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bucket list

Alishia (NettlesSheepstealer on Reddit)

A woman with an eye disease made a bucket list of things to see while she can—including snow.

Making a bucket list is a simple way of aspiring toward future happiness, and I respect anyone who makes that investment in themselves. It’s even more impressive when someone takes action because of seemingly bad news, using a negative to inspire a positive.

In a recent Internet post, a woman named Alishia shared that she has an "eye disease causing pretty rapid blindness" and, after receiving that diagnosis, decided to make a bucket list of things she "wanted to see before [losing] the rest of it." One item on that list was snow—given that she lives in South Louisiana, she’d seen it fall but never stick on the ground. Alishia made plans with a friend to go up north and experience the full winter-weather treatment: building a snowman, making snowballs and snow angels. Turns out she didn’t have to make the trip—in late January, her town wound up with a 10-inch accumulation (and Louisiana itself with a "historic" downfall).

Winnie The Pooh Animation GIF by DisneyGiphy

"I cried so much," she wrote on Reddit. "It was the most beautiful thing I've ever seen. Everyone, adults included, were outside playing in it. I'm 38, and I was out there giggling like a 5-year-old. It was even more meaningful that it happened here, where most of us have never seen it."

After reading the story, I reached out to to Alishia, who kindly shared more details about her experience. Her eye disease is RP, Retinitis Pigmentosa, which, she explains, "starts with losing your night vision and then slowly causes you to have tunnel vision." She adds, "The tunnel closes over time. I got officially diagnosed at 36 but stopped driving at 26." (According to Cleveland Clinic, RP is a "group of disorders" that affect people differently: "Most people with RP have low vision, and some people go blind. The vision changes usually start in childhood. But sometimes these changes occur so slowly that you don’t realize it’s happening.")

The big snow day, she says, got off to an early start when she woke up at 2:45 a.m. and "couldn’t fall back asleep" due to excitement. Given that she "can’t see anything at night except lights" and didn’t expect much snow to begin with, she tried to keep her expectations modest. Then the downpour came.

Alishia stands in the snow with an umbrella."I don't own a coat because it doesn't get super cold here," Alishia says, "so most people just put on multiple pairs of clothes and hoodies"Alishia (NettlesSheepstealer on Reddit)

"It started falling, and at first I couldn't see it, but it sounded like someone opening a carbonated drink," she says. "A couple hours later I could see it on the ground. Then I realized I could actually see the cars in the parking lot. It was dark, but I could see the light reflecting off all the snow. I cried like a baby [laughs]. Later when the sun came out, I went outside with my white cane and it didn't click in my head that I couldn't use it because everything was covered. All of my neighbors and their kids were outside. My favorite thing in the world is hearing people have fun. There were people outside in their 40s laughing and making snowmen. None of them turned out very well, but we don't know what we're doing. I stayed outside all day. It was so different from seeing it in the movies."

The top photo, where she's wearing a robe, shows her "feeble attempt at a snowman," she notes with a laugh.

On Reddit, Alishia mentioned some of the remaining items on her bucket list (going to a drag show, taking her son to the beach, and doing karaoke with her mom and little sister) and some of the others she’s already checked off (going fishing with her son and seeing a waterfall). She tells me she also got to see her first concert: the punk rock band Bad Religion.

"It was amazing," she says. "No one treated me different. My sister told me after that a couple people tried to give me a fist bump, which was kinda funny since I can only see a small area of my vision. The things I do with my son are also beautiful. The more things I tick off the list, the less afraid I am of the world. People are nicer than I gave them credit for."

Home Alone Reaction GIF by 20th Century Fox Home EntertainmentGiphy

After posting her story on Reddit, Alishia has been able to connect with a lot of people—another example of how she "[gets] joy out of people enjoying things."

"It sounds weird, but I think vision loss really put a lot of things into perspective for me," she says. "I savor things more deeply than I did before. I've had people tell me they'd die if they lost their vision. I like to talk to people and let them know it doesn't have to be scary."

Catrina Frost remembers looking at photos of her daughter, Cailee, as a baby and thinking one of her eyes looked off-center.

Cailee's older brother, Tanner, had been born a few years earlier with major vision problems, so at first, the mom of four wanted to believe she was just being overly cautious.

Later, a vision test revealed that Cailee did indeed have some problems with her eyes. She was severely nearsighted and suffering from amblyopia, where the function of one eye is reduced because the eye and the brain are not working together properly.


But Catrina's instincts told her there was something more going on too.

"I just had this mommy gut feeling," Catrina said. "And I literally remember being in theparking lot [of the optometrist] thinking, 'you know what, I just think there's more tothis.'"

Eventually Cailee was diagnosed with a rare genetic disorder called FEVR (familial exudative vitreoretinopathy).

It was a condition that would likely eventually cause her to go completely blind.

This is Cailee in a pink shirt that reads, 'Always be who you are.' All photos by Catrina Frost, unless otherwise noted.

It was during a road trip to see a FEVR specialist in California that Catrina had an idea: a "sightseeing" bucket list.

As they drove, they came across the Imperial Sand Dunes, miles of soft, beautiful sand sandwiched by smooth dessert on either side. And Cailee fell in love with them.

The sun setting behind the Imperial Sand Dunes in California. Photo by David McNew/Getty Images.

"We pulled over and she ran up and downand up and down these sand dunes for like an hour. And got filthydirty and made sand angels and had a blast. And it was really therethat I realized I had to make myself a list of places that she shouldgo and things that she should do. ... If I hadn't stopped and given her that experience, she would neverhave been able to pull from that memory, that soft sand, and what thatlooked like and felt like."

When the two got to California, the specialist told them Cailee would likely lose all her vision within the next four or five years.

So when it came to this "bucket list" idea, it was now or never.

With help from donations brought in via a GoFundMe campaign, Cailee has been able to see the flowing gowns of princesses at Disney World...

Cailee hugs Belle at Disney World.

... the sparkling water of swimming pools ...

Cailee floats in a pool.

... crashing blue waves ...

Cailee hugs her Minnie Mouse doll on the beach.

... her first beach sunset ...

Cailee soaks in the sunset.

... and that's really just the beginning.

You don't need a visual memory to be able to perceive and interact with the world. But for Catrina, Cailee, and her three brothers (who are also along for the ride), the memories they make on these adventures will bring the family a lot of joy over the coming years.

"We're still putting the listtogether," Catrina said. "I've asked Cailee what she wants to do. She really wants to try horseback riding [again]. She wants to go to a ballet,so "The Nutcracker" is something I'm thinking about taking her to. Ithink she'd really enjoy that."

Some day soon, Catrina will take the kids to see the giant California redwoods. Then, a fashion show. Then art class, rock-climbing class, cooking class.

And so many other things.

In the meantime, Catrina says they are preparing Cailee to go blind.

Cailee practices walking with a cane.

She has been practicing her cane skills and reading braille in school for years. So when the time comes, she'll be ready.

"She came out of her third laser surgery whenshe was just this little, itty-bitty thing and said 'Momma, girlsare tough.'" Catrina recalled. "And I said 'Yeah, baby, girls are tough.' And that has beenher motto."

Catrina urges other parents to make sure their kids get their eyes checked early and often, but also that blindness, and conditions that can cause it, are not necessarily something to fear.

"Whether she's sighted or not, I haveno doubt this girl has amazing, amazing things coming in her future," Catrina said. "I have no doubt."