Ava’s Day to Be Seen

by Rachel Phillips

This year’s Moebius Syndrome Awareness Day felt especially meaningful for our family, as it marked Ava’s final MSAD at her elementary school—and her school showed up in the best way.

From a limo lunch to a scavenger hunt designed to help her classmates learn more about Moebius syndrome, the day was incredibly thoughtful and full of intention. Ava decided that this year she would design her own “merch” with printed stickers shirts. And because life (and weather) happens, we’re continuing the celebration with a Purple Party on February 7—proof that MSAD doesn’t have to fit neatly into a single day.

One of the most powerful moments came during an open Q&A with Ava’s class. In the past, Ava usually asked me to answer questions for her. This year, she made a different choice. She decided she could answer them herself. Watching her speak with confidence and courage is a moment that shows me she’s ready to be an advocate for herself and her community.

MSAD didn’t change how I feel about our connection to our community—but it reinforced something I already believe deeply: if you build it, they will come. We’ve always been open about what Ava needs, and she’s grown up knowing she has people firmly in her corner. That matters.

There was also an important teaching moment during the day. At the limo lunch, a leader from an organization that supports young adults with disabilities noticed Ava and generously paid for her meal. In doing so, they assumed Ava had a cognitive disability. You could hear this assumption in his voice and Ava being Ava knew to accept his gift with gracious gratitude. This created a valuable opportunity to explain that Moebius syndrome exists on a spectrum, and that curiosity is always better than assumption.

Days like Moebius Syndrome Awareness Day matter to me because they give my daughter space to feel fully seen. Teaching her how to advocate for herself—and for her community—is a privilege, and one I believe will serve her for a lifetime. Representation matters. Everywhere. Creating that space now means she learns early that her voice matters, her presence matters, and that she belongs exactly as she is.

My hope is that Ava grows up knowing she never has to shrink herself to make others comfortable—because the world is better when she takes up space exactly as she is.

If I could offer one piece of advice to someone experiencing Moebius Syndrome Awareness Day for the first time, especially as a parent, it would be this: lean in. Be present. Ask questions. Let your community support you. Moments of pity may happen—but let them fuel moments of strength, connection, and empowerment instead. Your child will follow your lead.