July 11, 2007

The Blessings of a Least Of These Downs Syndrome Child

Virginia is the mother of a young adult with Downs. She grieves for the children who would have been her daughter's friends, had their parents chosen life.

This is the future of children with the genetic predisposition for autism if the gene track is put at the forefront of research.

Not healing our children, eliminating them.

I will say it again, disabled children are a blessing. In the pain and the struggle all the unimportant crap falls away and as Virginia notes, you have to slow down. Life becomes purposeful by necessity.

If we do not come together to serve these children, not the disorder, not the research community, not a medical program, not the pharma infrastructure, not non-profits, not even the parents, but the best interests of the child in front of you, and then the next child in line, then we just move faster and faster down the road toward moral bankruptcy.

What has happened to children with Downs must not happen to our children.

Virginia Arbery: Ending Down syndrome pregnancies bears all the marks of a pogrom
Dallas Morning News
09:06 AM CDT on Sunday, July 8, 2007

The year Julia was born in New Hampshire, 1987, I was the only geriatric pregnancy in the state issuing in a Down syndrome child. When I recovered from the pediatrician's insult – I was 37 – I learned from him that the other nine mothers in the state to deliver Down syndrome babies were still in their 20s.

I asked him why this was the case; conventional wisdom had led me to believe that the likelihood of giving birth to a Down syndrome child increased with maturity. When he told me that most woman over 34 usually had amniocentesis done to avoid giving birth to a Down syndrome child, I was stunned. After first being dismayed by – what to call it? – my demographic solitude, I soon turned my attention to what Down syndrome meant practically for my new infant. The books we quickly read, and the instruction from excellent social services helped us. Operating outside the realm of reason and structure were other powerful supports – call them graces.

At the end of Julia's first week, I learned that a publisher friend of ours had lost his wife to colon cancer. We had known them since graduate school, and the widower came over to tell us that his wife gathered their eight children around her bed to pray for Julia and us every night of that first week.

Even as she said goodbye to her own children and to the infant she had given birth to – an operation might have saved her and killed the baby inside of her – Susan was thinking about our challenge. I felt a liberating happiness over Julia, as did our little girls and their dad, for reasons too deeply private to explain.

Julia's life soon began to bring out the excellences of others. She brought our little college community even closer together, a joy to the students and a prize to anyone who held her. Early Intervention trained us to stimulate areas of her brain by waking up facial muscles, working to get her to sit up or to crawl – a task she never mastered, scooting instead with her two hands and bottom.

I would go from teaching the Declaration of Independence and the Federalist Papers, to a large room uptown with five other mothers propping up their floppy babies. Nothing else has ever quite brought home the meaning of "all men are created equal endowed by their Creator with certain unalienable rights and among them are life, liberty, and the pursuit of happiness."

We were all working for that fullest expression of life and happiness for our babies. I thought about the "prudent" mothers who had aborted their own children with Down syndrome. I grieved for those who, exercising their reproductive rights – a new appropriation of the older notion of liberty, which was rooted in duty – would never know the profound satisfaction of raising such a child.

I will never forget Julia's first birthday with all her sisters around her. When we finished singing happy birthday, Julia put her hands together and clapped for the first time. Of course, we all cried on cue. Things that were so ordinary for the others became accomplishments – triumphs.

Julia slowed us down, and, instead of waiting for each stage of development to naturally emerge, we would coax it along, beckoning it with intentionality and art. She taught each child an intelligence of the heart, and she began to teach me patience.

Each member in our family could give a personalized account of his or her relation to Julia. Every daughter, for instance, has a perspective on her own vanity because of her. Julia expected to be 3 inches taller when she turned 16; I solved that problem by buying her 3-inch platform wedges.

But often it's not that simple. For instance, on the way to school she will pull down the visor mirror, look at herself, and say, "When I get to heaven, my eyes are going to be like my sisters', and I am going to be 5-foot-11, and my voice is going to sound like Kelly Clarkson's." I tell her that God made her the way she is, that she wouldn't be Julia any other way, that we love her just as she is, and that she is beautiful.

Of course, not everyone thinks that way. Some told me I should not make the same mistake twice – to have my tubes tied. I'm glad I didn't. Our one son was born after Julia, when I was 40, and our seventh daughter – now a sophomore at Ursuline – two years later.

Our son just graduated from Cistercian Preparatory School. Over the past few years, he and his classmates have helped to organize the bi-annual Down syndrome Dance. Will's friends love Julia, and she shamelessly loves them back. They'll all be here at her 20th birthday party Tuesday. She will probably sing "Desperado," as she did at the recent graduation of two of her sisters, belting it out on key and bringing the house down.

I understand that the American College of Obstetricians and Gynecologists is offering women a safer method than amniocentesis to determine whether a child has Down syndrome. The College makes the argument that it is more responsible to inform parents of their options beforehand so that they can decide whether or not to let the baby live.

This argument shakes me to the core, for it bears all the marks of a pogrom – the license to be aggressive against the most benign population conceivable.

Until now I have never been an advocate of special needs' issues. I have quietly reared my daughter and her brother and six sisters. But I can remain silent no longer. Twenty years ago, many of Julia's potential friends who are like her were intentionally eliminated, perhaps out of fear or perhaps out of a desire for a regular family with regular children.

I think of those thousands of children who will never change those families for the better. They will never be at a Down syndrome dance, never hug their grandmothers, unafraid of their wrinkles or of people's imperfections. Who will love us as well, as simply, with such undesigning candor if we invent a world protected from our difficult blessings?

Ironically, scientific work on turning off the additional action of the genes that cause cognitive impairment in Trisomy 21 now offers more hope than ever before, especially at Stanford School of Medicine's Center for Research and Treatment for Down Syndrome (dsresearch.stanford .edu). More research dollars are going into killing these children before they are born than into this noble project of helping them. And why? Because citizens value their freedom?

Are my husband and I less free because we might have Julia with us our whole lives? Hardly. We would probably be enslaved to many more false notions of reality. In any case, we must trust that there will be a meaningful work and life for Julia. Maybe one of her sisters will take her in. Maybe she'll live in a group home.

These are all decisions we will have to make as a couple, as a family and with Julia. These will not be easy decisions. One thing is sure, though: She is our defining blessing. How could we have known that in advance? To accept her full humanity is to accept our real selves in all our imperfections.

My son put it well in describing how Julia likes to personalize her lead pencils, tapping them on the table top as they become characters in her daily life – at school or at home. We will sometimes hear ourselves oddly repeated in her animated version of our loss of temper or other foibles. In describing this game Julia plays, our son wrote that as she taps her pencil people, she taps into us.

Virginia Arbery teaches in the Master of Humanities Program at The University of Dallas and is the mother of eight children. Her e-mail address is varbery@sbcglobal.net.

1 comment:

Grace 77x7 said...

I cringe as I read the news articles about the race to find the genes behind autism because I fear that people will use that information to abort babies who might be autistic instead of using it to help them.

People are already aborting babies with minor, fixable defects like cleft palates and such. Don't they realize that, if we start eliminating all the imperfect, there won't be anyone left?

(Weediness is so much in the eye of the beholder, after all. I would much rather have my beautiful children with their neurological challenges than some of my relatives' children who only care about what the pack is currently wearing, doing, & saying. There's socially impaired, but there's also social impairment!)