We're Not in Kansas Anymore - a Column by Helen Baldwin

sky, bloom, silence, feathers, timeHelen partners with Randy, her “retired” husband of 46 years, in assorted endeavors: a rental cabin, carpet dry-cleaning business, and bees — lots of bees! — and all that goes with them, namely honey and beeswax products. Her favorite role is “MomMom” to Clara and James. Originally from Texas, Helen taught kindergarteners with orthopedic and multiple disabilities after a move to Columbia, South Carolina. A few years later, Helen, Randy, and their children, Matthew and Katie, moved close to the Blue Ridge Parkway in North Carolina. In the spring of 1997, they welcomed baby Jeffrey, a big surprise harboring an even bigger one — spinal muscular atrophy. Helen’s teaching expertise was called into action until their precious little guy snagged his wings at 5-1/2 months. She wrote a book, “The Jeffrey Journey,” about their special assignment and is delighted to continue sharing in her column, “We’re Not in Kansas Anymore.”

When a nod to life’s most important work happens years later

My late mother, an accomplished pianist named JoAnn Derden, used to perform double-piano concerts with her sister, who insisted that the music — intricate, demanding classics — be memorized. Mom begrudgingly obliged. When those stressful days ended, Mom enjoyed improvising and playing two-piano music with me — no memorization…

Pondering the ‘what ifs’ in life with rare disease

I spent a small fortune on cute books for the kindergarteners I taught at Brockman School, then a self-contained public school in Columbia, South Carolina. The students, many with severe disabilities, delighted in hearing the animated voices of the stories I read to them. My own children, Matthew and…

Why I don’t share the ‘F-bomb SMA’ attitude

For years, slogans with the “F-bomb” (for a certain expletive) have expressed utter contempt for catastrophic diseases, social injustices, or whatever else riles folks up. The first such campaign I remember was about cancer. I certainly didn’t disagree with the desire to eliminate the ravages of the disease, but as…

Enjoying the Cure SMA conference without attending

Somehow we’re fast approaching June’s final days! As summer continues, plenty of memories dance in my head. Particularly eventful, to put it mildly, was 1997. Our summer that year commenced in mid-May, when our third baby, Jeffrey, arrived two weeks ahead of schedule. As my volunteering stints in the elementary…