This essay was first published in the Op Ed section of The Tennessean newspaper in September of 2006. I wrote it in response to a news story reporting a decline of births of Down syndrome babies due to prenatal testing that led to terminated pregnancies. I wanted expecting parents to know what they might be missing.
I am not a medical ethicist or an activist for the disabled. I am a father of a son with Down syndrome. Since the birth of my son, and the September 3rd article about the decline in birth rates of babies with Down syndrome, it has been 4249 days. It has been that many days since our family received the news and made the assumption that our third child and first son would bring us years of hardship and challenges because he came to us with that extra chromosome on what should have been the twenty-first pair. We probably cried that many tears upon hearing the news. But I have also learned at least that many lessons in life and love from my son in the almost 12 years he has graced our lives with his presence. Let me share just a few of them with you.
“I’m sick of you, I’m sick of this trip, and I’m sick of Aunt Edna!” That quote from Chevy Chase’s “Vacation” movie was delivered by Matt while he was standing in our kitchen, having a particularly frustrating day. It brought peals of laughter from Mom, Dad and his teenage sister. It is one of many pieces of internalized movie dialogue Matt will deliver at the most appropriate time in either English or French (since he enjoys interchanging the language and subtitles on the DVD’s he watches).
He came home from school last week (he is a main-streamed fifth grader) “on strike” because he was skipping down the hall. I noticed one time that Matt also skipped down the sidewalk into school every morning after he got out of the car. I have wondered many times, while observing him, why none of the other children were skipping and how old one must be to be “too old” to skip? Can you imagine how much better place the world would be if the U.S. Congress was required to hold hands and skip around the Capitol each day before they began their sessions?
When he was about five years old he called me over to the kitchen table, where he was eating his Rice Krispies, and asked me to “listen.” I bent down and positioned my ear near the bowl and exclaimed, “Wow, Matt! What do you hear?” Expecting the reply of “Snap, Crackle, Pop,” I was humbled to hear his incredible insight: “It’s raining in my cereal.” Listen to a bowl of Rice Krispies some time and then listen to the rain beat against your windshield in the car in a rain storm. You will be amazed.
Within hours of his birth I wrote in my journal: “I am able to hide all of my imperfections behind the façade of my relatively normal brain and body. Matt’s imperfections just hang out there for the world to see. I wonder which of us is worse off?”
Yes, there are challenges, and questions about the future and our life is changed because we have a special needs child. If I could choose now to have Matt “normal” or with Down syndrome, I would choose to have him just the way he is. He may have “less” than typically developing children in some areas, but he has so many talents, so much sensitivity to the world around him, and brings more gifts to our life than some “brilliant” adults I know. This letter may not change the course of the trend in possible terminated pregnancies, but if just one expecting parent reads it and says “yes” to bringing another child like Matt into the world I will be 4249 times grateful – and so will they!