What I Should Have Asked When My Son Was Born With Down Syndrome

We had a lot of questions when our son was born with Down syndrome.

Troy on the right, with his typical twin and Trenton, my husband

Why was this happening to us?

What health problems will Troy have?

Would he be high functioning?

Will Troy ever play with his typical twin brother?

Would we ever be happy again?

All of these questions focused on how Down syndrome would negatively impact our lives. Most of them revealed my husband Trenton’s and my utter ignorance when it came to Troy’s diagnosis. Some of our doctors and a quick Google search didn’t help matters. They seem to perpetuate only the pathology of Down syndrome — completely missing the beautiful life and possibilities I held in my arms. Of course, hindsight is 20/20 and the reality is, just like parenting any child, you never know how your life will change until you walk down that path. So, if I could go back to that sad, scared mama almost five years ago I’d whisper one question into her ear:

How could Troy transform our family for the better?

It’s not a question that doctors or Google could ever answer. It’s not a question that even came to mind in the midst of the overwhelming grief of what should have been. It wasn’t until I could let go of the should’ve/could’ve beens, that I realized how beautifully made my son is and how Down syndrome can open unexpected doors for myself and my family.

Acceptance of Down syndrome became our silver lining.

Ironically, we didn’t accept Down syndrome that easily. We wrestled with the idea of it constantly those first few months of Troy’s life. It wasn’t until we accepted our son, that we accepted Down syndrome. You may have heard the sayings “my son is not Down syndrome” or “when you’ve met one person with Down syndrome, you’ve met one person with Down syndrome.” In my opinion these sayings are at once completely true and false. It wasn’t until Troy’s personality revealed itself (that first smile, the way he looked around for his brother whenever he wasn’t near, later when he woke up early every morning just like his daddy, or loved to bust a move like his mama), that we realized we would be happy again. Troy is unique and ours. Down syndrome doesn’t define him, but Down syndrome has found a place in our heart and has emboldened us to live better.

Our family has become champions of Troy and all people who are different or vulnerable to misunderstanding. My husband had just graduated from Medical school when Troy was born. All he saw when he looked at Troy then was health problems related to Down syndrome. Now, he sees someone who loves life in spite of all that. This has changed the way he doctors and sees his patients. It’s made him more compassionate and caring.

Hunter and Troy, almost 5 years old

I’ve fully embraced my role as lead advocate in our household. I created a blog because of Troy, and will now train as a special education advocate to help other families. Although each of our loved ones with Down syndrome are unique and different, there are issues that bind our community together. We must stand together to ensure our loved ones get the support they need to be included in every aspect of society, whether that be school, employment or our health care system. Five years ago, I couldn’t imagine myself presenting in front of my state legislature about a bill that I advocated for, but this fall I will do just that.

Even Troy’s twin brother already has a sense of advocacy. Hunter gives me daily reports about what Troy did in school, and is quick to tell us what Troy is saying when we can’t decipher his sometimes jumbled words. They say siblings of individuals with Down syndrome often lead lives of service and honor, and I can imagine that for Hunter based on his actions now.

Troy leads by example. He’s always polite and congenial. When Troy walks into a room, everyone takes notice. He’s loud and boisterous. He wants to be heard, and he will. As will we!

I don’t think much about how life could have been with two typical boys, but when I do, I realize we may not have been as close, strong and empathetic as we are now.

How has Troy transformed our family? In countless, magical ways…that’s how!

Follow our journey of advocacy and inclusion at www.inclusionevolution.com.

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