Daily living

Back in May, I wrote about searching for a more accessible playground for my 5-year-old son, Cayden. My wish seems to have come true, and I couldn’t be happier! A few weeks ago, our town finally reopened one of its biggest playgrounds, which had been closed for a long…

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…

I’ve become so used to my routines that when an abrupt change happens, it throws me off. Recently, a substitute nurse filled in for the one who usually attends school with my 5-year-old son, Cayden, who has infantile-onset Pompe disease. Cayden is accustomed to having a nurse with him…

My 5-year-old son, Cayden, has seen a nutritionist his entire life. In his younger years, this was important because Cayden was underweight. Recently, he has gained weight, but the visits are still necessary because he’s tube-fed. Thankfully, Cayden is able to see his nutritionist at the same time as…

A diaphragm pacer may help people with Pompe disease who can’t breathe on their own rely less on a mechanical ventilator during the day, a small study suggests. Many people with Pompe disease have respiratory problems and require full-time ventilation to support breathing, so being able to breathe without…

My 5-year-old son, Cayden, is on track with most children his age when it comes to height and weight. But we struggled with his weight for years. He was labeled “failure to thrive” when he was just 4 weeks old. It took until about the age of 1 for…

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.

Today is my son Cayden’s first day of kindergarten — a milestone I’ve been anticipating since he was born. While I’m ready for the break, watching him grow up is bittersweet. Kindergarten feels like such a big step compared with preschool. The transition should be pretty easy because…

When Dwayne Wilson found his career to be too physically demanding with Pompe disease, he had to change trajectories. But now, he says, he finds freedom in a cubicle.

A few weeks ago, my grandparents and I purchased a wagon for my kids. I have a 5-year-old son, Cayden, and a 7-month-old son, Kyree. I’ve wanted a wagon for them for quite some time now, and we were finally able to make it happen. While this may not seem…