Bay Side
December 25th, 2003, 10:13:35 AM
www.buffalonews.com
There's a fine line between denial and faith.
Chris and Lisa Taylor aren't sure which device helped them cope with their crisis.
"Maybe we were being naive about the situation because it was our child," Chris Taylor said, wiping the sweat from his forehead after a Buffalo Sabres practice in HSBC Arena.
"But we honestly believed that he was going to be OK."
The Taylors couldn't believe their fortune on Aug. 10, 1996. That was the day Nick was born, making them parents for the first time.
Four days later the Taylors celebrated their third wedding anniversary. Then Chris was to report to the New York Islanders' training camp, where he had a shot to make the team after two seasons of NHL spot duty and sparkling minor-league production.
But all of the Taylors' joy was obliterated with a devastating blow.
There was a lump on Nick's head from the forceps used during Lisa's arduous two-day delivery. Doctors performed a precautionary scan.
"That's when they saw a lot of black where his brain should be," Chris said.
Nick was born without three-quarters of his brain. Only the frontal lobe had fully developed. Two small portions had formed alongside, but the entire back of his brain was missing. A large cyst filled the void in his skull.
"The diagnosis from the neurosurgeon was that he was going to be blind, in a wheelchair, in a vegetative state, more or less," Chris said. "His life expectancy was probably 7 or 8 years old."
Nick is 7 years old now, and this morning in his family's suburban Rochester home he opened up gifts from Santa Claus like most kids his age - by himself.
And he played. And he talked. And he walked. And he ran around the house with yuletide glee.
Sadly, his joy will be over soon.
Nick will have to report back to his regular first-grade class at Chestnut Ridge Elementary in Chili after the holiday break. Of course, he can always look forward to playing ice hockey and snowmobiling.
To see him tearing around like a maniac with his 5-year-old sister, Samantha, and Daniel Briere's little boys after Tuesday night's tie with the Ottawa Senators, no one would have a clue of Nick's plight.
"He's living a life that he shouldn't be living," his father said. "It's incredible."
Chris Taylor admits he's not a religious man, but he and his wife can't help but describe Nick's development as anything short of miraculous.
"It was extremely difficult for us to comprehend what was wrong with our little boy," Lisa Taylor said. "We had to believe, as bleak as the doctor said the situation was, that he was going to be fine."
The line between denial and faith was blurry, indeed.
After all, the Taylors seemed to be living a storybook tale until that point.
They had met as teenagers while working at a retirement home in Stratford, Ont. Chris set up his older brother with Lisa's sister, Jodi. Tim Taylor, now a Tampa Bay Lightning forward, married Jodi.
Chris and Lisa continued to see each other at family functions. Then Chris began playing junior hockey in London, Ont., where Lisa was going to college.
It was serendipitous. Even on the ice, it appeared as though Chris could do whatever he wanted. The sky was the limit.
"I can't put into words how my wife and I felt when the doctor told us about Nick," Chris said. "We were in shock. I mean, it was our first child."
Dr. Simon Levine is the Taylors' neurologist in London, Ont. He was the one who delivered the bad news about Nick's condition, which is so rare it didn't have a clinical name.
When Levine attends medical conferences, he will display to his colleagues images of Nick's brain and solicit their diagnoses. Levine then will astound his audience by showing home videos of Nick performing functions believed impossible.
"It's unexplainable," Chris said. "They're totally mystified. You can't even read about it in books."
The brain's frontal lobe handles motor skills, behavior, socializing and expressive language. The occipital lobes, which Nick is without, mostly are responsible for vision.
The other areas of Nick's brain were so underdeveloped doctors prepared the Taylors for the worst.
"We just leaned on each other and battled through it," Chris said. "We didn't believe the doctor. We saw the way he was looking at us at just two or three weeks old, and then it was three months.
"The doctor warned us "Pretty soon the brain stem is going to give out and he's going to go downhill from there.' We said "No, you don't understand.' We believed he could see and understand what we were saying."
Nick's vision is fine today with the help of wire-rimmed eyeglasses. He looks like he could be Harry Potter's stunt double.
"Dr. Levine knows of only two people around the world who can see without the back part of their brain," Chris said.
As amazing as Nick's development has been, he isn't a completely typical 7 year old. A tube was inserted into his head to drain the continual fluid buildup in the cyst. He has undergone close to 20 surgeries.
"He's been in the hospital a lot, but he's been a fighter," Chris said.
Nick requires an aid to help him at school. His vocabulary is at around 100 words and growing with the help of a speech therapist.
He also attends occupational therapy, where he learns simple tasks most of us take for granted, such as walking up the stairs with alternating strides rather than taking each step two feet at a time.
"You really start to appreciate the smaller things in life," Lisa said. "Sometimes you hear parents complain that their kids don't have a 99.9 average in school or they're not at the top of the class. We get excited when he says "Mommy' or "Daddy.' "
Nick gets some special support from his little sister, too.
"Samantha is like a little protector for him," Chris said. "When we go somewhere and another kid might get upset, like, "Nick won't talk to me.' Samantha will say "Oh, he has special needs. His name is Nick and he loves to play but he has a hard time talking.'
"It's so touching to see our daughter help out her big brother. She's so compassionate. It's unbelievable."
The Taylors held back Nick for an extra year of kindergarten because they estimate their son's development is about a year and a half behind schedule.
"But he plays at a 7 year old's level," Chris said.
If Nick could put the words together, he would probably be the first to admit his father has been enjoying an unlikely season.
The Sabres signed Chris Taylor over the summer for depth, with the intention of placing him with the Rochester Americans. But he stayed with the Sabres after Tim Connolly sustained a preseason concussion and the Montreal Canadiens picked up Steve Begin in the waiver draft.
Taylor has played 33 games - four fewer than his NHL season-high - as the Sabres' third- and fourth-line center. He has two goals and four assists and is one of the team's top penalty killers.
"I come here and work hard because I know how hard it is for him just do get dressed," he said. "That's why I try to not take anything for granted.
"We want to get him to a level where he can go off by himself and live a regular life. And if not, it's no big deal. He'll just stay with us forever."
There's a fine line between denial and faith.
Chris and Lisa Taylor aren't sure which device helped them cope with their crisis.
"Maybe we were being naive about the situation because it was our child," Chris Taylor said, wiping the sweat from his forehead after a Buffalo Sabres practice in HSBC Arena.
"But we honestly believed that he was going to be OK."
The Taylors couldn't believe their fortune on Aug. 10, 1996. That was the day Nick was born, making them parents for the first time.
Four days later the Taylors celebrated their third wedding anniversary. Then Chris was to report to the New York Islanders' training camp, where he had a shot to make the team after two seasons of NHL spot duty and sparkling minor-league production.
But all of the Taylors' joy was obliterated with a devastating blow.
There was a lump on Nick's head from the forceps used during Lisa's arduous two-day delivery. Doctors performed a precautionary scan.
"That's when they saw a lot of black where his brain should be," Chris said.
Nick was born without three-quarters of his brain. Only the frontal lobe had fully developed. Two small portions had formed alongside, but the entire back of his brain was missing. A large cyst filled the void in his skull.
"The diagnosis from the neurosurgeon was that he was going to be blind, in a wheelchair, in a vegetative state, more or less," Chris said. "His life expectancy was probably 7 or 8 years old."
Nick is 7 years old now, and this morning in his family's suburban Rochester home he opened up gifts from Santa Claus like most kids his age - by himself.
And he played. And he talked. And he walked. And he ran around the house with yuletide glee.
Sadly, his joy will be over soon.
Nick will have to report back to his regular first-grade class at Chestnut Ridge Elementary in Chili after the holiday break. Of course, he can always look forward to playing ice hockey and snowmobiling.
To see him tearing around like a maniac with his 5-year-old sister, Samantha, and Daniel Briere's little boys after Tuesday night's tie with the Ottawa Senators, no one would have a clue of Nick's plight.
"He's living a life that he shouldn't be living," his father said. "It's incredible."
Chris Taylor admits he's not a religious man, but he and his wife can't help but describe Nick's development as anything short of miraculous.
"It was extremely difficult for us to comprehend what was wrong with our little boy," Lisa Taylor said. "We had to believe, as bleak as the doctor said the situation was, that he was going to be fine."
The line between denial and faith was blurry, indeed.
After all, the Taylors seemed to be living a storybook tale until that point.
They had met as teenagers while working at a retirement home in Stratford, Ont. Chris set up his older brother with Lisa's sister, Jodi. Tim Taylor, now a Tampa Bay Lightning forward, married Jodi.
Chris and Lisa continued to see each other at family functions. Then Chris began playing junior hockey in London, Ont., where Lisa was going to college.
It was serendipitous. Even on the ice, it appeared as though Chris could do whatever he wanted. The sky was the limit.
"I can't put into words how my wife and I felt when the doctor told us about Nick," Chris said. "We were in shock. I mean, it was our first child."
Dr. Simon Levine is the Taylors' neurologist in London, Ont. He was the one who delivered the bad news about Nick's condition, which is so rare it didn't have a clinical name.
When Levine attends medical conferences, he will display to his colleagues images of Nick's brain and solicit their diagnoses. Levine then will astound his audience by showing home videos of Nick performing functions believed impossible.
"It's unexplainable," Chris said. "They're totally mystified. You can't even read about it in books."
The brain's frontal lobe handles motor skills, behavior, socializing and expressive language. The occipital lobes, which Nick is without, mostly are responsible for vision.
The other areas of Nick's brain were so underdeveloped doctors prepared the Taylors for the worst.
"We just leaned on each other and battled through it," Chris said. "We didn't believe the doctor. We saw the way he was looking at us at just two or three weeks old, and then it was three months.
"The doctor warned us "Pretty soon the brain stem is going to give out and he's going to go downhill from there.' We said "No, you don't understand.' We believed he could see and understand what we were saying."
Nick's vision is fine today with the help of wire-rimmed eyeglasses. He looks like he could be Harry Potter's stunt double.
"Dr. Levine knows of only two people around the world who can see without the back part of their brain," Chris said.
As amazing as Nick's development has been, he isn't a completely typical 7 year old. A tube was inserted into his head to drain the continual fluid buildup in the cyst. He has undergone close to 20 surgeries.
"He's been in the hospital a lot, but he's been a fighter," Chris said.
Nick requires an aid to help him at school. His vocabulary is at around 100 words and growing with the help of a speech therapist.
He also attends occupational therapy, where he learns simple tasks most of us take for granted, such as walking up the stairs with alternating strides rather than taking each step two feet at a time.
"You really start to appreciate the smaller things in life," Lisa said. "Sometimes you hear parents complain that their kids don't have a 99.9 average in school or they're not at the top of the class. We get excited when he says "Mommy' or "Daddy.' "
Nick gets some special support from his little sister, too.
"Samantha is like a little protector for him," Chris said. "When we go somewhere and another kid might get upset, like, "Nick won't talk to me.' Samantha will say "Oh, he has special needs. His name is Nick and he loves to play but he has a hard time talking.'
"It's so touching to see our daughter help out her big brother. She's so compassionate. It's unbelievable."
The Taylors held back Nick for an extra year of kindergarten because they estimate their son's development is about a year and a half behind schedule.
"But he plays at a 7 year old's level," Chris said.
If Nick could put the words together, he would probably be the first to admit his father has been enjoying an unlikely season.
The Sabres signed Chris Taylor over the summer for depth, with the intention of placing him with the Rochester Americans. But he stayed with the Sabres after Tim Connolly sustained a preseason concussion and the Montreal Canadiens picked up Steve Begin in the waiver draft.
Taylor has played 33 games - four fewer than his NHL season-high - as the Sabres' third- and fourth-line center. He has two goals and four assists and is one of the team's top penalty killers.
"I come here and work hard because I know how hard it is for him just do get dressed," he said. "That's why I try to not take anything for granted.
"We want to get him to a level where he can go off by himself and live a regular life. And if not, it's no big deal. He'll just stay with us forever."