Friday, June 09, 2006

This is an excerpt from am email I wrote to my mom. I think it captures where we are at. And I'm so drained I can't imagine re-writing it just for the sake of it being original on the blog.

Coram had a pretty good week. He got to go to Playland with his school on Wednesday. It was all courtesy of CKNW, the radio station. the teachers wanted me on had in case he needed me - so I hung out a Brentwood mall with one of the teacher's cell phones. It was pretty boring for me, but it woudl have been less than five minutes had they needed me. they wanted to give him the change to be successful without me, which is why I didn't just automatically go along. He made it through the whole day with flying colours...they didn't need to call me, and he was on top of the world that night.

But - typical of Coram when his routine is off - he didn't make it to school on Thursday. He stood on that bottom step of his buss and whined but he couldn't get himself to go up. I talked it over with the teachers, and they pointed out that every time he doesn't make it on the bus and I try to bring him in, he ends up having a fit and coming home with me anyway - so I didn't bother. We just hung out and went to the park.

So I guess that's how it goes. Good days, triumphs (like WOW he made it through Playland!) and then not so good days. I think there is a process we have to go through where we come to terms with the lifelong implications of who Coram is. It's better to know what's going on than it was to be mystified...but at least when we were mystified, we could hold on to the hope that there might be some missing piece of a puzzle and then BAMBO he'd be a normal kid. So thats another little death. But he's still an amazing, brave kid. I still maintain that the way the world hits hard...everything is bewildering, smells strongly, is loud, and rubs against his skin.... if it were me, I'd never get out of bed. He's an amazing boy for just getting up and facing the day.