“Why we walked the camino with our three kids? We would like to say that the greatest stimulus came from Joelle (3), our youngest, who has down syndrome. Thanks to her, we learned that dreams must be built and lived with the same intensity and commitment as all the other essential things in life. We also learned to take action instead of waiting for opportunities to fall from the sky. The camino is an example of something important to us. So we did it.
In 2008 we completed the Camino Frances, and in 2009, the Camino Portuguese by bicycle as an engaged couple. We intended to pass on to our children the fantastic experience we had fourteen years earlier. We saw it as an excellent way to consolidate our relationship with our children. It was about spending quality time with them, away from the daily distractions of electronic games, television, parties, courses, appointments, routines, and our work.
We wanted to slow down and immerse ourselves in the spirit of the path. On foot, you live in essentiality, without special needs apart from the primary ones such as eating, drinking, resting, and enjoying what is around you. Also, you truly experience the joy of meeting others and connecting with them on a deeper level.
We waited for our first two children to be old enough to walk on their own and for Joelle to not be too heavy to no longer fit in the child carrier on my back. When we announced our plans, others didn’t always share our enthusiasm. We received a lot of questions like: “Isn’t it too difficult for the kids?” “Won’t the children get bored?” “But Joelle can’t walk that much” “Does she have to be in the backpack that long? Do you at least let her walk every now and then?” “And if it rains, what do you do? And in the heat, the children may suffer.” And this is just a short summary. We got many other questions. Especially the questions concerning Joelle were a further motivation for us to break the prejudice surrounding down syndrome.
I patiently answered all their questions, but most could be answered with the same reply: “With good planning, you can overcome most difficulties.” Mia and I have been sailors for more than 25 years and are used to this mindset. You cannot start a sailing trip without checking the winds, waves, tides, distances, meals, water, equipment, and fuel. We already had experience with our children on a sailboat and experienced no difficulties. And if you think about it, the same applies to the Camino.
When people ask us if walking with the kids, particularly with Joelle, requires special preparation, the answer is; ‘no’. From an early age, we have been hiking with the children. When Joshua, our eldest, was barely a month old, we bought a small camper. Since then, we have spent weekends or short vacations walking. Back when they were babies, we carried them in a baby wrap. In the following phase, we took them in a child carrier until they could walk independently. Joelle will need more time to reach this point, but we are not in a hurry.
For our 2022 Camino, we trained during the Christmas holidays along the Cinque Terre trails in Liguria [Italy]. There we tried the shoes, the backpacks, and the endurance of the children to cover long stretches with elevation changes. For this reason, Joelle was used to being carried in the child carrier. It prepared me to walk with the weight on my shoulders. This was necessary because the goal was to complete the most demanding stages, like the one in the Pyrenees, especially the one from Auberge Borda (Orisson) to Roncesvalles.
We preferred to plan the stages not exceeding 15 to 17 km per day. Therefore, we had to book the accommodations in advance. We alternated between private rooms and municipal hostels, allowing our children to enjoy the occasional comfort zone with just the family. We often booked 4-bed dormitories for the five of us and let Joelle sleep in the bed with us. We have also deliberately inserted stops in the villages equipped with a municipal swimming pool for our children to have fun afternoons. During breaks, such as breakfast, snack-time, and lunch, we looked for playgrounds for the children to run and play. This was especially important for Joelle, who spent many hours sitting in the child carrier on my back. The energy to play, even after long stages, was never lacking. At the end of the day, we often finished with premium ice creams.
The first stages were the most difficult. Still, after a while, we managed to get into the rhythm and spirit of the Camino. We got up around 5:30 a.m. and arrived at our destination no later than 1 p.m. for afternoon rest and recreation. We realized that the kids got distracted by having many meals, telling fairy tales, inventing games, and listening to music. Then we managed to arrive at the endpoint in harmony.
From a physical point of view, we have not encountered great difficulties. Joshua and Noah have always carried their backpack with great autonomy. Mia packed her backpack with my stuff and her own things. Joelle and her stuff filled the child carrier on my back, which weighed about 23 to 25 kilos. Fortunately, we had no major foot problems except for some pain in the soles of the feet from the weight of the backpacks.
Just because we don’t let challenging conditions hold us back doesn’t mean we were never worried while walking. The stage we were most concerned about was also one of the most beautiful experiences of the Camino: the Pyrenees. Its sudden climatic changes – fog, rain, wind, sun, and heat – gave us moments of total solitude and contact with nature, but also unexpected friendships. We discovered that in overcoming challenges, there is often a reward. I realized that in life, we shouldn’t worry too much about what awaits us, the unknown. There is always something beautiful waiting for us.
This all sounds very idyllic, but believe me, there were moments of despair, especially during the last hour of the long walks. Sometimes the kids just crashed. It was then nearly impossible to get them moving again. After a while, I understood it was due to mental rather than physical fatigue. My wife and I started telling and reinventing stories to distract them. When I changed the ending of the story of “Little Red Riding Hood” and “Three Little Pigs,” the boys forgot the difficulties and started laughing and walking simultaneously. We applied many other strategies, such as counting steps, thinking and solving math problems, walking backward hand in hand, and singing. I also made up many jokes with Joelle, not to distract her but more as a good way to pass the time. She spent hours caressing my head or giving me small strokes with her head on mine. We played a kind of hide-and-seek game: she whispered something in my ear on one side, and as I turned my head, she hid on the other. Sometimes we ran with our arms spread like airplane wings and made all kinds of noises. But we also sang funny songs and took wonderful naps!
We stood out quite a bit during the camino as a family with young children. News of our journey had spread among the pilgrims. It was exciting to meet pilgrims who exclaimed: “Are you the family with the three children? Are you ‘A Spasso Con Tillo’ [Walking with Tillo – Tillo is Joelle’s nickname]? We were very impressed by the love we received from everyone we met. It even got to the point where some pilgrims were waiting for us along the camino or at the end of a stage. They walked with us and bonded with the little ones, telling stories and singing songs.
We encountered all kinds of reactions, but most people were impressed. More than once, a father stopped us for a picture. They send it home, telling their family, “You see, we can do it together too!”. In a bar in Roncesvalles, a group of Pilgrims stood up and exclaimed, “You really did it!?” They joined our table to talk about the difficulties we faced and how we dealt with them. At the end of the first part of our journey in Los Arcos, a pilgrim asked for our names and said he would pray for us when he arrived in Santiago. An Italian girl dropped colored heart-shaped stones along the path for our children to motivate them to look for them while walking. We are still in touch with many of those wonderful people, and we already feel like we are good old friends. And I must admit that all these positive reactions have further confirmed and strengthened our determination to continue the Camino.
Besides the new friendships with fellow pilgrims, we bonded on a deeper level as a family. It was precious. We learned to know our kids better, starting from their characters, emotions, and difficulties they encountered. This helped us a lot in our relationship with them. We had quality time together, unlike when you come home tired from long working hours and still have to think about household chores. I noticed a growing brotherhood between Joshua and Noah. They spent hours walking a few hundred meters behind us, talking and laughing about who knows what. They also became more independent and less shy with strangers, such as asking for the restroom or buying something for themselves. As a direct result, our trust in our children improved.
I learned a lot from our kids on the camino. They are like mirrors because they reflect our behavior. In everyday life, my wife and I try to look at our family objectively. We look at ourselves as if we were strangers and try to judge our actions and behaviors. During the Camino, we found more time for that and learned a lot from our children. I have learned to respond more flexibly to changes in a schedule we have discussed and approved beforehand. During the Camino, things changed very quickly, primarily due to the children’s needs. I learned to adapt to such changes. Thanks to Joelle, I have learned so much about the world of “diversity” previously unknown to me. I learned to be more patient, not judge people too quickly, be more open-minded, and see the positive side of things. She changed how I interact with others, especially how I look at and talk to people with disabilities. And I’m still learning. It was a real wake-up call in the middle of my life, but it opened my eyes!”
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Josef and Mia created a social media account that follows Joelle’s adventures: on Instagram (@a_spasso_con_tillo) and Facebook Page: “A Spasso con Tillo”. Our main purpose here is to show how it is to live with Down Syndrome, to make people aware of this condition, and to dispel myths and preconceptions around it.