Monday, May 21, 2012
Over the past week or so I have slowly withdrawn from almost every 'Special Needs' support group that I am part of. There are lots of reasons for this... but mostly at the moment I find that it's because I just don't seem to do well in a group environment.
I am getting so very very fed up with people who have opinions. Sadly, everyone has one... and even sadder is the fact that almost no one will keep theirs to themselves.
Cancer is such a horribly, ugly, common disease and there are very few people who remain untouched by it's grasp... yet it is something that affects everyone so very very differently. No two journeys are the same...
To me... it's hell.
To me... it means missing out on seeing family and friends because she is neutropenic and can't be around other people for fear catching a bug that will land her in hospital.
To me... it means never having a night off, no date night with my husband, no coffee with my friends, no break, at all. I am here 24/7.
To me... it means watching my beautiful little girl suffer in ways that no child should ever have to suffer. Dosing her with copious and ever increasing amounts of drugs just to try and get her through every day as comfortably as possible.
To me... it means sitting through hours of chemotherapy, blood tests and follow up appointments every week just to try and get a little bit of a break.
To me... it means seeing her little body waste away, her cute little chubby cheeks vanish, her cheeky smile fade into a face that is drawn and sunken with pain.
To me... it means feeling sick with absolute fear and dread for a week before every re-stage/re-scan/re-evaluation that we will be handed yet more bad news.
To me... it means smiling on the outside when inside I just want to curl up and cry. Pretending that I am strong and everything is just fine, when really I'm dying with fear and feeling utterly terrified... acting like I don't feel totally alone.
To me... it means prioritizing my money every week, making sure that first and foremost her medications are paid for, followed by her other expenses, like trips for chemo, then other bills and essential costs... trying to make a small amount of money stretch a long way.
To me... it means that little moment of hope every week when I check my bank account balance and find myself hoping that this week there will be a bank error in our favour and we will get to collect the $200!
To me... it means praying I can keep the stupid battery in the car going for another two weeks before having to pay for a new one... or that the fuel gauge will be kind for just two more days so I can make it to the end of the week.
To me... it means sacrificing the things I want in order to provide a little bit of happiness for my children, because God knows, they deserve it.
To me... it means not being able to walk into her bedroom first thing in the morning for fear of what I may find.
To me... it means waking up every morning trying to find the strength, courage and determination just to fight on for another day.
To me... it means spending every day fighting to keep her alive, but in the depths of my heart knowing that one day in the future I am going to have to stop that fight.
To me... it means knowing that the day I stop that fight I have to explain to my other children, to my family, to my friends, that we have failed, we cannot win this fight.
And I think that is what bothers me the most. The fact that the odds are stacked so insurmountably in our favour, we are waging war on something that is bigger, badder and stronger than us.
We have fought so long and so hard for everything we have gotten through with her. We have battled through wars that seemed so incredibly impossible... but none have been like this.
None have left me with this echoing feeling of desolate despair in my heart. None have left me feeling so totally, utterly and completely afraid of losing her.
Every time the doctors were negative, I knew better, I knew she would come through, I knew she would be ok. Every time the doctors told me that she wouldn't or couldn't do something, I knew she could prove them wrong. I knew in my heart that my daughter was strong, she was stronger than they believed... but now I see that strength wavering.
It seems to surreal that we have fought so long and so hard, we have kept her alive through so much, only to have to fight yet again.
And this is where those 'opinions' come into play.
The most recent pearler of which is that I just haven't done enough. I could cure her if I wanted to.
All I need to do is to feed her some particular fruit from some particular shrub in a particular area of North Queensland... and apparently the specific compounds within this fruit will just liquify her cancer and she will be cured within 24 hours.
Don't believe it?
How about... would you like some kerosene with that??
No, seriously... All I need to do is give her 20 drops of kerosene a day that has been filtered three times through cotton wool and the cancer will just go away.
So many people have opinions on what I should do, on how I should treat her, on what path we should take...
Yet none of them are facing losing their child.
None of them are the ones who are facing these decisions.
I am the one that lays awake at night, sick with dread, over what the future will hold.
I am the one that goes through night and day feeling like a failure because I can't protect my children.
You might have an opinion on what this is supposed to mean to me, how I am supposed to handle it or what I am supposed to do or say next...
But when all is said and done, I am the one that will be left picking up the pieces.
Posted by Crazy Mamma at 7:58 PM