‘Don’t touch the IV pole’: Talking to a toddler about Gaucher disease
Children look to the people around them for cues
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One of the questions I never expected to face as a parent is how to explain a chronic illness to a toddler.
My son is almost 2 years old, which means he doesn’t understand much about Gaucher disease. He doesn’t know what a genetic disorder is, why I need enzyme replacement therapy every two weeks, or what happens during an infusion. Most of the time, he doesn’t even see my treatments. They’re usually scheduled while he’s at daycare, and by the time he gets home, everything has been packed away.
But recently, he was home on infusion day.
Like any curious toddler, he was immediately drawn to the IV pole standing in the living room. It was new, interesting, and clearly something that needed to be investigated. He wanted to touch it, examine it, and wheel it around the room.
We gently told him he needed to be careful and not touch it. We explained to him that it was medicine to make me feel better and keep me healthy.
He looked at the IV pole, smiled, waved, and said, “Hi, medicine.” I couldn’t help but laugh.
I found myself looking at the IV pole differently in that moment. Instead of seeing infusion equipment, treatment schedules, and all the things it represents in my life, I saw what my son saw. Through his eyes, it was simply “medicine” — the thing that helps Mom feel better.
That’s how we’ve always talked about my infusions with him. We keep it simple. We tell him that Mom gets medicine that helps her feel better. We tell him that Mom has to sit still while she gets her medicine. And we tell him that Mom is brave.
At his age, that’s all he needs to know.
Keeping it simple, for now
Children tend to see things much more simply. They don’t immediately think about diagnoses or long-term health implications. They look to the people around them for cues. They want to know whether the people they love are OK. They want reassurance. And often, they accept explanations far more easily than we expect them to.
Watching my son wave at the IV pole made me realize that children don’t necessarily see illness the way we do. To him, there was nothing scary about the equipment. It wasn’t a symbol of disease. It wasn’t a reminder of all the things that come with Gaucher disease. It was just medicine. I think there’s an important lesson in that.
As parents with chronic illnesses, we often worry about what to tell our children and when. We want to be honest, but we also want to protect them from worries they’re too young to carry. We wonder whether they’ll be scared, confused, or upset when they start to notice doctor appointments, medications, and other treatments.
But children are remarkably adaptable. When something is presented as a normal part of life, they often accept it as such.
That doesn’t mean hiding the difficult realities of chronic illness. As our children grow older, they’ll deserve more detailed explanations and honest conversations. One day, my son will understand what Gaucher disease is. He’ll learn why I need treatment and what it means to live with a lifelong condition. For now, though, our conversations are much simpler.
The medicine helps Mom feel better. Mom sits still for her medicine. Mom is brave.
And judging by his cheerful greeting to my IV pole, that seems to be enough.
Note: Gaucher 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 Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.
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