Over the next couple of weeks I’ll be off to capture some more Over The Wall camp magic with my trusty camera (having replaced my broken lens!). First up to Tulliallen Castle in Scotland, then to Grantham in the Midlands, but not for the usual type of camps that OTW run. These are both ‘Family Camps’: a relatively new addition to what the charity offer, based on longer-running programmes from the SeriousFun Network camps in the US, and our closer neighbour Barretstown, in Ireland. To illustrate what a family camp is, I’ve written another story. It’s based on a real, beautiful story from camp, but I’ve changed details (names, locations, condition, treatment and hospital) and added bits here and there to anonymise it and also give a nice picture of what it’s like when a whole family comes to camp.
The Barrets lived in Norfolk, mostly. I say mostly because for the past eight years, mum Nicole has been travelling across the country to take her son Matthew to Birmingham Children’s Hospital for treatment and follow-ups for a debilitating condition he’s had since birth. He was born too early, and developed a disease that rots away some of the gut, resulting in him having to be nutritionally supported via a feeding tube through his abdomen, directly into his bowel. As he grew, he also suffered a number of lung problems that have landed him with a dizzying array of inhalers and tablets to take each day. Matthew’s frequently unwell with infections, meaning Nicole often has to stay with him at the hospital, leaving her other, younger, son Robby at home on the other side of the country with Nan. Matthew misses a lot of school, and Robby misses a lot of family time. Nan has her own health problems (although Matthew enjoys the fact they have the same inhalers!), and has had to move into Nicole’s house to help look after Robby. This also to avoids the hefty ‘bedroom’ tax thrown at the family because technically Matthew’s room is empty as he’s in hospital so often.
Matthew’s condition, frequent hospital visits, and tiring daily medication routines (including nightly feeds from a machine directly into his gut, and a strict calorie intake each day) have taken their toll on the Barrets. Matthew and Robby’s dad, Peter, separated from Nicole last year. The arguments caused by differing opinions on Matthew’s care, barriers and abilities were too frequent and created a sour environment which Matthew had started to resent coming home from hospital to. On top of this, Robby’s behaviour at school, as well as his performance, had plummeted and despite the schools’s best efforts at pastoral support, he was bordering on exclusion.
At one of Matthew’s outpatient appointments in Birmingham at the start of a new year, one of the nurses was chatting to Nicole in the waiting room. She’d recently come back from a week away with a charity called Over The Wall, where she’d been part of the medical team looking after 80 children, all with serious or life-limiting illnesses. She suggested that Matthew might benefit from such a camp, and Robby too from one of the sibling camps, so gave Nicole a leaflet. Neither of the boys had ever been away from home on their own (Robby was not allowed on the school trip due to a recent spell of poor behaviour) and the last family holiday, before the separation, had been years ago – even that had been cut short when Matthew picked up a nasty lung infection. Nicole figured it would probably be fun for the boys but that the family weren’t in a good place to cope with it yet. Later that week, however, Nan was reading the discarded leaflet and saw that there were also some shorter ‘Family Camps’ that seemed to be like a taster camp. It seemed ideal, and Nan put in an application for her, Nicole and the boys without telling a soul. She did run it last Dad Peter first, as it would be over a weekend where he saw the boys usually. He said it sounded a great idea and was more than happy to swap round the times he would have them.
A flurry of confusion and excitement whizzed round the house in the run up to camp. The medical team had contacted Matthew’s doctors and found out all his requirements to be safely cared for whilst at camp, and the camp ran over a bank holiday weekend s Robby didn’t even need to miss any school. He had, however, been upset he wouldn’t be going to Dad’s that weekend. After two weeks of tears and nagging, Peter suggested that maybe he should join them for the weekend. The boys were delighted, and Nicole figured they could manage for the three days they’d be at camp. After all, they’d recently been doing more activities such as cinema trips together with the boys, without too many arguments to speak of.
The family didn’t really know what to expect before they arrived. As they were unloading bags from the car, a volunteer was assigned just to them for the weekend. It turned out that the volunteers at family camp were all very experienced from the full kids’ camps, and it was their job to guide them through the activities planned for the weekend, as well as talk to them about how a full camp works. Their volunteer even shifted all the heavy boxes of overnight feeds and equipment to the ‘med shed’.
The weekend was packed full of activities, with mealtimes being the only time anyone had a chance to sit down. Before they’d even got to their room, the boys had found the fancy dress room, and as if by means of a sixth sense, were navigating towards a volunteer who was dishing out face paint. After a brief introduction to camp from the delightful camp director, and more than a few camp songs (where everyone, including Nan, did the actions), it was straight over to the obstacle course for some problem solving activities. Mum, Dad and the boys worked with another family (whose wee girl had a bandana on, presumably covering her bald head) to complete all sorts of problem-solving tasks. The kids were challenged at each stage by the volunteers, and huge cheers and congratulations caused the birds in the trees surrounding them to fly off at the end of each task. Nan spent most if the time chatting to a very handsome volunteer who, when not at camp, was a detective inspector with the police, which she thought was ever so exiting. She only put a pause to their chat when it was her turn, encouraged by the rest of The Barrets, to go down the enormous zip wire (something which, at 86, she thought would never happen!).
Many more activities followed, with a constant energy level supplied by the never-tiring volunteers. By the end of the weekend, Nicole realised that Robby had been impeccably behaved, not a single negative word said to him. We then realised, with a shock that brought tears to her eyes, that Matthew had been taking his meds and inhalers without prompting, all by himself. He’d even set up and then cleaned his own nighttime feeds machine (with a little help from his volunteer), without her even noticing. Matthew had done more in a weekend than he had even done in his life, without his daily care getting in the way. The barriers that they presumed he had, because of his condition, were nowhere to be seen. She had to get Peter to pinch her to make sure it was real. They left family camp singing and dancing all the way to the car, waved off by all the volunteers and the other families who they’d made friends with and seen coping with exactly the same problems they were having to cope with. Before she left, Nicole gave the nurse from the children’s hospital, who happened to be part of the med team at that camp, a tight squeeze, and a whispered ‘thank you’ in her ear.
I heard from another volunteer that they’d bumped into the family at the hospital recently.i’d known Robby had been to a siblings camp by himself and that, all being well, Matthew was due to attend one of the serious illness camps in the summer. What I didn’t know, which inspired this story, was that Nicole and Peter were back together. They’d realised, in the three days they were at Family Camp, that they both wanted the same for the boys, and that actually Matthew could do what any other kid can do, given the right encouragement. Of course, the above story has elements of fiction and idealisation to it but in essence is true and shows the power that camp can have on families affected by serious illness.