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Fight for X impacts a family, community

 
Ross Johnson helps his son Xavier, who sustained a traumatic brain injury in May, during a recent therapy session.
Ross Johnson helps his son Xavier, who sustained a traumatic brain injury in May, during a recent therapy session.
Published Aug. 21, 2015

JACKSONVILLE

As Sunlake High's football team geared up for the first day of fall practice, junior linebacker Xavier Johnson had a workload of his own awaiting, nearly 200 miles away.

Xavier — or X, as he is called — had already endured several hours of therapy that early August afternoon at Brooks Rehabilitation hospital in Jacksonville. His day started at 9 a.m., when he got to work on the Erigo Pro, a machine used to move his legs in a walking motion with the help of electrical stimulation. X had taken more than 1,200 steps in about 15 minutes. Later, during speech therapy, his therapist asked questions while he stared at pictures and pressed buttons on an iPad to answer.

By the time X got to occupational therapy at 1:30, he began to look tired. And with about 45 minutes left in his sessions, his eyes started to close.

His father reminded him to keep pushing, keep grinding.

"I tell him all the time, 'X, there are people out there who think you'll never play football again. Walk again. Feed yourself again,' " Ross Johnson said. " 'What are you going to do about it?' "

Noticing that X was fading, the therapist pulled out a pair of cards that read "yes" and "no."

"X, can you keep working for me?" she asked.

Not wasting any time, X pointed to yes.

In one of his final activities in the session, the therapist asked X to handle the football — a game-worn one that he carried with him everywhere, given to him by the high school team down the street from the hospital.

As he fumbled with it, Ross searched for the words his son needed to hear.

"Cover the tips. High and tight, right?"

X might not have control of all of his movements, but that one he knew. Immediately, he cradled the ball the way he had been taught back in his Pop Warner days.

Ross flashed a proud grin.

"The kid is in there," he said.

Accident that changed lives

What started as a celebration quickly turned into a parent's nightmare.

Ross and Lisa Johnson were grilling burgers and playing horseshoes with friends at Lake Ann near Land O'Lakes on May 16 when they heard a scream for help come from the water where 16-year-old X and his friends were tubing. Micah Peretti, the father of one of the boys, rushed to see what happened and returned with news that X had been badly hurt after the raft he was riding on collided with a dock.

Ross found Xavier still on the raft, unconscious. He tried to wake him but got no response.

Nearby, Tyler Peretti, a junior wide receiver for Sunlake who was riding the tube with X, was bleeding profusely from his leg but otherwise okay.

"We were just going in a circle. We were looping out, and we were just going fast enough for the tube to slip out of the wake, the dock was just right there," Peretti recalled. "I guess the water was splashing him in the face so he didn't see it coming. I saw it, and I jumped off."

Within minutes, X, who sustained a traumatic brain injury despite no external injuries to his body, was life-flighted to St. Joseph's Hospital in Tampa, where he would spend the next four weeks in a medically induced coma as doctors tried to relieve the pressure on his brain. Doctors initially did not expect X to live past Day 4.

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In a different part of town, Sunlake coach Bill Browning was reviewing film from an intrasquad game the night before.

"One of the last things I did on the film was (I said), 'X needs to see more time at fullback,' " Browning said. "About an hour after that, my phone started ringing with text messages."

Fighting mentality instilled at birth

Even before X was born, his father knew he was going to be a football player.

Ross, a founding pastor at Gathering Pointe Church in Land O'Lakes, a small church with a congregation size of 90, grew up in Council Bluffs, Iowa, and was born and raised a University of Nebraska football fan.

On the Cornhuskers' team, it has long been a tradition for the starting defensive players — called the Blackshirts — to cross their arms in front of their chest, signifying the skull and crossbones they use as their logo.

When his son was born on March 16, 1999, Ross knew just what to call him.

"I named Xavier Xavier so when he played defense, he could throw the bones," he said. "It was predestined."

X's birth weight was 4 pounds, 15 ounces because Lisa had preeclampsia, a pregnancy complication that often leads to premature and underweight births. When they brought X home from the hospital, he was smaller than their place mats. Just three months later, he was in the 95th percentile for height and weight.

At 6 years old, playing for his first football team, the Pennridge Greenjackets, X would seek out the biggest kid on the field to tackle. When the coaches decided to give him a chance at running back, Ross knew right off the bat that it wouldn't exactly work.

"Running backs are for trying to avoid getting tackled," Ross said. "He would run right at the guy who was trying to tackle him, just to see if he could run him down."

Now in a wheelchair, unable to stand or walk on his own, X can't run anyone down. But that attitude, Ross said, remains. And "throwing the bones" has taken on a whole new meaning.

Since the accident, the Pasco County community has supported the Johnsons. People have stepped up to care for younger sons Zephaniah, 11, and Zeke, 7, while Lisa, a teacher at Oakstead Elementary School, and Ross attend to X.

During X's stay in the ICU at St. Joseph's, there often would be as many as 50 people in the waiting area outside his room — some close friends, others the Johnsons had never met.

Furthered by Ross' daily Facebook updates detailing X's progress, the support spread to social media. Photos and videos of people "throwing the bones" for X, including NASCAR's Darrell Waltrip and the Tampa Bay Buccaneers' Ronde Barber, circulated.

The people who have been touched by X's story and the idea of a larger purpose to so much pain give Ross a sense of peace.

"(God) showed me …that he's in control," he said. "The impact that we've seen, changes in our lives, it's very comforting."

Progress beyond expectations

A dry erase board hung on the wall of X's hospital room. In the bottom right-hand corner, Ross had written, "Prove 'em wrong like always."

In the days after the accident, doctors prepared the family for the worst, as the pressure in X's brain couldn't seem to be alleviated. But after two weeks in the coma, it was.

Upon leaving the ICU in mid July, the family's insurance company originally wanted to send X to a nursing home, or back to Land O'Lakes with a limited number of in-home care visits — no one thinking his condition would improve with added therapy. But that happened, too.

"If we would have done any of those options, he would not be where he is right now," Lisa said. "We had a team that worked with him to get him where he is now. I am so thankful that we advocated and we fought, rather than just take their first offer."

X made the most of the brief time at Brooks, going through four hours daily of occupational, physical and speech therapy. On July 29, after two weeks at Brooks, he was elevated from a 3 to a 4 on the Rancho Scale — which determines the level of brain function in individuals with traumatic brain injuries — and given an additional week at the facility.

Before arriving at Brooks, he could only hold his head to the left. He had a lot of right-side neglect with his vision. Now he can move his head in both directions, track with his eyes, and read and make correct choices during speech therapy.

His personality peeked through during that Monday afternoon therapy, when he gave his therapists a "gun show" — flexing his muscles on command — and pretended to eat the plastic grapes being used in an occupational therapy exercise.

Two days after his trach was removed, the speech therapist gave him a copy of the alphabet and told him to point to letters to make a sentence.

X spelled out "I love you" and pointed to his dad.

A long-awaited homecoming

After 90 straight days in various hospitals, X left Brooks on Aug. 13 and returned to his home in Land O'Lakes. Five days before that, more than 861 people gathered at Sunlake High for the Warrior Run, a 5K fundraiser to help with the Johnsons' medical bills. The event raised $40,000, organizer Janet Rohrberg said.

"Every single day something happened that just came from the sky," Rohrberg said of the planning process. "You don't see a large community like that come into play, and we've just been absolutely amazed. It's completely changed our lives in more than one way, just being able to be a part of that kind of thing."

The Johnsons still have a long road ahead. X will soon attend rehabilitation therapy at Tampa General Hospital. And though the family has switched insurance carriers to one that specializes in disabled children, Ross said he still isn't sure what kind of financial hit they'll take from X's extended stay in the hospital or for future care.

Their insurance company has already declined to pay the $30,000 bill for the helicopter that airlifted X to the hospital the day of the accident.

"I can read Greek and Hebrew," Johnson said, laughing, "but I can't read an insurance bill."

The Johnsons prefer to spend their time thinking about their son's future — one that, despite doctors' warnings, the Johnsons are confident is bright.

"As ridiculous as this may sound to a reader or whomever picks up on this, our goal for him is to have him wearing No. 42 again," Ross said. "You take that away from him, he'd shut down."

Tyler Peretti has made a full recovery and will suit up for the Seahawks this season. Peretti visited X every day during his stay at St. Joseph's.

"I'm just waiting for you to get back on the field," Peretti wrote in one of his letters to X.

And though playing is a goal currently out of reach for X, his return to Sunlake might come sooner than expected.

A couple of weeks ago, Browning sent Ross a text message: "You tell X to keep grinding, because we want him at the kickoff classic wearing No. 42."

The Seahawks have a tough matchup tonight, paired up against perennial powerhouse East Lake. But win or lose, the coach said, having X there would be a game-changer.

"If that happens," Browning said, "that's a successful night for us."

Ross admits that the story he would have written for X involved reaching people through football, becoming a leader on and off the field. But Ross has learned to put down the pen.

"God just has a different story to write," he said. "And it's had a much, much bigger impact in our community than the story I was writing."

Contact Kelly Parsons at kaparsons@tampabay.com. Follow @_kellyparsons.