Let's Talk Disability and Siblings.

Me & My Dustin.

   My brother has Cerebral Palsy. If you’re picturing the kid from your grade school who wore leg braces, or the guy at DMV with slightly drooly speech, that isn’t him.  My brother is the one-in-a-million guy slumped over in a wheelchair typing out genius thoughts by a stick attached to his hat.  That is to say, his case is severe.  And miraculous.

I’m often asked what it was like for me when Dustin was born.  I'm sure that it was a big deal (my therapist has told me so).  But, honestly?  It kind of also wasn't.  I was 5.  We lived in a small Midwestern town.   There were Fireman’s Parades and the public pool had a gravel lot.  “Bette Davis Eyes” was always playing and my greatest desire was to get the KISS Colorforms Set (denied). So there you have it, the early '80's.

This was way before ultrasounds and amnio.  I don’t think anyone knew he’d be a boy, much less a boy with very significant brain damage and a stomach malformation that would critically endanger his life.  There were emergencies and surgeries, a move to California.   An arsenal of tragic prognoses: Dustin will die, Dustin won’t walk, Dustin won't talk.  Dustin won’t recognize you, to operate would waste space.  Warnings of divorce, urgings to institutionalize.  The exact words “let nature take it’s course.”  A spooky oracle concerning dysfunctional siblings.  How my parents, mid-20′s, endured this I don’t know except to say that the love of a parent (and the grace of God) can really take your breath away.

But if that was the storm, Dustin was the eye.  Adorable, kissable, dressable, huggable, squishy and naked.  So small and soft.  In his sister's medical opinion? Perfect.  I remember he cried a lot and I had enormous satisfaction in thinking I was the only one who could soothe him.  I rocked him on a pillow, singing personalized versions of oldies’ tunes.  I put caterpillars on his tummy and propped up toys for him to stare at.  I remember feeling confident and proud.  I see my nieces now with my son, and I know their sense of ownership. I fully considered Dustin to be MINE.

People ask me about these memories because they think bringing a disabled child into their family might be a horrible burden on his siblings.  Ignorant people with degrees have told them so.  They look at his sister and think, “poor thing, she’ll be neglected, she’ll be so sad.”   They don’t consider that her brother’s weakness might make him all the more loveable, his accomplishments all the more worthy and his life all the more special.  I thank God that my parents made a choice to shelter me from prejudice, but not from disability.  I pray more parents will do the same.