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By Caitlin O’Kane
September 21, 2022 / 10:51 AM / CBS News
Many parents dream of their children growing up and seeing the world. But Edith Lemay, a mother of four from Canada, worried her children were running out of time to do that.
When her first child, Mia, was little, she noticed she would bump into things. Lemay worried about her daughter’s vision and brought her to a doctor. In 2018, Mia was diagnosed with retinitis pigmentosa.
“What it does is that the cell in the retina dies over time and they lose their field of vision. They’re going to lose their vision from the outside to the center and in the end, it’s like seeing through straw. And there’s a chance they will go completely blind by midlife,” Lemay told CBS News.
The disease is genetic, meaning Lemay’s other kids were at risk. She soon noticed two of her sons, Collin and Laurent, had the same symptoms. They were soon diagnosed, too.
“Of course it was devastating. And when you have a kid, you always have an image of what their future is going to be like and what your future is going to be like and all of a sudden, you get that news and you need to erase that and think it over. And it really is a grieving process,” Lemay said.
Lemay said she talks openly about the disease with her children, but her younger sons might be too young to fully realize what will happen to their vision. “My little one … what I didn’t realize was that he didn’t know what it means to be blind,” Lemay said. “And of course, he’s five, so he started asking hundreds of questions: how am I going to cross the street, how will I drive my car, will my wife be blind?”
“It was a gut-wrenching moment, because I was trying to keep it as positive and normal as possible … but inside it was really hard,” she said.
Fortunately, she said, her daughter is realistic about it. “When people ask her, ‘How do you feel about that?’ Her answer is always the same: ‘Today is today. Today my vision is good, so I’m going to make the most of it. And in the future, when challenges come, we’ll face it and find a solution.'”
Lemay wanted to prepare her kids for what was to come and thought about teaching them braille, but a specialist had another suggestion.
“They said, the best thing you can do is to fill their visual memory,” Lemay said. “And they were talking about reading books and seeing pictures of elephants and giraffes in books. And that’s when it clicked. I’m like, ‘I’m not going to do that in books, I’m going to see them in real life.'”
In March, Lemay, her husband, and her four kids left Canada and embarked on an epic journey, traveling the globe for a whole year – showing their kids the world, before it is too late.
Now, they’re in Bali – already having crossed Africa, from Namibia to Tanzania. They also visited Turkey and Mongolia and plan to work their way through Asia.
“They’re kids, they’re excited about pretty much anything. They don’t go through it with the urgency of seeing things and remembering things. They don’t think about, ‘Oh it might be the last time I see that thing.’ They’re really in the moment and they enjoy it,” Lemay said.
During their trip, Lemay is homeschooling her kids. The family also made a bucket list of fun activities they want to accomplish, so each kid can see their dreams come true.
Mia, 11, wanted to go horseback riding. They crossed it off their list in Mongolia. “She felt so free. After the horseback riding, she had tears in her eyes. It was really beautiful to see,” Lemay said.
Collin, 7, wanted to sleep on a train. “So, we went on the Tazara [Railway] in Tanzania and we had all our bunkbeds in the train and we slept being rocked by the movement of the train. He was super happy,” she said.
Laurent, 5, had an interesting idea. “He wanted to drink juice on a camel. That was really specific and we thought it was so funny,” Lemay laughed. “And we actually did, when we were in Mongolia, we went camel riding and we got a juice for him just to take a picture and he was super happy.”
Lemay said her kids are not only making visual memories. They’re also learning important life lessons, like focusing on the positive. “It’s not an easy travel. It’s uncomfortable. Sometimes they’re tired and there’s frustration and we’re hungry. It’s difficult. But with the travel, I want them to be resilient,” she said.
“I want them to know that any situation that’s hard is temporary, because through their life, they’ll need lots of resilience,” she said. “They’re going to adapt to a situation with their eyesight and then in a few years or a few months later, they’ll lose a chunk of their eyesights and they will have to readapt and adapt again and fall and get back again,” Lemay continued.
Many parents want to give their kids the world – and this mom did.
Caitlin O’Kane is a digital content producer covering trending stories for CBS News and its good news brand, The Uplift.
First published on September 21, 2022 / 10:51 AM
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