It was a night marked by glitz and glam—a real rarity for us parents of three children under the age of five. A remarkably kind couple invited my husband and me to sit at their table at a Gala for a local Down syndrome association. We found a few old items in our closets, put together a 20’s look to fit the theme, and splurged on an Uber.
We drank old fashions, we laughed and traded stories about our children with Down syndrome. Then the music started and a pair of sisters performed a choreographed dance. The older sister was elegant and marked by grace, the younger sister, the one with the extra chromosome, had a smile that stretched from ear to ear and was full of life with every plie’.
I started crying. I think most people in the room were choked up. A woman sitting next to me, with tears in her eyes and a smile on her face, said, “How do you explain this to someone who doesn’t know?”
You see, those stories we exchanged minutes before the dance, many of them were about the hardships our children face because of their extra chromosome: two with severe GI issues, two with complex communication issues; our open-heart surgery story was nearly minor.
But then, this little girl danced, and the beauty that mesmerized the audience outshined any New York performance I’ve ever seen.
Down syndrome has this way of intricately intertwining beauty and suffering.
Parenting a child with Down syndrome can be challenging and at times painful. But the suffering that comes with the extra copy of the 21st chromosome also holds extra joy in its delicate spindles. The hardships somehow make life sing a richer melody.
As a parent of a child with Down syndrome, I have witnessed the pain that can come with this disability. I’ve grieved the leukemia diagnoses of friends’ children, I’ve felt helpless as another child has a round of hospital stays, and on our own journey, I have felt the uncertainty that plagues my parent heart when a friend’s younger, typically developing child, starts outpacing my own.
But, Down syndrome has given me a better way in which I experience the world.
It’s because of our kid’s extra chromosomes, that all of us sat around the table that night having an instant connection. Our stories were both heavy and light. They are ones filled with real suffering and real laughter. They are tales that tell of both hardships and newfound purposes.
Our kids are not here to teach us something. They have their own dreams and missions to fulfill. It’s through their journeys, we learn; it’s through their journeys our own stories start to evolve.
Like any good novel, the hardships lead to good character development. Through their challenges, we learn their resilience. Through their hardships, we learn empathy. Parenting a child with Down syndrome we learn how to better embrace the moments, how to love others well and live more fully.
So, we watch them fill the pages of their lives, while the pages in our own start to change. The chapters at times are difficult, others are just joyful, and the stories altogether more beautiful.
Read about my son with Down syndrome’s first day of school or a letter to him on his third birthday.
*Parenting a child with Down syndrome
