Our Children Are Going Blind, So We Are Taking Them Around The World

By Edith Lemay 

Courtesy of Newsweek

When my daughter Mia was about three years old, my husband Sebastian and I realized something was wrong with her vision. During the night, she would get up and start bumping into furniture or walls. If I handed her things in a dim light, she would not be able to see them. She was our first child, so we didn't know it was a problem at first but, after a while, I realized something was not adding up.

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

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

Learning our children will lose their sight

The condition means that the cells in the retina slowly die, so three of my children will slowly lose their vision from the outside towards the inside; it will be like looking through a straw. The experts don't know how long it will take for my children to lose their vision—they can't predict it, and it could be different from one child to another. It seems to be pretty slow—my children have really good day-time vision, but they are essentially blind when the light is dim. While there is a possibility that they will keep part of their field of vision, they are expected to be totally blind by mid-life.

Our first reaction to the diagnosis was disbelief and shock. When you have kids, you have an idea of how their future will look, what your life will look like, and all of a sudden you need to rethink all that. It's a grieving process: at first you don't believe it's true, then you get angry, you look for answers everywhere, you get sad. But after a while you just have to accept it. It's only after you accept it that you can move forward.

I thought it was best for Mia to know about the diagnosis right away. I didn't want to hide anything from her and have her resent me afterwards. I told her matter-of-factly that, due to the problem with her eyes, she was likely to be blind when she was an adult. She thought about it for a moment and said: "Oh, that's not fun." That was the extent of her reaction. A few days later, she said: "Mummy, I think I need to keep my room clean, because once I lose my vision I'll need to find my things, so they always need to be in the same place." I saw her a couple times after that trying to get from one room to another with her eyes closed. I was reassured that she did understand what was happening and was finding solutions on her own.

For the two little ones, they've heard about it since they were too young to understand that the three of them will lose their vision. What I did not realize is the little one, Laurent, didn't really know what it meant. In August, we were in the car, and he looked at me and asked: "Mummy, what does it mean to be blind?" and I realized he knows but he does not understand it. So I told him it was like keeping your eyes closed all the time. Of course, he's five, so he started asking a billion questions after that, like "How will I cross the street?", "How will I drive a car?" and "Will my wife be blind?" I said there are solutions, and told him it wouldn't be a problem, but inside I was crushed.

Whenever there is a problem, I like to spring into action, but the thing with the diagnosis 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 at school, so she could continue to do it once she lost her vision. But the specialists at her school said they didn't have all the resources and her vision was too good to learn braille properly. They said the best thing to do would be to fill her visual memory, put as much imagery in her head as we could—look at elephants or giraffes in a book, for instance, so when she is blind she would have those images to refer to.

Decided to travel the world to make visual memories

That's when it clicked. I thought to myself: Let's go and show her elephants and giraffes in real life—that way she will really remember it. Sebastian and I decided to quit our jobs Montreal in Québec, Canada and travel the world with our children. We wanted to fill their visual memory with as many beautiful things as we could.

We planned to leave in July, 2020, and we had a nice itinerary planned out—crossing Russia and going to Mongolia and China. But, of course, that did not happen because of the pandemic. The next two years were a waiting game, and we had to keep redoing our itinerary. In the end, we looked at which countries were open, and booked a ticket to Namibia, where we flew, without an itinerary, in March, 2022.

From Namibia we went to Zambia, Tanzania, and all the way to Zanzibar by land. We spent a month in Turkey in July, then we went to Mongolia for six weeks and flew to Bali, which started our two months in Indonesia, where we are currently. We don't really know where we'll go next. We don't really have a set itinerary: we usually plan a month ahead. So after Indonesia, we'll probably go to Malaysia for a while and up to Thailand, Vietnam, Laos, Cambodia, but how and when we don't know exactly.

Every person in the family has had a favorite place. I think Mia's favorite activity was horseback riding in Mongolia; when she got down from her horse, she was teary-eyed and emotional. It was a great experience for her. Colin loved the 24-hour train ride on the Tazara Railway through Tanzania because he really wanted to sleep on a train. Leo's favorite moment was Kilimanjaro; we did a little hike on the foot of the mountain and the vegetation was amazing—it was misty, 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 the sunrise and we walked in a really dark field. We couldn't see much and all of a sudden a big hot air balloon filled up. It was like a giant lantern rising all around us. We told the kids we couldn't afford to go in a hot air balloon, but they were excited just to see them take off. Then we told them that, in fact, we were going to be going in a balloon, and they were so excited. We got in the hot air balloon and it rose slowly as the sun was rising in the valley, with hundreds of other hot air balloons. It was just amazing. Laurent said: "Mommy, it feels like a dream." And it really did. It was so magical.

The whole family enjoyed the safari—seeing elephants and giraffes was amazing and the kids were so excited to see them in real life. That was definitely a highlight of our trip.

We've been really lucky so far that we haven't had any bad luck or big challenges. Although we had planned to take a train from Zambia to Tanzania and found out there were no trains running because of a broken bridge, so we had to take a 16-hour bus instead. That was quite the experience—it was so hot, and there were only three stops. One of the stops was a field for going 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 trip for us is being together 24/7 because we don't get any break and sometimes we get tired and need some time alone. Seb and I don't have much time to cool down or have breathing space, but it's not too bad. All in all, we've been doing 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 they can. They're going to lose that wide field of vision, so we're trying to stay in nature where those big, wide open spaces are. But we soon realized it does not matter where we go: everywhere is beautiful. Every country has beautiful places to see. We just want to travel and let the adventure surprise us.

We have realized that the kids being kids means they really live in the moment. They don't do this trip with an urgency to keep memories: they're just enjoying the moment.

But often they show us beautiful things. For example, we take them to a magnificent temple and want them to look at it, but they're going to see a nice, cute stray cat and for them that is the most beautiful thing of their day. And that's okay because they're teaching us beauty through their own eyes, which is just as important as what we find beautiful.

We also want this trip to help our kids to be more resilient. They're going to slowly lose their vision, so they will need to adapt all the time. They will need to adjust throughout their lives— they might be able to drive their car, but after a while they will have to let that go because they can't see well enough. Or after a while, they might have to use a cane or a guide dog. It will be constant readjustment and adaptation. They will fall down and need to get back up and find solutions, so the trip I hope will help them achieve that a little bit. We're not traveling in first class or staying at lavish hotels. Sometimes when you travel it can get really uncomfortable; we can be hot, hungry or tired, so they need to adapt all the time and I hope they get that from the trip, that they can become a little more self-reliant in life and learn when a situation is uncomfortable or unpleasant if you focus on what's not good it just makes it worse but if you focus on what's good in a situation, even in a bad situation, or you focus on the solution it makes things easier.

There is no cure right now for retinitis pigmentosa. There's many promising treatments which are undergoing tests right now, however, so there is hope. But we don't want to live our lives waiting or looking for a cure; we just want to make sure we live the best life we can, and make sure we are ready for the future.

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