Saturday, February 18, 2006

Children with extra challenges, and the parents who love them

Melissa Wiley writes about The Quiet Joy brought into her life by her special needs son, and by a daughter who had to fight for her life when young:

And then, two babies later (first our Rose, then bouncing Beanie), I gave birth to a little boy, and he wasn’t healthy. He was, to put it bluntly, rather a mess. Thus began the next chapter of the lesson that started during the long months of Jane’s illness. Being entrusted with the care of a child who is not physically perfect can be yes, painful and scary, but also one of the sweetest, most rewarding experiences a person can have. Do you know how much they teach us, these small, brave, persevering persons? I hadn’t begun to grasp the meaning of that whole "Count it all joy" business in the book of James until I met these children. Now I get it, or at least I get a glimpse of it. There is immeasurable joy not just in the overcoming of trial, but even—I know it sounds implausible, but it’s true—in the trial itself.

Patience, cheerfulness, courage, determination, persistence—these virtues which require such effort in me are a matter of course for this boy of mine. And so it was for his oldest sister, when she was in the thick of her ordeal. If we learn by example, then I have surely learned a great deal from my children.

Headmistress keeps running into people who look at her brain-damaged daughter and say, "I wouldn't want to live like that." As she explains in Why We Fight, "That is irrelevant to any discussion of the ethical treatment of human beings who already do live 'like that.' " She also talks about the joy of having a child "who has so little, but loves so much."

Mark and Amanda Correa had their firstborn a couple of weeks ago, more or less, and next thing they knew Nathaniel was flown off for specialized care and drastic heart surgery. Mark had set up a blog to record the ups and downs of impending fatherhood and the baby's first year, but he had no idea he'd be up against this. But he's been nothing but amazed at how Nathaniel has held on and rallied. I love this bit, from Surgery success!:

Nathaniel is out of the operating room. He's heavily sedated right now in order to keep his heart from having to do much work. He's got tubes into his chest cavity, tubes directly into his heart, tubes into his lungs, etc. As much work as possible is being done for him.

All things considered, he looks fantastic. I've never been happier to see a drooling, knocked out baby in my life.

The Correas are in a different boat than Melissa and Headmistress, because there's a good chance that now that he's had heart surgery, Nathaniel will be healthy and indistinguishable from the average kid who doesn't make such a dramatic entrance. But his parents show the same joy and devotion as the others, and the same acceptance of the difficulties along with the perks. (On the other hand, Mark is afraid they're going to drop from exhaustion, especially his wife, before they get the hang of taking care of Nathaniel without the help of hospital staff. A little encouragement from you experienced parents might be nice...)

And then there's Barbara Curtis, who blogs at Mommy Life, who says in her sidebar "I'm a mother of 12 who lived to write about it!" Several of her children, biological and adopted, have Down Syndrome, and she writes wonderfully about the experience of being their Mom. She's got those posts filed here. From this one:

In this society, for a parent without one to see something positive in a child with Down syndrome requires a paradigm shift, I know. But if my counterculture years taught me anything, it was to question prevailing attitudes. I’d really never liked the dread surrounding Down syndrome, clouding the horizon for still-waiting-for-test-results expectant parents.

On the Internet in recent years I’ve “met” a few who’ve received the dreaded news, then logged onto Down syndrome newsgroups, trying to pick up the pieces. Often they describe pressure from geneticists and doctors to terminate the pregnancy and “try again.” These professionals are quick to point out the burdens of having a child with Trisomy 21 – possible medical problems, heavier emotional demands, a child who is “less than.”

But then on the Internet, or face-to-face in their own home towns, they meet the real professionals – parents involved with Down syndrome on a daily basis, in much better position to comment on the so-called “quality of life” issues. Always there is an outpouring of loving response, personal variations on Emily Kingsley’s theme in her famous essay, “Welcome to Holland”: So you planned to go to Italy and landed in unexpected territory. At first you’re disappointed. Then you notice the windmills and the tulips – beauty you never expected to find. You discover it’s not a bad place after all.

Hooray for the Internet. When so many in the medical community seem intent on culling babies that don't meet their own quality control guidelines, how nice it is that there's somewhere anyone can go to meet parents who have learned that perfection isn't a prerequisite for joy.


Anonymous said...

MSM can do a story with human understanding, but not often. CBC National (Canada) once had an essay about new age parents trying to 'design children.' As part of the counter argument several Down syndrome families were visited.

One little girl with Downs settled the argument.
She was perhaps 12. It was impossible not to love her, the person, even in one brief glimpse.
Who-- her parents believed-- are we to choose God's children for him?

Kathryn Judson said...

johng, Thanks for the info. I'm glad to hear that CBC gave those families living with Down syndrome some airtime.

Anonymous said...

I happened upon your blog this afternoon doing my usual surf of the web. Interesting story, oh and Barbra Curtis she is amazing isn't she. She is certainly one of my favorites.

I have a daughter who is 19 months old and has Down Syndrome. She is the youngest of five. Our life stories can be found on our blog.

Kathryn Judson said...

rnp, thanks for stopping by - and thanks for having so many great links to Down Syndrome-related blogs and websites at your blog.

I believe that, in general, the more that people know about real life (not to mention real people!) living with disability, the less they'll be inclined to listen to folks who preach the "better dead than disabled" and the "it's not fair to bring a child into the world with Down Syndrome" messages that seem to be so in vogue in some circles these days. I can hope so, anyway.