Saturday, 16 June 2012

Der Alex, we are staying put for a few months- heaves of relief...

8th June 2012

Dear Alex,

‘Mummy? Can I smell you?’ were Esmie’s last words to me tonight…hot water bottles prepared, dou-dous tumble dried, yes, I finally have a plumbed in washing machine, and three days later am still not caught up!

Peels of hysterical laughter have followed us all afternoon and evening, as the kids are in high spirits, and the jokes have prevailed, from ‘knock knock? Who’s there? And then any answer that goes on for a long explanatory time trail on for ages, hilarious in their length rather than the punch line.

They have enjoyed the Jubilee celebrations, although are tired out from coming in, bar a day or two to see you in the evenings.

We had your meeting yesterday, and I went with dread. There was no need, as the Therapists were full of praise and have given your new discharge date for the 3rd October, which will mark short of one day the anniversary of your head injury to the day. A poignant date, and the last day I spoke normally to you. We were hot and sunned up on an afternoon down on the playing fields, practicing your rugby kicks, wowing the kids (and me and the dog) with your kicking power and speed and strength (in fact the photo on the top of my blog is the kids ‘oooing’ at your kick, ball flying above their heads as I snap shots…no one knew what the next day would bring…

The therapists have seen much improvement, and think they can work you even harder over the forthcoming months. So the good news leaves me beaming all day, not quite taking it in. the implications are huge. Manifest. It means I can breathe for a few months, staying put in the same house (unless an adapted one is found in the meantime), the kids stay in the same school, we have a few months of stability in front of us, not the unknowing, dread of knowing I will move to wherever is deemed best for you after your time in the OCE.

The grief that piles high everyday is a difficult one to tackle. Sometimes I battle against the inner scream when people, convinced that the fact I have parked in the wrong place, or not been in touch have negative things to say, I battle against the urge to scream out in pain and anger ‘have you any idea what it takes for me to get out of bed on a morning??!’

But then, everyone has things to deal with, no one ever knows what is going on for the next person. Even the people put out by my errors, who knows why it effects them so much? Who knows if for them, they have horrific tragedies ongoing in their lives?

This journey for me is one of hard learning, patience, endurance and stifling bitterness at times.

Our family motto is ‘not out of anger, but out of love’. I try to inhale and exhale this, when the kids fight, teach them to take a step back from the emotions that overwhelm, take over, and say this. Trying to advocate forgiveness, understanding, rather than intolerance and anger.

When we judge, even in our response to people, we have no idea where the other person comes from, what their life has been, and I had just that bit more patience to breathe before reacting, understanding I do not understand, then I think the patience and compassion I could teach my kids through example would be a lesson more powerfully learned. Ingrained, rather than preached and not practiced.

Your speech is inconsistent, more times than not incoherent. But at times a word is formed, it is comprehensible and well formed. The speech therapist continues to work on the swallowing with you, strengthening those core muscles, re-educating the damage done to the signals between your brain and the muscles in the mouth, throat.

It is so incredible this new date given. I feel relaxed, not on tenter hooks for the first time in over 8 months.

Many improvements, slow, but critical have been seen on an even week-by-week basis by you. Even home visits, where you will be able to come home for an hour or so every so often will be put in place as a goal for you too.

I am still walking around, empty without you, nothing to fill the void, the memories of you I cannot, still, face. I can only cling on to hope and hope and hope, healing with much time, without thinking how long this journey will be.

Me xxxxxxxxxxxxxxx

Friday, 15 June 2012

Dear Alex, another back dated letter, slowly getting there with the letters of now to come...

After the rain, kids splashing in dressing up heels, only one in sensible footwear...

6th June 2012

Dear Alex,

Once dead vines regrow from having been hacked back vivaciously by my friend Vanessa. Sprouting green vibrant life, reaching over the wooden frame threatening to fall in the unkempt garden of the new temporary house we’re in.

I am struck, never have I witnessed such an awe inspiring sky. On my way home from the hospital and then picking up the kids from their grandparents house where they went to the zoo, I dash into a lay by, where I send dozens of quietly grazing rabbits, white tails bobbing to find safety from the intrusion of my car. I had to pull over, I had to memorise this sky. How it threatens and folds, lingers on the horizon, black and grey, foreboding clouds. To my right, never have I seen a sky so beautiful. Never have I witnessed a sun shining silver white light, powerful, strong, overpowering. Glimmers of this silver light shine pockets of prisms, pressing through the trees, hedgerows by the left hand side of the road where I have stopped. Despair and promise, starkly divides the sky.

The sun, silver in all its glory peers over the horizon, highlighting the countryside around, silhouetting rain thrusting its advance. It is mist and silhouettes, beneath a powerful silver light. Nothing can hide it; it is breathtaking. As I watch, birds, colours unshown, dance and glide towards shelter.

The sky displays the dichotomy in life. One side, if we choose to turn our backs on the other, is loud, admonishing, barely reflecting any light or hope at all. The other side is full of transparent magnificent beauty, standing between these two skies, I am humbled, I am small, but not the only one to notice, as a lady, too pulls over and gets her camera lens out to capture the significance.

It has been a long hard few days. Unclear as to where I am going, what is expected of me, unable to answer any of the myriad questions that present themselves to me. Unable to fight the grief overwhelming me for the you you used to be, as you, that you, is gone now. No one can tell me in what capacity I will get you back, I have to cling on to the sky on my right hand side, no matter how dark, threatening one way looks, light protrudes, fighting, challenging the omnipotence of the grey, dark side of the sky.

You have had botox injections in your left arm, in the elbow, and a cast put on, this is so they can try and regain the motricity in this side before it’s too late and the muscles, so long contracted now, loose any hope of extending again. You are in pain, unable to recall the reason you have the cast stretching out these muscles on your left arm. Once I re-explain, and you have some painkillers, you settle. I take you out to see Oliver, our dog, who I have brought with me today. He’s looking out, expecting you, and flings his furry body and wagging tail all over you, you make such a fuss of him, and say his name, delight on your face.

You are now eating one whole yoghurt a day, with the hope of moving onto pureed vegetables. This progress is phenomenal, and you put everything in your mouth, hoping to find food. Only my arm wasn’t and don’t bite me again, it hurt!!!

Small steps, and another meeting for you tomorrow, this is your discharge meeting, we have limited time here now till you move on to the next place, which has to be very carefully thought about. it has to be right for you.

I have faced the loneliness of losing the you you once were, am facing it daily, some days I seem to do nothing but re-apply ‘waterproof’ mascara, suck in the grief and walk out with a smile, other days I am reclusive, only going out for the kids, to do things with them, make their half-term one filled with activities.

Life without you, Alex, is something I never thought I would have to face, and cannot believe it’s real. Occasionally I glimpse someone who has a look of you and my heart dives into my throat, convinced you are there. Then I realise how much I am still deep down very much in denial, as facing what I should be is too much, unthinkable, I can not go there.

I prepare for tomorrow, hope some light may be shed as to where we may be headed next, so I can prepare the kids for the next move.

I don’t sleep well without you, without my legs wrapped around your strong legs, comforting me, soothing me with your protection and your love to sleep.

I long for this, for you.

Beauty in nature inspires me, takes my breath away on a daily basis, I thank the Most High for the blessings all around.

For the kids with smiles and laughter, and the time we have together, hoping one day it will include you too…

I love you Alex, you are the only one, and I will fight everyday, every minute of everyday to get that back…

Me xxxxxxxxxxxxxxx

Thursday, 14 June 2012

Dear Alex, June the 3rd, we were moved and this was then...

Moving and princess day...

My friend Lydie (who came over from France with Vanessa and her daughter Margot) and a sleeping Esmie in her arms...

3rd June 2012

Dear Alex,

The heavens have opened, it pours. Skies reigning grey and horizontal, water, streams, puddles. The Bananarama song repeats in my head ‘It’s a cruel, cruel cruel Summer, leaving me here on my own…now that you’ve gone…’

Kids splash, chomping at the bit to be set free in the glory of the rain, tearing through puddles, collecting sticks and leaping at trees to soak further their sodden clothes. It can not help but provoke smiles and laughter at their glee.

Darting in and out all day, everyday, I have not had time to sit yet and take stock. We’re moved. All boxes packed, unpacked. Beds demounted, re-erected. New place, new people, corner house, number 27. The garden is the best bit, although wild and overgrown mostly, the space is a haven. It’s the corner house on a terraced housing block, but with an alley down the side, and French windows opening onto into the open dining room/lounge, once a ramp is fitted, you will be able to visit when you are ready to home visit.

The kids around go mostly to the same school as our kids, and the walk is 5 minutes. Esmie piggy backed, Mitzi grizzling, Monty and Lola smiling and enjoying the freedom of a walk everyday to and from school, as am I.

Still no internet, no hot running water, no heating! Hopefully before long this will be fixed, but the boiler was leaking gas, and was switched off before we moved in nearly 2 weeks ago.

The half-term is here, and Summer holidays approach. I get very tired in the holidays, juggling all, and bringing kids who do not always want to come into hospital, in to see you.

I do not give them a hard time, it’s their right to feel however they do, but when I do not have much choice, it’s with sadness and biting back the tears when I hear their cries of ‘oh, again, but we went in yesterday, and the day before, and the day before…’ there’s a mixture of reasons. One of which being every time we come in, they have to confront the fact that this is still as it is. You are still where you are. Now 8 months on, to the day. It’s a whole long time in a kids’ life, and when, although you make progress, now eating a full yoghurt a day, and talking sometimes well enough to be understood, the fact remains that you are not you as you were, they do not get to do things that normally kids do with their dads. And none of us know if, when this may change.

There was a fun day organised by the church we go to today (  and the kids and I set off picnicked up at 9.45 this morning. We spent the entire day the kids amused, colouring in competitions, best costumes, crab football (yes I had a go and got hand ball as I saw the ball flying at my head, panicked and sent it flying off any old how with my hand-but it was self defence ref!) I union jack flag face painted like trooper for what seemed like hours, mine I managed to get in head locks to do their, but as it didn’t seem that ethical on anyone else’s child, the rest went out happily skew union jacked flagged faces…we drove straight from the Jubilee picnic and games fun to the hospital. I had wanted to give the kids a day then see you in the evening. But they’re tired, and I do not know if the evenings work. We cannot be there till 6pm, and get in at nearly 9. Which is late for them, and the 6 am morning arise is early…but my hands are tied. If I take them in the day, we are confined to the hospital with not much to do. So doing the day stuff and taking them in the evening seems to be the solution, although, apparently not…

Still, we’ll reach the balance.

An important meeting for you is coming up on Thursday; it’s your discharge meeting. At best we will have 2 or 3 more months there, at worst, 1 month. So plans towards the next stage of care for you needs to be addressed, on to the next place…

Well, my washing machine is still not plumbed in, I have not had time to call the plumber, the dirty washing spills from cupboards relentlessly, like the rain. But that will be sorted at some point too. And I shall not go out for 4 days straight to catch up with the washing!

Time moves on, fast, but so very, very slowly too. Many challenges confront us, and the struggle for the strength I need, I fight for.

Thankful for the beds, the roof over our heads and food in the cupboards and fuel in the car to come and see you. Blessings of everyday; I thank God.

Such a confusing time, so many things to try and balance, I pray for strength and sit quietly in my mind, trying not to let the tornado of what’s to come, and when, hit me and leave me floored…

I will see you tomorrow Alex, the kids and I are in in the morning. Sleep peacefully, heal, rest.

I love you, forever,

Me xxxxxxxxxxxxxxxx

Wednesday, 13 June 2012

Dear Alex, a catch up...bearing up and pushing on through...

I have been moving and internetless for a wee while now...After spending 40 minutes on the line to my internet provider we finally discovered the problem after many line tests and so on- the power lead to the internet box was not plugged in...It had been lost in the move, along with a great deal of my sanity...

But I am back!

The internet is up and running, and I wish I could...!

I will be putting up several blogs over the next few days, that would have gone up had I had the 'net.

The good news is, that Alex has till the 3rd October in the Oxford Centre for Enablement, and I, therefore have four months in this house, four months to breathe a while...It is the day before he had his accident, the 4th October 2011, so a significant date for us. 

The kids ask how old they were when daddy had his accident, and nearly nine months on, they were all nearly a year younger. Lola's birthday is this Monday, and another of my babies turns a year older. Time races, although every day seems too long...

Here was the first letter I would have put up a while ago...

My uncle and me 'racing for Alex' still urgently requiring funds...

May 20th 2012

Dear Alex,

Washing machine drones, fairy frock, uniforms twist, remnants of the week and the day. Broccoli soup stains, butter engrained, washes away. Warm soapy bubbles cleansing, taking away, making new clothes to rewear.

If only life was like this! We put ourselves in a tub, got our insides, emotions, tears-soapy bubbled away, ready to re-wear ourselves, fresh and new. Ready to take on another day.

Today was so hard. You have had a haircut, the reminder of the hole in your skull floods back the flashback memories of the time just before your first operation. A time before you were whisked away, and nearly didn’t come back. You block it, and continue, block and continue, the masks, scrubs, hand sterilisation, machines, tubes, constant checks, machine keeping you breathing firing away. It was just 8 months ago, but feels years ago.

You were alright today, the kids had ‘crazy races’, on hands and tiptoes, wheelbarrow races, pulling themselves along the vinyl floors by their hands like snails. I commentate, you hear them, your laughter thrills, their giggles of delight and fun wash, cleanse.

As I cry I try and push out the pain, my need for your arms to strengthen, cradle and support me. I can’t explain to anyone how this feels. I can’t just soapy bubble it away, I have to pull through it…

Then I have to leave, you cannot take this, you tell me ‘miss you’ you try and tell me other things, they don’t come out. I cannot put a brave face, cannot turn it round with a quip. I cuddle you, your right arm holding me. It takes 25 minutes till you and I calm enough. And I have no choice as visiting does not permit to be there any longer, and the kids and I have to leave... 

Oh baby, who you were to me, how it was, the daddy you were. Monty too, the girls, all cry the whole way home, I listen, do not cry, let them express. Monty tells me life is ‘boring’ now, he tells me it was bright and fun when you were around. They grieve, I grieve this old ‘you’.

I want it all washed away, all just put back to normal family life again. I don’t want to be without you. I WANT YOU……..

Who knows how long this will take? Who knows IF you will be back?

I wait, I pull through, wearing butter stained me. No ‘vanish’ to renew, just a collection of emotions I have to live with, plough through, and I ache. I ache so much for just you.

I have lost my best friend…let it be temporary...

Please come back,

Me xxxxxxxxxxxxxxxxxx