After Gabriella got her Panda adapted stroller, getting around became more complicated. While the Panda divided into two pieces, both were heavy and unwieldy and they consumed the whole trunk of our car. She still weighed less than fifty pounds then, but loading her and her equipment in a parking lot was overwhelming, and more so for one person. The time had come to buy an adapted minivan.

We didn’t care for minivans, but many of our friends with children drove them. We also knew our daughter would someday move to a full-size wheelchair and a ramp would become crucial.

This was 2001 and we had to figure out how to navigate the conversion process. (It’s still complex.) Only a few dealers in New Jersey sold adapted vehicles. Once we purchased a van, the dealer would ship it to one of several companies in Michigan and Canada. The adaptation would take between six and eight weeks and cost $25,000, on top of the price of the minivan.

Perhaps our most important choice concerned the location of the ramp. Rear-entry models were newer then, but came only with Chrysler and Ford vans. The more established side-entry conversions featured more carmakers.

How to decide?

We took our daughter to the Abilities Expo, a convention where vendors exhibit a wide range of equipment for people with disabilities. It’s become an annual sojourn, enabling us to try out many of the implements we’ve bought over the years.

Because several dealers were showing converted vans, the Expo offered more models and perspectives than we could have gotten visiting showrooms. We wheeled Gabriella into each vehicle and sat in the rear seats (often the second row in an adapted minivan adjusts out toward the doors or replaced with less comfortable buckets). We noticed distinctions like the incline of the ramp and the visibility from the driver’s seat.

Our normal activity also informed our decision. We do less parallel parking and frequent lots without available full-size handicap-spot, so we concluded the rear-entry format would be more flexible. We ordered a Dodge Caravan.

Our conversion offered automated access, with a single button that lifted the hatch and lowered the ramp. It was a new Canadian design, and we were among their first American customers.

We also had to get Gabriella from inside to the new van. None of our exterior doorways offer access without stairs, so we hired a carpenter to build a ramp on the opposite side of our two-car garage. His ingenious design split into three distinct sections, each latched to the wall but folding down into place. This allowed us to keep our other vehicle in the garage.

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A few months after we received our converted Dodge, we took our first family vacation to Disney World. As we did on our recent trip, we went by AutoTrain from Lorton, Virginia. We were within a few miles of that station when the van idled and then died.

At once we asked ourselves: had buying the newer conversion been a mistake?

I pulled to the shoulder of the highway and got it started again, but it soon failed again. After an anxious period, we coaxed it to Lorton and made it onto the train.

After arriving in Florida, I brought it to a Dodge dealer. When they raised our car, they said they had never seen such a ‘chop-job’, and that the conversion made their diagnostics more difficult. Again we began to wonder. When they couldn’t find anything wrong, we became nervous every time we loaded into our van while in Orlando. We held our breath, but it gave us no more trouble on that trip.

It became as reliable as one might expect from these vehicles, recognizing that for all the expense, they don’t last as long as unadapted vans. The adaptation included cutting and soldering the pipes beneath the van, which led to problems with the exhaust system. And the added weight of the ramp construction stressed the wheels and we had to replace our tires more often, another common problem.

Yet it met our needs. Before long it was time to replace the Dodge, and we knew we had no choice. We needed another adapted minivan.

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Upon returning to the Abilities Expo, we learned that our conversion company had become more refined in the years since we bought our Dodge. We went with them again, choosing another Chrysler.

Our friends have long since moved on from minivans but we haven’t, and at times our vehicle feels like a symbol of our different status. But we maintain hope that someday we and our twenty-something daughter will graduate from the ranks of ‘minivan families’. At the last couple of Expos, we have discovered a growing selection of cars and SUVs available for adaptation, although most are too small for our needs.

In the meantime, we count on our adapted minivan to open new horizons in our lives.

Soon after the final pathology report, Lisa suggested we take Gabriella to Lourdes. Our daughter was little more than a year old when she had the tumor excised from her skull, with the frozen section indicating the growth was malignant. After an excruciating wait, we got the diagnosis we prayed for. It was benign.

It had been an exhausting sixteen months. We were relieved and thankful. After the Level II ultrasound, we were optimistic as well about Lisa’s second pregnancy, which was about halfway along.

We would take a pilgrimage to the holy city of southern France.

We chose Air France, in part because they guaranteed a bassinet on board the plane. In Paris we would transfer to Air Inter, their subsidiary for trips within French borders, for the connection to Tarbes, a short drive from Lourdes.

On the day of our departure, we went to JFK. An Air France representative met us at the registration desk and assured us everything was as planned. When we boarded, however, we discovered that the bassinet we’d reserved was broken. We told the stewardess we had counted on having a place to stretch out during the flight. “It ees not possible,” the stewardess said with a girlish shrug, not the last time we would hear that charming expression.

Fortunately, we had purchased a third ticket for each leg to ensure our daughter could take off and land in her car-seat. Lisa gave her Benadryl and brushed a quick sign of the cross.

After a while I asked, “Why aren’t we going anywhere?”

Then the pilot’s voice came over the loudspeaker, first in French, then in English. The flight would be delayed for up to an hour.

By shifting her between the car seat and my arms and Lisa’s and a blanket we stretched across two seats, we kept her quiet for that hour. And for the one that followed. One announcement led to another, with the third inviting passengers to get off the plane and wander the airport. So far, however, Gabriella remained calm, so we stayed put.

At last we took off. We had spent five hours on the tarmac, during which Gabriella remained quiet. But by the time we crossed over Boston, the Benadryl had worn off and her patience vanished.

She cried and screamed and complained the entire flight. We were frustrated and embarrassed. I remembered my own annoyance on airplanes when parents couldn’t prevent their baby from crying. Now that was us. It was everything I’d feared about air travel with our daughter, and it has put me off flying with her ever since.

We landed at Orly with a groggy sense of losing our way. Instead of getting in after midnight, our flight landed in early morning, and we had slept little. We also missed the last connection of the day to Lourdes.

Many people have nightmare travel stories, and this was ours. We worried about where we might stay without that connection, for the Ibis Hotel we had reserved included a refrigerator to chill our daughter’s formula. The airline said they could get us to Pau, another nearby city. We collected our bags and staggered through the airport, then caught the shuttle for De Gaulle, from which the Pau flight would leave. We barely made it and three attendants waved us through. Maybe they were impatient with our tardiness, maybe we just felt wretched by this point.

We got to our seats and fastened our belts and secured Gabriella’s car-seat. She was tired, already whining.

Then the steward came over to us. “You must hold the baby,” he said.

“That’s why we paid for the third seat,” I explained.

He shook his head. “It is French law,” he said. “The baby can not take off in seat. Mother must hold her.”

“She took off in this car-seat on the flight from New York,” I said, incredulous. “That was Air France.”

“It ees not possible.”

“We can’t take off with her unbuckled,” Lisa said. “It’s not safe.”

The steward had been conferring with a stewardess not ten feet away, and now she approached. “In France, the child takes off and lands in the mother’s arms,” she said and smiled at me. “Or the father’s.”

We refused. Tense minutes passed before the pilot or co-pilot came out. He again explained the French law.

“Look,” Lisa said. “We’re going to take off with her in her car-seat. If someone wants to arrest me when we land, that’s fine, but I’m not risking the life of my daughter.”

It occurred to me this was the defiance of a mother, a quiet strength I could only admire.

At last, the pilot nodded and they backed down.

We landed in Pau and no one hassled us, but they seemed glad to see us deplane. After a lengthy discussion at the Avis counter, trying to explain why we were seeking a rental there and not in Tarbes, we reached our Volkswagen Golf Twingo. There was just enough room in the “trunk” for our suitcase, but we squeezed bags of formula and baby food into the front passenger side and affixed Gabriella’s car-seat in the back.

We set off for Lourdes, but every time we approached the route out of Pau, we saw the same landmarks. Could that possibly be the riverfront, again? Gabriella, exhausted from the trip, arched in her car-seat. She wanted nothing more than to lie down with a bottle to her lips, not sucking but only mouthing, a warm wet pacifier. Finally, we found a gendarme and got directions to the National Highway.

We reached our hotel in Lourdes in late afternoon. The room was spartan, with the double bed and Gabriella’s cot leaving a six-inch margin of hardwood around much of the perimeter. “Where’s the refrigerator?” I asked, dread setting in again.

I descended to the lobby. The desk clerk smiled back at me. I explained that we were supposed to have a refrigerator. She said they had no refrigerators in their rooms. “We need it for the baby’s bottles,” I said.

She shrugged. “It ees not possible.”

After a while, she offered to store the bottles in the refrigerator of the hotel bar. We accepted with gratitude.

After a room-service meal, we all fell into a deep sleep. Gabriella woke up hungry in the middle of the night. I struggled into clothes and headed back to the lobby, dreading the inevitable message. But not this time. A young man fetched our bottle bag from the refrigerator.

By noon the next day, we were ready to venture out to the holy site. It was a comfortable walk to the shrine and the grotto, and we had the stroller. But it had started to rain, hard, and everything we had come for waited outdoors and unsheltered.

After much deliberation, we squeezed back into our Twingo and drove to the Information Center. It was closed until two o’clock. And the rain picked up.

We parked in a garage a few blocks from the center. When we reached the surface, the weather was unrelenting. We opted to wait it out, but Gabriella grew cranky, whining, complaining. We returned to the car and drove back to our hotel.

My nerves frayed. I wondered whether we would ever reach the holy site. I wondered if I cared any longer.

To be continued…

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.