“Our kids are going blind, so we’re taking them around the world”

When my daughter Mia was about three years old, my husband Sebastian and I realized that something was wrong with her vision. At night she would get up and start bumping into furniture or walls. When I handed her the things in the dim light, she couldn’t see them. She was our first child so at first we didn’t realize it was a problem, but after a while I realized something was wrong.

I took her to an optometrist who referred us to a thermologist and an ophthalmologist. The tests came back negative – they didn’t know what she had. It was four years before we got a diagnosis.

Mia was seven years old when she was diagnosed with retinitis pigmentosa, a degenerative disease of the retina. My husband and I have four children – Mia, who is now 11 years old; Leo who is nine; Colin, who is seven years old; and Laurent, who is five. Mia, Colin and Laurent are all affected by retinitis pigmentosa.

Our children’s learning will lose their eyesight

The condition means that the cells in the retina are slowly dying off, so three of my children will slowly lose their outside-in vision; it will be like looking through a straw. The experts don’t know how long it will be before my children lose their sight – they can’t predict it and it could vary from child to child. It seems pretty slow – my kids have really good vision during the day, but they’re essentially blind when the light is low. While there is a chance they will retain some of their field of vision, they are expected to be completely blind by midlife.

Our first reaction to the diagnosis was disbelief and shock. When you have children, you have an idea of ​​what their future will be like, what your life will be like, and suddenly you have to reconsider all of that. It’s a grieving process: at first you don’t believe it, then you get angry, you look everywhere for answers, you get sad. But after a while you just have to accept it. Only when you accept it can you move on.

I thought it best if Mia found out about the diagnosis right away. I didn’t want to hide anything from her and annoy her afterwards. I told her soberly that when she grew up she would probably be blind due to her eye problems. She thought for a moment and said, “Oh, that’s no fun.” That was the extent of her reaction. A few days later, she said, “Mom, I think I have to keep my room clean because once I lose my sight, I have to find my things, so they always have to be in the same place.” After that, I saw her a few times , trying to get from one room to another with her eyes closed. I was reassured that she understood what was going on and found solutions on her own.

The two little ones have heard about it since they were too little to understand that the three of them will lose their sight. What I didn’t realize was that the little one, Laurent, didn’t really know what it meant. In August we were in the car and he looked at me and said, “Mom, what does it mean to be blind?” and I realized that he knows, but he doesn’t understand. So I told him it was like keeping your eyes closed the whole time. Of course he’s five, so after that he started asking a billion questions like “How am I going to cross the street?”, “How am I going to drive?” and “Will my wife be blind?” I said there were solutions and told him it wasn’t a problem, but inside I was devastated.

If there’s a problem I’m happy to jump into action, but the thing about diagnosing is there was nothing I could do. That was really hard for me.

I started thinking about what I could do and thought it would be a good thing for my daughter to learn braille in school so that she can keep doing it when she loses her sight. But specialists at her school said they didn’t have all the resources and their eyesight was too good to learn Braille properly. They said the best thing would be to fill her visual memory, to put as many images in her head as possible – for example, looking at elephants or giraffes in a book, so that when she is blind she can refer to those images.

Decided to travel the world to create visual memories

Then it clicked. I was like, let’s go and show her elephants and giraffes in real life – that way she’ll really remember it. Sebastian and I decided to quit our jobs in Montreal, Quebec, Canada and travel the world with our kids. We wanted to fill their visual memory with as many beautiful things as possible.

We were planning to leave in July 2020 and had a nice itinerary planned – we crossed Russia and went to Mongolia and China. But of course that didn’t happen because of the pandemic. The next two years were a waiting game, and we had to keep recreating our itinerary. We ended up checking which countries are open and booking a ticket to Namibia where we flew with no itinerary in March 2022.

From Namibia we went overland to Zambia, Tanzania and as far as Zanzibar. In July we spent a month in Turkey, then we went to Mongolia for six weeks and flew to Bali, starting our two months in Indonesia where we are now. We don’t know exactly where we’re going next. We don’t really have a set itinerary: we usually plan a month in advance. So after Indonesia we will probably go to Malaysia for a while and as far as Thailand, Vietnam, Laos, Cambodia, but we don’t know exactly how and when.

Everyone in the family had a favorite spot. I think Mia’s favorite pastime was horseback riding in Mongolia; As she got off her horse, she was tearful and emotional. It was a great experience for her. Colin loved the 24-hour Tazara Railway train journey across Tanzania because he was dying to sleep on a train. Leo’s favorite moment was Kilimanjaro; We did a little hike at the base of the mountain and the vegetation was amazing – it was foggy, like a jungle.

I think Lauren’s best moment was when we went on a hot air balloon ride in Cappadocia. We got up before sunrise and walked through a really dark field. We couldn’t see much and suddenly a large hot air balloon filled up. It was like a giant lantern going up around us. We told the kids we couldn’t afford to ride in a hot air balloon but they were excited to see them take off. Then we told them we were actually flying in a balloon and they were so excited. We boarded the hot air balloon and it slowly rose as the sun rose in the valley along with hundreds of other hot air balloons. It was amazing. Laurent said, “Mom, it feels like a dream.” And it really did. It was so magical.

The whole family enjoyed the safari – seeing the elephants and giraffes was amazing and the kids were so excited to see them in person. This was definitely a highlight of our trip.

We’ve been really lucky so far, not having bad luck or major challenges. Although we had planned to take a train from Zambia to Tanzania and found out there was no train due to a broken bridge, we had to take a 16 hour bus instead. It was quite an experience – it was so hot and there were only three stops. One of the stops was a field to go to the toilet. It wasn’t the best part of the trip but we still made good memories!

Learning life lessons as a family

The most challenging part of the journey for us is being together 24/7 because we don’t get a break and sometimes we get tired and need some alone time. Seb and I don’t have much time to cool off or catch our breath, but it’s not too bad. All in all we did pretty well.

The obvious reason for this trip is that I want my kids to fill their visual memory. I want them to see as many beautiful things as possible. You’re going to lose that wide field of view, so we’re trying to stay in nature where these big, wide, open spaces are. But we quickly realized that it doesn’t matter where we go: it’s beautiful everywhere. Every country has beautiful places to see. We just want to travel and let the adventure surprise us.

We realized that the children being children means that they really live in the moment. You don’t make this journey with an urgency to keep memories: you just enjoy the moment.

But often they show us beautiful things. For example, we take them to a magnificent temple and we want them to see it, but they will see a nice cute stray cat and that is the best part of their day for them. And that’s okay, because they teach us beauty through their own eyes, which is just as important as what we find beautiful.

We also want this journey to help our children become more resilient. They will slowly lose their sight, so they have to constantly adapt. They will have to adapt their whole lives – they may be able to drive their car, but after a while they will have to give it up because they can’t see well enough. Or after a while they may have to use a cane or guide dog. It will be constant readjustment and adjustment. They’re going to fall and need to get back up and find solutions, so I hope the journey will help them a bit. We do not travel first class or stay in luxury hotels. Sometimes traveling can get very uncomfortable; We can be hot, hungry or tired so they have to adapt all the time and I hope that they get that from the journey, that they become a little more self-reliant in life and can learn when a situation is uncomfortable or awkward when you Focus on what’s not good, it only makes it worse, but if you focus on what’s good in a situation, even a bad situation, or if you focus on the solution, it makes it things easier.

There is currently no cure for retinitis pigmentosa. However, there are many promising treatments currently being tested, so there is hope. But we don’t want to spend our lives waiting or looking for a cure; We just want to make sure we’re living the best life possible and ready for the future.

I want people to learn from our story that it’s okay to be sad and angry and go through all those emotions when you’re facing big challenges in your life, but after a while I think it’s important accept the situation as it is and then look forward to something. Ask yourself: What can I do now and think about how to move forward and find solutions. Focus on what’s left in your life. There are always beautiful things in your life; You just have to choose to see them.

Edith Lemay, 44, lives in Canada with her husband Sebastian, 45, and their children Mia, 11, Leo, nine, Colin, seven, and Laurent, five. You can follow her journey on Instagram and Facebook @pleinleursyeux.

All views expressed in this article are the author’s own.

Edited by Katie Russell.