GUILDERLAND — The everyday is extraordinary in the Fremante household.

Sunday morning, as the family arranges itself for a picture, Joe Fremante looks radiant. His face is cleanly shaven; his hair is freshly washed.

Because he has multiple sclerosis, a disease of the central nervous system in which gradual destruction in the brain or spinal cord causes progressively weaker muscles and loss of coordination, Fremante can’t do those everyday chores himself.

The extraordinary part is his two children do such chores for him, day in and day out.
Fremante’s son, also named Joe, who will turn 16 next week, shrugs when asked about shaving his father. "It’s no big deal," he says, adding that his father’s beard is harder to cut than normal hair since he’s shaved without cream for years.

The day began early on Sunday for the family of three — with a thud.
"At two o’clock, he was on the floor," said Joe. Gesturing to his sister, Julia, two years younger than he, Joe goes on. "She sleeps right in the room with him."
"So I can help Daddy," Julia finishes the sentence for her brother.
"Then she comes and gets me," says Joe.

Together they use a Hoyer Lift to get their father back in his chair.
Fremante spends 24 hours a day in what he calls his "scooter," a powered chair.

Parenting is at the center of his life.
He takes pride in being a father. "That’s probably when I got the luckiest," said Fremante.
"Most kids say, ‘My parents don’t understand me.’ My kids know every day I’ll have new knowledge of what makes them tick."
He remembers what it was like to be a kid. "You ask yourself in the middle of the night, looking up at the stars, ‘Does anybody really know who I am"’"

Give and take

The trio discuss their lives together in a straightforward way, without any sense of drama or any inkling that what they’re doing is remarkable. The father expresses no pity for himself and the kids show no resentment.

On a typical day, they get up at 6 a.m., sometimes after one or two wake-ups to set their father aright, fix his breakfast, and catch their bus for Guilderland High School at 6:50. Julia started ninth grade this year and Joe is a sophomore.

They mow the lawn and do the cooking. Julia mows the backyard and Joe the front, although lately he’s been doing the back, too, since his sister is busy with both tennis and gymnastics.
Joe is also the chief cook, although Julia chimes in, "I do the macaroni and the vegetables."
"That’s microwave," says her brother. The day before, he had cooked pork chops for lunch and for dinner served the leftovers in sauce over macaroni.
"Which I cooked," says Julia.
"They not only prepare my food," Fremante said later. "They cut it up and, at times, they actually feed me."

Fremante organizes things at home over the telephone, like an upcoming family birthday party for his kids or arranging for firewood for the winter.
"It took me three days to get it here so my son can cut it," he said of the wood.
Joe goes on to brag about his sister’s accomplishments, stating, "She’s too shy to say anything but she’s a straight-A honors student. I help her with her homework."
Asked if he worries about his father, Joe says, "Sometimes." Looking at his father, he goes on, "When I’m not here, I kind of forget you have MS." Most of his friends, he says, don’t really know about it.

The first nine years of his life, Joe says, his father could walk.
"Joey had this period, when he was 12 or 13, when he felt like life cheated him," said Fremante.
He recalled a father-son talk they had had. "I always feel guilty you do all these things. Why do you do it"" the father asked.
"Without you, I’d be lost," the son said.
"I love my Daddy," says Julia, patting him on the shoulder.
"She still has that little-kid connection," says her brother.

Relentless disease

Fremante’s own childhood was disease-free, but he has dealt with the steady progression of MS from his young adulthood on.

Fremante grew up in Kinderhook, the son of a State Police captain and a homemaker. He went to Ichabod Crane High School and liked math best. He’s always liked numbers and can work with them in his head.
"It’s come in handy; I can’t write anymore," said Fremante.
His first job was as a nurse’s aid. "I liked it a lot," he said of the work. "I volunteered for doubles at Christmas. I liked being with the geriatric patients because they needed me."

The pay was poor, though, so he became a union plumber with Local 7.

When Fremante was 20 — he’s now in his early forties — he felt a sensation in his leg that he knew was not right.
"I’m a heavy smoker, and they said it was bad circulation," he recalled.

By the time he was 24, he was unable to run long distances.
In 1990, at the age of 26, Fremante was on vacation in Maine when he and a friend were swimming in the cold water. It was October but, Fremante said, "I’m a tough guy."

He ended up with hypothermia and was then diagnosed with MS.
He recalls walking out of the doctor’s office. "I got in the car with my two-week-old son in back, my first born, and his mother. I didn’t want to tell them. I was trying to hold it in, to hold in the tears," he said.

Fremante said he wanted to know how to deal with the disease himself before he told his girlfriend; it took him six months to tell her. Two years after the MS diagnosis, their daughter, Julia, was born.

Fremante was able to walk until 1999, when he started using crutches. He began using a scooter in 2001.

In 2003, he had a pump put in his spinal cord to help relax his muscles.
"I couldn’t get in the car after that," he said. "My ability to walk diminished. Now my legs don’t do anything."
Fremante goes on, in a matter-of-fact tone, "Two years ago, the hands and arms started giving out."
Asked how he copes with such relentlessly progressing limitations, Fremante answers, "You let go of a lot of things. I was a pretty stress-free guy. What are you going to do""
Asked if he had any hope of medical advances helping him, Fremante replied, "Not for people like me...The only hope is embryonic cell research."
Later, he said of injecting embryonic cells into the spinal cord, "I just sit here and wait for that day to come."

Fremante works within realistic parameters for attainable goals.
He’s just gotten a new chair that, he says, has "all the bells and whistles." He explains that it reclines in a space-shuttle position and has a lift. He’ll be able to sleep in it more comfortably.

But he needs to come up with $18,000 to get the bathroom and the ramp into the house re-done to accommodate the new chair.
He has Medicaid, Medicare, and Blue Shield coverage, Fremante said. "But they can only do so much...My life can get very aggravating. I never really had a temper."
He applies for funds by typing with one finger. "It takes a long time," said Fremante.

Fathoming the future

Fremante is bothered that he now can’t get to most of the events his kids are involved in.
"I’ve never stopped my kids from doing anything.," he said. "They know I would sit here rotting to let them go.
"Up until two years ago, I never missed a game or an event...but now it’s too much trouble for people to get me into a car."

Their mother does the driving now.
"I don’t care," says Julia, explaining to her momentarily startled father. "I know that you want to come, which is what’s important."
She goes on, reporting, "He still comes to my tennis games at home."
And he still coaches her to focus on winning. "She does it for fun," Fremante says of his daughter playing sports. "I try to get a little more aggression out of her."

Julia responds that her junior-varsity tennis team is undefeated.
Joe has some ideas he calls "far-fetched" for his future. One of them, he reveals after some prodding, is to be a doctor. He thinks that’s out of the question because he has an 86 average.
Nodding to his father, Joe says, "He wants a 90 or above."
With a steady gaze, his father responds, "I watch the amount of studying you do and, if you can get an 86 with the corners you cut, that’s not good. If you were studying hard and got an 86, that would be good."

Joe’s other idea is to own a restaurant.
"He’s a good cook; that’s what he should do," says Julia.

Julia also says her brother likes to work with kids.

He has attended Camp Nassau in Guilderland since he was a kid himself and, for the last two years, he has helped out with the younger children.
Julia thinks a "cool job" for her would be to plan the outings for the Blessed Sacrament youth group, which she attends.
"Daddy doesn’t believe in God," says Julia.
"Our mom does," says Joe.

When Joe and Julia are with their mother, a school teacher who lives in Albany, they attend Blessed Sacrament Church. The couple split up nine years ago.

Little things

Julia recalls a time when the family was taking its annual vacation on the coast of Maine and her father lost his crutch in the ocean; he’s not one to give up.

Three hours later, the ocean returned the crutch.

Sometimes it’s the little things that matter.
"I can still light a lighter," says Fremante, a heavy smoker.

On Saturday, he left his kids in their cozy family room and wheeled himself to the door. He manipulated the lever handle, opened the door, and descended a ramp to the garage to smoke.

One time, when his kids were three and five years old, he smelled cigarette smoke on their hair.
"I never smoked in the house again," said Fremante.