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Finding the Right Words When a Baby With Down Syndrome Is Born

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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.

Friends and family who reached out in those first weeks meant to encourage us, but even their best intentions began with their own personal experiences of Down syndrome (or lack of them). Their words often reflected the same shifting range of emotions we were feeling. “Congratulations” and “I’m sorry” could be expressed in a single conversation. Cards, notes, phone calls and visits all revealed others’ beliefs or assumptions about the gravity of our son’s situation and the future they could or could not imagine for us.

“We weep with you,” were the words scrawled across one note card. Then there were the sympathy cards that occasionally arrived with poems and verses and pictures of long, winding roads, as if someone had died, as if the living, breathing child in our arms were nothing more than a wilted vegetable or a cross to bear. “This is terrible, terrible news,” they said. But we adored our son, and he was alive and well.

Then there were the false platitudes:

“God gives special kids to special parents.”

“He’ll be so innocent.”

“They’re always so happy.”

And the stories:

“I have a friend whose daughter has Down syndrome, and she’s doing great. She bags groceries twice a week and she’s always smiling.” Weren’t there other meaningful things to note about a young woman with Down syndrome?

The best words came from friends who avoided a tasteless vocabulary of platitudes or kitschy stories meant to sate our ache. They addressed the facts. “Thank goodness he’s healthy! The pictures are beautiful! He looks like his Daddy already! You guys must be exhausted! You’re going to be great parents to him.” Real words for real people who had welcomed a real child.

Friends of advanced years had the wisdom to send their simple congratulations on cards featuring blue gingham and cartoon cradles, teddy bears and worn-out rhymes, just like they did for our daughters. I kept those as evidence. I imagined showing them to our son one day as we paged through his baby book and I told him his birth story. “Buddy,” I would say, “We were sad for just a little while. We didn’t know you, yet. But we were so happy about you, too — our first and only son.” I would let him hold the cards, read their words over and over as children do. I would tell him how he always smiled in his sleep, how he loved to tuck his head under my chin to feel the brush of breath across his brow, how he stretched across his grandmother’s lap and took long, dreamy naps, how his sisters doted on him, how he had so many visitors and well wishes.

But the truth was, some words needed discarding. During our first weeks at home, I’d gather up the day’s mail and sort greeting cards, tossing sad words into the trash can where they found their forever home among the food scraps and dirty diapers. The editing process liberated me. Perhaps I was also telling myself: Just there. That’s where that feeling belongs.

The cards meant for our son’s own eyes I tucked into a basket in my room that held three baby books, hospital bands, inky footprints pressed onto card stock, and two baggies of wispy, baby girl hair. Someday he would rummage through all that booty with his older sisters, digging for treasure, unearthing the time before memory. Here now was something I could control for him and for me, the sign of the greeting card signifying the better truth, a mother’s desire. The carefully curated collection would say: Welcome home and welcome here.

A couple of weeks ago my sister called to tell me a friend of hers had just had a little girl, and at one week old, the little girl was diagnosed with Down syndrome. “What should I say?” she asked.

“Congratulations?” I suggested.

“But we already said that, before we knew about Down syndrome.”

“Say it again, tell her how beautiful the baby is,” I replied, thinking about the reminders I sometimes needed in those early days that a diagnosis would not ultimately define our son.

Later my sister texted me. She had a gift for the baby and a book for her friend. Should she just drop it off on the front step? She didn’t want them to feel like they had to visit if they weren’t up for it.

“Knock on the door,” I reassured my sister. “Tell her you came to give her a hug and you’re there if she needs anything. Make googly eyes at that beautiful girl.”

So she did. And it was just right. Her words were just right words. Because the just right thing to say when a friend is expecting or has a baby is, “Congratulations.” A baby is a baby — a gift, a miracle, a hope fulfilled. The second right thing to say is, “I see you.”

“I see you, Mama, wherever you are, in whatever state you find yourself after this unexpected news. We will party with you or we will sit beside you. We will help you find answers to your questions and connect you with people we know who are also on the journey of raising a child with a disability. But most of all, we will keep doing life alongside you.” This can be said with words, or it can be delivered with a quiet hug, a strong cup of coffee and a muffin on a bleary-eyed morning.

We do not live our lives in a vacuum. The political is also personal. And unfortunately, we live in a culture that says a prenatal or at-birth diagnosis like Down syndrome is tragic, and that people with intellectual disabilities have limited capacity to enjoy meaningful lives. But that message is a lie. Plain and simple. The truth is we all have limitations, and most limitations that exist for individuals with Down syndrome are present because our society does not make much room for people who look, learn or act differently.

A new parent doesn’t need to hear that everything will be sunshine and rainbows. It won’t, because raising kids in general is not all sunshine and rainbows. Parenting is self-sacrifice — sleep deprivation, dreams on hold, late-night trips to the ER and all the rest. What all new parents most need to hear is that they have people who will walk the inevitable ups and downs of raising a child, any child, alongside them.

“Congratulations. I see you. Let’s do this together.” It really is as simple as that.

Getty image by Tatiana Dyuvbanova.

Originally published: October 6, 2019
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