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 the
parking lot [of the optometrist] thinking, ‘you know what, I just think there’s more to
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.
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.
“We pulled over and she ran up and down
and up and down these sand dunes for like an hour. And got filthy
dirty and made sand angels and had a blast. And it was really there
that I realized I had to make myself a list of places that she should
go and things that she should do. … If I hadn’t stopped and given her that experience, she would never
have been able to pull from that memory, that soft sand, and what that
looked 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…
… the sparkling water of swimming pools …
… crashing blue waves …
… her first beach 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 list
together,” 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. I
think 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.
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 when
she was just this little, itty-bitty thing and said ‘Momma, girls
are tough.'” Catrina recalled. “And I said ‘Yeah, baby, girls are tough.’ And that has been
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 have
no doubt this girl has amazing, amazing things coming in her future,” Catrina said. “I have no doubt.”