One week takes Fox family from home to hospital
Aug. 12, 2011 at 3:12 a.m.
Updated Aug. 13, 2011 at 3:13 a.m.
Another year, an ALS birthday surprise
Craig Fox was surprised with a party to celebrate his 43rd birthday.
ALS is a motor neuron disorder that affects nerve cells in the brain and the spinal cord
Symptoms: Weakness, wasting, and paralysis in the muscles of the limbs and trunk, as well as loss of control functions such as speech, swallowing and, eventually, breathing
Only about 30,000 people in the country have the disease, and there is no known cure.
In a population of 100,000 people, about five to six will be living with ALS.
People with ALS are often given three to five years to live, but can sometimes progress to death in a few months after a diagnosis.
Source: The ALS Association
Bailey Fox inspects her father's haircut, her 13-year-old hands grazing over the shadow left by his former sideburns.
W.J. Fox lifts and shifts his son's arms until they melt into the wheelchair armrests within centimeters of comfort.
Peggy Fox - she has been touching her son all morning.
She perches by her 43-year-old son's elevated bed and sneaks in a stroke to his arm, forehead, cheek, when she talks about how the days in the Fox household have changed.
A week later, life was to change even more dramatically.
Craig Fox can't walk. He is unable to use his hands, and his voice has weakened.
All of his daily activities depend on the gentle palms of Peggy, W.J., Bailey or his son, Tanner.
They use a sling and a lift to move Craig from the bed to the wheelchair, the wheelchair to the shower. And that's the extent of it.
"You don't have to be actually doing things to feel happy or peace," Craig says that afternoon.
He is Craig by 1 p.m., Peggy says.
In the mornings - the long mornings after even longer nights of interrupted sleep - Craig isn't himself.
Amyotrophic lateral sclerosis, or ALS, prolongs his waking hours in the elevated bed.
This Tuesday morning, Craig's neck splinters in half, tilting his head down toward the oxygen being fed through his nose.
The morning breathing treatments make him cough to the point of exhaustion, and the rotten egg smell of the breathing mist destroys any desire for a good meal.
The former 300-pound man hasn't eaten anything besides nutrition drinks and cheese and crackers since his 43rd birthday party in June.
Craig scrunches up his nose and says he can't even stand the smell of his mother's cooking anymore.
"You cook bad, I guess," Bailey chimes in.
Laughter and teasing have carried the family through the nearly four years since Craig's diagnosis.
"If you can't laugh at yourself, you shouldn't be able to laugh at anyone else," he says.
Craig even teases the family dog with an eye-controlled communication device called a Tobii. He's able to "freak out" Peanut, the Shih Tzu-Pekingese mix using just his pupils to give computerized commands.
The door to the Fox house swings open often, revealing plenty of humans to laugh with, too - nurses, his daily bathers, a chaplain, siblings, co-workers, the barber, and even a Schwan's delivery man.
"It makes a busier day, and I think it's a good busy day," Peggy says.
Though Craig's thinning body is drained easily, the visitors bring him noticeable energy.
That's Craig, his mother says time and again.
This day, in Craig's "man cave" - complete with a 50-inch flat screen TV and oversized, over-stuffed recliners - daily life swirls around the father. Laundry, errands, TV shows, mail, bill pay.
A corner of the Fox family home is transformed into a makeshift barber shop, complete with old weather stories and vacation tales. Craig gets the same haircut he's had for years, a shaved underside, lengthened at the top.
Though sitting among the ordinary, Craig's mind is in the extraordinary. This day, he talks a lot. And he talks about peace.
"Throughout the day, a lot of things can trigger your inner peace," he says. "You might be sitting in your apartment and something kind of makes you smile or laugh, even if it might be about yourself - that's your inner peace."
Craig finds the strength to gesture his neck toward a photo on the wall behind him.
It is a picture of Nancy, Craig's high school sweetheart, wife and mother of his kids. She died of a heart attack in 2005.
"Lately I've been looking back at me and Nancy, even way back before kids. They're fun times," he says, swallowing hard.
"It's all good, good healthy feelings."
Craig clears his throat with a deep cough that barely escapes his lips. He swallows, hard again, and says it isn't nostalgia he is feeling.
"Just appreciation," he says.
That was a week ago.
Now, Bailey is allowed to feel her father's face only a few times a day.
W.J.'s own arms rest on plastic wood, oily-looking from florescent lights above.
Peggy - she's beside her husband now, both facing the entrance to the ICU waiting room.
On Monday, an ambulance took Craig to Citizens Medical Center when he became sick to his stomach.
The stress eventually causes Craig's heart to stop beating - twice.
Doctors revive him, but his original lung infection has spread through his body.
"He wants to go home. But his home may not be our home. It may be His home," his mother says, pointing above.
Though so much has changed in a week, so much is the same.
There may not be plush chairs, the smell of a mother's cooking or Peanut resting beside his owners, but the sterile waiting room is somehow warm. The Fox family is there, praying, chatting, snuggling under blankets and allowing laughter to escape when it invites.
They are together.
Errands continue with Tanner going back-to-school shopping and Bailey getting a physical.
Visitors pour in, with Craig's team monopolizing the ICU waiting room.
He still communicates, spelling sentences with his eyes.
Craig even gives grief to one of his nurses about taking his blood.
He's stable now, improving with every update.
It's like Craig said a week earlier, when the barber's sheers buzzed by his ear, removing the sideburns.
"It ain't over 'til it's over."