Something I never expected about raising kids with medical conditions is how much people rely on appearances to decide who is “sick” and who isn’t. Before rare disease became part of our family, I’m sure I did this, too, without even thinking about it. Most of us do. We think…
Relationships
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…
When people hear about in vitro fertilization (IVF) after a rare disease diagnosis, they probably think the hardest part is either the cost or the medical side of things. Those parts are definitely overwhelming. But for me, the hardest part wasn’t the science; it was the question that kept circling in…
Our family spent last week in Florida for spring break. We skipped the theme parks and wild adventures this time, choosing instead to stay at a hotel by the beach. The kids loved bouncing between the pool and the ocean, and we all got a chance to slow down and…
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…
You get the call. It’s rare, they say. Probability is low, statistics meant to comfort. They assure you this doesn’t happen often. But sometimes, despite all the reassurances, rare things happen anyway. When it happened to us, I immediately wondered what I could have done differently. I blamed myself for…
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…
Two weeks ago, I gave birth to another beautiful baby boy named Kylan. Our family is ecstatic about our new addition, and Kylan feels like the last piece to our puzzle. My 6-year-old son, Cayden, and 20-month-old son, Kyree, love to hold him and help do things for their baby…
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…
Recent Posts
- Learning to be comfortable with the uncomfortable as a rare disease parent
- New GAA mutations destabilize key enzyme in Pompe disease: Study
- The things people say when they don’t know what to say
- Combination therapy helps control allergic reaction to ERT for Pompe
- Pompe disease hasn’t changed my desire to have a friend and be a friend