My wife Charlotte and I recently attended the National Down Syndrome Conference. Each year, people in the Down syndrome community across the country gather in a different city in the United States. This year we celebrated in Sacramento, CA. I say ‘celebrated’ because this is truly what happens during events like these. Parents, grandparents, siblings and relatives come to support a family member who has Down syndrome. Care-providers learn valuable teaching strategies that will make a difference in the lives of those with Down syndrome. Everyone shares resources they have collected over years of working with schools, healthcare providers and government agencies in the hope that another’s journey through these institutions can be made just a bit easier. Charlotte is the Executive Director of The Down Syndrome-Autism Connection, a national organization dedicated to supporting families raising children with the co-occurring diagnosis of Down syndrome and Autism Spectrum Disorder. I work on the convention floor with a few other dads and meet people.
But the real heroes, the reason we celebrate, are the individuals with Down syndrome themselves. This is their conference. This is their time to shine. And oh boy, do they! Wide-eyed babies melt everyone’s hearts. Toddlers manage to get their hands into everything. Teens hang out together in packs. Young adults in the early throws of romantic love hold hands as they pass by our booth. We even have our share of celebrities – three of the cast members of the popular cable show ‘Born This Way’ which follows the lives of adults with Down syndrome were present with their families. And they all are as full of life and charming in person as they are on the show.
When Charlotte and I first decided we were going to have Jacob, we were scared. Jacob was just nineteen weeks gestation and neither of us had any close contact with anyone with any kind of developmental delay. We knew people in our community and our church. We had friends and relatives who had children with Down syndrome. None of these relationships made us believe we were ready to raise Jacob. What is it like being a parent of a child with Down syndrome?
And then we met Noah.
Charlotte was introduced to a friend of a friend who lived no more than a mile from us. She and her husband had three boys. The youngest, Noah, was born with Down syndrome. Nearly a week after learning the news about Jacob, we found ourselves sitting on the couch in their living room. With three boys all under the age seven, controlled chaos was the unspoken rule of the house.
I guess I don’t know exactly what I expected when I met Noah. I do know I was surprised. Here was a vibrant, active, happy two-and-a-half-year-old boy proudly showing me every toy he owned. He grabbed my hand and invited me on the floor to play. His smile was infectious. His joy was brighter than I could have ever imagined. He more than kept up with his brothers as they chased each other and wrestled. He was wonderful. He was beautiful. He was perfect. And I knew at that exact moment I would be more than ready to be Jacob’s dad.
Weeks went by, and one of my oldest and dearest friends invited me out for drinks. As good friends do, we check on one another. If you are dealing with difficult times, you can be sure someone from the old gang will see how you are doing. My friend Dennis and I ordered drinks and shared a little small talk before we broke into more serious conversation.
“So, how are you doing, Bill?” Dennis asked.
“Charlotte and I are holding it together, I think,” I answered. I knew I had deflected his question. Dennis, being a good friend, would have nothing of it.
“No, how are YOU doing?” he asked me again. I knew he was serious. I knew he really cared.
I took a sip of my beer and looked him in the eye. “I’ve learned something, Dennis,” I answered.
“What?” he asked. His expression was one of concern. It meant a great deal to me for him to listen.
I peered down at my glass, swirling the amber liquid. I took a deep breath and asked my friend, “Have you ever met a person with Down syndrome who was a jerk?”
Dennis blinked for a moment, caught off-guard I believe by the thought. He pondered the question in his mind. I don’t know if he had ever thought of it in such a way. Honestly, I don’t know anyone who has. He looked at me and smiled.
“You know we don’t get any guarantees in life. Jacob could be born perfectly fine only to find out he has some other health issue down the road. He could get into an accident and become handicapped. Or he could even just be a jerk.
“But every person with Down syndrome I’ve met, every single one of them, has so much joy. It’s incredible.” I took another sip of my beer. “Yeah, we got a lot of the tough news up front. But that part about the joy, does that sound like a bad thing to be around?”
“No,” Dennis admitted. “I guess it doesn’t.” Dennis looked at me in the eye. “You know what, Bill?”
Dennis smiled again as he lifted his glass. “I think you’re going to be just fine.”
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