parenting

A few days ago, my 6-year-old son, Cayden, woke us up with quite a surprise. We were getting everything ready for his biweekly enzyme replacement infusion, the treatment for his infantile-onset Pompe disease. When I woke up Cayden that morning to get him prepared for the day…

Last week was a busy one for our family. In addition to delivering a talk about Pompe disease to my son Cayden’s kindergarten class, we also celebrated his sixth birthday. The week was filled with fun and joy as Cayden was able to celebrate another year of life.

My 6-year-old son, Cayden, and I plan to put together a small presentation about his infantile-onset Pompe disease for his kindergarten class later this week, in recognition of Rare Disease Day on Feb. 29. Unfortunately, he’ll have to miss school that day because he’s scheduled to get his…

Last week, my 5-year-old son, Cayden, and I spent a few hours preparing for his Valentine’s Day celebration at school. He’s in kindergarten, so it’s the first year that we got to make Valentine’s Day cards for his class. We even took it a step further and filled goody…

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…