I wonder about the questions my daughter hasn’t asked me yet

One thing I’ve realized as a mom raising a child with Pompe disease is that I never truly know when her condition is on my daughter’s mind.

I always know when it’s on mine — when I’m refilling prescriptions, making appointments, planning infusions, or quietly noticing new symptoms. It’s there before every clinic visit, when I’m checking lab results, and even in the quiet moments that might look like regular parenting to anyone else. Those moments are filled with watching, comparing, and wondering, and I ask myself: Is Caroline keeping up with her friends? Does she seem more tired lately, or am I just overthinking it?

Pompe disease is always in the back of my mind. Some days, it’s a small worry. Other days, it takes over everything. But what about Caroline? What does all of this feel like for her? I wonder about that a lot.

Asking questions

Caroline almost never brings up Pompe disease when we talk about it. But her questions will pop up when I least expect them — sometimes during an infusion or at a doctor’s appointment, often in the car, halfway through a bike ride for ice cream, or right in the middle of something ordinary. Out of the blue, she’ll ask something that reminds me that she’s carrying this diagnosis, too.

Over the years, she has asked: Why do I have Pompe disease? Why am I the only one in our family with it? Will I always have it? The questions stop me in my tracks. It’s not that I don’t know what to say, it’s that I’m always taken aback that she’s thinking about these things at all.

Most days, Caroline is just like any other 7-year-old. She goes swimming, does play dates, rides her bike, engages with friends, and does whatever new thing she’s into that week. From where I’m sitting, Pompe disease doesn’t seem to take up much space in her world.

But then, out of nowhere, a question comes up, and I remember she’s having her own inner conversation, one I can’t fully hear. Does she only think about Pompe during infusions or when someone asks about her port? I know it pops into her mind at random times, but I wish I knew what brings those thoughts to the surface.

I wonder what worries her the most. As parents, we often assume the diagnosis is the heaviest thing our kids carry. But is it really?

The things my daughter thinks about

I take Caroline to therapy so she has a safe space to talk. Sometimes, I wonder how much she even mentions Pompe disease there. Maybe she’s more focused on her friendships, her frustration with her big sister, or fitting in at school. Maybe Pompe isn’t always the biggest thing for her. Honestly, I hope that’s the case. I hope she spends way more time thinking about playground drama than about enzyme replacement therapy. I hope her biggest worry is which ice cream flavor to pick, not her next clinic appointment.

At the same time, I know there are things she keeps inside. Maybe she hasn’t figured out how to ask the questions yet, or she can’t quite find the words. Maybe sometimes she feels scared and isn’t sure why. Maybe she’s noticed things about herself that she’s still trying to make sense of. Maybe there are questions she hasn’t asked because she’s not ready for the answers. Or maybe she just hasn’t found the right words yet.

Her understanding of Pompe disease is always changing. When she was little, it was just something that happened to her. Then it became something she could ask about. Now, she’s starting to process what it all means. As she grows, her questions and worries will change, too. What she asks at 7 won’t be what she’ll wonder about at 10, 15, or 25.

Part of me wishes I could see inside her mind and know exactly how she’s carrying all of this. But I know that’s not possible. Parenting always comes with a bit of mystery. No matter how closely we listen, there will always be thoughts our kids keep to themselves, worries they don’t share, and questions they haven’t asked yet.

All I can do is keep making space for conversation, keep answering her honestly, and keep letting her know no question is too big or too small. When those questions come up — in the car, on a bike ride, or anywhere else — I’ll be there, ready to listen.

Maybe the most important thing isn’t knowing exactly what she’s thinking, but making sure she always knows she doesn’t have to carry those thoughts by herself.

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.