Kelli and Craig Campbell, of Franklin who is the primary caregiver to her 29-year-old daughter, Samantha. Samantha has cerebral palsy. Lacy Atkins, The Tennessean
When Samantha Campbell was born 29 years ago weighing 1 pound, 13 ounces, her mother, Kelli, wasn’t prepared for the anguish that came with leaving the hospital without a newborn in her arms.
Samantha was born at 27 weeks and spent the next three months in the neonatal intensive care unit.
"That was really the hardest thing I’ve ever done in my life," Kelli Campbell said. "It didn’t even occur to me that it was going to be so difficult."
Nearly three decades later, Campbell is one of Samantha’s primary caretakers and an advocate for people with disabilities.
Samantha has cerebral palsy. She can’t speak, walk or feed herself.
When she’s not with her peers at the Waves day program in Franklin for people with special needs, Samantha spends much of her time with her mother.
It hasn’t been an easy road. When the family was living in Nashville in the 1990s, Campbell worked tirelessly to make sure Samantha had access to the right services.
Samantha Campbell, 29 years old, laughs as she snuggles with her mother Kelli at their home in Franklin, Tenn., Monday, May 7, 2018.
(Photo: Lacy Atkins / The Tennessean)
"In a big city, you have to fight for everything. But Kelli knew about due process and really dug in and fought for anything school related, physical therapy related, even a bus ride home. She had to fight for that," said Campbell’s husband, Craig.
The family decided to move to Williamson County in 1998 for access to more special education resources.
Samantha attended Freedom Middle School before graduating from Centennial High School.
"She’s been Samantha’s advocate her entire life," Craig Campbell said about Kelli.
Campbell has also worked to ensure her younger daughter, Leesha, 26, isn’t overshadowed by Samantha’s needs.
Kelli Campbell hold her daughter Samantha’s hand at their home in Franklin, Tenn., Monday, May 7, 2018.
A resource for other parents
Because Samantha was born prematurely, the Campbells knew there was a greater chance she would have developmental issues.
One day, Campbell noticed Samantha’s eyes wouldn’t stop twitching back and forth. Doctors found she was having nearly constant seizures.
"(Kelli’s) the one who caught that," Craig Campbell said.
Samantha also had a brain bleed and was having apnea spells, where she’d stop breathing while she slept. Those conditions caused brain damage that, more than a year after she was born, led doctors to diagnose her with cerebral palsy.
Kelli Campbell stopped working to take care of Samantha full time – and she was already equipped with many of the skills needed to do so, having earned her bachelor’s degree from Middle Tennessee State University in speech and hearing therapy, with minors in special education and psychology.
"I learned a lot about the system and the (individualized education program) system, not knowing I was going to need them for my own child," she said.
Campbell uses the experience she’s gained over the past three decades to advocate for other parents, whether it’s lending an ear for those who have premature babies or helping them navigate the system for finding special needs services for children.
"Learning your child has a disability is a difficult thing in and of itself," she said. "So having some knowledge moving forward with that was a really helpful thing."
Kelli and Craig Campbell comfort their daughter Samantha who has cerebral palsy at their home in Franklin, Tenn., Monday, May 7, 2018.
‘We really are a team’
When she’s not at Waves, Samantha likes snuggling with her parents, watching HGTV ("Fixer Upper" is her favorite), listening to music from artists like Shania Twain and Gretchen Wilson and looking at magazines.
"Her mind, socially (and) intellectually, she understands everything going on," Campbell said.
Kelli Campbell moves her daughter Samantha from her wheelchair to the couch at their home in Franklin, Tenn., Monday, May 7, 2018.
While most of her friends are now empty nesters, Campbell still wakes up Samantha every morning, gets her dressed for the day and prepares her meals.
"That’s been a little bit challenging, especially as we age physically, and it gets more difficult for us to do the physical things that need to be done, like lifting and whatnot," Campbell said.
When Samantha is at her program, Campbell keeps working – she does the accounting for Craig’s public relations firm, handles all the health insurance coverage hurdles for Samantha, who’s covered by TennCare, and leads an in-depth weekly Bible study.
Campbell said her faith is what keeps her going.
"Having a relationship with God, knowing that I’m not the one that has to have all the power, (and) there’s another greater power than me that has a greater plan than I can understand," she said. "It’s not our place to determine who she is and why she’s here – she’s here for a very specific purpose."
And she’s quick to credit her husband for the role he plays in Samantha’s life.
"Craig does everything I do. We really are a team, because one person can’t do it," she said.
Reach Elaina Sauber at firstname.lastname@example.org, 615-571-1172 or follow @ElainaSauber on Twitter.