The feeling lurks within like a sleeping beast. It’s not so much a spike of fear as a lingering dread, ready to be roused at any moment. By a phone call, a blurring over the eyes, a bump on the scalp. Or a retching cough.

We had settled into a routine. Those first few years – the dehydration, the cataract and clubfoot surgeries, the cancer scare – had indoctrinated us into a life of constant anxiety. A decade later, our daughter’s spinal fusion surgery had exploded any sense of normalcy. Now came the reign of tedium.

Lisa bore most of the burden, the hurry-up-and-wait activities of doctor visits and lab tests and billing questions. I worked. Gabriella went with delight to Lakeview School, and we tried not to dwell on the pace of her development. Or on the fact that her IEPs (the educational plans documenting her goals and her progress), hardly changed from year to year. Her health was stable, our primary concern.

But there were worrying signs.

For one, in September 2005 she weighed 57 pounds. Her height was already in the fifth percentile for eleven-year-olds, and her scoliosis surgery that month effectively stunted any further growth. The awful complications following that procedure weakened her and over the ensuing year, she dropped ten more pounds. The low point for me was looking at a photograph taken on the beach with her brother and cousins, finding that her arms and legs looked skeletal. It took another twenty-four months for her to regain what she had lost since the operation. After that, she plateaued between 55 and 60 for two more years.

One reason was that Gabriella remained a picky eater. I had reasonable luck in feeding her on the weekends, but it was still a struggle to get down a couple jars of baby food and a dish of applesauce. Before the scoliosis procedure she had begun using a customized curved spoon, laboring to control it to her mouth and needing lots of help, but finding pleasure in the act itself. She also toyed with drinking thickened juice from a cup, lifting the two-handled vessel to sip; this was important because she drank little water except when squirted between her lips with a syringe. But these burgeoning skills were among the things she lost when they straightened her back, never to return. We resumed holding the spoon ourselves.

She ate pureed food, and Lisa put meat or vegetables in the blender to vary her flavors, but sometimes she would choke, unable to process anything but the bland mush in the Gerber and Beechnut jars. Too much coughing interrupted a meal and often signaled its end. We heard similar frustrations from her teachers and speech therapists at school.

The coughs weren’t limited to mealtime. Our daughter became prone to respiratory infections, often succumbing around her birthday in late November. More than once, we spent Thanksgiving at home, trying to get her fever down, to ease her discomfort, to keep her from gagging herself into vomiting. She contracted bronchitis a few times, and pneumonia several more, always in her undersized right lung.

The confluence of these symptoms – her flatlined weight, her limited water intake, her frequent coughing and her respiratory setbacks – worried Lisa. It was a busy time at my job, and she took our daughter to nearly all of her pediatric specialist appointments by herself. Perhaps because I tried to stay optimistic, I rejected the idea of more comprehensive problems. But even within me, the dread began to stir.

What I never suspected was that this would soon become the second most stressful and medically-involved period of our daughter’s young life.

To be continued…

When Lisa told me she wanted to take Gabriella on a pilgrimage to Lourdes, I was skeptical. All we had gone through since her birth had left my relationship with God strained. But she felt we should try anything that might help, so we decided to go.

Now we had endured a difficult trip, only to find ourselves stranded in our cramped hotel, a short walk from the holy site. And it was pouring. I had hoped this journey would restore my faith, but I was having doubts.

It was not my finest hour. I had been negative as we sat for five hours on the tarmac, cynical as we raced across Paris to meet our connecting flight, and bitter as the setbacks mounted after we arrived in Lourdes. After a lengthy wait for the rain to slow, we abandoned the parking garage and returned to the Ibis.

The desk clerk handed me a message. Our travel agent had called, referring us to the tour packager in Paris. While I went back downstairs to fetch another bottle of formula from the hotel bar refrigerator, Lisa tried several times before getting through.

Coming into the room, I heard her expressing disbelief. Now what?

I tuned the conversation out, playing with Gabriella. I rocked her and whistled on the corner of the bed. Her smile broadened.

“There’s a pilot strike on Air Inter,” Lisa said after she hung up.

“What the hell does that mean?” She looked at me with pity. I had promised to watch my language, and here we were, so close to the shrine. But I was fed up.

It meant our return flight to Paris was canceled. We would have to fly back a day later, costing us our one afternoon in the capital. We had both been looking forward to that, figuring it might well be our only chance ever to see Notre Dame or the Louvre.

After more bitching, I resigned myself to spending the rest of the trip in this room, but I agreed to bottle my anger.

With our whole first day wasted, we headed to dinner. It slowed to a drizzle, and loading Gabriella in the car seemed like less of a hassle. Perhaps it was the reduced weight on my shoulder, with the massive chip hacked away. I only wondered how soon it would grow back, the way they said our daughter’s skull would close over her surgical site.

It was early and most of the restaurants weren’t serving dinner yet. The one open place we found was at no risk of earning a Michelin star. When we finished, it had stopped raining.

“Do you want to try?” Lisa said.

“To go to the grotto?” She nodded, and I added, “It’s after six-thirty, but we might not get another chance.”

Already it was dark, but a strange light flickered within me. This wasn’t hope, was it?

We parked near the holy site, unloaded Gabriella into the stroller and rolled down the narrow street to the bottom of the hill. The Pyrenees formed a rainbow of pastels on the horizon. The sun faded to brown, aided by a layer of clouds, but it appeared the weather would hold out. At least for a time.

I promised myself again to try.

We reached the outer fence. Many of the guidebooks portrayed Lourdes as a hotbed of commercialism, but this wasn’t so bad. A few vendors under umbrellas sold trinkets and shirts, hardy types who looked as if they’d braved the rain for hours.

Pilgrims rose into view on the entry ramp. People just like us.

Up the slope, a stone facing rose to a railed walkway. A narrow pipe leader ran along the wall, opening into taps every several feet. Lisa realized we had no bottles with us, even though she’d been planning to bring holy water to family and friends. We chose optimism, assuming we would get back in the two remaining days.

The piping wound back around the rock-face to a spot cordoned off by movie-theater roping. I was unsure what to expect, but it hadn’t been this. A few dozen pilgrims sat on benches on the perimeter and stood at the entrance to the ropes. Some were infirm, a few in chairs or stooped over canes or walkers. Compelled by pity and recognition, I wheeled to where I could get a better view.

The Grotto, riven into the rock-face, glowed with candles small and large and gigantic, all rising to the blue-robed figure of the Virgin Mary enshrined above. Dozens of flames, planted on the walls on both sides, twitched in the breeze. Dark clouds rushed overhead now, restless. I felt a sudden rush, plunging me to unknown depths.

All the torment of the past few days paled and faded, and then the anguish of months and years, the heartbreak of Gabriella’s short life. What it was – renewed faith, or joy, or something wondrous or mystical – I couldn’t define. But I saw my Christianity differently, a bright light as from within.

For an instant I was alone in the sweet light, apart even from my wife and child in the stroller between us, and yet also bound in something new.

What had conjured such a feeling, I couldn’t tell. Maybe it was the sight of pilgrims bent prostrate before the shrine, maybe the familiarity of the Madonna statue that seemed identical to the one we saw in our church every week. Had I needed to journey across the world to find the faith within me? I found it hard to believe it could be that simple.

We took turns taking our daughter up toward the Grotto. Lisa came back beaming and handed her to me, and her face split in a smile, perhaps because she knew she was going again. She gurgled happy sounds on our climb, and tears filled my eyes. At the top, a handful of pilgrims waited and we left them a respectful distance. Then it was our turn.

I carried Gabriella into the Grotto. Candles glowed in the night, with a smell like burning honey. Mary arched above, out of reach and yet able to touch us. Water dripped down the wall, natural – no spigots here. This wetness was purer, and it splashed onto my hand and then over the scar on her skull, nourishing the healing process. We circled the crescent, a slow and gentle sixty seconds, with holy mist filling the air. And then we emerged into the evening.

All at once I knew no guilt. For thousands of years, pilgrims of all religions had endured hardships and strife far more extreme than our few days to journey to holy sites and shrines. I had been weak, but my family had helped me overcome my obstacles and find my reward.

Within a few days we would begin a return trip that was blessedly uneventful, but first there was more to come at the holy site: Lisa dunking herself (and the son inside her) and then Gabriella in the famous baths; our visit to the basilica on the side of the hill; the three of us joining the candlelit procession to the underground church. But it was our brief time in the Grotto that gave me the foundation to rebuild my faith upon.

Soon after the final pathology report, Lisa suggested we take Gabriella to Lourdes. Our daughter was little more than a year old when she had the tumor excised from her skull, with the frozen section indicating the growth was malignant. After an excruciating wait, we got the diagnosis we prayed for. It was benign.

It had been an exhausting sixteen months. We were relieved and thankful. After the Level II ultrasound, we were optimistic as well about Lisa’s second pregnancy, which was about halfway along.

We would take a pilgrimage to the holy city of southern France.

We chose Air France, in part because they guaranteed a bassinet on board the plane. In Paris we would transfer to Air Inter, their subsidiary for trips within French borders, for the connection to Tarbes, a short drive from Lourdes.

On the day of our departure, we went to JFK. An Air France representative met us at the registration desk and assured us everything was as planned. When we boarded, however, we discovered that the bassinet we’d reserved was broken. We told the stewardess we had counted on having a place to stretch out during the flight. “It ees not possible,” the stewardess said with a girlish shrug, not the last time we would hear that charming expression.

Fortunately, we had purchased a third ticket for each leg to ensure our daughter could take off and land in her car-seat. Lisa gave her Benadryl and brushed a quick sign of the cross.

After a while I asked, “Why aren’t we going anywhere?”

Then the pilot’s voice came over the loudspeaker, first in French, then in English. The flight would be delayed for up to an hour.

By shifting her between the car seat and my arms and Lisa’s and a blanket we stretched across two seats, we kept her quiet for that hour. And for the one that followed. One announcement led to another, with the third inviting passengers to get off the plane and wander the airport. So far, however, Gabriella remained calm, so we stayed put.

At last we took off. We had spent five hours on the tarmac, during which Gabriella remained quiet. But by the time we crossed over Boston, the Benadryl had worn off and her patience vanished.

She cried and screamed and complained the entire flight. We were frustrated and embarrassed. I remembered my own annoyance on airplanes when parents couldn’t prevent their baby from crying. Now that was us. It was everything I’d feared about air travel with our daughter, and it has put me off flying with her ever since.

We landed at Orly with a groggy sense of losing our way. Instead of getting in after midnight, our flight landed in early morning, and we had slept little. We also missed the last connection of the day to Lourdes.

Many people have nightmare travel stories, and this was ours. We worried about where we might stay without that connection, for the Ibis Hotel we had reserved included a refrigerator to chill our daughter’s formula. The airline said they could get us to Pau, another nearby city. We collected our bags and staggered through the airport, then caught the shuttle for De Gaulle, from which the Pau flight would leave. We barely made it and three attendants waved us through. Maybe they were impatient with our tardiness, maybe we just felt wretched by this point.

We got to our seats and fastened our belts and secured Gabriella’s car-seat. She was tired, already whining.

Then the steward came over to us. “You must hold the baby,” he said.

“That’s why we paid for the third seat,” I explained.

He shook his head. “It is French law,” he said. “The baby can not take off in seat. Mother must hold her.”

“She took off in this car-seat on the flight from New York,” I said, incredulous. “That was Air France.”

“It ees not possible.”

“We can’t take off with her unbuckled,” Lisa said. “It’s not safe.”

The steward had been conferring with a stewardess not ten feet away, and now she approached. “In France, the child takes off and lands in the mother’s arms,” she said and smiled at me. “Or the father’s.”

We refused. Tense minutes passed before the pilot or co-pilot came out. He again explained the French law.

“Look,” Lisa said. “We’re going to take off with her in her car-seat. If someone wants to arrest me when we land, that’s fine, but I’m not risking the life of my daughter.”

It occurred to me this was the defiance of a mother, a quiet strength I could only admire.

At last, the pilot nodded and they backed down.

We landed in Pau and no one hassled us, but they seemed glad to see us deplane. After a lengthy discussion at the Avis counter, trying to explain why we were seeking a rental there and not in Tarbes, we reached our Volkswagen Golf Twingo. There was just enough room in the “trunk” for our suitcase, but we squeezed bags of formula and baby food into the front passenger side and affixed Gabriella’s car-seat in the back.

We set off for Lourdes, but every time we approached the route out of Pau, we saw the same landmarks. Could that possibly be the riverfront, again? Gabriella, exhausted from the trip, arched in her car-seat. She wanted nothing more than to lie down with a bottle to her lips, not sucking but only mouthing, a warm wet pacifier. Finally, we found a gendarme and got directions to the National Highway.

We reached our hotel in Lourdes in late afternoon. The room was spartan, with the double bed and Gabriella’s cot leaving a six-inch margin of hardwood around much of the perimeter. “Where’s the refrigerator?” I asked, dread setting in again.

I descended to the lobby. The desk clerk smiled back at me. I explained that we were supposed to have a refrigerator. She said they had no refrigerators in their rooms. “We need it for the baby’s bottles,” I said.

She shrugged. “It ees not possible.”

After a while, she offered to store the bottles in the refrigerator of the hotel bar. We accepted with gratitude.

After a room-service meal, we all fell into a deep sleep. Gabriella woke up hungry in the middle of the night. I struggled into clothes and headed back to the lobby, dreading the inevitable message. But not this time. A young man fetched our bottle bag from the refrigerator.

By noon the next day, we were ready to venture out to the holy site. It was a comfortable walk to the shrine and the grotto, and we had the stroller. But it had started to rain, hard, and everything we had come for waited outdoors and unsheltered.

After much deliberation, we squeezed back into our Twingo and drove to the Information Center. It was closed until two o’clock. And the rain picked up.

We parked in a garage a few blocks from the center. When we reached the surface, the weather was unrelenting. We opted to wait it out, but Gabriella grew cranky, whining, complaining. We returned to the car and drove back to our hotel.

My nerves frayed. I wondered whether we would ever reach the holy site. I wondered if I cared any longer.

To be continued…

“Luck!” “Skill!” When we were kids, we used to bicker about the origins of a long swish on the basketball court or a slashing hit with the wiffle ball bat. (“That was luck!” “It was not – it was pure skill!”). I was thinking about that in reflecting on yesterday’s basket raffle at Gabriella’s old school, where there was plenty of both on display.

The basket raffle, also known as a tricky-tray auction, is Lakeview School’s biggest fund raiser. After missing last year, my mom joined us, and Gabriella had a favorite nurse along. We felt fortunate as well because Alexander called during the week to say he would drive out from his waning weeks at college to volunteer.

A lot of expertise goes into preparing for the event. Lisa and her friends on the Parents Association prepare for months in advance, first by collecting gifts and then by bundling the donated items into gift baskets and wrapping them appealingly. Over the last few days, they group hundreds of prizes into five categories by price and lay them out around the corridors. By the time Sunday afternoon arrives, they are weary but proud. They are a great community, a mix of family of current students and moms of alumni like Gabriella, all devoted to the success of the school that offered our children so many wonderful experiences.

Gabriella lit up as she always does when we approached the place she attended for eighteen years, and even more so as we entered the building. I still feel blessed that we got her into Lakeview after the early disputes with our former school district. She had paraded through this entrance every morning and she recognized it at once. Instead of the guard, several volunteers were there to welcome participants and sell ticket packages. Our daughter saw her Mom at the front desk and her smile broadened.

Sometimes I’ve worried this day might be a little confusing for Gabriella. Unlike a typical weekday, when the school is filled with kids and teachers and therapists, there are few children and fewer staff. We still come for other events, too, including Lunch with Santa and the Halloween Party, where the students are plentiful. (In a few weeks, we will again attend the Lakeview Prom, but that’s at a catering hall.) I don’t always give her enough credit, because this was her eleventh basket raffle and she seemed just as well acclimated from the time we got there, displaying her own personal ability.

Gabriella’s nurse took her around to see all the baskets, and this being Lakeview, everyone was extra aware of kids passing through in wheelchairs. Every so often, the organizers made an announcement on the PA system – so loud that our daughter began to sob. Luckily, we had packed her noise-canceling headphones, and she calmed right away. Meanwhile, I purchased my tickets and put them into the buckets for the many items Lisa had identified on her program. The lines were long and meandering, which I have to confess tried my patience, but of course the congestion indicated it would be another lucrative day. Soon it was time for the drawings, the ultimate sign of chance.

Mom won the second basket called and our nurse got one soon after. Alexander had his eye on a Japanese-style tea set including cups without handles, and we all stuffed that bucket – and he claimed that, too. Less than a quarter of the way through reading prizes, our table shared great fortune.

The Parents Association ran the event like clockwork, using a virtuosity they have cultivated over the past decade. Alexander and his fellow runners distributed the gifts, rolling carts with baskets through the halls between the rooms with bidders. I noticed a young boy pushing a cart and it reminded me of the first few times, when our son and his best friend were among the youngest volunteers. Now he was one of only a couple old enough to distribute the few prizes containing wine.

Our primary donation was a Roomba and I put several tickets into the bucket. Even though we gave that prize, I would feel no shame if we won it. But it was not to be. As happens most years, Lisa and I didn’t happen to win a basket ourselves.

Most importantly, the outcome was another productive day. We had often heard about the administration’s vision of building an aquatic center for its kids. The luck and skill of ten prior basket raffles, along with other fund raisers, enabled them to open the first school-based hydrotherapy pool in New Jersey last fall. We had the pleasure to see the facility in December. It allows a student in a specialized wheelchair to roll into place before lowering the floor and submerging child-and-chair for treatment. It was amazing. We felt a lot of pride that afternoon.

In 2005, Gabriella faced surgery again. We had prepared our daughter for operations before, but not for six years. Now her scoliosis developed to where we had to act at once.

The curvature of her spine caused her increasing discomfort, so we knew this was coming. But her orthopedic surgeon, a doctor we respected, made it an easy decision. He told us if we waited any longer, he would have to do two procedures instead of one. The first would involve an entering through her back … with a second a few days later with an incision in her abdomen.

Gabriella experienced the OR ten times by her fourth birthday. In the years since her last cranial surgery, we had grown into more routine, more normalcy. But we summoned the fortitude that had lain dormant. That morning in late September, we found ourselves once more in the waiting room.

We had risen early, gotten our daughter ready, and driven to Robert Wood Johnson Hospital. As usual, Lisa got her admitted while I parked the car in the underground garage. After her doctor greeted us, we met the anesthesiologist. General anesthesia was always nerve-wracking, but we became comfortable with the surgical team. But we also knew this would be a big one.

Gabriella had already had three operations on her skull to remove a recurrent tumor, but spinal fusion was a complex procedure. The orthopedic surgeon warned it would take as long as six hours.

They let one parent escort her into the operating room. While it was daunting to deliver my child into this environment, I felt she appreciated my presence while still conscious. After they got me outfitted in scrubs and a mask of my own, I held her hand as we walked down the hall and then in the OR. Often, I whistled to keep her calm until they administered the anesthesia. But this time seemed different.

First, there was a larger team already gathered than in all of her earlier surgeries, doctors and nurses bustling about getting ready. The crowd was intimidating, but not so much as the array of tools and equipment, screws and rods and implements for cutting. I emerged from this sobering scene in a haze.

Lisa and I waited with reading material, but were unable to concentrate for long. And it was a busy waiting room, with other patients’ family members coming and going. By the time an hour passed, we thought we had been there three. Whenever the door opened, we looked up, anxious to see the surgeon still wearing his scrubs. We glanced at each other as frequently as the newspapers or books in our laps.

At last, our doctor came in. He gestured to a quiet corner. We rose and followed, fearful, and sat across from him. I gripped Lisa’s hand in mine. He said she had done well, although they had transfused a lot of blood. I donated in advance, and was relieved I had been able to do something to help.

“Can we see her?”

He nodded and led down an endless hallway to the recovery area. We passed curtained sections until we reached our daughter. She lay on a gurney in her hospital gown. Her face was so swollen, we barely recognized our own child. Despite this jarring vision, they assured us she was doing well. Until her oxygen level began to fall.

After a chest x-ray, they explained that there were post-surgical complications. Gabriella suffered a collapsed lung. They took her to Intensive Care, unconscious and with a breathing tube.

We fought off tears. She had been through so much, and she was bigger than all those earlier stays, but this seemed far worse. We held her hands and stroked her hair; we whispered that Mommy and Daddy were here now. But she didn’t respond.

Thus began a frightening stay in the ICU. Her grandparents brought Alexander to visit his sister, although we gave him limited exposure because we didn’t want him to be scared off by her appearance. As night approached, we considered our options.

During all of her prior hospitalizations, we had traded off. Lisa stayed the first night, while I went home to sleep, then after a quick shower in the morning I returned. Then we’d switch places for the next overnight. But this was different, and the nursing staff in Intensive Care allowed us both to stay.

These nurses and aides were phenomenal during Gabriella’s stay, and the orthopedic surgeon was gentle and compassionate. Throughout it all, we always felt like she was in good hands.

Our daughter was out cold for two full days while intubated. After they removed the breathing tube, it took another day for her to come out of it.

Because of the congestion in her lungs, they needed to do regular chest PT. This involved striking a cupped hand or a plastic cup like a mask against her back and front and side. Gabriella never liked this, often showing us the pout she made when her feelings were hurt. Now it became heartbreaking to watch, since they did chest PT through her heavy bandages.

As she recovered, family and friends came to visit. One friend was the mom of a fellow student of Gabriella’s at school. She had shared the difficulties of her own daughter’s scoliosis surgery and we appreciated her reassurances.

After five days in Intensive Care, she moved to a hospital room. The swelling on her face receded. Another forty-eight hours, and we brought her home. She arrived to find a tangle of balloons and flowers, and a Build-a-Bear from her friends at Lakeview.

It was then that her recovery accelerated. Within another week, we put the terrifying ordeal of her worst-ever surgery behind all of us. We welcomed the return of our routines, with just a bit more appreciation for our own unique version of “normal”.