A week after my son left for university his twin sister opened the car door on the highway. I was taking the collectors exit a little late and the divider loomed large through the windshield when the outside abruptly rushed inside.
I grabbed my daughter's sleeve and yanked her back. "Don't open the door!"
She fought my hand, fired up by the unusual yelling, then slumped angrily in her seat. The road continued to fly past, much too fast. Stabilized now in the collector lanes, I leaned across and jerked the door shut. Road noise dimmed reassuringly. We were still alive. For now.
My daughter has poorly controlled epilepsy and her seizures take many forms - including the door-opening form. As a result of the constant electrical chaos in her brain and the sedative drugs that keep her alive, but can't control the seizures, she struggles to learn, reason and communicate.
Her twin brother, born six minutes later, dodged this bullet.
It's certainly made for an interesting experience of motherhood.
My son can do a Rubik's Cube in 14 seconds. My daughter can't read a clock face.
My son spent the summer after high school backpacking around Europe on the train. My daughter spent her summer learning the Toronto subway system.
My son worked an underground job as a party host in Rome. My daughter walked to the corner store and made it home alive.
My son texts me from across the city. My daughter texts me from inside the house.
My son lets me hug him. If my daughter lets me touch her, I know she's having a seizure.
It's so much easier if the child follows The Plan. Adapting life goals to suit every child's strengths is a lot more demanding than if the child sticks to a conventional path.
A few years ago, a joke popped into my head about my twins, two children with different destinies. When I had learned I was pregnant I had crossed the road from the doctor's office and taken a pew in the nearest church. Unaware I was expecting twins, I prayed every mother-to-be's prayer: "Please make my child healthy."
When the children came along and my daughter was intellectually disabled I imagined a cartoon exchange with the Almighty.
"What about my prayer?" I asked him. "Oh, sorry," said He. "I thought you were talking about the other one."
This bitter joke disturbs those I've shared it with, religious and non-religious alike. I like it because it's an emotional barometer: On a good day, the joke seems unfunny and tasteless. On a bad day, it's hilarious.
Parents of disabled children develop the ability to see the positive side of life (on a good day), but we're no army of Pollyannas. The insight that comes from rearing non-conventional children is hard, hard won. We would much rather have gained this wisdom by attending classes. However, wisdom arrives by its own route, and if I've learned anything it's to relish the unexpected and the possible. To focus less and less on how life should be, and more on how it could be.
For one thing, I've dropped the illusion that we adults are in control of everyone and everything. With one child who opens the car door in transit and another who has basically reared himself, I can be trusted on this one.
This is liberating as well as terrifying. Knowing the reins could fly out of your hands at any time makes the ride that much sweeter. There's also a certain freedom that comes with entering a world with no academic absolutes. Despite the fact that my son is studying to be a rocket scientist and I glow with maternal pride, I feel no urge to compete at dinner parties. For any child, the bar should be set wherever it needs to be: The only reasonable aspiration is that they reach their full potential.
This sounds like a consolation prize but it's actually hard work. It's so much easier if the child follows The Plan. Adapting life goals to suit every child's strengths is a lot more demanding than if the child sticks to a conventional path.
My son ended up leaving for university right on cue. My daughter watched him go and wondered where Ottawa was. It could have been the end of the story: One child left and the other child stayed.
But my daughter was going to enter adult life, whether we gave up or not. We lurched back into action. The phrase "transition planning" entered our lives and caring counsellors lined up worthy goals: cooking, an adapted college program, disabled soccer.
My daughter had other plans. She started bringing home art from her special-needs school - heart-stopping pastels in brilliant blues and reds and greens. Hilariously sly animals, dancing strawberries and stars, ruined buildings lit by rainbows. Images that showcased her world, the chaos of her brain and the power of possibility, of the unexpected.
My son is entering his second year at university this September, while his twin sister is holding a public exhibition of her work at a Toronto library. If she chooses to open the car door, I'll be ready.
Helen Leask lives in Toronto.Report Typo/Error
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