Super Special

Joshua Frase has never tasted an apple or screwed up his face in disgust when a Brussels sprout crossed his lips. He hasn’t discovered the sweet joy of a cookie or pucker power of fresh-squeezed lemonade.

For his entire life, which will reach four years, God willing, next month, Joshua has received his nourishment through a feeding tube. Joshua won’t ever walk or throw a football. He won’t be able to sit in the stands and watch his dad, Baltimore Raven defensive end Paul Frase, play football.

For the last week, in fact, Joshua has been in a hospital near Jacksonville, Fla., fighting for his life again, struggling to breathe with muscles weakened by a strange and unrelenting genetic illness.

It is the utter irony that sometimes pierces Paul Frase’s heart. For so much of the success that Frase has enjoyed has come from his physical gifts, from his strong legs and arms, from his ability to be quick and powerful.

And for so much of his life Frase has needed to be selfish. In the way any elite athlete must keep himself focused on his own body, on his own health and well-being, on getting enough rest and proper food, on having enough time to work out and get to practice.

Yes, Frase says, for most athletes who reach the professional level in the United States, life from the time of grade school is one of receiving special attention.

From parents whose free time is spent getting the child to practice and to games; from coaches in high school and college who tell the athlete he is the greatest; from the recruiters who beg the athlete to come to their school and then the agent who grovels in front of the athlete for the honor of getting him a big contract; from the fans who feel privileged to receive something as small as a smile.

Then the athlete has a Joshua come into his life. A child is born and he can move only the muscles in his right hand. The doctors tell the mother that Joshua will be lucky to live the night. And when he does, that Joshua will never sit up; and when he does that Joshua can’t possibly make it past his second birthday. And when he does, the doctors don’t say much any more, but the parents know the statistics. That no child born with myotubular myopathy has lived past the age of 6.

Before his son must return to the hospital, Paul Frase sits in the living room of his comfortable three-level home that seems to be all windows with views of the Atlantic Ocean. His sweet son, who is sitting up on his own and who scoots around the house with a special walker, softly touches the fingers of a visitor and demands a smile before he is taken for a nap. Paul Frase smiles a little and says, “The whole way you think of the world changes when you are blessed with a child like Joshua.”

New Perspective

The Denver Broncos and Atlanta Falcons have arrived in Miami and will be celebrated this week of Super Bowl XXXIII as the best of the best.

Did you know that Mark Rypien should be in Miami this week? Rypien, once a Super Bowl quarterback for the Washington Redskins, had signed a contract to be Chris Chandler’s backup in Atlanta this season.

But that was before Rypien’s 3-year-old son Andrew suffered a June relapse of the brain cancer that Mark and Annette Rypien were hoping had been eradicated a few months earlier. Andrew Rypien died of brain cancer Aug. 22 in the arms of his mother, who was newly recovered from cervical cancer herself.

When Andrew suffered a massive seizure last June, a seizure that led to the discovery of a new, larger cancerous tumor than one removed a year earlier, Rypien realized there would be no football season for him.

So often we hear only of how spoiled and pampered NFL or NBA or major league baseball players can be. Of how they lead lives filled with tremendous wealth and women on demand, of fancy cars and fancier houses, of unending adulation and of day after day of nothing but good luck and even more fortune.

But then you hear the story of the Rypien family. And maybe that puts a small dent in the image.

Then another dent. Because you learn about Doug Flutie and his son Doug Jr., Dougie to the family. A 7-year-old with autism, who was talking up a storm when he was 2 and then just quit talking as the brain disorder that is autism took over.

The fairy-tale life is all many people knew about Flutie. The Hail Mary pass at Boston College. The struggles of his early time in the NFL to the Canadian Football League and then to the Buffalo Bills, where he went from backup to starter to hero, leading the Bills to preposterous win after unlikely win and right into the playoffs.

There he was, dark-haired, handsome, with a lovely wife, Laurie, and all of Buffalo ready to be his servant. Which means nothing to Dougie, or to Doug and Laurie as they try every day to reach inside Dougie’s head, to somehow touch his soul.

When the diagnosis of autism was handed to Doug and Laurie five years ago, Laurie says that there was no period of mourning or railing at God for the unfairness of it all. “We reacted sort of like Doug plays quarterback. We scrambled into action, trying to find out all the facts.”

Life became different for the Fluties. Laurie would stay at the family home near Boston during the season so that Dougie could attend a special school. There was time spent finding tutors and doctors and doing research on the condition.

As the Fluties began to learn about autism and how it cost $450 for a special tricycle that Dougie could ride or $40 for a special fork that might allow Dougie to feed himself, it occurred to the Flutie family to wonder how it was that others less blessed with material wealth but who must deal with an autistic child could afford all these costly appliances that made life easier for the child.

And so was started the Doug Flutie Jr. Foundation for Autism. Flutie got the idea of having a charitable foundation in honor of his son from another Buffalo quarterback.

Jim Kelly’s son Hunter, who will be 2 years old on Valentine’s Day, has Krabbe’s disease, a degenerative condition that causes the disintegration of a part of the brain and inevitably leads to death.

Last week Kelly hosted the second “All Star Evening for Hunter’s Hope,” which is the foundation the family organized a year ago. It was held at the All Star Cafe in New York and Doug Flutie attended.

So did Miami Dolphin quarterback Dan Marino, whose 9-year-old son Michael is autistic. And former Cincinnati Bengal quarterback Boomer Esiason, whose 7-year-old son Gunnar has cystic fibrosis.

It’s the curse of the quarterbacks, it has been said of these men who play the glamour position. Quarterbacks aren’t the only NFL players who must deal with the problems of a very special child, but it is the quarterbacks’ stories that are most well known.

Football fans around the country would see Gunnar Esiason in a luxury box in Cincinnati last year, a blond-haired youngster with a wide smile just like his father, but a child who didn’t dare sit outside because the cold air would place a burden on lungs clogged with mucus, the evil left by cystic fibrosis.

We’ve all heard about Flutie Flakes now and about the Doug Jr. Foundation. Many know of the Miami Children’s Hospital Dan Marino Center, a facility built with the fund-raising help of Marino to provide comprehensive care to children with autism, diabetes and other chronic medical needs.

But we don’t hear of so many others. Others like Paul Frase. And like Kurt Warner.

Family Bond

Kurt Warner is 27. He wasn’t a starting quarterback until his senior year at Northern Iowa, which certainly didn’t indicate he was on a path to the NFL. After graduation, Warner went to the Arena League. He played for fun, for a middle-class salary and to keep alive his dream of playing in the NFL.

While Warner was playing in the Arena League, he met a lively, petite woman who was a great dancer. Her name was Brenda, she was divorced, she had two children from that marriage and Warner dismissed comments from his buddies when they said Brenda, four years older than Kurt, was obviously out to nab herself a new dad for these kids.

Warner knew better. He knew that Brenda was a warm and loving mother, a great listener, a woman who found a special peace in her Christianity.

This peace is a blessing that Brenda cannot overestimate.

During her first marriage, Brenda had a son named Zack and a daughter named Jesse. When Zack was 3 1/2 months old, his birth father, while taking Zack out of the bathtub, dropped the baby on his head. This was an accident, a tragic occurrence, but absolutely an accident.

When Brenda got her son to the hospital, doctors told Brenda that Zack had suffered traumatic brain injury and probably would not live out the night. And really, the doctors were whispering, it might be best if the lively, dark-haired little boy didn’t live. If he did, Brenda was assured, the brain trauma was so severe that it was unlikely Zack could have any kind of happy or productive life.

This did not stop Brenda from praying for her first-born to live, and Zack did live. Doctors would only give Brenda the worst-case scenarios. That Zack probably would never walk, talk or go to school. They could give her nothing concrete in the way of hope, but they could tell her that her son was blind because the part of the brain that controls the optic nerve was so badly damaged.

Brenda, who was in the Marines at the time of the accident, took her son home and decided that since the doctors couldn’t tell her anything for sure, she would believe there would be some things, many things, that Zack would eventually accomplish.

During this time, Brenda’s marriage fell apart. It wasn’t that her husband was unwilling to be part of Zack’s life, Brenda says, it was that he could not get over his guilt, and Brenda found it too exhausting to try to nurse her husband’s psyche and her son’s physical condition.

With Zack and his sister, Brenda moved back home to Iowa so she could accept help from her mother. It was in Iowa, about four years ago, that Brenda and Kurt met.

Immediately Brenda told Kurt about her children. About the vivacious Jesse. And about Zack. About how nothing came easily to Zack. That it was a triumph when Zack sat up about a year after his injury. That it was a miracle when Zack walked, when he said a word and then another. That it takes Zack an hour to eat a meal when the rest of the family is finished in 20 minutes but that it doesn’t matter because Zack is using the fork by himself.

When Brenda and Kurt got married, Kurt adopted Zack and Jesse. “I love those kids,” Kurt says simply. “Zack has brought a joy to my life that I could never have imagined.”

How is that? Where does that joy come from?

“I learn so many things from Zack,” Kurt says. He and Brenda are sitting in the living room of a small apartment in Creve Coeur Mo.

Kurt has just finished his first NFL season as the backup quarterback of the St. Louis Rams. When Brenda and Kurt moved from Iowa to St. Louis, they chose their apartment carefully. It is important to find a financially blessed school system because Brenda is determined to make sure Zack is offered every ounce of special assistance that he is legally due.

“You get so jaded in the NFL,” Kurt says. “You can get caught up in what kind of car you drive, what kind of house you have.” Brenda nods and says, “I go to games on Sundays and every wife has perfect hair and perfect clothes and perfect nails. But all that stuff is not important to us. Zack can’t see any of that stuff.”

Kurt nods now and continues. “To Zack, a new car could be some old Dodge Neon. As long as it sounds different and feels different, that’s a new car.

“As an athlete you are always so focused on everything being perfect. Then a little boy like Zack comes into your life and suddenly perfect isn’t important.”

The frustrating thing about brain injuries is that prognosis is uncertain. There are no absolutes for Zack, who is 9.

After being told that Zack was totally blind, Brenda and Kurt have found that Zack can see something. No one can tell how much, but Zack can sit at a special computer with enlarged images and see something. He goes to a regular grade school where he is provided with a special assistant, something that Brenda and Kurt had to fight for.

Zack doesn’t walk or run like a regular 9-year-old, but he walks. It may take him an hour to eat or to get dressed, but he feeds himself and dresses himself. “You fight impatience sometimes,” Brenda says. “We’re a family. Everybody has places to go. Sometimes you want to scream, ‘Hurry up,’ but then you stop and think a minute and realize how lucky you are. Because no one believed Zack could do any of this.”

The Warner’s have a new baby, Kade, who is 3 1/2 months old and whom Zack loves to watch over. Zack is attached to Kurt as well. He hates for Kurt to go away on trips, and Kurt hates to leave Zack.

“For athletes, all your life the focus is pretty much on you,” Kurt says. “When you’re in a game or at practice, your focus has to be totally on the sport. When I come home now, that’s all changed. Yeah, you learn to be a better person, I think.”

A Real Blessing

There are only about 140 known cases of myotubular myopathy in the world. Certainly Paul and Alison Frase had never heard of the muscular disorder.

But when their first child was born Feb. 2, 1995, when Joshua could barely draw in enough air to breathe, when he could flex only his right hand, the parents and doctors knew something was terribly wrong.

On the day that Joshua was born, doctors wanted to insert a breathing tube. Alison fought that suggestion blindly, for no reason other than her heart said to fight. It turns out that had the tube been inserted, Joshua would never have been able to breathe on his own.

It took three months for a diagnosis to be given to the Frases. It came in a phone call. The doctor gave the news and sent over three faxed pages of explanation. Alison and Paul read the meager information about myotubular myopathy. Only 50% of its victims live to be 2. None survive past school age. There is no cure and there is progressive degeneration.

“The literature was so dismal,” Alison says. “This is your son,” Paul says, “and you sit there and hear that there is no hope. Your world is ripped apart.

“As an athlete you’ve grown up knowing only healthy bodies and you get this news and you are in a state of denial. You wonder if life will ever be the same, ever be good. And then you have to get up and go on. Go to practice, go to work out, whatever. Whatever.”

Paul met Alison when he was with the Jets. Joshua was born when Paul was with the Jacksonville Jaguars. In 1997, Frase played with the Green Bay Packers, was waived in August 1998 and signed with the Ravens in October. Frase has played in an AFC championship game with the Jaguars and an NFC championship game with the Packers.

He has been at training camps and gotten a call from Alison that Joshua is in the hospital, near death. Before every trip, Paul thinks, “By the grace of God my son will be here when I come home.”

Meanwhile, Alison oversees Joshua’s daily care.

The day starts at 7 a.m., when Alison administers four series of breathing treatments to clear Josh’s lungs. He doesn’t have the muscle strength to do that himself. This is a half-hour process.

Then there is a bath and the first feeding. Every feeding takes an hour and a half. At 12:30, Josh needs another breathing treatment and then a second feeding and then a nap. After the nap there is another breathing treatment, another feeding and then it’s time for bed. This is every day.

A nurse helps out but, Alison says, “I’m pretty housebound.”

There is nothing but love in Alison’s voice when she says this. Because the Frase’s are happy in their house in Atlantic Beach, Fla., near Jacksonville, Paul has spent the last two seasons commuting between either Green Bay or Baltimore and home.

To give up his career was not an option. The health insurance provided by the NFL Players Assn. gives the Frase’s $2-million worth of care of Joshua.

It is not easy to have this life where your job is filled with men who operate at the highest levels of physical ability and then to fly home for a day spent with your little boy whose every little movement is a monumental occasion.

“This is such a cliche,” Paul says, “but you just take it one day at a time. You want to make every day a great one for Josh. We thank God for our time with him. How much time? We don’t know, but I am determined to enjoy my time with this child.”

Joshua loves playing with matchbox cars and even more than that he loves being put in the car with his dad and driving over the causeway to look at the boats. Or to be taken over to the beach where he watches Paul build sand castles and then giggles when Paul smashes the sand castles.

“When I think of my life before Joshua, so much of it seems selfish,” Paul says. “I have been blessed by being Josh’s father.”

Yes, Paul says, he knows that people look at pro athletes and only see the big salaries and lavish lifestyles. But when you watch the Super Bowl this Sunday, a game that Paul had almost played in a year ago, he would like you to think about Joshua. And about Dougie Flutie and Michael Marino and Hunter Kelly.

“These kids are all special,” Frase says. “They’ve made us all better people I think. They are what’s important.”