A woman with Down’s Syndrome has spoken out about the incredible bond she shared with her husband, who had the same condition, before he passed away in April.
Kris and Paul Scharoun-DeForge became one of the first couples with Down’s syndrome to get married after meeting at a ball for disabled people in 1988.
After a very happy marriage of more than 25 years, Paul aged 56 earlier this year after developing early-onset Alzheimer’s.
The pair complained of being ‘treated like children’ by people who found it hard to accept that two people with their condition could get married.
Recalling her time with the love of her life, Kris, 59, told , ‘He got me laughing and everything. He was the one for me’.
Speaking during a ceremony to lay her beloved to rest on a lake where he always used to love fishing, she said: ‘I proposed to him. I whispered in his ear, “Would you marry me?”.
And he looked up at me with this big beautiful smile and he shook his head “Yes!” ‘And that’s when I knew. He got me laughing, he was the one for me.’
Her sister Susan Scharoun described the struggle for them to get married back as it took them five years before they got to the actual ‘I do’.
She told the two were treated ‘like children’ as they had to undergo marriage classes, counselling sessions and scrutinising by supposedly able-minded people.
Susan said: ‘Yea, there really was quite a bit of resistance. There was a feeling that it was like children getting married versus two very capable adults.’
Kris scattered part of her husband’s ashes by the lake, and expressed her desire to be laid alongside him when the time comes.
Despite more than 25 years since the two married in 1993, couples with Down’s Syndrome still fall short of having their love validated.
Kris said: ‘People like us need to have a chance. A chance to find the man of your dreams, like I did.’
Her sister Susan echoed her as she said people will start ‘recognising the importance of this kind of intimate love’.
When asked if she could ever learn again, Kris replied: ‘I just lost the man that I love, but I’m going to try.’
Even if she doesn’t succeed, Kris said it’s still far better to have loved and lost, than to be told you can never love at all.
Kris and Paul Scharoun-DeForge are thought to have had the longest marriage between two people with Down’s syndrome.
It took five years for them to win the right to wed from New York state officials.
Last year on August 13, they celebrated their 25th wedding anniversary by renewing their vows, after Kris was hospitalized with pneumonia.
A relative at his funeral in Liverpool on April 6 expressed how lucky Paul believed he was.
‘To an outsider, it may not seem that way — but to those of us who knew and loved him, it’s absolutely true,’ he said.
‘They are role models for everybody who wants a good relationship,’ Kris’s elder sister Susan Scharoun told. ‘They were a team: They deferred to each other and looked out for each other.’
Susan, a psychology professor at Le Moyne College in Syracuse, recalled earlier this year that at Kris’s hen party a friend asked her what she loved about Paul.
Kris replied that she really loved that he had Down syndrome. ‘For us, that was a complete acceptance of self,’ said Susan.
The couple lived together in an apartment in a state-supported sheltered housing project for people with disabilities.
They both had jobs, Paul was at the Arc of Onondaga, an organisation for people with disabilities, and Kris at Pizza Hut before moving to the New York State Office for People with Developmental Disabilities.
The often celebrated their wedding anniversary with holidays in the Adirondack Mountains.
Last year Paul began showing the symptoms of Alzheimer’s disease, and eventually had to go into care, which left Kris distraught. But still they were able to share Sunday dinners at Susan’s home.
‘Little by little, you do get used to having them less there,’ Susan said.
‘He was still a part of the family, but you could tell he didn’t really recognize people.’
But Paul had no trouble remembering his sweetheart.
‘When he would see Kris, he would just look at her, and you knew there was that recognition,’ Susan told.