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…
We’re Not in Kansas Anymore
— Helen Baldwin
Helen 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.”
Featured Post
A Barbra Streisand concert unleashes a flood of memories
As I tallied the sea of tiny numbers on my tax spreadsheets, I decided to search for some background music on my computer. I love my computer — a gift from my generous family in 2020 —…
Read more
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…
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…
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…
From SMA to BWS: Clara’s Diagnosis Was Unexpected
We had no reason to doubt that our third baby, Jeffrey, would be healthy. Our other children, Matthew and Katie, were in good health, and any known “premature” deaths in our families were attributed to miscarriage.
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…
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…
Forget You Not: Keeping Jeffrey’s Memory Alive by Starting a New Chapter
When our children, Matthew and Katie, were in elementary school, I volunteered regularly in their classrooms. As a former educator, I knew that no sane teacher would turn down an extra set of experienced hands. I chaperoned…
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…
Your SMA Community
Visit the SMA News Today forums to connect with others in the SMA community.
