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Parenting the less-than-perfect child

Parenting any child, even the perfect child, the “please and thank you,” honor student, doesn’t-need-every-new-Apple-product child, is the hardest job in the world.

(Please don’t comment or send emails saying that parenting is joyous, the most rewarding thing you’ve ever done and the act that has defined your life. I agree, wholeheartedly. But none of that changes my assertion that being responsible for the growth and development of another person, oftentimes your flesh and blood, is inexplicably difficult.)

But what is it like to parent the child who is born deaf or autistic, or without 10 fingers and 10 toes? Or the child who, either through nature or nurture, commits an explicable act of violence against himself or others?

I flirted with this world in the early years of my twin sons’ lives. Born two months premature, Andrew was 8 days old when doctors told us he had had a massive brain bleed that could leave him blind, deaf, unable to ever walk or talk. Christopher, the “healthy” twin, was born with two holes in his heart.

Through two years of visiting every “-ologist” known to man, we were the parents of definably “less than perfect” children. Then, as is often the case, doctors are proved wrong. Holes fill in as the heart muscle grows. The child who seemed destined for disability learns to ride a bike. You breathe an enormous sigh of relief, celebrate the seemingly minor milestones, and you try to forget the fear that clutched at your heart when it seemed that all could so easily have gone so wrong.

So I was transfixed when I stumbled upon an interview with Andrew Solomon last month on “The Colbert Report” about Solomon’s 2012 book, “Far From the Tree.”

Solomon, a National Book Award winner, has written an exhaustive — and emotionally exhausting — account of the lives of parents who are raising less-than-perfect children. (He calls them “exceptional” in the least pandering sense of that word.)

He raises many questions: Should deaf children be taught to read lips and talk, so as to fit in better to society? At what age do parents allow a transgender child to wear a dress to school? And what if your child is Dylan Klebold, one of the two Columbine High School shooters?

Solomon’s definition of “exceptional” is, in itself, fascinating. He includes childhood prodigies, on the theory that a prodigy poses as significant a challenge to family dynamics as does a severely disabled child. And he is open about how his own experiences as the gay son of straight parents motivated this project.

But what struck me most in reading the book and hearing Solomon discuss it was an essay he cited by Emily Perl Kingsley, a writer for “Sesame Street.” She says having a child with limitations is akin to planning the trip of a lifetime to Italy and having your plane land in Holland instead. Holland is a different place, not the place you planned on going, but, as Kingsley writes, Holland “has windmills ... and Holland has tulips. Holland even has Rembrandts.”

As someone who spent time, literally and figuratively, in Holland many years ago, I was struck that the analogy works not just for the parents of exceptional children, but also or those of us who are too anxious about every decision we make in parenting our unexceptional children.

We must all remember to savor our tulips.

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