Monday, October 28, 2013

Our Living Icon

It’s 5:00 a.m. on a Saturday morning, and Nicky is shuffling into our bedroom. My wife has gotten less sleep than me, so I take Nick by the hand and we head downstairs.

“You get your newspaper, Papa,” Nick says, “and I’ll get a book.”

It’s our routine. I grab the paper from outside, scan the headlines, and await Nicky’s arrival with his chosen volume. As a father of seven, I don’t like to pass up opportunities for one-on-one time with my kids, especially Nick. He’s a five-year-old towhead with a mischievous grin and clear blue eyes. He likes Van Morrison and They Might Be Giants, The Wiggles and old Get Smart reruns. He has a great sense of humor, is quick to hug, loves to chase robins in the yard, and waves and smiles at total strangers.

Oh. And Nick has Down Syndrome.

Nick’s condition came as a surprise to us the day he was born—we usually avoid prenatal testing and ultrasounds. But once the midwife put Nick into Nancy’s arms, we could see the distinctive shape of his eyes and knew something was different—an observation confirmed by the midwife moments later.

As we sat on our bed, gazing at our newborn son, we were quiet, but it was a quiet borne of reflection, not grief. His physical condition meant nothing to us with regards to his inherent worth and dignity, with regards to his identity as our son. Those things were a given.

The Down Syndrome did, however, open up an entirely new spectrum of parenting for us. Nick has five older siblings, but he is our first child with special needs. And although I’m a nurse and a nursing instructor, at that point I had little experience with Down’s, so I knew we had some learning to do and some extra challenges ahead of us.

The first challenge came the very day Nick was born. Down Syndrome (DS) is a chromosomal anomaly that is associated with a variety of health problems, including congenital heart defects, so our midwife urged us to get Nick checked out immediately. We took her advice, and instead of Nancy and baby luxuriating together for a couple days, we all had to jump into the van and head over to the doctor for our son’s first exam. This was a disruption to our normal post-partum routine, to be sure, but no big deal.

The greater challenge came later, at the conclusion of the doctor’s examination. He said that, yes, Nick’s physical features were consistent with a Down’s diagnosis, although only a blood test could confirm it, and, yes, Nick should get an echocardiogram that day to rule out serious heart problems. But then he got very serious and made vague references to our “options” regarding our family and Nick’s future.

Our options? What, institutionalize him? Put him up for adoption? We were shocked—this was a Catholic doctor we were dealing with! Instead of encouraging us as parents of a newborn with special needs, he was almost apologetic. The unknowns associated with DS notwithstanding, we were giddy God had blessed us with Nick and excited about this new addition to our family. The Down’s didn’t define him then, nor does it now. Nicky is just one of the gang—with special needs, to be sure, but no less loved or valued. The doctor’s ambivalence about Nick confused us, even scared us a bit.

Turns out, we were right to be a little scared, for the world at large has little use for Nick. His very existence is considered by many to be a mistake, even an outright offense. Our society, you see, does in fact define Nicholas in terms of his Down’s, particularly the accompanying physical problems and developmental delays. So, to the world Nick is a problem that we could have easily dispensed with before he was born.

Babies diagnosed prenatally with DS are routinely aborted in the US today, with estimates running as high as 90%. In other parts of the world, the rate is even higher, and some predict the complete eradication of DS babies thanks to improved prenatal diagnosis and legal abortion. These statistical realities send a message loud and clear to families with Down’s children: You messed up when you brought your child into the world.

It’s a message both infuriating and depressing to those of us who know such children as glorious Imago Dei’s. We like to think of Nick as our little living icon—a window into the heart of God—and a reminder that we’re not put here on earth primarily to be productive, but to love and be loved.

A version of this story appeared on the University of Notre Dame Alumni Association's FaithND website. It is excerpted from a longer essay, “When Healers are Expected to Kill,” which appeared in the spring 2009 issue of The Sign of Peace, Catholic Peace Fellowship.

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