When I found out that I was pregnant again, I was ecstatic for my 5-year-old son, Cayden, to become a big brother. However, Cayden has infantile-onset Pompe disease, and I’d be lying if I said that a part of me wasn’t nervous. Because my second child has a…
Relationships
My 5-year-old son, Cayden, had a blast in preschool this year and made lots of new friends. I was nervous he wouldn’t make any because he’s a bit different from the other children in his class. However, I quickly realized I had nothing to worry about. Cayden has…
Having two young children has already been quite an experience. They depend on me every single day, though, thankfully, they’re pretty easygoing. I’d been a little nervous about their almost five-year age gap, but the way they’ve formed a bond has been amazing to witness. It’s so sweet to watch…
Back in the day, I had to do a report for school and needed information about a country. I don’t remember which one, but I remember asking my mother for help writing the report. Her response was, “Go grab the Encyclopedia Britannica, the one that starts with the first letter…
When I was diagnosed with late-onset Pompe disease in 2018, I didn’t know what my life would look like moving forward. When I was told the disease had no cure, my mind went into a tailspin, taking me down into a deep, dark place. However, my doctor…
Recently, we were putting things in place for a road trip this summer. We’d planned to attend a pediatric Pompe disease conference in July, hosted by Duke University in North Carolina. My grandmother was going to come along with my 5-year-old son, Cayden, and me. However, the conference was…
Last week, my 5-year-old son, Cayden, had his first karate class. His preschool class took a field trip to a local karate center. Parents were invited to join in on the fun. While neither of us had ever done karate before, it certainly was fun. I really enjoyed spending…
When I was younger, I never imagined that I’d become a teen mom. I was scared to share with my mom the news that I was pregnant. I didn’t know how she’d react because she’d been a teen mom, too, and that was the last thing she wanted for…
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…
One of the first things people notice about my 4-year-old son, Cayden, is his lusciously long locks of hair. While some people love it, others aren’t so ecstatic that he’s a boy with long hair. I personally don’t believe that long hair is for a specific gender, but not everyone…
Recent Posts
- Watching my daughter suffer through infusions is an emotional tug-of-war
- Noninvasive muscle test may measure Pompe disease severity: Study
- Learning to translate the language of Pompe disease
- Cell, muscle repair proteins linked to Pompe disease progression: Study
- Next-generation therapy may help babies with Pompe live longer, better