Canadian Down Syndrome Society

Day One: A Family's Journey

We recently found an old newsletter article written by Nicholas' mom, Elizabeth, in 1992. Click the images below to read the original article and an update from Elizabeth.

"Nicholas did what babies do best. He simply took over: needing to be fed, changed, cuddled and loved ... and letting us know if he was lacking in any of those departments."

"I am happy to say the human race is stepping up and scoring big points on the "Nick-scale". He's an easy guy to like and help. I think he creates opportunities for himself, and others, every day."

1992: The Year of "Everything's Possible"

It will always be 1992 in our house. Well, at least in one room of our house. On the south wall of our older son's room hangs a calendar with the mug shots of the twelve most adorable babies in Canada, according to Johnson & Johnson, Inc. One of the little cherubs hamming it up for the camera (in a pose that's now rare) is our son, Nicholas.

The day Nicholas was born was the most intense of our lives. At one moment, we were filled with joy and wonder, looking at the small miracle we'd brought into the world. Moments later, we were plunged into despair. I didn't think I had expectations for our first-born. After all, I hadn't pre-enrolled him at Harvard .... I hadn't planned for him to be an astronaut, or a brain surgeon .... but neither had I planned for him to have Down syndrome.

In those first few, hard hours, we were filled with a sadness so profound, it was frightening. We wondered if we'd ever laugh again. Thinking of that now, perhaps a million laughs later, we laugh once more, gently and knowingly.

Nicholas did what babies do best. He simply took over: needing to be fed, changed, cuddled and loved ... and letting us know if he was lacking in any of those departments. We were accepted into an Early Childhood Intervention Program (and what those wonderful people have given us would fill volumes!). Our families and friends let us know, in word and deed, that they were there for us .... and so the healing began.

When we saw the news release announcing the Johnson & Johnson photo contest, we honestly didn't think twice.

We looked through our photographs of Nicholas (and there are hundreds), and chose three we felt were suitably "adorable". The judges at Johnson & Johnson apparently thought so, too. Two of our photos made the first cut, with the eventual favourite being a pose we affectionately call "Fish-Lips".

Of eleven thousand entries, Nicholas became one of the twelve most adorable babies in the country. Not only did his photograph appear on the 1992 calendar, but he like the others, received a ten thousand dollar savings bond. Winning the money was great (who wouldn't accept a little financial security?) but the real "prize" was simply being chosen. Nicholas was one of a dozen "Adorable Babies", one of thousands considered, and none of the criteria included the presence, or absence, of a handicap. Nicholas was just a cute kid with a catchy slogan. All parents want one thing for their children: that they be able to get along in this world on their own. It doesn't seem like much, but just ask any parent who's had to consider that such a goal might be out of reach. Some of our worst fears came from knowing we wouldn't always be there to help Nicholas or protect him. When Johnson & Johnson chose Nicholas at ''face value", it struck us that this company reflected Society as a whole, and perhaps the world was truly becoming a kinder place for all our children. It gave us the certainty that Nicholas would not only survive, but triumph. We realized that attitude is everything and, with the right attitude, everything's possible.

Epilogue. Sixteen years later, the year 2008: Nicholas and I are having an old argument.... one that I'm losing.

"But Mom, it only makes sense for me to get an apartment close to work. I'll be O.K. Trust me. Could this Adorable Baby lie to you?"

He's right. He is adorable .... and he will be O.K. And, anytime I have doubts, I have only to go to the room where it's still1992: the first year of "Everything's Possible" .

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2012: An Update

When I sent my family the news that Nicholas would be the "face" of the NDSAW 2012 billboard campaign, one of my sisters, Mary, commented that it seemed fitting since Nick started his life as a photo model. I had almost forgotten: Nicholas was one of twelve winners of an "Adorable Babies" calendar and contest sponsored by Johnson & Johnson, twenty years ago. And I'd written about our experience for the Canadian Down Syndrome Society. So, I thought I should go back and re-read what I'd written in 1992.

Goosebumps: that would be a good word. When I wrote that article, twenty years ago, I ended it with a "glimpse of the future" where Nicholas and I were arguing about his having an apartment nearer to his workplace. It turns out I was a little off in the timing; in the article, the argument takes place sixteen years into the future, in 2008. Nicholas doesn't have his apartment yet, but he does have a job at SaskTel. He is in a workplace that values him, with colleagues who give him the support he needs to develop into an even better employee and person. He has hours; he has paycheques; he has benefits! (I could go on, but that's another article...) And Greg and I are working on getting Nick his own apartment. How did we know, in 1992, that all this would come to pass? (More importantly, why didn't I use my powers on picking winning lottery tickets?)

What I take from re-reading this article and comparing it to our present lives is this: we have more power than we know, when it comes to determining our, and our children's, futures. As young parents, Greg and I realized that people would take their cues from us. If we behaved as though having a baby with Down syndrome were the end of the world, then people would react as if Nick's birth were a tragedy; if we focused, instead on the positives and possibilities, then others would respond to our energy and allow themselves to see the possibilities, and create new ones. We often say that Nicholas is a walking opportunity for people to be their best. When he's out and about - using his bank card, travelling on the bus, in his workplace - people can choose to a) take advantage of him or treat him poorly, or b) encourage him or assist him if he's having some minor difficulty. We are happy to say the human race is stepping up and scoring big points on the "Nick-scale". He's an easy guy to like and help. We think he creates opportunities for himself, and others, every day.

We don't want to sound like we 've got it all figured out. Some moments, even some days, have been tough. But I can't live stuck in that spot; call it denial, call it glass-half-full; I need to see the positives. So we focus on the fact that we have been extraordinarily blessed: Nicholas has always been healthy; he is sociable and articulate; he has a younger brother, Lucas, who has alternately pushed and supported Nick to be his best; Greg and I have a strong relationship that has given both our boys a sturdy launchpad for their adventures; and our lives have been enriched by loving family, friends and so many good-hearted people. In short, I am grateful for our journey. I really cannot imagine our lives any other way! Thank you.

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