All the best things happen when they happen unexpectedly. At a routine clinic appointment for Charlie one of the other parents commented how wonderful it was that Charlie was walking again. I was confused. Sorry? Walking around? Yes, they said. Apparently when I’d slipped out of the room he had risen from his wheelchair and made for the toy table like a tank. And he continued to do it. And I roared with laughter at the cheek of him making us look like Andy and Lou from Little Britain. Charlie laughed too as if to let me know I don’t know everything about him, as if to say ‘I can out smart you, I can out think you’. Charlie loves his hospital visits, so institutionalised has he become that now he can’t get enough of medical programmes at home. At this rate I’ll be buying him 24hrs in A&E box set for Christmas. And he carries his stethoscope around with him at home like some sort of mini Dr Alan Statham from Green Wing. Joking aside he is improving in all areas which is wonderful to watch. Slowly emerging. Slowly. The youngest, oldest six-year-old in the World.
We aren’t quite the same people we once were when we were more beautiful and innocent. We are tougher for sure. Make no mistake, I know we could survive anywhere. Because we have our wits about us and our positivity, our inner steel. If you have been through cancer or you have nursed someone through it, congratulate yourself. You have experienced a war and come through it. Even if you’re on your knees, you have come through it. And if you’re like us now is your time to re-build. Most people congratulate me and say he’s beaten it, how fantastic it is. And it is. But they don’t realise how close neuroblastoma is to being a terminal disease. That all those families that make up the small neuroblastoma community are all slowly losing their minds with worry about a relapse or are fighting against statistics. Most days for me are fine. It seems a strange thing to share but I grew up in America where ‘show and tell’ is the order of the day and the culture is all about positivity and self-help. I have a strange ritual that I have carried on with since our nightmare began. In the hospital, when Charlie was having chemotherapy and spent most of his days asleep, during the times he was very poorly, I would listen to music and watch him as death looked on at us through the window. Just as Jack London’s Darrell became the Star Rover to escape incarceration, so I would curl up in the melody, let my thoughts drift away in the beat to somewhere uplifting. I should explain the Arts are a massive force in our house. Books, music, film, art, dance. So energised would I be at listening to music that I felt as if I was glowing. I felt as though my hands were on fire. And I would lay my hands on him and feel so connected to him. I felt energy pass between us and it felt good. I don’t have a God but this is where my religion lies. In this energy between us. I would go as far as to say that this bond and energy we share is one of the reasons he is still alive. I know medically he is still here because of the bags and bags of blood and fluids and chemo he has received. At the doing the right thing at the right time. That is what we can see. What we know. But what of things happening on different frequencies? Of what we don’t know? So much comes from our hands. Comfort, reassurance, arousal, goodwill, bad will. I believe the technical term is Reiki, the laying on of hands, the healing hands. Perhaps thoughts like these are what happens to someone who has seen their child slipping down the rabbit hole, only to crawl back up. That thing that keeps you going. Either way most people need something to get them through; the booze, the pills or the Church. I think I’ll stick with my energy and I’ll need it in this cat and mouse game of neuroblastoma. It’s never having Him. Not on my shift. As Morrissey sang. There is a light that never goes out.