In early October, my parents, brother, and I arrived at Saint Peter’s Basilica. My mother and I had begun our walk in Lausanne at the end of August, a week after I retired from a 20-year career in the U.S. Navy. After clearing the Col du Grand San Bernard in early September, we rendezvoused with my dad and brother in Aosta to continue the pilgrimage to Rome as a family. For me and my mom, it had been a 44-day adventure.
Our fellow pilgrims and the townspeople expressed surprise whenever they saw the four of us together. Most Via Francigena pilgrims traveled solo or in pairs. Those who traveled in pairs were far more likely to be friends than they were related by blood or marriage. We were the only family on the road, which was unusual.
Even more unusual was the fact that my youngest brother, 17-year old Dan, has Down Syndrome.
Personal Challenges
I’m curious as to whether Dan is the first pilgrim with Down Syndrome to walk over 400 miles of the Via Francigena. I was 24 years old when he was born, the youngest of my seven siblings. When I first learned of his condition, I sobbed with self-pity over all the experiences we were bound to miss out on in the future.
The first time I held him in my arms I was stunned by how floppy he was. Holding him was almost like holding jello. As is typical of infants with Trisomy 21, he had decreased muscle tone. His fine motor skills took much longer to develop.
As he grew, I came to respect and admire Dan for his strengths. He was thoughtful, kind, generous, and tough. Everything he did, he had worked hard for.
Traveling on the Road
The fact that we had put little thought as to how well Dan would adjust to life on the Via Francigena was not because we did not care. Rather, it was because we found him to be so capable it seemed a foregone conclusion that he would be just fine. Dan went on every family trip; there was never any talk of leaving him behind.
Alas. My dad’s and Dan’s introduction to the Via Francigena fell on the 19-kilometer segment between Chatillon to Verres. Almost every guidebook characterized this mountainous section of continuous ascents and descents as “very challenging.” After eight hours of rigorous hiking I looked at the bewildered expression on my brother’s face. All I could feel was remorse at what a foolish idea this had been.
He was using hiking poles for the first time, hesitatingly, as though doubtful such thin rods could sustain his weight. Like all of us, he carried a 16-pound pack, and his hair was plastered against his face.
For the final two kilometers, I grabbed his backpack and added it atop my load. Much to my horror, I felt resentment at carrying two backpacks. Resentment over the thought that after today we would have to modify our future plans if we hoped to continue. But above all, I felt guilt. Why hadn’t I given more thought to Dan?
Things got worse. We finally arrived at Verres to discover there was no lodging. There was also no availability for the two towns after. We wound up taking a train off-trail to Torino. Two days later, he and our mom caught a nasty case of gastritis.
The gastritis posed a serious problem. One pilgrim friend who caught it had symptoms so severe that she had to cancel her journey and return home. I had serious concerns as to whether our family would need to split up and take trains to continue. Thankfully, almost as soon as we caught the trail again, things improved considerably.
From that day forward, Dan carried his own backpack. Within two weeks, he was matching me stride for stride and working his walking sticks like a pro. And, without me modifying my stride, he kept pace. Whenever I turned around, there he was – grinning. By the third week, the two of us split off from our parents during the day to hike together. Part of it was because he enjoyed eating pastries and gelato. And part of it was because, as he said, he “liked to walk fast.”
9 Reasons Those With Down Syndrome Make AWESOME Pilgrims
Those who are fortunate enough to know someone with Down Syndrome will tell you with utmost sincerity that they possess uncommon skills and traits. Although there is a wide spectrum, people with Down Syndrome seem to exhibit many of the same attributes.
Here are nine reasons why Dan was one of the most popular pilgrims on the trail.
1. They never express self-pity
Is there anything worse than someone whining about how hard something was? Did their limbs get chewed up by hordes of mosquitos in the Mortara rice fields? Did they spend hours hovering over a toilet after a nasty bout of pilgrim gastritis? Find a half-dozen snake carcasses in the woods? Walk 10 hours under a scorching Italian sun? No matter how brutal the conditions are, he did not complain.
2. They’ve got the best sense of humor
People with Down Syndrome tend to have a great ability to laugh. He giggled when we realized I had inadvertently gotten us HORSE to eat at a Sicilian street fair in Pontremoli. (I hadn’t bothered to ask what the protein was; the grilling meat had simply smelled good.) I heard his quiet chuckles again when he watched me dive repeatedly into blackberry bushes to avoid a careening Italian car.
3. They are patient: when things get rough, they keep calm
Even the most prepared pilgrim will find that plans can quickly go awry. Private rentals can arbitrarily cancel bookings, and we were surprised at how many times we had to bypass a town because there was no lodging available. When the unexpected hits, a person with Down Syndrome is not the one freaking out. They don’t sulk, they don’t throw a fit. They are wonderfully drama-free.
4. They want to be treated exactly like everyone else
The pilgrim lifestyle tends to be quite regimented. And in ospedales and convents, pilgrims are treated the same. Dan thrived in this system. He made his own bed with the linens provided, and carefully stripped it for washing the following day. He washed his own clothes in the sink and packed and managed his own bag.
He also participated in every communal event, including pilgrim dinners. Pilgrim dinners tend to be multi-national, multi-lingual affairs. He might not understand the language, and he might stay quiet at dinner unless asked a question. But he loved being included.
5. They are incredibly resilient
I remain in awe over how quickly my brother rebounded from a difficult cold-start introduction to the pilgrimage and a fierce bout of gastritis. I pulled him aside privately to ask if he wanted to take a train ahead for a rest day. The answer was always the same: he was fine. He liked walking.
6. They are detail-oriented
From the time he was a toddler, I was struck by how extraordinarily organized Dan was. He was far tidier than I remember any of us ever being. It’s in my nature to double-check a space before departing. During his several weeks on the road, Dan managed his own packing and never forgot a single item.
7. They are up for an adventure, and comfortable trying something new
It goes to show how much I still had to learn that it took me several days to realize how adventurous Dan was. He was the first person to use the rope apparatus to cross the rocks on the River D’Elsa. His sense of adventure was not limited to physical challenges. Much to my surprise, Dan was a serious gourmand whose love for local dining quickly made him my favorite dinner date. He would ask me to translate the menu and listened attentively while I read out the options. I was surprised by what he was comfortable trying. In a place where pizza and pasta reigned supreme, he asked for dishes such as wild boar with fava beans and rosemary.
8. They’re low-maintenance
Almost every pilgrim who carries their own luggage is living a pared-down minimalist lifestyle. There’s no room for anything that is not essential. Once in town, certain luxuries are few and far between. There might not be Wi-Fi or TV. There’s not always a full roll of toilet paper. They might have to wash their hair using kitchen dish soap. That’s not a problem. A person with Down Syndrome takes each day as it comes.
9. They are grateful
By that same token, Dan was incredibly appreciative when he DID see something he recognized as a luxury. A thick, full-length towel. A washing machine. Air-conditioning. A pre-made bed with pillows. A Coke with ice in the glass. A mid-morning cappuccino and brioche. A person with Down Syndrome does not lament what is not there. They see what IS there. And they openly express gratitude for it.
Surprises
Having lived in Italy several years ago, our parents and I understood and could converse in Italian. Dan did not understand the language. However, that was not a problem. His super-strength was reading body language and social cues. Even so, I was startled by just how quickly he understood the Italian culture and which words to use in which setting.
“Ciao, Daniel!”
“Buongiorno! Ciao, bello.”
Another surprise was discovering the extent and speed to which he was comfortable facing his fears. As a young boy, he had a fear of heights and uneven or gapped surfaces. Given that portions of the Via Francigena are along narrow ridges and wooden bridges, we had been concerned that might be a problem. Within mere days, he was walking confidently on all surfaces. He was also brilliant at following directions. A simple – “Hey, Dan, the drivers here are really crazy. You need to stay as close to the inner edge as possible” – was all he needed.
He Made Me a Better Pilgrim
I’m grateful for the blessing of walking with my family. Frankly, I’m also envious of my brother and his seemly effortless cool. The qualities he naturally possesses are the ones I’ve struggled for decades to develop, and which are still a work in progress.
Some of the best lessons I got on the pilgrimage came courtesy of my youngest brother. He was courageous. He accepted whatever came with grace, humility, and a sense of humor.
The fact that Dan has Down Syndrome brought out the best in people. It was not a disability, so much as a blessing to the rest of us. I know I am a better pilgrim for having walked with him.
👉🏻 Would you like to read more about Katie and Dan’s family adventures along the Via Francigena? Then make sure to check out Katie’s Sea Leg Adventure blog!
