parenting

When a child is diagnosed with Pompe disease, they’re not the only person affected. The disease changes everything for the entire family. Suddenly, schedules and priorities shift. One of the hardest things for me as a parent was figuring out how to talk to my other children about what…

Parents face significant anxiety and uncertainty after their newborn screens positive for a lysosomal storage disorder (LSD) like Pompe disease, but these emotions usually resolve over time once families receive clear, comprehensive information, a new study finds. However, researchers warn that this anxiety often persists in parents whose children…

Often my columns are concerned about my oldest son’s health, given his rare disease. This week, however, I had reasons to worry about and care for my broader family’s health — including my own. Recently, I had to take a break from writing, as I’ve been dealing with some personal…

It’s been over six years since my son Cayden was born with infantile-onset Pompe disease. Today, I consider myself to be an experienced parent when it comes to this disease. However, I’ll never forget what it felt like to hear the news of Cayden’s diagnosis. It’s almost an indescribable…

Next week, my 6-year-old son, Cayden, will celebrate something even more exciting than Halloween: He’ll be headed to Parris Island in South Carolina to watch my younger brother, Ben, graduate from the Marine Corps. I’m so thankful that Cayden has the opportunity to watch his uncle celebrate such…

Life has been a bit hectic lately. My family has many changes coming up, and each one brings its own challenges. I’ve lived in the same town for most of my life, as have my children. But that may soon change. Our family is growing, and we’ll be welcoming another…

At the young age of 16, I gave birth to my now 6-year-old son, Cayden. Like any new parent, I had to learn patience. I was raising a child while I was still a child myself, and it was no easy task. However, I quickly discovered that I would learn…

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…

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…

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…