When I began daydreaming about the kind of house my husband, Randy, and I would someday own, my vision included a big covered porch with a swing, a roomy yard with lots of trees, and a white picket fence. Gloria, our realtor in Fort Worth, Texas, had…
We're Not in Kansas Anymore - a Column by Helen Baldwin
A Nurse, or 3, Named Mary
My teaching career started at Brockman School in Columbia, South Carolina. Nestled in the corner of a quiet neighborhood resembling a forest, Brockman was a self-contained school for children ages 3-21 with orthopedic and multiple handicapping conditions. My assignment was the kindergarten class. Several other…
In the beginning of the COVID-19 chaos, I tried to stay informed of updated health-related warnings and recommendations. I soon waved the proverbial white flag to ward off permanent whiplash from keeping abreast of the ever-changing information. During this pandemic pandemonium, my current primary daily duty is…
Finding SMA in Unexpected Places
Not long after our third baby, Jeffrey, was diagnosed with spinal muscular atrophy (SMA), my mother received a note from her cousin, who mentioned her two granddaughters’ “muscle disease.” Having believed for years that the girls had spina bifida, we learned quickly, though not totally shockingly, that…
There’s no need to dwell on the insanity that has defined 2020, so I’m skipping right on over to this month. I think it’s August. August is SMA Awareness Month, an opportunity to flood the universe with all things SMA for 31 days. Those in the…
The Papa Tomato
Our family has some generous gardening friends. One such friend keeps us spoiled with her garden goodies regularly. She has delivered to our porch zucchini, beans, lettuce, garlic, and fresh eggs. Oh, and tomatoes. *** Our baby Jeffrey’s routine check at two months…
It’s probably safe to say that these past four months have been a blur for many. It seems that mere blinks ago it was mid-March, the last days of normalcy in untold routines, and the beginning of upheavals that have defied description. Somehow, it’s already four months…
One month after our baby Jeffrey was diagnosed with spinal muscular atrophy, I met Cindy Schaefer on an SMA message board. Her son, Bionews Services columnist and forums director Kevin Schaefer, was diagnosed with type 2 SMA a couple years before that. During our…
June 7 was my 46th wedding anniversary. My parents reached their 50th anniversary 17 years ago. It is mind-boggling that my husband, Randy, and I are already old enough to ponder our own golden celebration. I have mentioned Randy in almost every column, if not all of them.
Our son Matthew and daughter-in-law Jill handed me a Mother’s Day card in 2015 with instructions to read it aloud. I didn’t pay attention, however, so my deafening squeals left my husband, Randy, perplexed until I blurted out that we were going to be grandparents. A critical task…
Recent Posts
- The transition to adult healthcare brings both fear and gratitude
- Early nerve-muscle connection flaws set stage for SMA damage
- When fate tested our theory that things happen for a reason
- Evrysdi boosts motor function, quality of life in Asian SMA patients
- Learning to resolve conflict with friends who are also caregivers
