On Friday we, like many households across the Northeast, lost power. As with each outage we’ve experienced in the past, this brought us an extra level of apprehension.

A blackout is an inconvenience for us the same as anyone else, and no less in the winter when the heat goes out. Gabriella’s extremities are always cold, but swaddling her with blankets is enough to keep her warm. We also stress when the weather limits our ability to drive, especially with the uncertainties we face on our driveway, in case we need to take her to the emergency room, even though it’s been years since we’ve had a crisis. (I’m crossing my fingers right now.) But the main reason for our anxiety during a power failure is that most of our daughter’s medical equipment runs on electricity.

So with every report of a coming storm, the threat of an outage looms in our minds.

The nor’easter hit central New Jersey on Friday morning. The wind thrashed the tree limbs but despite forecasts of wintry mix, at first we saw only rain.

Lisa’s mom, who lives a mile away, lost her electric service after 2 p.m. By then, the snow had started. Since the outage seemed localized to her development, we offered to pick her up and bring her to our house, but she chose to stay where she was. We had a couple brown-outs soon after, one long enough to set the alarm clock’s digital display blinking on 12:00, but each time the power came back within seconds.

Those flickers brought back memories of past storms. I thought about our hulking generator, unemployed in our garage for the last five years, and I wondered if I’d remember how to get it running. And if it would start if I did.

I remembered Hurricane Irene, remembered our relief when the torrential winds and rains ended. Our electric had withstood the onslaught, and while we had lost a tree, we suffered little other damage. Until a lesser storm followed several days later and, ironically, our blackout came then. This was our first outage after installing Gabriella’s new equipment, and we were still getting used to the routines. We didn’t know what we would do without power.

We were also sleep-deprived. Our sump pump had failed, and Lisa and Alexander and I practiced our teamwork with a bucket-brigade exercise every two hours until the rains stopped the next day. We were considering booking a hotel in Pennsylvania when we found ourselves blessed with unexpected luck, as we have so many times since Gabriella’s birth. We located a generator.

To our relief, the dealer we contacted was limiting sales to customers who needed to power medical equipment. We brought it home and set it up. Soon we heard a loud humming sound and connected several green electrical cords that snaked through our rear windows to critical outlets in our daughter’s room and elsewhere.

Within a few hours, the power returned. But now we were well prepared for the next outage.

It came fourteen months later. When Hurricane Sandy hit, we were lucky to lose only power, with so many others suffering heavy damage. With newfound confidence, I rolled our barely used generator around to the back yard, got it situated just right, and pulled the cord.


I pulled again. It sat there, defiant.

We called our electrician and explained the situation, and he came right over, but he couldn’t start it either. Then we experienced once more the kindness of others. He had a generator he had been ready to loan to another family, but he chose instead to give it to us. “They just want it to watch television,” he confided. I felt a little self-conscious, the way I do when a cast member at Disney World offers to bring Gabriella to the front of a line of children waiting to see Minnie Mouse or Belle, but I accepted. That loaner generator held out until we could get ours repaired, and the combination saw us through the six-day outage. And we became loyal customers for life.

When the lights dimmed and went out this past Friday afternoon, I felt a certain panic. I hadn’t tested the generator in years. Would my neglect doom us to another failure?

I filled a five-gallon container with gas. By candlelight, I reacquainted myself with the directions for the generator. And I waited.

Dusk fell. Lisa and I busied ourselves, considering our options. Gabriella’s nebulizer and Infiniti feeding pump and pulse oximeter are each equipped with a battery back-up, and with her lungs sounding clear we were willing to skip one breathing treatment. We bundled her up against the increasing cold and set up the batteries. Before nine, my mother-in-law’s heat went on, which gave us new hope. We resolved to wait until daylight and use the generator then if it was still necessary.

At one point, we detected a pleasant aroma in her room. “What was that?” Lisa asked. I told her it was the smell of impending light. We kindled that optimism until after 10 p.m. That was when the lights blazed forth. Fortunate once again, we were able to get back to our everyday life.

The generator continues to wait in the back of the garage. Maybe I’ll test it one of these days.