Down Syndrome: ‘What Are You Going to Do?’

The reality of having a child with Down syndrome that is you become part of a new extended family

‘Joy’ (photo: Eleonora_os / Shutterstock)

“Her baby brother may have Down syndrome,” my daughter said as we drove home from school.

Instantly, I felt transported back to 2007, when I received a call from my longtime doctor and friend saying, “Sherry, the tests indicate …” and I pulled into the grocery store parking lot to let myself deal with the thousand thoughts flooding into my brain.

I knew this mom didn’t have just one worry but a thousand worries, as if all the unknowns were there demanding from her an answer to the question: “What do you want to do?”

That question was a subtext for another question: “Do you want to abort?” In my case, my OB-GYN knew me well enough to know that it wasn’t an option. But the genetic counselor at the ultrasound place did not, and went out of her way to make sure she asked me each time I came back for further screenings (he had a heart issue): “What do you want to do?”

The world wants you to have all the answers — from preschool diet to after-school activities to college — pre-imagined and possibly registered while the child is in utero. This lady did too. She worried I didn't know all the answers or realize the reality.

“You know, you have other children. You can have other children. They might not have ...” Thankfully, I said, “We’re keeping our son. His name is Paul. Please stop asking that. It’s rude.” I used my indoor voice. It wasn’t easy.

Motherhood is hard enough with all the unknowns that continue to be a puzzle long after kids can walk, talk and operate the television better than you. No one expects any parent, whether a veteran or rookie, to have all the answers. But after this diagnosis is announced, the question gets asked more often: “What are you going to do?”

The answer remains, “I don’t know.” Because we don’t yet know this person. We know only the diagnosis (like we know the sex or the gestational age) and all the unvoiced worries. What if he can’t speak? Who will be his friends? What if I outlive him? What if he outlives me? What sort of job could he do? How handicapped will he be? Will he be able to talk? Will he be potty trained?

All these worries hover and jostle for position. What if he needs surgery? Will he survive to that point? Will my heart break?

The answer to most of these questions is: Time will tell.

The answer to the last question — will my heart break? — is Yes, if you love him. If you love him, your heart will break when he’s not picked to play basketball. When he’s asked to lead the Pledge of Allegiance, it will break with pride. Your heart will soar when he sings along to the radio, and weep when others don’t realize that he’s offering them the chance to sit with him. Your heart will be constantly pulled by a child with Down syndrome, as you discover all the victories you didn’t know existed. They, like every child, are so much more than their diagnosis.

They will amaze you by flipping over at two months, surviving open-heart surgery, and running a 5K at the age of 12. You will learn to celebrate the victories in life that get passed by at 65 miles an hour most of the time. It is not romanticizing to say this, but it is the reality of loving someone with Down syndrome. Your expectations for your child are not lowered; they are changed. They are grounded by the diagnosis, because things will always be harder for this child, but they also are grounded in the reality that this person has things to offer, to you and the world, that the diagnosis does not cover and cannot explain or anticipate.

The reality of having a child with Down syndrome that is you learn to live with and love a mystery that wants to be loved. You also become part of an extended family.

We saw my daughter’s friend and family at Mass that following Sunday. After Mass, we went over and hugged. I remembered a Sunday 14 years ago when I took my children to Mass at a different parish so they could see a young man who worked as an usher every Sunday. I wanted my children to see someone and discover that it’s not so scary. That young man witnessed to me and mine the more we did not know or expect, and so we asked the ushers at our parish this week if they could train my son. The answer to that probing question, “What are you going to do?” is the same as it is for every child we ever receive from God.

What do you do? You love them and spend a lifetime discovering who they are.

Pope Francis blesses a child with Down syndrome May 18, 2013, in St. Peter’s Square at the Vatican.

Down Syndrome Awareness, and Prayers for Haiti (March 16)

Looking ahead to Down Syndrome Awareness Day on March 21, developmental psychologist and mother Mary O’Callaghan sheds light on the joys and challenges facing families who receive trisomy-21 diagnoses. Also, Father Louis Merosne, pastor of the Cathedral of St. Anne in Anse-à-Veau, roughly 80 miles west of Port-au-Prince, describes the fear and the faith of the Haitian people.