Faith, love sustain a family

The Boston Herald

There are no feelings of doom and gloom in the sprawling ranch in Walpole where Debbie and Mark Bernabei live with their two sons, Nicky and Brett. No "Woe is me," or "Why us?" There is instead the sound of Brett's laughter, cartoons on TV, rays of sunlight pouring in from huge windows, photographs of the boys at different ages on the walls and on the bookshelves and flowers, or the feel of them, in every room.

"When everything is taken away from you, the only thing left is attitude," Debbie Bernabei says quoting Victor Frankl, a psychiatrist who was a prisoner in one of Hitler's death camps. Frankl maintained even in the camps that "the last of human freedoms" is the ability to "chose one's attitude in a given set of circumstances." And that life, under any condition, is worth living.

Nicky is 20. Brett is 16. Both are handsome boys who look younger than their years. Both are in wheelchairs. Both have little muscle control. But they have great eyes, Brett's blue, Nicky's hazel, which smile before their lips do.

No one knows how much they understand. They can't speak. But Brett laughs out loud at cartoons, and Nicky sits mesmerized in front of Channel 2 and loves classical music. Debbie says they never cry. Why would they? Both boys are well loved. They were born healthy after "perfect" pregnancies. Then at seven months Nicky started having seizures. "The doctors didn't have a name for it. They called it "seizure disorder and developmental delay of unknown etiology." And they said it would never happen again. "We waited four years to have another child," she says. "We had genetic counseling. We were scared. But everyone told us that what happened was a fluke." Brett didn't have seizures until he was 7 years old. But by then they knew what was not supposed to happen again, had happened.

"I thought then that since one bad thing had happened that would be it. But I'm 20 years down the road now and I know that's not true. I'm a nurse and I know how much worse it could be."

Mark and Debbie bought their ranch house in Walpole to be nearer to friends, family, schools and resources their boys would need. They put in ramps and knocked out walls and built bigger rooms and Debbie planted a garden of flowers so that in the spring and summer and fall, the world her sons could see from their windows would be beautiful.

She and Mark are Jehovah's Witnesses. They say they have been sustained by their faith, by their faith community and by all the people, family, friends and strangers, who have walked the bumpy road along with them. There have been fundraisers and donations from churches other than their own and even co-operation from insurance companies, "flowers from the CEO of Pilgrim Health himself," Debbie says. That's because she sent him a thank-you note and a picture of a padded bed insurance paid for. "There's nothing we need that we don't have except maybe a good night's sleep," she says laughing. "We take turns sleeping with Nicky because he has trouble breathing and we worry. But we're so lucky because we've been blessed with good health."

There is also the dream of a vacation. "That's really the hardest thing, not getting a break. We went away for a weekend and that was great. We read books and went out to dinner. We dream about going to Italy, but it's too far. So for our 25th anniversary, we're going to rent a video and have everyone over and pretend.

"I would like to have had a shot at doing it differently," she says. "But this is the life we have and we try to enjoy all the moments when things are stable. We don't get down because how can we when we have family and friends who bolster us?"

"You can't do something like this on your own," Mark says. "And we don't. We have a circle of people around us."