It’s Saturday morning and Jasper woke up really, really early. We were up by 5:00AM, but now my wife is back in bed. I just finished an incredibly challenging and heartwarming story by Ian Brown, a Canadian author. I first came to know about him in a video documentary he made about his journey as a man. Essentially he asked questions about what it means to be a man in the modern world, and, as he was about to step forward into marriage, what it meant to his definition of marriage.

 Today’s piece in the Globe and Mail, Boy in the Moon, is touching because it reveals so much about his struggles, his searches and plunges in his life as he deals with a severely disabled child. His son, Walker, has CFC, an extraordinarily rare genetic disorder. Brown writes about the turmoil in his life, from his marriage to interactions with people. He writes about the joys of simple, everyday minutes in his life with his son, moments that we all take for granted.

The serious challenge for me, then, is to see Brown’s life in relation to my own, and to know that each moment we have is fleeting, like vapor, and needs to be captured. I was saddened to think that living with a severely disabled child could seem like both an endless tragedy and a darkened, soundproof hallway, where life seems like a cocoon.

Yes, I shed a few tears in sympathy because I don’t personally know what it means to live like that for each living moment. I cried when he wrote about his wife’s cries, “Where is my son?”  If you’re a parent, could you imagine living with a child who you could not communicate with at all, and you could not verify that he existed other than his/her physical presence?

I’ve been struggling with things in my own life, worrying so much that the stress begins to knot inside me, like a sailor tying some nautical fixture to an anchor. I worry about work, about paperwork for my wife’s visa, about the mountain of paperwork and foreign communication we’ll have to do to secure police records that are needed for her application…about money and resources, about time and aging, about health and food…

When do we stop worrying and begin trusting?

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