'Little Edward' was a big child. I mean
he was really huge; he had men's size 12 feet when he passed on at
the age of eleven! When he was four years old I would wear his Ninja
Turtle sneakers for a laugh. He thought it was hilarious, seeing his
adult sister stomping around in a pair of kiddies' shoes!.The reason
we still think of him as 'little Edward', is partly a little family
joke and partly because, for all his massive size, Eddie had the
softest heart. He tried rugby at school, but he stopped very quickly.
It was too violent, and he could get hurt. He didn't like anybody
being hurt; it really upset him.
How tall he was at the end, I don't
know, but I remember he towered over me before he lost the ability to
walk. When he became ill, his size became a real difficulty, mostly
because no-one except my mother had ever had to deal with an eleven
year old child the size of an adult. She was the only one who could
move him from the bed to the wheelchair or bathe him without causing
him an agony of pain in his leg.
Tygerberg Hospital being what it was,
there was no way he was going to be able to explain this to the
orderlies who had to move him from his bed to a stretcher so he could
have an X-ray done. The language barrier was too huge, the problem
too complicated to explain in a few words.
I knew none of this, as I could only
spare a couple of days a week to be with him, whether he was at home
or at the hospital. Mum and I visited with him for a little while,
and then the nurse came in and told him he was going for an x-ray.
He didn't cry, or even protest,
although he could sometimes be very vocal about what he wanted. He
had been playing Mario Brothers on his Nintendo, and he passed it to
me. He'd let me borrow his pride and joy a couple of times and I was
quite into the game by now.
'Play on with my game, please?' he said
to me, 'I have 6 lives, so you should be able to play for a long
time. Don't lose my lives though, ok?'
'Ok,' I said, surprised. This wasn't
normal. Usually he wouldn't let me near his game.
'Now go into the waiting room and don't
stop playing, ok?'
'Ok,' I said, and obeyed, wondering
what he could be up to.
I saw the two orderlies walk past
pushing a stretcher between them, but I played on, as ordered. A
couple of minutes later Eddie started to scream at the top of his
lungs. I cannot describe to you what it felt like to have to sit
there, with my bum glued to the chair, and not cry because I had to
keep playing, listening to the sounds of raw agony coming from this
child I wanted to protect with all my soul. I cannot, for a moment,
imagine what it was like for my mother, his mother, standing
next to him helpless in that room while the orderlies dragged his huge frame onto the stretcher.
My shoulders were heaving, and I was
gulping in air, trying not to start screaming myself. I wanted to run
in there and stop them but I couldn't, I had promised to keep
playing. I knew at that moment that his giving me the game had been
entirely conscious and calculated.
He was protecting me from his pain.
How is that possible? How did he know
to do that? How could it be that he was thinking about me in
that moment? I just don't know, I have no answers...
Maybe a small part
of Eddie's purpose was so that I could write his story, so that you could
understand a small part of the reality that is childhood cancer. It's
ugly, and it's tragic, but there are beautiful bits too; like the bright red little cherry tomatoes that grow on a rubbish dump. And, it's a story that has to be told. Children like Eddie, like Xuane, like Reef, and like little Estiaan who passed over recently, they all need a voice so that the world can understand that they are real children, with real families. Their suffering is real, and so are their triumphs.
'
No comments:
Post a Comment