Paul and Kris Scharoun-DeForge are pictured at their wedding in August 1993. Photo / Supplied by Scharoun family
Some people who saw Paul and Kris Scharoun-DeForge from a distance felt pity for them. Others discouraged them from getting married. But the couple, both of whom were born with Down Syndrome, believed they were the luckiest people in the world.
In fact, their family believes they might have had one of the longest marriages of any couple with Down Syndrome. And one of the happiest marriages of anyone - with Down Syndrome or without.
Paul Scharoun-DeForge died last month after 25 years of marriage to his sweetheart. When a family member read his eulogy, it began with his deep gratitude for his life and his belief that luck shined on him wherever he went.
"To an outsider, it may not seem that way - but to those of us who knew and loved him, it's absolutely true," stated the eulogy, read April 6 at his packed funeral in Liverpool, New York, near Syracuse. He was 56.
The story of Paul and his wife, Kris, 59 - which has been chronicled by various media outlets over the years - is a tale that reaches far beyond people with disabilities.
"They are role models for everybody who wants a good relationship," said Susan Scharoun, Kris Scharoun-DeForge's older sister. "They were a team: They deferred to each other and looked out for each other."
Kris loved to cook, and her husband loved to eat her cooking, Scharoun said. He also kept a copy of the insulin scale for his wife, who is diabetic. When she took her blood-sugar levels, he always checked in, offering encouragement or suggestions. He often said, "Darling, calm down," when she was upset, and he said it gently and without an authoritative tone. The soothing worked.
Paul died of complications from early-onset Alzheimer's disease, which more than half of people with Down Syndrome have in their 50s or 60s, according to the National Institute on Aging.
He and his wife both came from families of eight kids. When they were born, family doctors told each of their parents that because of the Down Syndrome, they would not have full lives, Scharoun said. The doctors recommended they be put in an institution, she said.
Each of their parents had a deep faith in their children and ignored the advice, which turned out to be a smart and critical decision, for they both grew up to live extraordinary and productive lives.
They both worked at jobs - he at the Arc of Onondaga's workshop, an organization for people with disabilities, and she at Pizza Hut and then the New York State Office for People with Developmental Disabilities. The Scharoun-DeForges were popular and well-liked and were proud to be godparents to their niece.
The couple, who met at a dance for people with disabilities in the 1980s, were immediately smitten and dated for years, marrying in 1993 after a five-year engagement but not before they faced legal hurdles.
Because of their intellectual disabilities, they had to prove to the state they knew what they were consenting to by getting married, according to Scharoun. To prove it, they had to take tests that measured sexual knowledge, feelings and needs. They attended classes sponsored by Planned Parenthood that helped them acquire the skills they needed to pass the test, Scharoun said.
Kris said in an interview with The Washington Post that, even before the tests, she knew exactly what she wanted. It was she, after all, who took the initiative and asked her man to marry her.
"He made me laugh," she said. "I looked into his eyes and saw my future, and that's when I proposed to him... He said yes."
At a wedding shower before their marriage, a friend asked the bride what it was that she really loved about her groom. She replied that she really loved that he had Down Syndrome, her sister recalled.
"For us, that was a complete acceptance of self," said Scharoun, 63, a psychology professor at Le Moyne College in Syracuse.
She remembered her sister saying: "I am perfectly fine - in fact, I like a man who is like me."
When they married, Paul and Kris took each other's names and became Kris and Paul Scharoun-DeForge.
"The combination of the two names was just perfect," Scharoun said. "Our family was just so delighted to have Paul join us, and his family was delighted to have Kris join them."
The Scharoun-DeForges lived together in a state-supported apartment community for people with disabilities, where they shared a master bedroom and where staff members would sleep in a second bedroom.
About a year ago, Paul showed advanced signs of dementia, and he had to move into a separate residence about 10 miles away for intensive nursing care.
"Little by little, you do get used to having them less there," Scharoun said. "He was still a part of the family, but you could tell he didn't really recognise people."
However, his wife would say that her husband never stopped recognising her, even if he simply showed signs of familiarity. Even with advanced Alzheimer's, playing music would perk him up - Christmas carols or country, she said.
"When he would see Kris, he would just look at her, and you knew there was that recognition," Scharoun said. Her spouse, Susan Hynds, wrote and delivered the eulogy.
Kris - who said she loved her husband's "big, beautiful blue eyes" - was devastated when he had to move out.
But she and her husband met for Sunday dinners at Scharoun's house in Onondaga Hill, a Syracuse suburb. Last summer, when Kris was recovering from pneumonia at a hospital, her husband surprised her on their 25th wedding anniversary with a visit.
And then something beautiful happened: Someone spontaneously called a church deacon, and the couple renewed vows while sitting in wheelchairs in the chapel in Upstate University Hospital in Syracuse.
In March, Paul returned to inpatient care with pneumonia, and his wife sat next to him and held his hand. Later, he put his head on a brother's shoulder and died peacefully.
"I was very, very upset," Kris said, who had recently drawn a picture of a butterfly that hung on the wall by her husband's bed.
"I gave it to my sweetheart, and he loved it," she said, adding he loved butterflies.
She even imagined him as a butterfly.
"I think of Paul flying up in the air... and being free," she said.
The couple often spent their anniversaries vacationing in the Adirondack Mountains.
On August 13, the date of their wedding anniversary, she plans to go to their special place to scatter her husband's ashes and to imagine him flying away.
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