I remember so clearly as a kid, living in States, riding my bike around with the other kids, the neighbourhood dogs yapping and scrapping in the streets. Playing dare-devil and riding down Dead Man’s Hill, picking up speed on my bike, letting go of the handlebars, the wind whistling past my ears and making my hair fly out. Raising my hands and smiling face to the clouds, closing my eyes tight with excitement hearing Bruce Springsteen playing somewhere on the sidelines. I remember swimming out further than anyone else in the sea, looking at the heat haze on the shoreline and my parents, little waving dots on the sand. Giggling in the quiet peace that is offshore with the salt water slapping at my face, thinking no sharks will get me. Thrilling. I can recall the memories so well that I can make my stomach flip with adrenalin. That was then. Now there are very grown up circumstances that make my stomach flip. Like re-scans, looking for neuroblastoma in your boy’s little body. And I find I’m not so great at being a dare-devil anymore.
Charlie has had his end of treatment scans last week which show no uptake of neuroblastoma again so the results are great. He is up and walking about without having to use the wheelchair now. Painful and stiff still in walking but trying to run nonetheless. My Braveheart. His hair continues to amuse me and is now dark, curly and bushy, distinctly starting to resemble a ‘fro. Being the odd little soul that he is, he loved returning to hospital for his scans, this time venturing up to the rooftop playground and down the corridor of Ward 84 which has been his home for the last year. Hobbling with his funny gait chunnering to himself and at whoever was passing, “I’m just minding my own business” in his sing-song voice. Intent on seeing what was happening, looking who was around, looking for some action. For the time has come where he needs to branch away from me a little, to feel who he is around others. I can see that clearly. And so it was that after a little bust up that he and I tend to have from time to time when sharing a confined space, he flounced off down the corridor on his own. His parting words were “Shaddap Mummy, I’m gonna lose you!”. I watched him half smiling, half frowning at the thought that not only did I never expect my son to get cancer but, I never expected my son would tell me to shut up, and neither did I ever think I’d tolerate it. These days I just don’t sweat the small stuff. To my absolute amazement, I saw him sidle up to Nurse Rose and take her hand and carry on walking with her, chatting about I don’t know what, occasionally looking back to check I wasn’t following him. He has never held anyone else’s hand before. My jaw fell open. As so often is the case with Charlie, one mustn’t ever underestimate him.
As a treat this week we visited the Holy Grail (for Charlie)….Thomas Land. Its been on his list of ‘must do experiences’ for years now. He knows Thomas Land like the back of his hand. He’s been reading his maps of the place and watching other people experience it on YouTube for a while now and this week his virtual world exploded. Going through the gates I saw that look of astonishment every kid gets when they are over-awed by the magic of something. That in itself makes it all worth it for me. However with hindsight I think Charlie is best being an armchair traveller. It wasn’t long before his fingers were in his ears at the noise and commotion of it all. Valiantly he managed two rides and the shop. Then in the heat and the chaos it all became too much and he shut down. Crying, refusing to eat and drink, shouting he needed a homebreak, shouting he hated me and refusing the wheelchair despite being in pain walking. I’d reached my limit and shouted back like a big kid. The heat, the long drive, the helplessness of it all. Somedays I just want to divorce myself. It wasn’t my finest moment. Of course in the car, we had a kiss and both said sorry, buckled up and made for home with haste watching the sky turn pink. With the air-conditioning on. And that’s how it is sometimes really. As in life as in love affairs with little blue trains. Shit happens.