October 28, 2009 9:11 PM
Down syndrome - a life-changing adventure
I've run this before, but since October is National Down Syndrome Awareness Month, and since there are always new readers here, and since I just updated this to run in a local parents magazine, I thought I'd run it again.
Love this boy!
A LITTLE EXTRAMy son Jonathan has a little extra. A little extra enthusiasm, a little extra innocence, a little extra charm. Oh, and did I mention an extra chromosome? The one on the 21st pair that inspires so much fear in parents-to-be.
I suppose at one time I was fearful about Down syndrome. But on March 31, 1992 when they placed the blue-blanketed bundle in my arms and I could see he looked - well, just a little different - I actually felt a sense of awe. Here will be a challenge - so many things to learn.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 expectant parents.
On the Internet in years since I've met hundreds 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 online 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.
My own son Jonny - now 17 - may not be Harvard material, but he's made a major contribution to the lives of his classmates and his community. What he has a soul - and he knows how to show it. At home or school he is the first to offer help, to comfort someone who's down, and to laugh uproariously with his friends.
His 30-year veteran kindergarten teacher said she'd never seen children as loving and caring as Jonny's classmates. The secret, she said, was Jonny: "He taught the children and me to look at the heart; for he has a very big heart!"
For 17 years he's taught me - and others around him with hearts willing to learn - how much more there is to life than intelligence, beauty and "perfection."
Before Jonny's birth, I'd prepared announcements with a line from Elizabeth Barrett Browning: "God's gifts put man's best dreams to shame." I sent them proudly, adding a note about his extra chromosome and our great love for him. (One friend's comment: "Well, Barbara, he'll never be president, but isn't that just as well?" And this was 1992!)
He's been a gift I never would have thought to ask for, bringing lessons I never knew I needed to learn. The greatest surprise is this: Our life together has been less about my helping him reach his potential than about him helping me reach mine.
Sometimes when we're in a museum or a mall, in the middle of a good laugh, I catch someone off-guard, looking uncomfortable and standoffish. I know that as long as we live some will see Jonny as having a little less. I've learned he has a little more. And so does our world because he's here.
Want to see more Jonny? Here's his album:
 |
| Jonny |
Posted in Down syndrome, Family | Permalink
Comments
Barbara,
You mentioned that "At home or school he is the first to offer help, to comfort someone who's down, and to laugh uproariously with his friends." One Sunday at mass (months ago) my family was seated a few rows behind your family, and I noticed Jonny comforting one of his younger brothers, Jesse or Daniel I think. I don't know what was wrong, but I was impressed to see Jonny with his arm around the younger boy, comforting him. I am sad to say that in my family, I can't picture either of my children comforting the other like that, especially at mass. They are more likely to be bothering each other and their father and I have to intervene and separate them. You are blessed to have such a loving family.
Posted by: Donica | October 29, 2009 9:00 AM
