Friday, 4 October 2013

Dear Alex, 4th October 2013...Hope and Peace...

Dear Alex,

Through the elements, the turmoil of how hectic, how changeable each day can be, through it all, I love this place. This corner of the world where we are together. It is free, it is open, its horizon vast and sea mighty. The rain does not prevent me walking the dog, the air here seems so different, so fresh.

It is two years today. The fourth.

You arrived back from training, you were white as a sheet, sweating, clasping your head 'my head, my head' was all you could manage. You lie down on the bed, and cannot move...But it is not till I ignore the Dr's diagnoses (that you have a chest infection) and rush you to hospital on the morning of the 6th that they discover the blood clot. You stabilise, spend the night in Intensive Care. You are moved to the neurological ward the next day. Stable for a few days, we think it is all over. You are going to be discharged.

And then they don't listen, they don't listen to either your or my pleas, the Neurologist says another scan can wait till the morning of the 13th. Although you were deteriorating fast and terrifyingly...They just didn't listen, then you have a fit at 6am on the 13th October 2011. As the white coats blur around me, you incredibly manage to clasp my hand, bring your self 'back' you cry 'What the hell is going on?' then your eyes roll, my heart stops, and you are whisked away, and I never ever saw that you again...My heart has never beaten in the same way since...

I hear you mumble as you settle to sleep. I have my Friday night glass of wine, I have the candles lit, the washing machine doing the 12th load of the day, your sheets, more sheets, bedding, clothes, towels, and that's form last night and this morning...You have been lost to me today, after a night where you barely slept again, you cried and demanded and nothing I did was right, from 11am...right the way through. What a day for you to be so far away. The day I need you the most, but you are no longer there to comfort me through what I go through, despite my being there completely, always, for you.

The kids' classes have names, one is in 'Hope' and one in 'Peace'...My hopes and dreams for here, for you, why did you have to go through this?

Lola talks about you today as I explain the day we had this time two years ago, the day on the field, you belting the rugby ball! Trying to evoke images of how you used to be-I don't want you forgotten, the dad you were once...She says that she just sees you as two different people...

...And we carry on the school walk home, going the long way round so we can stop at the look out point- where you can see for miles, forever! And we spot the Most High's promise- a huge rainbow...

I must hold on tight to promise, to hope, clutch at it as tightly as I clutch hold of memories of the old you..

me xxxxxxxxxxxxxxxxxx

Thursday, 3 October 2013

Dear Alex, Two years on...

Dear Alex,

White blown out waves brimming on the horizon as I look to my right out of the front door before we commence a school run in the drizzle this morning. And I breathe. All the feelings of claustrophobia have evaporated since living here. As though my soul feels settled for the first time since your accident. This is the place we will be, we will breathe and we will grow and flourish as a family. Giving each other strength from the love we share. From the depth of hurt and pain we have all been through and are still going through.

It is two years tomorrow, the 4th, since your accident. Since the last time you were you. Since the last time we were together as 'us'.

The day of your accident I have many photos from, as we all went down to the football grounds to use the field- the kids blow bubbles and chase them in the heat. It was so very hot that day. You practice your rugby kicks, you are nervous about going to the training that evening, you want to show them what you are made of...The kids 'oooo' and 'wow!' at your kicks which seem to go up in the bright blue hot sky for miles...I remember so well that day.

It seems I blinked and life suddenly changed. How my world fell in that night.

How your world, the kids' world as they knew and loved it, fell in too.

And where are we at now? We have come full circle, we are back by the sea and you are home, where you belong. Home with your family that you strove so long and so hard to nurture and love and build. Only to be taken away from any of that responsibility, which I bet you would trade anything to be able to provide for now.

It's strenuous, it is tiring, testing, it is the toughest thing we have done yet.

I do not let up on you. I have written you a schedule! It is relentless, I know I am relentless with you, I am amazed you do not get angry with me and tell me to let you rest! I have your routine written out to the most finite detail, from language used around you 'encourage Alex that you are assisting him, do not tell him you are doing something FOR him' to how your head should be positioned, to the exercises to do with you, how even drinking should be done to encourage mobility in both sides, slowly moving the arm up to your lips and back down in between sips whilst your elbow is supported to help the tremor in your right arm. I train all the carers who pass through the door for 13 hours a day, and you, I am sorry, but I never let up on you and how you should be doing things, speaking, eating...

But I need you back, you need to be back, and the small progress I have witnessed since your return, I know will become sand stones, not just grains of sand...

Two years you have been this way, two years I have done this for. Two years ago the kids lost their daddy, and I, my husband.

Just the other day Lola was in tears over an upsetting experience at school, I am consoling her and talking to her, you are wheeled in by the carer who explains I am in the kitchen with Lola who is crying. Suddenly, you burst into tears, you shout 'Why? What's wrong with my Lola?' Both Lola and I rush to you and we cuddle, you kiss her head and we all cry. 'I love you Lola' was all your brain could say, although I know you wanted to console her too. This is the first time since the accident you have shown an understanding and cared for someone else. It isn't your fault-it is the brain damage, but this is emotional progress. It was a piece of gold.

Baby, I have no idea how this is for you, sometimes you are lost in the damage of the accident and are unaware, and that is heartbreaking because my Alex is gone...and yet sometimes you are so aware and so sad, and that breaks my heart in two also.

Two years are home, you are safe, you are making tiny progress, but progress is progress. I wish with everything in me I could speed it up, jump on a few chapters...but if you miss a chapter, you have missed a whole part of the plot line and that is what builds the entire book.

This is us, this is two years on, and if it carries on in this way, I am excited to see what we will have achieved two years on from now.

I love you, more than you will ever, ever, ever know...

me xxxxxxxxxxxxx

Sunday, 29 September 2013

Dear Alex, Inching forward...

Dear Alex,

Skies broad, everywhere I look, out of each window, door of the house. I step out onto the front ramp each morning, as they get cooler, and breath starts to mist before your gaze, and glance over to my right, I see the bay and the sea and the hills and the beauty of God's creation, and I breathe in peace, gratitude and I repeat 'it is early days, we were brought here for a reason' And I feel the healing, fresh salty air.

I am beginning to recognise your patterns, there seems these days to be rhyme and reason (some of the time) to your behaviour, there seem to be triggers. The mornings are hard, you cry and sometimes I can console you, sometimes I cannot, so I have to busy myself with the kids (which on a mad school run, is never hard to achieve!) And tell myself there is nothing I can do, you are warm, safe, in your own home and I will be back with no kids later to be with you and more attentive.

When you are tired, you become unable to switch off, and this feeds into your behaviour which becomes more agitated, confused, demanding, and angry. You absolutely need your sleep. If you do not sleep in the day, then you are unable to switch off at might, and can cry and shout till midnight. Then you wake early, 4am, and cannot get yourself back off to sleep.

I begin to recognise these triggers, begin to see a pattern. I am beginning, also, to know I must 'switch myself off', in those times I know I can do nothing, and those kids need me. You are at home, I do not need to have the heavy shackle of guilt around me at leaving you in a Care Home. You are where you belong, and I see small, tiny pieces of progress which I know will keep on unblocking the neural pathways, they will find new ways of connecting and with time, a great deal of it, I know you will achieve such a great deal more.

Now, I feel, we are at the beginning. I understand more my capacities, my weaknesses, how important sleep is to all concerned! I have to rota in a dog walk, however short, and I have to make it a thought free time. Just me and our dog, and pacing one foot infront of the other and drinking in the scenery, the smells, the glory of this beautiful place, so wide and open and free, for miles I can see and I no longer have the feelings of claustrophobia which I carried for so long.

Are we 'getting there'? Yes, I think we are.

Is it painfully slow? YES! My goodness, yes. We inch along, so slowly it is almost impossible to see the progress, to hold hope and patience...But I have done it for two years now, so I know I just have to keep on doing the same.

Your left arm is far less taught, it hangs down, not contracted up towards your chin. Your right arm moves sometimes slowly and controlled, when supported in the right way, whilst you eat. Your speech, when you are not tired, is better, more clear, and your awareness have never been this sharp. The left leg is slightly more able, and your foot, where it stretched down (the muscles in the shin are weaker than the calf muscles, so this happens when they are not working and the leg is not using the muscles if it is not used enough) if I make you visualise pressing your heel down into sand, you can do it! Which is amazing, a week ago, I had to force it and manipulate it into the splint...

So you see, there is progress, I will keep writing it down, telling you how well you are doing, loving you and making you safe and loved and know that I am here every step...forever.

me xxxxxxxxxxxxxxxxxxxxxx