Coping methods

It seems like just the other day when I was sitting in the waiting room at the UCI Health ALS and Neuromuscular Center in Orange, California. I was meeting with a neuromuscular specialist for the first time to receive my diagnosis of late-onset Pompe disease. I will…

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…

When you become a parent, one of the first things you must learn is patience. Sometimes you’re in a rush to get things done, and then — boom! — the baby is crying or your toddler is yelling your name. At that moment, you have to practically drop what you’re…

Over the summer, I lost someone very dear to my heart. My grandfather passed away on July 18 at 75 years old. It took me quite some time to come to terms with his death, even though we knew it was coming. I still find myself in tears when I…

Last week, my youngest son, Kyree, went in for surgery at only 9 months old. I was a nervous wreck as the date for the procedure got closer and closer. However, I’ve been down this road many times with my 5-year-old son, Cayden, who has Pompe disease. My experiences…

Over the years, I’ve had to make countless hard decisions for my 5-year-old son, Cayden, who has infantile-onset Pompe disease. He’s had surgeries, adaptive equipment, and appointments that haven’t been easy. I guess you could say I’ve gotten used to such decisions over time, but that doesn’t mean…

When I was in my 30s, I started having issues with my lower back. Muscle stiffness often led me to the chiropractor for an adjustment. Sometimes I could barely walk or rotate my body, which would necessitate a trip to the physical therapist. Most of the time, I was told…

My 5-year-old son, Cayden, has been through more in his few years of life than most adults have in all of theirs. When he was diagnosed with infantile-onset Pompe disease via newborn screening shortly after his birth, I knew his life wouldn’t be easy. But I had…

Time: It seems like we never have enough of it. It goes by so fast when things are great, but when things aren’t so hot, it seems to drag on. We never have enough time to do all the things we want to do, and then one day, it’s gone.

When I was a kid, I liked to build things with Legos and Lincoln Logs. I had Tinker Toys and Erector sets to build cars, cranes, buildings, and more. All of the blocks, bricks, and logs were of different sizes and shapes, and when they were put together, I had…