My Wonderland

Not all diagnoses are created equal. Some, like cerebral palsy, come with a wide spectrum of possibilities. It’s called an “umbrella diagnosis” a catch-all that stretches over children who will live long, full lives, and others whose journey is far more complex. For many of us, it means a lifetime of therapy, advocacy, and adapting to a world that was never built with our children in mind. But some families receive a diagnosis that doesn’t come with hope for the future. It comes with a timeline. My son Kaedyn lives with cerebral palsy. His life is layered with challenges, appointments, and uncertainty, but he is not terminal. We still get to plan for years ahead. His best friend doesn’t have that same future. He lives with ataxia telangiectasia, or A-T a devastating, degenerative illness that strips the body of function over time. It weakens coordination. Slows speech. Steals mobility. Compromises immunity. And eventually, it takes away the most basic abilities: eating, breathing, even...

I want to talk about something that happens more than it should. It’s not always cruel. In fact, it’s often well-meaning, just curious kids (and sometimes adults) trying to make sense of the world. But for children with disabilities, these moments stick. They sting. And they shape how safe they feel in their own community. If your child has ever walked up to another and asked, “What’s wrong with your legs?” “Why do you wear those things on your feet?” “Why does your iPad talk for you?” or worse “Ew, what’s that?” “Why do you walk like that, it looks weird.” “That’s gross.” This post is for you. And if your response was to laugh nervously, or say, “They didn’t mean it like that,” or “They’re just a kid,” this is especially for you. Because when you defend the comment instead of addressing it, you aren’t protecting your child, you’re reinforcing the idea that cruelty is allowed as long as it comes from a small mouth. And if you’ve ever reached out to gently pat their head with a soft “aw...