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Learning to Celebrate Small Moments Because of My Son With Down Syndrome

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I’ve always thought, “Live in the moment!” was a garbage philosophy. As pretty as that may look stitched on a pillow, some moments suck. Among them: all of the blood draws for my son’s immune deficiency, or the dozens of painful ear infections he’s had courtesy of tiny, twisty little ear canals. Or all of the pre-surgery hand-offs to a parade of anesthesiologists over the years. My son has spent far too many of his moments in emergency rooms and doctors’ offices, and we’ve all gritted our teeth through some rough behavioral patches, too. It’s much easier to “live in the moment” when that moment comes equipped with a beach and a margarita.

But the older and tougher I get, courtesy of some of the crappy moments, the more I realize there are plenty of moments to celebrate.  Among those:

My son figuring out, at age 7 or so, there are people working in the cooler room behind the wall of milk at Kroger. He started talking to those people as I grabbed the gallons we needed.

Son: “Hey man, guess what?”
Surprised milk room guy: “Uh, what?”
Son: “Monkey butt!! Hahaha!!”

When I walk the dog alone, I listen to music and walk fast. But when my son comes with me, the earbuds stay home. My son walks the neighborhood like a mayoral candidate the day before an election, greeting all of the neighbors and their dogs, too. People who wouldn’t give me a second look when I’m walking alone cross the street to talk to my kid and high-five him. For a while there, his favorite opening gambit was, “Hey man! Cool shirt!” It works on everyone, from other kids to older ladies, should you need an ice-breaker.

Even a haircut can be entertaining. My son got one this morning, and as the stylist was finishing up with the clippers, his favorite song came on over the speakers, “Whatever It Takes,” by Imagine Dragons. Because my son doesn’t do anything halfway, he pulled off the black plastic cape and climbed out of the chair to dance. Mercifully, for his tween brother, it was just us and the stylists at that point, because not everyone appreciates solid Gold-style entertainment at Great Clips.

Patience has never been my strong suit, but in some very real ways, my kid and this Down syndrome diagnosis have helped me build that muscle. And his enormous personality and sheer determination to wring joy out of life, despite the rough moments, is helping me see more of them, too. Of course, a margarita bar in the ENT waiting room would also be magical.

Originally published: March 19, 2018
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