Friday, 5 October 2012

S.O.S Number 2- THIS WILL NOT HAPPEN AS LONG AS I LIVE AND BREATHE!

What I would really like to know is what about the people who DO NOT get heard? Who do NOT have a voice, the chance or the access to being heard?

Let me explain,

Yet again, I found out something else shockingly catastrophic to Alex's recovery this week.

For those unfamiliar with how the system works, this is how Alex is assessed for future care.

The Centre he is in at the moment put in their recommendation to the 'Continuing Care team', which in Alex's case is further re-education which is crucial if Alex is to regain physical strength, faculties etc.

This is NHS funded if he qualifies, which he did, for it, if need is assessed as great enough. if not it is means tested, but in this case he qualifies for NHS treatment.

I heard that the continuing healthcare which Alex qualifies for (rigorously tested, filling out a 54 page extremely intricate and complicated review, a meeting with the person who presents his case to the Continuing care board, accompanied by oodles, months worth of paper work justifying the answers to the questions in the assessment FYI) is refusing to fund anything more than a Care home for Alex.

This decision means Alex is 'stuck' in the centre he is in at the moment, as he can't come home- I do not have a home he could live in, so is therefore effectively homeless. The therapies in the Centre he is currently in will be significantly reduced because his official discharge date has been passed (3rd October).

The NHS will not fund further 'fast track' rehabilitation for Alex!

This time, however, they are not going to know what has hit them. I WILL not stop until Alex is not written off, a statistic they will not fund because of basic funding issues.

Alex has the right to a future, to support and care and therapy. He has a right to be given the chance to recover.

A father of 4 young kids is being written of at the age of 33, THIS WILL NOT HAPPEN as long as I live and breathe.

It's a breach of human rights to deny him this.

If I have to chain myself to the doors of the Powers-that-be who decide Alex's future for him, I WILL! And I'll bring the kids too...And anyone else who will join me!

I have a voice, through here, through the blogging community. But mine is not a unique case, how many more are out there being denied a future? How often is this happening? Who is there to hear them? I am determined, somehow, this will change. Where do I start? I don't know, but I will damn well find out and give people a voice!!!

  

Recent developments have attracted again the force of the blogging community, amongst others, to come together...Babyhuddle.com To see more of how people are getting behind this.

I am off to polish my chains ready for 'chaining myself to the door for Alex' amongst a few other things I'd like to do before I am 35...!

THANK YOU for listening, THANK YOU for your support, THANK YOU for re-posting, tweeting, sharing...

And don't forget to go to Alex's website to find out more: http://makingwavesforalex.co.uk/http://makingwavesforalex.co.uk/


Thursday, 4 October 2012

Dear Alex, Three hundred and sixty five days...








4th October 2012

Dear Alex,

Three hundred and sixty five days ago you came in from rugby training, at exactly this time, 10 pm, neither of us knowing what was wrong, neither of us knowing how life would at that point in time change irreparably.

Three hundred and sixty five days ago, I nursed you through the night, neither of us slept, tossing and turning, uncontrollable head pain, vomiting…

Three hundred and sixty six days ago was the last time I slept in your arms, in the same bed as you, in the same house, as a family under one roof.

And for three hundred and sixty five days I have yearned for you, known the pain of longing for something you cannot have. Known the powerlessness of struggling against a system, trying to be heard, trying to get you the right therapy for you to be given the best chance to recover as far as possible.

Three hundred and sixty five days of fighting, of loving like I never have, of rising up and challenging my tendencies to want to hide under a stone (or rock in a corner!) and channel that into the energy to find my voice, fight for you, mother our kids in a way that will guide them, teach them how to cope in life, to be heard and not shrink back and hide when things get tough. To rise up and accept the challenge of life, no matter what it is, and drag yourself through by the skin of the teeth at times, get it wrong, often, but forever trusting and being grateful, acknowledging our blessings and the wonder of ALL that we have, no matter how big or small. Having faith in the Most High, drawing on Him for strength, believing in the power of prayer, energy, love.

For three hundred and sixty five days I have written everyday to you (sorry!).

And where am I today? Well, I have found a confidence in myself I never had. A knowledge that all I can do is try, keep trying and don’t quit, ever! I have gasped, I have cried, I have sobbed, called out. I have begged God, I have been numb at times, I have been OK at others. I have snapped but always bounced back, buoyed by the love of those surrounding, whether they be strangers, neighbours or far away. .

I feel more settled these days, less strewn everywhere. The routine of school, the quality time with the kids. Watching them learn to read, discovering the world. And being the utmost that I can be to them. They see my weaknesses, my faults, they see me cry. But I hope they have seen me endure, persist and challenge myself, never letting myself ‘baisse les bras’ as they say in French, literally translated as ‘putting your arms down’ which I like, it means not giving up, but the thought of having my arms up and not letting them fall to my side, I like.

I have been swept along by overwhelming support, the caring of others and the energy of other people. This has lifted at times when I have needed it.

I find, now, today, reflecting on a year of you not being here, that I want to be useful somehow. I am the first to say to the kids ‘serve others, then yourself’. I feel I am looking out for you, them, us as a family and fighting to get all that you need. But what about the people who don’t have the energy to fight? Who don’t have the support? What about the people who are fobbed off by the system, who get lost in automated messages, who have no one to support them?

People’s support and strength they have offered me has been inspiring.

So, where am I today? Waiting. Walking. Accepting. Often, still, lonelier than I could ever have imagined, scared without you, lost. But I have learned the joy of counting and naming my blessings, everyday. I have learned to appreciate all things, and when I feel the despair, the pain, I turn my attention to thanking the Most High for something that is good too.

For three hundred and sixty five days I have watched you, willed you on, determinedly refusing to lose the hope that I will always follow.

I have seen miracles; you are still here! And progress beyond anything anyone ever predicted.

I am overwhelmed with how much the love between us spurs you on, and me.

I am the luckiest girl in the world, Alex Wood, that you picked me!

We’re never giving up, we’ll be back in the same bed one day…and when we are, nothing will ever, ever have felt so incredible…

That day will come, my angel.


Me xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Tuesday, 2 October 2012

An Interview with Tamsyn Wood

The 'bloggosphere' may sound like another made up universe my 4-year-old might have come up with in the bath high on matey bubble bath, not to those who blog it wont, but those who don't, let me explain a bit, a really tiny bit.

When my benefits were cut off, and I had to shout long and loud and lots, the people who joined in were my blog friends, it's a community out there that unless you are a part of, is very difficult to explain! There is such a force behind it, such support and it was through my blog friends getting behind me, that I was heard and it got as far as the BBC Oxford news.

The power behind the rising forces of fellow-bloggers, parents, was like nothing I have ever witnessed, it took off and got me what I needed, a voice and to be heard.

As a result of this there has been interest in the rest of my story, not just the S.O.S benefits crisis.

BABYHUDDLE.com took the time to come and meet me, were kind enough to let me ramble for what must have felt like hours to them! And then cleverly edit the majority of waffle, and create the interview I have put a link to here:




I want to say here a HUGE thank you to them, as I know the effort that has gone into this, I am so touched by what they want to do aswell, and as we all saw in my S.O.S post and getting heard, Alex's story to be shread regularly and farther afield, means you would be giving him the chance of getting the funding he needs for making progress...

Please take a moment to read this link on BABYHUDDLE, and watch the video too, and please.please share in anyway you can...THANK YOU.

Monday, 1 October 2012

Dear Alex, Time Heals?




1st October 2012

Dear Alex,

I feel like I am lying in wait at the moment. It’s silly to hinge things on dates; but it’s almost as though I can give myself permission to feel the utter devastation of what has happened and how much I long for you…

Time just ebbs away, flowing into memories, fading heartache. But the sting and the pain I feel doesn’t fade actually. Time doesn’t heal, I think I just get better and more practiced at pushing it down. Although aware that this pushing down just takes one little knock, and it’ll spring up and explode…

I can fight the tears these days (well, in public places!). I can fight them, but they’re no less painful, no less brimming waiting to fall. 

It’s equally as painful, there’s no less pain, it is just better hidden. Slightly further down from the surface than to begin with, but no less real, no less sharp.

Feeling like something is swollen inside. That’s the only way I can describe it. I have come through the initial shock, although it feels no less surreal; I often feel I drift, unable to face reality, the vivid, strange, lonely reality, without you.

Time heals? It’s what we all say! But I’m not sure about healing, because everything I feel towards not having you, that’s never going to be healed, not unless you pop back, miraculously whole and well, because nothing can take that away. Short of taking it away, replacing it by giving me you back, how can that pain be any less real?

That’s why at the year anniversary since it happened approaching in 3 days, I am thrown into shock again…

That’s why, nearly a year on, I am watching myself, guarding my hope, without that, I’d be stripped bare.

The kids grow, we visit you. Although that’s changing, and you get to come home once a week for a few hours now. I hope this all changes, for your sake, our kids’ and mine. I will always hope, pray for more. I will never know from one day/week to the next what to expect, what to hope for, that’s why I have to aim high! Believe. Hope.

I believe, as I always have since the day we first met, in the strength of our love.  I see you, the essence of you. Deep, deep down, bar a few recent years which are forgotten completely, you are still there. It’s not necessarily on a conscious level, you couldn’t repeat the lyrics to ‘Penny Lane’, for example, if asked, but listening to the music, you can sing them, and know them. I see you there, deep, deep down. The froth, the damage of the accident, the broken pieces on the top, that hasn’t changed your spirit, your love, your soul, your core. It’s just going to take time for the froth to subside, the deep wounds to heal and the power, the strength of your character to pull it’s way up and through..

Nearly a year; just three days from that.

I’ll fight for you for an eternity, even if you’re never exactly the same as before…

Alex Wood, I couldn’t love you more…


Me xxxxxxxxxxxxxx