This long hot summer has seen us more and more at the beach. It is where Charlie is in his purest form, electric with charisma and humour and losing his pants to gravity with the ferocity of his path through the salt water. The carefree happiness emanates from him. Standing still on the sand in quiet conversation with himself one minute, then dancing off like a grace note, rolling down the shoreline, squealing in a staccato euphoria, making his strange tai-chi shapes in the air, drops of water falling from his fingertips. It is a shot of adrenalin to see. Quite magical. A sight I never imagined I’d see again. Charlie crashing through the waves, thighs like Thor, his smile as broad as the sunny horizon. I point my camera at him thrilling at the attempt to capture him down the tunnel of my lens.
It is a very wonderful life we have but sometimes hard and complicated. This confusing and chaotic world of ours leaves Charlie muttering worriedly, ticking and shouting at strangers.
Given his cancer diagnosis I quite often ponder that he wasn’t even supposed to be in my photo frame. I think about it a lot these days. The future, the present, the past. What really does happen when you die? What’s the point of all of the now if it is over so quickly? Big questions wondering if he does get to lead a long life, what might that look like? Will he manage to be independent or will he remain ever vulnerable? Dark and desperate questions every parent of a disabled child has to face. And then come the questions about his cancer. The ever present questions hovering in the atmosphere. Ominous and unanswerable.
But life isn’t always about questions. Sometimes its feeling his warmth as he leans into me for a hug and a brief moment’s break from Minecraft. Sometimes its smiling, watching him run into his new classroom and forgetting to look back at me in goodbye such is his excitement to be a part of his new school. As a girl I remember reading Nabokov’s Lolita and I’ve been forever haunted by Humbert remarking on the absence of Lolita’s voice from the chorus of children at play. I hadn’t heard Charlie’s voice mingle with the melody of other children until his starting school this September. These little moments are golden. These simple, everyday moments and the fact that I still have them. That is magic to me.