Other Awareness this Month

While I complain, year after year, about too much October attention, sometimes I feel like a greedy diva.  There are causes and people behind them who would love a national platform like breast cancer gets.  Sure, the attention breast cancer gets in problematic, but fact is, we have a platform.  Here today, on my humble platform, I'm turning the keyboard over to my good friend Kathy.  Her son Drew has Down Syndrome, which also claims October for awareness month.  I knew precious little about Down Syndrome until I met Kathy.  Her fierce, passionate, and intelligent advocacy could make those Sarah Palin Grizzly Moms run away with their tails between their legs.  And Drew - I've been lucky enough to meet him too.  He's one lively and joy-filled child.  The best word I can use to describe him is pure.  So without further ado.... I introduce Kathy (words) and Drew (pictures).

Baby Drew

A few years ago, when my son was four, he took a swimming class. His teacher wanted to make the kids comfortable in the pool so she filled a pitcher with water and handed it to each child. The first little girl sprinkled it over her arms and giggled. The next boy was brave and splashed his face. More giggles. Then it was Drew's turn. I knew what the teacher was seeing: His guileless blue eyes and sweet smile as she handed him the pitcher. Drew put it down on the side of the pool, carefully stood up, and with a grin, dumped it over the teacher's head. Fortunately, she laughed, and seemed to realize that she'd been suckered by those big blue eyes and yes, by his diagnosis. She's not the first to underestimate him and won't be the last.

We didn't know Drew had Down syndrome until he was born. He was struggling to breathe as they rushed him out of the OR and into the NICU. On the way out, the nurse practitioner leaned over me and said, "I think he has Down syndrome. There are a few soft markers," and my whole world changed. The first few days were terrifying. We learned our baby had pulmonary hypertension and a heart defect. I made many late-night bargains with God in the NICU, promising all manner of things if only my son would be healthy. But waiting simultaneously for echocardiogram results and karyotype results to confirm Trisomy 21 put things in perspective for us. Finding out his heart defect was minor and wouldn't require surgery was like a thousand Christmas mornings. Hearing that he did, indeed, have DS didn't seem like the end of the world anymore.

First day of kindergarten!

While it'd be great to say it's been smooth sailing ever since, it hasn't. Some days are hard. There have been too many illnesses, too many surgeries and too many little heartaches along the way to call it "easy". But every day, Drew brings us joy, and shows us again what a tenacious, funny and smart boy he is. As a parent mentor in the Down Syndrome Association promised, "It'll be a hell of a lot of work, but a hell of a lot of fun, too."

October is Down Syndrome Awareness Month. Now, people with Down syndrome are just as different as people without it, so I wouldn't presume to make any blanket statements, other than to tell you that as a group, they are achieving amazing things. There are people with DS in college, working full-time, getting married, and volunteering in their communities. They are much more like you than you might imagine, unless you have the good fortune of loving someone with DS. Drew teaches me something new every day. A few weeks ago, for example, I learned that if you throw a Spiderman shoe out a school bus window at just the right moment and angle on Galbraith Road, you can hit the Red Lobster parking lot below. And there are bigger lessons, too. He's taught me about perseverance, and that achieving a goal after months of work is much sweeter than achieving it quickly. He's taught me about compassion and sensitivity. He's also taught me about patience, maybe the hardest lesson of all for an intrinsically impatient woman. I can't imagine life without him, and wouldn't change a hair on his beautiful little head. He's just as he should be. And maybe that's what I most want people to understand, this Down Syndrome Awareness Month.