Processing guilt over both Hurricane Helene and SMA
Incredibly, October is almost history. A month ago, our mountain county and others west of us here in North Carolina were left reeling from the surreal aftermath of Hurricane Helene, considered a once-in-a-thousand-year storm.
Out of the proverbial ashes of incomprehensible destruction and heartbreak have risen untold examples of the extraordinary human spirit, when folks come together despite — or perhaps because of — circumstances that are impossible to fathom.
Inspired by the ruins where houses, trees, and people stood just hours before Helene’s arrival is a list of descriptors surpassing devastation in both frequency and strength: grit, tenacity, gratitude, faith, kindness, resilience, appreciation, generosity, prayer, resourcefulness, courage, community, unconditional love, and God.
There’s another word that describes what many are grappling with: guilt. Although Helene’s wrath wiped out our power and cellphone service, my husband, Randy, and I didn’t need news reports to know we’d escaped relatively unscathed. Our old farmhouse leaked but was still standing, and what we could see of the barn looked intact. We learned later that our cabin, bee hives, the site honoring our late baby, Jeffrey, and the old cemetery on top of our little mountain were fine. Considering the towering trees surrounding us, and other massive ones that snapped off, that was a miracle.
We eventually saw images of Helene’s impact on other parts of Ashe County and the other counties that endured the brunt of the storm. The more we saw, the more horrified, thankful, and guilty we felt. The guilt continues fueling our desire to help others however we can.
When the temperature plummeted recently and our heater refused to cooperate, I thought of the people who are still without power or living in tents as the weather shifts to winter.
Additionally, many folks in Helene’s path will depend on others indefinitely for uncontaminated water. So when I discovered this past weekend that we had no water, and we’d be without it for several days, I barely flinched. It also eased the guilt some.
Feeling guilty about having a healthy baby
In 1985, I landed a teaching job at what was then the Brockman School, a self-contained school in Columbia, South Carolina, for students with orthopedic and other disabilities. My assignment was the kindergarten class. The diagnoses and academic abilities varied widely, but the students were all delightful.
Randy and I welcomed our first baby, Matthew, the summer after my first year at Brockman. I’d had an easy pregnancy, and despite being surrounded by children with all types of diagnoses, I didn’t worry that our baby would have any problems.
A typical new mama, I loved talking about our beautiful, perfect baby! When the first parent of a Brockman student asked about him, though, I realized that I struggled with guilt that our baby was healthy. It helped considerably that I was occasionally able to bring Matthew to my class when he was a preschooler. He loved visiting his new friends as much as they loved having him.
Our second baby, Katie, was born three summers later, and once again, there was no doubt that she would be perfect. And she was! By then, I felt comfortable sharing stories, and I also took baby Katie to school a few times. The class I had that year included three beautiful little girls who doted on her.
Randy and I deemed our family complete. But God had other plans.
An SMA diagnosis and more guilt
Our surprise third baby, Jeffrey, arrived several years later, in 1997. At 2 months old, he was diagnosed with spinal muscular atrophy (SMA). It was the prognosis at the time — likely death by age 4 — that instantly set off my guilt meter. At 43, was my age a factor? Thankfully, the neurologist said no, so my mind instinctively shifted to anything I could have done differently.
But the gravity of our assignment left no room for guilt or self-pity. Randy and I spent the next few months scrambling to unearth any kind of undiscovered regimen that might thwart SMA’s devastation. Through the connections I made online with fellow SMA parents, I noticed that the families demonstrated what I’ve witnessed after Helene: tenacity, faith, kindness, resilience, generosity, resourcefulness, courage, unconditional love, and community.
Yet the guilt I had experienced returned. This time, it wasn’t because of anything I thought I’d done; it was because our assignment ended when Jeffrey passed away shortly thereafter.
Guilt … and no guilt
SMA isn’t an easy ride. We had plenty of harrowing episodes with Jeffrey during our brief stint with him. However, while words are completely inadequate in describing the loss of a child, I’m confident and relieved that he’s forever safe and healthy in the perfect place.
So when I hear about the struggles other SMA families face with respect to medical crises, equipment or nursing woes, education, and on and on, the glimmers of guilt make a little more noise because Randy and I don’t have to worry about those things. Obviously, though, the reason for that is Jeffrey’s death.
We would certainly have done whatever it took had Jeffrey’s earthly stay been longer, but that apparently wasn’t God’s plan.
And for that, I don’t feel guilty.
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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