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.

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.

Nostalgia is a funny thing. I’ve experienced it in memories of childhood, of our early marriage, of good friends, but I never expected to find it when thinking back to our daughter’s earliest surgeries, moments filled with shock and apprehension. Yet this week that’s what happened.

On Friday, Gabriella had an appointment with the ophthalmologist. She sees him only every couple of years, which is a good sign. It was to be a late morning visit, and Lisa reminded me that his office is often crowded, the waits long.

This would be the first time I had accompanied them to his office in twenty years. On the roster of medical specialists our daughter has seen over time, he has long been routine.

It wasn’t always that way. We discovered a milky blurring when she was six months old and learned soon after that she had cataracts. She was already seeing an ophthalmologist for strabismus, and he performed four separate surgeries for this new problem, two each to remove the cataracts and to implant intraocular lenses, plus a fifth to correct the crossing of her eyes.

The two excisions were her first two operations, her first exposure to anesthesia, our first exposure to the surgical waiting room. By the time he had inserted the second artificial lens, however, our daughter’s medical situation had grown more severe. Our frustrations over getting her to accept glasses or contact lenses paled alongside the need to break several bones to correct her clubfoot. Or multiple surgeries to remove a tumor affixed to her skull.

All of this is two decades in the past, but it still casts a long shadow over our lives. And yet I looked forward to this doctor’s appointment.

In the late morning, we got Gabriella ready and into our adapted minivan. The office is half an hour away, and we arrived fifteen minutes early. As I had before, I appreciated that he was the rare pediatric specialist who continued to see our daughter after she turned twenty-one.

Soon they called her name. A medical assistant led us into an outsized examining room. More than the handicap parking space at the end of the long row of exterior doors, more than the waiting-room with the bead-maze toys, this spot brought back memories. All around were pieces of equipment I recognized, even if I had never learned the names of any. And my déjà vu increased when her doctor came in.

Life with Gabriella has introduced us to the best and the worst of the medical profession. We had a geneticist with a miserable bedside manner. One surgeon couldn’t be bothered to let us know that the malignant frozen section was wrong, that our child didn’t have cancer. But there have been many more amazing physicians, neurologists and orthopedists and neurosurgeons, and this man, Dr. Engel, Gabriella’s only ophthalmologist over all that time.

We looked at each other with big smiles, we shook hands, we exchanged pleasantries. Two decades had grayed his temples and left a few lines on his face, but those kind eyes brought that spark of nostalgia. The eyes of an eye-doctor, they had reassured us and buoyed us and comforted us in those first unstable days.

Back then, his practice was small. When we met, he extended his hand and said, “Call me Mark.” Of all of her doctors, he was the one that felt like a colleague. A friend even.

He examined her on Friday with the same gentleness and easy command I remembered. Unlike the visual exams I’ve experienced, there was no eye chart with rows of shrinking letters, no refraction test with the fancy device with all those rotating and clicking lenses. He assessed her vision using measurements of the eyes, he puffed air to evaluate the risk of glaucoma, and then he dilated her pupils and we sat back in the waiting room before returning for him to examine the backs of her eyes. He also checked the intraocular lenses, which have held up well since she was three.

Then it was time to say farewell until her next appointment in two or three years. We shook hands again and headed out, and I felt a warmth I’ve rarely known in medical offices.

Nostalgia comes in the most unexpected places.

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.