Not long ago, we were sitting in a restaurant, Lisa, Gabriella, Alexander and me. It was a family-friendly place – we don’t dare a lot of formal places with Gabriella these days – and children at other tables were chattering and squirming off their chairs. We had claimed an out-of-the-way spot, and placed our orders. That was when our daughter started…expressing her opinion.

We’re an unassuming family by nature. We attract undue interest just by showing up, navigating our daughter’s wheelchair between diners and chairs, keeping her from extending her hands as she rolls forward, clearing away plates and silverware when we reach our table to prevent her sweeping them to the floor. Then we sit, hoping to fade into the background.

Gabriella can be loud. On occasion, she will ratchet herself into gleeful whoo-ees. Her joy is infectious.

But more often while eating out, she complains. It starts as a low moaning, and escalates into all-out whinging. And there’s nowhere to hide.

Gabriella is non-verbal, meaning she cannot speak using words. But that doesn’t mean she’s not vocal. She has her own way of sharing her feelings, and we’re thankful for that, but we don’t like being a spectacle.

Over time, we’ve learned that her whinging conveys some combination of annoyance and boredom and a desire for attention. We can often tell when she’s cold or feels uncomfortable, or still hungry after eating a full meal, or when she wants to change activities. We’re thankful she expresses pain in a very different way.

Because she can’t explain it to us or to her doctors, we haven’t been able to find an underlying cause. Her genetic syndrome is undiagnosed, so we don’t know whether it has a behavioral element. She takes eight different medicines for seizures and reflux and respiratory concerns and other symptoms; the myriad interactions could play havoc with her nerves or her hormones.

When she whinges, we soothe her. Sometimes it works, and her smile brings us peace, but sometimes it doesn’t. We encourage, we scold, we plead. I sense my teeth clenching, my heart racing, my eyes locking within the confines of our table to avoid the interest around the room. I try not to worry about what other people think.

But I can’t help it.

Most of those around the room offer expressions of kindness, lips creased into a smile, perhaps a slight nod. A few say, “It’s okay.” It seems to me that since Gabriella’s childhood, society has become more accepting. Sometimes we appreciate our fellow diners’ understanding, but at other times it’s just another reason we beg her to be quiet. They mean well, but we don’t want pity, and even sympathy can sting.

We’d talked about it before we got to the restaurant. (The situation isn’t limited to dining venues, but most other places afford easier exits.) “This time we’re not going to let it bother us,” we said, trying to convince ourselves more than each other.

Sometimes we choose a familiar restaurant, where the management welcomes us at the door and, especially if it’s not crowded, we become less sensitive to our daughter’s moods. At other times we seek out a noisy place where Gabriella’s protests won’t be heard at the next table. But today we were in the mood for something different.

Today we wanted to be a normal family.

We rationalize that she needs to develop her attention span, that this is another opportunity for her to progress. She joins us most nights at the dinner table at home to build good habits. And we’ve had successes, making it to the end of a meal out without incident, a few times at least, relishing the rare anonymity.

It’s a lot to ask of her, and sometimes we leave her home. But she’s part of our family. And when we’re away, we don’t have that option.

So we come fortified. Gabriella has a tablet onto which her brother downloaded a dozen of her favorite videos. She also has an iPod with music ranging from Sesame Street to salsa, and noise-reducing headphones. These diversions can work, at least for a while. Otherwise we beg the waitress for to-go boxes or take turns walking her around the lobby or the parking lot, fighting our indigestion.

In many ways, we’re lucky. We vacationed multiple times this year, including Disney World and our recent cruise. But it happened at least once on every trip. We’ve come to expect it, but we never get used to the frustration, a feeling less of guilt or embarrassment than of regret. “We should have known better.” “This was the last time. Ever.”

But it won’t be the last. As much as we can’t escape the sense that we’re under a microscope, we’ll keep trying. We have to remain hopeful. Because when it works out, it feels amazing. No, better than amazing. It feels normal.

Every so often I think, ‘And so this is joy’. Not just happiness, but flat-out euphoria.

It happened this past weekend at the Lakeview School Halloween Party. It happened several times on our recent cruise. Sometimes we see it coming, other times it’s a surprise, but each time it’s like a revelation.

Our daughter is nonverbal. This presents a challenge, because we have to intuit what’s bothering her, whether hunger or boredom or discomfort. Other times, when she’s contented, there’s less urgency in figuring out the cause. Sometimes we’re just relieved, while at others she passes her own pleasure on to us.

But recently, seeing her filled with joy, I wanted to know.

In a simple state of happiness, her eyes grow wide. She might form kisses or click or make other gleeful sounds. She’ll grab her bib if she’s recently eaten, or a fistful of her shirt.

There are lots of things that make her happy.

Gabriella loves to be in motion. This can be as insignificant as rolling her around our house, sliding through doorways and between furniture, or it can involve getting outside, pushing her wheelchair up sidewalks and along the blacktop, each of us enjoying both the bumps and the flat stretches. She doesn’t care whether the air is still or the wind is whipping off the beach up onto the boardwalk so that her lightweight poncho flops over and covers her face. Scooting through the mall or lapping the running track on a cruise ship, she takes pleasure.

She shows her happiness as well when we answer her call on the monitor and come downstairs to get her changed and dressed and ready for the day, perhaps from the satisfaction that we understood her.

When Gabriella is happy, those around her are as well. It’s difficult even after all these years not to smile when she clicks. Her pleasure when on the move, her satisfaction at being understood, her enjoyment of simple attention, all are contagious.

But these are instances of happiness. Rarer, but not rare, are those moments of pure joy.

Music brings our daughter joy. Often she is ensconced in her noise-reducing headphones and so hears only a fraction of the harmonic sounds being created, but for her it’s enough. It happened on the cruise, when we packed into the back of a shipboard bar to listen to a piano player while a raucous crowd sang along. I saw it Saturday at the Halloween party, with the DJ blaring tunes.

In each case, Gabriella took in an experience combining unusual sights and sounds, as if the combination of sensations amped up her emotions. Perhaps having Lisa or me or both of us at her side helped as well. Whatever the cause, her eyebrows arched, her fists clenched, her mouth contorted and emitted an ecstasy that seemed beyond her control.

Time in the swimming pool brings a similar reaction. She loves the feelings of the warm water lapping against her, of me holding her safe with her neck and head above the surface. She drinks in the sounds around us, sea gulls calling or a fountain running or the shouts of other bathers.

I have wondered at times if the sensations might be too much for her to process, whether they could even lead to seizures, to which she is prone. But they have not, as if touching another part of her brain, as if she controls more than we suspect.

In these moments, so near to her as she inflates with emotion, I am overcome.

But it’s not only her jubilation that’s resonating through me.

I have known sheer joy in my own life – our wedding, the thumbs-up our son made during the Level II ultrasound and his subsequent birth free of the anxieties of Gabriella’s arrival, other events and milestones – but I’ve never stopped to consider them. But in these instants when Gabriella is overcome with exuberance, I feel a thrill of my own, a surge, a delight.

And so this is joy.

Why her?

That question bubbled up right from the day of her extraordinary birth. Why did this happen to our daughter? Why her?

We’re not smokers, and we drink infrequently. Lisa knew she was pregnant from early on, and over the nine months she followed every rule. She didn’t take a single Tylenol. But from the moment the doctors removed her via C-section, her physical challenges were obvious. A club foot and a vertical talus. Two dislocated hips. Severe contractures of her joints. And so we asked.

Why her?

Sometimes the question reeked of self-pity. ‘Why her?’ translated to ‘Why us?’

Part of the allure of getting a genetic diagnosis was an explanation for what had happened. Syndromes have different causes, and some are anomalies. When the geneticist told us our daughter had Opitz trigonocephaly, we became consumed with the complications and the implications. As in a fairy tale, the diagnosis brought three consequences: she would have profound mental delays, she wouldn’t live to be a year old, and there was a one-in-four chance that the condition would recur in any future pregnancy.

But the diagnosis proved wrong and the geneticist recanted. And so the question rose up again in the shadows of our lives. Why, then? Why had this happened to her?

I went through a difficult period in my relationship with God, and this question weighed at its core. My faith suffered. It felt personal, as if our family had been singled out. Again I wondered why. We had always tried to be good Catholics. So why her?

People offered support, saying ‘God only gave you this burden because He knew you could handle it.’ (They didn’t realize that this seemed more like a punishment for our faith and fortitude, but we saw that they meant well.)

It took a pilgrimage to Lourdes to make my peace with God. I stopped seeing God as a thunderbolt-hurling deity and instead sought mercy.

After that, my blame was more aimless. If it wasn’t God, and it wasn’t us, was it fate? Was it just meant to be? But when bad things happen, fate is an unsatisfying explanation. It seems like another way of saying we have no idea.

Somewhere along the way, my perspective changed again. There wasn’t a moment of epiphany. Perhaps my sense of acceptance broadened. Whatever the cause, I stopped asking ‘Why her?’ Instead I thought ‘Why not her?’

I like to believe this might stem from the humbling we had experienced in our lives. Once I thought others more likely than us to have brought such a situation upon themselves by engaging in dangerous activities while pregnant. But did we deserve it less?

Then I realized that the whole notion of ‘Why her?’ is based on the assumption that what happened to Gabriella is unfortunate. But when I considered ‘Why not her?’ I also recognized that her situation, her life, is not a curse, but a blessing.

And for me, being Gabriella’s dad was an opportunity. I credit our life together with making me a better person, if only because I became more sensitive to the needs of those different from me. With making me a better leader, because she taught me to prioritize and to achieve balance. With making me a better writer, because she gave me rich material and helped me find emotional honesty. And, counter to my expectations, with making me more optimistic. Enough so that sometimes, on my best days, I ask ‘Why her?’ in a whole new way. As in, how did we get so lucky?

All of us remember where we were on 9/11. Like all of our family’s stories these past 24 years, my version is intertwined with our life with Gabriella.

On the morning of September 11, 2001, I found myself waiting on the tarmac at Newark Airport. My flight to Dulles was about to take off, in advance of my meeting with the SEC. Oblivious to the horror to come, I sat wondering how I would make it through the day after the night we had just experienced.

Our daughter had come home from school the prior day on the bus, but as Lisa pushed her up the driveway something didn’t seem right. By the time they reached the door, Gabriella started screaming.

While non-verbal, our daughter uses a variety of sounds to communicate her needs and wants. None of them involve screaming.

Lisa got her onto the sofa (her bedroom was still upstairs then), but she continued to sob. Every movement of her legs made her anguish worse. When my wife called the school, they said they had noticed nothing out of the ordinary; they let us know that she had spent time on the prone stander. (The stander is a piece of equipment that replicates the act of standing for people unable to support their own weight.) But she hadn’t cried at all. She rarely did except following a pout when her feelings were hurt, and those jags lasted less than a minute.

On September 10, the crying and screaming continued throughout the afternoon.

Lisa called me at work and I rushed home. On the way, I considered my meeting the following day. Four attorneys (two inside and two outside) were to accompany me to the SEC to discuss an innovative new product we were developing. As the lone business person attending, I felt I needed to be there. Just in case though, I arranged with a colleague to take my place in case I couldn’t go.

I arrived home to find Gabriella in obvious pain. She was pale and continued to cry. Unable to calm her, we drove to the emergency room. It was our first trip to the hospital in more than a year, the longest period in the seven years since her birth. We hadn’t missed it.

Our daughter has osteopenia, resulting in very thin bones. In the ER that night, we confirmed Lisa’s suspicion that she had suffered hairline fractures on both legs.

They splinted her legs, and inserted an IV to give her painkillers. After several hours, they discharged her. We arrived home at 2:30 a.m., and we didn’t get Gabriella to bed until after 3. The car service would arrive soon to pick me up. Lisa and I discussed me transitioning the trip to my colleague, but I was the product manager. I slept for forty minutes, then rose and showered.

Exhausted, I landed in Washington, D.C. When I reached the terminal, I called Lisa to check on Gabriella and to let her know we had touched down. (After that day, this became a routine for me, completed most times while still taxiing.) Then I headed to the offices of our outside law firm, Debevoise and Plimpton. In my haze, my thoughts kept returning to my daughter. Two broken legs!

When I got upstairs, I found the others hadn’t yet arrived, so I prepped for my meeting. Then the first plane hit the World Trade Center and the world changed. Someone called me into a conference room and we watched the image over and over. At that point, we all still thought it was an accident.

My colleagues arrived. The second tower was hit. Well before the third hijacked plane struck the Pentagon, we knew the United States was under attack, that 9/11 would become more than a date.

Minutes later, we stood watching the South Tower collapsing on the TV screen in the conference room. My fears for my daughter’s well-being suddenly seemed small, but they remained no less vivid to me.

At home, Lisa was trying to reach me again, but with the cell towers out, phone service was sporadic. The morning passed, surreal. I experienced spikes of adrenaline and grogginess after my endless night. At one point I remember a local news correspondent saying the USA Today building had been bombed. In retrospect, I’m not sure whether the media got that wrong or I was delirious with exhaustion.

The federal buildings had been closed soon after the planes hit the Trade Center, our meeting postponed. Like so many, we struggled to find a way out of the city, with flights grounded and trains canceled, a shortage of rental cars and hotels occupied out to Bethesda. I considered staying with my brother in northern Virginia, but given Gabriella’s condition I was desperate to get home.

Then the Debevoise managing partner in D.C. offered to have his driver take us home. For this act of kindness, I am grateful to this day. This man drove us each to our doorstep.

As we came up an almost deserted New Jersey Turnpike, we saw thick smoke in the direction of Manhattan. That fog seemed symbolic.

Because we live in central New Jersey, our house was the first stop. I rushed from the car to find my family safe. Gabriella was just beginning her recovery, and it would require time and care to nurse her back to health. In the days and weeks to come, we would know confusion and frustration and anxiety. We would seek to understand how such a thing could have happened, and take steps to make sure it never recurred. But after the events of 9/11, the sight of her lying there among her mom and brother and her grandparents brought only relief.

We were among the lucky ones.

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.