How my daughter’s medical backpack became a symbol of freedom
With it, she avoids being tethered to an infusion pole in the hospital
Written by |
A few days ago, I stumbled across Caroline’s old infusion backpack tucked away in the far corner of her closet. For a second, I barely recognized it — soft and pastel, the color of cotton candy, and shaped like a unicorn cat — it was so clearly a piece of little-girl Caroline.
Caroline was just 5 when that backpack became part of our daily routine. We had only recently started doing infusions at home instead of at the hospital, and we needed a way to carry her medication with us. The backpack was tiny, just like she was, and there was barely enough space for her medication bag and — if we packed it just right — her favorite little lovie, a little plush monkey that is her whole world. It has a worn face and matted fur and smells like her. Being able to sneak “little monkey” into her bag was her way of getting through the day. That was all she needed: her medication and her lovie. One was life saving, the other was the thing that made her feel safe and comforted.
Taking ownership
Now, four years later, Caroline carries a very different backpack. It’s pale pink corduroy, much more of a big girl bag than the unicorn cat ever was. There’s a bit more hardware, a bit more structure, and somehow, still not quite enough room for all the things she wants to bring along. Yet she still manages to tuck her lovie inside, and I can’t help but smile at picturing that little monkey hidden away as a secret companion in her classroom. Some things change, but some things stay the same.
I held that old backpack for a while, surprised by how emotional it made me. My mind went back to those early days of home infusions, when everything felt so new and a little bit scary. I couldn’t help but think about how much Caroline has grown since then.
That tiny backpack belonged to a little girl who relied on me for almost everything. I was the one who packed it, carried it, double-checked that the medication was inside, and made sure her lovie was tucked in, too. I worried every time we left the house, hoping we had everything she might need.
Now, Caroline can tell me exactly what she needs. She knows her routine, her medication, and what should go in the bag and what can stay out. She even has her own ideas about where everything should be packed. She’s starting to take ownership of parts of her care that used to be handled only by her nurse or me.
A backpack of freedom
From the outside, there’s nothing about the backpack that would make you think it’s anything other than an ordinary backpack belonging to a typical third grader. It holds the usual collection of treasures that seem to multiply in a child’s bag: tiny trinkets, maybe a NeeDoh squishy, a few crumpled pieces of paper. But tucked in among all those little pieces of childhood is something most people — especially her friends at school—would never guess is there. Her medication. It’s been part of her childhood for as long as she can remember.
And maybe that’s what makes this backpack such a perfect symbol of raising a child with a rare disease. What was once an infusion pole in a hospital room — something I used to think of as a tether — has become something that lets her move more freely. Somewhere along the way, this stopped being just a bag that carries her medication. It became a symbol of growth, independence, and freedom.
Bringing her treatment home four years ago changed everything for us. Suddenly, care could come to us, instead of us always having to go somewhere else. Her world got a little bigger. And now, as I watch her grow, I see a new kind of freedom unfolding. She is becoming more independent. She is learning to carry things for herself, literally and figuratively.
As parents, we spend years carrying things for our children, until little by little, they start carrying them on their own. Sometimes it’s just school supplies. Sometimes it’s a favorite lovie. And sometimes, it’s things no child should ever have to carry. But Caroline does. And she does it while looking just like every other child walking into school.
Maybe that’s the beauty of the backpack. It doesn’t announce what’s inside. It just goes wherever she goes, always making space for the things that help her feel safe. And somehow, she still finds a little extra room for her lovie.
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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.