Latest blog from: hopegoesupanddown.blogspot.com - a record of the hope, terror and unknown future faced when the one you love most in the world suffers a brain injury.
A quick update to start us off; we are finally in the new Korving Towers and, although we had a couple of unsettled weeks, it now feels like home with the extra space making an immediate and positive impact on general sanity levels. The furry idiots are still establishing boundaries with the neighbours' cats and there are some hilarious games of cat chess in the garden often involving some very dramatic growling but very few actual fights!
The NHS review meeting went well and we have been granted a further 3 months funding taking us up to Christmas which will mean an incredible 18 months rehabilitation funding on top of the 8 months in an acute setting; we've definitely had our money's worth from Jake's national insurance contributions! This ties in with a settlement meeting for the civil case in December, so who knows what the New Year will bring; I'm working on the basis that all will be well and that 2014 will be the year when we start to get our lives back on track together with a real sense of what that will look like.
That's all in the future though and this week has been more about looking back. As part of the litigation process Jake and I have to go through endless expert witness sessions. These are deeply unpleasant, often lengthy yet necessary interviews and assessments that force you to face the darkest aspects of what has happened. This is particularly painful for my boy as he is only just becoming aware of how fundamentally his life has changed; we work very hard at adapting to and making the absolute best of our current situation and these meetings cruelly undermine those efforts.
On Thursday afternoon we travelled up to Wimbledon for an expert witness meeting with a Neuro Psychiatrist and it was pretty much the worst one so far. We emerged from his office at 8:45pm dazed, exhausted and laughing with hysteria and incredulity at a truly bizarre and often upsetting 3.5 hour experience. Thankfully our friends Andy & Fiona were there to feed us pizaa and beer and help us to laugh about it.
What this journey to Wimbledon did give us was a great excuse to go back to St George's where Jake worked, where they saved his life (repeatedly) and where he spent the first three months after the accident.
It was a bit weird to be honest. I had imagined it so many times in my head; the triumphant return, the joy, amazement and pride. The reality was a bit of an anticlimax; we arranged to meet the team at 11am but they didn't show up until 11:35am after several calls and pages. I felt dreadful because I realised that this visit was more for my benefit than for Jake's; it was awkward and upsetting and, although it was good to see some of the people that held me together in those early months and for them to see how well Jake is doing, it wasn't such a great experience for him.
What was a good experience for him was meeting up with four of his colleagues in the cafe afterwards. Jake has a range of issues with his memory, including finding it hard to put people, events and places together. This means that when I told him about the people we were going to meet he didn't know who I meant, but the look on his face when they walked into the cafe was absolutely brilliant. "My God, it's YOU!" he declared, beaming from ear to ear. The next hour flew by and I realised that this was the return Jake needed. These people were his friends, they gave context to where we were and allowed him to feel like Jake the radiographer, rather than Jake the brain injured patient.
We will definitely go back, but it will be to see Jake's colleagues and friends and won't be a visit burdened by so much expectation.
Friday night took us to a friend's 50th Birthday party in Jake's hometown which meant catching up with more old friends but also meant, on top of all Thursday and Friday's activity, Jake is completely and utterly exhausted and has been sleeping since yesterday afternoon. I'm not expecting him to emerge from his fatigue laden slumber until tomorrow and the furry idiots are delighted by an opportunity to take advantage of this combination of Jake's warm body and the duvet for a whole day!
You can read more about our journey here: hopegoesupanddown.blogspot.com
Frustration / can't look at screens / fatigue
back to the doctors today at 2pm
Back to the scene of the crime
Brain Injury Back Problem
