In times of darkness, look for the bright spots

I consider myself an optimist, at least most of the time. Life has hurled more than a few lemons our way over the years; thankfully, I like lemonade. In 1997, when my husband, Randy, lost his job mere weeks before our third baby’s due date, I felt like we’d been pummeled with baskets of lemons. It turned out to be just a warmup.

The arrival of our sweet boy, Jeffrey, on May 18 was two weeks early. He was beautiful and the most laid-back baby I’d ever seen, simply whimpering when hungry or needing a diaper change. His abdominal breathing bothered Randy, but as it hadn’t alarmed the pediatrician or nurses at his birth, I didn’t dwell on it.

Nor would I win Mother of the Year. At Randy’s request, my physician brother, Paul, examined Jeffrey; he detected a dull lung and no reflexes. The following evening, our 8-week-old baby was diagnosed with SMA.

We’d never heard of it; however, thanks to my experience teaching students with orthopedic and multiple handicapping conditions, I remained optimistic until the neurologist revealed the devastating prognosis: Our precious baby would probably not make it to kindergarten. The tears were still gushing when the genetics counselor informed us that his life would more likely end within two years.

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Loss Is Painful, but the Gift of Friendship Is Worth It

Our involuntary assignment was fast and furious. The days were a mix of easy, challenging, excruciating — and bright. One of the brightest spots was the connection to extraordinary families and a new best friend I met solely because of this insidious disease.

SMA provided us with a crash course in the power of faith, prayer, resilience, and appreciating blessings in the midst of despair. While watching your baby die isn’t for the faint of heart, it remains an honor to believe that God thought we were up to the task.

Jeffrey’s earthly life didn’t last even six months, but the impact he made? Still going strong.

Hurricane Helene: Devastation and bright spots

In late September, rain fell steadily for two days in western North Carolina. On the third day, Helene, a Mother Nature superpower, built up unexpected, incomprehensible muscle as it hit the mountains, thrashing the already rain-soaked area until it was unrecognizable. The hurricane extraordinaire redistributed and obliterated houses, cars, bridges, roads, people, pets, and trees. Debris slides — a deadly mix of trees, mud, rocks, and anything else in the path — buried entire communities in a blink.

Helene’s decimation included knocking out power, contaminating the water (for those who had water), and displacing thousands of folks. And yet the bright spots appeared like clockwork in this surreal new reality. When possible, those in affected areas sprang into action immediately to check on neighbors. Within hours, earth angels in the form of outside volunteers from all over arrived with myriad necessities. They rescued stranded survivors, ripped out Sheetrock, shoveled muck, cleared paths, rebuilt roads and bridges, provided meals for everyone, rejuvenated others with smiles and hugs, and so much more.

Our county (Ashe), on the western edge of North Carolina, was a mixed bag of destruction. Randy and I were fortunate; on our property, massive trees snapped like toothpicks but miraculously missed anything deemed important.

Other sections of our county didn’t fare so well. The nearby New River escaped its banks in mind-boggling fashion, ferrying campers, outbuildings, and more to parts unknown. The beloved, quaint town of Lansing flooded completely. In many areas of the county, bridges vanished and roads broke away. For some, power was out for weeks. At least one person in our county was swept away.

Despite the unthinkable havoc wreaked by Helene, the generous, optimistic spirit of the Appalachian people has prevailed in the recovery efforts. Some of the recovery and rebuilding will take years. I’m banking on the bright spots to persevere.

Like SMA, Helene sparks new friendships

A few weeks ago, Bionews, the parent company of SMA News Today, announced matching donations for anyone affected by Helene. I didn’t feel significantly affected and didn’t know anyone else who was. I figured funds would be sent to a nonprofit, deeming it a generous gesture by a warmhearted organization.

That was a day after Shalana Jordan, a Bionews columnist for aHUS News, posted that she’d lost both parents in the flooding of Swannanoa, one of the areas in North Carolina that Helene battered particularly mercilessly.

Immediately after reading her column, I felt a connection to Shalana, saddened by her immense loss but thankful for her sake (and the rest of her family’s) that the bodies of both her parents had been recovered — nothing short of a miracle. After exchanging several messages with Shay, as I’ve come to know her, I considered her a new friend, one I wouldn’t have met had it not been for this inexplicable tragedy.

Hmmm. Sounds more than a little like one of the biggest blessings stemming from our crushing SMA assignment.

Both literally and figuratively, brightness is best noticed in the midst of darkness — like, perhaps, a twinkling star.

Or a new friend.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.