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Updated: 6/27/2008 - 2:02 PM



Three years after ambulance crash, grandparents struggle with dual roles
Appealing to 'Extreme Makeover: Home Edition' to ensure care for disabled grandson
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News-Review photo by Barbaraellen Koch June and John Behr talk about getting their house remodled as they stand in their grandson Jared's tiny bedroom.
John Behr gazed into his kitchen as his blind and disabled grandson, Jared, 4, played nearby in the living room of a house that seems to get smaller all the time.

Pointing to two plaques, Mr. Behr explained that one was his and the other belonged to his daughter, Heidi, a Riverhead volunteer EMT killed in an ambulance crash three years ago this Saturday, when her son, Jared, was just 1.

"She got corpsman of the year," Mr. Behr said, recalling the night Heidi brought home the award. "And I got firefighter of the year one year, so what's better than that?"

As Mr. Behr struggled to choke back tears, Jared, forever giggling, tumbled into his grandfather's legs.

"Ahhhhh!" Mr. Behr said, scooping the child onto his lap. "You can't walk buddy, but you can tumblesault across the floor."

And so it's been for Mr. Behr and his wife, June, since their daughter died in the crash along Main Road in Aquebogue. They can grieve, but not for too long, because they have Jared to care for now. And Heidi is never too far away.

"Jared keeps us busy. He's the glue that holds us together," Ms. Behr said. "Everybody says, 'How could you deal with all this?' And we're like, well -- we have him."

"We see Heidi every day in him," Mr. Behr said.

But they fear that as they get older and Jared gets bigger, they'll have trouble caring for him in their 800-square-foot Riverhead home, at least in its current configuration.

Last week, they sent a video application to ABC's "Extreme Makeover: Home Edition," a reality show that remodels and rebuilds homes for families facing hardships. They were nominated for the show by Jared's teacher at Alternatives for Children in East Setauket.

"They're really just an extraordinary family," said the teacher, Melissa Krause, who had answered an ad in a newspaper seeking Long Island nominees. "They just do anything and everything for Jared. He's a great little boy and the family needs our help."

Jared suffers from epilepsy, cerebral palsy and brain damage. His eyesight is extremely limited and he can't walk, though he loves to stand, smile and bounce up and down. And he loves school, his grandparents said.

Jared's seizures were just beginning to worsen when Heidi, 23, a single mother, was killed along with paramedic William Stone of Rocky Point as the two tended to a heart patient they were transporting to Peconic Bay Medical Center.

Since then, Mr. and Ms. Behr legally adopted their grandchild, a status that helps them navigate the dizzying world of medical insurance and educational services.

"People say, 'You guys are saints,'ââ" Ms. Behr said. "But what choice did we have?"

"We're not saints," said Mr. Behr. "This is the hand that was dealt us, and you gotta keep going."

Save for a lack of free time -- and lack of sleep due to Jared's nightly seizures -- the Behrs said their situation has been manageable since Heidi's death.

"We're OK now, but he's starting to require more equipment and we just do not have the room," Ms. Behr said. "He's outgrowing his high chair. He's going to have to get a feeding chair. We have just enough room to walk around our dining room table now. He's still in his crib but we had to order a full-size handicapped bed with sides on it, and his room is very small.

"We've been trying to flip this house, but the way the economy is there's no way we could sell this and get something bigger," she said.

Mr. Behr, 52, who works at Riverhead Building Supply, and Ms. Behr, 49, a part-time waitress, said they envision an open floor plan for their home, with a handicapped-accessible bathroom.

"It doesn't have to be a mansion," Mr. Behr said. "It just has to be feasible. Chances are we'll need lifts to help get him out of the tub. It's a nice house, but it's tiny."

In their video application to ABC, the Behrs interviewed other volunteers at the ambulance corps and spoke at length about Heidi's volunteerism and giving nature. They also made sure to get Jared some face time.

"He catches everybody's eye for some reason," Mr. Behr said. "I don't know what it is. Girls walk by and go, 'Oh, look at his eyelashes.' That's the first thing everybody says."

Although the Behrs are hoping Jared also catches the attention of the producers at ABC, their greatest wish is that their grandson will someday walk and learn how to communicate.

"That's the drive," Mr. Behr said. "I don't want to use the word salvation, but that's what keeps us going."

"God must have known he was going to take Heidi early and that we wouldn't be able to handle it," Ms. Behr said. "So he gave us Jared."

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Results from last week:
"What would you like to see on the south side of East Main Street in downtown Riverhead?"

22 % A town square with a park, fountain and small shops, though taxpayers would have to foot most all of the bill for condemnation, demolition and construction.
25 % A mixed-use workforce housing and retail complex with some green space on the river, with developers paying for much of the project, but the town having to condemn the vacant buildings there.
35 % Indoor markets and other shops in the existing building stock, which won't cost taxpayers a thing, but may not be as pretty as redevelopment.
17 % I'm rooting for redevelopment, but the town should not be involved at all.
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