Finding Your Community: A Lifeline

contributed by Sheri Mills, mom to Lyra (7, living with PWS)

During that first year after Lyra’s diagnosis, the idea of community felt impossible. I had one connection—a mentor mom PWSA paired me with—one steady, compassionate voice on the other end of the phone. I loved her then and I love her now, but at the time, that was all I could hold. My world revolved around trying to stabilize our new normal: bouncing from appointment to appointment, fielding medical phone calls, and caring for a newborn while trying to reassemble the future I thought I knew.

Looking back, I’m amazed at how much strength we carried without realizing it. We didn’t have a roadmap; we only had sheer determination to make it through each day. My mentor mom answered the late-night questions and softened the fear of the unknown, but still—outside of that single connection—there was a loneliness I didn’t yet have words for.

When the fog of that first year lifted, something else settled in: the quiet. The isolation. Even with support, I felt separated from the world around me, craving connection with people who lived this day-to-day reality. I wasn’t ready for friendship at the beginning—it takes time to grieve, to adjust, to breathe—but once I was ready, I realized how deeply I needed it.

And that’s what I want every parent reading this to know: you deserve community. You deserve the kind of friendships that steady you. But like everything in our world, they don’t appear on their own. They have to be built—intentionally, gently, in the small spaces where real life unfolds.

None of us have long stretches of free time. But we do have pockets—washing dishes, folding laundry, sitting in traffic on the way to yet another appointment. Those tiny moments are enough. They can become bridges to people who understand us in ways no one else can.

Two years ago, one mom in our circle had an idea: What if we started a Marco Polo group?
For anyone unfamiliar, Marco Polo lets you send video messages—real faces, real voices, without needing to be available at the same time.

At first, the group was huge. Dozens of moms, all eager to connect, all carrying their own stories. But it quickly became too much—too many messages to keep up with, too many voices talking at once. The overwhelm quieted the very connection we were trying to foster.

So a few of the active moms branched off into a smaller group—something more manageable, more personal. And that’s when the real magic happened. In that small space, through short video messages tucked between the demands of everyday life, true friendship took root. Not just support—friendship. A real, lived-in community.

Because that group has been such a lifeline, we wanted to expand the idea: small, intentional groups for moms who are ready to build community after that first mentorship year. PWSA can help families find each other and assemble these small groups, just like they help connect families with mentor moms. They won’t oversee or manage the groups, but they can help get them started.

And the best part?
Location doesn’t matter.