Butterflies and Angels

So I have finally gotten to the point that I need to write about the work I do. It has been a week, let me tell you!

I live in a world where HIPAA keeps me from saying too much about what I do, and when the days are hard and the loss is great, I can only speak in generalities. Gotta follow the rules.

I lost a patient. One of my little butterflies.

A baby.

AGAIN!

I stopped counting at 50, and that was a while ago.

I HATE Epidermolysis Bullosa.
I hate the pain, the itch, and the foreverness of it.

I hate the costs that overwhelm my families. The emotional strain. The financial drain.

The random unfairness.

And yet I meet amazing people every day, folks who fight the good fight. Researchers, doctors, moms, nurses, dads… They work tirelessly. All looking for the day when EB is cured and a thing of the past.

I hope the day comes soon.

Rest in peace, dear sweet child.