Happiness, sadness, release and reflection

Barretstown Gang Camp is a slice of magic in the Co Kildare countryside. It runs camps for children with cancer and other serious illnesses, and, during its spring and autumn sessions, for their families as well.

Founded 20 years ago, in July 1994, by the Hollywood actor Paul Newman as part of his Hole in the Wall Gang Camp foundation, it is set amid the wooded grounds of Barretstown Castle, complete with a “secret garden”.

The children get to run amok canoeing, horse riding, and doing arts and crafts, among other activities.

“It’s a very safe environment,” says Maria Killian, whose daughter Olivia was diagnosed with leukaemia in July 2012, when she was three.

“Just down to small things such as putting on a harness if I went to a park somewhere with zip wires. Because Olivia has a line in her chest, she has a port, which she calls her ’Freddy’, through which she gets her chemo; it’s something she’s very conscious of and there are a lot of activities she couldn’t do.

“But in Barretstown, they have proper harnesses and such well-trained staff.

“They know how to get them into these things and out again, and they’re not going to push a child to do something they’re not able to do, so you’re always going to succeed. They appreciate that little things are major for the children.”

Family affair

Olivia has a twin sister, Laura, and two older sisters, Sophie and Eve. The family, from Trim in Co Meath, have just finished their three-cycle run of camps.

Olivia finished a nine-month course of chemotherapy a few weeks before their first camp in May 2013.

“For me, it always marks when things began to change a little bit for Olivia,” says her mother. “She’s still on treatment until the end of this year. She was so low going that first weekend. She had stopped talking. Her muscles became very weak so she stopped walking.

“She was always the messer of the four of them. She was always bright-eyed, and that went during the chemo. She went very in on herself.

“Barretstown was the first glimpse that we were getting her back. She came back on cloud nine.

"It was not what I expected. I went under duress, to be honest. I thought this is all going to be Hi-de-Hi campers – and it is that – but I had not expected to see [the improvement] in her.

“They break them up into groups of their own ages, and she went off doing her little activities. Even just seeing her go away was difficult for me; it had been so intense up until that.

“Her sisters had been up and down the climbing wall. She wouldn’t do it – she spent the weekend in a wheelchair – but on the last day, she said she wanted to do it. She did the small, purple climbing wall. She was so chuffed with herself.

“It was the first time for so long that she had done something with her sisters. It was her saying, ‘Right, I’m back.’ ”

Bereavement

Another side of the story is that Barretstown also runs bereavement camps for immediate family members of a child who has died. Grace was four years old when she was diagnosed with a rare cancer. She died a year later.

Her parents, Christine and Simon, attended the last of their three bereavement camps in March.

“You’ve lost a child,” says Simon. “You’ve joined a club nobody wants to belong to, and you have feelings and emotions you would never experience if you hadn’t lost a child. People who haven’t had that misfortune just don’t understand the depth of your pain, or that it probably will never end.

“To be then suddenly in a group of 25 couples who do understand: it is a very safe place to be. You literally can say what you’re feeling.

“You’re thinking in the real world, ‘I’m the only person who feels like this – I’m actually going crazy.’ You’ll have 25 pairs of heads going: ‘We know exactly what you’re feeling. We feel the same way.’ ”

The bereavement therapist, Peter Hanlon, has overseen the bereavement camps at Barretstown since 2000.

“Parents tell me a child dying is like a bomb going off in their lives,” he says.

“With the devastation the bomb causes, to meet somebody who doesn’t say, ‘How are you since the bomb went off in your life?’ seems almost bizarre.

“Most parents want that, and they want their child’s name to be said.

“People will often say, ‘You know when somebody dies, I never know what to say.’ My answer is, ‘Well, listen, you’ve just said it.’ That’s exactly what you say to them: ‘I don’t know what to say. There is nothing I can say. Is there anything I can do?’ ”

Reflection sessions

The families share chalets together (with their own bathrooms and sleeping quarters) and join in bereavement and “reflection” sessions with Hanlon over the weekend.

“When you go to your first camp,” says Christine, “you are very apprehensive about what is going to happen because of the nature of why you are there, but you really don’t want to leave by the time the three days are up. A lot of the children would say it’s good to see mom and dad smile again.

“You’re challenged physically in the activities – I’ve climbed walls; I’ve jumped off poles 30 feet up in the air – and emotionally.

“With bereavement, you keep a lot of it to yourself. Suddenly, you have to face some of the emotions you’ve kept down and tried to avoid.”

Christine and Simon have a two-year-old boy, Conor. The focus Barretstown puts on the siblings of sick children or bereaved siblings is an important element of the camps.

“One of the things Peter said over the weekends struck me,” says Simon. “He said: ‘The job of the surviving children is to go on and live the best lives they can.’

“Yes, their brother or sister has died. That is terrible, and very sad, but I think it is very powerful for them to hear that message – they have to live the best lives they can.”

For more details, see barretstown.org