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.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.
Our third baby, Jeffrey, was diagnosed with spinal muscular atrophy (SMA) on a midsummer evening in 1997. The referral to a pediatric neurologist came that morning during what was to have been his 2-month “well” checkup. Oh, the irony. Not only was our beautiful baby not well,…
I’ve been in awe of spectacular night skies for as long as I can remember. When our family moved to the mountains of North Carolina (close to the stunning Blue Ridge Parkway) at the end of 1995, we realized that we were privy to the magical…
Our third baby, Jeffrey, shook things up from the moment the nurse at the doctor’s office exclaimed, “You’re pregnant! You’re very pregnant!” She seemed exceptionally delighted to announce the confirmation. Although my husband, Randy, and I were shocked at the news of having a newborn in middle age, there…
Life is typically made up of occasional, seemingly random thuds. Thuds are moments when we sit up and take notice. We don’t usually know what we’re noticing, but there is no mistake that thuds are significant. The first thud, as it relates to this story, occurred when my…
The month of November kicked off eventfully in 1997 in the wee hours of the morning when our electricity went out. Jeffrey, our 5 ½-month-old baby with spinal muscular atrophy (SMA), relied on blow-by oxygen and an oxygenator for comfort, and the power outage rendered both useless.
The excitement of baby news for novice grandparents rivals that of the soon-to-be parents. Giddiness pervades the pondering. Who will the baby look like? What strengths and interests will the little one inherit: academics, arts, sports, creative thinking … common sense? Names, nursery decor, baby projects, and pregnancy updates…
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