Last year was bittersweet for Kris Scharoun-DeForge and Paul DeForge. The two, who both have Down syndrome, celebrated 25 years of marriage by renewing their vows. But Paul, who had dementia, moved into an intensive care facility away from his wife. Less than a year after their silver anniversary, Paul died at 56 from complications of dementia. He'll be remembered for following his heart so that others with Down syndrome could do the same.
"I just wanted more people to see Kris and Paul as role models for what people with disabilities can be," Susan Scharoun, Kris' sister, told TODAY. "They were a complement as a couple. They had each other's backs. They just treated each other so well."
The two met three decades ago at a dance when Kris spotted Paul and the two immediately fell in love. She often said of the meeting, “I looked into Paul’s eyes and saw my future.”
When they celebrated their 25th wedding anniversary on August 13, 2018, they were believed to have had the longest marriage of any couple where both partners have Down syndrome. While some initially opposed their marriage, their union proved that people with intellectual disabilities can have fulfilling marriages.
“They have been a role model for unconditional positive regard in a relationship,” Scharoun said last year.
For most of their marriage, the DeForges loved the simple joys of life. Kris enjoyed cooking and they bowled and attended dances together in Syracuse, New York, where they lived. They often joined Scharoun and her family at their camp in the Adirondack Mountains. The family saw how much the two admired and respected each other.
“They have an unconditional love,” Scharoun said.
During the past few years they faced health challenges. Paul started showing signs of dementia, which occurs earlier in people with Down syndrome. As he declined, he had to move to an intensive care setting and Kris struggled with being alone for the first time since their marriage.
“We had to tell her he wasn’t going to come back and it became really difficult for her,” Scharoun said.
But Kris spent as much time as she could with Paul. The Buffalo News reported that on Valentine’s Day, she visited him and a local barbershop quartet, Harmony Katz, serenaded them. They also celebrated Paul's 56th birthday and the couple spent most Sundays at Scharoun's house.
"We had some very good moments in the last year," Scharoun said.
Even as Paul’s memory faded, he would light up when he saw his wife. During the last month of his life he was in and out of the hospital, first with a urinary tract infection then with pneumonia, which led to his death.
“Her presence was very calming to him," Scharoun said.
The families held a memorial mass for Paul on April 6. Scharoun said her sister and brother-in-law showed that people with Down syndrome can achieve their dreams.
“They should define their own lives. We should ask them more questions about what they want,” she said last year. “They know what is good for them.”
While the loss has been difficult, Kris has returned to work and is gradually resuming her hobbies.
"Kris is surrounded by love ... I am so unbelievably grateful," Scharoun said. "It will be a long time before she is completely healed but she is slowly getting there."