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Stoney Man’s lessons on fatherhood
YSU’s Wolford goes distance for his son with rare disease
By JOE SCALZO
liberty
It’s 7 p.m. Wednesday night, and Eric Wolford, head football coach at Youngstown State University, is seated at his kitchen table, talking about his son. Suddenly, his wife, Melinda, walks into the room holding a paper plate full of spicy mustard, courtesy of 4-year-old Stone Wolford.
“This is what your son was doing,” Melinda said, grinning.
He just shook his head and smiled.
Wolford has a lot of sayings, things like “You can’t Google football” and “You can’t win the Daytona 500 driving a tractor.” Here’s another: “Put some mustard on that!” It’s the type of thing he might say if a quarterback doesn’t throw a deep ball far enough, but it’s not clear whether Stone decided to squirt mustard on a paper plate because of something his dad said or because, well, he felt like squirting mustard.
Stone — aka “Stoney Man” — knows only about 25 words, about half the number of an average 2-year-old.
“He’s unique,” said Wolford. “Stone has taught me a lot of patience.”
EARLY SIGNS OF TROUBLE
Four years ago, after suffering a miscarriage in her first pregnancy, Melinda Wolford gave birth to the couple’s first child. She was 38, which put her at a slightly higher risk for complications, but as a school psychologist who specialized in neurological disorders, Melinda took special care to do everything right, from the obvious (avoid smoke and alcohol) to the not-so-obvious (she didn’t even let herself breathe hair spray).
“I’m an athlete, Wolf’s an athlete; we’re both very physical, strong people,” said Melinda. “I’m just going to say it out loud — never in a million years did we think we’d have a kid with disabilities.”
But, almost immediately, Stone began to show signs of trouble.
He had trouble feeding. He couldn’t move his neck. He had vision problems.
The Wolfords switched from nursing to formula. They visited different doctors. They got different diagnoses. And Melinda got more and more frustrated.
Over the ensuing months, she visited 40 different specialists. Cardiologists. Ophthalmologists. Dermatologists. Geneticists. Neurologists. It seemed each offered more problems and fewer answers. One doctor even told her she suffered from “Munchausen by proxy,” a condition where the mother makes up illnesses. (That doctor got an earful.)
Melinda started blaming herself for eating bad turkey during her pregnancy, or using a sugar substitute in her tea. A missionary’s daughter, she wondered if God was punishing her.
Finally, after several genetic tests, Stone was diagnosed with Cardiofaciocutaneous (CFC) Syndrome, a rare genetic disorder characterized by skin problems, heart malformations and mental retardation. Only about 350 people worldwide have the disease. None has lived past 24.
THE HEALING PROCESS
Rather than bringing relief, the Wolfords were devastated by the diagnosis. Any hope that their son would be normal was gone. They spent the following weeks praying together, studying together, grieving together.
And, eventually — healing together.
“One day Wolf said to me, ‘Has he changed us for the better? Has he brought us joy?’” Melinda recalled. “And I said ‘Yes.’ And I’ll never forget what he said: ‘Well, then, that’s good enough for me.’”
“We had some hard times,” Wolford admitted. “I think you always hold out hope that your son’s going to be OK, that he’s going to grow out of it. But you have to get over that part of it. And once you do, you’re fine.”
Today is Father’s Day. As an assistant football coach, Wolford has always been a surrogate father to his players, helping them adjust to living away from home from the first time while dealing with classes, girlfriends and, sometimes, life and death. Now, in his first stint as a head coach, that role is magnified.
“It’s easy to give lip service to being a father figure,” he said. “But my wife will tell you, it’s not always easy. People think of coaching like, ‘Hey, you’re just calling plays,’ but I can’t tell you how many times I’ve had a kid walk into my office because he has problems with his mom or his dad or his girlfriend.”
As an assistant at Arizona in 2004, one of Wolford’s recruits died while warming up for a morning workout. They had spent the previous evening going to dinner, Wal-Mart and the grocery store. Hours later, Wolford was the one who relayed the news to the family.
Six months later, another of his players was shot at a party — “He was just an innocent bystander,” Wolford said — and he again got the phone assignment.
“I had to wake up the kid’s parents to tell them the school was putting them on the first flight out in the morning because their son was in critical condition and was probably not going to make it,” he said.
Wolford would love to see Stone live past 25 — “I hope he does, but he’s not,” he said, with typical bluntness – and dreams of having him as his equipment manager, his right-hand man.
“Every time I get a chance at practice, I take him into the locker room,” Wolford said. “I think it’s important for my guys to see.”
“I’m like, ‘You think you’ve got it bad because you have to get up at 6 or 7 in the morning? You don’t realize how lucky you are.’”
Stone has never slept through the night. He usually wakes up four times a night, although since the Wolfords moved into their house in Liberty last month, he’s only averaging twice a night. He struggled with vomiting in his earlier years — Melinda kept a stack of clean sheets and towels next to his bed – and still has no interest in potty training.
He can’t eat solid foods, although he will lick them – the Wolfords joke about keeping an eye on your potato chip bowl – but, unlike most kids with CFC, Stone doesn’t have a gastric feeding tube. Instead, Melinda has invented a smoothie that combines things like PediaSure and whey protein that Stone drinks in four-ounce doses, the most he can handle.
He can walk and carry things and express himself through pointing and crying and, in a limited way, speaking. He loves movies and books and cars and jumping on the bed and wrestling his dad. Every morning, he gets the newspaper and the mail — “He just thinks he’s the biggest man ever,” Melinda said — and likes to turn on the trash compactor and the microwave and, especially, the dishwasher.
“He’s really a helper,” Melinda said. “I believe he understands way more than he’s able to express.”
A SISTER FOR STONE
Soon after Stone was born, the Wolfords talked with doctors about having another child. They were understandably concerned. But the doctors assured them there was an almost nonexistent chance of having another child with CFC. There’s only one documented case involving siblings with CFC and they were twins.
As devout Christians — they have devotionals each morning — the Wolfords bathed the decision in prayer and, ultimately, decided to try. This time, Melinda didn’t sweat every detail of her pregnancy. And when she was eight months along, she got her picture taken with Stone hugging her stomach. It’s Wolford’s favorite, and it hangs in the center of a framed collage in their kitchen.
One month later, she gave birth to a healthy baby girl named Marlee. She’s now 2-and-a-half.
“They’re buddies,” said Wolford, grinning.
WIFE MAKES IT WORK
A few years ago, the Wolfords started the “No Stone Unturned Foundation,” dedicated to assisting families of children with neurological problems, increasing awareness of CFC Syndrome and raising money for research. (You can learn more at www.nostonefoundation.org.)
Melinda chats with other CFC parents online. They meet with doctors and researchers at a CFC conference every other year, giving the medical community a chance to exchange notes and test the same kids over time. As a college football coach, Wolford doesn’t get as much time with his family as he’d like and being hired as YSU’s new head coach in December only added to that burden. He didn’t even see his family for the first few months as they stayed back in South Carolina (his previous coaching spot) until moving here in April.
He credits Melinda for making it work.
“I’m constantly surprised and amazed by her,” he said. “If I didn’t have Melinda, I don’t know what I’d do.”
For her part, Melinda said Wolford is always available when she needs him. He gives her quality time in place of quantity time.
“You can spend a lot of time with someone and not have a good relationship,” she said. “When we are together, we have a damn good time. If we fight, we fight fast and get it over with.
“One thing I’ve learned with Eric is, once it’s over, it’s over. He’s always said, ‘It’s a new day.’”
After years of moving, they hope to make the Youngstown area home for many years, if not forever. They call their house in Liberty Township “their sanctuary.” They rave about the restaurants and cost of living. On Wednesday, Melinda sent Wolford a text message with a picture of Mill Creek Park, thanking him for bringing her here.
“Really, this is a dream job for us,” she said.
They will never have a dream life, of course, but they’ve survived the nightmares. They credit Stone for making them better parents and better people.
Theirs is a crazy, wonderful, exhausting, exhilarating life, they say.
(With, you know, a little extra mustard.)