ONCE UPON A GENE- EPISODE #280: Comparing Our Kids: Guilt, Milestones, and Connection in Rare Disease Parenting

Have you ever celebrated another child’s milestone while quietly wondering why your own child hasn’t reached it? Or caught yourself thinking, “Their kid can walk, talk, and eat - why do they think this is so hard?”

We don’t love admitting it. But maybe we could talk about it.

In this Effisode, I’m brainstorming about comparison in parenting our kids with disabilities, including my own moments of seeing other children with CTNNB1 syndrome reach milestones and wondering whether I missed something with Ford. I know how much I’ve poured into supporting him. And yet, sometimes that little voice still asks, “Did I do enough?”

I explore how comparison slips into guilt and shame, why it can hit harder when we’re tired or overwhelmed, and how it creates silence within the very communities we turn to for connection. Some families hesitate to share their hardest days. Others hold back their good news.