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.

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…