If there is one thing that the parents who are invited to visit Barretstown Castle have in common, other than the fact that they have seriously ill children, it is fear. Barretstown Gang Camp in Ballymore Eustace, Co Kildare, may be set in 500 idyllic acres of lawns, gardens, woodland and rolling hills, but the idea of going there is terrifying for many.
Some are afraid of opening up and others are afraid of letting go of responsibility for their children so that they can enjoy themselves. Some even refuse the invitation initially.
Barretstown, which is a sister camp of the Hole in the Wall Gang begun in the US in 1988 by actor Paul Newman, was designed to help individual sick children with diseases, such as cancer and haemophilia, to have the usual kinds of adventurous, summer-camp experiences which are necessary for normal psychological development. Nearly 500 children from 18 European countries will benefit from Barretstown's programme this summer.
It's not only the sick child who suffers in a family: the risks of marital breakdown and of behaviour problems in the healthy siblings are high. Having observed such problems, Barretstown last year began a new programme for the families of sick children and this year it will help more than 400 children, their families and carers in spring and autumn programmes. On arriving at Barretstown, the families soon learn to their relief that Barretstown expects nothing of them, except that they enjoy themselves. There's no therapy trip, no heavy social-worker vibe and no schedule of mandatory activities. What they do find, are perfect little cottages for them and their children to stay in: a "friend" dedicated to each family, so that parents can get a break from 24hour caring; three meals a day and a variety of camp-style activities, such as arts and crafts, fishing, boating and a range of sports, including tennis.
IT may sound modest, if you're a healthy and relatively well-off family who can afford a luxury holiday every year. But if you have been caring 24 hours a day, 365 days a year, for a critically-ill child, a weekend in Barretstown - you soon discover - is bliss. When she was invited to spend a weekend at Barretstown in May, Teresita Higgins was, like most, apprehensive. She'd been living on an emotional knife-edge for two years and didn't see how a weekend at the camp could help.
She says in retrospect that it wasn't until the weekend was over that she realised she had forgotten what it was like to feel relaxed.
Teresita and her husband, Seamus, had been caring non-stop for nearly two years for their five-year-old son, Stefan, who was diagnosed with leukaemia at the age of three in July 1996. What made it even harder - for Teresita especially - is that the couple's second child, Arianna, was only six months old when her brother was diagnosed. To care for a pre-schooler and a baby is exhausting at the best of times but when one of them is undergoing radiation therapy and chemotherapy, requiring the parents to maintain 24-hour hyper-vigilance, the task is unimaginable. Stefan and his sister are young and oblivious of the seriousness of Stefan's illness. They're happy children and hardly affected at all emotionally, Teresita thinks.
For Teresita and Seamus, however, the pressure of the past two years has been appalling. The weekend in May was the first time that Teresita and Seamus had been able to spend an hour or two alone together since Stefan was diagnosed two years ago.
"It's hard to find a place where you feel safe enough to leave your child with others," says Teresita, whereas in Barretstown, "each family is assigned a `friend' and the estate is closed to the public so you feel totally safe."
On the first night they arrive, most parents are too scared to leave their children in the care of the baby-sitting service, says nurse Lindsay Richardson, medical co-ordinator. By the second night they have usually relaxed enough to take up Barretstown's offer of baby-sitting while the parents are provided with transport to a local pub. Teresita found the pub night to be both enjoyable and subtly therapeutic.
"We were with people who were going through the same experience as ourselves. We all talked about the kids, of course. At the end of the weekend, I felt so relaxed and my husband felt the same. It was an escape for us. For two days and two nights we had no real worries. I went canoeing, which I had never done before. And my husband enjoyed the archery. My husband says that, looking back, Barretstown is one of his happiest memories. It's a very happy place."
The normal togetherness which most families take for granted may be rare for the families of sick children. Lindsay Richardson says that "from my perspective as a hospital nurse, you can see that families are split up by a child's illness".
On a practical level, parents cannot be together because one must remain with the child in hospital while the other gets on with daily life and caring for other children. Emotional barriers may arise between the parents when the one who sees most of the child's suffering is afraid to share the truth with the parent who remains at home. The result may be a dangerous loss of intimacy.
Likewise, the healthy siblings miss the parent who has left to care for the sick child. "They may be looked after by grandparents or other relatives and they feel isolated. And you find that often they don't even know what's going on," says Lindsay.
"At Barretstown, we offer them a chance to be a complete family for a weekend. They're able to do things together, to have the normal sharing that families have."
Emer Kinsella, a nurse at Barretstown, has observed that parents of sick children may live in devastating isolation. On a recent weekend for children with immunological diseases, there were families affected by HIV. One mother had told one or two close friends that her young son was HIV-positive but due to the stigma of the AIDS virus she had been too afraid to tell her own immediate family. "She didn't want to be at Barretstown at all but once she began to feel safe her guard went down and she opened up," says Emer. The mother left Barretstown with the telephone numbers of new friends in the same situation who she could ring and talk with.
"At the beginning of the weekend, parents have so much fear. At the immunology camp, there were parents who had seen each other at clinics but had been afraid to speak to one another. By they second day, you can see them relaxing," says Emer. A chance to relax may not sound like much but when you're used to spending every day praying for miracles, an opportunity to let your hair down even for a few hours is a little miracle.
