parenting

My 5-year-old son, Cayden, has been seeing an otolaryngologist, an ear, nose, and throat (ENT) specialist, for years. The first visit was suggested by his metabolic doctors, the ones who manage his infantile-onset Pompe disease. Pompe disease can lead to hearing loss, so they wanted to…

When you become a parent, one of the first things you must learn is patience. Sometimes you’re in a rush to get things done, and then — boom! — the baby is crying or your toddler is yelling your name. At that moment, you have to practically drop what you’re…

In our school district, the first two days of the holiday break were reserved for parent-teacher conferences. I quickly scheduled a meeting with my 5-year-old son Cayden’s kindergarten teacher. Because this year is his first in elementary school, it was also my first time attending such a conference. Before…

Because of his infantile-onset Pompe disease, my 5-year-old son, Cayden, has always relied on a feeding tube for nutrition. For the first six months of his life, he used a nasogastric, or NG, tube. After that, he needed something more permanent, so he underwent surgery to have a…

Last week, my 5-year-old son, Cayden, had a checkup with his cardiologist, the specialist who monitors his heart. Cayden has been seeing a cardiologist since he was just 1 month old. Back then, his heart was severely affected by his infantile-onset Pompe disease. It has since corrected…

This year, Thanksgiving felt quite special. For starters, it was the first time I celebrated with both of my kids. My youngest, Kyree, turns 1 three days after Christmas, and so far, his first holiday season has been so much fun. As I reflected over the holiday, I took some…

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…