This is my Brother.
This is my Brother.
My younger brother has Cerebral Palsy. If you’re picturing that kid from grade school who wore leg braces, or the guy at DMV with slightly slurred 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.
People often ask what it was like for me when Dustin was born. I'm sure that it was a big deal (two counselors have told me so). But, it also kind of wasn't. I was 5. We lived in small town Ohio. That summer there was a Fireman’s Parade and “Bette Davis Eyes” playing constantly over the public pool’s gravel lot. My greatest desire was for a KISS Colorforms Set (denied). So there you have it: 1980.
This was way before ultrasounds and amnio. I don’t think anyone knew he’d be a boy, much less a boy with death-defying congenital brain damage and a stomach malformation that no one knew how to fix. There were emergencies and surgeries, tubes, bleeding. A move to California. An arsenal of tragic prognoses: Dustin won’t walk, Dustin won't talk, Dustin is going to die. He will never recognize your face. 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 sisters. How my parents, mid-20′s, endured this I have no idea - except to say that the love of a parent (and the grace of God) can really take your breath away.
If that was the storm, my brother was the eye. Adorable, kissable, dressable, huggable, squishy and naked. So, so little. And soft. In my medical opinion, he was perfect. I remember Dustin cried a lot and I had enormous satisfaction thinking I was the only one who could help him. I used to rock him on a pillow and make up personalized versions of oldies’ tunes. I put caterpillars on his belly and propped up toys for him to stare at. What it was like was a feeling of confidence and pride, and purpose. A role to play in giving comfort. Only older siblings know this sense of ownership. My brother was fully MINE.
People ask me about these memories because they fear bringing a disabled child into their family might screw up his siblings. Ignorant people with degrees have told them so. They look at his sisters and think, “tsk tsk, neglect, how sad.” They don’t consider that the weakness of our brother can make him all the more loveable, his survival all the more worthy. 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.
