I made the sign of the cross each time the car pulled out to pass. I don’t normally expect God to get me out of situations that I have freely gotten myself into. Nor am I particularly close to my Catholic roots. But Jesus watches from on top of a hill in every town in South America, evoking my childhood fear that one day I will have to explain how I got myself into this mess. Maybe that day was today.
It was the dry season in Bolivia. The dirt road had turned to a red powder. Each time our little car pulled out to pass one of the slow moving trucks that billowed out a dust storm, there were several seconds when visibility was zero and my heart would stop. Meeting a oncoming vehicle in those few seconds would mean certain death.
It was one thing to take a risk for my own relentless pursuit of adventure but my husband sat beside me in the back seat, both of leaning inward, and my children were riding in the car behind us.Their car would disappear in the dust for a few minutes at a time. I would let out a sigh, or perhaps more of a gasp, of relief when they reappeared through the back window.
I imagined them in the back seat: our 19 year old son Devin and our 16 year old daughter Kasenya. Devin with his arm behind Kasenya’s shoulders to keep her from falling over. Kasenya has Cerebral Palsy. She isn’t able to walk or sit on her own or even hold her own head up very steadily.
I was sure they would be oblivious to the peril of this situation. Petite little Kasenya looking up at her very tall brother: the two of them laughing and telling stories.
I looked over at my husband David. As usual when things got tough, Dave was the one who wore the brave face. I was the one who would collapse into a chair and sob. But once during a picnic with another family, who had three little girls about our kid’s ages, Dave made an abrupt excuse and signalled to me that it was time for us to leave - now. I gathered up our paper plates and quickly repacked the cooler while he put the kids in their car seats. As we drove off he said “I’m sorry, it was killing me to watch those girls running around when Kasenya can’t.” Now, the calm on his face was reassuring. It would be ok. Maybe today was not my day to meet Jesus in person.
Devin was my excuse. I was thrilled when we had just gotten back from a trip to Australia and Devin declared that his goal was to visit all 7 continents - while his Dad and I were still paying for it. I was proud that he had inherited a sense of adventure. He was 12 and even though he could fully understand the challenges that our family faced, it hadn’t jaded his enthusiasm: he didn’t see any reason at all why a wheelchair would prevent us from traveling.
I needed Devin to know that he was right, that there was nothing that couldn’t be overcome. And I needed Kasenya to know that too.
Having a child with a disability was a detour. I could feel my face flush when people asked if we brought Kasenya when we travelled. They would NEVER have asked that about Devin. She had the right to everything that Devin had in life - including travel.
Cerebral Palsy has its degrees and Kasenya’s is severe. Although some kids with CP are cognitively affected, Kasenya isn’t. So it wasn’t just about dragging her around so we could tick off a list of continents and make a point. There was no medical reason why Kasenya couldn’t travel. It was just harder for us.
I am the one who sees only the opportunities - sitting in the comfort of my home in the planning mode. Dave is the one who deals with the obstacles once we are already in the middle of them. And I hate detours, they are so inefficient.
Our flight between Peru and Bolivia had been cancelled. The only way to get there was by bus - two days on a bus. Detours make me squirm on the inside. Trying to think of ways to fix this problem: like an itch I just couldn’t scratch.
We were sprawled out on the hotel beds, listening to music or checking our email when Dave got back from the bus station.
“I got us onto a tour bus” he said “Not a local bus. No chickens on the bus. It stops at a few sites and even includes lunch. It won’t be so bad”.
There are many things to be learned from travel: patience, problem solving, being part of a team. When things go wrong, as they inevitably do, the lesson is that you may be in foreign territory but you can figure it out. Two days on a bus through the mountains of Peru and Bolivia was certainly a lesson in patience. It also forced us to slow down.
The bus wound its way around Lake Titicaca. It stopped in a town where it was market day. Women dressed in their traditional clothing sat beside their commercial scales, surrounded by huge piles of alpaca and lama skins. There was something soothing and meditative about the long flat drive across the Altiplano which looked like a moonscape.
The bus ride forced me to slow down. It gave me time to reflect on how some of the most memorable moments had not taken place beside the Pyramids of Egypt, or Angkor Wat in Cambodia or even at Machu Picchu in Peru. Looking over at my kids, asleep in their seats on the bus, I realized that the most amazing thing was being in all of these places together and now here we were in South America - our sixth continent.
We had always said that “Where ever a wheelchair can go, Kasenya can go” - even if we have to push pull drag and carry it, which was what we had often had to do. On the stop after the first day of travel, Dave had found us a “wheelchair friendly” hotel. That meant that the friendly guy at the front desk would help you carry your wheelchair up the stairs because there were no rooms on the main floor and no elevator.
Having a kid in a wheelchair was also a detour that also forced us to slow down: to appreciate small accomplishments to see the things that most others don’t ever see or appreciate.
We had taken risks in our travels and not all of them had worked out. We new we were taking a risk by going to the Bolivian pampas in the Amazon basin. We thought we were risking disappointment if Kasenya couldn’t be accommodated properly because of the wheelchair. We didn’t know we would be risking our lives in the car ride to get there.
When the cars finally arrived beside the river we knew immediately that the risk had be worth it. The small flat boat that waited on the shore for us, had a platform on the front. The waters on this tributary of the Amazon were calm. Kasenya could sit in the front of the boat with a completely unobstructed view.
On the trip between the dock and the lodge, the pink dolphins started to put on a show. The water shimmered with the reflection of the sun which was now low in the sky. We stopped to watch them playfully jumping out of the water and made a game of guessing where they would emerge next.
We spent the next four days gliding up and down the network of small rivers that surrounded our lodge. We saw several kinds of bird including macaws along with monkeys, porcupines, bats, turtles, dangerous looking caimans which look like crocodiles and which our guide assured us are vegetarian. We even saw the elusive capybara, the larger cousin of the guinea pig. Our guide joked that the frog that lived in our toilet was a bonus.
Sitting on the porch of our cabana with Devin one evening I said “I’m sorry our life has been such a gong show”.
He thought for a moment and said “I don’t know of any family who has done as many cool things as we have”.
Safely back in La Paz, (the capital of Bolivia), a few days later, I looked up at the huge white statue of Jesus on the hill. What I saw was a man, standing with his arms opened in love and embracing the whole world as if to say: all of this is for you.
Reflecting on my life, my challenges and all of the things I had to be grateful for, I whispered “Thank you. Thank you for all of it”.