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.