Last weekend I mentioned to our kids that March 21 was World Down Syndrome Day. I reminded them that a few years ago, Marilee thought we should celebrate this day by saying yes to everything Penny wanted. 

This time, Marilee said, with a bit of a smile, “When is the day we celebrate me and say yes to everything I want?” 

William turned on the big-brother cynicism: “Are you saying we should have a World White Girl Day for you and a World White Boy Day for me?” 

His point, other than mildly mocking his sister, was that the lives of kids like him are already celebrated every day. He doesn’t work hard to get peers or adults to respect him, but he has witnessed adults talk about Penny as if she weren’t present. He doesn’t struggle to find clothes that fit his body, but he knows that Penny’s petite frame makes it harder. He gets invited to participate in school activities and friend groups, and he knows those social interactions are fewer and farther between for Pen. He doesn’t encounter essays that suggest his life might not be worth living, but he has read the comments on some of my writings that question the value of lives like his sister’s.

Marilee has a point too. That each and every human life is worthy of tremendous celebration. That she needs to know how important and meaningful her life is to those of us around her. 

And that families celebrating the one child with Down syndrome need to be aware of the way that can feel for the other siblings. 

And so yes, on World Down Syndrome Day we celebrate Penny. We celebrate the lives of people with Down syndrome around the globe. But we also celebrate the families and siblings they love. And we are grateful for the way they remind us all of the inherent and inestimable value of each and every human life. 

What gifts we are given simply in encountering one another.

More with Amy Julia:

• Skiing, Disability, and Love
• When One Child Needs More Attention
• World Down Syndrome Day 2023

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