Columns

Typically, my 5-year-old son, Cayden, who has infantile-onset Pompe disease, has no problem going away with family for the weekend. He used to spend weekends with either my grandparents or his paternal grandmother. But that’s changed, as he now refuses to leave my side. It all started a few…

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…

This past week has been heavy on my heart, with my mind full of anger and frustration. I just want to go to the driving range and hit a bucket of golf balls to release some of the stress. While these feelings are not about my journey, they are…

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…

This past week, my best friend, Joe, and his son Dane came from Montana to visit me in California. I decided to take Monday off from work to meet up with them so I could watch Dane, an adventurous young man, as he went rock climbing. In fact, he’s been…

Every other week, my son Cayden, who’s almost 5, receives an enzyme replacement infusion as part of his treatment for infantile-onset Pompe disease. The infusion typically takes about six hours, and although we’re used to the routine, it does make for a very long day. Cayden has…

Growing up, I got all my information from newspapers and encyclopedias. I used a typewriter to send letters to friends and family about special occasions. It seemed like it took forever. Then came computers, which changed everything. Information was now accessible as fast as my dial-up modem could connect. Today,…

My soon to be 5-year-old son, Cayden, goes through a lot at his young age. Due to his infantile-onset Pompe disease, he has experienced many hardships. One of our current struggles is getting him to let me administer his breathing treatments. One symptom of Pompe disease is breathing problems.

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…