Peter holds a baby Penny and points at the camera while Penny raises her arm in the air. They are standing in front of the ocean.

Down Syndrome’s “Exclusive Club”

I remember a day 17 years ago when Peter and I had spent hours with Penny at the Children’s Hospital of Philadelphia. We were exhausted. But he needed to attend an event on the school campus where he worked. Peter coached the speaker’s granddaughter in squash, and the speaker had asked to speak with Peter privately after his talk. 

The speaker was Lowell Weicker, former Governor and Senator of Connecticut, and Peter was excited to meet someone with those titles. But then Sen. Weicker told Peter about his son, Sonny, who had Down syndrome. Or rather, he gushed about his son Sonny, who was our age and working at a law firm and taking a hip-hop class and bringing joy to the people around him.

Peter came home that night and he was no longer exhausted. Instead, he said, “We’ve been invited to join an incredibly exclusive club that I had no idea I wanted to join.” He didn’t mean that we had been invited to a club with powerful politicians, but rather that we had been invited to a club of vulnerable parents.

A few weeks ago, I received a phone call from a mother of a four-year-old with Down syndrome who would be moving within an hour or so of where we live. I don’t know that school system, but I was able to connect her by email to a few other parents of kids with Down syndrome in the area. Soon, the information was pouring in with people offering help and support and local connections, which reminded me of our introduction to the “club” 17 years ago.

I participate in this club every Friday, when my friend Ginny and I meet up to work through a course teaching us how to navigate our daughters’ transition from high school. I remember the privileges of my membership again every time I reach out to women with a prenatal diagnosis. 

The thing that’s also amazing about this “exclusive club” is how non-exclusive it actually is. The only condition for membership is having Down syndrome or loving someone with Down syndrome. Everyone is welcome here. Everyone belongs.

More with Amy Julia:

If you haven’t already, you can subscribe to receive regular updates and news. You can also follow me on Facebook,  Instagram, Twitter,  Pinterest, YouTube, and Goodreads, and you can subscribe to my Love Is Stronger Than Fear podcast on your favorite podcast platform. 

Share this post

Leave a Reply