When Kari Harbath gave birth to her daughter, Sloan, in an emergency c-section in 2019, she was thrust into the role of caretaker.
“My life before was, like, paddle boarding up at Causey [Reservoir] and grabbing a Starbucks and eating avocado toast,” she said, leaning against the back of the couch in her Ogden home.
Now, instead of something stereotypically millennial, Harbath’s time is dedicated to her daughter. Sloan was born with a rare syndrome called CHARGE. She’s deafblind and she can’t walk, but at this point, doctors haven’t found any cognitive disabilities. Still, she’s no stranger to helicopter ambulance rides.
The mother-daughter duo moved into a new house a few weeks ago, so the windows are bare. Sunlight floods the kitchen and living room. Next to a miniature plastic table, there’s a computer on a desk. Harbath works a full-time at-home communications job on top of caring for Sloan.
“It may sound like, ‘Oh, it's just a bottle,’ ‘Oh, it's just diapers,’ ‘Oh, it's just a wheelchair,’ but once you start adding all those things together, and everywhere you go, you have to have them, even just to get coffee, even just to — and you know that's not changing anytime soon,” Harbath said. “That's a lot still, as a parent, and then a solo parent too. It's a lot to take on.”
Raising Sloan has opened Harbath up to a community of people with disabilities and challenged her preconceived notions. The work is physically exhausting, but it’s taught her confidence. It’s also kept her going through grief. Harbath’s mother and husband both died within a year and a half of her giving birth.
“Through routine, through making sure I got up every day, and then helping me find joy in really simple things, because that is part of Sloan's life,” she said. “Like, she finds joy in grass, she finds joy in water, she finds joy in a breeze.”
Everyone has an opinion on how to raise a child, but at some point, Harbath said she’s learned to trust her instincts. That meant unlearning societal norms, like realizing Sloan doesn’t need to learn to walk.
“You can be mobile without having to use your legs,” she said. “That's just a reality of our day and age.” Rather than force Sloan to change, Harbath said, society and systems need to accommodate people with disabilities. That includes the health care system and social stigma. For months, she’s fought to get a special bed that would send alerts when her daughter’s movements change and keep her from falling. The bed might seem like a simple prescription, she said, but it has not been easy to get.
“Her life is truly at risk at night because her mom needs sleep,” Harbath said. “And she is just loving, like, jumping out of bed and loves to roll herself up in sheets and wants to play with her massaging toys.”
Beside the kitchen island, 6-year-old Sloan played with a shaker toy on her resonance board, a thin plywood platform that allowed her to feel vibrations as she moved. When they were out shopping recently, Sloan blew a loud raspberry, as she often does, because she loves the vibrations of her lips. Another little girl heard it.
“And her mom, in a really sort of condescending, sad voice, said, ‘Oh, honey, it's OK, it's OK,’ like Sloan was scary. And that was really hard for me,” Harbath said.
When Harbath’s days wind down and her daughter sleeps, she worries about what Sloan’s life will be like when she grows up. That concern drives her to attend protests and city council meetings. She’s also the co-founder of a social media account to speak up about Ogden and Utah politics.
“I just want to actually do what I can to help our community and make change and, you know, help be a voice for Sloan, because she communicates differently.”
Success for Harbath means supporting all kinds of people with disabilities — and making sure her daughter is happy.
Her best days as a caregiver are when she can drink iced tea from an oversized Stanley tumbler while Sloan plays with friends at the swimming pool.
“She loves to swim,” she said. “And recently, she has learned how to hold her breath. And it's amazing, amazing, and it's also a little terrifying, because I have to watch as she'll hold her breath and she'll just go for it. She’ll dive.”
Macy Lipkin is a Report for America corps member who reports for KUER in northern Utah.
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