Saturday, May 28, 2011

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.


  1. Thanks for this posting Meg. It's nice to hear that you see you brother as a blessing and not a burden. I've often wondered what it's like for an older sibling of a disabled child.

    I have a 4 year old daughter with Down Syndrome. She has a 6 year old and 2 year old brother. We found out about her diagnosis half way through my pregnancy. After the ultrasounds and amnio they sat us down and gave us "the news" and then told us about institutions we could place her in, how slow she could be, ect. All negative. Then they offered abortion if we wanted to go that route. We were floored and terrified. All this info withing 15 minutes. Our dreams for a perfect baby seemed shattered. We didn't hesitate to say no abortion. God gave us this child for a reason.

    Our biggest fear was how this would affect our son. He was only 2 but we were already thinking ahead. Was this a life sentence for him? A responsibility he never asked for, placed on his shoulders when my husband and myself would be too old to take care of her. It didn't seem fair to do this to him but we figured this could also be a good thing for him.

    Our Sarah was born and because of a severe congenital defect, stayed in the hospital for the 1st 2 weeks of life and returned a few more times before she had heart surgery at 3 months. Caleb loved her from the get go. He was so upset that "his" baby wasn't coming home yet. He got so excited when he helped her walk for the 1st time. She was such a joyful ans sweet baby. We realized that our "shattered baby dreams" had been replaced by bigger and better dreams...for all of our family.

    Now aged 6, Caleb cheers when she says a new word and encourages her when she tries to do everyday things. He walks her to her JK class when they get to school and we've been told he bear hugs her if they cross paths during the school day. He plays princess with her.

    We haven't explained to him that his little sister has Downs. He sees that she isn't like the other 4 year olds and he doesn't seem to care. She is the most charming and loveable little girl. She makes everyone stop and smile. In our minds, we are helping our sons and our community more accepting of peoples' differences and showing them that being different is not scary, it is something to embrace.

  2. Rachel thank you so much for sharing your story. It's a beautiful story that I hope will uplift others who read this blog - that is if anyone else reads this blog! :) I have more lengthy comments for you which I tried to email you, hopefully it went through. Would love to encourage you and your growing family. Congratulations on three children!! M.