Whether a mother feeds her baby by breast, bottle, pumped milk, or formula, it’s all sacred. Feeding a baby is an incredible act of love, and every mama is a superstar for sustaining life in whatever way she can. That said, breastfeeding has been the biggest blessing of my journey…
A couple of weeks ago, I faced a moment that many parents, especially those living with chronic illness, will recognize all too well. As a mom with Gaucher disease, I receive infusions every other week. And with a 10-month-old who’s constantly on the move, I’m always juggling how to…
Living with Gaucher disease often means relying on medication. Enzyme replacement therapy (ERT) is the foundation of my symptom management. But while ERT plays a vital role in my health, I’ve come to believe that it’s not the only key to me feeling better. In fact, focusing solely…
Last week was a busy one — so busy that I didn’t even have time to think about writing this column. I told my column manager as much. But as the week settled behind me, I realized it was full of moments — some good, some not — that are…
As someone who is generally healthy and asymptomatic, I often feel like my Gaucher disease is tucked away in the back of my mind. Sometimes it creeps back in, reminding me, “Hey, I’m still here” — like when I get my infusion every other week or when my…
South-central Alaska had been acting grumpy all summer — cold, wet, and uninterested in anything resembling fun. So when I saw sunshine in the extended forecast (aka the weather app briefly stopped crying), I did what any rational Alaskan would do: I panicked, overreacted, and immediately booked a remote wilderness…
There are no vacation days when you’re a mom. If infusions once meant chilling on the couch, taking a nap, or watching my favorite TV show, today they look quite different for me. My baby, for instance, is almost 9 months old, and while we try to explain that…
Last Saturday, my 7-year-old daughter, Violet, and I volunteered with Stream Watch, an award-winning program that takes care of high-use fishing sites on Alaska’s Kenai Peninsula. Stream Watch volunteers pick up litter, collect monofilament from recycling tubes, teach visitors about ethical angling, provide natural history education, and promote bear safety.
Over the past year, our 7-year-old daughter, Violet, had 52 infusions and more than 22 additional medical appointments for her Gaucher disease. Because we live in rural Alaska, where there is no home healthcare, the infusions take place at our local hospital. For all other appointments, we travel —…
“I am a miracle,” an 8-year-old boy stated matter-of-factly. “We are all miracles. None of us was supposed to have survived this.” He showed me a chapter written about him in a book about Gaucher disease and read the first page aloud. He was an excellent reader. I glanced…
