A little light on a bleak horizon
Christopher Middleton finds joy amid the grief at a children’s hospice
In a small, bright room at the end of a long corridor, Lizzie Pickering looks at the little bed where the body of her six-year-old son Harry was laid out in November 2000. “We stayed with him here the whole week, up until the funeral,” she recalls. “We went home at one point, but couldn’t cope. The birthday present Harry had got me was still sitting on the kitchen table; we lasted one hour before we came back here. Everyone understood. I think they were expecting it.
“Our other children came into this room quite regularly. I think a lot of children’s fear of death comes from things like Scooby-Doo cartoons, with ghosts rattling chains and scary noises. But when our two children saw their brother lying there at peace, they weren’t afraid, they understood.
“I remember Harry’s best friend Claudia had just had a tooth out. She gave us the tooth to put into Harry’s coffin, with a note saying she hoped he’d get a visit from the tooth fairy.
“The great thing was, everything was left up to us. We were able to bring all Harry’s things into the room and just sit there with him. No one else even entered the room unless we asked them to. Looking back, it was just the most perfect care we received here.”
“Here” is Helen House, the Oxford children’s hospice that was featured in a recent BBC documentary series, and which this year celebrates its 25th anniversary.
During that quarter of a century, more than 1,000 children have passed through the house’s big red door and their photos line the walls. Everyone who stays suffers from what is termed a life-shortening condition, but while many of them do spend their last days here, the vast majority come to Helen House simply for a break. And that applies as much to the parents as to the children.
“Knowing we’re coming is like a little bit of light on the horizon,” says Gail Walshe, cradling her threeand-a-half-year-old son Luke in her arms. “We’ve been looking forward to it for a month.”
For it’s not just the children who come to stay but the whole family.
“Oh yes, we have whole squads of brothers and sisters, not to mention guinea pigs and Labradors,” smiles Sister Frances Dominica, the founder of Helen House. “After all, it can be very hard being the well brother or sister in this sort of situation. They need love, care and time as well.”
In Lizzie Pickering’s case, she says her family practically grew up at Helen House.
“Every year, we’d all come here for our summer holiday,” she recalls. “I think the staff taught our two healthy children to take their first upright steps here. And they took us on the kind of outings we’d never have had the confidence to try on our own: to Legoland, to a karting track, even up in a plane.
Their visits to Helen House spanned half a decade, but some families have been coming for even longer. “We first brought our daughter Helen here when she was 15 months old, and she’s 10 now,” says Sandra Roberts. “For me, the wonderful thing is that the minute you walk through the door, everything stops. They give you a cup of tea and you hand over the responsibility. The feeds, the medication, the fighting with the health and education authorities, it all stops. For a few days, at least.”
It’s the heaviness of this parental burden that Sister Frances hopes the television series will have conveyed to the public.
“We were very wary about getting involved, but having spoken to our families, we found that what they wanted to get across, more than anything, was the unrelenting nature of the care that’s required when you’re looking after a desperately ill child. These parents love their children beyond words, but they do want people to know about the endless sleep deprivation, the total inability to take part in any sort of spontaneous family activity.”
The television series has, of course, brought the work of Helen House to a wider audience, but the main task is, as ever, raising money rather than profile. All families stay for free. It takes £4 million a year to run both Helen House and its sister hospice, Douglas House, which sits just across the garden (and provides the same sort of service for young adults aged 16-40).
Each spring, some of the country’s top comedians put on a benefit show, called Childish Things, and this summer’s 25th anniversary ball, at Henley, is being hosted by Jeremy Clarkson and his wife Francie.
There is, says Sister Frances, no contradiction between parties and laughter and the work done at Helen and Douglas House.
“There’s a perception that hospices are just places where people go to die, but that’s only part of our work,” she says. “A better word for us might be ‘respice’, a place where people come to rest and relax. The truth is, what we do here is as much about love and joy as it is about sorrow and grief.”
Helen and Douglas House, 14a Magdalen Road, Oxford (01865 794749; www.helenandddouglas.org.uk).
House call: Max and Gail Walshe with their son Luke. ‘We’ve been looking forward to coming for a month,’ says Gail. Left: Sister Frances Dominica, founder of Helen House: ‘Everyone is welcome, including pets’