I was raised to put my best foot forward, keep a stiff upper lip, and always keep going. My favorite Bible verse is Romans 8:28: “And we know that all things work together for good to those who love God, to those who are the called according to…
Columns
As a mom and caregiver to three sons with Duchenne muscular dystrophy (DMD), my focus is always on someone else, and I tend to slip lower and lower on the priority list. I’ve been thinking about this a lot lately. Since my oldest son, Max, 17, broke…
On the evening of March 8, I was mindlessly scrolling through my Facebook feed when I stumbled upon a public post from Singaporean Paralympic swimmer Sophie Soon, who uses a guide dog for help with her visual impairment. In the post, which has now been deleted, Soon expressed grievances with…
Nebraska does have big cities. Well, it has two big cities. And the truth is that Omaha, our largest, is smaller than places like Denver, Los Angeles, and New York. If you have not read my column before, we live in Nebraska, a rural state in the middle of…
Having just moved to Pittsburgh from rural Somerset County, Pennsylvania, one of the many things I had to attend to was finding a new primary care physician. Back in Somerset, there weren’t many choices. Around 2003, I started with a doctor who was fresh out of residency and didn’t…
Three boys with Duchenne muscular dystrophy (DMD), plus one mom, plus three clinic days equals much preparation. On Tuesday, the four of us left our home in Nebraska to drive to Denver for the boys’ neuromuscular clinic visits at Children’s Hospital Colorado. When my boys were younger, getting…
I hope my columns haven’t sounded repetitive lately. I know I’ve mentioned more than once that my oldest son with Duchenne muscular dystrophy, Max, fell and broke his leg almost four weeks ago. But I continue to learn, adjust, and come to realizations that inspire my column. In…
As I start a new adventure writing for Muscular Dystrophy News Today, I’d say the first sentence is the hardest. I’m so glad I got that out of the way! I’ve joined the team at Bionews, the parent company of this site, to share my experience dealing with…
On Feb. 18, I attended an ART:DIS event at the Singapore Art Museum (SAM) to kick off this year’s Arts and Disability Forum. It was a panel held with Project Art Works (a neurodivergent artist collective based in Hastings, England) to discuss the creative and diverse value…
Life feels a little messy right now. It feels like I have no control. As a full-time caregiver to my three sons with Duchenne muscular dystrophy (DMD) and a mother to my seven children, my days are often timed down to the minute and centered around their schedules…
Recent Posts
- Roche halts development of satralizumab for DMD bone health
- An essay on choosing hope in life with a progressive, degenerative disease
- I have new criteria for when my sons participate in DMD clinical trials
- New gene therapy for OPMD shows lasting success in small US trial
- How art fosters a sense of belonging in my life with Duchenne