grief

When life challenges go far beyond Pompe disease

Have you missed me since October? Did you wonder if something Pompe-related had happened to me? Did I get lost “on the road to Pompe,” or did my engine break down somewhere? Truth be told, I got lost in a bank of fog and didn’t know when it…

The Importance of Caring for My Mental Health During the Holidays

In some alternate reality, receiving my diagnosis of late-onset Pompe disease would’ve made all my problems go away. But in this universe, my rare disease is only one piece in the puzzle of my life. Six months before my diagnosis, our oldest son, Adam, passed away at age…