This week we rented a beach hut on St Annes Beach. Charlie was instantly at home. Trying to run, of a fashion, barefoot up and down the sand, sitting on the deck laughing at the dogs walking past and laughing at the girl from the next hut blowing bubbles our way. We will be doing more of this as we are back to homeschooling. The mainstream school Charlie started at didn’t last long so we are awaiting news of a specialist school soon. Mainstream proved very upsetting for him and he became angry and depressed, more anxious than ever at the fact that I suppose he felt he didn’t fit in and couldn’t get his point across.
It’s no coincidence to me that now he is being homeschooled again he has settled down and whilst he is a little bored and more than a little isolated he did manage to go to an appointment with his autism paediatrician which is a first as usually he has to be seen on a home visit. Although he sat with his back to him and didn’t want to talk, its a step in the right direction. At home Charlie is the opposite of what he is outside our front door. He is quite relaxed, sociable, a storyteller with a fondness for jokes and his big hearty laugh I’ll bet can be heard down the street. He is also the kindest person I’ve ever known. All that changes when we step out of the front door. Inside he likes himself, has some self-esteem, learns easily and chats incessantly. Outside he is fearful of what people think and want of him and he becomes miserable, vulnerable, anxious and unpredictable. The beach hut is a way of extending our daily walks with Floyd. Opening up the possibilities of socialising in a natural setting whilst still being able to go into a room and shut the door if necessary. Even then the hut remains a room with a view. A breathtaking one. A good view for a person to drink in through the eyes.
For some time I’ve been thinking of setting up a small charity because I’ve been so moved by the suffering I’ve seen. But a simple charity. Something slightly ‘work-like’ to give me a sense of purpose outside the day to day life of scooping up lego, reassuring Charlie that there are no bees in the house, cooking and filling in the holes in the garden that Floyd continues to dig. So it seems its been right in front of me all this time. Travels With Charlie as a charity. It’s only purpose to provide families who have been affected by childhood cancer with a day by the sea in a beach hut. Simple. There wasn’t a day went by when Charlie was in hospital having treatment that I didn’t wish we were looking out on the sea, when I wished we could hear the cries of gulls rather than the cries of kids having nose tubes or a cannula fitted. I find the beach the most uplifting, beautiful, hopeful place. Oxygen levels are meant to be richer on the coast and it’s for that reason that years ago trips to the seaside used to boast of ‘taking the cure’. Whilst it makes me smile a little, I can’t argue that fresh sea smelling air, sunshine, the wide open horizon and the lapping of the water on sand won’t make a person feel better. Whilst Charlie was recuperating we would drive down the coast road every day, all through spring from Lytham, past St Annes to Blackpool. Driving down the Golden Mile that I had always previously found hideously tacky took on a new meaning. I was still with my boy, although he couldn’t walk and still looked ill, he was still my co-pilot in the front seat, smiling a little as we drove past the sand, the piers, the tourist attractions and looking out to sea at the sunsets every night we found a new routine that seemed to spur us both on and give us hope that things would get better. And they did. Come the summer months we would take Charlie’s trike down to the promenade. Whilst he still couldn’t walk he’d build the strength back in his legs by riding his trike every day until one day in the warm summer sun, next to the waves, he found he could walk a little. In autumn whilst he was still afraid to do much outside of the house, we would drive through the illuminiations along on the waterfront in Blackpool, through the thronging crowds that were laughing and eating candy floss, past the bright lights and rides twinkling against a black canvas of sky and Charlie would feel like he was part of it. More smiles. More hope that things would improve.
So for families that have been through the same, a day by the sea, I hope will make them smile, give them a sense of calm for that day, perhaps make them feel that things might get better for them too. A place to make memories and smile over again when they go back to hospital for treatment or for those families who are the other side of treatment hoping never to need to go back to it, or for families who are without the child that their lives were once so full of. In every situation its a day to be together and that in every way, life carries on and that what you do with it is up to you. And a room with a view becomes suddenly much more than just that.