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Why I Tell My Daughter with Down Syndrome to “Keep Being You”
On our recent drive to a birthday party, my seven-year-old daughter stated, “Mommy, this is the same way we go to Pizza Box,” our local pizza place. I smiled when she said this, as my daughter inherited my love of maps and keen sense of direction, and often spends our time in the car talking about the “new way” we are traveling and pointing out familiar and well-loved places: her school, local library, coffee shop, the YMCA.
In my previous essays, I shared the joys of raising Hazel, who has Down syndrome. Hazel’s strengths and talents are undeniable; she is a force for good, with her signature smile, big heart, and genuine love and concern for those around her. She is curious and smart. Like her dad, Hazel loves music, devours books, and enjoys nothing more than being silly. Like me, she loves the outdoors, adores her pets, and is always up for a chat at the end of the day.
Hazel also challenges me—often multiple times a day. She is strong-willed, stubborn, and often believes that her way is not only the right way but is the only way to do something. Her personality often mirrors my own, and because of this, moments can be hard. Really hard.
But at the end of every day, as I see that sweet face asleep in her bed, I am in awe of my little girl.
Here’s why.
While Hazel’s personality, strengths, and favorite activities are similar to her dad and me, Hazel faces additional challenges and biases that we have never faced —and likely never will. Because when Hazel was born with Down syndrome, she was also born with a heart defect that required surgery at three months old, low muscle tone for which she has had weekly PT since six months old, and the reality that many skills would just take longer and be harder for her to acquire—from speaking and walking to playing sports to reading and writing to being accepted for who she is.
And for the last seven years, she has grown and strengthened her mended heart, developed the muscle strength to run, jump, hop, and climb, and spent each and every day working hard on her motor, speech, and social skills—in therapy sessions, in the classroom, and on the playground.
When Hazel was a baby, then a toddler, then a preschooler, I was often by her side, cheering her on. Now a first grader, Hazel spends her days at school. I say goodbye to her each morning as she gets on the bus, and I remind her to listen to her teachers, be kind to her friends, and have fun. And when she gets off the bus at the end of her day, looking tired and seeming a little quieter than usual, my heart aches just a bit.
Because as Hazel grows up, the reality of having to work longer and harder becomes more real. Hazel tells us that learning is hard. She talks about when a friend makes her sad. She sometimes struggles to find her place in the crowd. As her parents, we try to work through these challenges together. We read books together, play math games, talk about what being a friend means, and remind her that not everyone will end up being a friend. And that is okay.
As we celebrate our seventh World Down Syndrome Day, we will wear our mismatched socks, visit Hazel’s classroom to read a book and talk about Down syndrome, and stand proudly as our daughter shares her About Me poster with her class. From this, I hope others will realize that while Down syndrome is a part of who Hazel is, it does not define her.
My little girl has met many challenges in her young life, and she keeps moving forward—often with a smile and a laugh. She is an inspiration to me and, I believe, to those who have been lucky enough to meet her.
Keep being you, Hazel. The world is a brighter place with you in it.
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