Perspectives of The Pompe World

Not today, Pompe.

The majority of the time that phrase is used in the manner of triumph and strength. It’s with pride that I say it, knowing that Pompe isn’t getting us down. And some days, it’s dismiss.

Not today, Pompe. Because today, I can’t.

Because sometimes I feel exhausted and overwhelmed. Sometimes I feel like I need to shift my mental energy and shift my priorities. Sometimes I feel like I need to step back and put Pompe on the proverbial back burner because I am low on steam.

And then comes the guilt.

I’m not doing enough.

I’m not keeping up.

I’m not raising enough, or reading enough, or contributing enough.

When I hear other parents admit this guilt I always think, “they shouldn’t be so hard on themselves. They are doing their best!” But I often forget to extend that grace to myself. So lately, I’m trying to take my own advice. I’m trying to shift my energy, and I’m trying not to feel guilty about it. Because sometimes all you can contribute to the world of Pompe Disease is right within the walls of your home. And if that’s all you’ve got, that’s plenty. Pompe Disease can fuel your fire another time—when you’re up to it. Somedays we are thriving and some days we are surviving and both of those times are okay.

It’s an amazing testimony to say “Not Today, Pompe!” 🙌🏼

But sometimes, it’s also okay to say, “Not Today, Pompe.” 🖕🏼