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.

Because I spend my days now writing historical fiction, I tend to think in terms of genres. It occurs to me that the story of our family life with Gabriella has assumed the features of many fictional categories over the years.

When she was born, we found ourselves thrust into a Horror story. With no medical background (and an admittedly squeamish nature), I was awestruck as the obstetrician cut into my wife and pulled our daughter from her body. From the start, we knew something was wrong, but we had no idea what. It soon became clear we faced a monstrous threat to our child’s life. Her inability to nurse reduced her weight to under five pounds and sapped her strength during her first two weeks, and we barely reached the emergency room in time to skirt disaster. Like the Friday the 13^th series, this tale of terror has had too many sequels, leaving us wrung out whenever we got through the current ordeal and dreading the next one.

In less than a year, cataracts appeared in both of Gabriella’s eyes. Over four surgeries, the ophthalmologist removed the clouded lenses and replaced them with artificial ones. For me, my child’s ability to see through these intraocular lenses was the stuff of Science Fiction, reinforced when she tired of glasses and contacts and remained able to track us with her ‘new eyes’. The medical technologies that unfold today reinforce this sensation.

There was nothing cozy about the Mystery of trying to understand our child’s condition. Gabriella’s diagnosis, a genetic syndrome that doomed her to a life expectancy of one year, plunged us into mourning. But despite the geneticist’s certainty, we maintained hope, hunting for clues to disprove her hypothesis. We didn’t see the markings on her ears or the specific head-shape that were prominent symptoms. Not long after she celebrated her first birthday, the genetics team acknowledged it was a red herring. We were left without a solution, which no mystery reader likes. But given the alternative, we were relieved to treat each new situation as its own mystery.

Most of Gabriella’s childhood fell under the genre of Suspense. We survived on a constant diet of adrenalin, rushing from doctor’s office to ER like in a classic chase scene. After they removed a tumor from her skull and the frozen section showed it was malignant, we waited on tenterhooks for the doctor to share the final results. Our relief when we found it was benign was short-lived, as she was hospitalized with a seizure. On it went at a relentless pace. Even when things were calm, we awaited new twists like a character in a Hitchcock film.

While we weren’t looking, Gabriella experienced her own Coming-of-Age tale. As with so many things in her life, we learned to look at her development differently, celebrating milestones that go unnoticed in most lives. It can be challenging to know when it’s still appropriate to approach her like a small child and when like a young lady. Not long ago, we realized that she had grown more patient, more social, more mature.

Most of all, though, this has been a Love Story. When our daughter arrived to change our lives forever, a colleague told me this experience would either bring my wife and me closer together, or drive us apart. Lisa and I have been among the lucky ones, knowing other couples unable to survive the enormous stresses associated with raising a child with disabilities. For both of us, there has been another dimension of our family’s saga. Gabriella has taught us about true love, with her own being unconditional, her trust unwavering, her forgiveness immediate.

Whatever shapes the story of our family have taken over time, I find it’s influenced my writing in many ways, some of which I recognize, and some I probably never will.

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?

It’s now a cliché to say it takes a village to raise a child, but in no case is it truer than with a child born with disabilities. Our village has become multi-faceted over two decades.

In the early years, our community was made up of medical professionals. Gabriella’s birth left us blindsided, but an intuitive nurse helped me through the first few hours while my wife recovered from her Cesarean. Suddenly faced with the unexpected, we relied on her pediatrician and a few specialists as we navigated dehydration and cataracts and clubfoot surgery and a tumor on her skull. Even today, I become nostalgic when I meet one of those early mentors on our unlikely journey.

As our daughter’s health stabilized, our team evolved. Lisa took her each week to Early Intervention, where she worked with a special education teacher and a nurse and three therapists (PT, OT and speech). We found the same model at Lakeview School, where the staff helped Gabriella blossom with dedication and patience. Lakeview also introduced us to a community of parents facing similar challenges, an invaluable resource for the scary times.

When she turned 21, Gabriella aged out of school. In New Jersey, adult programs (it’s still hard sometimes to think of her as an ‘adult’) are county-based. We’re fortunate that Monmouth County provides good alternatives. She takes part in a day program that offers a community feel, and we are thrilled that she has now moved into a room led by a former special ed teacher that provides an atmosphere much like a classroom. Again we’ve met a group of administrators, therapists and families that has widened our circle.

On weekdays, Gabriella’s nurses come early, get her ready, spend the day with her, and then transition her back into the home environment. On weekends, they arrive later and care for her until bedtime. In all cases, they manage her medical needs. Our daughter forms an attachment to many of these women, which makes it more challenging to replace them when their careers and circumstances change. Three weeks ago, we were discussing how pleased we were with her four nurses; then two had changes in their situations. As has often happened, we are again working on identifying and training new nurses, recognizing that some might not pan out. But those that do become a vital part of her community.

Each April I participate on a panel of parents of kids with disabilities for future special education teachers. Over the years, I’ve heard other panelists discuss the state agencies responsible for managing benefits for disabled adults. What struck me was that the rules seemed always to be evolving. Now that Gabriella qualifies, we have experienced the system for ourselves. We work with a service coordinator who has helped us navigate the latest changes. One outcome is that because our daughter attends her program only four days per week, we have funding to put toward other activities. We are excited about an art session we’ve begun exploring.

Most important are our family and friends, most of whom have been with us since the beginning of our odyssey. Their love has provided the support we’ve leaned on in difficult times, and the camaraderie we’ve enjoyed when things have gone well.

All these medical professionals and educators and families and loved ones make up our village, and every village needs a mayor. For us, that has always been Lisa. For all those years I worked long hours, she coordinated all the different constituencies that make up Team Gabriella.

It says a lot about our society that so many have contributed to the care and development of this one special person.