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

sky, bloom, silence, feathers, timeHelen Baldwin lives in Jefferson, North Carolina, with her husband, Randy plus their two dogs, a cat, and untold wild critters outside. Their firstborn’s family, including two delightful children, lives just down the road, so she enjoys lots of MomMom time. Helen and Randy have a rental cabin and bees, among numerous other endeavors, so they’ll never be bored. Life took a drastic twist in 1997 when their third baby, Jeffrey, was diagnosed with SMA type 1. Although their active stint with SMA was brief, Helen hopes that sharing and connecting experiences after Jeffrey’s death, usually with optimism, helps others endure the unpredictability of loss and recovery.

SMA, Beckwith-Wiedemann syndrome, and a happy ending

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…

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…

Fall’s emotional tug hasn’t changed much in 26 years

It’s officially fall in the U.S.! The weather here in the North Carolina mountains has been stupendous. I could almost hear our assorted fans breathe a collective sigh of relief when we finally turned them off at times and even closed some windows at night to keep from rousing the…

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…