Tuesday, November 6, 2012

Different different children

"C" at school

Here's a quote from Andrew Solomon, author of the new book "Far From the Tree: Parents, Children and the Search for Identity," published this month by Scribner. It appears in an article he wrote for the New York Times Magazine, called "How Do You Raise a Prodigy?" (Solomon is also mentioned in this lovely article about raising children with differences by Jane E. Brody.)
"Having spent 10 years researching a book about children whose experiences differ radically from those of their parents and the world around them, I found that stigmatized differences — having Down syndrome, autism or deafness; being a dwarf or being transgender — are often clouds with silver linings. Families grappling with these apparent problems may find profound meaning, even beauty, in them."
It just can't be over-emphasized how utterly different children with profound disabilities are from other "different children". The clouds they bring sport no silver, not in their linings, not anywhere.

And yet, often our hope for a cure or improvement endures. No amount of reason or evidence to the contrary can eradicate it.

I am realistic, maybe to a fault, about C.'s disabilities and prognosis. I can even joke with my family about her condition to ease our pain.

Nevertheless, I still fantasize about one day bringing C., walking and talking, to visit all those neurologists who wrote her off just to watch their jaws drop. At times, I see us regaling Oprah and her audience with details of "the miracle" - along with a few before and after photos of C.

Wheelchair update:

Week 3 and the footrest is still "being fixed", according to the teacher. So today we brought C. to school in our own wheelchair. My husband bounced it down the 24 stairs and then carried C. down separately in his arms. Then we "walked" her up the stairs and shlepped the wheelchair up separately again.

I give her so much support up the stairs I'm not sure she's technically "walking". But it's easier that full- fledged carrying.

At least her feet didn't dangle today.

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