What really needs to be shared during Down Syndrome Awareness Month

I met her at the grocery store in the paper towel aisle.

She was a typical-looking teenager with long brown hair and square glasses, loose blue jeans and a hip t-shirt — except, many would say she wasn’t that “typical.”

When I saw her, I caught her contagious smile.

It was one of those moments where life flashes before your eyes — though for me it wasn’t backwards, but forward. For there before me next to a package of Bounty was a beautiful girl named Becky. Her eyes were shaped and chromosomes were numbered like my own beautiful 4-year-old. Her joyful banter with a friend had me captivated.

I approached her mom, Donna, in the next aisle over by the laundry detergent with an eager introduction about how I, too, have a daughter with Down syndrome — not really sure what I wanted from the conversation except for connection. She obliged with a kind smile and some warm words and that was that.

Until — three weeks later — while mingling outside after church, I saw the same brown hair and square glasses coming out of the building. Becky! I thought. I ran up to re-introduce myself to her family with my husband and children at my side.

With more time to spare on the Sabbath, we sat together in the courtyard next to an over-sized pot of pansies and talked for over an hour. Becky babysat Kate and the other little ones, herding the 3-year-old away from the fountain, as Donna shared their story.

I learned how Becky is on the swim team for the Special Olympics, how she’s thriving in high school, how she’s reading at grade level. I heard about her hobbies, how they’re training for a 5K together, and how she loves raspberries. Becky — taking a break from wrangling my children — told me about a surgery she had when she was younger, about her best friend, about how she loves to dance. Their everyday stories encouraged me as I sat with a family a step ahead of us.

On the drive home, I realized that what Donna gave me that summer evening was not just great conversation and encouragement — but also, awareness.

I am aware of a lot about having a 4-year-old with Down syndrome as I live it day to day, but spending time with a woman a decade ahead of me opened my heart to the great gifts and possible challenges to come. As any mother of a teenager does when talking to a mom in the tiny-people trenches, she shared her own I miss that and You just wait. 

I was able to look at life through her eyes for a bit, which in turn, changed the way I view my life now. That is the gift of awareness.

It is the same awareness I craved when Kate was born as I searched the web from my hospital bed looking for anyone who could give me hope about having a child with Down syndrome.

It was the same awareness that sat like a warm balm in my postpartum soul when I stumbled upon stories of families who lived joyful, incredible lives not in spite of their child with Down syndrome — but because of them.

It is the same awareness that continues to blow me away whenever I meet teenagers and adults with Down syndrome who are challenging stereotypes, changing minds, and overcoming boundaries unfairly placed.

October is Down Syndrome Awareness Month. A month not just for people who have or know someone with Down syndrome — or for people who don’t — but for all of us. It is a month to do as Donna and many others have done and continue to do for me: to simply share a story.

For a story does what statistics don’t.

It takes facts off of a page and puts them into a family. It takes a diagnosis and puts it into context with real life. It assuages fear by inspiring confidence that we are not alone. As the most commonly diagnosed genetic condition, most people are aware of what Down syndrome is — but not what it means.

As for me, I am still learning what it means fully and I hopefully will keep learning for the rest of my life. Our story is but a half-decade; the story of a young family who was surprised by pure grace (which, ironically, is the meaning of Kate’s full name, Katherine Grace) in the most unexpected of ways. And we still continue to be surprised by the joyful journey that Down syndrome has given us. But Down syndrome is just part of it. A not-so-big part, really. Kate is just one part of this family and Down syndrome is just one part of what makes her who she is.

And maybe that’s the key to Down Syndrome Awareness Month — that a medical diagnosis is just one part of it.

The rest is found in the stories of real, human lives — the interesting, unique, beautiful individuals who have Down syndrome and the families and friends who love them. In hearing those stories, awareness is gained. In building relationships with those families, hearts are opened. And in sharing those stories — time and time again — the world is changed.

What really needs to be shared during Down Syndrome Awareness Month

7 Comments

  1. Melanie C

    I have been reading your blog for almost a year and I love how uplifting it is! I enjoy reading your thoughts on motherhood and family. Being a mother is truly a great blessing.

  2. This has to be the best post I have read this year. Thanks for the kind words of encouragement and a reminder of the simplicity of what this month is really about. Love and connections.

  3. Having a Down Syndrome child is a blessing nor curse … and one of the greatest learnings you get as a parent.

    My daughter is now 31 years young, healthy and slim …. and our journey was just great.
    She dances like an angel, speaks 2 languages … and she loves people, especially when they are together.

  4. kate

    This is beautifully written! I have A 8 month old baby with down syndrome. His name is Lucas Levi Taylor Tanner. He is amazing!!! He had a rough start i would love to become fb friends and connect with you! HIS STORY IS AMAZING AND IF I COULD REMOVE THAT EXTRA CHROMOSOME I DON’T THINK I WOULD

  5. Ashlee

    So well said! I have been wanting to share and bring awareness all month, but have struggled with how to go about doing it that is authentic to our family. You really got to the heart of what I hoped, but did not know how to express! May I share?

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