parenting

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…

Oftentimes, parents of children with rare diseases don’t have time to focus on themselves. We have so much on our plates because of everything that our children go through. This causes us to push our problems aside, especially when it comes to mental health. I recently found myself…

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…

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…

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…

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…

My 5-year-old son, Cayden, will soon be getting a new kindergarten teacher. While this will be a big adjustment for all the children in his class, it will be a bit harder for Cayden, who has some special needs. Cayden’s original teacher recently told us that she has accepted…

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…

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…

I’ve been on the hunt for adaptive clothing for years now. My 5-year-old son, Cayden, does fine with regular clothes, but that’s only because we’ve learned how to make it work. Adaptive clothing is something we all enjoy. It makes using his feeding tube much more manageable. Cayden…