Surprised by Our Teenager With Down Syndrome

scrapbook graphic with three pictures of Penny with friend at the MoMA
Penny with a friend at the MoMA

In the past few weeks, I’ve been surprised by Penny, our 15-year-old daughter who has Down syndrome. 

I was surprised when she recited the Gettysburg Address in preparation for doing the same in her social studies class. 

I was surprised when she was asked to be a bridesmaid in her former babysitter’s wedding. 

I was surprised when she walked into a room in the Museum of Modern Art in New York City, pointed at the Jackson Pollock hanging in front of her, and noted, “I think he was feeling angry.” 

I was surprised when she reconnected with an old friend she hadn’t seen in two years. I thought I would need to prompt conversation and cajole sentences. Instead, they giggled and jabbered and compared notes on fashion and pranking their parents and TikTok routines.

I was surprised when she performed her jazz and ballet recital pieces in the living room with poise and confidence and grace. 

Fifteen years into her life, I am still receiving the gift of this child of ours. 

I had a chance this week to talk with Bonnie O’Neil about the early days of our parenting journey with Penny—the sense of guilt and grief, the differences in how Peter and I experienced her diagnosis, the early glimmers of hope. 

Back then, as now, Penny surprised me. 

But the surprise of the beauty of who she is used to interrupt my fears. 

Now it simply extends my sense of gratitude and wonder. 

And yes, some of that movement from fear to gratitude is simply a matter of time, of getting to know her, of getting through doctor’s visits and therapies, of realizing how kind and supportive our communities can be. 

But some of that movement was in my heart. Penny has offered to me a greater ability to receive the wondrous surprise of every human being, given to one another in brokenness and in beauty. 

Each of us is a gift. For me, that was the greatest surprise of all.

scrapbook graphic with pictures of Penny hugging bouquet of flowers, Penny and a friend giving each other a hug, and computer screen showing an online interview between Amy Julia and Bonnie O'Neil


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Hi, I’m Amy Julia.

I write about faith, family, disability, and privilege.

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