World Down Syndrome Day: My Thirty Year Perspective

I did not invite Down syndrome into my life; it crashed my party. In that devastating moment when my hopes and dreams for my newborn daughter were ripped away, I couldn’t imagine anything could be worse. Fast forward thirty years, and hindsight, as it often does, has replaced the pain and fear I felt in those early days after Stephanie was born with appreciation for an amazing journey that with all its challenges and flaws has made us a stronger family and me a better person.

Today is World Down Syndrome Day and I suspect the average person woke up this morning not knowing that; I certainly had no idea. It might sound odd, but we’ve never been big on waving the DS flag and observances such as this haven’t been high on my priority list. In the weeks after Stephanie was born, Tim and I came to terms with our new reality and made a vow that she would live in our world, be an equal part of our family, and we would not be pulled into a Down syndrome centric life. Simply put, we threw out the label and she was welcomed as a daughter, little sister, granddaughter and niece by a family that adored her, supported her aspirations and celebrated her accomplishments. We navigated each situation in her life as you would do with any child; accentuating and encouraging her talents and helping her compensate for her challenges.  And as we’re busy planning her thirtieth birthday bash in New York City, I can say it’s been an approach that worked well for us.

But as I watched a BBC news report early this morning on special events commemorating the day in the UK, I recognized how the efforts of others to raise awareness and advocate for rights and inclusion have paved the way for many of Stephanie’s successes. I feel a little guilty for how little we’ve contributed to the greater DS community and so the sentiment behind this post is a heartfelt thank you to all of those who have done so much to improve life for Stephanie and others like her. Medical advances have greatly extended their life expectancy and the world is certainly a kinder, gentler place for a Down syndrome child born today than in generations past. But sadly, just as it was thirty years ago, 1 in 800 mothers will still get the same shocking news I did on a day that is supposed to be one of her happiest; 1 in 800 families will still have their lives turned upside down by that extra chromosome.

Over the years, I’ve talked with many parents and grandparents in this dreadful situation and my message is usually the same. The grief they’re feeling is real and they should allow themselves to mourn the loss of the life they dreamed of for their child. The ironic thing is, even parents of supposedly normal kids often discover that their children’s lives unfold differently than they had hoped; sometimes for the better, but often not. But the difference is most parents aren’t forced to confront that disappointment the moment their child is born.

Once a little time passed and they absorb the blow, I suggest they look around; as bad as they think things are, it could always be worse. We spent eight weeks in neonatal intensive care after Steph was born and my eyes were quickly opened to how many sick babies were born every day. I had been so naïve to assume that if I did everything right, my baby was sure to be healthy. My heart broke a little more each time an ailing newborn was rolled in; too many with little chance of survival. During those weeks in the NICU it was the infants with unknown genetic maladies that in a strange way made me feel fortunate. Down syndrome was the Cadillac of genetic disorders. Steph’s condition was well understood and documented, and her medical issues were all treatable. Unlike some of the other babies around her, she would be going home and her life, while different than I had imagined, would likely be happy and productive. At first this was little consolation, but in time I gained comfort from knowing our worst days were probably behind us.

But the thing I’ve shared most with these families is the lesson I learned from our son, Chris. He was just shy of three when Stephanie was born and he obviously had no concept of what Down syndrome was. The notion of developmental delays or limitations were beyond his comprehension, so assuming she could learn anything he just went about being a big brother. Always looking out for her, inclusion was not some catchy buzz word, it was just what he did. As they grew up, Steph tagged along with him and his friends, learning to play baseball and basketball, or whatever they were into at the time. Truth is, she still does; there’s never been a time in her life when she didn’t benefit from being part of her big brother’s posse. Regardless of how long it took for her to master a task, he never gave up on her. It was from him, a toddler himself, that I learned the patience that didn’t come naturally to me, but that I would need for the rest of our lives.

It would be disingenuous of me to deny that there have been some extraordinary challenges along the way. But trying times aren’t reserved for parents of Down syndrome kids; devastating things happen to families every day. And let’s face it, even our most “perfect” children can make us question the sanity of our decision to become parents in the first place. But for the lucky among us, those difficult moments pass and over a lifetime it’s the joys that float to the surface.

I usually end by telling them that raising a child with Down syndrome is like taking the scenic route; the road is less familiar and it takes a little longer, but the incredible things you discover along the way are priceless.