“Kidney stones!” my 13-year-old son, Charlie, exclaimed when I asked him what I should write about this week. My husband, Jason, and I have seven children: Lexi, 23; Max, 19; Chance, 17; Rowen, 15; Charlie, Mary, 10; and Callie, 2. Max, Rowen, and Charlie have Duchenne muscular dystrophy (DMD).
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People living with a chronic illness, including me, commonly explore how we deal with grief, which is the subject of much theory and research. I’ve thought deeply about how living with limb-girdle muscular dystrophy (LGMD) can be seen through the familiar Kübler-Ross model of the grief cycle, with its…
I have three teenage sons — Max, 18, Rowen, 15, and Charlie, 13 — who have Duchenne muscular dystrophy (DMD). They have met several sweet milestones over the years, and I love celebrating them. I’ve always made a big deal about birthdays, for instance, as well as decorating the…
I’m currently continuing to do the exercises my physical therapist recommended during my last therapy session. However, it hasn’t been stopping the progression of my facioscapulohumeral muscular dystrophy (FSHD). While I’m hoping the exercises are slowing the progression down, it seems like it gets harder every day for me…
Three weeks ago, my girlfriend, Amanda, and I embarked on a unique journey by co-founding Rebirth Ensemble (RE), an art-making business with a distinct purpose. This partnership is deeply rooted in our shared passion for visual art, which has been a source of joy but also a progressively tricky challenge…
The seasons are changing in central Nebraska. The leaves have turned yellow and orange, a beautiful contrast littered across the green lawns and familiar streets surrounding my home. The mornings are brisk, and I’ve finally pulled out my warmer sweaters and fuzzy socks. I’ve been drinking pumpkin spice coffee for weeks!…
Idlewild, which is near Ligonier, Pennsylvania, is an old-style amusement park that’s been around since the days when the gentry from Pittsburgh took the train to their summer homes in the foothills of the Laurel Highlands. It’s a wonderful park for all ages, but it’s absolutely perfect for…
I’m a mom to seven children: Lexi, 23; Max, 18; Chance, 17; Rowen, 15; Charlie, 13; Mary, 10; and Callie, 2. As part of that job, I’m also a caregiver to Max, Rowen, and Charlie, who all have Duchenne muscular dystrophy (DMD). Additionally, I’m a chronic DIYer (do-it-yourselfer). Yes,…
Since September, my life has moved in an exciting new direction, starting with becoming a marketing communications assistant at Shalom Medcare (SMC), a medical transport company here in Singapore. In case you’re wondering, yes, I realize it’s amusing that the company and I share the name “Shalom” — something…
Like me, my colleagues here at Bionews, the parent company of this website, write about their lives with chronic illness. In our columns, “we make a promise to our rare disease communities to deliver trustworthy information to help educate, engage, and champion the patient voice.” These words appear on the…
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