Category Archives: Down syndrome

post-op

Surgery has become an ordinary thing in modern times, especially the surgery my son had this week, but there’s brutality lurking behind the banal :

I handed him over to be cut. I gave him up, for a short time, to doctors and nurses, and he suffered. Continues to suffer. We as parents calculate the odds, percentages swirling, chance of benefit, risk ratios, but it doesn’t really matter, because for us caregivers, reality bleeds and blunts to black and white. Surgery will either help, or it won’t. There will be complications, or not.

None of us can escape pain in life, yet the insistent pulse of motherhood drums into our bodies and brains to try, try, try to shelter our children from it, or at least fend it off as long as possible. These instincts run deep. What miracle is this that allows a relaxing of our clutching, clawed fists? That gives us strength to our head high while we hand over our kids, hands slightly tremulous? We inform in solemn whispers that they will open their bodies to medicine, we plead for the doctors to injure them so that our babies may be well, to inflict pain so our kids may prosper. Even agnostics like myself feel a strange faith in these moments, one that helps us kiss and sigh and let go.

For my son, surgery was a success. He continues to heal but he is no longer on oxygen. Proof of benefit, the ends justifying the means, or so it seems.

I try to exhale.

a different narrative

When I found out that my baby would almost certainly be born with Down syndrome, there was a range of responses from my friends, family and coworkers, many of them centered around concerns of (dis)ability:

  • “There’s an incredible dance troupe of people with Down syndrome – watch it on You Tube!”
  • “I hear kids with Downs can go to college these days.”
  • “Did you see the news article about a model with Down syndrome?”

During pregnancy I began participating in online forums for mothers of kids with Down syndrome. There is even more celebration of achievements and accomplishments within our community. And there has been much to celebrate in recent years: people with Down syndrome starring in movies, completing full Ironman triathalons, enjoying college and marriage and leading fulfilling lives as spokespersons and advocates. Moms of young kids with Down syndrome flood social media with the videos of milestone accomplishments: walking, talking, eating solids with a fork.  The messaging is clear: people with Down syndrome can and do achieve big things.

I cried when Chris Nikic completed his triathalon and my heart warmed watching Zack Gottsagen in the Peanut Butter Falcon. These people with Down syndrome are incredible, extraordinary.  They have earned every ounce of admiration they recieve and more.

We live in a culture hyper-focused on ability and the illusion of independence. There’s a natural conclusion, therefore, that individuals with Down syndrome who are most capable of performance, most “like,” are elevated. The more dependent or disabled ones are not. I wish to celebrate achievement but fundamentally, I don’t want to be part of this narrative unless it can also celebrate something else- the worth of all lives.

(A surprising turn for a woman who spent her college years working at an abortion clinic)

Many kids with Down syndrome are born very healthy. There are many too that face challenges in infancy but seem to turn a corner after a year or two and go on to live relatively healthy lives. I’m waiting for my son to turn the proverbial corner. I’ve started to doubt if the corner exists at all, for him. At age 22 months, my son is not walking, not crawling, not sitting, not babbling. He is medically complex and has spent most of his short life in and out of hospital settings. We are not the heroes of anyone’s social media news feed. His achievements can be uncovered in very most basic domains: breathing. Eating. Surviving.

Yet his worth does not depend on his ability to walk or talk. His value does not hinge on his future success or failures. He is perfect as he is. I chant this truth under my breath every day, as I move through spaces literal and virtual that suggest otherwise. It has become a prayer for me, a mantra that dissolves the illusive messaging on ability and worth that excludes so many.  

He is perfect

He is worthy.

He is a miracle.

This is countercultural, you see. A dependent child, with (now patched) holes in his heart, airway problems, requiring so much medical care, so much help to simply to live- we are told this is inferior, tragic even.

NICU snoozes

He shows us another way; he continues to teach me these greater truths on a daily basis. Is that heroic? I don’t know. But it is invaluable.