Monday, October 29, 2012

31 for 21: Sharing

Much of this world views Down Syndrome as ugly, scary, and a broken-ness to be avoided. 

The doctor that delivered Elise told us with an apology and a cracking voice that our beautiful, pixie-sized daughter had Downs.  He followed this up with a comment that will forever be burned into my heart, that "there are many people out there who are willing to adopt babies like that."

When I went back to work, I sweet-talked the administration of the school that I was working at to do research on kids with Down Syndrome, their abilities, learning tendencies, and their future prognoses, as a teacher inservice credit. Ten years ago, for the most part, the information was very outdated.  The pictures were of tragically low persons in institutions.  The general future outlook was grim.  There were very few newer resources that were more positive.  You had to look very hard to find them.  The Einstein Syndrome was a strikingly fresh new look at Down Syndrome.  For the best resources, you were far better off calling your local Down Syndrome Association and talking to parents of older kids than actually reading the easiest to come by books.

I was getting more and more angry as I read.  I was frustrated at being told that my daughter had no boundless hope.  I was furious that at a measly 5 and 1/2 pounds she was literally having her future taken from her.  I was spoiling for a fight within 2 months.  I was a smoldering ash waiting for a dry forest opportunity.

When somehow, I stumbled onto "Down Syndrome Calendar".  I opened the page, and Band of Angels poured a balm over my very soul.

Their Beautiful Faces calendar and the Common Threads book, healed me and gave me hope.  They helped me give grace to those who clung to the darker outlook.  The gorgeous photos showed me that I was not alone thinking that my daughter was beautiful, despite the obvious features that the world told me spelled grief.  The triumphant stories in Common Threads gave me the confidence to go forward with the strongest of anticipation of a happy life.
I will be forever thankful for that web detour.  It gave me the peace I was craving. 
I share Common Threads with every new parent, and every pregnant woman that is told they have a high likelihood to have a child with Downs who is pressured into further testing.  I push it like a drug.  Because in a world that treasures brilliance and perfection, there is something magical on the 3rd chromosome in the 21st pair.  Sometimes I pity those who miss out.  I am being honest.  It is a great perspective to have.  Everyone should want a child with Downs.  I mean it.
If you have not seen this book, buy it.  Borrow it.  Read it.  Change your perspective.  Grow.  Be jealous of me...!  :) 
Band of Angels was started by a woman, Cynthia Kidder, who wanted to share the story of her son.  And to bring into focus "the discrepancy between the life that was predicted for Jordan and the life he actually lives".
Never underestimate the value of sharing your story.  You never know who needs to hear it.

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