection on dragonflies wings. In every tear from my eyes, with every beat of my heart, every time I feel peace, joy and love, you are with me. And as long as I have breath, I will love you and keep you close.
Until I can see you again.
I love you my sweet Baby.
Love,
Mama
My Dearest Baby,
I don't know what I can write to you that you don't already know. What can I say that you can't feel? How can I make words come for which there are none? That which is between us is beyond words, beyond pen and paper, beyond language or speech, beyond ritual or tears.
A friend told me once that having children is like taking a piece of your heart and sending it blindly out into the world. Like sending you very own defenseless heart out into an uncertain place where you can no longer provide it protection or shelter. Taking chances every day with your heart.
I know that what we have been through,and continue to go through, strikes fear into the hearts of every mother and father. For this is the greatest pain we can imagine. And when I read this, on that day when I stand before all those who love us and share this testament, I will have then realized that greatest fear. The pain, I'm sure will be like a dark stone in my heart, weighing me down, lingering on. But what can I do? I can be devastated, torn apart inside that you are gone, but I can also be thankful that I was fortunate enough to have known you at all. I can be heartbroken that I will never hold you or kiss your sweet face again, but I can also be happy that I felt you move in my belly, that my body was your home, that I was gifted with the chance to gaze into your beautiful eyes, however briefly.
I was there when you entered the world and I held you in the circle of my arms as you left it. I shared your life, I saw your eyes light up, I heard you laugh, I fed you, bathed you, stroked your hair and felt the silky smoothness of your skin. I breathed your breath and held you close and slept with you in my arms. I gazed upon your face and saw myself reflected in your features. I am thankful and glad in my heart to be your mother.
Though the pain of missing you is terrible and heavy and will be with me all my life, and I will always long for you to be here with me, I know that you aren't really gone. You will be with me always. In the wind and the rain and the sunlight. In every flower blossom, every starshine, every snowflake and autumn leaf. In all that is beautiful and bright is Theo. Every blade of grass, every fluffy cloud, deep velvet night and bright shining morning. In every birdsong and butterfly, in every rainbow reflection on dragonflies wings. In every tear from my eyes, with every beat of my heart, every time I feel peace, joy and love, you are with me. And as long as I have breath, I will love you and keep you close.
Until I can see you again.
I love you my sweet Baby.
Love,
Mama
March 3, 2005
The last couple days have been difficult. I have had trouble falling asleep and have had headaches. Jamie has headaches, loads of tension in his back and is trying to get through grading stacks of papers for his classes. Last night I couldn't sleep at all and kept thinking about Theo, looking at his bassinet which is still next to the bed, and imagining him there, remembering when he slept there, how he would wake me with his little baby sounds, and if I took too long, he would start to yell to be fed. He didn't care that he needed a new diaper first, he wanted his food! I looked at the bassinet, next to the bed, and remembered him there, sleeping, soft baby breathing, hands thrown up and out, relaxed, open. And my thoughts turned to the very last night he slept there, August 19th, and the morning of Saturday August 20th began replaying in my head. His waking me up that morning at 6:00 with his baby sounds, changing him, bringing him to bed with me, breastfeeding, dozing with him in my arms, both of us sleeping and waking around 8:00, getting up, changing him, playing with him on the bed--talking to him, Theo making his sweet little"oooh oooh" noises, looking up at me, carrying him downstairs, feeding him a bottle, giving him his bath, talking to Jamie on the phone calling from Roanoke ("We're fine. He just had a bath, do you want to talk to him...."), vacuuming the floor, Theo crying, "Shhh..you're ok", Theo quiet, turning off the vaccuum, looking over, seeing him still and pale, running to him, picking him up, blowing in his face, yelling his name, rubbing his legs and arms, him coming drowsily, slowly around, feeling scared, shaken ("Are you ok, Baby? Baby?"); getting him dressed, turning him over to pull his little onsie down and then, his vomiting all over the pack and play, cleaning him, changing his shirt, carrying him to the sofa, putting him on his boppy pillow, watching and watching, scanning his face, every movement, noticing strange, unequal movements on his left and right sides, left eye open, right eye closed--I think he was trying to close his eyes and couldn't control his left eye. Theo becoming agitated, coughing, leaning him forward, holding him, throwing up again, cleaning him, getting frantic, talking to the pediatrician on-call, trying to feed him sugar water, sleepy, didn't want it, throwing up a third time, leaving qucikly to go the emergency room, seeing myself standing alone in that big room watching my tiny, new, perfect baby, wrapped up in blankets to keep him still, have the first CT scan of his life, watching the light move across his cheeks, his nose, forming the + over his face for proper placement, not knowing how many more of these there would be to come--feeling alone, scared, empty, terrified, so sorry for him, so small. Thinking of his pain, his headaches we didn't know about, what he must have experienced....All this going through my head, pictures, flying by, I couldn't stop the thinking and some piece of me wanting to remember, wanting to watch it, never to forget. That day when in the space of a moment, just a second, everything changed. I know now that he had a seizure--that was the very moment that everything changed. When I looked over and saw him lying there on his pack and play, still, pale, barely breathing. Even when he came around and regained his color, started breathing normally, he wasn't the same and after that, things happened so fast, so fast. And I know that maybe it isn't good for me to replay these things over and over, not when it doesn't necessarily help me, but I did it because I wanted to remember, even though it was painful, and then I couldn't seem to stop the images even when I wanted to. I couldn't stop crying. I couldn't stop seeing him, small, helpless, sick. There are several moments in time which stand out with very precise clarity through this whole six month ordeal, some things I don't recall as clearly, but that morning, that day when everything changed, when it all started, is so clear, every single second. I can stop, start, skip, freeze frame, rewind, fast forward. Wondering, worrying. The ER doctor at St. Mary's, "de beby has blood on de brean", "What? What do you mean blood on his brain!?"....Looking out the window at St. Mary's ER, on the cell phone, looking away from the nurses trying to find a vein in his baby arms and legs for hydration, feeling so sorry to have to tell Jamie over the phone, "come home, the baby is sick.... CT scan...blood in his brain. Please drive safely"...Worrying, worrying....Riding in the ambulance to MCV.... more tests, MRI.... Jamie finally there safe with me..."It's a tumor, m'kay?" ....No, that was not "m'kay". Not m'kay at all. It was never okay again after that.
I finally got out of bed, crying as quietly as possible, nose completely stuffed up, not wanting to wake Jamie and took a long, hot bath, talked to Theo, felt a little better and finally went to sleep around 2:30 a.m.
Turns out that Jamie woke up just after I fell asleep and couldn't find sleep again. He got up and took a shower before coming back to bed.
Today we talked to a man down the street who lost his son in a car accident--killed by a drunk driver--a year ago. I remember when it happened, I was pregnant. It remember thinking "How awful for that family". He saw us walking down the street today and came out to talk to us. He had seen Theo's picture in the obituary.
He told us it gets better with time, although he also said that he still cries every day for his son. He said his wife does not, she holds it all in and has really suffered because of this. He encouraged us, mostly Jamie it seemed, since he was looking at him, to cry when you feel it, "just let it out, get it out. It will be better for you that way". I saw a tear squeeze itself out the corner of his eye and track it's way through the lines around his eyes and then down his cheek. He hugged us.
My friend Lisa said that now we are members of a club that nobody wants to be in, and only the members really know what it's like to be there. Yeah. It's a club I wouldn't wish for anybody in the world to have to join. And that's another thing, you don't get a choice about it. None of us would choose it. But we have to keep paying the dues I guess. Whatever they are. I think they must be different for everyone, maybe similar, but each is different. But we should pay them, if you hold out, you end up like that guy's wife--bitter, sad, broken inside, holding it in, not knowing what to do with all the locked up grief and pain, not able to heal. I hope I sleep better tonight. I still don't want to move his bassinet or any of his things just yet. It's too soon. I want to feel him near me. As much as I can.
I finally got out of bed, crying as quietly as possible, nose completely stuffed up, not wanting to wake Jamie and took a long, hot bath, talked to Theo, felt a little better and finally went to sleep around 2:30 a.m.
Turns out that Jamie woke up just after I fell asleep and couldn't find sleep again. He got up and took a shower before coming back to bed.
Today we talked to a man down the street who lost his son in a car accident--killed by a drunk driver--a year ago. I remember when it happened, I was pregnant. It remember thinking "How awful for that family". He saw us walking down the street today and came out to talk to us. He had seen Theo's picture in the obituary.
He told us it gets better with time, although he also said that he still cries every day for his son. He said his wife does not, she holds it all in and has really suffered because of this. He encouraged us, mostly Jamie it seemed, since he was looking at him, to cry when you feel it, "just let it out, get it out. It will be better for you that way". I saw a tear squeeze itself out the corner of his eye and track it's way through the lines around his eyes and then down his cheek. He hugged us.
My friend Lisa said that now we are members of a club that nobody wants to be in, and only the members really know what it's like to be there. Yeah. It's a club I wouldn't wish for anybody in the world to have to join. And that's another thing, you don't get a choice about it. None of us would choose it. But we have to keep paying the dues I guess. Whatever they are. I think they must be different for everyone, maybe similar, but each is different. But we should pay them, if you hold out, you end up like that guy's wife--bitter, sad, broken inside, holding it in, not knowing what to do with all the locked up grief and pain, not able to heal. I hope I sleep better tonight. I still don't want to move his bassinet or any of his things just yet. It's too soon. I want to feel him near me. As much as I can.
Wednesday, March 01, 2006
I just thought I would post and let everybody know how we're doing. I just finished copying and pasting all the previous entries and comments into a separate word file on our computer in case anything happens to the blog. While I was doing that, I read through all the comments-- and some of the previous posts--all the way back from the beginning. Some of my posts really just broke my heart. Ones where I was so hopeful, where I recorded that I saw his eyes focus on me (which I did) and where I said "Yay! He's sucking!" He only sucked a tiny bit that day, but it was enough to inspire hope that I would be able to feed him again. Looking back, I just got exhausted reliving all that, even in the space of 45 minutes or so, and only scanning it. Skipping through, being struck by certain phrases, certain moments in time. I was also really touched once again by so many of the comments throughout this whole past six months. I don't know how many of you realized that Theo left us on February 20, 2006, exactly 6 months to the day from when we first went into the hospital on August 20, 2005.
It seems like years ago and in some ways, just like last week. Of the more recent comments, I noted one posted by a girl I haven't seen since high school --- now a woman with her own children --- who was worried by posting a comment as his funeral was starting that she might be in some way invading our privacy. I thought about that and although I have mentioned and thought many times about the many who have followed Theo's and our story through this blog, I really have no idea how many people have really come to know us through this. How many people I have allowed up to the window of our lives. And how there is no way that Kelly could invade our privacy when I voluntarily opened the shades for the world to see in. It started just as a quick way to notify people of the situation and then to update everyone on how he was doing day-to-day without having to send out several emails or take or make so many calls. But it turned into something else, something that has helped me personally in so many ways--sharing my thoughts, even when I have kept much of my private thoughts and pain inside... I have shared a great deal, letting unseen, unknown tens, hundreds, maybe even thousands, for all I know, into our little world. This chronicle has been healing to me, helping me to maintain some objectivity and at the same time explore my feelings, hurts, questions, fears. It has allowed me to share my wonderful baby's life with so many people, all of whom deserve to know him, or at least know of him. And he deserves to be known. And above all, I hope our story might help other people who might be experiencing similar nightmares, or who have done so in the past. I want to continue to write about how we are moving through this next stage of our grief and pain, for all those same reasons.
Yesterday I took the original draft of the "Theo and the Baby Angels" story handwritten by my aunt Dolly with a sketch she drew of me and Theo, to be matted and framed. A man named Ned, who had helped me the day we were leaving to go out of town for the funeral by on-the-spot framing a picture of a dragonfly with Theo's name in the wings (created by my friend Lisa) was there to help me again. I reminded him who I was and he asked how I was doing. He looked at me very seriously, paused, and said, "You never get over it." I told him I didn't think I would. With tears in his eyes, Ned told me about his son Christopher, who was born January 13, 1971 and who died of a vascular problem on February 2, just two short weeks after his birth. We talked, and I was so thankful that he shared his story with me. There are so many people who have lost their babies, who still miss their children, who still feel the hole left in their lives every single day. I hope that Theo's story and our story can somehow help people to know that they are not alone. And help other people who know families who have lost a child, something of what it's like.
As I said before, grief comes in waves. I went to the grocery store yesterday and it seemed there were children and babies on every aisle. And I swear they were looking right at me, directly into my eyes, and they looked as though they knew that I was a mommy without her baby. They looked kindly at me, with love. They made me feel very sad, but somehow comforted and even though I did get teary eyed, and cried a little in the spice aisle, I was ok. Some things make me cry a lot, others don't. Yesterday, the big trigger was a picture we took of Theo just a few weeks ago. He was smiling in his sleep. I loved that he smiled sometimes in his sleep. Jamie sometimes would stand over him with a camera while he slept hoping to catch that fleeting little smile that lit up his sleeping face, just for a moment. Those brief smiles meant to me--to both of us--that he had happiness, he had good, sweet dreams and in them, he was happy. Some way, even with a nearly completely damaged brain, he was able to have lovely, happy dreams and to smile in his sleep. That one photo made me cry yesterday every time I looked at it. Yet I couldn't seem to keep my eyes from it.
And I wondered this morning when I woke up, how many mornings until my first thought is not, "My child is dead"? But we are able to laugh sometimes and love each other, be there for each other. We enjoy moments through the day, especially ones we can share. I am so thankful to have Jamie. He is a wonderful father and a wonderful partner. He took such good care of Theo and he is taking good care of me.
I am very grateful that we had the time we had with Theo. I can only imagine the great pain of parents who wake to find their baby dead in the crib of SIDS or the parents whose child dies suddenly in an accident or the untold horror of the family who may not even know where their child may be, whether she is alive or dead, or a family who knows for certain their child died a violent, malicious death.
We have been fortunate in many ways. We had sacred, peaceful, love filled times with Theo even in the midst of pain and suffering, ours and his. At least we had that.
But the pain of losing our child, no matter the cause, as Ned shared, will be with us the rest of our lives.
Thank you again for all the love and care--the cards, flowers, gifts, support, everything you have all done to help us. Nothing has gone unappreciated. I will continue to post our story. I will share my letter to Theo and details of his memorial service dates and such. Please check back.
Love,
Karla
It seems like years ago and in some ways, just like last week. Of the more recent comments, I noted one posted by a girl I haven't seen since high school --- now a woman with her own children --- who was worried by posting a comment as his funeral was starting that she might be in some way invading our privacy. I thought about that and although I have mentioned and thought many times about the many who have followed Theo's and our story through this blog, I really have no idea how many people have really come to know us through this. How many people I have allowed up to the window of our lives. And how there is no way that Kelly could invade our privacy when I voluntarily opened the shades for the world to see in. It started just as a quick way to notify people of the situation and then to update everyone on how he was doing day-to-day without having to send out several emails or take or make so many calls. But it turned into something else, something that has helped me personally in so many ways--sharing my thoughts, even when I have kept much of my private thoughts and pain inside... I have shared a great deal, letting unseen, unknown tens, hundreds, maybe even thousands, for all I know, into our little world. This chronicle has been healing to me, helping me to maintain some objectivity and at the same time explore my feelings, hurts, questions, fears. It has allowed me to share my wonderful baby's life with so many people, all of whom deserve to know him, or at least know of him. And he deserves to be known. And above all, I hope our story might help other people who might be experiencing similar nightmares, or who have done so in the past. I want to continue to write about how we are moving through this next stage of our grief and pain, for all those same reasons.
Yesterday I took the original draft of the "Theo and the Baby Angels" story handwritten by my aunt Dolly with a sketch she drew of me and Theo, to be matted and framed. A man named Ned, who had helped me the day we were leaving to go out of town for the funeral by on-the-spot framing a picture of a dragonfly with Theo's name in the wings (created by my friend Lisa) was there to help me again. I reminded him who I was and he asked how I was doing. He looked at me very seriously, paused, and said, "You never get over it." I told him I didn't think I would. With tears in his eyes, Ned told me about his son Christopher, who was born January 13, 1971 and who died of a vascular problem on February 2, just two short weeks after his birth. We talked, and I was so thankful that he shared his story with me. There are so many people who have lost their babies, who still miss their children, who still feel the hole left in their lives every single day. I hope that Theo's story and our story can somehow help people to know that they are not alone. And help other people who know families who have lost a child, something of what it's like.
As I said before, grief comes in waves. I went to the grocery store yesterday and it seemed there were children and babies on every aisle. And I swear they were looking right at me, directly into my eyes, and they looked as though they knew that I was a mommy without her baby. They looked kindly at me, with love. They made me feel very sad, but somehow comforted and even though I did get teary eyed, and cried a little in the spice aisle, I was ok. Some things make me cry a lot, others don't. Yesterday, the big trigger was a picture we took of Theo just a few weeks ago. He was smiling in his sleep. I loved that he smiled sometimes in his sleep. Jamie sometimes would stand over him with a camera while he slept hoping to catch that fleeting little smile that lit up his sleeping face, just for a moment. Those brief smiles meant to me--to both of us--that he had happiness, he had good, sweet dreams and in them, he was happy. Some way, even with a nearly completely damaged brain, he was able to have lovely, happy dreams and to smile in his sleep. That one photo made me cry yesterday every time I looked at it. Yet I couldn't seem to keep my eyes from it.
And I wondered this morning when I woke up, how many mornings until my first thought is not, "My child is dead"? But we are able to laugh sometimes and love each other, be there for each other. We enjoy moments through the day, especially ones we can share. I am so thankful to have Jamie. He is a wonderful father and a wonderful partner. He took such good care of Theo and he is taking good care of me.
I am very grateful that we had the time we had with Theo. I can only imagine the great pain of parents who wake to find their baby dead in the crib of SIDS or the parents whose child dies suddenly in an accident or the untold horror of the family who may not even know where their child may be, whether she is alive or dead, or a family who knows for certain their child died a violent, malicious death.
We have been fortunate in many ways. We had sacred, peaceful, love filled times with Theo even in the midst of pain and suffering, ours and his. At least we had that.
But the pain of losing our child, no matter the cause, as Ned shared, will be with us the rest of our lives.
Thank you again for all the love and care--the cards, flowers, gifts, support, everything you have all done to help us. Nothing has gone unappreciated. I will continue to post our story. I will share my letter to Theo and details of his memorial service dates and such. Please check back.
Love,
Karla
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