What ‘lucky’ really means for a child with Pompe disease
When someone says we are lucky, I know they're only seeing part of the picture
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When people meet my daughter Caroline, they sometimes tell me how lucky she is.
They say she is lucky to have such a supportive family. Lucky to have parents who advocate for her. Lucky to have access to the treatment she needs. Lucky to have a sister who looks out for her, and a nurse who can go to school with her.
I know what people mean when they say this. They are trying to find something positive in a situation that can feel anything but positive. They are trying to remind me that, despite Pompe disease, Caroline has a good life. And she really does.
Still, when someone tells me how lucky we are, I sometimes want to gently remind them that they’re only seeing a small piece of our story. There is so much that happens behind the scenes that most people never notice.
They don’t see the way we juggle appointments around school and activities, or the quiet talks my husband and I have after the kids are asleep. They don’t see me watching Caroline, noticing when she seems a little more tired than usual, or wondering if something is just normal kid stuff or something I need to worry about.
They don’t see all the mental math or the worry that sits quietly in the background. They don’t know how often we think about a future that most parents try not to imagine. And they definitely don’t see the days when I wish, more than anything, that I could just stop thinking about Pompe for a little while.
A different kind of luck
But I don’t think people are wrong when they say we’re lucky. I just think we see luck differently. For me, we’re lucky because Caroline is here. We’re lucky because she laughs so loudly that sometimes I have to remind her to settle down. We’re lucky because she has friends, goes to school, gets annoyed with her siblings, complains about dinner, and always thinks she should get to stay up later. We’re lucky because there are days when Pompe is just a small detail in the background of her childhood.
Those are the days I hold the closest. It’s not because I am grateful for Pompe. I will never be grateful for a disease that has made my daughter go through things no child should have to face. What I am grateful for is the ordinary. The boring days. The afternoons when she is running through the house and I have to call out for her to slow down. The arguments over whose turn it is. The messy bedrooms, the forgotten homework, and the complaints about vegetables.
I’m grateful for those moments when I look at her and realize I’ve gone hours without thinking about her diagnosis. Those are the moments that feel like real luck to me. That’s what I wish people understood.
We don’t have to find a silver lining with Pompe. We don’t have to tell ourselves that everything happens for a reason. We don’t need to turn Caroline into a story about strength or resilience. She is a little girl, and she deserves to be seen that way.
So, yes, Caroline is lucky, but not because of Pompe. She is lucky because she gets to be a kid. And I am lucky because I get to be her mom. That is more than enough for me.
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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