The joy of unexpected connections with other families who ‘get it’
Sometimes the most meaningful encounters happen when you least expect them
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Our family spent last week in Florida for spring break. We skipped the theme parks and wild adventures this time, choosing instead to stay at a hotel by the beach. The kids loved bouncing between the pool and the ocean, and we all got a chance to slow down and just be together. After a week of sunshine and salty air, I sense how much we all needed that break.
Because it was spring break, every place we went was crowded with families and kids. In our everyday life, I don’t really notice how different my girls are. We’re so used to our routines and our own little world that their differences just feel like part of the background. But being around so many other families made me realize again that what feels normal to us can really stand out when we’re in a crowd.
Whenever we walk into a new place full of kids, my girls just want to jump in and have fun like everyone else. For a little while, they get to forget about being different. But then the stares start, or we overhear a whisper, or a child asks their parent a question. Suddenly, it’s obvious again that they don’t quite blend in. Caroline’s port, required to treat her Pompe disease, is visible in her bathing suit. Evelyn’s hair loss, due to alopecia universalis, is hard to miss. In these moments, I can see them become more aware of how they look, and I know it weighs on them.
We’ve spent so much time as a family talking about how to handle these moments — how to answer questions, how to deal with the stares, how to keep moving forward. There are days when the sadness and loneliness hit hard, and sometimes the tears come. As a mom, it’s not always easy to find the right words or new ways to help them see themselves with kindness. But I am so proud of how my girls carry themselves.
Caroline, 7, never tries to hide her port. It sits right above her collarbone, with a purple-blue scar in the center from years of use. She just puts on her sunscreen and jumps right in. Evelyn, 9, refuses to wear wigs because they’re uncomfortable, and she’d rather be free to swim and play. Hats and sunglasses never last long in the water anyway. I love seeing them embrace who they are, even when it’s hard.
Beautiful butterflies
While we were on this trip, the girls saw another family with a daughter who looked about their age. Her parents were transferring her from her wheelchair to a pool lounge chair. The first thing they both commented on were the beautiful butterflies on her wheels. They excitedly asked if they could go tell her they liked her wheelchair. We walked by, complimented her chair, and walked back to the pool.
Later that afternoon, we ran into the family while swimming in the pool. Evie and Caroline started playing with the girl, and my husband and I started small talk with her parents. Quickly, a burst of energy took over, and I said, “Do you mind if I ask about your daughter’s condition?”
That simple question opened the door to a conversation that felt so familiar and comforting. Every story they shared, we could nod along and say, “Yes, we get it.” Our journeys aren’t exactly the same, but the emotions and the daily realities are so similar. It was a relief to talk with someone who truly understands.
Standing there in the pool, swapping stories and sharing the hard parts, I felt both humbled and inspired. Sometimes the most meaningful connections happen when you least expect them. Their faces were relaxed, warm, and inviting. We could have talked for hours.
We kept running into each other for the rest of our trip. Every time, it felt so natural and comfortable, like we’d known each other much longer than just a few days.
Moments like these remind me that we’re not alone — not only in our Pompe community, but also in the bigger rare disease family. Have you ever been out somewhere and spotted another family that just gets it? You exchange a look, and there’s this silent understanding. I see you. I feel you. We’re in this together. None of us is alone.
Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.
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