The Gift of Parenting a Child with "A Little Extra"
- Tuesday, December 11, 2007
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!”
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