Tuesday, April 17, 2007


So, here we all are, doing our respective "things" as the earth spins round and round. Some of us blessed with ordinary every day brown corduroy brains, some of us with tiny underdeveloped wrinkled cotton brains, and some of us with fantastic multi-colored velvet brains. Isn't it strange how we are all thinking differently all the time? I watched a show about some autistic savants this morning who put on a piano recital. It made me jealous of the mothers of these blind autistic boys...knowing that they at least have their music to cling to; something to show the world their boys are "in" there. Sounds rather pithy of me, doesn't it? It's hard to explain the levels of stature amongst the special needs population. I can remember being jealous of some moms we knew in Omaha who had boys with Down Syndrome, because I remember thinking, at least they have a "cause" to identify with, groups that form solely because of their child's disability, books to read to help them navigate the unchartered waters ahead of them. Sometimes I feel our family is hopelessly floating out at sea, bobbing helplessly in the ocean as sharks swim around and wait for the slightest scent of blood. Hmmmm. It's an odd world, to be sure. I enjoy the poem "Welcome To Holland", which describes to a parent what it's like to be thrust into this world of disability with your child. I prefer to think of it as "Welcome to the Outer Limits." Being undiagnosed (with no savant skills in sight) is rather like being in a completely limitless world, and yet having limits all around us. True, we don't have any type of prognosis ahead of us, which means we aren't counting out Mason's days, but we likewise have nothing to really rely on as far as long term life plans. Mas is very healthy compared to how he used to be, but yet he cannot speak; cannot tell us if his stomach hurts or his tooth hurts or if he loves us or if he knows who we are. We are so blessed in so many ways, but it can be frustrating to parent a little soul who has few ways to reach out to others. I guess the important thing to remember is that we know he is in there, even if he doesn't have any "pet tricks" to show anyone else. I have to remind myself to cling to the moments when he truly shows his deep inner light to us; when we see it flicker and glow in him, to enjoy that wavering light before it goes back inside. Perhaps that is his special skill.

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