I used to have this bracelet I loved. My dad bought it for me on a whim on my 16th birthday. We were walking through a high-end department store where he spotted a Swarovski counter. He immediately went up to the salesperson and said, “I want to find something for…
Columns
When I was in Washington, D.C., last October for a Cure SMA advocacy conference, I used the Metro station to get to and from the city’s Capitol building. I hadn’t taken a train or subway in years, and my blatant lack of direction as I fumbled through the…
When I chose my theme for 2024, I didn’t expect to take it for a spin before the year even started. Every December, I start thinking about a word or phrase that will guide me through the next 12 months. I usually pick a theme and stick with it, but…
This may be an unpopular opinion, but I don’t buy into the hype of New Year’s resolutions anymore. For years, I would set goals and articulate my intentions. I made vision boards. I followed the traditions that come at the start of each new year. However, with introspection and…
If I could go back in time a year, to Dec. 31, 2022, and retain what I know now, I’d be so excited about the people who would come into my life in 2023. I’m referring to my new nurses, who have been providing me great care. As I…
The first surprise our third baby, Jeffrey, delivered was his mere appearance. In 1997, my husband, Randy, and I juggled two school-age children and their respective activities, his new job, and a bustling family lodge. A baby was nowhere on the to-do list. Surprise No. 2 was Jeffrey’s arrival two…
As Mom and I browsed the bookstore searching for gifts and travel guides for our summer vacation destination, we amused ourselves with the wide selection of books on offer, most of which we would have gladly purchased. Among the myriad titles and genres, we noticed one topic…
The film “Everything Everywhere All at Once” features parallel universes, sprawling action sequences, and images involving hot dogs that viewers will never forget. It’s a highly cinematic, cross-genre epic. But at its core, it’s a movie about family and relationships. The film’s two central characters are a mother…
This column describes the author’s own experiences with Spinraza (nusinersen). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When trying to decide on a topic for this week’s column, my procrastination got the best of me, as it usually…
Secretly, I usually dread this time of year. To borrow from singer-songwriter Sara Bareilles, December is, to me, a “problem child.” It’s not easy to exist inside of this contradictory month, a time of both celebration and solemnity, of looking backward and forward. My birthday and…
