More Than One Thing: Parenting Disability Without Losing Myself
When people find out I’m the parent of a child with a disability, the response is often the same. A sympathetic head tilt and a well-meaning “I don’t know how you do it.” Or, “You’re a superhero.”
And listen, I get it. The caregiving world is intense. It’s emotionally demanding, physically exhausting, and sometimes deeply isolating. But here's the truth: My child’s disability doesn’t give me an excuse to stop showing up for my own life. It doesn’t make me a martyr. And it doesn’t define all of who I am.
Yes, I’m a caregiver. That’s a huge part of my reality. I manage appointments, advocate fiercely, and rearrange our lives more times than I can count to make things accessible, equitable, and possible for my child. But I’m also a wife, a daughter, a sister, and a badass at work. I’m creative. I love helping others. I’m a great friend. I’m an runner. I’m still just a mom, who sometimes yells at kids to put their shoes on faster or forgets it’s neon shirt day at school. I laugh hard. I get mad. I’m hard on myself. I stay up too late scrolling. I care deeply about the world outside of disability, too.
There was a time when it felt like I had to choose, either be the ever-present caregiver or be everything else. If I wasn’t advocating 100 percent of the time or “spreading awareness”, I was failing at being a “medical mom”. But I’ve learned that making my child’s diagnosis my whole identity doesn't serve either of us. My child deserves a mom who is whole. And I deserve to be whole, too.
I don’t get to opt out of being a friend just because our life is complicated. I don’t get to ghost my body because caregiving is hard. I don’t get to feel sorry for myself forever because our path looks different. I can grieve and still keep going. I can advocate and still have joy. I can carry heavy things and still be happy.
I’m not doing anything heroic. I’m just living a full life. Not in spite of my child’s disability, but alongside it.
So if you’re in this world too, here’s your reminder: You’re allowed to be more than one thing. You don’t have to disappear into your role as a caregiver. You don’t have to prove how hard it is to earn respect. You’re already worthy. And your life can still be vibrant, messy, fun, and deeply, unapologetically yours.