From the oversized shower and extra-wide doors to the pieces of décor laden with inspirational sayings and the souvenir cross on the wall from a pilgrimage to meet Pope Francis in Rome, there are little reminders everywhere that this is not a normal home.
How could it be? Linda Hayworth shares a room with a spoiled Siberian husky and her 19-year-old daughter, Kylie, who requires 24-hour care. Her husband, Kyle, sleeps in the basement. His bed’s made up with a black and gold Hawkeyes comforter to match the fanatical collection of sports paraphernalia in the downstairs living room.
Some things don’t change.
The family is trying to lead a normal life or one as normal as it gets when your child has terminal brain cancer.
When Kylie was a junior in high school, doctors discovered a medulloblastoma, the most common type of pediatric brain tumor, usually diagnosed in children under age 10. Months of unexplained dizziness, nausea, vomiting, headaches and weight loss persisted.
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Then they found it: a tumor the size of goose egg, putting pressure on the C-1 and C-2 vertebrae at the base of her brain. This area controls balance, posture and complex motor functions like finer hand movements, speech and swallowing.
Surgeons removed the tumor on April 27, 2013.
But there were complications. In the days after the surgery, Kylie developed posterior fossa syndrome, which caused partial paralysis and put her in a wheelchair.
The Hayworths’ home wasn’t handicap accessible. Why would it be? Children shouldn’t get cancer. Children shouldn’t die before their parents.
The family of four moved into their new home in November. It’s nestled among the rolling hills in rural Correctionville, Iowa. As the crow flies, Kyle’s parents live just a mile away on the family homestead.
“I’m a farm boy from the heart,” he said. “When we met and got married, we moved to town. I’ve always wanted to live on an acreage. It took me this long to get here.”
They built the home, partly, so Kylie could have a better quality of life.
The kitchen has been designed and organized so she can reach the microwave and everyday essentials like plates and glasses. The overall layout includes wide doorways, hallways and stairs.
Photos: Hayworth home
Hayworth Home
The Hayworths home incorporates universal design to increase accessibility to commonly used appliances like the microwave, and it's been organized so everyday essentials like dinnerware are easily within reach from a wheelchair.
Linda hired The Elements by K. Sorbe, based in Storm Lake, Iowa, to make the house a home.
“They took some of my items that I really cherished and mixed it in with new stuff,” she said.
In the living room, there are plenty of keepsakes like the handprints cast in concrete in stepping stones from when Kylie and her older sister Haley, now 21, were little girls and the four generations family photo.
One special piece is a canvas print from when Kylie got her senior pictures taken. Haley is holding her up, standing by her side. There’s a poem written in the sky.
My sister, I want you to know how much you mean to me.
My sister has strength and courage everyone can see.
My sister showed us all how to handle life's blows.
My sister took it all in stride, smiled, and said, "That's how it goes."
At one point, Kylie had four brain surgeries in two weeks, trying to get rid of the cancer. But it came back. The best thing she could do was go out and live life and live it, she has.
The family went to Italy last year to meet the pope through the Make-A-Wish Foundation. He placed his hand on her forehead and blessed her.
It was one of the items on her bucket list.
She has also gone skydiving and parasailing. She’s ridden on a train in Verde Canyon and soared through the sky in a hot air balloon. She’s had the chance to pet a zebra and got a tattoo, bearing a cross with a Bible verse, Philippians 4:13, which says, “I can do all things through Christ who strengthens me.”
