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.”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…
I’m a May baby (actually, May senior citizen is a bit more accurate). I love having a May birthday. From wrapping up spring semesters before my birthday way back in college, to getting back to outdoor activities after winter confinement, and to my birthday falling on the heels of…
I didn’t intend to write another column about The Virus, at least not right after my last one, but it seemed appropriate to share a surprising revelation from after my baby was diagnosed with the deadliest form of spinal muscular atrophy. My husband,…
It seems fitting to address the current whammy threatening every single person on the planet. It’s unfortunate that it’s a menacing global health upheaval bringing us together in myriad ways. On the other hand, maybe that’s what it’s taken to counter the relentless political squabbling and divisiveness.
It’s daylight saving time and we have given back the extra hour we snagged in the fall. I don’t like giving time back. Usually. Ahhh … time. It’s a given that when you’re having fun, time whizzes by. My six weeks studying in Europe after high school?…
The first Rare Disease Day was celebrated in Europe in 2008. The United States participated the following year, and by 2019 more than 100 countries had joined in to highlight rare diseases. The special acknowledgment falls annually on the last day of February. This year, that’s the…
My first experience with the death of someone close to me came shortly after my 16th birthday. A good friend since elementary school, Candy had moved to another state with her parents and younger sister during high school. They returned to Fort Worth, Texas, in early June for…
After the delivery of our baby Jeffrey, I failed to notice his abdominal breathing. My husband, Randy, possessed both an eagle eye and the presence of mind to ask the doctor and nurses about it. No one on duty seemed concerned, perhaps because Jeffrey had arrived two weeks early.
