Friday, 24 January 2014

Dear Alex, A wonderful Day!

Puppy therapy!

Dear Alex,

Walking in the unfamiliar room in the Centre where you are at, I again, have no idea what may be said or the outcome.

It is a Multi Disciplinary Meeting, where most who are involved with you at a professional level meet and discuss with me how you are doing and any issues, any positives, and questions and so forth can be aired and examined. I have my agenda, some issues with a few things, and am eager still to sort out your medications and reduce them all so you are on nothing. The tranquillisers have been totally eradicated now, Victory! And we are now decreasing the epileptic medication slowly and surely. Soon, Alex, you will be drug free, all being well! This is extremely exiting news for me as most of the major side effects of all the medications you have been on up until present can present in agitation, aggression, drowsiness, confusion, imagine being free of all these! I also have always strongly felt that your brain, now damaged, has a heightened susceptibility to medications, the Neurologist is fully behind this.

First bit of good news.

Then they go on to say they feel they can do a good deal more with you, and would like to keep you in for a further 5 weeks and reassess then!

I nearly leapt out of the chair! I am so happy, to hear positives, to hear they can do more with you, that this is not as far as you will get, that even this far down the line, they have hope and feel you will still improve! Coming from the professionals, who usually take a very guarded, negative approach, this is incredible. Everyone is amazed at how well and how quickly you have settled, and you are doing so well.

On a high from the meeting, I arrive home tonight to a phone call, I cannot divulge all yet, but there is a major fundraising event coming up in May and it is the biggest thing yet to have happened to Making Waves for Alex. It is thanks to a generous, wonderful, kind-hearted couple and I will be able to reveal more over the next few weeks!

This is the best day I think I have had with you, and the best birthday you have had, as it has drawn remarkable positivity both on fundraising and progress you will make.

I am in bed, puppy and Esmie lay next to me, I type and I smile tonight.

What a wonderful positive day!

Happy Birthday my gorgeous man!

Me xxxxxxxxxxxx

Thursday, 23 January 2014

Dear Alex, Your Birthday, 35 Tomorrow.

Dear Alex,

It seems a dream, a wild, vivid dream that I have been writing to you since just after your 32nd Birthday, replacing our evening chats with all I have now, writing to you.

I reminisce, over birthdays we spent on a cold January beach in France, with young kids in Whitby for the years we lived there before moving to France. Cakes enjoyed all together, days spent just the 6 of us. Those times have gone.

To have 'gone' at the age of 32 is cruel. To have been robbed of all you had, and oh baby, how much you did have, is not right. Talking to professionals about your 'quality of life' throws me into states of depression and a surreal realm of disbelief. It feels patronising hearing endlessly 'we will get you into bed, we will do this for you Alex, we will take you to the toilet...' I scream from the valleys of my love and my soul 'Please wake up Alex, wake up, come back, be here, now, come back, do all these things for yourself!'

...Knowing I have to humbly accept defeat and let you be 'moved and handled' aspiring for a 'quality of life'.

Resting in the comfort of our kids' acceptance, our kids' love for us as we are.

Seeking gratitude, small blessings, wonderful innocent moments, a stand, a good few hours, a smile, a clear sentence.

I wonder, on the long drive home with the kids tonight, what you may have sad to yourself now, had you have known?

You would surely have told yourself to endure, to tolerate, be patient, keep moving, keep being drawn back to your family's love for you. Not to fear, not to be angry, but to seek control, to physically work harder than you ever have, keep the goal in sight; of being at home with me and the kids.

Your heart and soul, and your spirit would have been broken.

You hold me tight tonight, telling me you love me, love all of us, and a tear escapes from your eye. The kids are watching the TV in the big lounge, we have a few moments alone. You are calm and happy. Heart beat-to heart beat I cuddle into you. Gently talking, you say:

 'I cannot see, but I know I will one day, I just cannot see at the moment...if I could see again, that would be the most important thing for me, but I am not the most important person in the world'

I see it will be OK to probe a bit about your sight, after much questioning, gauging whether it is becoming too much or not, you are very clear, very conclusive; you see nothing, but it is not black, grey or white, it is a pinky kind of light around you all the time, no change, no pockets of light, no figures, nothing like that, just an orangey, pinky light. To me this is better than I have dared think. I imagined it dark, black, always for you. But a slight colour makes me feel better, as if you are less trapped inside an unseeing world.

Baby, I wish and pray and hope so many things for you.

Another birthday here, another year on...And I will keep hoping and praying these things for you.

The photo I have put up, the 'selfie' of us all depicts the tone of the evening, and after this photo is taken, you cuddle all the kids close and say 'I love all you lot, so so so much...'

And, oh my honey, how we all love you...

Pride swells in my chest as I kiss you goodbye tonight. Knowing still, this year will be a good year...

Me xxxxxxxxxx

Monday, 20 January 2014

Dear Alex, A year lost.

Dear Alex,

It seems you were settled today, each time I spoke to you on the phone you were happy. You even understood I would not be coming in till tomorrow due to a migraine. Usually you become angry and start shouting on the phone, and then I cannot get through to you.

Whether this is progress or just a better day? But whatever the reason behind it, at least you did have a good day.

Our puppy, Betsie, bounds around, leaping up on me and running away, tail wagging and I love to see her so happy, fully integrated in our family. To witness the love that we all have in abundance and how she has absorbed this and is a part of our family. You have loved stoking her and holding her, and I now avoid the questions about Oliver, knowing I cannot tell you again, for you to have to go through the pain of hearing he is lost from this life to us. Although I see small improvements in your memory at times, you remembered this evening an hour or so after he left, that a friend of ours had been in to see you. If I ever ask 'who's been in?' Knowing full well who has visited, you shrug, unaware apparently.

Despite the day yesterday, I still feel full of hope. Of wonder at where you have come from, to where you may be able to get to.

I read back over some of the early news updates on your Making Waves For Alex website and see how at one point you wiggled a toe, squeezed a hand, opened your eyes, and I remember those days. Not well, not vividly, although they are burned into my soul.

Today, you can stand, you can say words, sentences clearly when prompted, you can sit on your own, stand up from sitting with the aid of a Rotastand. The enormity of the progress you have made, the year you lost in the Nursing home in Amersham, and yet you still continue to progress.

I am holding on to all of this, and willing you on in every way.

I am so proud of you honey, you an inspiration to so many.

Me xxxxxxxxxx

Sunday, 19 January 2014

Dear Alex, Our baby girl, Lola.

Dear Alex,

"I'm all alone, I want to be with my family, when did we last sleep in a bed together?"

This is what I am greeted with as I see you today. You seem tired, slightly agitated and we remain, me and the kids, only two hours, it all gets too much. The staff seem to be getting to know you, you are interacting well with them.

As you talk to me now, I see a difference in your speech. A good thing, your language evolving, developing. Although as I come away today, heart trailing, tears in my eyes, I realise you are not the same person anymore. You are completely different, and I have to accept this now, as I do not think that this will change. Despite the progress you make, physically, and I hope cognitively, you are not the Alex of old.

Not the man I fell in love with and married.

The man with the same eyes, yet eyes that see no more.

To not see your babies grow, to witness them growing.

You stroke Lola's hair today to feel ow long it is, and put your hand on her head as she stands up straight to see how tall she is. And my heart bleeds for you as you won't see this baby girl of ours develop from a young beautiful girl to a beautiful young lady.

The clouds at dusk bewitching as a yellow sky radiates their darkness. Their shapes, almost like 3 couples looking into each other's eyes, and I wonder if it is? I wonder if one day, by miracle you will see again and we will be able to look into each other's eyes like the cloud couples?

Lola seems very affected by seeing you today and comes down after lights out in need of cuddles, reassurance to allay her tears. She tells me she misses who you used to be, the 'daddy I used to have' as she puts it. So I let her fall into me, tears running down her nose into my jumper. I let her cry, feel the sadness and stay with her as she falls back to sleep holding my hand.

I pray, my angel, I wish you see again.

I will be in again in the morning, and I will love you always,

Me xxxxxxxxxxx