Many parents dream of their children growing up and seeing the world. But Edith LeMay, a mother of four from Canada, is worried her children are running out of time to do so.
When her first child, Mia, was young, she noticed she would bump into things. LeMay was worried about seeing her daughter and brought her to the doctor. In 2018, Mia was diagnosed with retinitis pigmentosa.
“What it does is that the cell in the retina dies over time and loses its field of vision. They will lose their vision from the outside to the center and eventually, they are like seeing through a straw. And there they will likely go completely blind by middle age,” LeMay told CBS News .
The disease is hereditary, which means that LeMay’s other children were at risk. She soon noticed that two of her sons, Colleen and Laurent, were experiencing the same symptoms. And soon they were diagnosed, too.
“Of course it was devastating. And when you have a child, you always have a picture of what their future is going to be and what your future is going to be like and all of a sudden, you get this news and you need to erase that and think about it again. It’s really a grieving process,” LeMay said.
LeMay said she talks openly about the disease with her children, but that her young sons may be too young to fully realize what will happen to see them. “Baby…what I didn’t realize was that he didn’t know what it was like to be blind,” said LeMay. “And of course, he’s five, so he started asking hundreds of questions: How am I going to cross the street, how am I going to drive, will my wife be blind?”
“It was a painful moment, because I was trying to make it as positive and normal as possible…but on the 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 will make the most of it. And in the future, when challenges come, we will face them and find a solution.”
Lemay wanted to prepare her children for what was to come and was considering teaching them Braille, but a specialist had another suggestion.
“They said the best thing you can do is fill in their visual memory,” LeMay said. “And they were talking about reading books and seeing pictures of elephants and giraffes in books. That’s when it clicked. I’m like, ‘I’m not going to do that in books, I’m going to see it in real life.'”
In March, LeMay, her husband, and their four children left Canada and embarked on an epic journey, traveling the world for an entire year—to show their children the world, before it was too late.
Now, they’re in Bali – and they’ve already crossed Africa, from Namibia to Tanzania. They have also visited Turkey and Mongolia and are planning to make their way through Asia.
“They’re kids, they’re excited about just about anything. They don’t go through it with an urgency to see things and remember things. They don’t think, ‘This might be the last time I see that thing.'” “They’re really in the moment and they’re enjoying it,” LeMay said.
During their trip, Lemay educates her children at home. The family has also made a bucket list of fun activities they would like to accomplish, so that each child can see their dreams come true.
Mia, 11, wanted to ride a horse. They crossed it off their list in Mongolia. “I felt so free,” said LeMay. “After the ride, she had tears in her eyes. It was really nice to see her.”
Colin, 7, wanted to sleep on a train. “So, we went to Tazzara [Railway] In Tanzania we all had bunk beds on the train and slept affected by the movement of the train. “He was very happy,” she said.
Laurent, 5, had an interesting idea. “He wanted to drink juice on a camel,” LeMay laughed. “That was really specific and we thought it was very funny.” “And we actually did, when we were in Mongolia, we went for a camel ride and got juice for him just to take a picture and he was so happy.”
Lemay said her children don’t just make visual memories. They also learn important life lessons, such as focusing on the positive. “Traveling isn’t easy. It’s uncomfortable. Sometimes they’re tired and there’s frustration and we’re hungry. It’s hard. But with travel, I want them to be steadfast,” she said.
“I want them to know that any difficult situation is temporary, because they will need a lot of flexibility throughout their lives,” she said. “They will adjust to the situation with their eyes and then within a few years or a few months after that, they will lose a good portion of their eyesight and they will have to re-adapt and adapt again and fall and come back again,” Lemay continued.
Many parents want to give their children the world – and this mom did.