Tuesday, October 21, 2014

Pinpoints of light

By Louise Kinross

In The Boy in the Moon, author Ian Brown uses the term 'pinpoints of light' to describe how moments of grace and love could relieve the dark parts of raising his son with disabilities.

I had a few of those moments recently. One occurred yesterday when I was at a research conference. Someone I didn't recognize came up to me, smiled and said: "Are you Ben's mom?"

"Why yes I am," I said, unable to place this person.

He introduced himself as one of the lead people at one of Ben's co-ops. I knew his name immediately but had never met him in person.

"Last year I used to see you dropping Ben off," he continued. "It's been great having Ben with us and he's developed quite a fan-base."

That was a pinpoint of light, unexpected, warm and gratifying.

One of the two co-op placements Ben has this year resulted because I reached out on Facebook to someone I didn't know and asked if he'd be willing to consider my son.

He made a commitmentover Facebookand followed through. There aren't many people like this in the world, particularly in business.

Another place where the light came through.

Last year I drove Ben to his co-op three days a week because the school board wouldn't provide transportation (even though he is eligible for transportation to school). It was a significant distance from us, and resulted in me being late into work on those days.

This year his principal went to bat for us and we got transportation. It's not perfect. It didn't show up the first day, and it now involves two "milk-routes" that keep Ben on the bus for an hour each way. I started off fighting that, because we had already provided medical documentation that Ben couldn't be on the bus for an inordinate amount of time. But then I noticed that Ben seemed to be managing it okay. So I let it go.

The milk route means an early pickup that gets all of us up earlier in the morning. The bonus? I get in to work earlier, minus the stress of driving like Mario Andretti to get the co-op drop-off in first.

As I was coming home today, thinking about this post, a fear crossed my mind: writing about it might jinx my luck. Maybe I should keep it to myself, I thought. That's what happens when you're used to operating in generally dark and stormy weather. It's hard to trust that the light will break through again. Or, it's easy to dismiss the lightour great luck this year with Ben's placementsby reminding myself that next year we fall into a black hole when Ben ages out of pediatric services. Why get hopeful and complacent now when everything will turn dark again? Why be happy with the things we have set up this year when many will evaporate next year?

Sure enough, Ben got off the van this afternoon and told me that he had a bad morning and refused to work. He was concerned that I wouldn't be happy. This after a generally glowing work report from yesterday.

Who am I kidding? I thought. Why did I even think about writing this post? In my world you only have to wait a few hours and the sky will turn cloudy again.

I guess that's why we need to document and savour the little bits of light, whenever they come.


Thank you for this, Louise. I'm going to take your post as a sign to look for the light out there today. (You know I struggle with this too). Some of the darkness comes from my own nature, the rest of it is from the heavy weight of the struggle with systems & society. It does not come from Aaron himself.

I will search carefully for that pinpoint of light out there - I know it exists! Thank you for the timely reminder.