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.

Nothing.

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.

Every snowfall, every sleet-storm, every freezing rain, our driveway is a journey into the unknown, just as our life has been since we had our first experience with a genetic diagnosis.

This year marks our twentieth in our current house, located on a cul-de-sac in a quiet suburban neighborhood. There are four houses around the circle, but ours is the one where the sun never climbs more than a third of the way up the driveway. One-in-four odds, I guess. (As compared with the odds of having a child with our daughter’s condition, a microscopic number.)

In winter, the first sunny day melts the wintry mix in each of our neighbors’ yards, while we still have a slick for days. If it was just us, we would take it in stride: we’d tromp down through the snowdrifts on the lawn or take our chances on the driveway.

But it’s not just us.

Once when she was young, I scooped up some snow to place in her hands. After a brief show of dismay, she did what she does with stuffed animals and other toys handed to her: she tossed it on the floor, indifferent.

We cannot be indifferent to the snow.

To reach the bus to transport her to her day program (and before that to school), we need to get her wheelchair to the bottom of the slope. And from November on each year, we no longer know what’ll come with every passing week.

Thus far this year we’ve had eight inches of fluffy snowflakes, one inch of sleet, three inches of wet snow, etc. And if it’s anything less than four inches, I never know just how to attack it. Do I shovel it away and take the chance that the remnants freeze? Do I put something down hoping the ice will melt?

Recently, a few inches left a layer of snow that provided enough traction to ease her down the driveway, although every time we took out the car or walked to the mailbox, the snow packed down and came one step closer to ice. The first day, even though her program was operating on a delayed opening, we had to keep Gabriella home. Her nurse arrived to dress her, but when she fitted her feet with indoor booties rather than her shoes, the truth became clear and our daughter’s face crumpled.

The next day, we resolved to get her to the bus. Lisa has been doing this for years while I commuted to work, and long ago she bought cleats that fit onto the soles of her sneakers. With those, she walked her gingerly down the perimeter of the driveway, while I put on snow-boots and worked my way through the drifts. Both of us held the wheelchair steady. It took quite a while to travel the short distance to the cul-de-sac, but we made it. One afternoon last week, when Gabriella arrived home from school, I was able to gain traction for myself but labored to heave the chair up through the driveway, sliding about in the inch of snow, until her nurse pushed me like a lineman shoving a running back an extra few yards.

My first winter since retirement has been enlightening, yet another way I realize that my wife has been flying solo against the unknown all these years. We have tried many things over time, from salt that broke down the surface to a coir mat that was intended to provide traction but only slid when we tested it. (Stating the obvious, we don’t dare expose Gabriella in her chair to any solution without trying it out.) When we had our drive resurfaced a while back, we asked the contractor about installing a heating system beneath the new covering, but he dissuaded us, saying such systems didn’t really work. Sometimes we wonder whether that would have been better than nothing.

I’m a bit ashamed to admit that I have become more attuned to the problem now that I’m home most weekdays, but it’s true. There’s nothing like experience. And so we will continue to look for new solutions.

In the end, though, every winter week offers a fresh helping of the unknown. It’s been that way since we’ve moved here twenty years ago, right around the same time that our genetic diagnosis began to unravel.

I’ll have more on that next week…