Of course... this had to be the first post in this section. Although it wasn't planned.
I think I'm having something of an epiphany. It's still confused and I'm not quite sure whether it is good, or bad. Probably neither, just a change of state.
Regularly over the last six years I've been in touch with families who have a child with JMML. But not until today did I really feel that Tom belongs with these children - not really. And actually, not until today was I able to feel that this was Tom's fight more than mine.
I feel so selfish. Tom was the one going through the illness, the tests, the medication.
What I am coming round to is the word "Survivor". it's a word I have mixed feelings about, as is the word battle when it's linked to cancer. There's another word I've been shying away from. I've always thought "leukaemia", but I think that's because I was afraid to say cancer. The trouble with battling cancer is that if the medicines and your immune system don't stop this growth of cells, then you have lost. And I don't consider any child or person who died of cancer to be a loser...
Don't get me wrong, I don't think anyone does. But in my mind, my personal mind, I cannot separate one from the other.
And another thing... I really don't want to dignify this awful family of diseases with such an awsome and fearsome persona. Not only is it an enemy, but it's an enemy within........
I may be getting this all wrong, and if you are in the situation that many of my friends in far away lands are in, please accept my heartfelt apologies. I need to write this to make some kind of sense of it. These are words that have been lurking in my mind for many many years, and they are bubbling up without much order or thought of consequence.
But.
Because of these feelings, and because Tom's fabulous little body vanquished that enemy within, I have never thought of him as the survivor. In fact, I have thought of him as the intruder - it can't really be cancer if you can "stabilise" and "recover".
And for me as his mum to have these feelings is fine - they are my feelings, and it is up to me to work through them and understand better how to deal with them.
But in all this time I have denied Tom his just title. He is a survivor, and a fighter. That little baby at three months could have just stopped. He was literally nothing but skin, bones and a huge liver and spleen. But he didn't stop. He smiled through it all, he calmed and became happy when he heard my voice on tape in the hospital, he kept on living.
In those first six months of life, Tom lived with more ferocity than most of us do in a lifetime.
He put up with all the tests, all the needles, all the tubes.
He made his Mummy smile even as his illness made her cry.
He fought this beast we call cancer that was eating away at his body and his family, and he fought it for all of us.
And he won.
Thanks to the genetic mutation that gave him this cancer, he won.
I've just learned about Relay for Life, and I hope to participate. I don't know when I'll be able to talk to Tom about all this. I don't think I want it to fade into nothingness, but he's far too little.
To think that I've always been so open with the boys. That Zack proudly calls himself an Aspie, and Tom wants to wear a t shirt that says "I have Noonan syndrome".
But he doesn't have one that says "I beat cancer"
I think I'm having something of an epiphany. It's still confused and I'm not quite sure whether it is good, or bad. Probably neither, just a change of state.
Regularly over the last six years I've been in touch with families who have a child with JMML. But not until today did I really feel that Tom belongs with these children - not really. And actually, not until today was I able to feel that this was Tom's fight more than mine.
I feel so selfish. Tom was the one going through the illness, the tests, the medication.
What I am coming round to is the word "Survivor". it's a word I have mixed feelings about, as is the word battle when it's linked to cancer. There's another word I've been shying away from. I've always thought "leukaemia", but I think that's because I was afraid to say cancer. The trouble with battling cancer is that if the medicines and your immune system don't stop this growth of cells, then you have lost. And I don't consider any child or person who died of cancer to be a loser...
Don't get me wrong, I don't think anyone does. But in my mind, my personal mind, I cannot separate one from the other.
And another thing... I really don't want to dignify this awful family of diseases with such an awsome and fearsome persona. Not only is it an enemy, but it's an enemy within........
I may be getting this all wrong, and if you are in the situation that many of my friends in far away lands are in, please accept my heartfelt apologies. I need to write this to make some kind of sense of it. These are words that have been lurking in my mind for many many years, and they are bubbling up without much order or thought of consequence.
But.
Because of these feelings, and because Tom's fabulous little body vanquished that enemy within, I have never thought of him as the survivor. In fact, I have thought of him as the intruder - it can't really be cancer if you can "stabilise" and "recover".
And for me as his mum to have these feelings is fine - they are my feelings, and it is up to me to work through them and understand better how to deal with them.
But in all this time I have denied Tom his just title. He is a survivor, and a fighter. That little baby at three months could have just stopped. He was literally nothing but skin, bones and a huge liver and spleen. But he didn't stop. He smiled through it all, he calmed and became happy when he heard my voice on tape in the hospital, he kept on living.
In those first six months of life, Tom lived with more ferocity than most of us do in a lifetime.
He put up with all the tests, all the needles, all the tubes.
He made his Mummy smile even as his illness made her cry.
He fought this beast we call cancer that was eating away at his body and his family, and he fought it for all of us.
And he won.
Thanks to the genetic mutation that gave him this cancer, he won.
I've just learned about Relay for Life, and I hope to participate. I don't know when I'll be able to talk to Tom about all this. I don't think I want it to fade into nothingness, but he's far too little.
To think that I've always been so open with the boys. That Zack proudly calls himself an Aspie, and Tom wants to wear a t shirt that says "I have Noonan syndrome".
But he doesn't have one that says "I beat cancer"
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