I wondered whether or not to let Sophie go to her school's Black and White Ball. She is graduating from eighth grade, but she goes to a school where we've never really been a part of the larger student body. She's in what's called a special day class, and while that small community is a bright and warm one, the rest of the school is enormous and we've never really felt like part of it. I almost always dread the "normal" activities -- where I feel compelled to go and almost pretend that we're just like everyone else. It's a grit your teeth and we're here because we're integrated into normal life but not really kind of feeling, and as the years have gone by and I've grown more confident in accepting what our life really is, I haven't had much of a problem saying no to some things.
But when I asked the aides in Sophie's class whether or not I should bring her, they insisted that of course she needs to come! And I found out that I not only didn't have to go, but that I was not allowed to go! It seems that the Eighth Grade Black and White Ball is for the students only. It was good comeuppance for my own negative projections -- and an out for me, too.
I dressed Sophie in her white, silky dress and some black tights. She is weakened right now by ESES and looks very, very thin, but she smiled when I told her that we were going to the dance. She really did. And when I dropped her off, I gave her aide my camera and begged her to take some pictures. She walked off with her friends Maria and Caesar and evidently danced with them, too.
A life of her own.