A Smile for a Grateful Heart

Ryan Shane Johnson turned the big 3-0 this year.

For a gift, Ryan’s family and friends pulled together to get him a something he could really use: a new hospital bed.

“His T-shirts and clothes don’t wear out ever,” his stepmother Rennette Johnson said. His first bed, however, is another story.

Ryan was born with cerebral palsy and severe scoliosis. When he was 14, his spine was so severely contorted that his right hip touched his left shoulder.

He has since developed severe osteoporosis. His parents learned this when his foot was fractured merely from the dress shoes he wore to a wedding. Doctors told them that his bones were as brittle as a 70-year-old man.

Now, Ryan doesn’t wear shoes. He weighs 60 pounds, is fed through a tube and spends most of his time in a wheelchair.

To communicate, he bellows at different pitches, moves his leg or arm (an added leg kick translates, “hell yes,” stepbrother Michael said) and grins that famous Ryan Shane-grin that turns a anyone's bad day into the best day ("You can have a really bad day," said his aunt Veronica Shaner. "What do you have to be sad or depressed about, when that little boy can smile at you?").

More than 200 people attended Ryan's 30th birthday party in September at the American Legion. The family raised $3,000 — enough for a new hospital bed, a video monitor and new flooring in his room. 

A large Nascar mural now covers one wall. A framed Rolling Stone magazine cover depicting Johnny Cash hangs on the wall near his door. The ratty old carpet is gone, and it's replaced with wood laminate flooring. Family and friends completed the project in about two weeks.

"We're blessed," Rennette, 60, said with a smile. "It may not be fancy, but we're blessed."

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Rick Johnson was a single father of three young boys when he met Rennette.

She was the teller at bank in Manatee where he deposited his paychecks.

“You seem like a really nice guy,” Rennette told him. “But you’re everything I’m not looking for.”

She was a 12-year widow and had a 23-year-old son.

But Rick delivered a single red rose to her workplace every Friday.

The first time she met his boys — Joshua, Ryan and Randy at ages 6, 9, 11, respectively — she remembers seeing Joshua's sweet face at the door. Then she walked in and saw Ryan on the couch.

“I thought, ‘Oh dear, he is so precious. But how do you care for a child like that?’” she said.

“I learned.”

She said as soon as she saw those boys, "that was it."

"Why he picked me, I have no idea," Rennette said. "But I'm sure glad he did. I wouldn't have missed a day of it."

Rick and Rennette married on Thanksgiving Day exactly 17 years ago, not long after she lost her father.

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Every day Ryan wakes up (with a smile, Rennette said) between 6 and 6:30 a.m. He is dressed and fed (usually a Boost nutrition drink pushed through a feeding tube with a syringe).

Then he likes to sit so he can look out the storm door, where he listens for familiar passersby. He looks forward to Mondays and Thursdays, when the solid waste truck comes through.

“He loves all the big trucks,” Rennette said. “And when Sherman honks his horn.”

He usually has a snack at mid-morning. Then lunch at noon. They read three to four times per week and listen to music (usually Johnny Cash, but also bagpipes, classical, Calypso or anything “that messes with his Daddy,” stepbrother Michael said).

Ryan gets an afternoon snack, after which, he starts watching for Daddy to come home. That’s when he gets to go outside in the driveway, where he hangs with the guys (“No girls allowed,” Rennette said).

His buddy Glen Fender likes to tell stories about their dream adventures:

“We like to go horseback riding,” Fender said. “His horse is extremely fast. It takes me a long time to catch up. Usually by the time I get to the campfire, he’s caught some trout or something.”

At night, after dinner, they say their nighttime prayers so Ryan is asleep by 8:30 p.m. Rennette stays up until 10:30 or 11 p.m. for his last dose of medicine.

“The seizures and osteoporosis are the two scariest things for me,” Rennette said.

His brothers have received the dreaded phone call — that this would be it — several times.

The most recent scare happened just before his birthday party. Ryan had to be hospitalized with severe abdominal discomfort, an apparent obstructed bowel. 

Caseworker Anita Braun-Luria has worked with the family for 10 years. She helped them find a wheel chair ramp, a car lift and diapers that fit him. She gives the family a lot of credit for being such a solid "circle of support."

“He’s really the center of their life, really the center of the family,” she said at his 30th birthday party in September. “I wish every disabled [person] could be cared for like that. They should be a model.”

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An antique, gild-framed, hologram portrait of Jesus and the Last Supper scene hangs over the side of Ryan's new adjustable hospital bed. It once belonged to Rennette's father.

The hologram portrait was removed from its former position above the head of Ryan's bed when his family began the remodeling project funded from his birthday party. Rennette said it took her a minute to figure out why Ryan was so fussy at bedtime on the night it was removed. He kept looking above his head, she said.

Do you miss your Jesus picture, she asked him. Ryan gave her the double arm jerk sign for "yes." As soon as she taped her unframed picture of Jesus at the head of his bed, he looked and a big smile spread across his face.

"He went right to sleep," she said.

With his new hospital bed and video monitor, he sleeps more soundly through the night, she said. She no longer wakes up several times through the night to turn him over to a more comfortable sleeping position. She can now see whether his noises mean he's choking or if he just needs extra blankets. It's also introduced a new way to make him smile.

"The echo game," Rennette said.

She wheeled Ryan inside his room, turned the video monitor on and began to speak. Her voice could be heard one second later in the adjoining master bedroom.

A huge smile spread across Ryan's face.

"I'll do anything to hear that laugh," she said.