A lit­tle light on a bleak hori­zon

Christo­pher Mid­dle­ton finds joy amid the grief at a chil­dren’s hospice

The Daily Telegraph - Saturday - - Family -

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’

Newspapers in English

Newspapers from UK

© PressReader. All rights reserved.