Perspectives of The Pompe World

As a parents of a child with Pompe Disease, I am always watching my back. Pompe isn’t at the back of my mind—it’s the front too. This is most obvious when I notice something off about my child. Every minor thing I notice, I catch myself asking “is this Pompe?”

That milestone that’s a little late.

That break they take in between stairs.

That cough that just lingers.

The struggle to climb on the playground.

I’ll never let these observations pass me by. They’ll never be chalked up to nothing. I’ll never shrug my shoulders and skip that second thought. It’s going to sit with me, and I’ll watch for it tomorrow. Then I’ll carry it to an appointment with my fingers crossed that it’s not what what I think it is.

We are on alert for everything, because we know it’s coming. We don’t have the luxury to dismiss even the smallest things we notice because Pompe is around the corner, sooner or later.

We jump to conclusions.

We compare.

We assume.

We fear the worst because we know the worst will meet us, if it hasn’t already.

I’m really working through this hyper vigilance and it’s so incredibly hard to change. And I’m not sure I’ll ever be rid of this mindset completely and that’s tiresome. I think this is a part of this diagnosis that families don’t speak up about enough because the response is usually something dismissive.

“You can’t do that to yourself.”

“Have faith.”

“Don’t dwell.”

Remaining aware is not dwelling or lacking faith. It’s simply accepting a reality that will come; It’s a forced open door policy and we are trying to be ready for the guest. It’s watching our backs so we aren’t blind sided because we know, ready or not, here it comes.

Because we know, we are able to prepare. Because we know, we live with fear. Because we know, no time will be wasted.

Because we know, we suspect.

We will always overthink every minor observation because we have to, but I’d still take that over being in the dark.