“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!”
Fast forward to his senior year of high school, when Jonny was voted Homecoming King by his peers. Shocking? Only if you haven’t seen it already in your community or on the nightly news. It’s a growing trend across the country – individuals with Down syndrome elected as Homecoming Kings and Queens noted by USA Today.
A giant step forward for humanity – especially when you consider that babies with Down syndrome were routinely institutionalized (on the advice of doctors who used the same arguments used today to push abortion), and just 20 years ago their school experience was limited typically to separate trailers and buses.
While the theory of inclusion was that kids of lesser ability could benefit from side-by-side education with their “normal” peers, what no one realized was that the “normal” kids would benefit from rubbing elbows with those who’d been stigmatized for generations before. Nowadays, it’s smiles and high-fives for people like Jonny. And voting for special classmates for Homecoming King or Queen isn’t really a stretch at all for kids who’ve grown up as Ms. Bessie described – more loving and caring because they were introduced to people who were just a little different too early to develop the fears their parents had.
And yet fear abounds among the current baby-bearing generation. Most did not grow up with inclusion and are vulnerable to the doom and gloom offered by those medical professionals who preach heartache rather than hope: Your life will be complicated, they have medical problems, they will drain your finances, they will ruin the quality of life for your other children. Better just to end this pregnancy and try again – as though life were just a roulette wheel.
But life is not a roulette wheel and people expecting a baby with Down syndrome are not losers.
Ask Lisa about how her brother Stephen has affected her life:
My sister Julie and I are only 17 months apart in age. We were 10 and 11 ½ years old when our brother Stephen was born (with Down syndrome). Once my sister and I were grown and married, we both went on to adopt children who have Down syndrome because of Stephen’s amazing impact on our lives.
Stephen is sweet, kind, compassionate, helpful, encouraging, loving, sensitive and fun. The person most likely to put others’ needs first. He brings joy to everyone he meets and he is my favorite person.
Stephen has always given me a different window or perspective into seeing what God is like and how He knows more about what is important than the world. IF the world thinks that people who have Down syndrome are “handicapped,” then surely God sees the rest of us as “handicapped” in a way that people with Down syndrome are free from. I believe that people who have Down syndrome are freed from much of the worldliness and selfishness that typical people become entangled with.
If my brother had never been born, I am sure my family would lack the sense of warmth and connection that Stephen brings. We love each other and I know we would still be close, but Stephen is like the extra glue that brings more joy to our relationships and times together.
I believe the gift that God gave my family by giving us a child/ brother with Down syndrome was one of the most amazing gifts we could ever have received. I only wish more people could experience this overwhelming gift, and see it as just that.
Down syndrome has brought only blessings to my life!
If only people like Lisa could deliver the results of the new blood test! If only parents could be given hope instead of heartache with the news that their child will be a little different than they might have planned! If only all parents could trust this mysterious part of God’s plan!
Barbara Curtis and her husband Tripp have 12 children - including three sons with Down syndrome adopted after Jonny's younger sister Maddy was born. Barbara is author of 9 books, including Lord, Please Meet Me in the Laundry Room: Heavenly Help for Earthly Moms, and she blogs daily at MommyLife.net.