It was love adds Ron

“It was love,” adds Ron.And so they tuned into Richie, as they had with Robbie. Gradually, they developed separate routines, tailored to the boys’ individual likes and dislikes. They learned that Robbie could be quietened with Mahler, Wagner and Chopin, and that at certain times in the day he could lie listening to Snow White and the Seven Dwarfs and smile in all the right places Richie liked Queen and “Ave Maria”. They took both boys out for walks every day, and so dependent were the boys on routine that they walked out, even in storms “They loved being outside,” says Ron. “We brought them into the world and we had to make their lives worthwhile.”The boys went to special school and Richie was a regular at the local hospital. Otherwise, remarkably, the Turnbulls coped alone, without any special equipment or help from social services “We are private, independent people,” says Ron.

“We had seen other parents become overdependent on the state.”While they respected some of the medics they encountered, they resented experts who dismissed all the boys’ problems with the catch-all “you get that with cerebral palsy”, and those who tried to force their boys into alien routines, such as the physiotherapist who turned up just as they got Robbie to sleep and demanded that he be wakened because she had “a job to do”.Somewhere in the complicated emotional mix, there must have also have been fear – probably kindled by suggestions that institutional care was “best” – that outside involvement carried the risk that the boys might be taken from them. Melody becomes exasperated as she tries to explain their few early run-ins with authority. “If they suggest something you don’t think is right for your child, that’s OK as long as your child is ‘normal’.” If you insist on the best for a handicapped child, “you become the problem”.Distrust and fierce independence meant that for two decades, the Turnbulls never requested any outside help “We decided early on that we could never be ill,” says Ron “Richie hated strangers. He would shrink like a little mole.”It must have been exhausting. Every day the Turnbulls pushed Robbie and Richie out in their wheelchairs.

Then there was a gruelling routine of lifting, carrying, nappy changing, bathing, feeding and enemas. And in the night the couple rose every two hours to turn the boys to prevent bed sores But Melody bristles as the word “drudgery “My boys were not hard work,” she says. Other people were, and so was “the system”.It was not just Richie who shrank from the outside world. His parents also gradually retreated because “other people” shrank from their boys.

All those stares, nudges and comments.”I remember going into a chip shop and the man behind the counter asked, ‘Are they both yours?’,” says Melody. “Then he said, ‘You must have done something really awful in a previous life’.”A few people, Ron says, were “accepting” of the boys. But more often, parents gathered up their kids as the Turnbulls approached. Ron and Melody remember the customers at the Wimpy Bar who moved tables and complained it was “disgusting” their little boys were eating with “normal” people. As they reel off the slights, some of Melody’s old strength re-surfaces.She never let her anger show, she says “I cut myself off I just didn’t see people anymore. I think people came to see me as unapproachable.” Ron was more confrontational He would ask those who stared if they wanted a closer look.

Surely public ignorance decreased? No, he insists, the staring and craning of necks got worse as the boys got older and their deformities and disabilities obvious.But what finally beat them, they insist, was “the system”. They had had few dealings with social services till 1997, when a consultant warned them that the NHS might not pay for Richie’s latest operation to move his stomach into his chest and alleviate his agonising stomach pains.”What could we do?” asks Melody. “Richie was screaming in constant pain and he needed us to help him.” They sold their home to pay for the surgery. In the end, the NHS did foot the bill, but the Turnbulls’ slide towards disaster had started. Suitable permanent housing became a huge problem, and social services and other agencies became involved. “The merry-go-round started,” says Melody.The Turnbulls had moved once, from Lewisham to Bexhill, Sussex in 1996 so their boys could attend a better school.