The secret

Shall I let you in on a little secret? They're true; all those clichéd things you hear people say in moments of terror and catastrophe, they're all, in that moment, completely true.

"It felt like being punched in the gut...having my heart ripped out"
"It was the worst moment of my life"
"If I can just get through today..."
"I'd give anything to turn back time" (thank you Cher)
"It felt like a dream"
"I'd swap places with you in a heartbeat"
"How will I go on?"
"This can't be happening to me...there's been some sort of mistake"
"I'll never do anything bad again if you'll just make this ok"
"You've got to laugh, or you'd go mad"
"I love you more than my own life"
"Please don't die today"

Yesterday my young niece briefly went missing. She was fine and having a lovely time being given juice and a biscuit by an elderly neighbour, but when I read about it on my sister's FB page (I know, I'm a bad person and I'm neglecting everyone) and thought about the agonising terror she must have felt, the clichés she must of thought and said and how long that 30 minutes must have seemed, it really made me think about my own experience of the last 6 months and what these clichés, which I assure you everyone thinks / feels / says at these times and are all completely true, say about us.

And do you know what I think they say? I think they are a proof of how adaptable and extraordinary we are when we need to be. I think they say and show how resilient the human spirit is, how strong we can be when we don't think we can go on any further and how, when we truly love, we love fiercely and without boundaries.

So this is what I have learned about these clichés and it's not really a secret, it's just that not everybody discovers their truth. I'm very glad about that.

Have a lovely terror / catastrophe free week.

Delays, disappointment and decisions

Well, its’ been another eventful week, the key themes being; delays, disappointment and Big Decisions.

The delays are legal and of the kind that make you want to spit; ‘that woman’ didn’t bother to respond to the summons with a plea so, in their infinite wisdom, the magistrates decided to give her an extension to the 30^th April.  Thanks for that, oh no, please don’t worry about the victim and his family whose lives are on hold until this is resolved! 

Three things could happen now; she pleads guilty and gets her points and fine which means we can move forward with the civil case; she still doesn’t bother to plea which means they will ‘find in her absence’ (hopefully the same outcome as the first option); or she pleads not guilty and a further date is scheduled for a full hearing “sometime later in the year”.  It’s no real surprise that I’m going slightly bonkers, but more on that later.

The disappointment is to do with Jake’s home visits last weekend.  Saturday’s visit went well; the specialist taxi driver we have hooked up with is lovely and Sister in Law and Jake’s best friend Mike and his squeeze Danielle were there to support.  Jake was a bit overwhelmed at first, but seemed to settle really well and we had high hopes for his next visit home on Bank Holiday Monday.  Much of this hope centred around Jake’s new wheelchair which is a standard, self-propelling, light wheelchair as opposed to the huge attendant assisted armchair he has previously used.  I had visions of him happily wheeling himself around Korving Towers reacquainting himself with our home and all his stuff (which is daft in itself because he is much more likely to stay in one room as he gets very overawed by change, but I have a VERY active imagination).  Hope can be a bit of a bugger though and, literally just before he was hoisted into his wheelchair, Jake had his first seizure for over two months, a proper one. 

I have never had a seizure, but I am reliably informed that they are completely exhausting and when you put this together with the extreme fatigue Jake suffers as a result of his injury, you can imagine how wiped out he was.  Also take a moment to imagine how relieved I was that it had happened then and not in the taxi or at Korving Towers. All this is disappointing on two levels; one because we were all, especially Jake, looking forward to his visit (and boy did he let me know he thought I was somehow behind the cancellation!) and second because we really thought that his epilepsy was under control.  Ho hum.  He is fine now and due to visit home again this weekend so I am relying on hope to cut us some slack.

All this, on top of all the crap I reported in last week’s blog has led me to having ‘a bit of a wobble’ and has compelled me to make a Big Decision. 

Currently my life is a frantic jumble of priorities; I work 5 hours a day, but it’s not one of those jobs where you can just switch off when you finish; I spend as much time as possible at the hospital supporting Jake’s rehab, but all too often am not available to be in therapy sessions; I am neglecting friends and family except those who physically come to me (even then I keep double booking and forgetting commitments); and I am most definitely not on top of things at Korving Towers, which is a bit like a B&B most weekends…only with friends as guests and added wine.  Add to this the anxiety and stress related to having your whole life and future upended and I am reaching critical mass!  Fundamentally I am trying to do too much and therefore doing none of it well. So I have decided I need to take an unpaid sabbatical from work and fortunately I work for a massively supportive organisation who are happy to facilitate this.  From the 1^st June I will be able to completely focus on my Jake and me; a decision which has made me feel almost human again.

At this point I would like to pre-empt the inevitable clever comments about how this spookily and conveniently coincides with the start of summer.  You’re right, it does.

Break out the emergency chocolate

You know when you've been looking forward to a film for ages, read the glowing reviews, heard from friends that it's amazing and finally get round to seeing it only to discover it’s a dud? Well that's how I feel about this week.

This week promised so much; initial court decision and Jake's first home visit both offering much hope.

Don't panic, there is no actual bad news, just a lack of good news and a truly bobbins conversation.

Still no news from the court team. Apparently it can take four days for them to upload the outcome on 'the system' (computer says no) and so, despite either a penalty or court date now decided, we are none the wiser. This holds everything up and it starts to feel like some sort of deliberate torture.

With regards to Jake's visit; he was due to be picked up from the hospital at 2:30pm and be taken back at 3:45pm. This would mean approximately 1 hour at home. Of course the taxi didn't turn up until nearly 3pm, so we only had 35 minutes which made it feel very rushed and unsatisfactory as, due to the nature of his injury, Jake is very easily overwhelmed which makes him withdrawn and sleepy. Great.

The taxi and Occupational Therapist went off at 3:45pm as billed, leaving Jake's key worker behind so we could talk about the practical stuff needed to get Jake home more regularly and for longer periods. She chose this moment to share her widely pessimistic view of Jake's potential recovery (he'll never do this, that and the other) and fun things like the fact my beautiful house probably won’t be adequate for Jake, something that is normally done in a balanced conversation with the whole rehab team at a formal review meeting, led by the consultant and when I have had time to prepare and usually have Sister in Law on hand to support. She then left me. On my own.

Yes, I fell apart (I've got eczema under my right eye from crying so much - attractive). No, it won't finish me off. Yes, I am now embracing that helpful emotion, anger. No, I'm not planning on actually hurting anyone...yet.

So, it is Wednesday morning and this week has already failed to live up to expectations. I have been about as effective as a teapot from a work perspective today and am sincerely hoping that tomorrow brings better news and I will start again then.

Fortunately Jake's Mum sent chocolate, so it's not all bad.

Guilt, hope and revenge!

OK, so I'm just going to confess before writing anything else. Yesterday I went home and left the side of Jake's bed down. Jake is desperate to escape. Put these two things together and what do you get? Jake stranded on the floor having banged his face.

Think you've experienced guilt? You have NO idea. I spent last night wide awake waiting for the call to tell me that he'd had another bleed etc. I called the hospital at 11pm and again at 7am and he is, of course, absolutely fine.

In fact, when I hot footed it back to Boot Camp last night with my heart in mouth to see what I'd done, I asked Jake where he hurt and he pointed to his stomach...turns out he was hungry because they'd delayed his feed until they knew he was ok!

My job is fundamentally about creating lasting behavioural change through creating internalised emotional connections to the need to change by making it personal. I'm thinking I've probably internalised the need to make sure I always put the side of the bed up before I leave! No additional coaching needed here.

In other news, the environmental visit went well, particularly as I'm a sucker for a compliment and the Occupational Therapist thinks we have a 'really lovely house...it’s perfect'...preen, preen (that'll be my high significance driver - I can hear my colleagues guffawing!).

This means that Jake will be coming home for the first time on Tuesday, accompanied by the OT and his keyworker Jackie, who is a specialist nurse and a truly lovely lady. Then, assuming that goes well, over the Easter weekend I will be bringing him home on my own twice. Excited? Hopeful? Anxious? Bricking it? Oh yeah!

I say he's coming home for the first time because Jake has no memory of our new home. Nada, nowt, shag all in fact. Weird. Cue frantic decorating, cleaning and tidying; I know, I'm an idiot, I just can't help myself.

In even further news, a magistrate will be considering Jake's case on Monday. If 'that woman' pleads guilty by post it should all be resolved on Monday and we can move forward with the civil case. If she pleads not guilty then a further court date will be set that all parties and our star eye witness will be called to. On the one hand I'd quite like it all to be wrapped up on Monday, on the other I'd quite like to get the opportunity to sit in the same room as her and throw hard back copies of the Highway Code at her head and paper her car with pictures of Jake in intensive care. I know that this is not the adult thing to do and that it will attract negative energy and all that sort of gubbins, but...yada yada yada...she broke my Jake and we will make her pay mwahahahaha!!!!

So, next week is a big week, therefore next week's blog is likely to be a long one. You have been warned!

Wish me luck

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!

Embracing denial

*WARNING there is a shockingly awful gag at the end of this blog*

So, yesterday was the review meeting with the Boot Camp team where we met with representatives of Occupational Therapy, Physiotherapy, Speech & Language Therapy, specialist Dr's and nurses and the Consultant. The purpose of this meeting was for them to share with Sister in Law and I what has happened, what they are planning and what they are aiming for in terms of goals for Jake.

Needless to say, this was not the easiest way to spend an afternoon and I am glad that Jake is not aware of some of things we discussed; it is tough enough for those of us that love him.

The headlines are that Jake is both dyspraxic, which is related to thinking and doing and dysphasic, which is related to language. What this means is that he can make automatic movements, but not planned ones (which makes rehab very challenging as he freezes when he is asked to do something). When he finds words he still makes no sound and they are often the wrong ones (expressive dysphasia) and they are concerned that he has limited understanding of what is being said to him (receptive dysphasia). His processing of information is very delayed and they are being very cautious in their assessment of what he will achieve physically. Currently he is unable to consistently swallow and so is still very much dependant on his feeding tube.

There are lots of other elements to Jake's issues, but those are the biggies. Gutted.

And then, and then...we go and sit with Jake...

Now, at this point I think it would be useful to share something from that previously referred to, fun read 'Head Injury; A Practical Guide'. Apparently there is a model to describe the 'stages of the family's emotional reaction'. Of course there is.

Stage 1; shock, panic, denial 'Please God, let him live'

Stage 2; relief, elation, denial 'He's going to be fine'
Stage 3; hope 'He's still making progress, but it's slow'
Stage 4; realization; anger, depression, mourning 'He's not going to get back to his old self'
Stage 5; acceptance; recognition 'Our lives are now very different'

The thing is I think I'm stuck at stage 3. I have definitely experienced the emotions of stages 4 and 5 and yet I keep heading back to hope.

Anyway, back to yesterday...and then we go and sit with Jake; and it's like we were talking about a different person in the review meeting. He was so alert and engaged. SIL has bought him an ipad and they had a basic, silent, but perfectly reasonable exchange about it (we're getting very good at lip reading) and then spent some time playing with it together. I'm not suggesting he picked it up and starting using it, but he was following everything SIL did and was able to scroll down the screen.

So both SIL and I came away with the view that Jake has not yet decided to invest his effort in the Boot Camp team to the degree he does with us and, with the determination he shows us every day, will continue to exceed their expectations.

Essentially I have decided to reserve judgement (which is code for 'ignore') big chunks of what they said because I don't think they've got the measure of my Jake yet...either that or I'm actually stuck at stage 2, which is fine because I hear Egyptian cruises are quite nice :o)

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 it...in 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?