What a child with Pompe disease taught me about being a parent
Every parent lies awake at night, wondering if they're doing enough
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People often tell me they can’t imagine what it’s like to parent a child with a rare disease. I know they mean well. Sometimes they say I’m stronger than they could ever be, or call me a superhero, or wonder how I manage it all.
I understand what they’re trying to say, but I think they’re missing something. Parenting a child with Pompe disease is hard, and yes, our lives include things most families never have to think about. But I don’t believe we’re a different kind of parent. Deep down, I think we have much more in common than people realize.
Whether your child has a rare disease, struggles with anxiety, gets cut from the basketball team, is navigating middle school friendships, or is perfectly healthy, every parent wakes up wanting the same thing. We want our children to be happy. We want them to feel loved. We want them to grow into kind, capable adults. And perhaps more than anything else, we want them to be kids.
Raising a good human
When my 7-year-old daughter, Caroline, was diagnosed with Pompe disease, I didn’t suddenly become a different kind of mom. There was no secret well of courage, and no handbook arrived to tell me how to care for a child with complex medical needs.
I was still the same mom I had always hoped to be, just with a few more adjustments than I expected. But really, aren’t we all adjusting as we go? I still pack lunches, remind Caroline to brush her teeth, cheer at school performances, worry when she’s sick, and celebrate birthdays.
The difference is that in our house, between soccer practices and homework, there are infusion days, specialist appointments, and conversations about things most kids never have to think about. But if you look past those details, what remains is familiar. Every parent is trying to raise a good human. Every parent makes decisions without knowing if they’re right. Every parent lies awake at night, wondering if they’re doing enough.
There is no manual that promises our children will avoid heartbreak, disappointment, illness, or pain. We just keep showing up. Maybe that’s why I’ve always felt a little uncomfortable with the word “superhero.” Superheroes choose to save the world. Parents choose to love their children. It’s not the same thing.
When my husband and I decided to have children, we didn’t get to choose what kind of children we’d have. We weren’t picking personalities, talents, or diagnoses. We weren’t promised healthy children, just like no one is promised athletic or easygoing children. Our children arrive as they are, and we spend our lives learning how to love the unique people they’ve become.
Some parents learn about food allergies. Others learn about autism, ADHD, diabetes, or depression. Some become experts in college applications, while others learn about physical therapy or rare diseases. None of us saw our parenting journey coming. We adapt because that’s what love asks of us.
Sometimes I wonder if calling parents of medically complex children “superheroes” actually creates more distance than connection. It makes it sound like there are ordinary parents and extraordinary parents. I don’t think that’s true. I think there are just parents. Parents who love fiercely, worry constantly, make mistakes, lose sleep, and celebrate milestones no one else notices. Parents who wonder if they said the right thing, made the right decision, or gave enough of themselves that day.
The details of our lives might look different, but the love underneath is the same. I don’t need people to think I’m stronger than they are. I want them to see themselves in my story, because nothing makes me feel more powerful than being relatable and knowing I’m not alone.
One day, your child will face something you never expected. Maybe it won’t be a rare disease — I truly hope it isn’t — but it will be something. Heartbreak, failure, loss, a diagnosis, or a dream that doesn’t turn out the way you imagined. When that day comes, you won’t become a superhero. You’ll just be a parent. You’ll show up because your child needs you. You’ll learn things you never wanted to learn. You’ll find strength you didn’t know you had — not because you’re extraordinary, but because you love your child.
Parents of children with rare diseases aren’t remarkable because our children are sick. We’re remarkable for the same reason every loving parent is: We wake up each morning and love the child in front of us — not the one we imagined, not the one we hoped for, but the wonderful, complicated, unique child we were given. Then we do our best with the day we’ve been handed. In the end, that’s what parenthood has always been.
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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