My good friend from down the street is in Richmond today. In fact, she's been there all week. On the first day of school, we went out for chai, and it was a good thing- as I was dropping her off at her house, the school called to have her pick up one of her boys. By that evening, they were once again in fear of losing him- after ten seizures. And as far as they can tell, the only reason was he got a little fever.
I'm worried about her, and him. I'm worried about him, because hey, he's a little guy with lots of issues including seizures, and seizures are no joke. I worry about her sitting by him every time he gets a little cold, or a sore throat, or anything that might put his temp up a little, because it could trigger seizures, and they could lose him.
His brothers are also severely disabled, and have autism on top of the other issues of severe hydrocephalus they all share. This lady takes care of them, makes sure they get their food, they keep clean, they get time to play and move around and practice their walking and their swallowing. She is part of teaching them to feed themselves and communicate with modified signs. They laugh, they cry, they squeal, and the little guy even says hi.
And I come back to stupid arguments. Would she rather they be as they are, or possibly dead? And I can tell you what I would pick. I love those boys, as they are. She faces the possibility of losing one- any one of the three- at every moment. She works hard to keep them not only alive, but happy, growing, and learning. She is not interested in them suffering through measles on top of everything else, or risking death from it. Or seizures.
Stimey had a friend lose a son recently. I don't know what happened. But it wrenches me to even think about the possibilities of pain that Stimey's friend must be going through. It is unimaginable. May I never, never, never know what that feels like.
Which would I prefer, autistic or risk of dead? I'll take autistic.
Eleanor: There is everything in life, but hope.
Henry: We're both alive. And for all I know, that's what hope is.
-James Goldman, The Lion In Winter