When one couple discovered their children had a condition that would cause them to lose their sight, they made a bucket list. They wanted their kids to see the world before it was too late, they tell Hilary Rose.
When Mia Pelletier was three, she struggled to see in the dark. If she got up in the night, her parents noticed that she bumped into walls and tripped over furniture. They thought it was odd and mentioned it to an optician, but Mia was their first child so they knew no better. They tried not to worry too much. Over the next four years, as their family expanded to include Leo, Colin and Laurent, Edith Lemay and Sébastien Pelletier took Mia to a succession of eye specialists, who conducted tests for a variety of diseases and came up with a name: retinitis pigmentosa. When Mia was seven, they explained what that meant.
“She was home for lunch and talking about disabilities,” says Lemay, who agonised with Pelletier over whether and when to tell their daughter. “I thought, OK, it’s time. I told her, ‘You too are going to have a disability when you’re older. Your eyes might not work properly. You might go blind.’ She looked at me and said, ‘Oh, that’s too bad.’ And that’s it.”
A few days later, Lemay, 46, watched as Mia felt her way from her bedroom to the bathroom with her eyes closed, practising for when she would be blind. She listened as her daughter explained that from now on she would keep her bedroom superclean and tidy so that when she couldn’t see any more she’d still know where everything was. Today, sitting next to Pelletier, 47, at their home in Montreal, Lemay recalls on Zoom that the experience was “gut-wrenching. Terrible. But at the same time she was focusing on the solution. She wasn’t scared; she wasn’t crying. She was like, let’s try to figure this out. That gave us a lot of strength, because if she’s not worried about it, why should we be?”
The couple know that three of their four children will one day go blind. Mia is now 13, Colin 9 and Laurent 7. The odds of them transmitting the disease to each child were one in four, but only Leo, now 11, dodged it. As Lemay puts it with a wry smile, if the chances are one in four, it’s “pretty bad luck” that three out of four are affected. The deterioration in their eyesight is caused by a combination of genes making cells in the retina die little by little. The progress is slow and unstoppable, and by the time they get to their thirties or forties, all three will be blind. There’s no treatment and no cure. At first Lemay and Pelletier railed against such powerlessness.”You go to the ophthalmologist and they say, ‘Good luck. Come back next year,’ " Pelletier continues.”You think, what can I do? Diet? Exercise? We just have to wait till they go blind?” Lemay says. “That’s it?”
A specialist vision impairment teacher at the children’s school suggested they show Mia pictures of elephants and giraffes in books. “She told us to fill their visual memory,” Lemay recalls. “She said, ‘Give them images for when they go blind, that’s the best thing you can do.’ " Lemay had a better idea, which was to take the kids to see the real thing. Pelletier takes up the story, explaining that their vision will contract from peripheral to central, getting narrower and narrower.
“Essentially we wanted to show them big landscapes: deserts, mountains, steppes. We wanted them to have the widest, most magnificent views they could.”
So in 2020 they formed a plan. They would take the children out of school, rent out the house and travel the world for a year. They budgeted US$200 a day for everyone, and the whole trip would eventually cost them about $70,000, but they would finance it with a windfall Sébastien had from shares when the finance company he worked for was sold. Edith had lost her job handling business intelligence and logistics for Cirque du Soleil when the pandemic hit, so she was free to go. But two years of lockdowns and travel restrictions meant their plans were repeatedly redrawn or postponed. They used the time to write a bucket list of countries they wanted to visit.
“Countries are a little abstract,” Pelletier says. “The kids were like, ‘What countries are there?’ When we told Colin, who was five, that we were going to the other side of the world, he said, ‘Where’s the other side of the world?’”
So they reframed the question: what would you like to do? In March 2022 they gave up trying to make detailed plans, caught a flight to Namibia and made it up as they went along. No 1 on the list was to go on safari. No 12 was to eat with chopsticks. For reasons that never became clear, to him or anyone else, Laurent dreamt of drinking juice on a camel.
“The other kids were so excited when we were about to go on the camel,” Lemay says. “They all said, ‘Did you bring the juice? Did you bring the juice?’ "
Mia wanted to ride a horse in Mongolia and learn to surf. Colin wanted to eat ice cream and sleep on a train. Leo, bless him, wanted to go to Japan to see Pokémons in the wild. Sébastien wanted to see Angkor Wat and Edith wanted to go hot-air ballooning in Cappadocia. Together, the family watched the sun rise over a mountain range and set over a desert. Two months in, a documentary maker clocked them on social media and spent six months filming them on the road. They thought it would be a nice memento for the children that nobody would ever really see. Instead the documentary, Blink, has been picked up by National Geographic and premiered at the Telluride and London film festivals. It will be shown in cinemas and streamed globally on Disney+. By turns heartwarming and heartbreaking, tragic and uplifting, it begins with an unnamed family walking up a slope, in the snow, in the dark. “Look!” one child says excitedly, pointing at the sky.
There’s a pause as the northern lights flicker all around them. “I can’t see anything,” a small voice says.
“Look in front of you!” the first child adds excitedly. Another pause.
“We don’t see them,” another says.
“When you have kids,” their mother says in the voiceover, “you just want to imagine everything’s going to be OK.”
What follows is proof that it can be OK, but not quite in the way you might hope. The film shows the boys playing football in the Amazon basin with local children (No 33 was to explore a rainforest and no 15 to make friends in other countries). As the light starts to fade, their mother has to shout to explain where the ball is. Mia talks about the moment she realised her vision was starting to differ from that of her friends: they could look up at the night sky and see stars.
“Stars,” her mother says wistfully, “are the first things you say goodbye to.”
The family spend Christmas in Cambodia and Leo’s birthday in Nepal. They tickle each other in the desert and abseil down a waterfall. They spend a night stuck in a cable car halfway up a mountain in a thunderstorm and chant their times tables walking along a terrifying track in the Himalayas. Laurent wonders if maybe he’ll be blind just for a little while and his mother says maybe and recalls him asking what it meant to be blind. “It’s like if your eyes are always closed,” she says. “I felt like I somehow ended his innocence.” She sits on a sand dune with Mia, promising to describe sunsets to her when she can no longer see them. Mia reminds her that she’ll still be able to feel the sand between her fingers, and sun and wind on her face.
Lemay and Pelletier talk about the bittersweet experience of showing their children wonderful things in the knowledge that one day they won’t be able to see them. Mostly, though, the entire family radiates joy and excitement.
“We asked Mia, ‘How do you live with this, knowing you’re going to lose your sight?’ " Pelletier tells me today. “And she said, ‘By living in the present moment. That’s what I’m focusing on. Whatever happens in the future, I can’t do anything about it. So I make sure to look at it as what I have, rather than what I don’t.’ "
The family marvel at the fact that having focused the entire trip on seeing things, what they actually came back with were intangibles: resilience, an optimism that things will be OK, unbreakable family bonds. Other people return from holiday with souvenirs; they came back with the knowledge that as long as they were all together, they could cope with anything.
But travelling with four small children is not for the faint-hearted. They were strict about packing light – no toys, no teddies, just a handful of clothes. They each took an e-reader, and the children got through more than 100 books each. They homeschooled them and continued the no-screen policy they operate at home. So yes, travelling the world can be chaotic but, as Lemay points out, so is home life when you’ve got four children: after-school clubs, playdates, music lessons, sports practice. On the road, she says, everything is simpler, because you’re doing the same thing. “We just say, ‘Let’s go there,’ and we go as a family. That’s a great gift. How many people get to spend so many meaningful hours with their kids?”
They got back a year ago and found the children slipped back easily into their old routines. They talk about their future matter of factly. They’ve taken the children to try vision-restricting goggles (“They thought it was the funniest thing, so they always surprise us”), white sticks and the possibility of getting a guide dog. “For a kid,” Lemay says, “getting a dog is something to look forward to, even if it’s because you’re going to be blind.”
They’ve made a point of talking to people who are blind or visually impaired, people who have fulfilling lives and careers, so the children know that losing their sight isn’t the end; it’s a bend in the road. They take comfort from the resilience their children developed on the trip and their bond as siblings. Leo tells the others, “I’ll be there to take care of you.”
“As long as we’re together,” Lemay says, “everything is OK.”
But Lemay and Pelletier struggle with the materialism of home life, the sheer quantity of noise and “stuff”. They contemplate selling up and going back on the road, but know that family and roots are important too, that the children need to grow up surrounded by a network of loving grandparents and cousins and aunts. As for the possibility of a future treatment for retinitis pigmentosa, they’re in touch with research teams around the world and open to cooperating with anyone, but they barely allow themselves to hope and certainly don’t share those thoughts with the children. They don’t want to give them false hope and leave them hostage to disappointment.
“We as adults worry and see all the challenges,” Lemay says. “They don’t.”
“We’re trying to give them the tools that, if and when it happens, they can go about their lives as naturally as possible,” Pelletier adds. “They’re not victims. It’s not cancer. It’s not a disease they’re going to die from – it’s a challenge they will have to face.”
Lemay says her heart contracts every time she sees a blind person with a cane, or her children struggling in the dark. But if they knew that, or how much she worries about them, it would make them insecure. Instead, she has learnt to live with it, to accept it and to occasionally grieve alone with Pelletier, in private.
“We have hard moments and of course there are times when I cry, but we’re a loving family. Most of the time it’s hard to be sad when your children are so happy. You look around and see kids struggling, and ours are intelligent, resourceful and loving. They have so much more than so many other kids. It doesn’t matter what life throws at them, they’ll find a solution. They’re going to be blind, but we don’t dwell on that.”
Written by: Hilary Rose
© The Times of London