Wednesday, August 5, 2015

Of Time and Place

Just before school let out, I learned The Girl's favorite para had a brother with Down syndrome.  He wasn't allowed to go to school, suggesting he was born in the 1960s, when babies with Ds were still routinely institutionalized.  I wonder about his parents, who defied all social convention when they took him home.  I wonder how bittersweet it must have been for them when IDEA was enacted in 1975, 15(?) years too late.

I wonder if they feel a little twinge knowing their daughter spends her days enabling something their son never had.

1975 is the same year Gore-tex started their medical division.  I don't know when the survival rate for pediatric open heart surgery shifted from abysmal to only slightly terrifying, but 33 years later a tiny piece of rain jacket fixed the giant gaping hole in my daughter's heart.  Had she been born the same year I was, she would have died.

In 1982, relying on medical advice, an appellate court in Indiana allowed six day old Baby Doe to die.  Baby Doe had Down syndrome - a fact his parents found so abhorrent, rather than allow someone else to adopt him & fix a fairly routine medical issue, they withheld food and water till stomach acid ate his lungs.

I wonder about the parents who would have chewed off their own arm for corrective surgery but didn't have caring doctors or the right technology.  I imagine it would sting a little, seeing my girl running across the playground with only a faint scar on her chest to document fortune's grace, knowing their own child was just one decade or late night lab discovery shy of a full life.     

I attended the NDSC convention in June and marveled at the self congratulatory nature of it all.   There is still much work to be done - 5 minutes of Q&A about school inclusion is painful confirmation of this, & my pedicure lady at the hotel reminded me that children w/Ds in Serbia are still hidden away and shameful.  But in this country, today, we have dedicated professionals, best practices, and the full weight and force of federal law.  We have the ABLE act.  We have the internet and each other.  

And we have medical research.  

It's not uncommon to hear parents fervently swear they wouldn't change a thing about their child.  "She wouldn't be who she is without Down syndrome!"  I wonder how much of this is a reflexive reaction to  the trolls and naysayers - we become such fearsome advocates for our children we fear anything other than rainbow spewing giddiness will validate the eugenicists or scare a frightened expectant girl into a clinic.

I think this is the secular version of "special angels sent by God."  My child has a third copy of the 21st chromosome and we do not need to ascribe her otherworldly missions or insight to honor her place in this world.  That extra "love chromosome" (gag) dicked with her heart and landed her in the  PICU when she was 3 months old.  That extra coding dicks around with the chemicals and proteins in her brain and makes her neurons fire inefficiently.  This makes it hard for her to learn things and exceptionally difficult for her to express herself.  Assuming her soul would be any less fantastic if the chemical soup in her head processed language faster is tantamount to claiming she's awesome because she is slow.  It is as reductive and damaging as finding an amputee inspiring simply because they get out of bed in the morning.  My daughter is a fucking delight - not because she has Down syndrome, but because she is.  And it kills me that she cannot tell me her stories.

At the NDSC conference, as I heard about research into drugs that may quiet overactive proteins or activate sleepy neural pathways, I wondered about the doors we will never open. None of the research sounds remotely close to actual application and, just as I started to daydream about experimenting on my 7 year old, one of the researchers mentioned thalidomide.  Woe betide those that fuck with the delicate balance of the human body.

But I wonder if twenty or forty years from now Down syndrome will be medically treated, just like  diabetes or hypothyroidism.  I wonder if I will feel a little twinge in my sunset years, seeing stories about miracles of modern medicine, valedictorians with a little extra, or ivy leaguers.  I wonder if I will regret my caution, just as the little pills prove safe… just as I start watching for signs of Alzheimer's in my baby.  I wonder.