Wednesday, January 4, 2012

Who Knew?

Today as the Toronto star newspapers hit the floor of the distribution centres, at three in the morning, they carried a couple of healthcare stories that seem to scream at each other. One was the story of the highest paid hospital executives and their bonuses, the other was about our very own Marky and his currently underserved medical needs. It seemed strange (in an outrageous way) to me that a system that can't afford nurses, can afford perks.

A few days earlier, in the middle of a long sleepless night, fuelled by frustration, I had hammered out a plea and sent it to the Toronto Star. I wrote, Marky is my 17 year old son, fading away with a neurodegenerative disorder. He's been declared a complex care kid by Sick Kids. He was turned away from Perram House Hospice because he's too complex. He was turned away from Darling Home for Kids because the funding only covers his final 90 days of life. Really. Mark was sent home on Dec 8th with only 43 hours of nursing support per week. This is a story here of two parents who are slowly being crushed by the burden of a sick son, as the system ducks and dodges. So while it's Christmas eve for many, it's not so much here on Endean. In the morning I wondered if I had made a pathetic fool of myself. Surely there are others who are dealing with these kinds of issues–suck it up Dad.

Then The Star called saying they wanted to carry the story. When they showed up I was completely sleep deprived and Linda was away. We take turns at living and it was her turn. I wobbled down stairs with the reporter and photographer in tow. I perched on a stool beside Mark's bed and began sharing the story. With the vocabulary of a drunk, a sleep deprived drunk, I fumbled my way through, posed for some pictures, then hung my head and let out a subtle sigh–clic clic clic, "perfect" said the photographer.

In the end I still wonder if I've done the right thing. Have I brought the right kind of attention to the situation. Well by the end of the day the story hit the street, Mark's file had grown new legs and was climbing the bureaucratic ladder to the Minister of Health's office. Mark's story was being discussed over the radio and e-mails and tweets were buzzing. It felt good and the possibility of finding our way through this healthcare mazed seemed much more likely.

It's late now, I'm just waiting fro the nurse to show up for the overnight shift. Linda got to go to bed earlier tonight, but she'll be up at 6 when the shift changes back to us. As I sit here thinking about what this story in the paper might have done to lubricate the gears of bureaucracy, I wonder about those whose voices aren't being heard. I really hope this story gets some traction and The Star goes after it. How many others out there are slowly being crushed by the burden of a dying loved one.

Mark coughs, a very productive cough, and I leap up to clear his throat with a suction pump. The process is a bit violent, jabbing at the back of his throat with a rigid plastic tube. When I'm done he looks up and smiles at me. Sometimes he laughs, but not tonight. Tonight he manages a smile.

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