A Walk To Remember
*Syndicated by VEB of SBNation on July 24, 2019
It was just as we left it one year ago: perfectly manicured, screens scattered along the infield, red shorts, gray shirts, and young prospects fielding and swinging and sweating under the burning summer sky.
We step onto the warning track, and I can’t help but gaze beyond the center field wall to the Pennsylvania mountainside, hill tucked beyond hill, so full and lush the rest of the world loses its color. It's a magnificent view, one that's put Medlar Field on the tongue of every minor league baseball fan as the most beautiful.
But Dave doesn’t look beyond the pitcher’s mound. He hasn’t in the past year, and perhaps, he never will again.
“I promised Josiah I’d take him around the warning track on Opening Day this year.” He tilts his head toward the sky. “This one’s for you.”
Josiah Viera was born on May 25, 2004, and appeared to be a healthy boy, but as soon as Dave Bohner, his grandfather and Jen Viera, Josiah’s mother laid him in his crib, something wasn’t right. Within six months, Josiah gained just two pounds. They tried everything. New formulas, new feeding schedules, tests, experiments, but nothing worked. Josiah couldn't put on weight. His skin was translucent red like a premature baby, and test results brought more questions than answers. The first year of Josiah’s life was spent within the pale walls of a hospital room listening to a heart monitor. Birthday candles were blown out with the nursing staff and walked around the neighborhood became strolls around floor two of the Janet Weis Children's Hospital. Doctors were at a loss, so they sent Jen and Josiah to the Children’s Hospital of Philadelphia or CHOP for a definitive diagnosis.
That night, after Jen and Josiah spent the day bouncing from specialist to consultant, Dave returned home from his shift at the welding plant and his phone buzzed on the kitchen table.
“It’s bad. Real Bad.”
We reach the right-field foul pole and Dave introduces me to every coach, personnel, grounds-crew, and instructor we pass on the way. Since the day the Children’s Miracle Network brought Josiah to his first State College Spikes game, he’s been a fixture at the park. Playing cards with the players, lineup decisions with the coaches, and his famous home run trot were daily occurrences. After the last round of batting practice, Josiah would walk to the plate—helmet bouncing, jersey hanging off his 30-lb frame, bat dragging behind his heels only a few inches shorter than his 27-inch body, the team surrounding the net—and take his “home run round” where he’d connect with the pitch, dribbling only a few feet off the home plate dirt, and run the bases. The Spikes would cheer and yell, waving him around third until he reached the dog pile at home plate. Josiah loved these days, but perhaps, the team did even more.
Most people approach Dave and bring up the home run trots. The storytellers look the same as I can remember, bulky strength coaches in a skin-tight dri-fit leading agility exercises, athletic trainers walking around in collared shirts and fanny-pack full of gauze and tape, and field staff members prepping the diamond for 7:05. Dave knows everyone by first name. They all know Dave as “Pap,” the name Josiah knew him as.
We look up at the wall and see a curtain tied from the railing hanging over its edge.
“This will be one special night,” I say to Dave.
“It already is.”
Hutchinson-Gilford Progeria or simply, Progeria is a terminal disease that causes rapid aging in children, about ten years for every one year alive. It’s a disturbing disease that drains the body of life in broad daylight. By age 8, their faces wrinkle and sag. By age 9, their knees and elbows bulge from extreme arthritis. By 10 or 11, walking is a hope.
There is no cure. Life expectancy is thirteen to eighteen years.
It’s so rare that Progeria affects one in four million births, and pending a genetic test, the CHOP specialists believe Josiah was one of them. Dave and Jen looked up everything they could on Progeria. The couldn’t believe it. Why after all the guesses, tests, unknowns, misdiagnosis, and more tests was this the correct one? Why Progeria? Why Josiah?
“He doesn’t have Progeria,” Josiah’s dermatologist said upon his arrival from CHOP, “I bet my whole career on it.”
CHOP’s test came back.
Josiah was terminal.
“Before we could even comprehend the diagnosis,” Dave said, “he still couldn’t gain weight, and then he got even sicker.”
Beyond the diagnosis, Josiah was fighting a stomach infection, a collapsed left lung while fluid also filled his right, pneumonia, and an inability to gain weight. Within just a few weeks from CHOP, his body shut down. After finding stool seeping from his feeding tube in his stomach, Josiah was rushed into emergency surgery to save his life.
Then, he slipped into a coma.
An adult drip of morphine managed the pain, a central tube, now mounted directly inside his intestines stood uncovered—his skin was too brittle to hold a stitch—and the doctor told the family to prepare for the worst. Josiah wasn’t going to last more than a few days.
There were no other treatment options. Morphine was maxed. Infection was still spreading. His lungs functioned through a ventilator. At best, Josiah was expected to be a vegetable for the rest of his life. Days went by with no improvement. The fight was now seeming too cruel to their little boy, and the family made the heart-wrenching decision to say goodbye.
When the moment came to turn off the ventilator, Jen wanted the moment to be with just her and her baby—wrapped in her arms one last time. Dave stood outside the door, an entire army of doctors and nurses tearfully paid their final respects to Josiah and stood next to him. There was nothing left for the medical team to do but slowly shut down life-support. But, with no explanation, no medical reasoning, instead of a peaceful stillness and a tearful goodbye, Jen’s voice rattled the hospital. “My God. Get in here. My baby’s awake!”
Dave just got his knee replaced, and I comment how fast he's walking. For a man in his late sixties—tree truck legs, heavy frame, double-wide sneakers—he's moving better than I've ever seen. He tells he would have made this walk even if they had to cut his leg off.
I believe him.
We pass the center field wall and trek into visitor territory. Crosscutter caps with saw blades twisted as a “W” pop up when they hear our feet crunch the warning track cinders. Most think we don’t belong on the diamond, and they might be half right. I’m just a fan, nothing more. But the man walking next to me, walking for the first time without a limp, talking about the Opening Day tradition against the Williamsport Crosscutters, he and his family belong here more than they ever will.
By the time Josiah was 13-years-old, he already won the St. Louis Cardinal’s “Good Guy Award”, had a State College Spikes award named after him, two ESPN e:60 features, named a Children’s Miracle Network National “Miracle Child”, and officially designated a full-time honorary bench coach of the spikes for the past four seasons. Joe Kruzel has been the State College Spikes manager for the past two seasons and saw Josiah’s impact first-hand. “I tell the guys every year,” he said in his Ohio/Midwestern accent that he claims is from God’s Country, “if you don’t take time to get to know this young man, you’ve wasted your entire year.”
Josiah was an inspiration. A medical anomaly—a miracle. A reminder of how cruel and fragile life can be. And he was a message to fight, and live life to its fullest no matter what the circumstance.
But all Josiah wanted to be was Josiah.
“He just wanted to be treated like a normal person, so we treated him like any of the guys,” Kruzel continued, “he just wanted to be one of the guys.”
Dave and I turn the corner at the foul pole, and he looks at the mound again. “That night,” Dave begins, “both of them. Wow.”
But his words fall short of his heart.
“The All-Star games...just wow.”
It was the top of the ninth inning of the 2017 NYPL All-Star Game and Kruzel still needed two more pitchers to enter the game. His plan was to let their reliever get the first out, then bring in the closer for the final two. No one knew it, but he’s been planning the pitching change all day. Kruzel looks down at Josiah standing next to him—helmet on, jersey hanging from his shoulders, Pap to his right—and said, “You wanna make the switch?”
After the laughs and smiles and multiple explanations to Pap that Josiah is really going to make the pitching change, Kruzel told him precisely what to do.
“Walk out and signal with your left hand,” he joked, “we don’t have a righty warming up so if you signal with your right, we won’t have a pitcher. Then, take the ball from the pitcher and give him a pat on the butt. Then give the ball to the new pitcher, and give him a pat on the butt.”
The first out was made. “Ready?”
Kruzel called time from the top step of the dugout and Josiah climbed the stairs behind him. He waved him forward, and Josiah points to the bullpen with his left hand. The crowd stands, and as if the world tilted its focus toward a little boy standing on the dirt of a diamond, as Josiah approached the mound, time stood still.
“He did it perfectly,” Kruzel said, “Absolutely perfect.”
A final pat on the butt to the new pitcher and a tip of the cap to the standing ovation completed Josiah’s debut as a manager. “The response was overwhelming,” Kruzel recalled about the pitching change, “but I did it without telling anyone because Josiah wouldn’t want that. No press conference before the game. No publicity. Josiah didn’t want that. He just wanted to be one of the guys.”
But the story quickly rattled throughout the baseball community. From popular demand, Josiah once again made the final pitching change of the NYPL All-Star Game the next year, but this time, it was at his stadium—on his home mound. The Spikes—and most of the crowd—prepared for the switch. News reporters, cell phone cameras, and every form of social media opened when Kruzel stood on the top step with Josiah in his arms.
But within the past year, Josiah's body deteriorated. Progeria no longer was a disease they would soon have to fight—the battle was now at their doorstep.
Josiah's famed home run trot has long been retired.
His final ten swings of batting practice—now a memory.
Most of the year was spent in an electric wheelchair just to attend school, and Josiah, his family, and the Spikes slowly talked about his retirement from the game of baseball.
Kruzel placed him on the ground. “Do you want me to carry you?”
“No, I will walk.”
He was recovering from a broken leg and his steps were small limps. His bones had turned brittle, and each hobble was as painful to Josiah as they looked for the crowd. But the stadium rose to their feet, the outfield jogged into the infield dirt, and both dugouts stood at the top step to give Josiah the final push of energy to make it to the mound.
“Even talking about it now just chokes me up,” Kruzel recalled.
Josiah made the switch and hobbled back toward the dugout. He tipped his cap to the stadium and Kruzel scooped him into his arms. A manger’s journey completed.
On Christmas Eve, December 24, 2018, Josiah Viera passed away with his family by his side. He was 14 years old.
“That was for you, Josiah,” Dave says as we reach home plate.
He draws a breath then looks to the mound, then to the curtain in right field. Before we can reach the dugout, coaches, coordinators, players, and players continue to give their condolences and thank Dave for being here. He told him he’d be back this year. I’m not sure if I believe him.
He tells about the Cardinals gift to Josiah tonight, but I can’t stop thinking about unopened Christmas gifts beneath the tree. Josiah saved up to give Pap his own. It still sits on his dresser, bow attached.
I head up to the stands, and Dave heads into the clubhouse with the team—his team. Fans trickle into the park wearing Josiah Viera official “Never Give Up” tee-shirts, myself included, and the park buzzes with excitement. Their goal was 2,000 ticket sales, but once Josiah Viera Day was announced, they hit their goal a week in advance. Dave throws out the first pitch with Daisha, Josiah’s older sister, rosters are announced, and the crowd’s attention is drawn to a cloth hanging on the wall in right field. Tonight, there was one last gift we needed to give to Josiah.
The curtain drops. The crowd roars.
The first number to ever be retired as a State College Spike is #10, Josiah Viera.
Forever our friend. Forever one of the guys.