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My 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 in 1993 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 would be a challenge, so many things to learn. It helped that we already had a few "normal"
children. But other things had opened my heart as well. There was Amy, a
6-year-old cutie pie for whom we baby-sat now and then. Amy's dad had left
shortly after her birth - just couldn't get into having a daughter with Down
syndrome. On the brighter side was the dad and daughter duo I'd seen
a month before, riding the merry-go-round. A gleeful almond-eyed 3-year-old, a
father helplessly in love. There's something special here, I thought. In this society, for a parent without one to see something
positive in a child with Down syndrome requires a shift in thinking, 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 on to 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, the scientific term for Down syndrome: 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. My own son Jonny, now 7, is a snappy dresser, an avid film
buff, and a splendid host. He loves playing soccer and hearing both sides cheer
whenever he kicks a goal. At home or school he is the first to offer help, to
comfort someone who's down and to laugh uproariously at the punch lines. His preschool teacher named him ambassador of goodwill. His
public school kindergarten teacher, after 30-plus years of teaching, said she'd
never seen children as loving and caring as Jonny's classmates. The secret, she
said, was Jonny. When he graduated from her class, she wrote us: "As the
Bible says, `The Lord does not look at the things man looks at. Man looks at the
outward appearance, but the Lord looks at the heart.' Jonny certainly taught the
children and me to look at the heart; for he has a very big heart!" Both confirmed what I'd seen all along. Jonny has a way of
breaking the ice before others can think too long about their response to a
child who is, well, just a little different. Then he brings out the best in
them. In fact, I bet some people would rather spend a day with
Jonathan than with the experts who comment on his right to exist. There's Princeton professor/ bioethicist Peter Singer,
endorsing the right (or duty) of parents to terminate the life of a disabled
child up to 28 days after birth. Or Bob Edwards, world-renowned embryologist,
predicting it will soon be a "sin" (his term) for parents to give
birth to children with disabilities. This would seem a giant step back for our enlightened
society, which a generation ago ceased banishing children with Down syndrome to
institutions, making it possible for them to grow into productive members of
society. In a culture working overtime to root out prejudice and prosecute hate,
these "expert" voices sound suspiciously supremacist. 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?") 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. This article originally appeared in the Washington Post. Copyright Barbara Curtis 1999. Reproduced with permission. Barbara Curtis is an author, freelance writer, and now mother of many including three through adoption. She lives in northern California. Visit her at www.barbaracurtis.com |
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