Coping methods

After my daughter Caroline was diagnosed with late-onset Pompe disease, I never imagined how complicated the idea of stability would become for our family. Before rare disease entered our lives, stability felt simple. It was something you wanted, something you worked toward, and something that brought comfort and peace.

When my daughter Caroline was diagnosed with Pompe disease, I knew life would look different. I figured our routines would change, our priorities would shift, and our days would suddenly be filled with appointments, infusions, and medical conversations I never imagined I’d have. What I didn’t expect was how…

We’re back in the waiting room at the geneticist’s office. Since my daughter Caroline was diagnosed with late-onset Pompe disease at birth, these appointments have become part of our routine. Today, she’s 7 years old and kneeling on a seat two chairs away from me so she can look…

For me, one of the hardest parts of parenting a child with Pompe disease hasn’t just been learning all the new medical terms or keeping up with appointments. It’s the decisions. The ones that don’t have clear answers. The ones that keep me up at night, long after the…

My husband and I have been together for 20 years. We met in college, dated on and off, and got married 13 years ago. We decided to wait a few years before having kids so we could enjoy things like traveling, sleeping in on weekends, and having control over our…

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…

Sean Doerr is sometimes known in the Pompe community as the man with the ambulance-turned-motor home, which he affectionally calls the “PompeTrek.” Sean has Pompe disease and type 1 diabetes. I recently spoke with him via video chat about what it’s like living with these two chronic illnesses. Excerpts…

The past six months with my newest baby boy, Kylan, have been pure bliss — apart from his acid reflux. For the first three months, Kylan was strictly breastfed. Everything was going well with my supply, and he was getting plenty of milk. However, he was constantly spitting up. Kylan…

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…

In my last column, as part of “The Pompe Community Diaries” series, I introduced 47-year-old Katy Arvidson, who lives with Pompe disease and is the current Ms. Wheelchair Alaska USA. In a recent video chat with Arvidson, we discussed how finding community helped her mentally. Excerpts, edited for…