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…

Lisa and I were blessed with amazing dads. This Father’s Day, I’d like to share some things we learned from Paul Van Heest, Sr. and Anthony Lobaito that influenced our life together.

1. Put Family First – Both directed their big hearts at their families, and from the beginning both were enchanted with Gabriella. We remember Lisa’s father crawling on the floor to get alongside her, even though his knees punished him when he got up. My dad took lots of video with the camcorder he hefted on his shoulder. Both tried to treat her no differently than their other grandchildren, but each recognized her for the special person she was. Although her emerging condition was a lot for them to comprehend, they always showed empathy and encouraged us, her parents, despite their own anguish.

When we were kids, it was important to our fathers to spend time with us, playing, joking, sharing lessons. They were capable of great sacrifices for their families. Lisa’s dad worked two jobs for much of his adult life. And when my brother got engaged to a young lady from Kirghizstan, Dad taught himself Russian to help her feel more welcome when she arrived in the United States. Both formed superb teams with our moms, modeling the marriage we aspired to – unified, supportive, loving – and which became a foundation for the partnership we’ve depended on when faced with our own challenges.

2. Make Character a Priority – Lisa’s father had a keen sense of direction, but we used to joke that my dad could get lost pulling out of the driveway. Both men, however, had excellent moral compasses. Many times, I’ve asked myself what my father would have thought or done, in making my own decisions, and it’s always served me well.

Both fathers were well-intentioned and respected those they met as if they were, too. When things go wrong, it’s natural to blame others, but I try to apply their lesson and assume people are acting with the right motivations. When I was younger, I had grand ambitions, not least for the books I would write. The humility I saw in both men led me to accept when life events shifted my priorities and deferred my dreams of authorship.

Lisa’s dad was sensitive and cried easily. As readers of this blog know well, I allow my emotions to show much more in the past twenty-three than I did before Gabriella was born, and I got more comfortable doing so in watching him.

3. Make the Most of Life (including Retirement) – We visited both of our dads this weekend at the mausoleum ten minutes from our house. Both died in their seventies, far too young. Some lessons come only in retrospect.

My father retired at 55, with a long list of things he wanted to do with his new freedom. He and Mom did a great deal of traveling that first decade, but he finished most of the others within a shorter time than he expected. In his late sixties, he developed Alzheimer’s, which plagued him for seven years before he passed away. Lisa’s dad suffered a mugging in New York City that stunted and ultimately cut short his working years, and he too spent his later life with less to do than he would have liked.

As I’ve transitioned into my own early retirement, I recognize the need to ‘retire to’ something. Writing and blogging allow me to pursue a lifelong dream, and together with teaming with Lisa to care for Gabriella, offer richness and fulfillment.

4. Think Well Ahead – My father was an accomplished planner. One of our close friends always called him his hero for the way he prepared his financial future. His ability to retire young from a middle-class job resulted from decades of planning, investing as much as he could for his retirement and spending the time to ensure Mom would be provided of. His long-term care insurance helped when his Alzheimer’s worsened, while still protecting her interests.

With Gabriella, planning has always been a focus for us. When she turned 18, she became a legal adult and we had to apply for guardianship. It was critical to understand the nuances for qualifying for SSI and Medicaid, and we established a special needs trust.

Even though they’re gone, our dads left a lifetime of memories and a legacy of lessons on how to excel as a father. Today on Father’s Day, I honor them.

Last Wednesday morning, just after we arrived at the Magic Kingdom, Gabriella and I waited on a short standby line for Prince Charming’s Carousel. Lisa and Alexander had fast-passed Space Mountain, and my daughter and I were taking in the sights and sounds of Disney World, beginning with Cinderella’s castle. From the moment we came through the front gates, her face had brightened with joy.

A cast member directed us to a separate entrance marked with a wheelchair and soon they helped us roll into an accessible ‘car’ on the merry-go-round. All around, eager riders had climbed onto well-crafted horses. As we waited, we heard Chim Chim Cher-ee, one of Gabriella’s favorite tunes from Mary Poppins.

Then the bell sounded, like in the memorable scene from Poppins, and the platform began to rotate. She gloried in the sight of the horses and riders rising and plunging. When the ride ended, I tried to get the cast member’s attention to unload us, but even waving my arms was unsuccessful. When he did his final rounds for the next circuit, he saw us and realized he had forgotten about us. He apologized … and invited us to go around again. Which we did.

While the oversight was unusual at Disney, the flexibility and generosity were anything but.

This time Gabriella grew excited at the opening bell, knowing what was coming next, and she enjoyed it even more. As we rode, I recalled our last visit three years ago, when a cast member working the Winnie-the-Pooh ride offered us a second turn.

This became a familiar theme for us last week, with our good fortune on the carousel followed by other ‘double chances’. As we boarded the Magic Carpets of Aladdin, the cast member said we were welcome to ride twice, and mentioned several other rides throughout the park (including Pooh and Jungle Cruise) that allowed second trips. We especially enjoyed Aladdin because Lisa and I were both able to sit with her as we rose and dipped and ducked the water-squirts from the camels around the perimeter.

This was our fourth trip to Disney as a family, and we’ve always found it far more accessible than other theme parks. More than just about anywhere else. But it’s been interesting to watch the evolution over 17 years.

The first time we visited, two months after 9/11, they gave preferential treatment to people with disabilities. When we approached a ride, we were led to the front of the queue. Both of our kids had autograph books, and the cast members working the character greetings moved us forward. While we were relieved that our daughter didn’t have to wait in the hot sun, we also felt badly … and even more when a girl we jumped ahead of cried.

On subsequent trips, we left the autograph collections at home. When we wanted to meet characters, we found short lines or joined breakfasts where they featured.

By our third trip, Disney changed their policy in response to visitors taking advantage. We heard that some families actually ‘rented’ a person with disabilities to avoid waiting in line. Now the parks issue people like our daughter special status that enables them to go to a ride and receive a return time (often an hour or more later) rather than standing out in the sun. It’s another way they’ve created access.

The thing I love most about Disney World is that they plan accessibility into the design of their attractions. The park brochures are clear which rides allow a passenger to remain in her own wheelchair, which require a transfer, and which are not accessible.

In each case, Disney invests big in welcoming people with disabilities. In addition to accessible vehicles within many rides, they devote both space for alternate pathways that are just as well decorated. And they provide cast members at every gate, always happy to help us load and unload.

Because it’s difficult to lift Gabriella up or down into position, we limit ourselves to one or two rides in each park that require transfers. She has always enjoyed Soarin’ in Epcot, and this year she got to experience the Na’vi River Journey, part of the new Pandora world within Animal Kingdom. (We will write to ask that they add an accessible car to this ride by our next visit, and are grateful that they are open-minded enough to consider it.)

During our earlier visits, we worried that the parks would present Gabriella with sensory overload. Now we focus on sound. We have an excellent set of noise-reducing headphones that allows her to hear at a reduced level without becoming overwhelmed. Nowhere was this more appreciated than at the Rivers of Light show; on our prior trips Animal Kingdom closed at 6 pm, but along with staying open later they have added this new attraction that accomplishes with water what the Magic Kingdom does with fireworks. Comfortable within her headphones, Gabriella gushed Whoo-ee over and over as they projected images of animals on spraying fountains.

But it’s not just the splashy rides and shows that make Disney magic for our daughter. From the butternut squash soup at Boma, to the motion of the train around the Magic Kingdom and the ferry to Disney Springs, to the beeping of the monorail and even in our elevator in Bay Lake Tower, she basked in the overall experience.

Gabriella even enjoyed the AutoTrain. She didn’t seem to mind the multi-hour delays in both directions. She was probably aware we were on our way to her two favorite places on earth, Disney World and home.

What if? Isn’t that the question many of us ask throughout lives? What if I had gone the other way at the fork? What if I had been luckier or reacted differently? What if events hadn’t turned out as they had?

Isn’t ‘what if’ a dangerous question? And yet, haven’t I asked it many times in twenty-three years?

What if Gabriella was born normal?

What if her disability was less severe? What if she needed fewer surgeries? Fewer hospitalizations? What if she didn’t have gastric reflux that brings her nausea and vomiting? Or epilepsy, causing seizures and requiring a mix of medicines that risk indecipherable side-effects?

But haven’t we sat in the ICU, noticing parents of kids on ventilators or dialysis machines, thankful that our daughter’s plight is not worse? Don’t we know others who suffer from drop seizures that threaten physical harm every time, or need more intense equipment? Why would I tempt fate?

What about narrowing my inquiry?

What if our daughter could speak in words? If she could tell us it’s her head that hurts, or her stomach? What is she aching to say? Then again, what could she express more beautifully than with a click or a whoo-ee?

What if she could walk? Would she love to run a marathon or dance the tarantella or climb a mountain? Would any of those experiences bring her more joy than riding the dunes in her beach wheelchair?

What if ‘what if’ is a selfish question? Would Gabriella want to be different than she is, or is this really about me and us (her parents and family and friends)? Is my real plea that we be spared all the hand-wringing, the backaches, the monotonous routines day after day, week after week, year after year?

And what about all we’ve learned from her? What if she hadn’t taught us to love more deeply than we ever knew? To devote ourselves to another person and to become attuned for another’s needs? What if she hadn’t shaped the way her brother sees the world?

What if she hadn’t helped me put life into perspective? What if my priorities were not based on a life shaped around her? Would I have been a different person, with other values, focused on things that seem less important to me now? If not for her, what would I write about?

What about all the great friends we’ve made, the colleagues the company I chose for the work-life balance it offered in the 1990s, the neighbors in the town we moved to for its reputation for working with families like ours, the community at the school we fought to get our daughter into?

How would my soul replace the blessings it’s gotten from a child’s unexpected gift or an adult’s act of kindness? From the wonders religious and spiritual, planned and unplanned?

What, indeed, if Gabriella was born normal?

And what is ‘normal’? Don’t so many children face challenges, from anxiety to food allergies to learning disabilities? Would I prefer she had one of those? What about the kids stricken with cancer and other life-threatening illnesses?

Am I simply wishing my child was perfect? Or am I just not acknowledging that she already is?