This will be my last post, at least for a while. ThingsMyDaughterTaughtMe is going on hiatus, but before I sign off, I wanted to express my gratitude to each of you.

I started this blog to share different aspects of our life as a family, including experiences, everyday activities, and some lessons I’ve learned along the way.

Posting has allowed me to reflect on the most intense events of Gabriella’s early days, from her birth through her dehydration to the operations to remove cataracts and a recurring tumor. I recalled her diagnosis at six months and our euphoria when it turned out to be inaccurate. I related other moments of joy, including the Level Two ultrasound that proved our son was unaffected by his sister’s syndrome. Reliving these experiences stirred old anxieties, but also brought back feelings of relief and even nostalgia.

I recorded some of our routines, from the stories-and-prayers-and-whistling that mark every bedtime in our house, to the sleepless nights that follow, punctuated by the beep-be-beep-beeping of Gabriella’s pulse oximeter.

I told about some marvelous devices that have bolstered our daughter’s health and made our lives easier, as well as the challenges we’ve faced several times when the power went out.

I’ve reflected on our adventures in travel, hopeful that our successes and our course-corrections might inspire others to take similar risks. Another post highlighted the sensory-friendly showings that have become more prevalent these days, a welcome  and welcoming innovation for families like ours.

I described things that bring our daughter joy, Disney World and animals and swimming and being in motion, and the ways she expresses her elation. One recent post also shared my euphoria when she clicks and cries ‘Woo-ee!’

Several posts described my own faith journey, from the crisis I faced after Gabriella’s birth through our life-changing visit to Lourdes. That’s a story that remains incomplete, but writing about it helped me understand it better myself.

And I’ve celebrated the amazing people in our lives, family members and friends and professionals and the unique community surrounding us. I chronicled her days in Early Intervention and Lakeview School, including the need for brute advocacy against the bureaucracies out there, and her more recent adaptation into her day program at Ladacin. I even offered suggestions for the special education teachers of tomorrow, based on our experiences with some great teachers of today.

Much of this content has comprised my perspectives on life with Gabriella, but one week our son Alexander wrote a popular guest post. And several times I’ve given due praise to the remarkable woman with whom I share every day of this journey, my wife and Gabriella’s mom Lisa.

Several posts have gathered insights I thought worth sharing, thoughts on how being Gabriella’s dad has made me a better leader, a better writer, a better man. I pondered questions I’ve considered for twenty-four years, including ‘Why her?’ and ‘What must it be like to be Gabriella?’

Throughout these past eighteen months, one thing has been consistent: my amazing readers. Some of you have been here since that very first post about communion dresses, others found the blog in recent weeks. Whether you came only once or check in every week, I can say only Thank you. Thanks for the chance to share my feelings in a new way. Thank you for allowing me to reconnect with the memories.

As I said at the top of this post, I am putting the blog on hiatus. This has been a difficult decision, but I’ve covered the core of our family’s history, the essence of our daily lives, and more than enough ‘wisdom’. I’d rather stop posting before Things becomes derivative. If something changes and I have a new series of stories to tell, I may well resume this blog (and those of you who remain on the email distribution will receive a notice just as you have until now).

In any event, thank you, thank you, thank you.

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.

Travel with Gabriella has always had its limitations, but we’ve gotten more adventurous over the past few years. Last week we took perhaps our boldest step yet, a seven-night cruise.

It’s been three years now since our inaugural cruise, two nights up the Atlantic seaboard and back. That trip was simple, with no ports to navigate and just enough time on-board to reassure ourselves that our daughter could handle the motion.

This was a bolder step. Rather than departing from nearby Bayonne, the Norwegian Escape left from Midtown Manhattan. The ship stopped in four ports, only one of which used “tenders” that prevented Gabriella from disembarking. And the longer duration meant we had to rethink her care. Her huge pink duffel bag overflowed with her supplies.

Also, we learned from our prior experience, when bending over the low sofa-bed resulted in backaches, and we arranged for a hospital bed in our cabin. This offered not only the ability to raise and lower, but to elevate our daughter’s head at night to reduce the risk of gastric reflux.

One thing I looked forward to most was getting Gabriella in the pool. This remains a favorite activity, but we now feel much more secure using an accessible lift to transfer her from her wheelchair into the water. The ship provided such a mechanism, so on our first day out of port, she and I put on our bathing suits. It was chilly, but we were able to use a heated spot in an indoor area. She loved it, and so did I. For a while.

Unfortunately, that pool was less than four feet deep, which put a strain on my back. Further, the accessibility crew that operated the lift took longer to return than expected. By the time we got out, I was glad I had scheduled my massage for that afternoon.

Another thing that made us eager for this trip was the opportunity to set sail with our travel agent, Debbie from Cruise Planners. It was her presentation several years ago on travel for people with disabilities that prompted our first cruise, and when she offered us the chance to join a couple dozen others on this ship, we were thrilled. We dined with the group, and Gabriella welcomed our new friends.

Unlike our earlier “cruise to nowhere”, this itinerary included four ports, the first two in Maine, the latter two in eastern Canada.

Portland was a charming city and the day was unseasonably warm. Lisa, Gabriella and I meandered about in the morning, setting a pattern that would recur in most of the ports when we found excellent book stores (for me) and yarn shops (for Lisa). We returned to the ship to change and feed our daughter, anticipating the afternoon excursion we would take in town with Debbie’s group. Sadly, one bus had a problem with its lift and the tour company had to cancel the outing. We were disappointed to miss the chance to see the local lighthouses, but this outcome is not unusual even for experienced travelers with disabilities.

Bar Harbor was our tender port. This meant the ship was unable to dock close enough to set up a ramp for easy access on and off. Instead, the cruise line used small boats to ferry passengers to shore, and those in wheelchairs had to stay on the Escape. Lisa and I had prepared for this, and I spent the morning on an excursion to Acadia National Park, while she did the same in the afternoon. It was a beautiful location, and we enjoyed the vibrant foliage, even if we regretted having to visit individually and without our daughter.

Between Maine and Canada, the weather changed. Both St. John and Halifax were cold and rainy, but that didn’t stop us from pulling on our ponchos and grabbing umbrellas and venturing out to enjoy both cities. As is often the case, Gabriella most loved being in motion, enjoying the vibrations on the cobblestones in St. John and the steep climbs in Halifax.

On this, our second cruise, we learned several lessons. The hospital bed made a huge difference, and our backs felt better after seven nights on the Escape than they had after two on the prior ship. We also worked with the crew to get one meal pureed for her each day, allowing her to share the tasty food we enjoyed.

Gabriella showed a strong interest in several of the evening musical performances, including a couple piano shows in bars, a first for her. While the music was loud, her noise-reducing headphones enabled her to sit and watch with a huge smile for over an hour each night.

We also benefited from watching Debbie’s group in action. My instinct was to hang back in the doorway, but in entering a bar behind them, we followed into the middle of the room.

As always, I discovered a need for patience, of which I am often in short supply. More than once, we wolfed down our meals to rush out of a quiet dining room while Gabriella complained loudly. While we experienced kindness among our fellow travelers, we remained self-conscious when she expressed her discontent. As a result, we had food delivered to our cabin several times to avoid eating in public.

Our adventure drove one other conclusion: for our next cruise, we will consider bringing along a nurse. Even in a vacation environment, the 24×7 demands of care can become overwhelming. While this would still offer the joys of cruising with our daughter, it would also allow us to share some experiences as a couple.

In the end, despite the challenges, we all enjoyed our latest Escape.

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.