Saturday, 8 September 2012

BBC NEWS.....WOWSERS peeps!!!!






To all those who have joined in in my battle- look where you all helped me get to..!!!! I am so proud to be part of this community today...THANK YOU for all your help and support- I never knew the goodness in people's hearts...

I haven't had time to reply (regretfully) individually to everyone who has messaged me to offer advice, but wanted to thank you all SO much, from the bottom of our hearts for your time, encouragement, love and support...

I have been absolutely blown away by the responses and had no idea how incredibly humans could pull together to try and make a difference...

Here's the link for the BBC Oxford news link, thanks to Nikki and James the camera man for your time and efforts...


WOWSEROONIES folks...in the words of my husband....




http://www.bbc.co.uk/iplayer/episode/b01mhfsp/BBC_Oxford_News_07_09_2012/







Thursday, 6 September 2012

S.O.S...

 
The battle of my life…




This following statement I am writing in the hope that it may fall upon the person out there I need to help me in this dire situation…I am writing it for anyone to use, re-post (if you would? Thanks) and to anyone out there who might listen and help…


We live in a country where we thankfully have the NHS, the benefit system, thank goodness that IS in place to help-but as they have cut off my benefits till some kind of proof of something or other is provided, I am now in a dire situation and unable to feed my children…The system is NOT working for me, but against me…Surely we’re the ones they are put in place for???

After my husband Alex Wood, suffered a severe brain injury on the 4th October 2011, my life, now nearly a year on becomes not easier, but ever more fearful and stressful.

After a few weeks now of insane trials, fighting against the benefits system, fighting for funding for Alex and my head spinning with where to go next, I am now writing this as I have to take this a step higher…

Yes, Alex is making progress, and yes, we do have some kind of future, yes, I am 100% behind him and on the frontline battling for him to continue making this progress, but for Alex to continue making progress, caught up, now in the dependent position of being a ‘single mum’ of four, aged 8, 7, 6 and 4, in order for me as their mother to feed, clothe them, keep a roof over their heads, I am fully dependent on the benefits system, and reliant on the council finding us a council house adapted to Alex’s needs, now blind and severely disabled and cognitively impaired…

The council tell me ‘there are no properties suitable’…Will there ever be?? Alex can visit for extremely short periods only as he is restricted by the lack of access and is, in effect homeless, as he cannot be housed in the temporary house we are in…

The situation is, that I alone am now responsible for providing for our four young children, for fighting to get the right and sustained funds for Alex’s rehabilitation and re-education. I have to be everywhere, and have to be everything for everyone, whilst running a house and making sure the kids have clean clothes amongst a myriad other chores…Whilst living with indescribable grief at the loss of the husband that Alex used to be...

Surely the system is there to help people in difficult situations, that’s why it exists doesn’t it? But my experience is that it is there to hinder and after receiving a letter telling Alex he has a job interview on the 28th September which if he doesn’t attend could effect his benefit (Employment Support Allowance) is just more than ridiculous…They tell me when I ring the job centre they’ll do it over the phone instead…??? Do they not get it? He is utterly and completely incapable of this…!

I fight daily battles, not just on an emotional level facing the fact that my soul mate, my whirlwind romance, my everything, is not the man he was, and all the grief that leaves me to deal with, but surmounting this, then further battles with the benefits system, a car which is on its last legs and not having any idea how I would ever replace it…

The system clearly does not work for people who genuinely need it. And I genuinely do!

I am not sat about all day on my bum wondering what I can do today with peace and quiet…I am out there making calls, thinking of and organising fundraisers for my husband, planning things for the kids we can do for free to give them a good childhood. Counselling them as they need it, their dad is not the dad he once was, and they grieve this terribly, as do I.

So who can help me? Who will share this? Who will help me get this to the right people who can make a difference and take my story on board and care enough to do something about it?

I have written to Boris Johnson, he might help?

The local MP, John Howell, in Thame was not interested, one of his secretaries emailed me weeks after I sent a desperate plea saying they did not deal with cases like mine, to go to the council…This does effect him actually, he is a government MP, under the noses of the government I am (as the child tax credits have been put on hold till I provide a particular piece of evidence) a mother of four under eights with no access to funds to feed my children…

I am going to approach the Labour Thame MP with what he might be able to do in light of this.

If you can share this post, spread the word, that will be doing me a massive service…

I am turning my fear for not being able to provide for my kids into rage and action…in the frontline now as I need help to get Alex the right rehabilitation, not at the mercy of the NHS and the fear that the indefinite funds will one day run out, and he will not have the chance he needs.

I have to fight for him, I have to fight for my kids, any other mother out there in my situation would do the same.

Thank you for listening, thank you for sharing, and I hope this gets my story out there and Alex does get the chance he needs…

La rentree, ca y est!!!! All ready...and scootered up!

First day back- La Rentree!!!

Trop mignon en uniform!

Looking good kids!


The littlest on her way...too emotional!

The uniforms!!!

Scooters-chosen method of transport to school!

All ready, nothing like leaving it till the last minute!!!

Tuesday, 4 September 2012

Dear Alex, 11 months today...already...







4th September 2012


Dear Alex,


The end of another school holidays…which also marks the 11th month anniversary since your accident…It's been nearly a year, and by far and away has felt like a lifetime has passed...


Not surprisingly it has been a day of emotion.


Our youngest starts school tomorrow, that’s it, last one there. I thought I was alright with it. That she’s ready, I can’t carry on trying to do all I am and at the same time be there enough for you and for the kids. Pulled in all directions, with Esmie safe at school, I know she will do well. But then as I sit and think about the fact that she is ‘off’ that the school years pass so quickly, that you’re still not a daddy at home to bring up the kids, give them the sound advice you always did, that this last year Esmie, I feel, I have dragged around with me, visiting you and organising things for you, I feel for her, especially, she has missed out on the year, a crucial year, the last before she starts school and I won’t ever get that time back.


With every next step, a new school day, a birthday, something that marks time and how it chases us, and how the one thing we have no control over is how fast it wants to speed us along. With all these moments, I feel emotional and feel guilty, feel I haven’t done all I should, and it’s now too late.


A song on the radio in the car on the way home hit me with the unexpected ‘grief tears’ in front of the kids, and I cry, Lola’s hand on me, Monty looking worried in the back, the other two sleep. I always explain the tears, laugh about my teary induced ‘squeaky voice’ and mascara tracks…I always let them in, and pull myself through and cuddle them, find a quiet moment later on with them to explain again, and re-enforce that I am OK, even if I cry. We cuddle lots before bedtime, they’re nervous and excited about starting back…

Esmie and Mitzi have formed a wonderful tight friendship this holiday, as the other two have been old enough to play out the front with a few school friends who live in the neighbouring houses, Esmie and Mitzi have spent lots of time together, and it’s been a privilege to witness their friendship blossom.

We spent the day at the hospital, made bunting for their Tea-party they had this afternoon, and I have never seen you chatter as much, so much clearer at times…your laugh is contagious and everyone including the kids enjoy today so much.

But then when it’s time to leave you grab out, panic, tell me not to leave you, you want to come home with us. I can’t imagine what this does to you and you scream and thrash about, angry, confused, upset. No amount of reassurance that I’ll be back tomorrow, first thing, comforts you, and a guy from the centre talks to you, a nurse brings you a coffee, and you do settle. But the ending has stripped me of the high I was on when you were so on form and so happy.

Monty looks at the clouds on the way home, suddenly says ‘hey, mum, look! There’s an eagle landing on the earth…’ and sure enough, the cloud’s shape was a bald eagle swooping down towards earth…it was so clear, and it was a breathtaking sight…

This period of time is difficult, not knowing, accepting, flash backs of how you used to be…I have learned to go with it a bit more. Times I feel this, times I am numb, times I am OK, times I have relentless sleepless nights plagued with violent nightmares where I am being pulled and it seems people are pulling at me and I wake myself trying to shout and scream, and the covers are off me and I am sure I was gripping them tightly around me. These dreams are so real, so terrifying and I sweat and panic and dare not go back to sleep again. You would have been there to cuddle me in your big arms, comfort me, stroke my hair till I fell back to sleep…now I have to do it trying not to disturb the kids and alone…

Tomorrow is school again, despite the setback by your emotions plummeting when it was time for us to leave, we had an amazing day together, your laughter and you being so on form brought a smile to everybody’s faces…


I am able to see you tomorrow on my own, and I am looking forward to that…


Someone sent me a quote which was very encouraging:


"By not knowing, not hoping to know and not acting like we know what's happening, we begin to access our inner strength." Pema Chodron.

I am working on that inner strength, it’s a constant battle, but I am always up for the challenge!


See you tomorrow Alex, I hope sleep brings you healing and comfort and rest,



Me xxxxxxxxxxxxxxxx

Monday, 3 September 2012

Dear Alex, The choice we all have...



Check out the posture!!!


September 3rd 2012

Dear Alex,

Parking myself up in front of the computer (earlier than usual, I hope to sign off before 1am tonight too!) I have decided to write off the negatives, the stress that engulfs, and focus on all the positives that lay ahead, and have occurred…


The kids and I come in this morning to your beaming smile as you hear their voices, your laughter as they immediately commence a barrage of requests for this or that and you smile broadly as I ask you if you had expected a mellow Monday morning? I have a meeting with the person who has put you on the list for the centre nearer to us. And Mitzi and Esmie stay relatively quiet to allow me to ask the questions and listen to all she has to say. Monty and Lola amuse themselves playing on the computers and eating a lollipop-well, desperate times and all that!


It turns out that although the other centre is not ideal, our hands are tied and it’s the most suitable of all there is to offer…I can only take this one step at a time, deal with it in bite size and hope there is a plan in all this that is there to move forward and not back step…


The centre is a fair way from me, but apparently it’s the nearest that will still offer frequent therapy-essential for you. The other place nearer, is not very therapy oriented and offers therapies only twice a week. I am advised that if the funding is there (albeit not unending and NHS have suffered cuts quite severely in the last 5 years) to take it. After this next step-well, I will just have to get fundraising and hope that some arrangement can be reached with you getting the physio, all that is required and that you will then be further on and your ‘Makingwavesforalex’ fund is fruitful enough to give you the chance you need…


After a morning of news and funding restrictions and grizzly children and having woken determined to make this a good day, you are distraught when it’s time for us to leave. So I tell the kids our afternoon plans are going to be pushed back, and we’ll have lunch there and see you afterwards. You calm and cuddle me tightly and say ‘thank you’.


You seem more tense, you seem aware, you are very distressed, so the kids are wonderful, they play on their scooters outside and I tell them I need some ‘daddy time’ and that I need to talk to you.


This morning I had woken up, feeling love, feeling overwhelming love, from everyone’s messages of support and encouragement last week, and I look and can’t wipe the smile off my face at breakfast time as I bask in the chatter of our kids and how love is so strong, so powerful, it can put such a smile on my face even after the week last week, and the prospect of our future looking fairly bleak as it stands at the moment. This inspires me to tell you that in fact, you have not been diagnosed with something terminal, this is not a path towards the end of your life, that you are fixed, and firmly on the path to recovery. You’re going nowhere but being carried along by love, from us, yes, but by so many others that the love is strong and powerful and like a wind behind you pushing you on. You have your mind, and as you have your mind, you also have the capacity to roar…like the lion in your own conscience that you always told me to be. You can visualise the lion, as distant, faded as he may be, he’s there, and you can challenge your thoughts, make the decision and you DO have the power to control, or at least to try and practice (and through practice…) being a lion in your own consciousness. That in you deepest moments when you fell you have no hope, no control, as scared as you must be, that you still can control your mind, as difficult as that may seem.


The fascinating thing was that although you cried, got frustrated, after continuing to talk you through it, you harnessed your emotion, you looked spurred on, determined, and holding me tightly, you understood the path you were on and what you CAN do in the part YOU have to play in it.


I think you felt a sense of relief that I know you are still Alex, you know you still are, and that the choice you still have is to ‘use the time that is given to you wisely’….in the words of Gandalf the Grey…


As do I, I can’t do much about this situation at the moment, but I do have a choice, I can buckle under the pressures, take the stance that this is too much for me, and give in to feeling resentful and how unfair this could feel, OR, and the stance I so determinedly battle to guard, is one of faith and trust in the Most High, that I am equipped, by the people who have chosen to listen, give their time, their emotion, their love and their support and encouragement, and let the waves of this carry me in the direction love always does carry-the most powerful of waters, supported, fast flowing in the right direction. Of not giving up, but grasping firmly at hope and the hope others have for you too…


So although nothing has really changed as to where you are going, desperate funds are still needed, I shall not buckle! I shall not break! I shall be strong and determined, because I do have the choice to be that way, even though it seems the harder thing to do and to be, it is the most rewarding, and it will carry us through, anchor us in the sea of troubles we feel we almost capsize in sometimes…


So I want you, Alex, to choose, to believe, to feel the love surrounding you, the fact that this situation has not taken away your love for us, our love for you, and no matter how hard this is, we WILL come through…


Thank you everyone for all the love and support, it’s carried us and is carrying us through this next vulnerable and frightening stage…


God bless everyone for all that each and everyone of you are, and let this week be an almighty week, going into it with the sound of roaring and determination!!!




Me xxxxxxxxxxxxxxxxx