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.
getty images
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.
  • Print
  • Share Share

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).”


The Jewish Daily Forward welcomes reader comments in order to promote thoughtful discussion on issues of importance to the Jewish community. In the interest of maintaining a civil forum, The Jewish Daily Forwardrequires that all commenters be appropriately respectful toward our writers, other commenters and the subjects of the articles. Vigorous debate and reasoned critique are welcome; name-calling and personal invective are not. While we generally do not seek to edit or actively moderate comments, our spam filter prevents most links and certain key words from being posted and The Jewish Daily Forward reserves the right to remove comments for any reason.





Find us on Facebook!
  • A new initiative will spend $300 million a year towards strengthening Israel's relationship with the Diaspora. http://jd.fo/q3Iaj Is this money spent wisely?
  • Lusia Horowitz left pre-state Israel to fight fascism in Spain — and wound up being captured by the Nazis and sent to die at Auschwitz. Share her remarkable story — told in her letters.
  • Vered Guttman doesn't usually get nervous about cooking for 20 people, even for Passover. But last night was a bit different. She was cooking for the Obamas at the White House Seder.
  • A grumpy Jewish grandfather is wary of his granddaughter's celebrating Easter with the in-laws. But the Seesaw says it might just make her appreciate Judaism more. What do you think?
  • “Twist and Shout.” “Under the Boardwalk.” “Brown-Eyed Girl.” What do these great songs have in common? A forgotten Jewish songwriter. We tracked him down.
  • What can we learn from tragedies like the rampage in suburban Kansas City? For one thing, we must keep our eyes on the real threats that we as Jews face.
  • When is a legume not necessarily a legume? Philologos has the answer.
  • "Sometime in my childhood, I realized that the Exodus wasn’t as remote or as faceless as I thought it was, because I knew a former slave. His name was Hersh Nemes, and he was my grandfather." Share this moving Passover essay!
  • Getting ready for Seder? Chag Sameach! http://jd.fo/q3LO2
  • "We are not so far removed from the tragedies of the past, and as Jews sit down to the Seder meal, this event is a teachable moment of how the hatred of Jews-as-Other is still alive and well. It is not realistic to be complacent."
  • Aperitif Cocktail, Tequila Shot, Tom Collins or Vodka Soda — Which son do you relate to?
  • Elvis craved bacon on tour. Michael Jackson craved matzo ball soup. We've got the recipe.
  • This is the face of hatred.
  • What could be wrong with a bunch of guys kicking back with a steak and a couple of beers and talking about the Seder? Try everything. #ManSeder
  • BREAKING: Smirking killer singled out Jews for death in suburban Kansas City rampage. 3 die in bloody rampage at JCC and retirement home.
  • from-cache

Would you like to receive updates about new stories?




















We will not share your e-mail address or other personal information.

Already subscribed? Manage your subscription.