For family living with ALS, Father's Day will be filled with love, hope
June 16, 2010 at 1:16 a.m.
WHAT IS ALS?
Amyotrophic lateral sclerosis, often called Lou Gehrig's disease, is a motor nueron disease that affects nerve cells in the brain and the spinal cord. When the motor neurons die, people lose control of voluntary muscles and can eventually become paralyzed.
Based on U.S. population studies, a little more than 5,600 people in the U.S. are diagnosed with ALS each year.
It is estimated that as many as 30,000 Americans have the disease at any given time.
For more information or to donate for a cure, visit alsa.org.
SOURCE: ALS ASSOCIATION
Sunday morning at the Foxes is still.
W.J. Fox, a white-haired gentleman, sits in his red leather chair - the cushy kind, angled facing the TV, only grandfathers and dads seem to own. It groans in protest when Fox reaches for his coffee.
It's 8:15 a.m., and he's already sipped through his first cup.
The television murmurs news about the Gulf oil spill while mid-morning rays of sunlight creep into the living room. The 71-year-old waits while the family dresses for church.
"It's like a great sigh," Fox said. His droopy eyes are calm, like a quiet man of simple wisdom. "You made it through the week."
The Fox family tries to keeps things positive these days. The baby monitor in the kitchen gurgles sounds of a 12-year-old flat-ironing her hair and a son helping his father get ready in another room.
Fatherhood for W.J. Fox used to mean traveling around the country with a pop-up camper and his wife, Peggy.
In 2008, reality changed the course of fatherhood for Fox when his 42-year-old son, Craig Fox, was diagnosed with amyotrophic lateral sclerosis, or ALS, a rare disease affecting less than 1 percent of the population and three people in Victoria.
The former Union Carbide Corps. machine repairman knows about fixing things, but not always problems dealing with people.
"Sometimes, you can fix things real quick, but that's not always the case," he said.
ALS, also known as Lou Gherig's disease, is like that.
The disease is fatal; those diagnosed are given three to five years to live. There is no known cure.
The disease for W.J. Fox meant fatherhood - round two.
Craig Fox, a retired electrical instruments designer who now lives with his parents, is quirky and talkative. He quickly opens his heart to strangers.
ALS is known by researchers as the "Nice Guy's Disease" because it affects so many people with positive outlooks. The disability renders them unable to use their bodies in certain ways, and slowly breaks down the neurons used to operate voluntary muscles. The ability to move limbs, speak and finally breathe slowly trickles away.
But the phenomenon with these people is, even in the face of a terminal illness, those with it don't budge; their faith in humanity, in hope for a cure remains as steadfast as the disease progression. Craig Fox is one of those.
Fox's days are simple: wait to be moved, wait to be fed, scratched, bathed.
The former Victoria High School Stingrays football player once used his 200-plus-pound, 6-foot frame to win games. Now his arms, affected by the disease, flop at his sides when he walks or rest like dead weight when he sits. His shoulders sloop and neck falters.
"Ain't nothing easy about any of this, but it's called your life struggles," he said. "Some people have financial struggles. Some people have addiction struggles . everybody's got struggles, but if you let it get to you, then the struggles win."
Craig is a widowed single dad. His wife, Nancy, died of a heart attack in 2005, and he has raised his two children, Bailey, 12, and Tanner, 15, with the help of family and friends.
Fatherhood hasn't been easy either, as Craig struggles to remain active in his children's lives.
"Understanding that you can actually love somebody beyond reason," Craig said, explaining fatherhood. "What I mean by that is ... no matter what they do, your love is always there for them."
Sunday is Craig's birthday and with it comes a celebration of life and another year of being a dad.
It was about 3:15 a.m. and Tanner, then an eighth-grade football player, was awake.
His father was readying for work, but everything - a button, pulling on a jacket - was a chore. Shaving eventually became something Tanner would do for his father before he even did it for himself.
Today, Tanner, now 15, presses for independence and staves off summer boredom along with his 12-year-old sister Bailey.
Summer offers pizza, Cokes and more TV.
"We just kind of try to live everyday to our fullest," Tanner said. "Well, you can't say we live every moment to the fullest. During the summer, the kids want to relax and kick back but then you have a father that you have to take care of. You have to keep your room clean and then you can go and have fun."
Tanner and his father sit next to each other like mirror images, with 30 years between them.
In some ways, Tanner believes he's assumed the role of a father.
"We do things for each other," he said. "Dad's usually the one with the quick thinking. Poppa's usually the one that's the driver, and I'm usually the one that's the strong one of the family."
A nurse arrives for bathing.
"Somebody get me up," Craig said, his neck rolling at an awkward angle.
Tanner rolls his eyes, sets down his pizza crusts and sighs. "I'll do it," he said.
With Sunday morning settles in hopes for the week, new days and possibilities.
W.J.'s cup of coffee is empty, his eyes soft as he helps Peggy Fox latch a bracelet on her arm.
In many ways, fatherhood is the same as what keeps the family going.
"You hope they learn the good things that you do," he said. "You always hope for the best."
His droopy eyes squeezed into a smile, and the man who claims to not know much about solving people problems, calls to mind the one thing he believes will see the family through.
"The big word is love," he said. "Without that, the rest of it goes to pot."
A Father's Strength: An Ongoing Series
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