Perspectives of The Pompe World

Since I thought I’d lose you, I am not the same. In both good ways, and in more complicated ways, I am changed as a parent.

I am more afraid now. The fear that shook our lives has crept into every corner of my mind and takes the stage from time to time. Like I don’t trust the ground I stand on to hold me up, I am on guard. Hyper vigilant. Unsettled. Every lab that results will hitch my breath. I will anticipate every appointment with nervousness. I will think about your future with heavy uncertainty, and worry.

I am also more grateful now. The small things feel so big. Every milestone feels like a gift instead of an expectation. I know how much harder your body has to work towards these and it makes me so proud. The deep appreciation I have to experience every day with you makes me feel so isolated from the parent I was before. I was naive then. I took so much for granted and nothing could have made me see that like the raw fear of losing you. I appreciate every day through a new lens.

I have been humbled. The picture I had in my head about what life would be, looks different now. There are considerations, accommodations, and limitations, and these are hard and frustrating at times. But they’ve also allowed me to see another side of things, and I needed to see that side. I feel empathy and connection to others whom I never could have understood before. It’s much easier to accept now that you really shouldn’t sweat the small stuff, and life doesn’t go our way, but I’ve learned to appreciate it as it is.

Relatability is so rare. We are now members of this exclusive club of people who share a struggle. And while I appreciate that tribe so much, I feel isolated at times from the majority. I can’t make them understand how we’ve changed, how we worry, or this unique thought process. They’ll never understand and while I am happy they won’t, it makes the parenting journey feel a bit lonely too.

Our priorities have shifted. Finding ways for you to lead a normal life, while also understanding that there may be limitations have been key for me. I will not put physical abilities and physical strength on an achievement pedestal. Maybe sports are out of the question, but at least you can attend school. Maybe you won’t dance ballet or earn a black belt, but at least you can walk. Your bedroom walls may not be lined with trophies, but I know in my heart that your achievements will be no less on their own scale. And I am proud of everything you do nonetheless.

I am stronger now. I never thought I wasn’t strong before you, but after you does not compare. Thinking I’d lose you completely depleted me, and then it fueled me. It ignited something in me that I did not have before. Strength that surprised me, determination that drives me, and hope that keeps me upright and onward. I am better for this and have additional purpose in life. Even in my weaker moments, I know I’m stronger than ever.

Since I thought I’d lose you, I am changed. This change was hard and sometimes resisted, but absolutely necessary. This change made me the parent I need to be for you. And considering I once questioned if I’d get to parent you at all, I’ll take it-good and bad.