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Cubby Wax
TIM MURPHY Press Sports Editor
Cubby Wax likes to watch his friends hit. The words don't come from his mouth. Instead, a young boy's computer-generated voice speaks them robotically, after Cubby has typed them slowly with his right hand on an onscreen keyboard that attaches to his wheelchair.
That right hand, from the elbow down, is among the few areas where the 7-year-old Ridgefielder has movement. He breathes through a ventilator and is fed through a tube. He can make sounds but not form words. He can't walk.
When Cubby was five months old, his mother, Laura, noticed that he couldn't turn his head and that his cry was weak. Tests revealed he had spinal muscular atrophy, a currently incurable genetic disorder that destroys the nerves that control voluntary muscle movements. Cubby had Stage I, the most severe form. Without the tracheotomy he underwent shortly after diagnosis he likely would not have lived past age 2. Since leaving Yale-New Haven right before his first birthday, Cubby hasn't been re-admitted to a hospital. And cognitively he is fine; SMA doesn't affect the brain.
But it treats the muscles as archenemy, preventing them from developing and causing deterioration, leaving the host physically adrift. Cubby has two nurses who help his mother provide the necessary 24-hour care, which includes periodically rolling his body in bed during the night to prevent tightening. There is a second ventilator to guard against malfunctions, and plenty of batteries to combat power outages. "It's a scary feeling," said Laura Wax. "We're relying on machines."
Although he is stable now, Cubby's long-term prognosis is uncertain. "The doctors don't really know what to expect," said Ms. Wax, who teaches middle school in Norwalk. "But he's doing fine right now. Every day is a gift."
This day, a tar-curdling hot one in mid-August, is particularly good for Cubby. His New York Mets are comfortably ahead in the National League East Division, and he wears his blue Mets hat proudly. Carlos Delgado is his favorite player. A few weeks before it was Jose Reyes. A few weeks before that Carlos Beltran. David Wright? Still awaiting his turn.
"I am a Mets fan, so he got that from me," said Ms. Wax. "He lives and breathes baseball." This spring, he played it.
Cubby was a member of Bill Holowaty's Baseball Camp team that competed in the Single A division (ages 6-7) in the Ridgefield Little League. The division features a pitching machine for batters, but when Cubby came to the
plate a rival coach pitched and one of his team's coaches held the bat, often in Cubby's hands. Teammates served as pinch runners, and the position was ocean-deep in applicants.
"Everyone wanted to run for Cubby," said Ron Hynes, the team's manager. "It was a big treat for them."
"One time a little boy ran for him and eventually came around to score a run," said Ms. Wax. "A teammate said, .Nice job' to him and he said, .I didn't do anything, Cubby hit the ball.'"
When his team was in the field, Cubby and his wheelchair were pushed to second base, his position. A coach stood next to Cubby and fielded the grounders and pop-ups that came his way. With his limitations, Cubby could have played in Little League's Challenger Division, which caters to kids with mental and physical disabilities. But he and Ron Hynes's son, Ethan, have been friends since kindergarten, and Ms. Wax thought it might be good for Cubby to play with him and other classmates from Branchville Elementary School.
"At first we weren't sure how it would work out, with Cubby being on the field in a wheelchair," said Ms. Wax. "But everyone was so helpful and understanding, from the league director (Joe Chelednik) to Ron (Hynes) and the other coaches and the players. These 6- and 7-year-olds showed compassion beyond their years for my son. They accepted him, cheered for him and assisted him and yet treated him just like any other boy on that team."
Ms. Wax said that the experience also helped her son grow up. "Outside of school, he is usually with adults," she said. "This put him in a different type of social position and he adapted to it. As a parent, it was a very proud moment for me."
Cubby's room at the house he lives in with his mother and maternal grandparents, Mary and Joseph Bierwith - Laura and her husband divorced several years ago - is a testament to his infatuation with all things baseball. There are various pictures of Mets players, several signed baseballs and an extensive card collection. A life-sized cutout poster of Derek Jeter adorns a doorway; it is a gift from Cubby's grandmother, a Yankees fan angling for a change of teams.
It isn't likely. Cubby has followed the Mets since he was 3, and when the television gets switched to the Yankees between innings of Mets games, he lets the person with the remote know when it's time to go back.
"His big dream is to someday go to a Mets game and meet the players," said Ms. Wax. "If that happens he might not think about anything else for a few years."
This Monday, Cubby returned to Branchville to start third grade. He uses the computer to communicate with teachers and students. With his right hand, he is able to type for several hours before fatigue sets in and he needs a break. A nurse takes him to school and stays with him throughout the day. Some of the same kids eager to run for him on the base paths are among those who clamor to push him along school hallways.
"He's always gotten along well with other kids, so he loves going to school," said Ms. Wax. "Everyone seems to know him. When we go down Main Street, kids yell hello from cars. I feel like a groupie." Next spring, Cubby will be eligible to play one more season in the Single A Division. His mom isn't sure whether he will do that or join the Challenger Division. It looks to be one or the other.
When asked whether he wants to play again, Cubby Wax doesn't bother typing his response. With his right hand, he immediately makes a familiar up and down motion. The motion that means yes.
Cubby Wax likes to watch his friends hit. The words don't come from his mouth. Instead, a young boy's computer-generated voice speaks them robotically, after Cubby has typed them slowly with his right hand on an onscreen keyboard that attaches to his wheelchair.
That right hand, from the elbow down, is among the few areas where the 7-year-old Ridgefielder has movement. He breathes through a ventilator and is fed through a tube. He can make sounds but not form words. He can't walk.
When Cubby was five months old, his mother, Laura, noticed that he couldn't turn his head and that his cry was weak. Tests revealed he had spinal muscular atrophy, a currently incurable genetic disorder that destroys the nerves that control voluntary muscle movements. Cubby had Stage I, the most severe form. Without the tracheotomy he underwent shortly after diagnosis he likely would not have lived past age 2. Since leaving Yale-New Haven right before his first birthday, Cubby hasn't been re-admitted to a hospital. And cognitively he is fine; SMA doesn't affect the brain.
But it treats the muscles as archenemy, preventing them from developing and causing deterioration, leaving the host physically adrift. Cubby has two nurses who help his mother provide the necessary 24-hour care, which includes periodically rolling his body in bed during the night to prevent tightening. There is a second ventilator to guard against malfunctions, and plenty of batteries to combat power outages. "It's a scary feeling," said Laura Wax. "We're relying on machines."
Although he is stable now, Cubby's long-term prognosis is uncertain. "The doctors don't really know what to expect," said Ms. Wax, who teaches middle school in Norwalk. "But he's doing fine right now. Every day is a gift."
This day, a tar-curdling hot one in mid-August, is particularly good for Cubby. His New York Mets are comfortably ahead in the National League East Division, and he wears his blue Mets hat proudly. Carlos Delgado is his favorite player. A few weeks before it was Jose Reyes. A few weeks before that Carlos Beltran. David Wright? Still awaiting his turn.
"I am a Mets fan, so he got that from me," said Ms. Wax. "He lives and breathes baseball." This spring, he played it.
Cubby was a member of Bill Holowaty's Baseball Camp team that competed in the Single A division (ages 6-7) in the Ridgefield Little League. The division features a pitching machine for batters, but when Cubby came to the
plate a rival coach pitched and one of his team's coaches held the bat, often in Cubby's hands. Teammates served as pinch runners, and the position was ocean-deep in applicants.
"Everyone wanted to run for Cubby," said Ron Hynes, the team's manager. "It was a big treat for them."
"One time a little boy ran for him and eventually came around to score a run," said Ms. Wax. "A teammate said, .Nice job' to him and he said, .I didn't do anything, Cubby hit the ball.'"
When his team was in the field, Cubby and his wheelchair were pushed to second base, his position. A coach stood next to Cubby and fielded the grounders and pop-ups that came his way. With his limitations, Cubby could have played in Little League's Challenger Division, which caters to kids with mental and physical disabilities. But he and Ron Hynes's son, Ethan, have been friends since kindergarten, and Ms. Wax thought it might be good for Cubby to play with him and other classmates from Branchville Elementary School.
"At first we weren't sure how it would work out, with Cubby being on the field in a wheelchair," said Ms. Wax. "But everyone was so helpful and understanding, from the league director (Joe Chelednik) to Ron (Hynes) and the other coaches and the players. These 6- and 7-year-olds showed compassion beyond their years for my son. They accepted him, cheered for him and assisted him and yet treated him just like any other boy on that team."
Ms. Wax said that the experience also helped her son grow up. "Outside of school, he is usually with adults," she said. "This put him in a different type of social position and he adapted to it. As a parent, it was a very proud moment for me."
Cubby's room at the house he lives in with his mother and maternal grandparents, Mary and Joseph Bierwith - Laura and her husband divorced several years ago - is a testament to his infatuation with all things baseball. There are various pictures of Mets players, several signed baseballs and an extensive card collection. A life-sized cutout poster of Derek Jeter adorns a doorway; it is a gift from Cubby's grandmother, a Yankees fan angling for a change of teams.
It isn't likely. Cubby has followed the Mets since he was 3, and when the television gets switched to the Yankees between innings of Mets games, he lets the person with the remote know when it's time to go back.
"His big dream is to someday go to a Mets game and meet the players," said Ms. Wax. "If that happens he might not think about anything else for a few years."
This Monday, Cubby returned to Branchville to start third grade. He uses the computer to communicate with teachers and students. With his right hand, he is able to type for several hours before fatigue sets in and he needs a break. A nurse takes him to school and stays with him throughout the day. Some of the same kids eager to run for him on the base paths are among those who clamor to push him along school hallways.
"He's always gotten along well with other kids, so he loves going to school," said Ms. Wax. "Everyone seems to know him. When we go down Main Street, kids yell hello from cars. I feel like a groupie." Next spring, Cubby will be eligible to play one more season in the Single A Division. His mom isn't sure whether he will do that or join the Challenger Division. It looks to be one or the other.
When asked whether he wants to play again, Cubby Wax doesn't bother typing his response. With his right hand, he immediately makes a familiar up and down motion. The motion that means yes.