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.”

SMA and the Big Sister

If our daughter, Katie, had arrived on her due date, I’d be writing about her birthday instead of her decision to hold off a few days — eight, to be precise, but who’s counting? I’ll tell you who was counting back then — I was.

Spreading SMA Awareness in August and Beyond

Like most families broadsided with an unexpected, rare diagnosis, my husband and I had never heard of the one attached to Jeffrey, our third baby. Spinal muscular atrophy (SMA) was completely foreign to us, so it came as another shock to learn that SMA was the…

Diagnosis Day — and the Day After

Keeping up with the calendars around here can be dizzying. One desk calendar is reserved for scheduling jobs for our small carpet-cleaning business. Reminders to do one thing or a hundred dot almost every square on another. We have a reservation book for our cabin…

Two Bright Lights: Jeffrey and Papa

I’m writing this on June 29, the 13th anniversary of my father’s death.    Remembering Dad today is impossible without including Jeffrey in my thoughts. Following his death, our family was reassured by one sign in particular that he had wasted no time in…

Sweet Dreams Are Made of This

The past two and a half years have seen a whirlwind of celebration in the world of SMA. What I consider one of the best gifts possible for families arrived on Dec. 23, 2016 when, for the first time ever, the FDA gave its approval to an SMA…

Our Ignorant Bliss Is in the Past

Our old farmhouse has one bathroom and not much square footage. In the fall of 1996, it was already a cozy fit for two adults, two kids (ages 10 and 7), and two furry mutts. Then we learned we’d be adding a newborn. Rather than fret over the…

We’re Not in Kansas Anymore

My husband and I moved into our old farmhouse in the mountains of North Carolina as 1995 wound to a close. Big-city Texans in a previous life, Randy and I were giddy at the thought of a quiet place void of traffic, crowds, mosquitoes, and oppressive summer heat.