Krystyn Jones thinks of the hospital as a second home. The 18-year-old La Follette High School senior has had an estimated 13 operations over her lifetime related to spina bifida, a birth defect involving the incomplete development of the spinal cord, along with corresponding scoliosis.
But while she's comfortable in hospitals now, Jones used to feel profound fear regarding hospitalization. And now, she's undertaken a mission to help other children in similar positions cope with that same fear.
“I had a lot of night terrors about the machines, the MRIs,” she recalled. “I was scared of how long I would be in the hospital. Going through surgery was really scary. I always was scared of not waking up.”
Jones, a singer and one half of the local R&B duo Trend-N-Topic, has launched a national concert tour visiting children's hospitals, in which she speaks to and sings to young patients. So far, she's stopped at the American Family Children's Hospital in Madison, and at St. Jude’s Children’s Research Hospital in Memphis, Tennessee. She has 10 other stops lined up.
She has also written an untitled children’s book on her life and hospital experiences, currently in production at the faith-based publishing house Faith Works.
Jones said her message with both endeavors is simple: “Hospitals aren’t as scary as they seem.”
She said she felt compelled to share her story with other children after a particularly prolonged hospital stay in 2017. Jones was hospitalized at American Family for a surgery to fix an untethering of her spinal cord. As with many of her operations, the procedure was high-risk: There was a 50-50 chance that the surgery would render her unable to walk again, she said.
The operation was a success, but Jones did temporarily lose mobility in her lower body due to nerve damage, necessitating an extended recovery period: two months, instead of the anticipated two weeks. She was in a lot of pain.
“Her feet were really really sensitive to touch. Even just a blanket over her feet was painful,” said Jones' mother, Andrea.
“When people would walk past, there would be a little bit of wind when they walked by,” said Jones. “I would start crying (from the pain).”
Still, Jones found comfort from the hospital staff. A child life specialist at the hospital took time to paint Jones' nails. After Jones switched floors post-surgery, one nurse would trade shifts so they could check in on her.
Those relationships were a major inspiration for Jones' decision to share her story with the book and the musical tour. In the book, Jones said she shares anecdotes like when she first learned about her condition as a young child, to times where her parents would visit her classroom to help her explain why she needed to wear leg braces.
The book includes advice for readers, stressing the importance of trusting hospital staff in particular.
"It's helping get them OK with hospitals," explained Jones. "(Nurses) are not there to hurt you. They’re there to help you."
Jones also shares those stories at her Create a Smile tour stops. At each location, Jones talks about her condition and her life experiences to patients gathered in hospital recreation rooms. She also performs Trend-N-Topic songs, and leads activities like glow-painting.
“It’s the best experience, just to see smiles on the kids' faces,” she said. “In St. Jude’s, there was a baby. It looked like she was about seven or eight months (old). We would sing a song, and she was just dancing and smiling.”
Jones' future tour stops include Children’s Minnesota in the Twin Cities and at Shriner’s Hospital in Chicago, along with three different hospitals in New Jersey. She added that she has even received a request for a visit from a hospital in Tanzania, although the logistics and cost of travel would need to be figured out for that to happen.
Jones said she there’s more she wants to do as part of the project. She hopes to write an entire series of books targeting different age ranges of hospitalized children. Next up would be a book for middle school students, focused specifically on how to navigate bullying.
In the meantime, she also has other musical pursuits and school keeping her busy. She said that Trend-N-Topic is still going strong. Plus, she recently got acceptance letters from her two top colleges of choice, Tennessee State University and Clark Atlanta University.