Daily living

Back in the summer of 2018, when I started experiencing some serious symptoms, I wondered if I had ALS or another similar disorder. I noticed I wasn’t able to stand up from a seated position. If I was sitting on the couch, I’d have to extend my arms…

My 5-year-old son, Cayden, recently started a preschool program. When he started going, I was a little paranoid about whether he’d make friends. After a month there, however, he sure has made a few. I was concerned because Cayden has weak muscles from his infantile-onset Pompe disease; it’s…

Today, March 17, is the day to celebrate all things green and Irish. Look for a four-leaf clover and have some Lucky Charms for breakfast because they’re “magically delicious.” Drink some green beer and have corned beef and cabbage for dinner. Search for the pot of gold at the end…

My 5-year-old son, Cayden, was really looking forward to starting preschool at the end of February. But after only a week of school, he became sick. While this didn’t really come as a surprise, it was a bit disappointing. I know that colds and the flu can spread like wildfire…

Last week, we celebrated my son Cayden’s fifth birthday. Birthdays are a big milestone for all children, but this year felt extra special for us. I never knew if I would see this day, and I’m so thankful that I did. Cayden was diagnosed with infantile-onset Pompe disease…

Sometimes I wonder who designed spaces that are labeled accessible. Were the engineers or architects disabled? Did they actually understand the needs of wheelchair users, or did they simply do the minimum needed to comply with the Americans with Disabilities Act (ADA)? Was a disability plaque attached just for…

My 4-year-old son, Cayden, has been seen by many different specialists over the course of his life. I often wonder how he feels about all of the medical appointments. At this age, most of his peers only see the doctor for well-child visits or if they become sick. In…

In today’s world, nurses are in high demand, and thus they’re also hard to come by. Because of this, my 4-year-old son, Cayden, who has infantile-onset Pompe disease, is unable to attend preschool at the moment. Awhile ago, I wrote a column about…

Growing up, I was mostly a healthy, overweight kid who seldom got sick. As an adult, I’ve had a career in the office equipment industry for over 30 years and have always had health insurance through my employers. No matter what type of plan was offered, I’d always pick the…

For 25 years, my vacations had always revolved around visiting family. My wife and I would pack up the minivan and take our four boys to Southern California to visit Grandma. We did all the fun things, such as visit amusement parks and the beach. But the thought of traveling…