The First Time I Had to Explain My Baby’s Down Syndrome to a Stranger


It took exactly five months and two days for it to happen. Really, it was only a matter of time.

When I first started bringing my son Anderson out of the house six weeks after he was born, I lived in fear of this moment. Down syndrome was still raw to me then. As I buckled Anderson into his car seat at a Panera across town today, a lady with a wide smile and glasses came over.

She said, “He is just adorable.” Anderson smiled at her — he gave her one of his best full-opened mouth chuckles. She laughed. Then she said, “He has the most interesting almond-shaped eyes.”

Gut check.

I had a choice. I could side-step the issue and leave or I could actually advocate for my son in the flesh and not just from behind a computer screen.

I said to her, “That’s because he has Down syndrome.” Her eyes got big behind her glasses. She said, “But you look so young for this to happen to you.”

My body temperature started rising, but I thought to myself, “Grace. Give her grace, Jill. After all, that’s exactly what you thought when you got the diagnosis.”

I told her there is a common misconception that babies with Down syndrome are only born to older mothers when in fact most babies with DS are born to younger mothers like myself. She looked surprised.

She asked me when we found out. I told her halfway through the pregnancy. “Twenty weeks! Oh that’s tough…”

I started sweating because I knew what she was getting at. To her, 20 weeks presented a more difficult decision than it would have been at 12 weeks. Her voice started to trail off because Anderson started giggling. Thank God.

I talked baby talk to him and then I looked at her with a smile and I said, “It wouldn’t have changed anything had we found out earlier.”

She called her husband over to meet Anderson. She said, “Look how alert he is. Look how he tries to copy your sounds!” I think she was honestly amazed by him.

She asked me if I knew anything about his prognosis. I told her just like all humans are born with different abilities and limitations, so are people with Down syndrome. But I added, “I know this boy is going to do amazing things.” She smiled. Anderson smiled some more, of course.

I looked down at my watch and I realized we had been talking for a half hour. She said to me, “I hope I didn’t offend you. I’m a little embarrassed. I thought maybe he had an Asian father.” I started laughing and I told her if that were the case, I’d be in big trouble with my husband.

As I started to walk away, I heard her say, “What a nice lady.”

Happy tears filled my eyes. Not because a stranger thought I was charming, but because I knew Anderson had an impact on her.

I know this woman walked away with a different perception of Down syndrome. I believe if someone in her life were to receive a Down syndrome diagnosis, she would tell the story about meeting an adorable, smiley and bright baby who also happened to have DS. Maybe she’d even mention his mother who admitted that even though the diagnosis was extremely hard, five months later she said she wouldn’t have it any other way.

During this incredibly difficult time as we wait for surgery, I can’t stop smiling today. I’m smiling because I know it’s just the first of many hearts my son will change. I’m smiling because I not only get to witness these moments happen, but because I get to participate in them as well.

Today I am smiling because the thing I feared the most, the thing I wept over night after night, the thing I thought would end life as I knew it… five months and two days later I can say I’m thankful for Down syndrome.

A version of this post originally appeared on News Anchor to Homemaker

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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