Moving on up

Jake and I have just returned from a weekend of luxury and relaxation at a local spa hotel.  It was fabulously indulgent, the staff were incredible and I can honestly say that a change of environment and a removal of stress has left us both feeling more relaxed than in a very, very long time.  So much so that we've booked to go again in June!

We arrived home this morning to the icing on the cake; a message to say that our offer has been accepted on a new house.

The current Korving Towers was the perfect forever home when we moved here in August 2011; it is small but perfectly formed and had everything we needed; a big bedroom, office, two reception rooms, a lovely new kitchen, sunny south-west facing garden, a massive garage for the imp of doom, really close to my sister and her family in a good area on a quiet road and close to local amenities (and a nice pub!).  If things had gone to plan I can honestly say we would have stayed here until they carried us off.

Sadly things haven't gone to plan and since Jake came home it has become increasingly obvious that the current KT is just too small.  I am finding this particularly difficult as I literally have nowhere to go; I work from home and so for most of the day you can find me, Jake and a carer bumping into each other.  Add to that the various therapists and related visitors and the house suddenly feels very small indeed.  Jake's supported and carefully managed morning routine means that access to our bedroom and one bathroom is restricted until at least 10:00am and his need to rest regularly means that sometimes I have little or no choice as to where I go in my own home.

In fact I often find myself still in my PJ's at 10:30am with the door to our room closed as Jake has gone back to sleep!

The journey to finding a new property has been tricky as we have needed to balance getting a property that reflects our original needs, the new needs our situation adds and a budget that both sides can accept.  The new Korving Towers feels perfect; with much more space, in an area we are happy to live in and still within a reasonable distance from my sister (and therefore the wine!).

There was a near miss that was judged as 'over provision' by the other side (easy for them to say, it's not going to be their home!), which has led to us being in the crappy position of having to go to court for the interim payment we'll need to purchase a new property.  All I can do is trust that our legal team will manage this side of things for us and hopefully we'll be in the new Korving Towers before the end of the Summer.

Grief

I don’t know why, but after 555 days suddenly I can’t breathe.  I feel smothered by anger, sadness, confusion, responsibility and fatigue.

All I can think about is what is lost; all the experiences we were going to share, the pride I know I would have felt watching him be an endlessly amazing father and radiographer, the chance to be a mother, my career, my social life, my future.

I spend all my time trying not to show Jake how broken I feel, crying when he’s not there and closing myself off pretending to be strong, positive and cheerful when he is.  He’s got a brain injury, but he’s not stupid; he knows.

I’m sitting here now on the sofa in the lounge with hot tears splashing on my laptop, trying to bring myself back under control before I climb into bed with my Jake. 

I know this is grief, I know this is normal and necessary, I know it will pass.

But it hurts, in a way I can’t even begin to explain.  I am burning at the centre of my soul and I want to close my eyes and sleep forever so I don’t have to feel it anymore.

But then my beautiful man would be all alone and that would be so much worse.

So tomorrow is day 556 and I will get up and start again.  Because I know this is grief and I know it will pass.

Remember this

Our wedding in New York

Our honeymoon in California

Our beautiful new home

Our roles

Our rules

Our plans

Our secrets

Your degree

Your second career

Your colleagues

Your words

Your age

Your triumphs, trials, decisions and set-backs

My flaws

My quirks

My fears

My dreams

...my name

These memories may be lost to you my love, but they are just moments in time and I promise you we will make more.

So, if you remember nothing else remember this; my name doesn't matter because I will love you every day, forever; you are truly amazing and we have literally millions of new moments ahead together with which to make new, wonderful memories.

Lets start today.

A plea to the professionals

I don't want this post to be misunderstood, so I'd like to start by stating my intent; I genuinely believe that anyone who chooses to work in a field where there are such extraordinary personal and emotional stakes does so because they are fundamentally good people who want to do the right thing.  The majority of our journey has been characterised by the provision of exceptional care, empathy, thoughtfulness and professionalism by these people...some of it has not. 

The sad thing is that it is the little things that are overlooked, not considered or ignored that often have the most devastating impact and, I suspect, often without the offender being aware of this impact.  That is what this post is about and it is intended as a positive call to action.  So please read it in that context.

Cutting to the chase, YOUR PROCESS IS RUINING MY LIFE!

Jake and I are just two people, we're not particularly exceptional for anything apart from what happened at 7:25am on the 26th October 2011.  We don't have access to limitless resources or medical knowledge; we're just doing what we can in a truly shitty situation.

Thankfully we are optimists and so are both attempting to make the best of it.  This is difficult to sustain though when each corner we turn seems to lead us to a big, ugly and unresponsive process.

When your world has shifted so fundamentally that you are having to re imagine every plan, expectation and dream, the thoughtless proclamations of 'that's the process', 'it's not our policy', 'we have to wait for A to talk to B, who needs to check with C who is on holiday for the next 2 weeks', 'that's not in the guidance' or (a personal favourite), 'that's not my job' are breathtakingly stupid and unhelpful.

Before you go all indignant and defensive on me, I know that these are the facts of your job and probably true in that context, but do you really have to say it that way? Could you choose to look around the process and see the broken person behind it? Could you take the time to really listen and then explain why the process is there, how it will benefit me and what you are going to do to make my experience of the process a bit less painful?

Take a moment to consider where the process came from, who did 'they' have in mind when they designed it?  I'm guessing it was originally meant to help people like us, not defeat us.  If not, why not?

So, a simple plea; next time you're about to take out your process and brandish in the face of someone who is potentially crumbling under the pressure and terror of their situation, please think about why you do what you do, the way you are about to communicate and the impact you're about to have.

Thank you from me and my Jake for reading; we'll keep trying if you will.