Editorial

The following is an editorial from the "other WS mother" in town. Again, I find it strange I am now receiving signs like this that gently remind me of this other family's presence in town when I heard and saw nothing of them for two years. Maybe my eyes, ears, and heart are more open than they used to be.

Anyway, it's a beautiful piece of writing, and I would like to share it with you.

Note: For the purposes of anonymity, I have very reluctantly removed her name and identifying information. I wish I could give her credit and say thank you for giving us all hope. Hopefully, I will be able to in time.

-- N

WORLD WOULD BE A POORER PLACE WITHOUT DISABLED CHILDREN

Last week, (this paper) reprinted a story from The New York Times about the efforts some families are making to persuade others that having a child with Down syndrome is not the end of the world. That story's been on my mind ever since, in part because of my own family's experience with a similar issue.

Thanks to simpler, earlier genetic tests, it's now much easier to determine if the fetus a woman carries has the chromosomal irregularity that causes Down syndrome, a condition that generally causes mental retardation and with which most Americans are at least marginally familiar. In fact, the American College of Obstetricians and Gynecologists has begun recommending that all pregnant women be offered the opportunity to screen for Down syndrome, a dramatic shift from the previous position that saw the offer come only if a woman were 35 or older. Of those screened, 90 percent who carry a baby with Down syndrome have chosen not to see the pregnancy to term.

I can understand why. Most people have no real understanding of what it is like to live with a child with intellectual and physical problems, and it scares them. Kids with Down syndrome often have heart problems; families worry that they'll spend too much time, too much money and too much love on a child, only to have it slip away in the end.

They worry, too, about such things as "quality of life." How can a kid who may or may not ever learn to read really get much out of being alive, they may ask themselves. If life is a constant struggle, they may believe, it might well not be worth living. They worry about the future - how will a child with Down syndrome live as an adult, and what will happen to him or her when the parents are gone.

And, perhaps most important, they worry about their own ability to do right by a child who comes into the world with built-in disadvantages.

Each one of those issues is worth considering. I know, because my youngest daughter, Mary, has a genetic defect that causes Williams syndrome, a condition that, like Down syndrome, comes with medical and intellectual challenges that never go away.

I also know, however, that each one of those issues can be larger in imagination than it is in reality. Mary is very lucky medically. Her health problems have been relatively easily dealt with, and we've kept up with them as they've cropped up. We have not had to face heart surgery or any other major health crisis, and I'm very grateful for that.

When Mary was diagnosed at age 3, we were told she would be able to make her needs known but not much else. She was unlikely to read or to engage the world around her in any serious way. We went home devastated.

The intervening 18 years have proven the doctors wrong on a daily basis. Mary reads, and she reads darned well. She is fully independent in such things as personal care and can prepare her own meals if she must. She makes her own appointments on Dial-A-Ride, manages her own medications, takes classes at (the community college) unaccompanied, and so on. Yes, she needs help with finances, but, then, sometimes so do I.

And, most important, she's a delight to be with. Going to a restaurant with Mary is a treat - we almost always run into some non-disabled young man or woman who attended (high school) with her and wants to chat. She's warm, sympathetic and capable of deeper insights than you might expect. Her reactions to the ups and downs of life are normal, though her way of expressing them might strike some as quirky on occasion.

Rearing Mary has had its challenges, to be sure, but, then, so has rearing her non-disabled sister. They've been different challenges: I worry more about Mary's ultimate place in the world than I do Anna's, but I worry more about Anna's ultimate happiness than I do Mary's.

Children, disabled or not, do not come into this world with guarantees, the way cars do. Rather, we discover as we go just what arrived in that squalling little package, and most of us learn when we must how to deal with the differences that make each child unique. For a kid with an intellectual disability, those differences are written plainly on their faces; for others, the discovery might take more time and effort.

Mary and those like her make the world a far richer place, I believe. They have lessons to teach - about patience, about the value of work, about perseverance. They have love to give, and laughter, and, yes, tears. I cannot imagine what a gray old place this would be if all kids with discoverable problems simply were never born. I do know we'd be a poorer world for it.