What matters

As we drove west to Chicago last week I travelled a route I knew so well over 20 years ago as a university student in London, Ont.

At the time, a family neighbour in Toronto owned a Mazda dealership, and he had rented me a small blood-red Mazda 323 with a stick shift.

On the spur of the moment, I might decide at midnight on a Friday to drive the 2.5 hours back to my parents' place in Toronto. I'd hop in the Mazda -- slide in my Michael Jackson 'Man in the Mirror' tape -- and crank it.

In those days, there were no lights on the 401 at London. I would drive confidently into the vast expanse of black that enveloped the highway, headlights pregnant with promise.

A couple of hours later, I'd open the screen door of our suburban Don Mills house, reach down to pick up the key my parents left sitting on the inside latch and open the door.

"It's just me," I'd call out, before locking the door and heading to bed.

I had some of the best times, and some of the worst times -- including my first severe depression -- at university. As I remembered all those miles back and forth in my little red Mazda, my chest ached because my son Ben would never enjoy the same intellectual and social experiences and freedoms.

I thought of a few things I'd read recently. One was the memoir Bad Animals by Joel Yanofsky, about life with son Jonah, who has autism. Yanofsky candidly reflects: "I was afraid that whatever progress Jonah made was not going to be enough. By which I mean -- and was as deeply ashamed to admit this seven years ago as I am now -- enough for me."

I have often remarked to D'Arcy that Ben appears to be quite happy with his life, despite its many limits and frustrations. "It only has to be enough for him," I have said. But recently, I have had to acknowledge that what pains me is the sense that it doesn't feel enough for ME!

That when D'Arcy and I walked through a courtyard at the University of Toronto recently and observed enthusiastic students-to-be touring their new home with their parents, I was filled with rage. Or that in our trendy downtown Chicago hotel populated by the iconic American family it was hard not to gape at parents with a handful of healthy children. How lucky can they get? And the flip side of that is how unfair it is that my son was one of the 3 per cent of babies born with problems and his had to be multiple. And how it's hard to acknowledge that despite years of intensive intervention, he hasn't had any major breakthroughs -- the kind regular people love to read about in kids who 'defy the odds.'

Thankfully, D'Arcy reminded me that happiness and success will look different for Ben and be defined on his own terms. He simply can't be compared to anyone. And I remembered reading a psychology book that talked about how we are each born with one unit of worth, and how it is not tied to anything we do. So, for example, babies are not less worthy because they are dependent, and people don't lose value when their abilities become compromised as they age. Human worth is inherent.

And what are the important things in life, anyway? D'Arcy asked. Is it money, looks, brains, status? Is it the appearance of perfection? At the end of the day, is that what matters? Or is it things like love, compassion, patience, acceptance?

In a culture that views disability as a tragedy and something less than human, we parents come up against what one BLOOM commenter described as "the internal struggle that exists within every parent of a child with a disability -- the desire to accept difference and the desire to be accepted."

Author Ian Brown (The Boy in the Moon) has written an exquisite piece for the July print issue of BLOOM (June has turned into July!). It's about discovering the value of children who won't achieve conventional success as adults.

"It's the very lack of so-called "normal" expectations, the absence of the possibility that we can ever "achieve" much or even disappoint each other, that frees us to be ourselves with each other, to remember who we are and what actually matters as opposed to what is supposed to matter," Brown writes. "That is a great, great gift -- and I say that as someone who hates to use the words "disability" and "gift" in the same sentence. I am beginning to realize that the world I occupy with Walker, my intellectually disabled son, is almost by definition anti-establishment: a world where social orthodoxy and conventional wisdom and received opinions have very little value. That turns out to be a good vantage point."