Moments Like This Make Me Forget the Fear I Had When We Got the Down Syndrome Diagnosis


CRdadBeachprofile2 For many new parents of a child with Down Syndrome, it’s far too easy to focus on the diagnosis and the challenges. It’s far to difficult to imagine the wonderfully rewarding and simple everyday stuff that actually makes up the bulk of our lives.

But over time, the looming enormity of the diagnosis begins to give way to the unveiling of the character, personality, quirks and needs of the child behind the label. Your emphasis on the big, bad diagnosis and fears of the known/unknown are slowly replaced, until finally you get back to where you were supposed to be: thinking of your child as a child, not as a disabled child. You learn more and more about the uniqueness and capabilities of the real child and care less and less about the larger world’s stereotypes and emphasis on perceived disability over actual ability.

So, with that in mind, even though in 1994 I couldn’t have imagined it any better, here’s a bit of what happened yesterday…

Connor, who will turn 6 in July, started my day off on a bright and sweet note by saying to me, with a charitably reassuring tone, “Daddy, you are so handsome! You are a handsome boy!” Now, he said this to me even though I’m neither, and I had a mean case of bed head, was bleary-eyed and unshaven, and had a bandage covering a scrape on my nose. He kept saying, “I’m sorry, Daddy, let me kiss!” offering to peck my nose.

During breakfast he recapped his school day, when he’d been class leader in his a.m. kindergarten class. The leader has a variety of responsibilities: reading the daily plan out loud, counting the boys and girls in attendance, checking the weather outside and setting the weather wheel display appropriately, leading the class in the Pledge of Allegiance and then leading the line of kids to and from the playground. I asked how many friends were in class, and he told me “Eleven boys, eight girls. Nineteen friends!” And then he put his hand over his heart and recited the Pledge of Allegiance for me, something he’s done for months now. It amazes me and brings me to tears each time.

Later, we were doing yard work, turning over and mulching the garden beds. We were having a great time inspecting worms, whistling back at the birds, spreading mulch and generally getting pretty dirty. At one point he said, “My hands are yucky! Dad, show me your hands!” I did and he said, “Hey, you’ve got yucky hands, too!” So we laughed at our yucky, yucky hands and kept an eye out for more big, fat worms to pick up and let tickle our palms.

In the evening, as dinner wound down and it was time to go up for a bath, my tired and self-satisfied boy slid down from his chair, grabbed his dessert bowl and spoon to take over to the sink (unprompted!), turned, stopped in front of me, got that glint in his eye and said slowly, clearly and dramatically, “Daddy…you…are…my…best…friend!”

CRBTmighty It was a wonderful day to be a dad, to be his dad.

It’s in such stunningly simple and precious moments like those that the pain and significance of many past fears and struggles simply melt away. We don’t know what lies ahead for us, but the power and promise of that kind of love keeps me going even when I feel overwhelmed by self-doubts about my abilities to be the kind of man and father he needs and deserves.

New parents — and particularly new dads — need to realize that while they can’t make the Down syndrome go away, there’s still an infinite amount of good they can do in their child’s life. There’s tremendous success and deep satisfaction to be found in helping their child realize his or her own potential. There’s no achievement in work or business that will ever match the pride and joy I feel when Connor achieves something new.

While I still may struggle a bit to redefine my measures of success in this world, this society, this life, one thing I know for sure is that I’m making a difference in his life, and it’s the most important thing I have ever done or ever will.

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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