Everyone's life has a story. In "Lives," we tell some of those stories about North Shore people who have died recently. "Lives" runs Mondays in The Salem News.
PEABODY — Sacrifice is part of parenthood. Most people understand before the kids arrive that they'll spend the rest of their lives giving of themselves.
Barbara and Robert Wentworth thought they were well aware of that future by the time their third child, Alex, was born on April 15, 1961. Little did they know just how much they, and their other children, would have to give.
Alex's favorite song was "The Gambler" by Kenny Rogers, and it was appropriate not just because he was a poker player, but because his life was one long, high-stakes gamble, and he won the pot for 30 years.
He died Sunday, May 30, at the age of 49, after a lifelong fight that doctors had predicted he'd lose by the time he was 19.
The thing about Alex was he was always just ahead of the research curve — not so far that he had no future, but far enough that tomorrow was always uncertain, and limited.
He was born with Alport's syndrome, a rare genetic disorder that Barbara had no idea she carried. The genetic basics of the disease, which affects the kidneys and the ears, have only been understood for about 20 years, and there is no cure.
"It was a shock," Barbara said.
As a youngster he became unruly and difficult to handle. Today, he'd probably be diagnosed as hyperactive, with attention deficit disorder. His parents began taking him to the Joseph Kennedy School for the Disabled in Brighton when he was 6, later sending him on a state-funded school bus, back and forth every day.
For all his problems — his surgeries alone ended up numbering in the hundreds — Alex always lived at home. His folks were adamant about that.
At the school, he was diagnosed as hard of hearing, one of the symptoms of Alport's syndrome. He was fitted with bilateral hearing aids, which he used to great advantage all his life.
After a few years at the Brighton school Alex was transferred to Center School in Peabody through the sixth grade, then began attending the Landmark School in Beverly.
"It turned out to be a blessing in disguise," Barbara said, because Alex's kidneys began failing, and in those days Landmark was better equipped to deal with his needs than a public school.
Sacrifice and joy
Dialysis quickly became a fixture of Alex's life, whenever he didn't have a functioning kidney. He got his first transplant in 1976, a second in 1979, a third in 1983 and a final, fourth one in 2000.
"That was a good kidney," younger sister Tracey Foster said, and Alex had some of the best years of his life before it, too, failed three years ago.
Older sister Linda Monte said Alex was actually a guinea pig in the world of kidney transplants.
"There were not that many when he got his first," she said. The drugs he was given afterward were more toxic than they are today, resulting in Alex becoming legally blind, and his body bloated following massive doses of steroids.
None of this scratches the surface of Alex's difficulties, nor does it reflect the joys in his life.
He loved the Red Sox and other New England teams and games of poker and winter trips to Florida with his second family, the neighboring Wolfroms. It also doesn't tell you that he could, and would, talk your ear off.
Barbara and Robert acknowledge without flinching that time spent with Alex was time stolen from their other kids.
"They got shorted," Barbara said. Linda and Tracey speak briefly and just a bit ruefully about being forced to grow up faster than they might have wanted, and in Tracey's case, "coming home to an empty house most of my life."
But with perhaps the wisdom gained peering through the other end of the microscope as adults, there's no animosity whatsoever in their words.
'Just what is'
Sitting around the living room, Alex's extended family decides to play the CD the funeral home put together for his memorial service.
They bring in a laptop computer and start the video, but Barbara and Robert don't watch. They move to the far side of the room, she staring out the window, he concentrating on his crossed fingers cradled between his knees.
They are simple people insofar as they confront life matter-of-factly. Alex was their hand, and as the Kenny Rogers song goes, "Every gambler knows that the secret to surviving is knowing what to throw away and knowing what to keep."
Barbara and Robert seem to understand innately the darkness that might have consumed them had they dwelled too long on the unanswerable.
One of their favorite sayings is "There is no right, there is no wrong, there's just what is."
Asked if they ever mourned the fact their son's life was so difficult, they both quickly say no.
"If you go down that road, it's very dangerous," Robert said. "I stayed away from it."
It was one of the few roads the couple avoided. Alex's first transplant — the one in 1976? That came from Barbara. The second one three years later? That was one of Robert's.
After the last kidney failed, Alex was moved to a bedroom on the first floor of the couple's two-story home on Reed Road in Peabody. For the last three years, Robert slept right next door, in the dining room, with a baby monitor by his bedside carrying any sounds Alex might make in the night.
The stress was sometimes too much, but Barbara said her son seemed to understand.
"He always forgave us when we were short with him," she said. "And we weren't angels."
• • •
Staff writer Steve Landwehr can be reached at 978-338-2660 or by e-mail at slandwehr@salemnews.com.
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