World Down Syndrome Day 2023

March 20, 2023

I love World Down Syndrome Day.

It’s a day to simply pause and celebrate the goodness of a world with people with Down syndrome in it.

It’s a day to pause and celebrate the good and ordinary life of people like our daughter Penny.

In the past on World Down Syndrome Day, I’ve gone global. Once I had the honor of finding 21 different people with Down syndrome from around the globe and compiling their photos and brief stories for Parents Magazine. I’ve written for other news outlets like the Washington Post and Good Morning America and Christianity Today.

But this year I want to stay local, with our very particular daughter living her very particular life.

I want to celebrate the times I hear her in her room practicing her cheerleading routine behind closed doors. The way she still slides her hand into mine when we go for a walk. The way she always wants to know the details of my choices when I go out to eat. The routine she still has with me (a song and a prayer) and with her dad (an elaborate handshake and reminder of all the teams they root for) before bed. The ways she is growing up into a responsible, thoughtful, independent young woman.

But it is impossible to celebrate Penny in isolation. One of the beautiful things about having a child with Down syndrome is recognizing how much we all need each other every step of the way. And so if I want to celebrate Penny, I also need to celebrate her teacher who met with me last week and showed me the notes she had taken in anticipation of Penny’s next PPT meeting. I need to celebrate her pediatrician, who gave Penny autonomy to meet with her without me in the room since she is 17 now. I celebrate her dance teachers and cheer coach and pastor. I celebrate her friends. I celebrate her siblings, who make sure she does her fair share of the chores and who appreciate her laughter.

And it is impossible to celebrate Penny only in this moment. Because one of the other beautiful things about having a child with Down syndrome is recognizing the generations of people who have gone before us. Who opened the doors to school buildings and workplaces and closed the doors to institutionalization and sheltered workshops. Who advocated for legislation and financial supports and social supports. Who wrote curriculum and innovated medical procedures.