Thursday, July 7, 2011

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."


These are conflicts that I really believe only "WE" understand, and since we're all not living together in some sort of utopian community, it's lonely at times, excruciatingly so. What a terrific, mindful and sustaining post, Louise. Can you see me pick myself up from the fetal position, yet again, and walk onward?


This is a most wonderful piece, worthy of the next issue of BLOOM Magazine.

Unfortunely, I am pressed for time at the moment and cannot respond in my usual manner. However, I will say this: "We (me and you) are going to send more kids with physical disabilities to university, including myself, as I am on the verge of a breakthrough! This is why I declined to enroll at GBC.

I told you, "I need to talk to you."


p.s. The piece or comment, regarding my Dad and me, is yours to do as you wish.

This post is beautiful, honest and oh so true!

I don't think you would be human Louise if you didnt feel these things...I think our disabled children teach us more than any written word by experts ever can. I know that to be the case with me. However, sometimes I wish I was naive and oblivious to that fact and had Savannah here.

Thanks as always for a thought provoking post.
Diana x

Louise - How do I get a copy of the July print issue of Bloom? I'd love to read Ian Brown's article. Also, is it an article that I can link to from my Blog - sounds like an article definitely worth sharing.

I can relate to much of what you shared in this post despite the fact that I have other children who do have the privilege of going to college. It doesn't take the sting out of the fact that my son can't.


Thank you everyone!

Elizabeth -- yes, I think it's that feeling of being in conflict with the prevailing culture that is so isolating. You sustain me!

Matt, look forward to getting caught up.

And yes Diana, I get exactly what you are saying. I'm so glad to see you here!

Ann -- you can send me your snail mail address at:

and I can put a copy of the upcoming issue in the mail to you (probably in late July). After the mag comes out I will post Ian's piece so you can link to it. Look forward to hearing more about your son. Thanks for visiting! Louise

I really relate to your feelings Louise. Even if my kids don't want graduate degrees, I want them to have the option to pursue one.
I haven't arrived where Ian Brown sits, and doubt I ever will, but I do accept that perhaps that says more about me than anything else.
I will be thinking about this line for a while
"to remember who we are and what actually matters as opposed to what is supposed to matter,"

Looking forward to the July issue.

I loved varsity, enjoyed varsity and wjen illness forced me out, that was horrible.. even now I wish I could go back.

I've been thinking about this a bit more Louise. You've touched on this topic of 'being enough' before and, for me at least, I think living a life you enjoy is different from being able to manage your own life.
So many things have already gone wrong for Julia and managing all the aspects of her life - medical, educational, social- is so time consuming, I feel sick when I think about what will happen when I can no longer do this.

It's still difficult for me to see pictures of my friends' children at the children's museum or on their boats or somewhere I know I could never take Benjamin at this point. It even pains me to see a family with three "normal" boys all lined up, smiling for the camera. And it bothers me more that it bothers me.