Right Words

Kaleb at 18 months

Happy National Down Syndrome Awareness Month! In honor of this special month, I'm sharing an article I wrote for The Mighty about what to say to new parents of a child born with Down syndrome. Nearly nine years ago, Kaleb entered our world--our sweet baby surprise. In the article, I look back at some of the wonderful and not-so-wonderful reactions people had to Kaleb's diagnosis and share a recent story of my sister and her friend who welcomed a little girl with Down syndrome into their family this past summer. Friends, in the words of a fellow parent I just met this past Sunday, "I wouldn't change anything. We've enjoyed our daughter so much." Yes. Yes. Yes. Down syndrome is not the frightening diagnosis we at first imagined. Our children are each an essential part of our families. We will never stop celebrating that; we will keep advocating; but most of all we will walk with full and grateful hearts that this road is one we each have the privilege to travel.

"January, 2011. A winter storm that had raged for days was dumping record-breaking drifts of snow on the city streets outside the hospital. Inside, an exhausted mama and daddy met their son for the first time. Congratulations circled the delivery room and everyone sighed relief at the baby’s high Apgar scores. And then there were the sudden and unexpected signs — a wide gap between his first and second toes, an unusual curve to his pinky and index fingers, beautiful, almond shaped-eyes — that led to a blood test and later, a diagnosis. Down syndrome.

This is our son’s birth story. Even though it was our third time around the parenting block, the unexpected news that our baby had Down syndrome threw my husband and I off course. We were shocked. We were sad. We were totally in love with our boy..."

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