Jeff Van Son passed away on June 15 from complications arising from Frontotemporal Dementia. Below is the story the Observer published Feb. 8 about the Van Son family's struggles to come to terms with Jeff's rare terminal illness, and the community that rallied around them to give them a happy final year with the husband and father while they slowly said goodbye —
Jeff Van Son doesn’t know how many Valentine’s Days are ahead of him. He doesn’t know if he’ll ever kiss his wife, Michele, on their anniversary again. He can’t count how many times he’ll be able to watch their three children blow out the candles on their birthday cakes.
There’s a box in the top of the closet in his bedroom at the family’s Winter Park home. In it there are 39 birthday cards, one for each year for twin boys Josh and Nick and their younger sister, Lillian, until they all turn 18. The cards are already filled out by their daddy, waiting for a day that he gets to say “I love you” again.
Jeff hasn’t said “I love you” in more than six months. Now he can’t speak at all, though he tells his wife he loves her in other ways, Michele said.
Michele misses her husband terribly. Even as she holds his hand. Even as he presses his head against hers in a sweet embrace while they walk down the street in an afternoon breeze. Part of him is still here, she tells her children. The other part is already in heaven. She loves all of him anyway, she said, even as she's watched the old Jeff slowly fade away. Jeff the handyman. Jeff the problem solver. Jeff the athlete. Jeff the superhero dad. Jeff the romantic.
In a few days it will be Valentine's Day again, a day that's both all too special and not special at all for the Van Sons. They were married on Feb. 23, so they celebrate both days at the same time, somewhere in between.
“We always had our plans or our dreams that we wanted to fulfill,” Michele said. “That always superceded any single day.”
They've been celebrating that way for 10 years.
He had this wonderful way about him. I think he loved being a dad more than anything else. —Michele Van Son
The two Jeffs
But the last two years Michele has spent saying goodbye to her husband, piece by piece. She still loves the tall, gentle man she leans over and kisses in the living room of his new home in an assisted living facility — which she calls “Jeff’s house” — at the corner of Maitland’s Derbyshire Lane and Kewannee Trail. But she also knows he’s not all in the room with her. His eyes fix on a corner of the room while he’s led to the dining room by hand, his mind lost in a daze.
She talks of him in past and present tense. Today there’s Jeff, proud in his red University of Maryland polo shirt, who reflexively giggles as she tickles him, and who holds her in a quiet embrace as they stop to dance, just for a moment, on their way through the kitchen. But she’s already said goodbye to the Jeff who knew her name. The Jeff who loved to cook her dinner. The Jeff who could walk into the room and set everyone at ease.
The perfect family
There was never much struggle to the Van Sons’ marriage, Michele said. They were meant for each other. Sweethearts-turned-devoted parents, they loved being at home. Working as a consultant for business software developer SAP, Jeff worked from a home office frequently when he wasn’t across the country on business.
“When he was home, we had three meals a day together,” Michele said.
Ever the avid athlete and sports fan, he’d teach his children, twins Josh and Nick, now 6 years old, and daughter Lillian, now 5, wrestling moves.
Ask the twins what their dad was like and you won’t hear about the business deals he saved or the big promotion he received.
“He was a good wrestler,” said Josh, who has brown hair like his dad’s. Lilly says the same thing. Was daddy faking when he let his kids pin him? Nick giggles. “Maybe,” he said.
Wearing his faded blue Boston Red Sox hat, Jeff would play catch with them in the yard. He built their jungle gym. He would have been their little league coach, Michele said. He could have been the boys’ scoutmaster.
“He had this wonderful way about him,” she said. “I think he loved being a dad more than anything else.”
But he was also devoted to his marriage from the start, Michele said.
“Jeff and I have such a love story,” Michele said. “I got so lucky.”
It sounds like the adventure book from the start of the Disney-Pixar movie “Up”. They were their own adventure partners. They traveled for three weeks to go sailing in Thailand. They raced each other downhill on snowboards and on snowshoe hikes in Colorado.
They worked at their marriage, thriving on fixing issues before they got out of hand. Instead of waiting for a big blowout argument, they went to couples counseling early in their marriage, just in case. But in the last two years they’ve faced something few could expect, let alone hope to cope with.
I could want life to be better, but it is what it is.
—Jeff Van Son
The symptoms came slowly at first. Always a decisive problem solver with a keen memory, Jeff had no explanation for it when in the fall of 2009 he forgot his socks when packing for a business trip, or when he stopped winning his favorite card game, euchre, which he used to dominate. But after months of seemingly innocuous mental lapses culminated in him losing a recent promotion at his job at age 38, Michele knew something was wrong.
After seeing a series of doctors who dismissed his symptoms as psychological, the final diagnosis came on Dec. 2, 2009, what Michele calls their “day that will live in infamy.” Five days before the anniversary of the Pearl Harbor bombing, a bomb dropped on the Van Sons at Dr. Garrett Riggs’ office at the UCF College of Medicine.
“He spent three hours with us,” Michele said. “At the end of it he said this is not a 38-year-old brain.”
The diagnosis was frontotemporal dementia (FTD), a disease so rare it affects less than a tenth of a percent of the U.S. population. Jeff’s diagnosis was even more unlikely. Statistically the disease almost never strikes before age 45.
Nurses’ assistant Sonia Ahmati, who has cared for dozens of dementia patients in Europe and America, said Jeff, the vital athlete who ran the Boston Marathon, was the youngest patient she’s ever seen.
“So young as Jeff, never,” Ahmati said. “When I saw him here I thought he was a family member, not a patient.”
What FTD does defies doctors’ predictions for what it will take away and how long it will take to do it, Michele said, but the end result is the same. The frontal and temporal lobes of the brain, which control reasoning, personality, movement, speech, social graces, language and some aspects of memory, gradually disappear until the victim loses nearly all brain function. The result is invariably terminal.
“When I asked the doctor ‘what’s next?’ he did this,” Michele said, slowly shaking her head back and forth as her eyelash catches a tear before it rolls down her cheek. “That’s when the tears came.”
Jeff had anywhere between two and 20 years, Riggs told them, but he couldn’t predict how long Jeff would be able to talk, walk, eat or drink.
In his own words, in a video in 2010 from The Association for Frontotemporal Degeneration, Jeff said he’d learned to accept it.
“I could want life to be better, but it is what it is,” he said.
The best and worst year
After the ball dropped to start 2010, the Van Sons set about making a new year’s resolution to end all resolutions. They had no idea how long Jeff would be alive. So, sitting in a hotel room in Boston, they decided to plan everything as if there were no time left to lose.
“I wanted to do the work of dying so we could get on living,” Michele said.
Time was everything.
“I wasn't researching for a cure; I was looking at how do I maximize time with this man?” Michele said. “How do I realign Daddy's world?”
They arranged his finances so that after years of being the family’s accountant, he’d hand the reins to Michele before he forgot how. They wrote a will.
She asked him what his idea of heaven was like. Always devoted to his favorite baseball team, there was only one answer.
“He said, ‘being at a Red Sox game in Fenway Park with my family and friends and a beer and a hotdog,’” she said.
Knowing that Jeff may soon lose his ability to speak, they made videos for their children to watch when they’re older. On screen, Jeff would still be the smiling, doting father he always was, frozen in time.
“To them, he is still stronger, taller and faster than anyone on Earth,” Michele wrote in a continuing diary of Jeff’s condition. “…and I intend to help protect his identity as superhero as long as possible — forever, I hope.”
They started “daddy days at Disney”, taking one child at a time to have one-on-one time with their dad in the happiest place on Earth. They went to the mountains and the beach, making as many memories as they could while they still had time.
Jeff’s parents sold the home he’d grown up in, in Ithaca, New York, to move two doors down from their Golfside Drive home so he could move in there and they could take care of him, hosting “daddy slumber parties” alone with the kids. Jeff and Michelle’s parents hired a full-time babysitter, Ashley Midler, to provide stability and support around the house.
A community rallies
Quickly word spread about Jeff’s condition, radiating outward from Winter Park’s First United Methodist Church, where Michele works, and finding friends, coworkers and even strangers who wanted to make the family as happy as possible while Jeff could still share in it.
“Even in this dying process I've just been inundated by miracle after miracle after miracle,” Michele said.
Friends helped throw parties for Jeff and the kids on their birthdays, arriving by the dozens with food and presents.
When a friend and former co-worker learned about the family’s hope to attend a Red Sox game, they reached out to a business client who happened to be an executive with the team. Within a month, the family was in Jeff’s heaven, sitting a few rows behind home plate, the sun shining on their faces.
A few days before Christmas in 2010, there was a knock at the door. Another family friend had dropped dozens of Christmas presents at their door.
“It was everything on our list,” Michele said. “They gave us our whole Christmas.”
Knowing how much Jeff loved to cook and cook for others, Michelle and Jeff’s mom started organizing to rebuild the kitchen at “Jeff’s house”. More than $3,000 has poured in so far to help the renovation, Michele said. The project started Wednesday.
The kitchen where he smiled when he saw ice cream, where he danced with Michele, will be totally new.
The Association for Frontotemporal Degeneration assists people living with frontotemporal degeneration and supports research to improve treatment, care and prevention. Visit theaftd.org for more information.
In the months that followed into 2011, Jeff deteriorated rapidly. Riggs told Michele that he lost in six months what usually takes two years. Ahmati agreed.
“This is the fastest I’ve ever seen,” Ahmati said. “The human body is kind of strange. You never know.”
The last time Jeff said Michele’s name was in the summer of 2011, though she said part of him remembers the people he loves. The Jeff she can hold says it in different ways. Every time he presses his face against hers. Every time he smiles when he holds the teddy bear with recordings of his children telling him they love him.
The last time his children saw him, when dozens of family and friends gathered in costumes outside his new house for Halloween of 2011, they saw a man quietly smiling, proud, happy to be loved, Michele said. That’s the image of Jeff she wants them to remember — the one who still loves them, no matter where he is.
But they already know where that is, Nick said. “Heaven.”
It’s where the two Jeffs come back together again. It’s in the photo in Jeff’s room. They can see him there, sitting in the stands at Fenway Park in his faded blue hat, watching the game in the sunshine with his family and friends with an endless smile on his face. Jeff the superhero dad. Jeff the romantic. Jeff, who’s waiting to say “I love you.”