Tonawanda News

September 27, 2012

Stepping it up after all these years

The Tonawanda News

Tonawanda News — Eight years.

It’s hard to believe. Eight years ago, my husband and I were just moving into our new home in the Town of Tonawanda. Eight years ago, I was nearly eight months pregnant. Eight years ago, we were counting down the days to becoming parents for the very first time.

And we were scared to death.

Oh, not for the usual reasons new parents-to-be are scared. (Although those reasons were there, too.) We had an added element of fear and trepidation and constant background worry. About four months earlier, you see, our son had been diagnosed in-utero with a heart defect. And when he underwent testing to clarify why that defect might possibly be there, we found out something else.

Our son, the baby we hoped for, dreamed of, had given silly nicknames since the day we found out he was on his way ... our son had Down Syndrome.

I won’t tell you we were strong the whole way. I dealt with my share of rage and panic those days, and I will never forget the sheer, overwhelming pressure of the unknown. What would this be like? Facing down new parenthood is scary enough. Facing down new parenthood when you’re just not sure what’s coming ... is petrifying.

Would he walk? Would he talk? Would he love us? Would he show it? Would he like the things so-called “normal” kids like? 

So many questions. So much unknown.

And yet, today, nearly eight years later ... here we are. 

Jim is a healthy, happy kid. (Thanks to successful heart surgery when he was 5 months old.) He loves school. He loves swimming. He loves to bait his little brother, who doesn’t have Down Syndrome but still thinks his older brother hung the moon. (Most of the time, anyway.) Does he talk? He never stops!

Do you know that I forget at times? I don’t look at him and think “My son has Down Syndrome.” I look at him and think, “Dude, if you whack your brother one more time, you’re cooling your heels in your room for a while” or “Where on earth did you get those gorgeous blue eyes, kid?”

And I hope that when other people look at him, they see the same thing. The differences, because they’re there ... but also the similarities.

This Saturday, we’ll be walking with hundreds of other families like ours as part of the Step Up For Down Syndrome Walk from 11 a.m. to 2 p.m. at Coca-Cola Field, Buffalo. The event — like the Niagara County Buddy Walk (which to our sorrow we had to miss this year for the first time since 2007) — aims to celebrate the diversity of Western New York and the lives of kids like Jim and the adults they’ll become. 

And the families who love them.

We’re not looking for accolades for what we do. We’re just living our lives. We’re not looking for special honors, and we’re sure as heck not looking for pity. 

But we’re here to say that we’re part of the community ... and that while the unknown can be frightening, sometimes it’s not bad. 

And sometimes, in a different way, it’s every bit as good than the “known” you were expecting.

For more information on the Step Up walk, visit or call the Down Syndrome Parents Group of Western New York at 832-9334.

Jill Keppeler is a writer for the Tonawanda News. She can be reached at