Watching my daughter suffer through infusions is an emotional tug-of-war
None of the answers to her questions seem fair
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I could sense from the moment we woke up that this infusion day was going to be a tough one.
Over the past several months, I’ve shared how my 7-year-old daughter Caroline’s relationship with her infusions has been changing. When she was younger, she cried because she was scared of the needle or because she didn’t understand what was happening. Those moments were heartbreaking, but in some ways they were simpler. Now she’s older and understands far more than I wish she had to.
That awareness has changed everything. She’s starting to want some control over things, even though this whole process gives her so little of it.
The truth is, she wants nothing to do with any of this. She doesn’t want Pompe disease. She doesn’t want to have her port accessed every other week. She doesn’t want to spend hours hooked up to an infusion pump while other kids are out swimming, playing, or just living their lives without having to think about the next doctor’s appointment. More than anything, she just wants to feel like everyone else.
Lately, her questions have become harder to answer. “Why did I have to be born with Pompe?” “Why am I the only one in our family who has to do this?”
There isn’t an answer that makes those questions feel fair. I can talk about genetics. I can remind her that none of this is her fault. I can tell her how strong she is, and how this medicine is helping her muscles. But none of that takes away the feeling that life has given her something she never wanted.
I watch the struggle on her face every time her port must be accessed. She tries so hard to be brave. I see her giving herself a little pep talk. She takes a deep breath, squares her shoulders, and pushes her chest forward, telling herself, “I can do this.”
But then reality sets in. She remembers it might hurt. She remembers the time she pulled away and the nurse had to adjust the needle, which made it feel worse. Her shoulders drop. The confidence slips away. She turns inward, curling up like a little turtle trying to hide. I can see her wanting to protect herself from what’s coming, even though she knows she has to sit still and let it happen.
As her mom, I see both sides of her at once: the little girl who is trying so hard to be brave, and the little girl who just wishes she didn’t have to be.
Wishing it could be different
That emotional tug-of-war might only last a few minutes, but when you’re sitting next to your child, it feels like forever. I wish I could take a little bit of the burden away from her. Today’s infusion reminded me that sometimes the hardest part isn’t the needle, the medicine, or the hours spent by the IV pole. It’s watching your child struggle with the reality that this is just part of her life, and quietly wishing it could be different.
Today’s infusion was one of the hardest we’ve had. Caroline resisted for over an hour. She was on an emotional roller coaster, getting ready to go and then backing out again. She knew she was overthinking it, and she told me so. She kept talking to herself, trying to find some calm.
She begged me not to make her do it. “Mom, please. I can’t do this. I really can’t. It’s going to hurt me,” she said, looking up at me with those big, watery eyes. I looked at her small body in the chair, a pillow behind her to help her sit up straight. The nurse and I were both in position, ready to help. The nurse was holding her port with one hand and the needle in the other. I held the numbing spray in one hand and let her squeeze my other hand as tight as she needed. We both leaned in, waiting for her to say “Go.”
With every back-and-forth, I could feel my patience thinning and frustration setting in. I knew if I let her see even a moment of irritation, we would be back to the beginning. I constantly struggle with when to let her control the process and when to push her. After all, it has to get done. Her nurse has other patients to see, Caroline has to get to school, and the medicine needs to be mixed. And it all rides on Caroline’s ability to muster the courage.
My heart aches in these moments. I feel so drained and helpless. I wish I could make it all disappear for her. But right now, what she needs most is my patience and my hand to hold. And honestly, I need hers just as much.
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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