It took us almost ten years to understand the wisdom in the title of the TV series “Life Goes On.” Our son Nick had not been born when the show was a viewer favorite, and we did not get to know Corky, Chris Burke’s character with Down syndrome, when it first aired. Had we been part of the original audience, we suspect we would have better understood that, for families affected by Down syndrome, life goes on. And indeed for us it has.
We were speaking with our 13 year old daughter Lauren about Down syndrome recently, and she summed up our family experience pretty well: “I’ve known [Nick] his whole life, and Down syndrome is not new to me. He is just my brother.” When asked if she learned any lessons watching him grow up she replied, “I know some things are harder for him, but he’s just a regular kid.”
We have known and loved our regular kid for a decade. We’ve grown past fear over the diagnosis of “Down syndrome” to recognize it for what it is – a label that defines his genetic condition, not him. We’ve stopped identifying difficult behaviors as “Down syndrome moments” and started accepting them simply as part of Nick’s childhood. We’ve matured from viewing Down syndrome as something in him that was broken, into seeing Nick as someone whole, strong-willed and captivating. We’ve had the opportunity both to teach and learn from Nick. While we teach him how to survive into day’s fast-paced competitive world, he teaches us that life isn’t all about being first, best, or most powerful. It is really more about the rewards and joy that flow from loving each other. At the end of the day, he is right.
Our life goes on… and it truly is much better for the opportunity to know and love Nick. Does Nick’s Down syndrome present challenges? Certainly. But with those challenges come moments of unparalleled perspective and bliss.
Thank you for joining us tonight as we celebrate people with Down syndrome. We hope you enjoy this evening as much as we will.
William and Dana Halle