Columns

“Sticks and stones may break my bones, but words can never hurt me.” I don’t know if this adage has retained its clout from my early school days, but surely it’s still familiar. It came in handy — sorta — when I was in elementary school. During a routine…

Late last year, I embarked on an unexpected journey to self-discovery. The past several years had been an uphill battle with my health, each day bringing its own relentless fight. The good news was that I was surviving whatever conditions came my way. The bad news was that…

Those of us who live with a disability that severely limits our motor skills find ourselves continually depending on others for assistance. In addition to essential daily tasks, we need assistance with seemingly mundane activities like painting one’s nails or trimming a beard. We rely on family members or…

When you’re living with SMA, you quickly learn that you cannot function without someone else’s help. One of my earliest memories is of a nurse telling me that she’d asked doctors to remove my nasogastric tube for me. I must’ve been 3 at the time. My parents…

On a rainy day in April, I write the final words of my third novel: “The End.” If you follow me on social media, you’ll know this book has not been without its hiccups. I won’t get into the nitty-gritty of it, largely because I chronicled everything on…

The other night, I asked my husband, Randy, if he’d like to watch a movie. Although I was in the mood for some Denzel Washington action, another of his flicks caught my eye. I wasn’t familiar with “The Little Things,” from 2021, but it had a stellar…

Taylor Swift, the light of my life, the one artist who’s gotten me through all my toughest eras, once wrote: “So make the friendship bracelets/ Take the moment and taste it/ You’ve got no reason to be afraid.” I took that advice last month. Well, except…

Serious side effects that can cause or prolong hospital stays occurred frequently among children with spinal muscular atrophy (SMA) who are receiving treatment with the gene therapy Zolgensma (onasemnogene abeparvovec-xioi), a new study of real-world safety data highlights. Specifically, according to the researchers, more than half of…

When I was a little girl, I loved searching for dandelions at the first sign of spring. My mother would pick one off the ground for me, and I’d excitedly use all my strength and breath to remove the fluffy seed ball, or blowball, from the stem. One by…

Maybe you’ve noticed from my past columns that my family enjoys traveling. We’ve been blessed to visit a variety of destinations together, but we’re repeatedly drawn to locations with scenic coastlines and warm climates. My mom books all of our family trips. With a lifetime…