Do you think marriage only happens when a couple is “perfect” in every way? If so, think again. This story is about the passing of a man who was married for 25 wonderful years, despite both partners having Down syndrome.
Paul Scharoun-DeForge, who bravely battled Alzheimer’s, passed away at 56. Their family believes this could be the longest marriage between two people with Down syndrome.
Many assume marriage is only for those who are healthy in every way. But Erin Sobokowski, a lawyer and Down syndrome advocate, says love is a universal feeling. No matter the circumstances, everyone wants to love and be loved—and that’s no different for people with Down syndrome.
Kris and Paul met at a dance for disabled individuals in the 1980s, in Liverpool, New York. Kris was the one who proposed to Paul in 1988.
She says Paul always made her laugh, and she just knew he was the one she wanted to spend her life with. When she asked him to marry her, Paul said yes.
After a five-year engagement, the couple tied the knot in 1993. Kris’s sister, Susan Scharoun, recalls how they both had the right to make their own decisions, and they made the most of them.
Like all couples, they had their differences. But they always supported each other.
Susan fondly remembers their love as unconditional. Kris, being more emotionally vulnerable, could always count on Paul to be her rock. Despite the challenges they faced, their love remained unshaken.
As Paul’s Alzheimer’s progressed, he began to struggle with dementia. But every time he saw Kris, there was still a spark of recognition on his face. When his condition worsened, Paul was moved to intensive care. In 2019, he developed pneumonia and was placed in inpatient care.
Kris stayed by his side the entire time, holding his hand and sitting next to him. Sadly, in late March, Paul passed away, resting his head on his brother’s shoulder.
This was the hardest part for Kris. Losing Paul, the love of her life, was a devastating change. Susan shared that they had to gently explain to Kris that Paul wasn’t coming back, which was very difficult for her to accept.
Kris says it was heartbreaking to lose him after spending most of her life by his side.
She gave Paul a butterfly before he passed, and he loved watching it hang beside his bed. Kris believes that now, like the butterfly, Paul is free.
She plans to scatter his ashes on their wedding anniversary, August 13th, to honor their love and the life they shared.
