The nature of devastation, from SMA to Helene, and a resilient spirit

How do we respond when confronted with unimaginable suffering?

by Helen Baldwin | October 16, 2024

It’s closing in on three weeks since Hurricane Helene bullied her way into North Carolina. My husband, Randy, and I live in Ashe County, in the northwestern corner of the state, about 125 miles northeast of Asheville. Thankfully, the damage we incurred from the catastrophic storm and flooding can be fixed in due time. Our lives, our old house, and access to it remain intact.

Other areas of Ashe County and several counties to the west, which endured the brunt of Helene’s wrath, won’t be fine for a long time. In numerous areas, bridges, roads, homes, businesses, farms, and entire communities were obliterated. The nearby New River raged, already swollen from a deluge of rain just before Helene’s arrival. It snatched houses, cars, and more, redistributing them at whim.

Photos and videos of the aftermath reveal apocalyptic scenes, but they don’t do justice to the extent of the damage. Heartbreaking accounts of folks being swept away or trapped under debris slides won’t end anytime soon. Many of the victims’ bodies likely won’t be recovered from this mountainous region, given the immense power of the deluge of water and the massive amount of mud and rubble. It’s impossible not to grieve for the victims’ families.

That sense of facing overwhelming devastation (of another kind) isn’t new to our family.

Embracing the unsung heroes of the SMA community

A flood of helping hands

In mid-July of 1997, our 8-week-old baby, Jeffrey, was diagnosed with SMA type 1. If Randy and I had any props left after being slammed with that, the initial prognosis of death by the age of 4 knocked them away.

My normally optimistic self took a momentary back seat to unrelenting tears. On the long ride home from the diagnosis, Randy and I pondered why we’d been chosen for such a daunting assignment. We were desperate to comprehend God’s reasoning.

At the time, the internet, of all things, proved to be a significant boost to my sanity. I quickly discovered fellow SMA families, which was a godsend, and stumbled upon information about SMA. Granted, the information I found was mostly depressing, but the connections with other families and a new best friend made up for it.

Upon learning about our plight, family, friends, and anonymous folks graciously stepped up to pay our utility bills, check on us, and pray. This “angel intervention,” as I call it, enabled us to occasionally focus on something other than the mind-boggling ramifications of our involuntary assignment.

This very thing also happened in the aftermath of Helene. In a flash, local volunteers and countless others from outside the area commenced efforts to rescue, recover, and reassure. The cleanup, an immense undertaking with no end in the foreseeable future, has relied upon strong bodies with chain saws, heavy machinery, shovels, grit, determination, and faith.

Workers wasted no time removing Sheetrock saturated with contaminated water. Utility workers from all over the country promptly joined local workers in an effort to restore power, often laboring in perilous conditions amid indescribable wreckage. Myriad supplies and free meals appeared well before the shock of it all had fully set in.

Helene displaces my usual fall funk

Fall has always been my favorite time of year, but for the past 29 years, it’s included an emotional wobble of sorts.

Drawing what was surely our final straw regarding SMA, Randy and I took Jeffrey to a pulmonologist on Oct. 6, 1997, for a consultation about a BiPAP machine and gabapentin, an experimental drug at the time that had been used for another young patient with SMA. The drive to the doctor’s office in Asheville was replete with spectacularly vibrant fall colors. That would be the last I noticed of fall that year, as the consultation turned into a nightmare within minutes when a procedure with a cough-assist machine resulted in Jeffrey — then just 5 months old — going into respiratory arrest several times, first at the doctor’s office and then in the hospital.

After that agonizing overnight hospital ordeal, we headed home, drained to the max, with zero desire to return to what actually is a beautiful tourist destination. Was a beautiful tourist destination, I should say. Decimated is how I felt during our disastrous visit to Asheville that year. The horrific events of that trip likely fueled SMA’s insidious nature, as the earthly end for our sweet little guy came just 29 days later.

This year, Helene bucked my routine. Once I was somewhat numbed to the inconceivable images, the fanatical need to help in some way squelched my usual fall funk.

Randy and our son Matthew helped clear massive tree debris in a church parking lot. We delivered supplies and volunteered in distribution centers. I made bug repellent to help workers battle the angry, displaced yellow jackets, balm to soothe battered hands, and salves to ease aches and scrapes. When gathering winter clothes to donate, I managed to part with a comfy sweater my late mother had frequently worn. It seemed like a perfect opportunity to release it, especially since today is her birthday.

The healing vibes of Angel Mountain

Over the years, our little mountain has provided respite when I needed to regroup — from our “Jeffrey journey” to Helene, and a whole lot in between. The long-range views long ago gave way to a sanctuary setting that is healing and invigorating.There have been plenty of tears, chats with God, and heartfelt appreciation for whatever it takes to tackle whatever’s coming.

I may not like what’s coming, whether it be a rare genetic killer or a massive hurricane, but I can handle it.

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.

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About the Author

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.

The nature of devastation, from SMA to Helene, and a resilient spirit