Raising a child who has never known life without Pompe disease
People call Caroline brave, but infusions and appointments are her 'normal'
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When people meet my daughter Caroline, they often call her brave. They see a little girl enduring enzyme replacement therapy every other week, the port in her chest, long infusion days, doctor’s appointments, blood draws, and tests. She smiles through experiences that would make most adults cringe, and people praise her courage.
I appreciate it when people notice what Caroline has been through, and their words are always kind. But I wonder what “brave” means for a child who has never known anything else.
Caroline doesn’t remember life before Pompe disease because there wasn’t one. Diagnosed through newborn screening, she began treatment before her first birthday. What seems extraordinary to others has always been ordinary to her.
For Caroline, infusion days aren’t an interruption; they’re simply part of childhood.
Her version of ‘normal’
As her mom, I think about all the ways Pompe has changed our family. I remember the fear of her diagnosis, the impossible choices, saying yes to the port, and grieving the childhood I imagined for her. Those memories are mine — not Caroline’s.
She doesn’t compare her life to one without infusions or remember a time before medication schedules. She never had a “normal” childhood interrupted by a rare disease. This is simply the childhood she knows.
Sometimes I feel sad when she misses a day at the pool for an infusion, leaves school early for appointments, or knows words like “enzyme” and “port” before most kids do.
But then I look at Caroline, and she isn’t sad about a life she never had. She’s busy choosing a movie for her infusion, picking snacks, and deciding whether to bring markers or crafts. She’s just living her life, and realizing that has changed how I think about resilience.
People say, “I could never do what you do,” but Caroline doesn’t wake up and decide to be courageous — she’s just being herself.
Caroline never got to choose Pompe disease, but she does get to choose how she spends her infusion days. She laughs with her nurse, colors pictures, tells stories, asks for another blanket if she’s cold, and requests another ice pop when she’s feeling good. She isn’t trying to inspire anyone. She’s just living the only life she knows.
Maybe that’s what amazes me most about children. As adults, we spend so much time comparing our lives with what could have been. We replay old decisions, imagine different outcomes, and grieve the lives we didn’t get. Children rarely do that. They accept today for what it is. Their reality just is.
Watching Caroline has reminded me that we are all born into different versions of “normal.” Some children grow up navigating a rare disease. Some grow up moving from house to house. Some learn to live with food allergies, hearing aids, diabetes, divorced parents, anxiety, or countless other circumstances that shape their childhoods in ways no one else can fully understand.
As adults, our realities are just as varied. We carry different joys, losses, responsibilities, and challenges that are often invisible to the people around us.
What feels normal to us might not be normal to someone else, and that’s OK. I think that’s why I hear the word “brave” a little differently now. Yes, Caroline is brave. But not just because she sits through infusions. She’s brave because she’s growing up, trying new things, making friends, facing disappointments, learning from mistakes, and figuring out life just like every other child. Those experiences look different for each of us, but they all take courage.
The same goes for the rest of us. Bravery isn’t just for rare diseases. It’s in the parent who keeps showing up after a sleepless night. It’s in the child starting at a new school. It’s in the adult beginning a new job. It’s in the person caring for a loved one. It’s in the teenager trying to fit in. It’s in the family learning to adapt when life changes in ways they never expected.
We are all living our own version of normal. So when people tell Caroline she’s brave, I will keep smiling and thanking them. I know their words come from love, and I hope she always feels seen and encouraged by what they say.
But in my heart, I remember something else. Caroline isn’t measuring her life against the childhood I once pictured for her. She’s too busy living the one she has. Maybe that’s the lesson she’s been teaching me all along.
Bravery doesn’t just belong to people facing extraordinary circumstances. Sometimes, courage looks very ordinary. It looks like waking up, embracing the life in front of you, and becoming exactly who you are meant to be.
For Caroline, Pompe disease isn’t the story that interrupted her childhood. It’s just one chapter in the only childhood she has ever known.
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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