February 25, 2005 11:10 AM

About that extra chromosome. . .Down syndrome rocks!

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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 will 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 six-year-old cutiepie we babysat for 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-eyes three-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 paradigm shift, I know. But if my counterculture years - and later, my relationship with Jesus - 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 since 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."

        Most disappointing recently was the public breakdown of geneticist/pro-life spokesperson Kelly Hollowell in her WorldNet Daily column, "When a Phone Call Changes Your Life," upon receiving a prenatal diagnosis of Down syndrome for her second child.  Someday she's sure to realize that phone call changed her life for the better.  In the meantime, she's left us with the idea that having a baby with Down syndrome is about the worst thing that can happen to a family.

        It's not.  As many expectant parents find when they seek out the real professionals - parents involved with Down syndrome on a daily basis -- who are 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 son Jonny, now  12, is a snappy dresser and an avid movie/Broadway buff, with a repertoire including songs from Phantom of the Opera, Annie, Bye, Bye Birdie and more.  He loves people of all ages, but babies make him turn to mush.  He has an uncanny way with animals.  He loves school, but that doesn't keep him from loving the thrill of snow days more.   

        At home or school or church 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 30plus 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, urging 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.

        But maybe it's just that they suffer from their own undiagnosed disabilities - blinded by a caste system of individuals based on I.Q., educability, and earning potential. Paralyzed within their "perfect" paradigms.

        Having a child with Down syndrome has helped me see there's infinitely more to life than intelligence, beauty and "perfection." It's also taught me that not everything can be measured in dollars and cents - the benefits of full-inclusion extend beyond a child with Down syndrome to his classmates, teachers, family and friends.

        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.

~~~~~~ 2009 Update: A Photo album of Jonny ages 6-17
Jonny
Love,
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Posted in Disabilities, Down syndrome, Family, Mothering, Pro-Life Issues | Permalink

Comments

This was a really lovely tribute to your son. :) Thanks.

Posted by: Mel | February 25, 2005 2:59 PM

Barbara, I found you via Mel's blog, and I'm so glad I did. I love your writing as much as I love Mel's!
I've never met a family with a Down's child (and I've known many) that wasn't happier than most other families I knew with "normal" kids. From your article, I now know why.

Posted by: Donna | June 5, 2005 12:09 AM

Just wanted to say I am inspired by what you have shared about your son. We are also blessed by a precious son who just happens to have the extra "one" too! Please stop by my website and check out his cute face:-)Who is to say what is "normal" in the eyes of God~
I also have a "blog", but it is a very different kind of blog. Find "Sweet Home Things" info at the site as well. Love, Peggy

Posted by: Peggy | June 5, 2005 4:50 PM

And you gave the world a little more--love, insight, and awe--with your words.
Indebted,
Ann holyexperience.blogspot.com

Posted by: Ann holyexperience | June 5, 2005 10:50 PM

barbara, i was having a really bad day today, until i read the above and you reminded me of the things that i love most about my zac,who is 5 and has ds. we did not know until he was born. he is child #3. he has 2 big sisters. thank you!!

Posted by: lisa | May 2, 2006 8:23 PM

Perfect timing, Barbara! (I could be wrong ... but I have a sense that I'm going to learn tomorrow at our ultrasound that our child has Down Syndrome.)

And Happy, Blessed Birthday, Jonny!

The testimony of your lives and the ministry of your family have helped to prepare me. Even if I DON'T have the blessing of hearing that our little one has Down Syndrome, my heart is in such a different place because of you all.

Thank you!

Yours,
Tara B.

Posted by: Tara Barthel | March 31, 2009 9:07 AM

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