Sunday, 26 February 2012

Four Korvings and a little bit of magic

Yesterday Father and Sister in Law came to Poole to visit Jake and stay at Korving Towers. For SIL it had been 2.5 weeks and for FIL it had been 4 weeks since last seeing Jake. A lot has happened in that time.

Honestly? I have found the last 4 weeks difficult for a variety of reasons. Jake and I moved to Poole knowing that it didn't matter that we only knew family in the area, we would make a bunch of new friends and in the meantime we had each other...which hasn't really worked out. I knew that lots of people would want to see Jake once he was transferred to Poole and therefore I would have lots of visitors...and then the hospital imposed norovirus induced visiting restrictions. Also during this time Jake has been making slow but extraordinary progress, but I had no-one to validate this for me and, because of my tendency to be overly optimistic, I got the sense that my reports were being received by all quarters with some caution (which is fair enough; I understand the need to protect oneself from setting expectations too high).

So all in all, I have felt a little bit isolated.

I have also been worried about the impact on Jake of only having me to visit him. From what we have been able to glean, he doesn't seem to remember the move to Poole and so to go from having lots of visitors in London to just me must have left him feeling a bit isolated too. On top of that, although I realise that my naturally sparkling personality, together with my amazing comedic talent will have entertained Jake to a degree, it must be a bit boring just seeing my inanely grinning mug for 3-4 hours every day!

A visit from the Woods last week definitely helped (especially the bit in the pub), but they only got to see Jake for 20 minutes and I think it was difficult for them and Jake to adjust in such a short time.

Yesterday's visit has therefore been fantastic for everyone, I was so ridiculously excited about how FIL and SIL would find Jake (whilst also praying that he didn't sleep all through their visit) and the beaming, full dimple smile he gave them when they arrived felt like being given bottled sunshine in a darkened room. It was also amazing to see their reaction as we four Korvings sat together in the day room; a sort of mix of bewilderment, relief, shock and delight as he engaged, communicated and moved his limbs. Magic.

I am very much aware that it has also been difficult for them to leave; each day I experience the dreadful moment of goodbye when Jake looks at me with those large, soulful blue eyes and I have to tear myself away. I am lucky; I get to go back the next day, so it must have been truly difficult for them to leave him last night after more than 3 hours of precious time together, and even harder to get back in the car to head back up the M3 this morning.

I hope though that this trip has shown them that it is not so very far away, that there is much reason to hope and that they, along with anyone else who loves our Jake, have an open invitation to return to Korving Towers at any time. You are not just welcome; we need you!

Sunday, 19 February 2012

Faith in the future

Tomorrow Jake begins his rehabilitation journey. He has been medically stable now for weeks, is safely installed in boot camp, his weekly schedule has been agreed and we have met most of the team. He is also making real progress, but more of that later.

This move  to rehab has made me look back over the past 4 months and it feels like another country, one where we lurched from one overwhelming drama to another and the enormity of what had happened cast a heavy, menacing shadow over every part of our lives. Today I feel bizarrely removed from it all, almost as though I am looking back over footage filmed in another age that doesn't really relate to me.

I know for example, that in the first two weeks my heart was ripped from my chest as we were repeatedly told Jake was unlikely to survive and I felt a terror and pain that cannot be put into words, it was like someone was sandpapering my soul. I also know that over this period I felt frightened, abandoned, angry, lost, cheated, misunderstood, fiercely loved, cared for, supported and protected all at once. It feels now like it happened to someone else; like I have been able to observe and learn from a truly toxic experience without getting any on me! Odd.

Today I feel calm, strong, optimistic, hopeful and purposeful. It's almost as if before the accident my life was viewed through an old analogue TV; today it's a life viewed in high definition. Perspective is forever changed and it is now time to look forward and face a new future.

Don't fret, I'm not in denial and I do realise that we are at the start of what will no doubt be a frustrating, bloody and exhausting journey for us all. But a lesson that I was given some time ago by a lovely lady called Jess but am only just learning, is that you have to look for the good in every situation, you have to actively recognise the things you should be grateful for.

My husband has a severe brain injury, but he is alive. Our life has changed forever and many of the plans we had must be put aside, but we have new opportunities and I know with a certainty I have never felt before that we will make the most of these. We will have a good life; different, but good.

Today Jake continues to demonstrate that you should never write a Korving off. His ability to communicate continues to improve, as does his awareness and wakefulness. He still has the same sense of silliness that made me love him and when he rewards you with one of his full-dimple smiles it is the best feeling in the world. He has started to move his legs a little and his co-ordination is coming along although his fine motor skills are not great at the moment (scratching the right bit of his nose is a challenge sometimes). From the limited communication we have been able to have so far it seems that there may be some issues with past memories, but that's ok, we'll make better new ones. His determination is awe inspiring and I get a childish sense of glee when I see the surprised looks on the medical teams faces.

He is still bed bound, double incontinent, being fed through a tube in his stomach and there is still a Pandora’s box of potential problems to face; but he has already achieved so much more than expected and that's before he benefits from the expertise of the boot camp team.

I married an extraordinary man. I am grateful for that.

Friday, 10 February 2012

Best behaviour and pants

Take a moment to think back to the last time you sat an exam; recall the nervous anxiety flip flopping in your stomach, the clammy hands and dry throat, the alarming realisation that you have one shot to 'pass' and this is it. If you have children, how did it feel on SAT, 11+, GCSE, A level or degree results day? Hold that thought and feeling for a moment.

Under the Rehabilitation Code 2007 Jake is eligible for a dedicated Case Manager, co-funded by the driver's insurance company and our solicitor, even though liability is still not yet agreed. The purpose of this is to make sure that Jake's needs are prioritised ahead of any legal wrangling and we get the right support at the right time.

Today as part of this process Jake and I are having an 'immediate needs assessment' with our Case Manager. Having spoken to her on the phone I know she is lovely. She has been caring and supportive and seems genuinely interested in helping us. Of course, she is co-funded, so she is not a member of Team Korving, rather an impartial observer and contributor, which I must remember!

All in all, today is an opportunity to make sure that Jake is fully supported and given every possible chance for a good outcome.
So why do I feel like we're about to take an exam?! I know this is ridiculous, but I can feel myself obsessing about what I'm going to say and whether Jake will 'perform'.
I must fight the urge to check that my pen works, my pencil is sharpened, that I have a clean eraser and my calculator doesn't need new batteries. I must also fight the bizarre urge I have to make sure I have my best pants on! Madness.
Let's be honest, you don't need to be a psychologist to realise that I am transferring my general anxiety about what has happened onto this afternoon's meeting...I do so hate being such a cliché!
So, assuming you are able to recall that exam time feeling, think of us this afternoon as we are on our best behaviour, whilst wearing our best pants. I'll let you know how we get on. 

Monday, 6 February 2012

Boot camp harmony

And so we wait...again.

That really does seem to have been the overriding theme for this whole situation and my life in general at the moment; waiting.

Jake is safely installed in Poole hospital as we wait for Boot Camp to begin. Boot Camp is the Portland Ward, the rehab unit where Jake will start to follow a structured routine of occupational therapy, speech therapy and physiotherapy. There are breakfast and lunch clubs, activity clubs and even cooking clubs! The Sister of Portland Ward has already warned me that we are likely to fall out and is using words like 'discipline', 'rules' and 'strict' and everything I hear and read about brain injury rehabilitation tells me that Jake and those of us who love and support him may be in for a tough time... boot camp style.

Despite this I can't wait for us to start. Jake becomes more present every day and yesterday he and I were both frustrated and upset by my inability to understand him. In the rare moments he is truly present he is mumbling and whispering and I am desperate to be able to respond, help and understand. I am resorting to a sort of exaggerated mix between charades and 20 questions and Jake (and any member of the medical team who happen to be passing) looks at me like I have gone completely mad. Which of course I have!

We know that the Jake we get back will be different and the longest wait of all is to see to what that difference is, but I am excited by the possibility of what the Boot Camp team can do and am determined to prove to the team that with their experience and my superior communication skills (ahem), we can avoid the predicted fallings out and work together as a harmonious Team Korving. Ha ha.

All this lies ahead of us and for now we must hold steady as we wait for a Boot Camp bed to become available.

In the meantime, can anyone recommend a good communications skills book?!

Wednesday, 1 February 2012

Beside the seaside...beside the sea

We made it!

We broke out of the Tooting Hilton and are back in Poole; Jake in a very swanky side room with views over Poole Harbour (I’m thinking of moving in) and me in our little house with our cat Milo.

For me this makes all the difference in the world; it is easier for me to work, I have all of my things around me and the hospital is a 25 minute stroll away.  That said, I do miss ‘rooming’ with Sister in Law; despite the hideous circumstances, we had a really good laugh and provided each other with a level of support I’m not sure anyone else could have provided.  I feel fairly confident that she won’t miss having to share her hairdryer though!

For Jake it is another step on the journey towards rehabilitation, whatever that will mean for him and us in the long term.  He is currently top of the list for a bed on the Portland Ward, a specialist brain injury rehabilitation unit and having met the Portland team, I am reassured that this will be a very good move.  I say ‘currently top of the list’ because I have been warned that this could change at any time as new cases are regularly put forward and one of them may have a greater need.  As usual, we continue to cross everything and hopefully Jake will be on this next phase of the journey by the end of February.

Yesterday was a bit of a funny day at Boot Camp as Poole Hospital shall now be named. Jake has another infection on board and is therefore very ‘knocked off’ as the professionals call it.  This meant another chest x-ray and his nurse and I went down to radiology with him.  Two of the radiographers kept looking at him funny and finally asked me what he did for a living and where he had qualified.  Yes, you guessed it; they were on the same course as Jake at the University of Hertfordshire.  It felt so wrong that people who were his peers just a few years ago were now the health care professionals working with my broken boy.  This made me very sad.

I also met with the specialist nurse and co-ordinator from the Portland Ward who gave me a sense of what brain injury rehabilitation looks like (more on that in future posts) and asked me lots of questions about Jake and his hobbies, likes, dislikes, personality and background.  This was an odd experience; it is important for me to remember everything that makes Jake the amazing man I married, but this is both uplifting and heart breaking at the same time as we don’t know what Jake’s outcome will be.

So I find myself in a period of reflection; reflecting on the extraordinary talent, commitment and caring of the St George’s team we have said goodbye to and are eternally grateful for; reflecting on how incredibly lucky I have been to have found such a wonderful partner in Jake and reflecting on what the future may look like (I'm reasonably confident it will involve wine). 

Please keep on doing what you do to send your hopes, wishes and prayers our way and remember that there is a spare room waiting if you want to come and see us beside the seaside…beside the sea!