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.