Memories of SMA diagnosis day, 28 years later
My brother’s birthday was July 13. While we generally aren’t able to get together to celebrate, we managed to do so in 1997. Paul’s birthday fell on a Sunday back then, too. At the…
We’re Not in Kansas Anymore
— Helen Baldwin
Helen 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.
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Amid the chaos, spring’s transformation brings hope
My husband, Randy, and I had our first baby while I was teaching students with a variety of difficult diagnoses. Our son, Matthew, was followed three summers later by our daughter, Katie. During both…
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What I would tell my 13-year-old self
My late mother, who was musically gifted, fostered an appreciation of quality music in our family. I took enough piano lessons from her to serve as her other half in a two-piano duo that…
When SMA, allergic reaction blisters, and EB (sort of) connect
On the afternoon of July 7, 1997, a sickening thud and screams hailed from the front yard. Our older children, Matthew, 10, and Katie, 7, had been playing with our two dogs when one…
The advantage of finding the good in everything, no matter what
My mother dubbed me a Pollyanna many years ago. I loved the 1960 movie “Pollyanna,” but don’t remember if I identified with the orphaned character’s perpetual, cheery optimism or merely adored Hayley Mills, the…
Sharing special May birthdays with a new fellow columnist
In May 1997, my husband, Randy, and I awaited the arrival of our third baby. The ultrasound indicated we were having a boy. We named him Jeffrey. Years before, I’d taught at…
How being prepared became more than a Girl Scout motto
Starting with Brownies in second grade, my stint in the Girl Scouts lasted five years. The Girl Scouts’ motto is “Be prepared.” As the firstborn, Taurus child of teacher parents, that came…
Thinking outside the box is necessary in life with SMA
Years ago, I taught kindergarten at a self-contained school for students with orthopedic and other disabilities. My charges were animated, and my assistant was delightful. At the end of my fifth year, my students…
The towering pine that stands watch over Jeffrey’s resting spot
The revelation that my husband, Randy, and I were becoming newborn parents again called for a comprehensive to-do list. Our other children, Matthew and Katie, were in elementary school. With no intention of…
The journey that led to an incredible rare disease community
In September 1995, my parents began running the family’s newly acquired lodge on the stunning Blue Ridge Parkway. My husband, Randy, our two children, Matthew and Katie, and I lived about an hour away…
The SMA community today is marked by progress, hope, and loss
My husband, Randy, and I moved our family to the North Carolina mountains in the final hours of 1995. Adventures in our old farmhouse commenced immediately. We considered a newsworthy blizzard and the escape…
With our SMA assignment, glasses didn’t help me to see clearly
I learned my vision needed assistance in fifth grade. Although I unwittingly squinted at the chalkboard, my report cards never indicated a problem. I was a model student because I adored my teacher, Mrs.
