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