I’ve often written about learning to live alongside uncertainty. Duchenne muscular dystrophy has a way of quietly shaping plans, then loudly interrupting them. Last July, that disruption arrived as burnout during rehearsals for my graduating showcase at BEYOND DIS:PLAY, a performing arts training program in Singapore for disabled…
Columns
January doesn’t just bring a new calendar year. For four of us in this family, it’s when we celebrate our birthdays. A new year of life! I live in Nebraska with my husband and six of the seven children we share. My daughter, Lexi, 24, lives in another town…
I’d like to share my thoughts on what the word “strength” means. The United States has had one president who used a wheelchair: Franklin D. Roosevelt. During his time in the political spotlight, he did his best to conceal his disability. Many believe he did this to project…
I love my house and the home life my husband, Jason, and I have created. My family lives in a four-bedroom, two-bath, finished-basement, ranch-style home in south-central Nebraska. It was brand-new when we bought it, and we were its first owners. Jason and I had been living in a small…
In the book “Good Enough: 40ish Devotionals for a Life of Imperfection,” authors Kate Bowler and Jessica Richie write, “Blessed are you who are buried. You who feel stuck in the depths of grief and despair or who sit in the pit of unknowing.” Since reading this devotional,…
The end of the year offered up two beautiful weeks with my family and very few responsibilities. We canceled pool therapy, had no medical appointments, the kids were out of school, and I took a break from writing. We spent 10 days at home, just us. It was exactly what…
Jan. 8 marks four years since my family welcomed my animal companion, Pandan, into our home to foster. Since the new year began, I have been reflecting on how such companionship enters our lives quietly and unexpectedly, and without ceremony. Pandan is a rescued street dog, known locally as a…
I’m feeling funny today — humorous, in fact. Brimming with sarcasm and a splash of laughter, today feels like a cocktail, served over ice and garnished with a tiny umbrella and an extra-long, twisty straw. The main ingredient? Wit, with a dash of mischief. Why? Why not. Every so often,…
This column has followed me through a year that has asked a lot of my body and my heart. Looking back at what I’ve penned this year, 2025 reads like a bittersweet journal of my relationship with Duchenne muscular dystrophy (DMD), one where grief, growth, pride, and fatigue all…
Advent is the beginning of the church year for Christians. What better way to start the year than with a season of hope? During Advent, Christians prepare for the coming of Jesus, whom we believe is the incarnation of God. He entered our world, becoming human, when he was born…
Recent Posts
- MDA 2026: Dyne therapy boosts strength, cognition in DM1
- MDA 2026: Duvyzat shows DMD benefits even at lower dose levels
- Finding time for some quiet thoughts amid the travel and doctor visits
- MDA 2026: SGT-003 gene therapy shows early promise for DMD in trial
- MDA 2026: Early trial of PGN-EDODM1 shows biomarker activity in DM1