The Ordinary Goodness of a Life with Down Syndrome, Even Now

A family walk this week

Our daughter Penny is 14. She loves Taylor Swift and Fuller House and the Yankees. She betrays many signs of becoming a typical teenager: she groans when I wake her up at 8 am, rolls her eyes when I suggest she do her homework before checking her phone, begs me for more access to social media, and offers blank stares accompanying a dismissive, “Mom!” when I push her to go into detail about her feelings. 

Ordinary Life

She’s in 8th grade, and right now that means she sits down in front of her school-provided Chromebook every morning and spends the next five hours on and off of Zoom calls and Google meets, with frequent breaks for snacks from the nearby kitchen. 

Our daughter Penny also has Down syndrome. 

Good News, Even Now

A lot of work remains to ensure that the most vulnerable people are welcomed and supported in the manner they deserve. Still, even in the midst of this pandemic that has unearthed prejudice and injustice, there is good news. The state of Alabama, for instance, planned to deny people with disabilities access to ventilators if they came in short supply, but those guidelines changed once it became apparent that they broke the law and discriminated against people with disabilities. Despite the major obstacles to teaching kids with disabilities remotely, this pandemic has also shone a spotlight on the relatively recent reality that we live in a nation where kids with intellectual disabilities are guaranteed access to education.

Generations of parents before me advocated and spoke up and believed in their kids. We stand on the backs of these parents and kids who have refused to be sidelined, refused to be invisible, who have insisted upon the tremendous value every human being brings to their community, to all of us.

Bearing Witness to Ordinary Goodness

Yesterday, Penny baked her first chocolate lava cake, from a recipe one of her school therapists sent her way.

Penny’s chocolate lava cake

Today, she shared with me her excitement that she gets to write an essay about middle school in anticipation of her eighth-grade graduation. 

I tell these stories of the ordinary goodness in our daughter’s life in order to bear witness. She shows me what is true not just about kids with intellectual disabilities but about myself and about everyone else I encounter. She shows me the possibilities inherent in every fragile, unpredictable, messy, beautiful human life. 

This pandemic exposes the ugliness of underfunded school districts and overcrowded nursing homes. It exposes the pain of people who are isolated and vulnerable. It also magnifies the work that has been done to open doors for people like our daughter. And it magnifies the truth of what can happen when a system of people decides to honor the humanity in their midst.

…….

Want to read more? Here are some suggestions:

When I Slammed the Refrigerator Door
Podcast: Reading Small Talk with Amy Julia Becker
What Having a Baby with Down Syndrome Taught Me About Distraction, Fear, and Love

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