The Moment I Realized I Was Wrong About You, Down Syndrome

Dear Down syndrome,

I wasn’t scared when the doctor first spoke your name. I sat there staring at the high-risk obstetrician, soaking in his words but believing our child would be exactly who God intended him to be. Still, I couldn’t help but notice how quickly everything changed.

Just days earlier, I was greeted at my prenatal appointments with joyful smiles and words like, “Let’s see how that baby is doing!” Once you were discovered, the appointments were never the same. The joy and the smiles were replaced by awkward silences and strictly clinical evaluations. Once friends and family heard about you, nobody seemed to know what to say. Questions about baby names and nursery colors were replaced by questions about you.

All our plans to have our baby in the local hospital went out the window. Our child would need surgery at birth because of you. So, I gave birth to our son in an unfamiliar place surrounded by complete strangers. Because of you, I needed an emergency c-section. Because of you, I didn’t get to hold our son when he was born — he was sent directly to the NICU. Because of you, he spent 47 days there.

I was pretty mad at you, Down syndrome.

After 47 days of being a visitor in my son’s life and hearing only grim predictions for his future, I was worn down. I was angry you had our son. But then, the day we’d been praying for arrived and he came home. And that’s when it happened.

I took him out of the car seat and I held him in my arms in our home. No wires attached to machines, no beeping, no strangers — just my baby and me sitting in our living room. That was the moment I realized just how wrong I had been. First and foremost, you never had him. He had you.

Second, I was wrong to be angry with you. I should have been angry with the doctor who suggested we abort our son just because he had you. I should have been angry with the nurses who wouldn’t look me in the eye or ask about our baby anymore just because he had you. I should have been angry with every person who acted like I’d lost my mind because I was still happy to be having a baby even though he had you. I should have been angry with every medical professional who based our son’s prognosis on outdated information about you. I finally realized you, Down syndrome, were not the “problem” that had caused our family so much pain.

You, Down syndrome, are a part of our son. Our beautiful, happy, dear, beloved son. I believe you are a part of who God created him to be. There’s no more anger toward you. There’s only acceptance, understanding and love.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.