Powering Up (and Out) for Another Year

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by Helen Baldwin |

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Goodness, that didn’t take long. We’re already closing in on the middle of the first month of another new year.

For most, 2021 felt like a tedious extension of the calamitous year before it. Oh, 2020, I hope never to see a year of your ilk again.

As usual, I was hopeful about this new year, despite racking my brain to see what essentials I’d forgotten before the 2021 lights went out. Jan. 1, 2022, marked its arrival with another day of blissfully mild weather. My cranky back was agitated by hoisting our dog kids, Honey and Maple, into the tub for baths before winter weather returned that night.

power | SMA News Today | Helen's dog Honey is covered in mud after playing outside. She is standing inside on a carpeted floor, which is also covered in mud.

Honey needs a bath after a summer fun day in the mud in 2020. (Photo by Helen Baldwin)

power | SMA News Today | Helen's dog Maple sticks out her tongue while standing in the bathtub.

Maple in a bath in 2020, sorry only that she was caught. (Photo by Helen Baldwin)

The mother-in-law of our daughter, Katie, sent Ziva paperwhites at Thanksgiving. They welcomed 2022 by sporting their first pungent blooms!

power | SMA News Today | White Ziva paperwhite flowers bloom next to a window on New Year's Day.

Ziva paperwhites bloom on New Year’s Day, 2022. (Photo by Helen Baldwin)

Our first significant snowfall of the season fell on cue the night of Jan. 1, shuttering a good part of the area the next day. It wasn’t my favorite kind of snow with enormous flakes floating down, but it was pretty and peaceful when it ended, and we only lost power for a second. Folks in other parts of the county lost power for a few hours in the frigid temps, so we were lucky!

power | SMA News Today | A photo of Helen's deck and backyard, including a pond, shows everything covered in several inches of snow.

First big snowfall of the season, Jan. 1-2, 2022. (Photo by Helen Baldwin)

We were lucky, all right. It had been so mild the past couple of weeks, that even though the temperature was plunging toward 22 F, my husband, Randy, and I didn’t realize until early evening that our heater wasn’t working. We were also lucky that we had plenty of blankets and more than a few extra pounds providing much-welcomed insulation.

And we had electricity.


Experiencing 1989’s Hurricane Hugo was a thriller. Katie was only a few weeks old, and our son, Matthew, was 3 when Hugo knocked out power for almost a week in Columbia, South Carolina’s sweltering September heat. Randy, a high school football coach (who had coached a game that night!), and I spent a frightening night huddled in the compact hall of our home. We prayed all night over our little ones that the towering pines constantly bending to the brink would stop short of snapping and slicing our house — and us — in half. Matthew, wearing Randy’s old football helmet, and Katie, fitted with Matthew’s play football helmet, slept soundly inside the linen closet. They even snickered in their sleep.

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Randy and I didn’t sleep or snicker. We were, however, in awe the next morning at the magnificent crystal blue sky, which stood in stark contrast to the destruction below it. We were safe, and so were my parents, who lived nearby.

When our family moved to the mountains of North Carolina on the last day of 1995, a week before a grueling blizzard, we gleefully, albeit naively, announced that at least we were finished with hurricanes! Imagine our surprise when we learned that Hugo had actually built up steam and brutalized our new area even more than it had Columbia.

Since then, the ferocious winds — hurricane remnants on occasion — have knocked out power a number of times. And we’ve had a few small earthquakes and a couple of tornado sightings in the county.

Nothing has come close, however, to the terrifying power outage on Nov. 1, 1997.


Our third baby, Jeffrey, was diagnosed with SMA type 1 at 2 months old in the summer of 1997. By the second week of October, it was obvious that we were heading down the final stretch of our SMA assignment. Our solitary goal by then was keeping our sweet boy as comfortable as possible.

In the early morning hours of Nov. 1, the oxygenator just a few feet away began beeping. As was generally the case since SMA and its devastating prognosis upended our lives, Jeffrey was perched on a pillow in my lap in an old, comfy, overstuffed chair. With an eye and an ear on guard, I jolted fully awake to the beeping machine. Horrified, I realized our electricity was out.

No electricity meant no blow-by oxygen or oxygenator for Jeffrey. It would have meant no suction machine, either, if the backup battery had balked. Mercifully, it didn’t balk as it had three weeks earlier.

Although the power outage lasted a relatively brief time here in our rural mountain setting, the event, which included watching Jeffrey drift away in the dim emergency light, left all of us ragged.

I’d say we didn’t know what we were powered by ourselves after that, but I’m pretty sure I do know.

From the hymn “There Is Power in the Blood”:

“There is power, power, wonder-working power
In the blood of the Lamb
There is power, power, wonder-working power
In the precious blood of the Lamb.”

Wonder-working, for sure.


Did I mention our only toilet is celebrating the new year by gurgling and bubbling up after being flushed?

There’s apparently power — or something — in the plumbing, too.

Welcome, 2022. Looks like we’d better keep hanging on.


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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