move towards the light

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I oscillate wildly between feeling despondent and that there’s no hope for change in this world, and then feeling deeply thankful for what I have. I cannot figure out how to even out these emotions, except by recognizing them and accepting that they are true. As Anne Lamott’s son Sam said when he was young: “I think I understand about life:  pretty good, some problems.”

As I listened to Dr. Louis Francescutti’s presentation to health executives last week, I felt despondent about the state of our health system (and politics in my home province of Alberta in general). We’ve had the same government for 40 years, and having too much money has led to boatloads of entitlement, reams of wasted money and a lack of creativity or innovation. Why be creative when you can throw a bucketful of money at your problem and then walk away? That’s the Alberta way. Ugh.

I felt gross after that talk, mostly because what Dr. Lou said about the massive inefficiencies in the health system and an eroding sense of compassion from health professionals was true.

Then I stumbled upon an old article written about Darryl Sutter and his family. Darryl Sutter is, of course, the coach of the Stanley Cup winning LA Kings hockey team. He and his wife also happen to have a son with Down syndrome, Christopher, who is a young adult at age 21. Christopher is the exact same age as my oldest son (who also lives in LA) and ten years older than our youngest son, Aaron, who has Down syndrome too.

Often it is the families who are further along their journey that have the greatest insight, just by how they live their lives. Sutter talks about even during his nomadic time as a hockey coach, but how his family always came first. Sutter resigned from the Chicago Blackhawks so that Chris could live on the family farm, and then they moved to San Jose for his schooling, where services were robust for kids with Down syndrome. Back to the farm when he was older, and he had the freedom to ride his horse and tool around on the tractor. Now Chris is graduated from high school, and is in LA with his dad and family, where’s he’s involved with Special Olympics and the LA Kings hockey team.

I love this quote:

Darryl Sutter’s biggest triumph, though, has nothing to do with hockey. It’s the fact that, against massive odds, he and his wife have been able to raise a healthy, happy son.

Usually the term ‘healthy’ makes me shudder (I know so many families whose awesome kids wouldn’t be considered ‘healthy’), but in this case, I know what it means. Chris had heart surgery when he was a baby, and many medical interventions since. He’s as healthy as he can be – and that’s what health is really about, as the WHO says: “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” It is about well-being, not merely about not being sick.

I take heart in Christopher Sutter’s story. The Sutters talk about having a long-range plan for their son, based on what he wants to do. Aaron so desperately wants real friends and a girlfriend. We need to be in a community where he is accepted as a young man first, and divest ourselves of people who see him merely as a disability. He needs recreational opportunities, and decent year-round weather so he remains active. He needs access to the beach, which he dearly loves. He needs to have meaningful employment and be able to safely and independently travel back and forth to work, where he is recognized and known. This utopia doesn’t naturally exist. It is something we have to work hard to build for him.

The only thing that distracts me from the despondent is the grateful. The wisdom I learn from parents who have children who are older than mine is that we don’t have take on all the weight of changing the world. I have put in my time, and now I can move on. In fact, our greatest revenge in a society that is discriminatory and unjust is simply to live a good and happy life. And that’s what we are committed to do. Thank you, Sutter family, for your inspiration. It is now time for me to put down my battle axe and to move towards the light.

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