On Saturday night, Peter and I went with Penny to the Down Syndrome Association of Connecticut’s World Down Syndrome Gala. We were jet-lagged, and I didn’t want to get dressed up for a formal occasion. Plus, we are new to this organization, so we don’t know that many people. In other words, I didn’t want to go. But if there is anything I’ve learned in the past twenty years of being connected to the Down syndrome community, it’s that it is worth it to show up.
When we arrived, the evening’s emcee invited Penny to participate in a “fashion show” later that night. She readily agreed. And then, when her moment in the spotlight came, she started forward. I’m not sure whether her friend Grace was next in line, or whether Grace wasn’t planning to participate, or whether the emcee had overlooked Grace. For whatever reason, Penny turned back and took Grace’s hand, and they walked the red carpet together, with a twirl and a hug and lots of flare.
Showing up at the Gala was worth it, not because I did my duty, and not because I had something great to offer. It was worth it because I got to be in the presence of truth and beauty and delight. Over and over again, moments like Grace and Penny hand in hand ground me in what is real and good in this world.
I watched all the other families—the ones like us, parents of emerging adults, and the ones with infants, toddlers, and little kids with Down syndrome. There was joy and gratitude and celebration. It took me back to a different party from a few weeks ago, a cocktail party where I got to talking about the workshop I get to do with families experiencing disability. I explained the three main ideas: start with delight (not deficit), connect to community, and take the next step toward a good future.
“Start with delight,” one of them said. “That must be really hard. I mean, is that, like, a daily thing you have to remind yourself of?”
His words caught me way off guard. I forget that many people look in at our family life and see hardship and struggle. I forget that the assumptions in our wider culture are that disability is the same as sadness. I forget that my peers might think our family life is marked by regret and wondering what might have been. I forget the way my imagination has been formed and shaped by a new way of understanding identity. (For more on how to understand identity as something we receive from belovedness rather than achieve through ability, I have a free illustrated resource for you!)
I told them delighting in Penny doesn’t take daily reminding. And that same mindset shift helps me to see all three of our kids for who they are and to take delight in them. In the same way that thinking of our kids in terms of what’s “wrong” with them would shape me, thinking of them in terms of what I love about them, what brings them joy, how they bring joy to others, what they love—all of those things shape the story of our life as a family. It’s not hard on a daily basis to start with delight. At least, not anymore.
We’re heading into a week of going back to school after spring break, learning about college acceptances for William, and returning to the to-do list and email inbox. And as we do, I’m grateful for the reminder that there is a way of being in this world that starts with love, that extends a hand to a friend in order to share the spotlight, that celebrates who we are as the beloved ones rather than what we do to prove ourselves.
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