As Autumn sets in so too does a sense of normality about our lives. Little things like shopping for food, learning to swim at the local pool and the planning ahead for celebrations and holidays. So comforting and yet at the same time disarmingly frightening. Takes some getting used to.
When your child has been ill it seems as though all you do is concentrate on health, like a lighthouse keeper watching and waiting for a storm to show up, making a wreck of all in its wake. It has come as a shock to me that actually Charlie has grown up considerably. I’m still helping him on with his clothes and shoes and yet great changes are happening to him. Our last visit to the hospital for a check up was startling. His consultant was able to examine him without a fuss for the first time. Charlie seemed to enjoy it and even bid him a congenial goodbye. This is a boy who has shouted and swiped his way through all of his treatment. As it goes it was a bit of a moment for me. Either he has decided that they are old friends now or perhaps his system has quieted a little. Even the fly on the wall must have held his breath and fallen to the floor in utter shock. And that’s the thing about Charlie. Just when you think you have him pegged he will surprise you. For all that you know about him, there is that which you don’t.
This month we tried hyperbaric oxygen therapy. It started great. He was calm. I put his helmet on when we were at 10 feet below in the diving chamber. He was fine about the popping noise in his ears. Then the oxygen started and he had a panic attack at the sound of it. Apparently he’s a wee bit traumatised by the sound of oxygen hissing out of a pipe after all the times he’s been under. Major bummer. Still you always have to find the funny and we did have a giggle on the drive home about him screaming “Land it! Land it!” when we were still in the tank. He was wearing a space helmet you see.
This fear of an oxygen mask is up there with clowns and is the major reason why he won’t set foot on a plane….or in a circus. Which brings me to his new love. Caravans. He calls them ‘not bad little hotels’ and adores everything about them. Being a homeschooled kid I can’t help but think we may have to own one soon and take advantage of the freedom of having no timetable and the open road. I get the impression he would like to fast forward his childhood. He constantly talks of being a man. He refuses to call any learning school work, preferring to say he is at the office doing his work. He also talks frequently of wanting to go to the girlfriend shop. A magical place where he might find a slim, quiet blonde who he could talk to about Thomas the Tank Engine trains. On these points he is specific. I haven’t the heart to tell him the only place he is likely to find her is at the top of The Magic Faraway Tree. Some things you have to find out for yourself I guess.
For myself I’m keeping busy in blotting out the flashbacks that lead to reliving sections of time that I’d rather not. Keeping busy in trying to find a new house for us which is proving an arduous task. Only when we have a new perch will I be able to buy Charlie his longed for dog who he has already christened Floyd. Only when we can stand still after the storm in our new pad will I feel my own system calm slightly. And hope that I won’t feel the anticipated fear of flashes of the last time that we lived on our own, when my days were spent desperately explaining to schools and hospitals over and over that my child couldn’t eat or walk very far, and why my terrified nights were spent pathetically trying to stem my child’s pain of his spreading cancer with calpol and warm baths at 2am. In that isolation I had nothing but my intuition. For the moment, mope is my washpot. I do spend a great amount of time dwelling on thoughts like this:-
a body in balance x a positive happy disposition x intuition x a sense of humour
I can understand everything that has happened apart from that ‘chance’. I am horrified at it and I am fascinated by it in equal measure. I believe the shrinks call it post traumatic stress. I call it my reality. Unfortunately I’m not too great at talking to strangers about my inner workings and I can’t see I’d find solace in the bottom of a bottle of booze or pills. Jealous am I of people who have a faith but as I just can’t believe in it, the only thing I can see that will wash away the grime is a cocktail of stiff upper lip, a positive mind, music, vegetable juice, Bach’s Flower Rescue Remedy and in the being able to write about it. Imagine being rescued by a flower. We all have our own version of crazy. Cheers.