Perspectives of The Pompe World

Having a healthy child is not all that matters. I saw that written somewhere and I think about it so much.

I was the woman who prayed over my belly and thought “please just be healthy.”
As if the worst thing that could happen to my child was to have medical complexities.

Don’t get me wrong, I’d take it back if I could.

I spare my family the heartache and worry and spare her the future struggles she will face with Pompe being a part of her life. I struggle with admitting that I’d change it. I wouldn’t change her but if given the choice between Pompe or no Pompe, I’d choose the latter.
Still, that doesn’t mean having a healthy child is all that matters.

I get to watch her develop. I see her laugh and enjoy things. She’s not in debilitating pain or misery. I feel certain she will do amazing things in her life, obstacles and all. There is life outside of healthy children, and that life matters too.

There is nothing wrong with hoping you have a healthy child. But children are so much more than their circumstance and I stand incredibly and humbly corrected.

I’m sorry that I believed that this life was any less.

I’m sorry I let my fear of what could be wrong overshadow all that is right.

I’m sorry that I believed that the children born “unhealthy” was a “worst case scenario.”

And I’m also sorry to say that only having an “unhealthy” child could have shown me I was wrong.

I feel a twinge of guilt thinking back to saying “as long as she’s healthy.” I still love and value her where she is and don’t ever want her to think that she’s anything less than her “healthy” brother. Though I’d change it for her own sake, there is so much more to life. And I learn more and more every day that there are so many things you can be that are worse than not being “healthy.”