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I am Walker Brown Add to ...

For eight years, every night is the same. The same routine of countless details, connected in precise order, each mundane, each crucial.

The routine makes the eight years seem longer, until afterward, when because of the routine the years seem to have evaporated.

Wake up to a steady, motorized noise. Something wrong with the water heater. Nnngah. Pause. Nnngah. Nnngah.

But it's not the water heater. It's my boy, Walker, grunting as he punches himself in the head, again and again.

He has done this since before he was 2. He's 11 now. He was born with an impossibly rare and random genetic mutation - cardio-facio-cutaneous syndrome, a technical name for a mash of symptoms. He is globally delayed and can't speak, so I never know what's wrong. No one does.

There are possibly 300 people with CFC around the world. Doctors call it an orphan syndrome.

I count the grunts on the way to his room: one a second. To get him to stop hitting himself, I have to get him back to sleep, which means taking him downstairs and making him a bottle and bringing him back into bed with me.

That sounds simple enough, doesn't it? But with Walker, everything is complicated. Because of his syndrome, he can't eat solid food by mouth, or swallow easily. Because he can't eat, he's fed formula through the night via a feeding system. The formula runs along a line from a feedbag and a pump on a metal IV stand, through a hole in Walker's sleeper and into a clever-looking permanent valve, sometimes known as a G-tube or a mickey, in his belly. To take him out of bed and down to the kitchen to make the bottle that will ease him back to sleep, I have to disconnect the line from the mickey.

To do that, I first have to turn off the pump (in the dark, so he doesn't wake up completely) and close the feed line. If I don't clamp the line, the sticky formula pours out onto the bed or the floor (there are patches of carpet that feel like the Gobi Desert under my feet, from all the times I have forgotten). To crimp the tube, I thumb a tiny red plastic roller down a slide. (It's my favourite part of the routine - one thing, at least, is easy.) I unzip his one-piece sleeper (Walker's small, and grows so slowly he wears the same sleepers for a year and a half at a time), reach inside to unlock the line from the mickey, pull the line out through the hole in his sleeper and hang it on the IV rack that holds the pump and feedbag.

Then I reach in and lift all 45 pounds of Walker from the depths of the crib. He still sleeps in a crib. It's the only way we can keep him in bed at night. He can do a lot of damage on his own.

This isn't a list of complaints. There's no point to complaining. As the mother of another CFC child once told me, "You do what you have to do." If anything, that's the easy part.

The hard part is trying to answer the questions Walker raises in my mind every time I pick him up. What is the value of a life like his - a life lived in the twilight, and often in pain? What is the cost of his life to those around him? "We spend a million dollars to save them," a doctor said to me recently. We were sitting in her office, and she was crying. "But then when they're discharged, we ignore them."

Sometimes, watching him, it's like looking at the moon: You see the face of the man in the moon, but you know there's actually no man there. But if Walker is so insubstantial, why does he feel so important? What is he trying to show me?

To answer that question, I decided to look again at the life he had lived, and the way we had helped him live it - first at home, later in a special community for children like him. I climbed into a car and drove across the continent to meet other children with his syndrome.

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