Columns

The first thing I tell others about myself is that my husband and I share seven children: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Being a mom is literally my favorite thing about myself. Caring for my family is my main purpose…

I returned home this past Saturday from my first time in a respite care facility, where I’d been staying for nine days. The backstory is that my wife, Wendy, and daughter, Jill, who are my primary caregivers, love to travel together. In the past, I’ve been able to manage daily…

In the last year, I have written about our family’s need for more space. Well, I have some exciting news to share. We are moving to a new house! It has been a process. We looked at houses for months. That might sound like we looked at a lot…

On July 3, I received some deeply personal news: “Lov-Able,” a short film starring my girlfriend, Amanda, and me, was selected for inclusion in AN/OTHER Film Festival in Fremantle, Australia. This disability-led event is presented by DADAA, an Australian arts organization that promotes access to culture for…

As the summer flies by, my thoughts turn to going back to school — reluctantly. As a mother of many, the end of summer is nothing new. I have seven children with my husband, Jason: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max,…

I’ve been forced to make lifestyle changes continuously because of the progression of my facioscapulohumeral muscular dystrophy (FSHD) and other health issues. But I’ve regained some independence in the past few weeks after losing some capabilities over the past six months. I have a new sit-to-stand…

I wrote last week that I have been overwhelmed this summer by the demands of being a mom and caregiver. I have seven children with my husband, Jason: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie live with…

Last month, the Purple Parade featured my story on its website. Reading my profile prompted me to reflect on why I continue speaking up about living with Duchenne muscular dystrophy (DMD) and what I hope these conversations might achieve. The Purple Parade is Singapore’s largest disability-inclusion movement,…

I have been involved with the annual Parent Project Muscular Dystrophy (PPMD) conference since 2002. Back then, the conference was attended by fewer than 50 people, almost no one living with muscular dystrophy (MD), and no representatives from pharmaceutical companies. The sessions were presented by scientists who did…

“You have your hands full.” I have heard that said hundreds of times over the past 25 years, and I hated hearing it. I always had a response ready: “Sure, but my heart is fuller,” I would say. However, I’m currently in a season of life and caregiving where…