Paul and Kris Sharoun-DeForge, who both have Down Syndrome, had a beautiful marriage for over 25 years, when Paul sadly died this spring, at the age of 56. This interview is from before his death.
For years, Kris Scharoun-DeForge had a very tight routine for Valentine’s Day, which she celebrated together with her husband, Paul Scharoun-DeForge. She always had a card (one she made herself for her loved one) and waited for him to come home from work.
Kris, now 58, loves to cook. Paul just enjoyed everything she made. But on Valentine’s Day, they would go out for dinner, sometimes to the Red Lobster or Olive Garden restaurant. Other times, they would just go to the cafe they loved. They simply celebrated each other.
“He opened my world,” said Kris, leaning on Paul’s arm.
Valentine’s Day was the most beautiful one ever this year. That was because it was their 25th time as husband and wife, a notable milestone for most couples and even more so for this couple. They were both born with Down Syndrome and so they are known as the longest married couple with this condition.
At the time of their marriage, it was believed that people with Down Syndrome did not have the emotional maturity to marry. As a young girl, Kris liked to cut wedding pictures out of magazines and put them on the wall. She knew better. “I looked him straight in the eye and saw my future,” Kris tells about the moment she fell in love with Paul when she first met him 30 years ago at a dance party. To make her point, they both chose to take the surnames of the other.
They, like any couple, have had their difficult times. However, this year was the first Valentine’s Day where they no longer lived together. Paul, suffers from the first phase of dementia, a disease that people with Down Syndrome often get early. A few months ago, the government decided that he should be cared for in a group home. “When they told me that, I started crying,” said Kris, who still lives in her cozy little apartment in the American village called Liverpool. “He’s my life and I don’t want to live without him at all.”
Their families did everything they could to keep them together. They believed that Kris and Paul deserved the chance to make their decisions together as a couple, even if one of them suffered from dementia.
“They should be able to choose their own lives,” said Susan Scharoun, Kris’ sister to Today Magazine. “They really know what’s good for them.”
When the New York State Agency for People with Development Problems determined that they could no longer live at home, the family appealed. They even found a new apartment that met the conditions of the state. At first they agreed, which was a great victory, but Paul’s situation continued to deteriorate. When he ended up in a wheelchair, help was needed day and night. At that moment, the state decided to transfer him to an institution.
The couple were disappointed, but accepted it. Kris visited Paul regularly and sometimes they spent the weekend together in the house of the Scharoun family, where Kris could cook for her husband. “They had an unconditional love,” said Mr. Scharoun and she continued, “they completely complemented each other.”
Kris said, “Paul is my life.” The lingering struggle to keep them together reminds Lorraine DeForge, Paul’s mother, of all the obstacles her son has had to overcome. With the help of seven brothers and sisters, he ended up on the bus service in the city. He worked at the Arc of Onondaga’s vocational division for many years. In 2013, this local division of the Arc, a national organization that stands up for people with limited development, appointed Paul as Person of the Year because of his work ethic and commitment to the community, and his good sense of humor.
Ms. DeForge remembers how doctors after birth said she “shouldn’t expect too much”. Yet he grew up and had a successful life, including his marriage that lasted a quarter of a century.
Kris also had her difficulties. Although she speaks passionately about her parents’ help, she spent a year in an institution as a child after her father died at an early age and her mother was ill. “It was difficult,” she gently said, recalling the situation and her loneliness.
The truth is, those people themselves have no idea how rich and valuable her life is. They can’t appreciate how Kris, as a diabetic, has the courage to give herself insulin injections four times a day. They don’t understand how Kris learned to cook so well and how she finished high school, or how she gets up in the morning to go to work at a post office. They don’t see the dedication that remains after 25 years of marriage, where the promises are as valid today as they were when they were made: “I must persevere, in sickness and in health.”
Nor can they know that Kris now sits in her own living room and remembers those promises of her wedding day, surrounded by pictures of herself with the man who changed her life.