Accepting Grace: The Choice of Prenatal Testing

Originally posted as “Prenatal Testing: Making the Right Choice” in the online edition of Charisma Magazine on June 18, 2013.

Acceptance. Finding grace. Being chosen. In the Old Testament, we are given many examples of ordinary people coping with extraordinary decisions both ethical and moral.

Sometimes they stumble, such as Moses hitting the rock instead of speaking to it at Meribah, or the children of Israel’s Korach-led rebellion in the book of Numbers. Sometimes they are challenged, as in the story of Abraham’s attempted sacrifice of his son, Isaac, or Esther the Jewess becoming wife to Persia’s King Ahasuerus.

Making choices is what life is about, along with gratitude for G-d’s gifts, even the seemingly hard-to-understand ones. When my youngest son, Akiva, who has Down syndrome and autism, was born almost 16 years ago, many people asked me, “Didn’t you know?” or “Didn’t you test?”

I was 34, almost 35, when I became pregnant for the third time. We lived in Brooklyn, N.Y., in a young, upwardly mobile neighborhood with liberal values and a penchant for Mexican food. Our friends and egalitarian-minded Jewish community were made up of lawyers, doctors and other professionals. Disability was present in the greater community, but there were few, if any, children with Down syndrome. Akiva, who was born at home, was and is a chosen and loved child, despite the surprise of his diagnosis.

In the years since his birth, I’ve discovered that for many, choosing not to test for genetic disorders is simply considered irresponsible. Today, prenatal testing is described as safer than ever, and it can determine many genetic aberrations in addition to Down syndrome. Once you’ve tested and discovered an issue, the most sensible and advised course of action, in my world, is to abort the defective fetus. If you don’t test or choose not to abort, you represent a population that is assumed to be, in the words of a Jerusalem-based writer, “traditional or very observant … couples who refuse to have an abortion … [and] prefer to raise a less-than-perfect child.”

Wow. A less-than-perfect-child. Is that the child who goes out drinking in his teens, crashes up the car and flunks out of school? Or is that the child diagnosed at three with autism, learning disabilities or the new epidemic of our time, depression?

Or worse, is it the child who breaks the law and ends up in jail, lost to his family, perhaps forever? It’s a strange and offensive assumption to make, that parents of children with Down syndrome, a seemingly preventable disability—and let’s stretch that to children with other disabilities as well—prefer our children, imperfect as they may be. And how simplistic is it to presume that a person who lives a religion-based life finds it any easier to accept difference than their secular peers, a sort of “Punish me, I deserve this hardship because of my religious commitment”?

As for preferring a less-than-perfect child, to what, I ask? To their typical brethren? When did we lose sight of the ethical and moral issues here, that these are children who were, certainly in our case, planned and desired additions to a family?

Having come to maturity during the age of a woman’s right to choose, most of my circle considers it their absolute right to choose pregnancy and not have it chosen for them. They chose to become pregnant, and unless that choice led to infertility and its corresponding difficulties, they became pregnant. Once pregnant, they set out to have the perfect pregnancy, complete with appropriate exercise classes, stylish maternity outfits and a skilled practitioner who would deliver said healthy baby at the best hospital when the time came. They wanted their babies, those perfect babies, the ones with the number 10 apgar scores at birth, what they believed was their right to receive.

I won’t deny the at times painful facts of parenting my son. He’s chronologically 15 but operates at a much younger level. He sat up unassisted at 22 months, walked at six and requires assistance for most of his basic needs. He also has an excellent sense of humor, a real knack for languages and an almost encyclopedic knowledge of musical theater, much like our eldest son.

Accepting the birth of or later diagnosis of a child with a disability is a moment of reckoning—for the child, for the parents, for the family, friends and extended community. For many, what initially feels like tragedy gradually becomes normal. Discovering that you are capable of loving, caring and accepting difference has a way of changing you for the better. While there are families who are divided by disability, there are families who are united, learning to support each other through challenge and relishing those special and sometimes long-awaited moments of success.

It’s funny. While I reject the notion that we as a family were chosen “to bear this burden,” or that “it was G-d’s will,” and I hated when people said things like, “Akiva couldn’t have been born into a better family,” I recognized that there was a part of me that did feel that we had been uniquely prepared for this mission, perhaps because of our lifestyle as a homeschooling family or because of our supportive religious community or maybe because Akiva was our third boy—we knew how to do this. We chose not to test. We didn’t play Russian Roulette; we had a baby.

This is My Brother, Akiva

Gabe Skop, (he’s the one on the left) now 19, is not a man of many words. Affectionate and warm, he’s always ready with a hug, enjoying many good friendships with guys and girls alike. This year, he’s having a particularly Israeli experience at a Mechina, or pre-army program. The Mechina movement exploded in post-Rabin-assassination-Israel along with the realization of the growing rift between secular and religious Israelis. Gabe’s Mechina, Aderet, is pluralistic, catering to kids who come from all kinds of backgrounds, many of them at a point in their lives where they want the freedom to explore their religious identity in a non-judgmental environment – that is, away from Mom and Dad.

There’s lots of Torah l’shma – learning for the sake of learning – with visitors from all walks of Israel life, religious, cultural, and political. There are no tests but lots of projects for the good of the Mechina as well as the greater community nearby.  One to two days a week they volunteer after school, helping with homework, hanging out, acting as role models for kids who may lack those positive influences in their lives. Gabe’s favorite things of the year have been the intense workouts to prepare them physically for the army, as well as the week long hikes and other trips around the country. It’s camp…for a year.

Each participant is supposed to teach a class during the course of the year. Gabe was not pleased. All year long, he reported about some of his friend’s classes, relating the success stories mostly. In truth, he hadn’t found his topic until about a month ago when I shared Bill Kolbrenner’s article, The Courage to Embrace Imperfection, with him on Facebook. Gabe hadn’t considered that many people, most really, would probably choose to abort a fetus with a known disability – a testable disability, such as Down syndrome. I shared another article or two with him, including Bill’s other article that I love, along with a piece I wrote some years ago, when Akiva was much younger about testing and abortion, or what I describe as the yen for the perfect child.

Gabe was off. Through the Passover break, he read and thought and talked about it with others. A few heated discussions about the topic made him realize that for many, a women’s right to choose should come first and foremost and that it’s not for him to judge. Others disagreed. All this, with Akiva around full time during a long and at times tiring vacation from school.

Back at Mechina, Gabe called me and talked through his presentation – he’s not one for note taking and it can be hard for him to focus through on such stuff so I suggested that he ask friends to help, which he did. At one point, I said to him, “You know, it’s okay if you talk about how it’s hard sometimes with Akiva, or that maybe you wish he didn’t have special needs,” to which Gabe replied, “Oh, I’m older now, I don’t think about that anymore.” I closed my mouth before the flies flew in, wowed.

As it so happened, Miriam and I were visiting Aderet on the same day Gabe presented. We were speaking about inclusion and Shutaf and Gabe liked the idea of speaking right after us – it all worked out so perfectly. Miriam and I did some role playing with the kids and a good discussion was sparked about the rights of people with disabilities – is it truly a social justice issue and does the government really have to provide and should all communities, including more closed ones, such as kibbutzim, be required to accept families who have children with known issues into their communities?

And then, after a short break, it was Gabe’s turn. He scrawled the word, מפגר, or ‘retard,’ on the whiteboard. Asking the crowd what the word meant to him, there was a discussion of the misuse of the term, the redirection, if you will of a diagnosis into a negative word, a curse word even, at times. He gave the dictionary definition and then, put up a picture of Akiva. It said underneath the picture – and it was of Akiva at his cutest, ‘smilingest’ best – this is my brother, Akiva, he has Down syndrome. He went on to explain a bit about the syndrome as well as answer questions about Akiva and his development and what he’s like before moving on to Bill’s article and a heated discussion about abortion. It went well. I was proud, overwhelmed really.

Why? Not because he argued for or against abortion – that’s something for him to work through and understand, even if he doesn’t always agree and he comes by it honestly. We neither tested or thought of aborting – not because I don’t believe in a women’s right to choose but because I didn’t think that I had the right to choose what baby I get. Of course, I don’t really know what I would have done had I known and am glad for that and I can be honest and say there are times I wish it was different but I’m not sorry – there’s not tragedy here, only life lived as best as we, and I, can.

Back to Gabe. That simple statement. האח שלי, עקיבא. יש לו תיסמונת דאון – it was just so beautiful in its completeness and Gabe was completely comfortable saying it. The truth really does set you free.