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Part 3, Chapter 1

Blink of Light

The Globe and Mail

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Chapter 2
Chapter 3
Chapter 4
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A white bungalow on the edge of the city is where my son, Walker, lives now.

I was out there the other day, but I can see it in my mind. I think about it all the time since he moved there, two years ago.

Wider than it is long. Ramp to the door. Always at least one car in the driveway. Strip mall on the corner. Names of the kids painted on the patio door.

It's first-rate, as assisted-living homes go: well-organized, well-staffed (the 24-hour care Walker needs, even asleep). He lives there with seven other handicapped children.

I know his bedroom by heart: blue-green walls, needs another window. But neat. Blond wood chest of drawers. Stickers of soccer balls on the walls. NASCAR bedspreads! Three of them share it: my lad Walker (cardio-facio-cutaneous syndrome, CFC, a rare genetic mutation that leaves him, at 11, with the mind of a one-year-old and the body of a seven-year-old, incapable of speech); Marcus (deaf, delayed, anxious, but lively); Yosuf (tall, skinny, delayed, decomposing skeletal strength, sweet and quiet — he always shakes my hand).

Picture of Hayley, Walker's older sister, on the wall. Picture of Olga, our nanny. Picture of his Ma. Picture of me.

The closet, military in its order. Bins, labelled: shirts, pants, underpants, spare arm tubes (to keep him from smashing his head with his fists, as he is prone to do). A picture of a snowman. A pair of boxing gloves, traced on purple paper.

I went out to fetch him after school, to bring him home for a few days. (Did I tell you? He lives there now.)

I arrived early, before Walker was back from school. The house was still, overcast quiet. Seven people in the living room — Jasmine, Colin, Yosuf, Tharsika, Cindy and Karen, with Marcus watching TV with the volume off — and not a sound to be heard. None of them can speak. They were lost in their helmets and wheelchairs and their private minds.

Walker's little bus arrived. I ran out to meet him. "Hello, Beagle!" I said. To my surprise, he jumped into my arms for a hug. For all the times I've picked him up, I'm never sure he'll remember me. He always does, but I'm never certain.

I gave him a hell of a squeeze back.

And then, while we gathered his pump and his formula and his meds and his snow pants and his schoolbag and his arm cans and his foam helmet (I forgot the stroller), he wandered into the living room.

None of the others said hello, but, then, neither could he. He went straight to the Christmas tree instead, in his deliberate way. To examine the ornaments. In that house of eternal silence, he alone seemed drawn to brightness. I haven't been able to forget that. We left quickly. He loves the snow. Everything he likes is so important to me.

What I worry about is the future. If I can prove Walker's broken presence is essential to the world, maybe someone will protect him when I'm no longer here to do so.

One night last fall, for instance, I took my 14-year-old daughter, Hayley, to the ballet. She's a dancer herself; it's my favourite evening out — I wear a bow tie and she wears a dress. Jerome Robbins had choreographed music by Philip Glass: row after row of evenly spaced dancers, pacing across the stage in identical time to Mr. Glass's rhythmic score. Only an occasional couple broke step to perform a pas de deux.

A ballet about the life of a great city, in other words, with its armies of people doing the same things in the same impersonal place to the same rhythms — save when they break away from the pack and just as quickly slip back into position. A work of art that lets you see the crisp shape of your own existence, even while you are immersed in your repetitive, blinkered life. A generous, hopeful gesture. It brought thick tears to my eyes.

Walker makes people cry too. It can happen any time and to almost everyone who meets him, eventually.

They aren't tears of loss, or pity. I think they're tears of gratitude.

The handicapped remind us how dark life can be — every life, not just the handicapped ones. Born out of darkness, to head immediately toward that other darkness, with only a blink of light between. That was how Samuel Beckett put it. Most of his characters are legless, or confined, or without reason for hope.

So when Walker does anything to suggest there's a point to his life besides pain and isolation, it seems particularly brave. For a boy like Walker, an ornament on a Christmas tree is like the ark of the covenant. Even if my son is trying not to succumb to pain, and suddenly finds it bigger than him, and is stricken with grief at his defeat, at least he had hopes of beating it. There's a cup of grog for the undefeated, as a friend recently put it.

I think that's what the weeping is about. Walker has the same effect as the ballet: They both can reveal the larger shape of the world.

So to anyone who wonders about the potential value of a handicapped child, and the possible meaning of a penumbral life passed mostly in pain, that's one possibility. What if Walker's life is a work of art in progress — possibly a collective one? Would that persuade you to take care of him for me?

Part 3 continued on Chapter 2…

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Chapter 1
Chapter 2
Chapter 3
Chapter 4
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