Perspectives of The Pompe World

In our society as a whole, being brave is celebrated. Bravery is a thing which makes us pour our thanks, swell with pride, and ignite with inspiration. It’s in the feel-good stories and the news spotlights. Bravery is pulling from deep within and boldly doing a hard thing, and this is 100% a characteristic that deserves all the praise. But sometimes, the bravery isn’t a conscience choice, and the brave thing is being done because it just simply has to be, and that is the kind of bravery we celebrate with a knot in the heart.

It’s another one of those truths in juxtaposition. Two honest feelings at odds and taking up the same space; my child’s bravery fills my heart with pride, and it also breaks it. Awe and ache. Pride and grief. Inspiration and devastation. 

Riding through days with Pompe Disease means my child simply has to be brave sometimes. And while my initial response to seeing her bravery is pride, I immediately sink under the pressing ache of “I wish you didn’t have to be.” 

I’m grateful the tests, procedures, treatments, and appointments are just a day in the life for you, and I’m in awe of how you handle it all with the best attitude you can, despite the fear you feel. But I’d trade a world’s worth of the finest things if it meant you didn’t have to. I know that life will demand your bravery over and over again, and I’m certain you’ll continue to deliver, but I wish you had the choice. I also hope you know that in the times you don’t want to be brave, my pride will not shake. I will meet your fear and exhaustion with grace, and I will celebrate you all the same. Because I know that while you sometimes make it look easy, being brave is still a hard thing to be so often. And oftentimes for you, it’s a hard thing that just simply must be done. And I’m sorry for that. 

There are so many attributes that encompass my child that I am so fondly proud of, but for a medically complex child, bravery is a prickly pear. As parents, we are both in awe of their courage and strength, and enraged at the reasons they possess it. Another two truths warring at the center of navigating life with a rare disease as a reality-bravery that tastes a little bitter.