Before continuing, please go to the link below and read the short story written by someone else...
I have been struggling this week with living in "Holland". I love that little essay. It is spot on, and the first time I read it, after a fellow mom of a daughter with Rett Syndrome posted it on Facebook, I thought and thought about it for days. And cried, and got made, but also felt a little more accepting. Chad read it and then a few days later he came into the living room where I was trying to make a picture with Lucy using tissue paper that she could scrunch up and then we were trying to glue it on the paper. We had done it before, but this time was a disaster and I was tearful, and Chad said, "Are you doing your crafts in Holland?" and that made me laugh, because of course we were. We don't ever get to take any little breaks to Italy...it is all Holland, all the time. Although there are so very many things Lucy cannot do in the "regular" way, for some reason, this week I have been sadly lamenting her inability to color by herself, or to paint, or play pretend. Or to get any type of creativity out in the usual way. I think that is so important and I rack my brain trying to figure out ways for her to be creative, but part of that process is independence. Doing whatever you want, in whatever way you want to. Like one time in Kindergarten I colored a horse red, or with a red mane, and my stuffy teacher said it was wrong because horses are not red! What! Who cares? I want Lucy to be able to color horses any color she wants and she might have all kinds of ideas about what colors she thinks things should be, but she can't do what she wants to do. I need to figure out ways that she can.
I guess I went on a slight tangent there, but here in Holland my sweet Lu can't pick up a crayon and draw a beautiful picture by herself. She can't even hold onto the crayon for more than a few seconds.
And I am enraged about it.