May the odds be ever in your favour
Those of you with teenagers will recognise this picture. It's from the film "The Hunger Games", in a very brief nutshell it's about a group of young people who are selected to represent the place they were born to participate in an annual televised show, The Hunger Games, where they fight to survive, the ultimate survivor wins the show. The show is manipulated, like any reality show, to make it more exciting for the audience, who are placing bets on who will live and who will die. This scene is where Katniss, the heroine, who has managed to get away from the rest of the participants in order to keep safe, is forced to flee from safety and change her plans as the show's producers generate huge fireballs to chase her down and back into the action....
And today, I feel like Katniss in this scene. Just as I have reached a place of safety and have a plan for survival I am forced to run and change my plans and my world is turned on it's head yet again. Over and over this keeps happening, like a pawn in some larger game for someone else's amusement - clearly mundane routine, predictability and stability are not in the plan. So I had geared myself up for Daisy's surgery, surgery which will hopefully help with her pain but also give us an indication of why she is in so much pain. A fortnight's worth of childcare for the rest of the family had been planned, commitments moved, parenting rotas worked out ...and then on Friday I had the call, the surgery was cancelled, one of the surgeons who will be operating on Daisy will be out of the country on that day.
Now regular readers will know that optimism is my middle name, I always look on the bright side, I always think there is someone worse off , I am always grateful for what I have got, not what I haven't got, but today, when I had the further news that it is likely that the surgery will be scheduled for the end of November, the day before a big party I have planned to celebrate Andy's 50th birthday, I felt deflated, like someone is having a big laugh at my expense.
But the worst thing is, Daisy is suffering and now she is going to have to wait even longer for the surgery which may (but no guarantees here) help alleviate some of her pain. And in the meantime all we can do is give her ever increasing doses of pain relief and try and keep her distracted. But it's getting harder to find the strength to do all of this, the pyschological dread we all have when her catheter comes out and it needs changing, knowing we have to hold her down as she screams so that we can pass the tube that causes her agony, and despite endless calls to the urology department telling them that she is in agony from her catheters they keep saying that she shouldn't be....
To cope over the years I have built up walls, I don't cry I remain focused, I try not to think of what is happening but sometimes I just have to stand back and ask, is it really acceptable in this day and age that a child has to wait so long for what is supposed to be urgent surgery? That a child has to suffer so much pain and undergo such brutal invasive procedures. But the years are rolling on, this is not the first time our plans have been scuppered, that we have been forced to regroup and revise them....next month it will be 8 years since I was first admitted onto the maternity ward with threatened premature labour, 8 years since we started playing this game of constantly changing plans, shifting goal posts and unexpected curveballs - some of them come from Daisy, and that's fine, we can cope with those, but the out of our control decisions where our lives and our daughter's life depend on consultants communicating with eachother, theatre slots being available, beds being available - these are so difficult to cope with.
How long can we keep playing this game of survival? Daisy relies on us to fight her corner, to provide her care, to do the right thing for her but we keep getting knocked back. It just seems that the more complicated the child the less joined up the communication. And of course we are now throwing another speciality into the mix of puppet masters - neurology are back on the scene. And we know we are going to have to play the game of meeting them, waiting for a so called urgent MRI under anaesthetic, meeting with neurosurgeons, planning surgery - can't we just jump to the bit where she has the surgery and it's planned in conjunction with all the other stuff and we can then get on with celebrating Andy's birthday, then Daisy's birthday, then Christmas.....well yes, but only if you win the lottery. So I guess in the meantime we will continue to be pawns in a bigger game, and like Katniss I'm going to have to rely on my skills and instincts to dodge the fireballs and wild animals and whatever else the producers decide to throw my way to make the game more interesting. It's a game of survival and as they say in the film “Happy Hunger Games! And may the odds be ever in your favour.”
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
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