It is 3:30am and I am failing miserably at the job of sleeping as my mind is a jumble of worries and the unknown, so I thought I'd better use the time to blog. There's been a bit of a word drought recently, so I apologise if you've been waiting for news.
The last couple of weeks have seen lots of visitors (which has been lovely), the slow rumbling of legal wheels beginning to turn (which I can't really go into yet, but promise to share soon), some small but real progress in Jake's rehab, a return to some of the terror of the old days and the coming home of some stark realities; basically it's been a bit like having a bottle of concentrated brain injury recovery...and forgetting to dilute it!
The terror came in the form of a really nasty infection which saw Jake go from fine to seriously ill in a matter of hours with a temperature of 39.8, a very low blood pressure and a worryingly high heart rate. Just like the 'good 'ole days'! The Boot Camp medical team were amazing and he is fine again now. It was truly bizarre how quickly we slipped back into the same sensations and emotions repeatedly experienced in our Tooting Hilton days; like we'd been shoved in a time machine and made to re-live old horrors that time was supposed to help us forget. Oh, if only we had a time machine.
But what of Jake's progress? Never giving up, he continues to struggle with communication. He is now occasionally finding the sounds to go with his words, but this presents its own challenge as his expressive dysphasia means that often these words make no sense. I cannot imagine how frustrating this is for him; as far as he is concerned he has communicated completely clearly (which takes real effort on his part) and we still look at him with confusion as we make feeble attempts to decipher what he has said.
Physically he continues to make slow progress, but this is hampered by his dyspraxia and requires a Herculean effort and determination. He is aware that the Boot Camp team doubt whether he will walk again and, when he is present enough to understand this, is resolute in his belief that he will. Yesterday he astounded not just those of us visiting him, but also his keyworker when he not only pushed himself forward in his wheelchair, but also managed to slowly reposition himself so he was facing in the right direction to get through a door. From the look on her face this was clearly beyond what they expected him to be capable of. Good.
Yesterday was also a day for coming down to Earth with a bump. Whilst Jake has been in hospital I have been repeating to myself and anyone who will listen (or is daft enough to read this blog) that 'there is a long journey ahead'...'it is very early days'...'we don't know what Jake's outcome will be' etc. all lovely and vague. And then yesterday I had a conversation with Jake's keyworker about the future. Not the long term, slightly indistinct and a long way away future, but the immediate, in the next couple of weeks future. Next week the Boot Camp team are coming to Korving Towers to do an 'environmental visit'. This means that they will assess our home to understand what is needed to make it possible for Jake to start coming home, initially for a couple of hours, on Saturdays and Sundays. They will also assess the possibility of installing a hospital bed and hoist so that he can come home for a full day and be able to rest in the afternoon.
Viewed from a distance these are exciting plans; viewed up close they are very real, very scary and very big.
You see I'm not ready. I thought he would be much better before we started to talk about home visits. I have become reliant on the support and capability of the wonderful nurses who are always there to help out. I'm scared I won't be able to do it. It's forcing me to look at the very real possibility that he will stay dependant which he will fight, resent and hate.
I am frightened. I want to make it all go away and be back in my home with my Jake and our plans, blissfully ignorant of our current reality.
But that can't be. So I will continue to keep on keeping on, one day at a time and trust that Jake and I were absolutely meant to be together, whatever life has planned for us. To my friends and family I continue to be eternally grateful for your time, support, patience and understanding (I'm not the best 'me' at the moment).
So this is why I am awake at 3:30am trying to quell the storm of my imagination.
John Lennon once said 'reality leaves a lot to the imagination'. Well I am going to try and deal with the reality I have in front of me right now, not look up too often and try and keep my imagination in check. Wish me luck!