Updated: May 1, 2019: Paul Scharoun-DeForge passed away in April 2019 at the age of 56. He shared 25 years of wedded bliss with his beloved wife, Kris.
For years, Kris Scharoun-DeForge had a Valentine’s Day routine she celebrated like clockwork with her husband, Paul Scharoun-DeForge.
She would always have a card—one of the elaborate ones she prefers to make by hand for those she loves—waiting for him when he came home from work.
Kris, 58, enjoys cooking. Paul loves just about everything she makes. Yet on Valentine’s Day, they would go out to eat, maybe at Red Lobster or Olive Garden, maybe someplace as basic and comfortable as their beloved Subway. They were celebrating each other.
“He opened up my world,” Kris said, her arm resting on Paul’s.
But this year’s Valentine’s Day may be the most eventful one yet. That’s because it is their 25th as husband and wife, a landmark that would be noteworthy for most couples but is extraordinary for the Scharoun-DeForges. They were both born with Down syndrome and are believed to be the longest-married couple with the condition in the country.
At the time of their wedding, some folks believed that people with Down syndrome didn’t have the emotional maturity to be married. Kris, who as a girl used to cut wedding photos from magazines and hang them on her wall, knew better. “I looked into his eyes and saw my future,” Kris said about falling in love with Paul when they first met at a dance 30 years ago. To prove her point, when they got married, they decided to blend their last names into one.
Still, they’ve had their struggles, and the most recent one may be the most monumental. This year’s Valentine’s Day is the first on which they won’t be living together. Paul, 54, is coping with early-stage dementia, an illness that affects many with his condition at a relatively young age. Several months ago, the state moved him into a community residence with intensive nursing care. “When they told me, I started to cry,” said Kris, who still lives in their cozy apartment in Liverpool, New York, a suburb of Syracuse. “He’s my life. I don’t want to be without him.”
Their family worked hard to keep them together. They believe that Kris and Paul deserve the chance to make the same decisions as any couple when one partner faces dementia.
“They should define their own lives,” Susan Scharoun, Kris’s sister, told Today. “They know what is good for them.”
When the New York State Office for People with Developmental Disabilities determined that Paul could not stay in the couple’s home, the family petitioned. They even found a new apartment that met the state’s standards and was more easily accessible for Paul. At first, the state agreed—a huge victory—but Paul’s condition continued to deteriorate. By that time he was using a wheelchair and required round-the-clock care. The state decided he needed to move to the facility after all.
The couple was disappointed but not daunted. Kris visits Paul regularly, and they spend weekends together at Scharoun’s house, where Kris still cooks for her groom. “They have an unconditional love,” Scharoun said. “They totally complement each other.” Don’t miss these stories of first loves that will touch your heart.
The ongoing quest to keep them together reminds Lorraine DeForge, Paul’s mother, of all the obstacles her son has overcome. With help from his seven brothers and sisters, he mastered the bus service in Syracuse. He spent many years working at the Arc of Onondaga’s vocational division. In 2013, this local chapter of the Arc, a nationwide community organization that advocates for the developmentally disabled, cited Paul’s work ethic, community service, and good cheer when it named him Person of the Year.
DeForge remembered how some doctors told her “not to expect much” when Paul was born. Instead, he grew up to live a successful life that included a marriage that has lasted a quarter century.
Kris has had her struggles too. While she speaks with passion of the support of her parents, she spent a year as a child in a state institution after her father died young and her mother became ill. “It was hard,” she said quietly, recalling the sense of isolation.
Then and now, she said, some people could be cruel. She still encounters the occasional stranger who makes casual and wounding use of the word retard.
The truth is, those people have no idea how rich and rewarding her life is.
The Noun Project
They cannot appreciate how Kris, a diabetic, has the courage to give herself insulin injections four times every day.
They cannot understand how Kris learned to be a skilled cook and graduated from high school, or how she gets up in the morning to go to work in an office mail room, or how she and Paul maintain a fierce allegiance to NASCAR driver Dale Earnhardt Jr.
They cannot see the kind of commitment that endures after 25 years, and is every bit as fresh today: “to have and to hold, in sickness and in health.”
And they can’t see how, as Kris sits in her own living room and recalls those vows from her wedding day, she is surrounded by photos of herself with the man who changed her life. Next, read up on these beautiful anniversary traditions from happy couples.