It's been a while

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

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

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

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

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

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

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

Love,
Karla