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The good-looking man in the expensive coat gazed down at me with anxious eyes but kept a respectful distance.

I felt the snow melting through my pants, the sharp gravel, the heaviness of my teenage daughter's head in my hands. And the familiar tension between her immediate needs and the social awkwardness of kneeling in slush when everyone else is on their feet. "It's okay, this is normal," I said.

His anxious eyes melted with remembered pain; his hand formed a slow salute of solidarity against his chest as he backed away. "My son too, my son too," he said. Then he was gone, knowing from experience his help was not needed and his empathy was one burden too many.

Life with a seizure-prone child involves living two existences at the same time. In one sunlit existence, you and your family do all the things other people do: You plan your day, your week, your lives. You use the words that other people use: "On Saturday, we're going to drop off the videos, then pick up some groceries." You actually believe, like most folks do, that these things are in your control and will take place as planned.

Then there's the other existence, the shadow life, where Chaos lurks at the entrance of his alleyway, leaning back on a graffiti-covered wall, arms folded, a mocking grin on his face. Just watching.

You live both these existences side by side and still manage to operate fairly effectively. But the dark alley where Chaos lurks never leaves your mind. It's permanently part of your mental landscape, nibbling at the sunlight.

I'm in the basement, loading the washing machine, ears pricked as always. There it is — the familiar cry, the familiar crash. I take the stairs two at a time and Sweetheart is on the floor in the television room. She is surrounded by video cases, the batteries from the remote still rolling under the couch. The quick inventory: teeth intact, tongue not bitten, face on the soft carpet, legs not against scalding radiator. This time, no injuries.

Next time, we're not so lucky. I'm back from the corner store to a parent's worst nightmare — no, not a crumpled body at the bottom of the stairs, but the next worse thing: Sweetheart's beautiful face resting in a pool of sticky blood. Oh, thank goodness, "only" a tongue half-bitten through.

Then there's the bathroom, full of hard, unyielding objects. Boy, do I hover when Sweetheart's in the bathroom. One time, I actually catch her. The next time, I don't, and a front tooth is the price of not being there.

At her teen club, there's social mortification and a carpet burn on her face as she goes down among the backpacks and running shoes.

And these are just the grand mal seizures. Let us enter for a moment into the weird world of complex partial seizures: a world in which a rational, modest teenage girl develops a desperate need to remove clothing in public or a sudden urge to wander out the front door into the street.

"Where are you going, Sweetheart?" Silence. "Why don't we go this way?" We head back toward home. "That's it, up the stairs. Let's keep the T-shirt on for now, shall we?"

Down the scale there are momentary seizures, the myoclonic jerks, the sudden, violent reminders that everyone's social poise — mine and yours — hangs on mere dances of electricity in a steadily ticking brain. Soup in the lap, pop on a favourite shirt, a milkshake abruptly relocated to the tablecloth. Other diners look away; the waiters pray we'll leave soon.

How Chaos must enjoy the show some days.

Mercifully, Sweetheart is still blind to the dark alleyway. She never remembers the seizures themselves. When her internal computer reboots and she wakes, the only legacies from her encounter with Chaos are physical: the hangover, the headache, the bruises, cuts and broken teeth. Her treacherous brain leaves no short-term record of its crimes.

Living with these two existences has become second nature for her family. Plan Bs are de rigueur. Life experiences that most people take for granted have become twisted by the bizarre reality that my daughter could be badly injured or die, simply because we weren't there.

And then it all stopped. We finally hit the magic number on the meds and Sweetheart had two months almost without seizures. There were no bruises, no hangovers, no pain — and several thrilling memories of small family adventures, uninterrupted.

I went on a date without a sitter. I almost stopped listening for the crash. Almost believed, as I went into her bedroom in the mornings, that she'd be alive. We made plans, like the sunlit people. We almost had faith they'd happen.

Chaos was puzzled. He lurched off his filthy wall, took his hands out from his armpits and scratched his head. Even then, I knew he was not going anywhere: His vigil was only suspended — as was mine. But for a while, I was the one with the mocking grin on my face.

Helen Leask lives in Toronto

Illustration by Paddy Molloy