Wednesday, 7 March 2012

Uncharted waters

Without question we are in a much better place than we had dared hope to be based on the early views of the harbingers of doom and general pessimism that surrounded Jake for the first weeks and months after his accident.

Don't get me wrong, our lives are forever changed and Jake has been dealt a shitty hand, but we are no longer facing the ultimate chicken lickin scenario and there is real hope that one day Jake will come home, albeit in an unknown condition at this stage.  Jake's closest friend very recently lost someone important to him and his family to an accidental brain injury, so we count our blessings daily and send them our love.

It's funny, but where we are now is almost more scary than that truly unknown land we were in before, where there was so much wrong with Jake that you couldn't see the wood for the trees.  As we get to see more of Jake and therefore the wood, the challenges ahead come into sharper focus.  The Boot Camp team are now fairly confident that Jake has both dyspraxia and dysphasia and both these conditions, particularly the dyspraxia, will be long term and undoubtedly tough for Jake to live with. His memory is not great with big chunks of our life together missing; my teenage nephews, who have had Jake in their life for the past 5 years, visited at the weekend (along with the cat, which was hilarious) and he doesn't remember them at all.  He also doesn't remember our wedding, but I figure this could be a positive as we would need to recreate New York!

We are also seeing the incredibly inspiring strength and determination that makes Jake the frankly awesome human being he is.  He has no physical strength in his legs or trunk, his body refuses to obey him (dyspraxia) and his co-ordination is decidedly hit and miss and yet, despite all this, everyday he tries to lift himself out of his wheelchair.  He whispers 'stand' constantly and grips the arms of his chair with grim determination, forcing his unwilling body forward.  Obviously he doesn't succeed, but seeing this unbound will gives me a rush of pride and hope.

The not knowing is difficult but Sister in Law and I have the first multi-disciplinary team meeting tomorrow afternoon with the full Boot Camp crew who will, for the first time, start to talk about what Jake may be able to achieve, which is exciting but terrifying as we sail these uncharted waters.  I'm sure we will fulfil our usual roles in this meeting; SIL taking responsibility for being professional, calm and asking great questions whilst I take care of the wide eyed staring in shock, the nervous cracking of inappropriate gags and occasional blubbing.  I think it's important to agree roles and responsibilities in advance, don't you?

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