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To the Moms of Kids With Down Syndrome Who Paved My Road

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I felt helpless and lonely today. I felt like one in a million where the other 999,999 people around me couldn’t relate, nor would they ever. That’s because they’re not raising a child with Down syndrome, like me.


Then I logged on to Facebook.

A friend, who lives about two hours away, had just posted something about her son’s extra chromosome making him extra challenging in the behavior department. I giggled, as that’s the very same thing I’m struggling with right now. Then I realized, I’m not alone. I’m just having a bad day.

What would I do without social media? What would I do without all the help that’s out there? I’m talking about the books, the Facebook groups, the chat rooms and places like GiGi’s Playhouse. They’re my lifeline right now. They’re my wake-up call when I’m feeling lonely, my outlet when I need to vent and my support when I have a question. And boy, do I have a lot of questions. While my daughter is 4 1/2 years old, her Down syndrome is still somewhat of a mystery to me.

I guess you could say the road ahead of me is a bit uncertain and unfamiliar. But, I do know that road is a lot less bumpy thanks to the mothers who’ve gone before me.

I’m talking about the moms who didn’t have any of the things I have, other than a child with Down syndrome who they loved dearly.

I’m talking about the moms who were likely told their babies would be better off dead or at the very least, be institutionalized.

I’m talking about the moms who raised their children before the age of social media. The ones who didn’t have chat rooms to turn to when they had a question.

I’m talking about the moms who wrote books on how to teach my daughter to read or how to toilet train, because that extra chromosome presents an extra challenge.

I’m talking about the moms who fought for their kid’s education, raised their voices and demanded change in our schools.

I’m talking about the moms who felt lonely, just like me, but most likely didn’t know where to turn.

I can’t imagine how that must have felt. But, I can imagine that as hard as it was, those moms wouldn’t have traded their son or daughter for anything.


Our children are worth it.

The milestones, the smiles, the hugs, the laughter… it’s what fuels us. It’s what keeps us going down the road.


Only, my road is paved, thanks to the mothers who went before me.

There are also signs directing me where to turn, when to slow down and when to stop and enjoy the view.

Where would I be without those signs? Where would I be without those mothers?

Social media has connected me to some of those great women. Oh, how I adore following their journeys. Love pours out of their pictures and words. I take that as encouragement that the road ahead will definitely be filled with many amazing moments.

If only those moms knew how much I look up to them and how much I appreciate their hard work.

While I’m sure I’ll still have my lonely moments, like today, in my heart I know I’m not alone. Facebook is a good reminder, but the better evidence is before me.

It’s the road I’m traveling, paved by the love, tears and the hard work of many mothers.

It’s a road I’m grateful to be on.

A version of this post first appeared on The Mighty Willow.

Originally published: May 3, 2018
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