Wanting to blend in, so the rare care isn’t the first thing that’s seen
My daughter's infusion fell on the second day of school, and that made her worry
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The first day of school is usually about freshly sharpened pencils, new backpacks, and figuring out where to go after lunch. But for my daughter Caroline, the first day this year was about feeling anxious — not just about the first day, but about whether she would make it through the second day.
Summer seems to make life feel a little less complicated. We have pool days, late nights, and ice pops just because. There are fewer schedules to juggle and not as many reminders on the calendar. For a handful of weeks, we get to just be a family, doing all the summer things together.
But then school starts, and everything shifts. The rhythm changes, and so do we.
This year, Caroline’s infusion landed right on the second day of school. By now, she knows what to expect, and, honestly, so do her classmates. They’ve seen her come in with her nurse, watched her get her vitals checked between classes, and seen her leave for the nurse’s office before the bell rings. They know about her special backpack, the medication, and the tubes. For them, it’s just part of the school day.
Afraid of being noticed
But that didn’t stop Caroline from feeling nervous. It wasn’t the infusion itself that worried her — that part is almost routine now. What made her anxious was wondering what her classmates would think.
“What if they forgot?” she asked.
She worried that her classmates had forgotten over the summer what the tubes were for. Maybe they would stare. Maybe someone would ask questions. Maybe she’d have to explain something she didn’t feel like talking about. For Caroline, Pompe disease is part of her everyday life. For everyone else, it’s only something they notice when they see her with her tubes and medication. And that’s only every other Wednesday, when she’s getting her infusion. On most days, Caroline blends right in.
It struck me how much her fear sounded like something only an 8-year-old would worry about. She wasn’t afraid of being sick. She was afraid of being noticed, something we all understand. We want to fit in. We want to walk into a room and feel like everyone else. None of us want the thing that makes us different to be the first thing people see.
The funny thing is, Caroline really does fit in. She goes to school, plays with her friends, gets excited about recess, and even worries about homework, just like everyone else. Her classmates have grown up with her, and in a way, they’ve grown up with her rare care, too.
Still, there’s a part of her that wishes she could leave the rare part of herself at home when she heads off to school, and I can’t blame her for that.
As her mom, I’ve spent years learning how to make space for all the medical parts of our life. I know the schedule by heart. I know what supplies we need. I know which questions to ask and how to get her ready for an infusion. I know how to help her on the days when she doesn’t want to talk about it. But sometimes I forget that she’s still learning how to handle all of this herself.
She is learning when she wants to explain and when she doesn’t. When she wants someone to help and when she wants to handle it on her own. When she wants to be brave and when she wants to be just another kid walking into school with a backpack.
That second day of school wasn’t really about an infusion. It was about transition, and about a little girl wondering if the people around her will remember the parts of her that make her different — or, better yet, if they’ll remember that those parts aren’t really what make her her.
But when Caroline walked back into school with her backpack full of medication and tubes, something wonderful happened. Nobody made a big deal about it. Nobody needed an explanation. Her friends picked up right where they left off.
And that’s what rare care looks like sometimes — not making something disappear. Not pretending it isn’t there. It’s making enough room for it so that eventually everyone, including the person living it, can get back to being a kid.
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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