Cou­ple re­newed vows last August in hos­pi­tal chapel

The Buffalo News - - CITY & REGION -

“What they did,” Lor­raine said, “cleared the path for other cou­ples.”

A year ago, I did a piece in The Buf­falo News that doc­u­mented their long­time com­mit­ment. The story was taken to an in­ter­na­tional au­di­ence by such out­lets as Read­ers Di­gest and To­day, un­der­lin­ing just how much this quiet cou­ple had achieved.

As hap­pens to many adults with Down syn­drome, Paul be­gan show­ing signs of early-stage de­men­tia. For as long as pos­si­ble, Kris ScharounDeForge – sup­ported by her friends and fam­ily – asked the state to al­low the cou­ple to stay to­gether in the apart­ment in sub­ur­ban Syra­cuse where they lived, with staff sup­port.

Fi­nally, Paul’s med­i­cal prob­lems made that im­pos­si­ble, and he moved into a com­mu­nity res­i­dence that pro­vided in­ten­sive nurs­ing care. Su­san Scharoun, Kris’ sis­ter, said he still spent time with Kris, ei­ther at his new home or more of­ten at their apart­ment.

Even in their fi­nal months to­gether, the cou­ple had some mem­o­rable moments. Last sum­mer, Kris was re­cov­er­ing from pneu­mo­nia when Paul stopped to see her on their Aug. 13 an­niver­sary at Up­state Univer­sity Hos­pi­tal in Syra­cuse. They were both in wheel­chairs when they re­newed their mar­riage vows in the hos­pi­tal chapel.

“Watch­ing it, it was like Paul woke up,” Scharoun said. “He smiled and reached out and took her hand.”

Six months later, on Valen­tine’s Day, Kris, 59, had re­cov­ered from her ill­ness and was able to spend the day with Paul. They re­ceived a sur­prise visit from the Har­mony Katz, a bar­ber­shop quar­tet that had learned of their ex­tra­or­di­nary ro­mance.

As they lis­tened to such fa­vorites as “Let Me Call You Sweet­heart,” Kris put her arms around her hus­band.

“She al­ways said to us that when she saw Paul, she saw her fu­ture,” Scharoun said.

As for Paul, his life bridged an era of great change for those born with de­vel­op­men­tal dis­abil­i­ties. The in­fant who doc­tors wanted to put in an institution grew into a high school grad­u­ate who mastered the Syra­cuse bus sys­tem, held sev­eral jobs and be­came a fa­mil­iar civic fig­ure, a guy whose work ethic and self­less na­ture won him hon­ors as “Per­son of the Year” in 2013 by ARC of Onondaga.

Kris Scharoun-DeForge has al­ways en­joyed mak­ing cards and art­work, and Su­san Scharoun said Kris is work­ing on a pic­ture board for Satur­day’s 11 a.m. memo­rial ser­vice at Im­mac­u­late Heart of Mary Church, in Liver­pool.

Shortly be­fore his death, she drew a pic­ture of a but­ter­fly that hung on the wall by Paul’s bed, with a note telling him he was “the man of my dreams.” Kris learned last Thurs­day from her sib­lings of her hus­band’s death, and Scharoun said Kris de­scribed her grief in this way:

“I cry a lit­tle to let it out, and then I stop.”

Lor­raine DeForge re­mains grate­ful for Kris, and for all the sup­port that buoyed her son since he was born. Paul’s com­fort in the larger com­mu­nity was re­in­forced early by his bond with his brothers and sis­ters. It was no sur­prise to Lor­raine that her son Jerry was with Paul at the mo­ment he died.

“We treated him like he was the world,” Jerry said of Paul’s re­la­tion­ship with his seven DeForge sib­lings. “It wasn’t like he was Down syn­drome or any­thing else.”

They were 14 months apart, close since they both tod­dled, brothers who learned side-by-side to ride twowheel­ers and shared bunk beds for years in the same child­hood room.

“He was my buddy be­fore he was my brother,” Jerry said. “What­ever I did, he did, and what­ever he did, I did.”

That pact held tight un­til the end, when Jerry sensed what was about to hap­pen. He asked the nurses in the room if it would be all right, then he climbed into bed and held his brother.

Derek Gee/Buf­falo News

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