For years, doctors tactfully talked to our child about her ‘different blood’. Of course she had to have some explanation for the daily medication, constant blood tests and trips to hospital.
But how can you properly prepare a child for the secrets and stigma which are to come in the grown up world? There is no real lesson for the life in the shadows that beckons with the revelation of three small letters. That part is not in a book.
My husband and I prepared for weeks. We consulted psychologists, read books, even wrote flashcards. When the day came, it was just the 3 of us, at home in our lounge. I was too emotional to get the words out, so my husband stepped up with admirable calm.
At the end of his explanation and after a reassurance of our love, our daughter simply curled up in a ball on the floor silent. Of course, she had us and other close family members. But now she had a label; three letters she would have to process, on some level, alone. No teachers to tell, no close friends to message, no place in the world to shout it out loud.
For a year her defence was denial and understandably so. She didn’t want to talk about HIV or anything related to it. The meds were a constant reminder but she washed it all away with a daily glass of water.
We’d heard of ‘The Camp’ from HIV nurses – a magical Wonderland where children disappear down a rabbit hole of self discovery and emerge more accepting of themselves and their condition. But our daughter resisted – afraid to let those three letters in.
Then she hit a low and a wonderful consultant simply told her: ‘Go to camp. You will make friends for life who will get you through these difficult times.’ She refused to discuss it for weeks then suddenly said: “I’m going”.
We were elated but terrified. What if she ended up sitting on her own? What if the therapy became too much? What if…..what if. As we hovered over her at the coach station, she simply gave us a hug and said: “Grow up Mum and Dad, I’ll be fine.”
After what felt like a year, we were back at the station (2 hours early!) and waiting for her return.
Our child had gone and a young woman re-appeared before us. She looked physically different. Her head was held higher. Her shoulders were back a bit further and she had a happy, relaxed look on her face we hadn’t seen for a long time.
She simply said: “Next year I want to go for 6 weeks.”
The CHIVA Camp is about the power of a group, the power of a space (the only space) where the secret of having HIV can be openly shared. It allowed our daughter to simply be who she is without smoke and mirrors, a state of mind too many of us take for granted.
She’s never really told us much about what went on in Wonderland and that’s ok. But the consultant was right, she came home with a new sense of self-belief AND a set of friends who now consume a vast amount of bedroom FaceTime. That’s really ok too.
Of course there will be other challenges to face. Living with HIV, and its depressing stigma, is a daily challenge for all the courageous kids and Camp isn’t a magic cure. But it gives young people a solid ground from which to go out and walk the path.
On behalf of our family and all the others who have experienced the CHIVA camp, thank you SO much for supporting it. You have helped to change our children’s lives.
This is a charity story from CHIVA.