Wednesday, October 4, 2006

Staring a 'Hard Decision' in the Face
By Guestblogger Tragic Christian

From the AP story about Ms. Magazine's abortion petition:

Another signatory ... described her difficult decision last year to have an abortion after tests showed that she would bear a son with Down syndrome.

"I felt it was my right to make the decision, but having that right doesn't make the decision any easier," she said. "It was the hardest decision I've ever made"...
I'm a man, so I'm not supposed to have an opinion about abortion. Instead, let me tell you about the wonderful morning I had yesterday, taking my 2-year-old daughter Dot to speech therapy and physical therapy. Her major interest right now is reciting the colors (which she does in English and American Sign Language, yet) and reciting the names of her boyfriends in her early start toddler class ("Edgerrrrr! Androooo!") and informing me they wear "backpacks." She waved at everyone she saw that day with a cheery "Hello!" and smiled a gap-tooth smile under her mop of red hair. They smiled and waved back. What a cutie!

Oh, sorry — she has Down Syndrome. Reboot. Let me try again:

Bringing her to term was obviously a big mistake! What a tragedy SHE is! How inconvenient for everyone involved! We can't possibly get her into advanced placement classes, or an Ivy League college! What'll we say to our neighbors? Better off just to make the "hard decision" to get rid of her. Ignore my first paragraph. Just forget I said anything ...

Dot is one in a million — actually, about 1 in 14, because that's how many Down Syndrome children are born in this country every day. And that's only because, every day, about 126 Down Syndrome children are aborted.

Is this a sore point for me? Yes. Looking at the numbers, it's hard for me to take seriously the argument that aborting a Downs-diagnosed unborn child is a "hard decision." Since 80%-90% are swept into eternity before birth, it's apparently a very easy decision most of the time. It's us 10%-20% who determine to have them and raise them who make the hard decision, one that we live with every day.

When Dot was gestating, my wife did not have an amnio — she is an older mom, and amnio has significant risks that we didn't want to take. We didn't care what an amnio would show, anyway. While my wife is pro-choice, we wanted this baby and abortion was never an option for us. The ultrasounds were suggestive of serious problems, but we were determined to have her and love her and deal with her however we had to, with God's grace.

When Dot was born, most of the alarums that were raised by the ultrasound were baseless — but she did have Down Syndrome. And she did spend her first three weeks in the NICU, and had major surgery to resolve an intestinal blockage, which happily was successful. And we began our plunge into Disability World.

When you're in the world our family lives in, certain things rise to the surface and stick to your brain. A few months ago, I read a review of a new biography of playwright Arthur Miller. It noted that Miller and his first wife had a son with Down Syndrome who was immediately institutionalized after birth. (Nobody seems to know what happened to him, by the way.) A few weeks later, in another book review about some mid-century literary couple (unknown to anyone outside of Manhattan, I guess) it mentioned that they, too had a child with Down Syndrome who was hustled off to the institution so this couple could continue their life of celebrity unimpeded. That's what people did then.

Here's what else has risen to the surface for me this year: in New York state, Carrie Bergeron, a teacher's aide, and Sujeet Desai, a six-instrument musician, were married this summer and live independently with help from their parents and social services; Lee Jones, who recently received a college degree in recreation and fitness, leads an exercise class for the disabled near Kansas City; and we were privileged to meet actress Andrea Fay Friedman, considered for an Emmy for her work on "Law and Order: SVU." All of these young people have Down Syndrome, and have accomplished things that would never have been imagined even ten years ago.

I have a cousin in her 50s with Down Syndrome, so it's not unknown to my experience. What surprised me, once we entered Disability World, is how much has changed since my cousin was born. Thanks to early and aggressive therapeutic intervention, Downs kids are doing better than ever. Dot receives speech therapy twice a week, physical therapy twice, occupational therapy every Thursday — paid for by the state of California. The local school district offers an early-start toddler class for special needs kids, one teacher per three students — also for free. After that, she will go into a Pre-K class, and be mainstreamed into the local school.

Now, in many respects, our family is lucky. Dot is highly functioning. We have great health insurance, and my wife, as a physician, makes enough to allow me to spend my days with our three kids (two handicapped). But we also rely on the great help from public agencies, which is available to everybody, to give our daughter a running start on life.

Why do people abort Downs babies? I blame two factors: one is that physicians usually aren't up to speed as to the incredible advance in treatment and education for Downs kids. The anecdotal evidence I've heard is that most OB-GYNS are fairly ignorant of the progress made in raising kids with Downs, and rely on old information from the "institutionalize 'em" days. The other factor is that easy abortion gives people a consumer mindset with regard to their own children — it makes children fungible, to be replaced by another model if found defective.

I've never been comfortable with the pro-abortion line — even as a student in a liberal seminary, or as a Unitarian Universalist minister, where the "pro-choice" position is a given, I couldn't find pro-abortion arguments convincing. (I'm now a disgruntled Episcopal layman with Eastern Orthodox tendencies). Now, that I have two kids with serious disabilities (my son has Duchenne Muscular Dystrophy), I find the pro-abortion line less convincing than ever.

Because (1) I ain't perfect, either, and I'm glad Mom decided to keep me despite that, and (2) these kids are still in the image of God. Every day, they display for me qualities of courage and love of life that humble me and take my breath away. They are also a living testimony to me about the value of human life in our world, and the blessing of compassion. And more — they remind me that the Incarnation was God disabling himself, in order to be able to share fully our life on Earth.

Living life with these children — bright, funny, loving, compassionate — has enriched me more that I can say, and gives me a glimpse of what it must be like in Heaven.

Is it hard? Yes it is, at times. Do I look longingly at families who don't have to deal with what we have to? Yes, I do. Would I like to go out in public sometimes and not deal with pitying looks, condescension, and "you're so brave?" Yes I would.

Because I'm not brave at all — not compared to these children. They exemplify courage every day. And as God is good, I have no doubt that they will spend their life in eternity freed from the bonds that restrict them on earth, even as you and I will be freed from our own bonds that may be less obvious. While aborting them may be characterized as a "hard decision" — let me tell you that holding them in your arms every day ends up being an easy decision, indeed!

Thanks, Dawn, for letting me vent!

Grace and peace,

Tragic Christian