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 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.
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 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,
In years since I’ve met many parents whose prenatal diagnosis was accompanied by 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.”
Which makes it hardly surprising that – even with a significant rate of error - ninety percent of prenatal diagnoses today end in abortion.
Parents who seek more information – as well as those surprised with a postnatal diagnosis – must be surprised by the hope they find when they connect with the real professionals: parents of kids with Down syndrome. For no matter how devastated they may have been emotionally when their child was born, parents almost invariably come to treasure the gift that they’ve receive, as in Emily Kingsley’s 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 is a hip and clever guy with a gift for acting and making friends. 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.
For 15 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.”
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 from the beginning and continue to see today. 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.
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.
Barbara Curtis is a wife, mother, author, and freelance writer who went on to have another “normal” daughter, then adopted three babies with Down syndrome – now 12, 11, and 7. She blogs daily at http://www.mommylife.net/ and invites you to enjoy a Web Album she created last Mother’s Day to celebrate mothers and children with Down syndrome.
**Featured Photos: Catherine and Nolan, Christie and Carly, Susan and Duncan, Kimberly and Charlie. Taken from Barbara Curtis' Web Album.