Why I’m Celebrating the Little Moments on This Big Day for Down Syndrome
It has been suggested that we not sweat the small stuff. I find it is not good advice. Life is the small stuff. Especially for our kids born with Down syndrome. The first tentative turn of the pedal on the two-wheeled bike. Spelling correctly the first of the eight words on the third-grade list. Watching Jillian Daugherty emerge from the dressing room, auditioning the first potential wedding gown.
Sweat the small stuff, folks. Cry about it, laugh with it, linger on its simple wonder. Love it for everything it holds. The big moments are icing, compared with all the little triumphs that enable them.
Today is World Down Syndrome Day. It’s a big moment. An instant for us to brag and to celebrate the special miracle of our children. We are a lucky bunch, privileged to witness the love, empathy and perspective that our kids offer up every day, without even trying. Of course they’re special.
But it’s fleeting. Today people will pause, however briefly, to acknowledge a segment of the population too often overlooked. Then they will get on with their days.
Every day should be Down Syndrome Day. Every day, people with Down syndrome should be respected. Their voices should be heard, their little wins validated, their challenges recognized. If you want to give them a day, give them a job. Give them your time and honest attention. See them, don’t look at them.
Make it so a Day is no longer necessary.
That would be quite a day.
Jillian Daugherty’s best moments have never been her biggest moments, because by the time the big moments arrived, their appearance was assumed, their conclusion foregone. It wasn’t that they weren’t transcendent. To watch your child walk the aisles of graduation and marriage is to experience every hue in the human emotional rainbow. But by the time they occurred, we knew they would.
Kerry and I cried proudly a million times, but not once on a graduation day or during a prom-dress fitting. We cried when a boy on Jillian’s soccer team, Ryan Mavriplis, asked her to the homecoming dance. It happened at practice. We cried as we watched Jillian run across the field, shouting, “I have a date! I have a date!’’
I cried the morning my 6th-grade daughter informed me she no longer required my presence with her at the bus stop. (“I’m not your little girl anymore, Dad.’’) Not when that 6th-grader moved to her own apartment, eight years later.
On the spring day when 60-pound Jillian first climbed aboard the bicycle seat, I cried. I knew she was about to try something special, and her courage moved me. Two months later, as she pedaled down the lane and into a new world of adventures, I pumped my fist, tearless.
The achieving is wonderful. It doesn’t evoke the emotion that the trying does. Jillian’s fearlessness made me cry. Her guts provoked waterfalls.
Tales of her everyday kindness got to me: Giving up her seat on the Metro bus to an elderly woman, as both rode to work. Her unflagging ability to ask about everyone in our family:
“How’s your dad’s back? How are grandmother’s knees?”
Years after family members pass, Jillian remembers them: “I still miss my Uncle Pete.’’
The little triumphs of effort and diligence, kindness and empathy, got me every time. The big moments that resulted of all that collective Jillian-ness? Well, they impressed me and made me proud. But they didn’t have me blowing my nose.
What does this have to do with World Down Syndrome Day? If you’re like me, you think every day should be World Down Syndrome Day. And you wish everyone else felt the same way. Celebrate Down syndrome by embracing it. The little moments are always the best.
Paul Daugherty is the author of “An Uncomplicated Life,” a memoir of raising Jillian. It’s available on Amazon.com and on Paul’s website, uncomplicated.life.
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