Children with Down Syndrome Bring Joy
- Friday, December 16, 2011
“Wouldn’t the world be a better place if every family had a kid with Down syndrome?”
I’ll never forget my 9-year-old son Matt saying this one day – really less a question than a statement of how our family had changed since Jonny, our #8, was born with Down syndrome in 1992. We were all surrounding Jonny on the floor that day, alternating tickling and tummy-kisses with stretches, compression and massage to build his muscle tone, working to prepare him to walk independently.
As I looked around at my children, my heart swelled. There was no denying that we were different – individually and collectively. Yes, indeed, the world was a better place since Jonny was born, and we were better people – more compassionate, tender, patient, sensitive, giving – with a truer perspective on what mattered most in life.
I thought of this recently when the news broke of the latest test for Down syndrome – a simple blood draw at 10 weeks – hailed as a vast improvement over amniocentesis, which involves a long needle into the belly at 15-20 weeks and carries a risk of miscarriage. While over 90% of prenatally-diagnosed cases of Down syndrome currently result in abortion, since only 2% of pregnant women opt for this risky procedure, many babies with Down syndrome have continued to make it out of the womb alive.
But now a simple blood test could change everything. While it’s one thing to receive a diagnosis while holding a sweet and cuddly baby, it’s another to get a phone call when you’re barely into maternity clothes. Fear and compromise creep in, especially with pressure from doctors and geneticists insisting that the birth of a child with Down syndrome will bring suffering to all concerned – to the parents, the baby, and especially the siblings, whose quality of life will suffer from having a brother or sister who is somehow “less than.”
But are they truly “less than”? On November 14, USA Today carried a column by Brian Skotko, a physician at Children's Hospital Boston, titled Will America cull people with Down syndrome? in which he cited a study concluding:
99% of parents say they truly love their son or daughter with Down syndrome; 88% of brothers and sisters say they are better people because of their sibling with Down syndrome. People with Down syndrome themselves spoke up, too: 99% are happy with their lives, and 97% like who they are. My sister with Down syndrome certainly does. (I often wonder: How many Americans can say the same?)
Some may wonder how a child considered “less than” by most of society could have that kind of impact. All I can do is share our family’s experience.
Yes, meeting Jonny’s early needs refined our character, built a stronger unity and gave us a sense of purpose. But through the years it became obvious that God had a purpose for Jonny’s life as well. After all, he was the one who brought out the good in everyone – simply by being himself. 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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