Saturday, 12 October 2013

Dear Alex, Bottle it up and carry on...

Dear Alex,

Shouting continues downstairs, as it has done all day today. You began at 6am, and it's 8pm, and you still go on.

I ask the carer to give us a few hours family time-see if that helps, knowing you feel (as do I ) a presence always in the house. Only you become worse, my bruised arm with your finger grips where Lola ran over to try and prize your hand off throb still...I had to leave you in your bedroom for a while, as I couldn't calm down, heart broken tears of distress and weariness pour, and nor could you, I had spent ages cooking for everyone- roast gammon, potatoes, veg and salad. We'd made meringues together this morning to have with strawberries and cream for pudding...It was a waste, you cried your way and shouted and swore at me throughout...

...These dark days, where you lash out, you are so lost to the real world, you are so damaged. Are my moments that bleed me dry. I want to scream at you 'Look what this is for me, I do everything for you, I am there for you, living, breathing you 24 hours a day, 7 days a week, and have done for over 2 years...You never give me anything, we don't live like a normal young married couple, you can't even parent with me...I bring up our four kids on my own, and you make things even harder'...I want to carry on screaming till I can scream it out loud and you I want you to hear and cuddle me and say you understand and you are sorry and it will be different...But you can't, and it makes me just want to shake you, the you in front of me and scream 'where's Alex? My Alex? The one you took from me...?'

Instead I cry, bottle it all up, as I help you with your dinner-mine goes cold in the kitchen- and as you shout accusingly 'What the f*** is wrong with you?' And I, through streaming tears whilst the kids watch on, say nothing, 'I am just sad', I relent...You wouldn't understand, you can't. There's no point pretending you could.

There's no you to comfort me.

I snap at the kids to sit properly, not moan about the dinner I made for them all...I am on the brink of screaming, running away, saying 'who the *&^( lives like this? Who else would do this?'

But I wouldn't, I couldn't.

And still there's no you to comfort me.

me xxxxxxxxxxxxxx

Friday, 11 October 2013

Dear Alex, Left leg progress...Incredible!

Amongst some dark moments, there are my magical, beautiful moments- Here is one of them...Alex woke up this morning being able (from NO movement whatsoever) to do this:

Wednesday, 9 October 2013

Dear Alex, Today I needed you...

Dear Alex,

Window open, I hear the wind, strong, the darkness outside and I can hear the sea tonight, the wind must be in the right direction.

I have just got the kids to bed, and didn't read tonight with them, so I sit here with guilt weighing upon me. I was too low. Eyes too tired, head spinning too much, I needed to shut myself away in the room I do not share with you upstairs and write to my imaginary you, my you who used to be sat there next to me, to comfort, console and care. The imaginary you I write to now, although I will never pass these letters on to you, because you are gone, that you is gone...eons ago it feels.

The Care agency currently providing your care, pulled out this morning, giving two weeks' notice. I, and the CCG, (your mum too is trying what she can too) now have to frantically find a Care agency who can fulfil the role of providing care for you. I imagine there were several reasons, but their pulling out makes me question me, and I become very down on myself. That is until I speak to one of your Care commissioning nurses. Who reassures me she would be just the same, and I should not change. I insist that care is given alongside aiding you, not care given, doing everything for you, all the time. I am present, I encourage, advise and correct a great deal, but that's because I have extremely high expectations and standards and values for you...And this is all about you. So after being winded by the news just after the school run, I sit for a while, ponder how I am and then look at why, and ask myself should I, or would I change? ...

...And no, no I will not, because I am caring and providing for my family-you and the four children-and what I do for you, and all the idiosyncrasies of you as a person, how to be with you, encourage you and get the best out of you, is paramount, as it should be. I am on the hunt for another agency now- no small feat.

In amongst this, I am still trying to do speech therapy with you, physio with you, cook for you, clean up eternally after you, not just you, but the four kids too. Four sets of homework, four sets of reading, four sets of letters from school that need addressing, four bedtimes...And then our dog, who had to be taken in again today to the vets (third time in a week) as he has an eye abscess and it needed operating on!


Today I needed you with my whole being, to take something off my hands, or to just give me a cuddle, or even to ask 'are you alright, babes?'

How I ache for you to care about me.

Long to hear you ask if I am ok, or how my day has been...

Crave your eyes to see me and your arms to reach out to me.


Today I needed you.

More than normal, all day I cried, tears would well and spill over, with no control.

Because today I needed you.

me xxxxxxxxxxx

Tuesday, 8 October 2013

Dear Alex, A Stranger...

Dear Alex,

Grey skies, drizzly day, only here, here I don;t mind it at all, I still feel the openness of living by the sea. This morning's walk to school, very different from yesterday's, as I smile, the kids chatter, I walk with my friend and her two kids, as we have done each school day since the beginning of term. How blessed I am that my neighbour has become a friend, a dog walk partner and the school runs are done with her and her beautiful kids, same ages as Mitzi and Esmie.

Sunday night, after the beach, something triggered, and I lost you, you found it difficult to get to sleep- it is as though your brain is no longer able to switch itself off to sleep, and I cannot work out why. The following morning, with a 5am start, I try for a couple of hours to quiet and calm you, anxious you do not wake the kids with your noise and cries. Then most of Monday until your parents arrive at 2pm, you cry and become frustrated and angry. I knew it was a day I would not be able to get through to you, there are days such as this, it was not your cry when you are confused and upset, genuinely upset by your awareness, it is the cry I her all to often of a man I do not know- a stranger, a person I look after but cannot console or get through to, thus I walk to school, head bowed, lola clinging on to me, in tears, trying to 'pull myself together'.

And then today, you are a breeze, you are calm, fun, jovial, tears, just a lovely, calm you. Now you sleep, the kids finally do too, and so I type.

I type my thoughts, my full mind and my tired eyes out on screen. To help me, to record all of this, each day as a record for one day when you are maybe recovered enough to want to know where these years went.

Printer churns out a calendar, where I will mark down everything, from your sleep, to your diet, your habits, your moods, what we did and when, to see if I can make some sense out of the times I 'lose' you. See if there are triggers...Hoping to discover and understand this new you, and whether there are things I can do to avoid the awful times that make my heart stop beating life, it beats through palpitations and ache and stress.

There appointments everyday, whether it be Physio, nurses, OT, wheel chair adjustments, medication reviews, speech therapy, there are so may things to achieve in a day with you home.

Today, my angel, today was a good day.

I will hold on tight to today, as I learn to take each day, each hour even, as it comes. Being glad in the moment, grateful for all and repeat like running water through my soul and conscious mind, my blessings and beautiful things, today is one...

Sleep well, sleep thoroughly, sleep long...

me xxxxxxxxx

Sunday, 6 October 2013

Dear Alex, Open...

Two years ago today, you were stretchered into A and E by the Firefighters I came across outside the Hospital, it was today you were diagnosed with your blood clot...

And here we are today..You were so open, so relaxed, I could feel your soul relaxed and invigorated...

It was our first time altogether on the beach in over two years...

We couldn't have done it without the help of our amazing new friends and neighbours!

You were handed an eel! You had a '99 with a flake! You smiled and had your eyes open constantly. It was an incredible day...The first of many the same, the first full healing day for us all.

Here are some of the photos...