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(Josee Bisaillon for The Globe and Mail)
(Josee Bisaillon for The Globe and Mail)

Our daughter's Down syndrome has taken us on a beautiful journey Add to ...

I was digging through a pile in the corner of the garage one day, hunting for a garden tool. Just as I spied it, there was a sound like two coconuts banging together, followed directly by a dull but thudding pain on my forehead.

It took me a few exquisitely lengthy moments to realize that a shovel had fallen from the wall and landed on me. Clutching my throbbing forehead, I staggered into the house, seething with pain and with the indignity that there was only one person to blame - me.

In the kitchen sat my 14-year-old daughter, Clare, enjoying a midday bowl of Cheerios. On seeing me, she said her usual smiling, "Oh, hi Dad."

On seeing my pain, she immediately arose and came over to me. I received a tender hug, a gentle kiss and a light rubbing of my new Wile E. Coyote egg-bump. Though she spoke nothing further, I knew she was saying through her ministrations that I was loved.

Shortly after Clare was born, we learned she had Down syndrome. My wife and I did not know much about what that meant, but someone from the local Down Syndrome Association told us of an age-old analogy: The birth of a child with Down Syndrome is like booking a much-anticipated trip to Rome, but on getting off the plane finding that you have landed in Amsterdam - different than expected, but still good.

This did not mean much to us then, but we did know that the prospect of her unknown disabilities daunted and dismayed us. We held our other young children close, and cried.

Now in Grade 9, Clare is not quite as able physically or intellectually as most others her age. She has trouble with time, but she's good at counting, can handle simple addition, speaks in lovely sentences and is a willing reader, with a little help for new words. As I write this, she's halfway through Stuart Little. Fortunately, she has been physically healthy.

What we hadn't understood was the fruitful bounty she would bring to our family. Clare's sense of humour is delightful (she's an irrepressible tease and giggler), and she is always ready to be part of any adventure, with her trademark, "Count me in!"

She has a purity of spirit, an openness and kindness that are not hidden behind the masks and scars we "normal" folks bear so enduringly. She loves to play tackle football (and tackle soccer and tackle tennis), and can hit a baseball a country mile.

She loves soda crackers and Diet Coke. Her paintings have sold at an art show. She sings along with the songs in movies such as The Sound of Music at the top of her lungs, her deep and bellowing voice mostly finding the right words and notes.

She is a master of empathy, sensing physical, emotional and spiritual discomfort in others in a way that I cannot. She always finds ways to ease others' suffering; our grateful family calls her The Healer.

When I was growing up, it was unusual to see someone with Down syndrome, as many lived in institutions. When I did see such a person, I'd instinctively take a lingering extra look because I sensed by the gait, or shape, or facial features, that something wasn't quite usual. Once confirmed, I'd quickly look away, and hurry on.

Now, when Clare and I are out together, I can see the exact same sequence play out on the faces of people we pass. Clare knows and understands that reaction very, very well. But on she marches.

Clare embodies that mystery of human existence - the mixture of delight and emotional hardship each of us lives daily. Somehow, the crushing suffering that Clare's birth seemed to foretell for her and her family turned out instead to be substantial joy.

Not that all is brightness: We alternately ache at the struggles she faces and revel in the delight her unique spirit brings. Some people are able and willing not just to turn away, but to get close enough to know her, and they are always rewarded.

Where we live, in Ontario, physicians encourage free prenatal screening for a number of conditions. Given a finding of Down syndrome, most parents decide to terminate the pregnancy.

I understand that, having felt the same things after Clare's birth: uncertainty and fear, and the desire to have a normal, healthy child. But the fundamental joys of being a parent are not tied simply to good grades, first-place athletic ribbons, sophistication or high-paying jobs.

Parenting is foremost about loving and giving, and we have been honoured to have been able to love and give to Clare. And although we did not expect it given her disabilities, our daughter and her abilities have taught us more about these two gifts than we could have imagined. She's loved, and given, right back.

If you do receive an unexpected prenatal diagnosis, or give birth to a child with Down syndrome, take pause and explore. You might end up in the Netherlands instead of Italy, but it will be the start of something beautiful.

Bernard Marrocco lives in Ottawa.

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