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Preventing Suffering

One question I've gotten surprisingly often over the years is: "Did you know about Collin's disorder before he was born?" Most of the time, the person wants to know, Did you have a chance to prepare yourself? But sometimes I can tell they're actually asking, Did you have a chance to avoid this?

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Three weeks ago, CBS News released a story about Iceland's extraordinarily low rates of babies born with Down syndrome, owing to a combination of prenatal screening and "heavy-handed genetic counseling." Approximately 85% of pregnant women in Iceland elect to have the screening and approximately 100% of the women who receive a positive test for Down syndrome choose to terminate their pregnancies.

This is not a post about abortion, so let's all take a deep breath. It's not even a post about the fact that in order for Down syndrome to disappear, people with Down syndrome have to disappear.

This is a post about suffering.

In the CBS piece, the reporter interviewed Helga Sol Olafsdottir at the hospital where over 70% of births occur in Iceland. She counsels women who receive news of a chromosomal abnormality on whether to "continue or end their pregnancies".

Olafsdottir tells them: "This is your life -- you have the right to choose how your life will look like." Her explanation of what happens when the woman chooses to terminate her pregnancy?  "We ended a possible life that may have had a huge complication... preventing suffering for the child and for the family."

We're preventing suffering. If only.

Of all of the troubling aspects of this story, the one that struck me most deeply was the idea that one grossly oversimplified piece of information -- a chromosomal 'abnormality' -- can be a key to avoiding suffering. The idea that avoiding suffering is the goal as a parent. The idea that, regardless of whether you have the right to "choose how your life will look," you have the ability to make your life look a certain way.

The suggestion that a child with 'normal' genetic makeup won't bring you suffering is an illusion at best. Make no mistake: when you choose to have a child, you choose suffering. You can't know what shape that suffering will take and there is plenty of pastel hullaballoo to distract you from the fact in the early days; but it will come.

Maybe there will be terrifying food allergies. Maybe there will be uncontrollable behavior issues. Your child's "huge complication" might be cancer or terrible life choices. 

So why the desperation to avoid this particular "complication", this brand of suffering? Because, as Olafsdottir's statement implies, in our society there is no suffering as undesirable as disability. We can easily speculate on reasons for this: disproportionately low representation of individuals with disability in the media, segregation in schools, lack of education and experience. It all adds up to make disability a frightening unknown, both practically and socially. 

But here's the truth: there's only one thing more certain than suffering in child rearing, and that is joy. You may not know what suffering is coming, but you can count on joy. Always. And, rather than canceling joy out, in some mysterious way suffering actually seems to strengthen it.

This discussion, of course, doesn't touch on the suffering that can supposedly be prevented for the child or the suggestion that it is better to be dead than to live with disability. If you're interested in some thoughts on the subject from the kids' point of view, Collin and his cousins shared this.

The ultrasound above is the first glance I got of Collin's face. Looking at it, I had no idea the suffering that lay ahead of me. I also didn't have the slightest inkling of the joy in store. None of us do in the beginning. We can't. But we can go into parenthood with our eyes open, knowing that our very life is getting ready to become a "huge complication" and bracing ourselves for the joy will inevitably surprise and overwhelm us again and again.