I walked home from school today. I’m almost 45 years old, yet today, with my backpack on, my empty lunch container stuffed inside, and a sweater tied around my waist, I walked home from school. As I pondered whether I was overthinking that image, my daughter Mary, 9, who goes…
Columns
My life has recently been a whirlwind of activity. Now that the dust is finally settling, I’ve taken advantage of the relative quiet to take inventory of my family. An inventory of my family? What does that even mean? I have a large family. Inventory is how I describe keeping…
My wife, Wendy, and I recently enjoyed a beach vacation in North Carolina with our family. That included our three children, Nicole, Jill, and Ryan, as well as their partners and our three grandkids, Iva, Julia, and Theo. Hurricane Debby moved out the day we moved in, and Tropical Storm…
My past two columns highlighted significant life events: my daughter’s wedding and my return to the workforce. I’m keeping that theme going today as well, noting my oldest son’s move into his college dorm! Having children leave to experience lives of their own, outside the home you’ve…
Earlier this month, I attended the debut of Stephanie Esther Fam’s play “Absence” at Singapore’s Gateway Theatre Black Box. Fam, a leading Singaporean poet and playwright in disability-led theater, is also a close friend of mine. Although I had known of her work for some time, we…
Roughly four decades into living with limb-girdle muscular dystrophy, I’ve developed numerous ways to thrive. Like many others, I believe in the power of a positive attitude. I try my best to project a positive outlook when communicating with others, whether it’s face to face or by…
I have seven children, and three of them are living with Duchenne muscular dystrophy (DMD): Max, 18, Rowen, 15, and Charlie, 13. If you’re a caregiver or a parent, I’m sure you’ll understand how tired I am. I won’t peruse my past columns, but I’m sure…
Kevin Schaefer, the associate director of community content at Bionews, the parent company of this website, recently shared a thought-provoking article from Psychology Today titled “How Chronic Illness and Masculinity Intersect.” It has me thinking about what kind of man I am and want to be. The…
I’m officially a mother-in-law! That’s a new title for me. I’m a mom to the seven children I share with my husband, Jason. I’m also a special needs mom and warrior mama to my three sons living with Duchenne muscular dystrophy (DMD). And now I’m also a mother-in-law…
Starting last week, I’ve been trying to get my life back on track after enduring a few difficult months. As I recently shared, life has been challenging since I left my job in April. Then, in May, I faced an unexpected hospitalization, and June brought relationship tension. In July,…
Recent Posts
- 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
- As my FSHD progression worsens, I’m battling feelings of shame