parenting

Last week, both of my children ended up sick. It started off on Memorial Day when my 5-month-old son, Kyree, developed pink eye. The doctor’s office was closed on the holiday, but I got him seen the next day. Aside from the pink eye, he was acting completely normal and…

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…

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…

Living with or caring for someone with a rare disease means that life is often hectic. Between the endless appointments with specialists, infusions and other therapies, getting sick, and other responsibilities, it can feel like there’s barely any downtime. Eventually, one grows accustomed to the lifestyle, which makes things…

Soon, I will attend a meeting to discuss transitioning my 4-year-old son, Cayden, to elementary school during the next school year. I’m both nervous and excited about the meeting and the transition. I knew this day would come, but it feels as if it snuck up on us faster than…

As parents, we tend to put our children before ourselves — especially when they have special needs. Some of our children require numerous therapies and appointments with specialists. They may also need more help than other children their age. As a result, parents must make some sacrifices from time…

Parents of children with late-onset Pompe disease (LOPD) that is identified via newborn screening report not receiving enough information, guidance, and support, which leads to feelings of frustration and anxiety. That’s according to the study “Newborn screening for Pompe disease: Parental experiences and follow-up care for…

Being a parent can be exhausting. Whether the child is a newborn, a toddler, or even a bit older, there are some days when we hear the alarm go off or wake up to our kids crying and mumble, “Just five more minutes, please!” I knew what I was getting…

Last week, my 4-year-old son, Cayden, had a telehealth appointment with a pediatric psychologist. She works in the behavioral health clinic at the children’s hospital where we take Cayden for all his other specialists. The appointment was recommended by his metabolic doctor, whom we see every three to…

A few months ago, I had to make the hard decision to pull my 4-year-old son, Cayden, out of his preschool class. It wasn’t easy because I knew how much he enjoyed it. At the time, though, his health was at stake. Cayden has infantile-onset Pompe disease, which…