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.

A week ago, we got Gabriella in the pool twice. This wasn’t always a big deal, but it is now.

Our daughter has always enjoyed the water. The sight of her shower chair rolling down the hall toward her room brings whoops of joy that continue until we dry her off afterward. Her favorite moments at the Shore involve riding her beach wheelchair into the low tide and feeling the spray on her toes. But the occasional dip in the pool remains her ideal.

We have our guesses why she loves it so much. After spending most of each day in her chair, it must be pleasant to feel her legs adrift. We only take her into heated pools, whether indoor or out, and the warmth seems to soothe her. Either Lisa or I hold her torso to torso, sometimes facing us, sometimes facing away, relishing the shared experience. We also appreciate the glee on her face as we bob her and turn her in the water.

The pool at our summer place has provided many hours of fun for our family, but I have become somewhat more hesitant to bring her. The process remains straightforward. We wheel her chair to the top of the pool-stairs, I lift her out and down into the water, I get her to the deeper end. My wife and I pass her between us, changing her position to keep her interested. With her ear close to my lips, I whistle as I do at bedtime. Lisa holds her facing out and they make a game of splashing Daddy. We stay in for thirty or forty minutes and she is peaceful and happy. When she gets cold, I carry her to where Lisa waits to wrap her in a towel, and we settle her back in the chair to dry off. After a short time in the sun, we transport her inside and up to our floor and remove her navy-blue swim-diaper, less absorbent than her usual diapers. It’s a fair bit of work and unchanged with each passing year, but it brings great pleasure.

Years ago, it was easy to bear our daughter up from chair to my arms and walk her down the pool-stairs into the low water. Even at age twelve, she weighed less than sixty pounds. Her mom and I were younger, too. Now, however, Gabriella weighs nearly one hundred and our backs have gotten creakier.

Last year, we saw two other families struggling to get loved ones in the pool, including a young man much heavier than our daughter. We’ve asked about installing a handicap-accessible lift to manage getting her in and out, and will continue to pursue this.

When we’ve traveled more recently, we have sought pools with ADA lifts. While infrequent, we have been able to get her into the water in a facility in Williamsburg and on our cruise a few years ago. And then last week, when my mom hosted a Van Heest family reunion at Mohonk Mountain House, we got her in twice.

The ADA lift offers a chair that starts over the side and ranges out over the water. Some facilities demonstrate the equipment and then turn it over to the family, but Mohonk had their employee operate it. We transferred Gabriella from her wheelchair to the lift-seat, then I lowered myself into the pool and they lowered her until I could receive her. We took advantage of their morning Adult Swim hour when it was less crowded and quieter.

Both times, Gabriella loved the pool. And with the benefit of the ADA lift, I emerged with energy, ready to enjoy time with family in a beautiful setting.

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.

We’re a family that loves to travel, but we’ve found our options limited with a daughter in a wheelchair. Not that we haven’t tried. Over the past twenty years, we have journeyed by plane, by train, by ship and by car.

The three of us flew, only once, before Alexander was born. Our experience was harrowing, from a delay on the tarmac as long as the five-plus hour flight itself to arguments with the French crew about keeping Gabriella in her car-seat, and it put us off air travel. Over the years, I’ve taken hundreds of flights for work, and have seen passenger space shrink, amenities disappear, and frustrations grow. On top of that, other parents have told us stories about carrying their non-ambulatory children to the rear of the plane. We’ve heard about customized wheelchairs being damaged in the cargo hold, stunning news for a person unable to use a loaner chair. Not being able to fly reduces our possible destinations, but it’s a limitation we’ve accepted. At least for now.

We’ve taken the Auto-Train from Virginia to Florida several times. We combine a handicap-accessible berth with a two-person sleeper for the four of us. Lisa, in particular, has a hard time sleeping on the train (which is three-quarters of a mile long and lists when it arches around curves along the way); Gabriella, on the other hand, falls asleep as soon as we put her down, as opposed to the usual 90 minutes at home. And there are advantages. The crew is pleasant and helpful, the Auto-Train gives us access to our adapted van when we arrive and we disembark half an hour from Disney World. Unfortunately, Amtrak only offers the one Auto-Train route.

Last year, we took a cruise. For three days and two nights, we had lots of fun. Gabriella got her usual kick out of being in motion around the ship, she loved the beeping of the elevators, and as on the train, the swaying helped her drift off to sleep at once. Because it was a “cruise to nowhere”, we had no need to debark. Nor did we have to worry about smaller harbors that require traveling to shore on tender boats. We enjoyed our first shipboard experience enough that we are looking forward to more cruises in our future.

Altogether, though, we’ve traveled with Gabriella only five times in 23 years by plane, train and cruise ship together, and it gets harder as she gets older.

As a result, most of our travel has always been by car.

We are on our third minivan, each equipped with a ramp for our daughter’s wheelchair. (Before the vans, Gabriella was small enough for a car-seat and spent her days in an adapted stroller, so we took the stroller apart and stowed both pieces in the trunk.)

Most of the time, we drive to destinations less than three hours away. By timing everything right before we leave, that distance eliminates the need to stop on the way to feed her, change her, or attend to her medical needs.

But recently we plucked up our courage for a longer road-trip.

We went for six days. Another convenience of the adapted van is packing space, which is critical because our demand is enormous. When we examined all we had put aside for our trip, we found than 90% was for Gabriella. This included her pureed food, a full box of her personal hygiene items, and pads for her chair and bed. We also had a week’s worth of eight different medicines plus vitamins. And the medical equipment, the nebulizer for respiratory treatments, feeding pump for hydration and nighttime formula feeds, and pulse ox for monitoring her oxygen and heart-rate. Not to mention all the attendant supplies, such as the replacement sensor we needed when the one on her pulse ox died the first night. Plus the syringes, medicine cups, gauze, balm, nasal saline…

Most of these supplies come from medical supply distributors and are not available at your neighborhood pharmacy, so there’s a lot of pressure in making sure we don’t forget anything. We each have lists and we check those against another list, and then we cross our fingers and say a prayer.

On this recent trip, we reserved a two-bedroom suite, after gaining assurance that the swimming pool had a lift. Because it did, we got Gabriella into the water for the first time in many months. Her joy made it all worthwhile.

Lisa spent weeks in advance ensuring we’d have a hospital bed and a Hoyer lift. The equipment service delivered both the same day we did, but when we arrived we found each was larger than expected. The bed didn’t fit in the second bedroom, which meant all three of us packed into one room. The lift was so bulky it was too tight to use to get her into the bed for a change or for the night. Luckily, we have plenty of experience with two-person lifts and had brought our own back-braces, but we were still both sore by the time we got home.

Gabriella also had seizures the first three days of our trip. As with many aspects of her condition, her epilepsy differs from the norm. In fact, seizures make her less drowsy, not more. As a result, no one got much sleep those few nights. With such an inauspicious start, we both swore we were through with long driving trips. As the vacation went on, though, things improved and we all rested.

We had planned for a six-hour drive in each direction. We decided to go the distance there without stopping, but to split the return trip into two days and stop midway home. When we arrived, however, we discovered that hotel didn’t offer on-site parking and the neighborhood was less than desirable, so after some anxious moments, we left. We do little “on the fly” anymore, but we attempted to find another place for the night. After two more failed attempts at motels – one told us their only adapted room was occupied, the other had none to begin with – we drove the rest of the way.

With the addition of traffic, our total driving time in each direction was eight to nine hours. That introduced another complication, the need to change Gabriella and make her comfortable. We learned some new lessons there as well, which I’ll share elsewhere. And while there were moments where we thought we might never take a long car trip again, we made the most of our vacation, and I dare say there will be more road-trips in the future.

For in the end, we’re a family that loves to travel, me with a book, Lisa with her knitting, and Gabriella with her natural curiosity. And there are too many places we want to see, whether by plane, train, (ship,) or automobile.

This week we took Gabriella down the boardwalk again.

Over the years, she’s gone from being pale-faced and intimidated by the noise and crowds to showing a sense of wonder, laughing at the binging and beeping of the carnival games, watching the people as they pass. As always, she enjoys the motion, but I suspect she also harbors memories of past trips. I know I do.

The most vivid for me started in the usual way. The four of us made our way along the concrete path alongside the boards, centered around Gabriella’s wheelchair. She was younger then, seven or eight years old, and it was summer, so near Alexander’s sixth or seventh birthday. She was complaining, as she often did, more uncomfortable perhaps because of the curvature of her spine and the low tone of the muscles that sagged around it. Even without her whinging, we were a spectacle, and those who walked in the other direction got their money’s worth.

Staring people have always bothered Lisa and me. It wasn’t enough that we felt a little unsightly rolling along; when she complained and we had to shush her and plead with her and pull her over out of the main traffic to soothe her, we became more susceptible to looks and whispers.

The small children never bothered us as much as their older siblings and their parents. There is little excuse for an adult staring at a girl in a wheelchair.

Short of making (more of) a scene ourselves, there was little we could do about it. I’ll admit I’ve stared back, even to the point of craning my neck and turning around to glare at someone who’s gone past us. Sometimes they are still looking in our direction, but just as often they’ve moved on and I’m the one left with a sheepish expression.

At times the staring would irritate her brother as well. “Why do they have to stare?” he would demand. How do you answer that?

On this particular evening, we rolled up the boardwalk, trying but failing to ignore the prying eyes. It was warm but not oppressive, busy but not mobbed. I remember Gabriella’s whining and Alexander’s frustration, and we considered turning back. We had stopped in front of one of the many attractions promising prizes for skill.

That was when a small girl with a blonde ponytail approached, holding her mother’s hand. She presented herself before Gabriella’s chair and, with great pride, handed her a stuffed animal. Our daughter reached out an arm but was unable to grasp the plush toy, so Lisa accepted it from the girl. “She won it,” her mother said. “She wanted your daughter to have it.”

From the time she was a baby, many people have given Gabriella gifts, a lot of them strangers, from children to young men to elderly women. She’s received religious medals, a friendship bracelet, dolls and stuffed animals. The memories blur with one another, the different givers and gifts centered on the deep gratitude we always feel. I’ve noticed that the giver often has an awestruck look that makes me wonder whether they’re getting even more from the exchange.

But of all the gifts she’s gotten, that stuffed animal on the boardwalk is the one I most remember. Time froze for an instant, then the child, her bravery expended, turned into her mother’s knees. As they walked off together, I got the sense that people were staring again, but I couldn’t see them as clearly this time because of the tears in my eyes.

As we pushed Gabriella along the boardwalk this week, I recalled again that girl, forever bound to our daughter by her act of courage and generosity. By now she’s a young lady, and whatever path she takes in life, whether as a mom or a teacher or a leader or a citizen, it cheers me to know her influence will fall upon others.