The Courage to Embrace Imperfection

Mixed Feelings About Early Test To Pinpoint Down Syndrome

Down Day: Children with Down syndrome celebrate World Down Syndrome Day. A new test can detect the genetic cause of the handicap very early in pregnancy, which may lead many parents to choose not have Down syndrome children.
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Down Day: Children with Down syndrome celebrate World Down Syndrome Day. A new test can detect the genetic cause of the handicap very early in pregnancy, which may lead many parents to choose not have Down syndrome children.

By William Kolbrener

Published March 23, 2012, issue of March 30, 2012.

On March 21, I chose to celebrate World Down Syndrome Day.

I gave our 9-year-old son, Shmuel, an extra hug and kiss.

But now, with a test called MaterniT21 developed by the biotech company Sequenom, the days for those who want to celebrate Down syndrome may be numbered.

MaterniT21 provides an alternative to the older form of screening known as amniocentesis, an invasive procedure effective in only the second trimester of pregnancy. The new test detects fetal DNA in a mother’s blood as early as 10 weeks into a pregnancy, revealing whether the developing fetus has the extra copy of chromosome 21 that causes Down syndrome. So parents now have an early opportunity to end a Down syndrome pregnancy.

In the search for happiness or even perfection, people, as it goes, make their choices. If things do not go as planned, and turn out less than perfect, there is the echoing internal voice saying, “You blew it.”

But the mantra of choice is not so much, even as it pretends to be, about achieving the good or happy life. With the micromanagement of every aspect of existence, our need to “make choices” reveals an ever more frantic desire to avoid risk and to achieve an illusory safety. So what may look like taking responsibility is really just an anxious attempt to remain in charge, finding every possible way to insulate ourselves, and especially our children, from risk. But this obsessive monitoring of every detail of life exposes a panicked sense of failure even as we try to deny it.

To paraphrase the T-shirt of my youth, stuff happens. No matter how much we assess risk to protect ourselves from statistically anticipated and even unanticipated risks, stuff happens.

This does not necessarily mean that there is a God — though it does mean that we are not God. Our obsession about choosing is in reality a way of masking our sense of imperfection and our lack of control, the truth that we are not divine.

Communities that acknowledge the divine, that perfection is otherworldly, may be more likely to accommodate children like Shmuel. True, not everyone in the community where we live — an ultra-Orthodox one in Jerusalem — embraces children that have Down syndrome. We have fought prejudice and institutional inertia to get Shmuel the education we feel he deserves, but he does find a place here. First and foremost, he exists. Meaning he was born, and children like him will continue to be born. For in my community, there are some choices we acknowledge we do not make. Of course, things do not always work out as planned: I would be lying if I said that we would have chosen to have a child with Down syndrome.

But giving up on some choices — for example, not to avail oneself of MaterniT21 — does not mean giving up on responsibility. A worldview based on “making choices” may give way to a different kind of choice, one that disavows omnipotence, acknowledging the possibility of the unforeseen and unplanned. These choices — confronting lack and imperfection in the world — demand courage; they are choices we thought we would never have to make. Like when the doctor emerges from the conference of nurses hovering over your newborn to announce, “Your son has Down syndrome.”

The rest of our children and my wife and I love Shmuel for who he is, the exuberant child who has made our home a more loving and generous place. But I also know that children with Down syndrome, as long as they continue to exist (though some feel the world would be a better place without them), remind us that there is an alternative to perfection as we tend to conceive it. And that the choices that are unanticipated — the ones requiring courage — may impinge upon us and pain us, but sometimes, in the end, they bring the best out of us.

We did not choose to have a child with Down syndrome; but we do choose Shmuel, every day.

So for this year, and for many years to come, I will continue to choose to celebrate World Down Syndrome Day.

William Kolbrener, professor of English literature at Bar-Ilan University, is the author of, most recently, “Open Minded Torah: Of Irony, Fundamentalism and Love” (Continuum, 2011).”



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