The Diving Bell and the Butterfly

Sara and I watched The Diving Bell and the Butterfly last night. We had wanted to together but only decided a few days ago we were ready.

It is a beautiful movie. The imagery and photography is stunning, and in some places a little unnerving.

I asked Sara if the opening sequence, where he is starting to open his eyes, is similar to her experience. She gave me a long slow "yes". I asked her if it disturbed her to watch this and she said "no". I asked her if she wanted to go on and she said "yes". I said to her "your experience is a little different...he was in a coma the whole time and woke up, eyes open, into locked-in. you were awake and hearing, but not able to open your eyes yet." she said "yes". I said "you must have been so scared.." and she replied "yes". I kept talking to you, right from your accident, didn't I? "yes" Do you remember me you I could feel that you were there? "yes" You were calling me, weren't you? "yes" You knew I would find you... and she smiled and blinked "yes". I'm so glad I listened... "yes". We held hands and looked into each others eyes for a long moment. We do that often...always have. And then I smiled too.

I told her that I was scared too, that I wasn't really feeling her and just being hopeful, until I opened her eyes up the first time after finding out she was locked-in, and seeing her looking at me and responding to me. I can't describe the feeling of knowing that your child is there and finding out that you were right. I don't know how, but I've always been connected to my children - some mental thread connecting us...I've had it with all three of my children.

I use past tense only because of my first born, Christopher. (9/12/87-5/27/88)

She and I went back to watching the movie. Paused a few times to make sure she still wanted to keep going, which she did. I asked her afterwards if she wanted to talk about it, the movie. "yes". Do you want to do it now? "no" I understood that. I really didn't want to talk about the rest of it then, either. I think there are some things to internalize.

I did tell her that it is still just as rare, and still just as understood a syndrome as it was 11 years ago. But that we learn every day something new, her and I. And she is so amazing and inspiring to me - her determination to heal and recover, not just linger. And to that she smiled, and nodded her head "yes". Exactly the point...