Columns

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…

If you’ve read my last few columns, you’ll know that I’m struggling with a lot of new issues due to the progression of my facioscapulohumeral muscular dystrophy, along with joint issues from a head-on collision with a drunk driver years ago, and just getting old. As I’ve grown…

I had my annual physical last week and when the doctor told me I was in good health, it was a relief. I let out a breath I hadn’t realized I was holding. I am a mother to seven: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary,…