You’re not failing if you can’t remember every detail about your child

After my daughter Caroline’s Pompe disease diagnosis, our world changed overnight. I was desperate to learn about everything — enzyme replacement therapy, biomarkers, milestones, muscle strength, respiratory function, nutrition, dosages, and lab results. Terms that were once foreign became our daily language.

There were appointments, questions, records, symptoms, and numbers to manage. I felt pressure to know it all for Caroline. If I didn’t keep track, who would?

Early on, I wrote down everything: what Caroline ate, her abilities and struggles, every milestone and number. I wanted to keep up with doctors and do right by her. Everything felt urgent.

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Aug. 7, 2026 Columns by Kate Manger

What a child with Pompe disease taught me about being a parent

Any parent facing a diagnosis knows this feeling — no gentle introduction, just a new reality you must live immediately. Over time, you get better at it, but it never truly gets easy.

You pick up the language and routines, and learn which questions and numbers matter. Slowly, you feel like you’re catching up.

But with a progressive disease like Pompe, you never catch up for long. Just when things start feeling comfortable, something shifts — a new dose, a new test, a new worry. The finish line always moves out of reach.

But every once in a while, there is a stretch where things feel steady. And I’ve noticed something about these steadier stretches. I think I’m in one right now, and I’m grateful for it. But sometimes, when life finally slows down enough for me to catch my breath, I start to forget things. Not the big, important things. Just the little details.

The constant test of parenting

Caroline is 8 now. Not long ago, a doctor asked me when she first started walking, and I just couldn’t remember.

I know I used to have that answer ready. Years ago, I could have told you the exact date, or at least the month. But now? Nothing came to mind. I knew it was later than most kids, and now, as I sit here, I remember she was 17 months old. But in that moment with the doctor, my mind just went blank.

Another time, a nurse asked about Caroline’s current medication dosage, and I had to pause and really think. I couldn’t answer right away, and I felt so silly. How could I not know something so important?

I’ve spent years making sure I know everything about Caroline. I’ve sat through appointment after appointment, taking notes, asking questions, tracking numbers, and learning words I never thought I’d need to know.

And still, sometimes someone asks me a simple question, and my mind just goes completely blank.

For a moment, I worry about what they must think. Do they think I’m not paying attention? Do they think I’m not prepared, or not doing enough? Deep down, I know that’s not true. But being a rare disease parent sometimes feels like you’re always being tested — not just by the disease itself, but by the people who are supposed to help your child.

For years, I felt like I had to prove I knew Caroline better than anyone else in the room. That’s why forgetting something feels so uncomfortable. It’s not just about a dosage or a milestone. I worry that I’m forgetting how to be the parent she needs.

But maybe that’s not really what’s happening. Maybe my mind is just full. There’s only so much a person can hold at once. For years, I’ve carried the heavy things: the decisions, the appointments, the what-ifs, the questions we still don’t have answers for, the things I need to watch for, and the things I hope we never have to face. Maybe there just isn’t space left for the date Caroline first walked.

Is that OK? I don’t think I need to remember every single detail of her childhood to really know her, do I? I know how she laughs. I know what makes her anxious. I know what helps her feel safe. I know when she’s pretending to be fine, and when she needs me to step in or step back. I know the little things that never show up on a medical chart.

That kind of knowing is what matters most. So yes, sometimes I forget. Sometimes I have to look up the dosage or admit, “I’m sorry, I can’t remember exactly when she started walking.” And I do feel a little silly. But I’m learning to remind myself that being a good parent isn’t about having every answer memorized.

If you’ve ever sat in a doctor’s office, stared blankly at a simple question, and wondered if you’re the only one whose brain just can’t hold any more, I want you to know this: You’re not alone. Forgetting doesn’t mean you’re failing. Sometimes it just means you’ve been carrying so much for so long.

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.