Day 41 - High Hopes

Happy New Year

It's New Year's eve, and we are sat here at home. Cleo is unofficially discharged from hospital, that should officially happen on Tuesday. I collected her this morning, for what was originally going to be just this evening, but as they were looking at an early discharge in new year anyway, and taking into consideration how well we had settled into a routine over CXhristmas, they have said no need to go back.

Of course there is still much work to be done, and as I explained yesterday this is the opening of a new chapter in the Road to Recovery, where we must begin to be more proactive ourselves in cleos rehabilitation, rather then rely on the care team at the hospital. Of course we will be guided by them, and follow their plans, and instruction, but we can do much more for ourselves now, in our time, and at our pace.

Tonight we can close the book on the last few weeks, in a sense, and open a new year, and a new start. With cleo here at home we are relaxed, and comfortable. There is less pressure on all of us.

I arrived at the hospital afetr work this morning, to be met at the door of the ward by cleo; I think she was eager to leave! Everything was packed up, and ready to go, and it didn't take long to say our goodbyes, get cleo into the car, and bring her home again. This time, for good.

It felt like a great weight lifted off my shoulders as we drove out of the hospital, although i can't explain that feeling exactly. More like I now have cleo back home so i can watch over her myself. I am even more protective of her now than I was 2 months ago. I suppose that goes without saying.

I intend to learn as much as I can about physiotherapy and rehabilitation techniques, and i will, at cleo's request of course, keep pushing her to achieve the next step along the way. We will set a plan, and goals, and targets, and we will achieve them too.

High Hopes

Pink Floyd wrote this great song, called High Hopes, and the words mean a lot. They work on several levels... listen and read the words, and luxuriate in Dave Gilmour's guitar solo at the end..wonderful!

use the player to listen:

Beyond the horizon of the place we lived when we were young
In a world of magnets and miracles
Our thoughts strayed constantly and without boundary
The ringing of the division bell had begun

Along the long road and on down the causeway
Do they still meet there by the cut

There was a ragged band that followed in our footsteps
Running before time took our dreams away
Leaving the myriad small creatures trying to tie us to the ground
To a life consumed by slow decay

The grass was greener
The light was brighter
With friends surrounded
The nights of wonder

Looking beyond the embers of bridges glowing behind us
To a glimpse of how green it was on the other side
Steps taken forwards but sleepwalking back again
Dragged by the force of some inner tide
At a higher altitude with flag unfuried
We reached the dizzy heights of that dreamed of world

Encumbered forever by desire and ambition
There's a hunger still unsatisfied
Our weary eyes still stray to the horizon
though down this road we've been so many times

The grass was greener
The light was brighter
The taste was sweeter
The nights of wonder
With friends surrounded
The dawn mist glowing
The water flowing
The endless river

Forever and ever

Day 40 - Coming Home

Cleo was naturally down last night, having had to return to the hospital, being away from the comforts of home, and family, and a couple of our phone conversations quite late yesterday underlined that. There were tears, and a resentment about being apart again after we had managed very well at home over Christmas. Of course it was only for a couple of days, and she would be back at home for New Year's Eve. The promise then was, provided that all went well over the next week, she would probably be discharged early in January.

This morning, we got great news! They are discharging her.

James is going to see cleo as an outpatient for a while, which is unusual, and OT have given their approval for her to come home on New years eve, and subject to a call from james to home to check everything is OK on Tuesday she can stay. So, I will collect her in the morning, and I would suggest that the first part of cleos Road to Recovery has been successfully negotiated. From here it will be about her perseverance, and much more working on her own rather than with a physiotherapist every day.

That is not to say the next few weeks and months will be any easier, far from it, and the work that must now be undertaken is much more in our hands rather than someone else's. We will need to set personal goals, and better define the routines we have at home. Of course having cleo at home will be brilliant, and she will be far better off there, but that will mean some changes in certain things at home: not least for the girls. They have been wonderful, and Sarah of course has accepted responsibility for looking after her mum when I am at work, which for a 17 year old in her final year of A-levels is a massive undertaking, and one for which both I and cleo are very grateful.

When i look back over the last (nearly) six weeks, the highs and lows, the tears and laughter, I am struck by one thing which has shone through this time, and that is the love which cleo and i have for each other. That love has certainly made me stronger, and has helped to drive me through the bad times; times when i have sat at home alone and cried, when I have felt totally drained by the emotional turmoil of worrying about my cleo.

From now on our fight to get cleo better takes a new direction as i have said, and I hope that the love and deep feelings i have for cleo will help her to make the progress we all wish for her.

The Road to Recovery is nowhere near it's end yet, but with the New Year and cleo at home we as a family can concentrate all our efforts on her, and her recovery. In a sense it's a new start and a new chapter in this diary.

To all our friends who have sent well wishes and messages, and kept up to date with this record, cleo and i would like to say, yet again, many many thanks for that support. We wish you all a happy, prosperous and especially a healthy 2006.

Welcome home cleo!

Every Breath You Take

Good words to this great song by Sting, with the sentiment that I will be watching my cleo through every step of the way.

Every breath you take
And every move you make
Every bond you break,
Every step you take
I'll be watchin' you

Every single day
And every word you say
Every game you play,
Every night you stay
I'll be watchin' you

Oh, can't you see
You belong to me
How my poor heart breaks
With every step you take

Every move you make
And every vow you break
Every smile you fake,
Every claim you stake
I'll be watchin' you

Since you've gone
I been lost without a trace
I dream at night,
I can only see your face
I look around but it's you
I can't replace
I feel so cold
and I long for your embrace
I keep cryin',
Baby, baby, please

I'll be watchin' you

Day 39 - Parting....

"Good night, good night! Parting is such sweet sorrow, That I shall say good night till it be 'morrow"
William ShakespeareEnglish dramatist, playwright and poet, 1564-1616

And there is the crux of today's post. Cleo, as arranged had to return to the hospital. To say it was not easy does not even come near it. We had become comfortable with cleo back at home this last few days, and had got a routine going. Unfortunately it is in cleo's best interest that she has a few more days at the hospital to complete the plan for her care after discharge with james the physio, and the rest of the team.

While we both understand the reasons for this, and we promised we would not make it hard for each other this evening, it was always going to be a tough time. And of course there were tears. When we got to the ward we sorted cleos things which we had brought back with us, and then went and had coffee in the cafe. Returning to the ward I sat with cleo a while and then put her to bed as we had done before, which seemed to keep her settled.

I left about 7pm as the kids were on their own at home, and when I got home I got three texts from cleo: "missing you and the kids" etc.

I called her and it was then that the emotions came flooding out, not wanting to be there, just wanting to come home, and so on. She sounded so upset, and alone, I was tempted to go back. However I did not, and a little while later I spoke with her again, and she was a little more settled.

Earlier in the day Angela from Occupational Therapy had visited us at home, and we admitted to her that we had got cleo upstairs, and that last night we had given her a bath. Angela agreed that we should get an additional bannister fitted, along with a grab rail at the top of the stairs to help cleo on the ascent. I do think that cleo was a little tired after the few days at home, which didn't help the emotional response. Her knee was painful, as we had not used the wheelchair at all; everywhere we went in the house was done on foot, with cleo supported by myself or Sarah.

Together

These lyrics are the words to a song I wrote some time ago. They seemed particularly appropriate tonight.

When the evening comes my love
I’ll be there to comfort you
In the shadows of the darkest night
I’ll hold you close to me and we will always be
Together
Together we will be

When the north wind blows my love
I’ll be there to keep you warm
By the fireside we kiss
I’ll hold you close to me and we will always be
Together
Together we will be

If the snow should come my love
You can look into my eyes
See the burning embers there
I’ll hold you close to me and we will always be
Together
Together we will be.

I don’t care if the people all say it’s wrong
I don’t mind if we stay here all night long

We can share our love
Our lives
Build our castles in the clouds
And when the winter comes again
I’ll hold you close to me and we will always be
Together
Together we will be

Day 38 - Snowed In!!

Today, as the stop press entry stated turned out to be a good one. We were all getting things sorted for cleo to return to the hospital when the ward called us at home. The last couple of days we have had some pretty awful weather, snow and ice. The doctors were concerned about the possibility of problems with cleo transferring from the chair to the car in the snow, and suggested that we wait till tomorrow to return her to the ward.

I certainly didn't need asking twice!

So, what had started as a rather "down" day, because of cleo's impending return to the hospital was suddenly lifted from the doldrums. We had a nice family breakfast, and didn't do much at all till this evening when i bought us a chinese take away and we sat round the dining table to eat.

cleo has always been one for long soaks in very hot baths, and i knew that this was something she had missed very much since her stroke. Now of course its no easy thing to get someone who cannot walk or stand on their own and whose left side is still unable to take any weight, into a bath. However, we determined to give cleo a nice relaxing bath.

So, with some careful planning Sarah and I worked out a method to achieve this, and we managed to get cleo into the bath without too much fuss. It was nice to see her relaxing in the hot water, and i am sure she enjoyed it. Sarah shaved her legs for her, and Hannah washed her mums hair. How we all fitted in the bathroom I am not sure but we did.

Of course there was still the problem of lifting cleo out, but with the bath emptied, me lifting cleo, and Sarah replacing the bath board for cleo to sit on, again we did it without any problem.

The thing about being at home is that we have the time to do all these things, and to persevere with them, whereas in the hospital this is not always the case. Of course we don't have all the hoists and specialist equipment, but what we do have is our need as a family to see cleo happy, and for her to be fulfilled in whatever way is best. It is amazing what a perk a simple thing like a bath can be: she was beaming all over from the moment she was in the water, and continued to smile right up to the time when I got her into bed. All these things too, make cleo feel more "normal" I am sure. If everyone keeps saying you can't do this, or that, then you begin to believe it. We genuinely believe that barriers should not be placed in the way, and if there is even a possibility of achieving something to help the outlook of a patient (in this case cleo, of course) then why not find a way round the problem? We did, and i am sure we will continue to do so as cleos recovery moves ahead.

Stop Press.

Had a phone call from the Hospital this morning as we were getting ready to take cleo back. They had concerns about making transfers from the chair to the car etc. in this weather. It's pretty snowy here, and quite icy too.

Their words: "If you want her to stay till tomorrow or the day after you can"

My thoughts: "What a stupid ********* question."

So cleo is here with us for the day, and depending on the weather we will see what happens tomorrow. I might even treat the family to a chinese take away tonight. If they're good.

Let It Snow

Oh the weather outside is frightful
But the fire is so delightful
And since we've no place to go
Let It Snow! Let It Snow! Let It Snow!
It doesn't show signs of stopping
And I've bought some corn for popping
The lights are turned way down low
Let It Snow! Let It Snow! Let It Snow!
When we finally kiss goodnight
How I'll hate going out in the storm!
But if you'll really hold me tight
All the way home I'll be warm
The fire is slowly dying
And, my dear, we're still goodbying
But as long as you love me so
Let It Snow! Let It Snow! Let It Snow!

Day 37 - You'll Never Walk Alone

I think today was a frustrating day for lots of reasons, but for me the main one is that cleo , as agreed, has to go back to the hospital tomorrow. While I know it's the right thing for her, I really don't want her to go. That of course is a selfish attitude, but one I cannot hide. We are of course still learning how to cope with things, and I would be the first to admit that we are probably not as organised as we ought to be. In time, when cleo is back home for good, i am sure we will get better routines for things, but right now it has been a little haphazard, which in itself creates work, and becomes time consuming.

While cleo is fairly settled having been home for four days, she is still liable to some rather unpredictable emotional responses. Headaches still frighten the hell out of her, with good reason, and last night she had a sort of headache and stiff neck, and she admitted to being scared of having another stroke. Now this is a common reaction, acording to various sites I have read, but nonetheless it is not easy to deal with somebody at that time. What does one say, apart from trying to reassure and comfort, and be strong, even though inside you hate to see them like that?

What if...

During this particular emotional episode, when all the "why me's", and "I am scared" stuff came out, which i had sort of been expecting, cleo then added the one thing I wasn't expecting: through all the tears came " I don't want to die, what will happen to you and the girls if I do?"
I have to say that at this point I wasn't quite sure how to react. What I did was to comfort her, and say that it was not going to happen; however, I then gave her my word of honour that should anything happen God forbid, I would see that the girls were always cared for. cleo not being here is not something I am even prepared to contemplate but if she needs that assurance then it is my place to give it, and of course, give it I will, and my word is my bond.

Tonight, cleo was still frustrated at herself, because she still felt she couldn't do anything without help. I took her into the kitchen, and stood her by the kettle, gave her the cups and she made me a coffee. A little thing, but enough to let her know she can do something, and it proves that once she is a little more adept at walking on her own she can do things for us, and no doubt will in the not too distant future. A nice little moment that was. She smiled a big smile at that.

So the time at home was both successful in terms of finding our feet, if occasionally fraught with emotion. I suppose that was to be expected. Our first venture home that Monday a couple of weeks ago showed us both that it was never going to be easy. However, we are not about to run away from the reality of the situation.

What is that reality? Well it comes down to two things: firstly the sooner that cleo is home the better, subject to successful progress from her physio and occupational therapy. Second, while it won't be easy, it's right for us that we have her here at home, where she is most comfortable, and whatever we have to do (I say we, because I include the girls in that too) to get where we need to for cleo then we will do all that, and more.

Tomorrow we will get her ready to go back, for as short a time as possible of course, and the rounds of hospital visiting starts again, at least for now. That won't be easy, but again, it's a necessary evil. She's home for New year's Eve. I look forward to that.

You'll Never Walk Alone

I will always be by cleo's side to support and help her, and the kids too, so this brilliant song says all that, and more. She will never ever walk alone, whether I am by her side supporting her to stand, or just being with her as she walks by my side. Either way I am proud to say that we are together, forever, and nothing will change that. Love you my cleo.


When you walk
Through a storm
Hold your head, up high
And don't be afraid, of the dark
'Coz at the end of the storm
Is a golden sky
And the sweet silver song
Of the lark

Walk on, through the wind
Walk on, through the rain
Though your dreams be tossed
And blown

Walk on, walk on
With hope, in your heart
And you'll never walk alone
You'll never walk alone

Alone

Walk on, walk on
With hope in your hearts
You'll never walk, alone

Day 36 - Stairway To Heaven

Very often, when a climber is asked why he climbed a difficult mountain, the response is along the lines "Because it was there, I just had to do it...." Many things in our lives become personal goals, and while to others they may seem small and insignificant, to the person whose goal that is, they are driven by some inner strength, and a need to reach the top of their private mountain.

Our private Everest this Christmas is the top of the stairs in our house. Cleo and I, as I have said before, are a team, and very little that we set our mind to do we cannot achieve, within reason. Certain things are very important to us, and our togetherness is paramount: we do not manage well when we are apart, and being together makes us both stronger for that. We have to be close, and our own private domain is our bedroom. The house of course is ours, but we share that with the girls; our bedroom is our private space, and it's where we are closest, and that room is upstairs in the house.

It took us a couple of attempts, but we did it. We found the method to get cleo up the stairs and into the bedroom. Not for any other reason that we both had a need to be close, and sleep in each others arms in "our bed" (a large king sized pine bed, which was the first piece of real furniture we bought after we moved in together). We have a sofa bed downstairs and the plan was always for cleo to sleep there. That really was not going to happen, was it? I don't think so.

I will have to admit this fact now to the care team, even though they thought she was going to remain downstairs; we have negotiated the stairs, safely, and without incident a couple of times, and again this evening, we will retire to our room, and our bed. Sometimes it is important to push ones personal limits, and getting up the stairs tested cleos of course, but, if anyone had seen the smile on her face as we got her into bed upstairs they would have agreed that this was undoubtedly the right decision, for cleo and for her emotional well being. I stand by that, and will defend it to anyone.

We have been quite "normal" today. That for us is the best thing, and while we still have to help cleo move around, it is becoming far less obtrusive than it was earlier as we are all getting accustomed to the way we need to do things for now. Even Sarah took her mum to the toilet while I was out for a while, and I am sure that will have given them confidence in each other, which is good.

Stairway To Heaven

Not totally relevant words, but the fact we got cleo upstairs sort of screamed at me that we had to have these words today: good song too. The words say "she's buying a stairway to heaven..." I cannot possibly put a price on that today, to have held my cleo in my arms asleep, last night.

"There's a lady who's sure all that glitters is gold
And she's buying a stairway to heaven
When she gets there she knows, if the stores are all closed
With a word she can get what she came for
Ooh, ooh, and she's buying a stairway to heaven

There's a sign on the wall but she wants to be sure
'Cause you know sometimes words have two meanings
In a tree by the brook, there's a songbird who sings
Sometimes all of our thoughts are misgiven
Ooh, it makes me wonder
Ooh, it makes me wonder

There's a feeling I get when I look to the west
And my spirit is crying for leaving
In my thoughts I have seen rings of smoke through the trees
And the voices of those who stand looking
Ooh, it makes me wonder
Ooh, it really makes me wonder

And it's whispered that soon if we all call the tune
Then the piper will lead us to reason
And a new day will dawn for those who stand long
And the forest will echo with laughter

If there's a bustle in your hedgerow, don't be alarmed now,
It's just a spring clean for the May Queen
Yes, there are two paths you can go by, but in the long run
There's still time to change the road you're on
And it makes me wonder

Your head is humming and it won't go, in case you don't know
The piper's calling you to join him
Dear lady, can you hear the wind blow, and did you know
Your stairway lies on the whispering wind

And as we wind on down the road
Our shadows taller than our soul
There walks a lady we all know
Who shines white light and wants to show
How everything still turns to gold
And if you listen very hard
The tune will come to you at last
When all are one and one is all
To be a rock and not to roll

And she's buying the stairway to heaven" Led Zeppelin

Day 35 - Christmas at Home

Christmas Day! At home as it should be.

Christmas day marked exactly 5 weeks since cleo had her stroke. To be honest after such a dense stroke it's amazing that she has made such progress to be allowed home. Three weeks ago when we were saying we would be better off at home, we didn't know then what we do now. This is not easy, and I say that not because I don't want to do it, but because we just didn't realise what is involved in moving around, and doing all the things which we all take for granted.

The girls had stayed at their father's last night and were coming home at lunchtime. This was good because it gave cleo and I some time to get ourselves organised this morning. We sat in the kitchen and had breakfast; boiled egg, toast, and tea. The last time we did that was about 30 minutes before she had the stroke.

The next hurdle to overcome was getting cleo showered. I had bought a bath board: a simple piece of equipment like a bench seat that fits over the bath allowing the user to sit in relative comfort while taking a shower. We managed to manoeuvre cleo onto this, and got her showered and hair washed. It is worth noting that every single movement needs to be planned at the moment; in time of course once we have experience of each move we will know how to do them, but for now it's very much about finding out. There will be mistakes, I think we both know that, but we are a good team, and determined that whatever we have to overcome we will.

I feel frustrated at times because i don't like having deal with "new" things unless I am practised: especially when the result of a mistake might be cleo getting hurt. Unfortunately, it is impossible to practise some of these things, and we just have to do it by trial and error. Finding the best way is not always obvious, and it is all too easy to miss something, or not remember something.

Cleo is trying so hard, and I hope that I can make her life as easy as possible, without too many traumatic moments because i have forgotten or missed something. She has to learn that if she needs something, she must ask; why should she go without a cup of tea, or whatever, just because she cannot get it herself?

So, breakfasted, dressed and sorted we started to think about cooking Christmas Dinner. The turkey was on and all the veggies prepared, and by the time the girls got home dinner was virtually ready. Before we ate we spent a nice hour opening presents, and then all sat round the kitchen table to eat. Dinner was good. Cleo promised me that as I had cooked it this year she would return the favour next year.

Done Deal girl!

Emotionally charged...

I find right now that even the smallest thing sets my emotions off: a word, a song, even a thought. I think cleo is the same too and we have these moments at present where almost without warning one or both of us ends up in tears over seemingly the smallest thing. Once one starts it's guaranteed that the other will soon follow, and in all sorts of odd places we end up hanging onto each other in floods of tears, even in the toilet! I am not proud, I can cry anywhere!

No doubt there are many reasons for this, some of which are different for each of us, but with the same result. For cleo there is some reaction to the trauma of the stroke (this is a known fact, many people suffer some depression after stroke) and frustration too. She persistently asks herself the question "Why Me?". She also worries about me doing too much, and getting tired, and no doubt is frustrated by not being able to do things herself. For my part I hate to see her struggling like she is, and I am afraid that she might accidentally hurt herself, or that I might do something wrong.

This morning she alluded to the idea that this might all be a bad dream, and next week she would be back to normal and everything would return to how it was five weeks ago. That of course is not to be. Mind you, Bobby Ewing came out the shower didn't he?.....

I would like to mention here, on Christmas day, all the messages and good wishes from all our friends and family. The strength you have given cleo is amazing, and we both thank you all very much.

We too would like like to wish everyone we know a great Christmas, and a propserous and very happy New Year for 2006.

Day 34 - Home at Last

Well, we did it, and without too many dramas either. This morning, I went to the hospital and collected cleo, bringing her home to stay for four days; so it's Christmas at home!!

It really is amazing how much stuff one person can accumulate in just over 4 weeks: three trips to the car and a full back seat of things that cleo had at the hospital before we could leave, to get her home!

Having arrived safely, and being on our own (the girls are at their fathers till tomorrow) we have had a little time to reflect, and adjust at our pace to how we might do things. We will need to get organised, but that will come in time. This afternoon, as I had not slept since yesterday we just got into bed together, something we have not done for 5 weeks, and dozed the afternoon away. Just being close is enough, knowing we have the time.

Right now we have ordered in pizza for dinner, as the next couple of days will be all turkey and stuffing, so pizza was a good choice, that saved cooking too.

WE are sat here, right where cleo had her stroke on the 21st November, chatting, as we did that monday, and talking with friends on the pc's.

I am just happy that i have cleo here, and that a semblance of normality has returned to this house: and i am especially grateful that i do not have to drag myself to that accursed hospital over the holidays.

From This Moment

Shania Twain said it all in this great song.

(I just swear that I'll aways be there.
I'd give anything and everything and I will always care.
Through weakness and strength, happiness and sorrow,
for better or worse, I will love you with
every beat of my heart.)

From this moment life has begun
From this moment you are the one
Right beside you is where I belong
From this moment on

From this moment I have been blessed
I live only for your happiness
And for your love I'd give my last breath
From this moment on

I give my hand to you with all my heart
Can't wait to live my life with you, can't wait to start
You and I will never be apart
My dreams came true because of you

From this moment as long as I live
I will love you, I promise you this
There is nothing I wouldn't give
From this moment on

You're the reason I believe in love
And you're the answer to my prayers from up above
All we need is just the two of us
My dreams came true because of you

From this moment as long as I live
I will love you, I promise you this
There is nothing I wouldn't give
From this moment
I will love you as long as I live
From this moment on

Day 33 - The Longest Day

The post for Friday, which I am writing now on saturday morning at 0900 due to a failed internet connection at work, has been one of the longest days of my life.

Took Hannah to see cleo at lunchtime, as I had to leave for work at 4pm. cleo was in fine fettle, and we were expecting to get her home sometime Saturday afternoon. When I checked with the Sister on the ward she explained that there was no reason why cleo could not come home in the morning.

So, to run a day and a half together, I am at home now, after driving from my night's work, and as soon as this entry is made I shall go to the hospital to collect my dear cleo for the Christmas Holidays. I cannot wait.

All night I have been thinking of nothing else, and cleo was awake early too. She texted me at about 0530 this morning. Awake and waiting!

cleo has just sent me a text that says ""washed, dressed, and pills sorted"

So without further ado, I shall get to the hospital, and bring her home. I know it's only for four days, but after nearly 5 weeks, those four days will be so good.

I shall report the days events tonight.

Day 32 - Spaghetti and Sauce..at home!

Christmas draws ever nearer, and so does the moment when cleo will come home for four days. I have to say i can't wait, I need to spend some time with her. I am starved of her love, and i need to be close to her, not for an hour or two, but for days, weeks even. I have almost forgotten how wonderful it feels to be close to her, to smell her hair, to hold her, and to feel her incredible warmth and affection.

Today, cleo had her physiotherapy in the morning, which meant that there was no need to be around the ward at any time this afternoon. So, at about three pm, we were all sitting in cleos room, and I saw Matron. I said "I am going to take cleo home for a few hours if that's ok" She said "Good idea".

So, all four of us "escaped" from the hospital about 3.30pm and came home. We had no specific plans, but once home cleo said she would like some spaghetti. So, I made organic spaghetti, with a nice organic tomato and mushroom sauce, which we all enjoyed. That was probably the best meal cleo has eaten since the stroke; hospital food is ok I guess, but its not home cooked, and its pretty boring too.

Now, at the moment, the few times that cleo has come home even for those short times, it can be quite emotional for both of us. For her because it's where she really wants to be, and for me because i worry so much about her, and i don't want my inexperience in dealing with someone who has difficulties such as cleo does right now to cause her any harm. I know that she is trying so hard to prove she can do things, like walk a few steps, or stand on her own, and when she does i am afraid that something untoward might happen, like her falling and hurting herself. I have to admit that today, i shouted at her, because i felt she was trying to do too much, as we were walking into the kitchen. This caused her to cry, because she is trying so hard and I should not have snapped at her. We both ended up in tears. I suppose these things happen, but they don't make it any easier, that's for sure.

I know that when cleo is home over Christmas we will have the time alone to become more accustomed to doing things at a pace which suits us, and we will find ways to get over those obstacles. She is so precious to me, that i cannot bear the thought of anything else happening to her through my not doing something, or even by accident. If that were the case, i could never forgive myself.

Do You Regret...?

Once dinner was over, and we had loaded some of cleo's favourite music onto the new laptop for her to take back with her we got her back in the car, leaving the girls at home, and set off to return her to the hospital. On the way, cleo asked me an odd question: "Do you regret calling 999 for the ambulance that day?" "What else would I have done?" I asked.

She said that if I had not, she might not have spent the last month in the hospital, but could have got better at home. I am not sure what brought this question up, but i suggested that there was no way that could have happened. Thinking back over those first few days after the stroke when she could not move, hardly speak, and couldn't even swallow properly I pointed out that there was no chance of her making the recovery she had if she were at home.

I am not sure quite why I have related this conversation but as this blog is an attempt to faithfully report cleos Road to Recovery it seemed that it was important enough for her to have considered it, so, it's here.

Those Nails
As I reported yesterday cleo had her nails done yesterday. While she was at home tonight I took a quick picture, and here, for those interested are those same shooting star nails.

They have certainly caused comments at the hospital. All the nurses seem to like them, and cleo enjoys the fact that people keep coming up to her and saying "Can I see those nails I have heard about?"

Right Here Waiting

written by Richard Marx

Oceans apart day after day
And I slowly go insane
I hear your voice on the line
But it doesn't stop the pain

If I see you next to never
How can we say forever

Wherever you go
Whatever you do
I will be right here waiting for you
Whatever it takes
Or how my heart breaks
I will be right here waiting for you

I took for granted, all the times
That I thought would last somehow
I hear the laughter, I taste the tears
But I can't get near you now

Oh, can't you see it baby
You've got me goin' crazy

Wherever you go
Whatever you do
I will be right here waiting for you
Whatever it takes
Or how my heart breaks
I will be right here waiting for you

I wonder how we can survive
This romance
But in the end if I'm with you
I'll take the chance

Wherever you go
Whatever you do
I will be right here waiting for you
Whatever it takes
Or how my heart breaks
I will be right here waiting for you
Waiting for you

Day 31 - Wishing on a Star

Today was a very big day for cleo, and us too. I had arranged for her to have her hair cut and have new nails fitted, in a local hair/nail bar.

So, it was an early arrival at the hospital at 10am to collect cleo, and bring her home for a cup of tea before going to the hairdressers. We are still not good at getting her to and from the car, and I think I need to get a little more tuition from james, the physio, about the best way to support cleo when she is walking or standing.

However, we arrived at the hairdressers, and they first of all cut her hair, making it far tidier than it was, as it was getting a bit overgrown! Then, into the nail bar and the girl there, I have to say was brilliant! Not only did she do a great job of the nails, but she engaged cleo in some 2 hours of chat and coversation, which i know that cleo appreciated very much.

Cleo wanted something rather seasonal on her new nail extensions, and chose deep red with gold stars. These turned out to be three shooting stars on each nail: each one a work of art i have to say. Watching it done it is quite a job: layer on layer of colour and a real artistic touch putting the stars on.

She pointed out that for each shooting star cleo had a wish, so it was three wishes for each nail! That'll keep her going into next year!

After the nail bar it was home for lunch, and a relaxing few hours at home, while the girls had put up the decorations, and dressed the tree. Suddenly it all felt a bit more like Christmas was coming!

Although cleo is still rather unsteady, at least between us we can get her to take a few steps, and that certainly makes moving around the house easier. What i did see today was that as soon as cleo came into the house, our house, she relaxed: at home you can be yourself, you dont have to be on your guard, and you have nothing to prove. As I have said so many times, we are happy in each other's company, and when we are together, nothing else matters.

I still find it a strain having cleo here, worrying about her being ok, and her not hurting herself or falling over. With time, and our teamwork that will go away, and we will become better accustomed to dealing with the obstacles.

It Must Be Love

For those "oldies" among us, this song, originally by Labi Siffre says what I feel about cleo

I never thought I'd miss you
Half as much as I do
And I never thought I'd feel this way
The way I feel
About you
As soon as I wake up
Every night, every day
I know that it's you I need
To take the blues away

It must be love, love, love
It must be love, love, love
Nothing more, nothing less
Love is the best

How can it be that we can
Say so much without words?
Bless you and bless me
Bless the bees
And the birds
I've got to be near you
Every night, every day
I couldn't be happy
Any other way

It must be love, love, love
It must be love, love, love
Nothing more, nothing less
Love is the best

As soon as I wake up
Every night, every day
I know that it's you I need
To take the blues away

It must be love, love, love
It must be love, love, love
Nothing more, nothing less
Love is the best

It must be love, love, love..

Day 30 - Making Plans

Today, the hospital sort of came to me.

We had what is known as an access visit by members of the care team, along with cleo, and a technician. The purpose of this was to look at the inherent problems (if any) that may be encountered when cleo comes home for 4 days at Christmas.

They duly arrived, and as we found last week, it is nigh on impossible to get the chair, with cleo sitting on it, through the front door, and into our lounge. But, things are different from last week, and cleo can stand now, so....out the chair she pops, and steps through the door, with help, but she did it.

We then went through the best way to get her into the bathroom, which means negotiating a step, but of course because she can actually take a few steps now, as long as she is careful, and someone is there to help, she can do that.

The progress she has made is remarkable: and while her paralysis is still fairly evident, she is beginning to get a little control of her leg, and whereas I could see many problems with being in the house at Christmas after she came home last week, now I don't. We will manage very well.

So, to help her negotiation of the front door, and the bathroom, the attending technician fitted grabrails to the front door frame, and the bathroom door. We don't want to make too many alterations of course because otherwise one becomes too dependant on these, and our aim is for cleo not to need them, eventually.

Hannah has 'flu, and is quite poorly tonight, tucked up in bed with a temperature, and feeling very sorry for herself. I hope that is all gone by Christmas. Being eleven and sick at Christmas doesn't really work does it? I am sure she will be fine. Presents are good medicine.

This afternoon after cleo had gone back with the access team, we visited as usual; although because hannah wasn't feeling too well, i brought the girls home early, and returned to spend the last couple of hours with cleo on my own. Yet again, it was good just to be in each other's company, and I put her to bed before I left, getting her settled comfortably, and not needing to wait for the ward staff to do this.

Tomorrow I am taking cleo to the hairdresser, and she is going to get pampered a bit; hair, nails etc, which I hope will do her a power of good before Christmas.

I Want To Hold Your Hand
(Lennon/McCartney)

Oh yeah, I'll tell you something,
I think you'll understand.
When I'll say that something
I want to hold your hand,
I want to hold your hand,
I want to hold your hand.

Oh please, say to me
You'll let me be your man
And please, say to me
You'll let me hold your hand.
Now let me hold your hand,
I want to hold your hand.

And when I touch you I feel happy inside.
It's such a feeling that my love
I can't hide, I can't hide, I can't hide.

Yeah, you've got that something,
I think you'll understand.
When I'll say that something
I want to hold your hand,
I want to hold your hand,
I want to hold your hand.

And when I touch you I feel happy inside.
It's such a feeling that my love
I can't hide, I can't hide, I can't hide.

Yeh, you've got that something,
I think you'll understand.
When I'll feel that something
I want to hold your hand,
I want to hold your hand,
I want to hold your hand.

Day 29 - Dancing Santas and Dorsiflexion

I am going to begin this entry with a quote:

"I will persist until I succeed. Always will I take another step. If that is of no avail I will take another, and yet another. In truth, one step at a time is not too difficult.... I know that small attempts, repeated, will complete any undertaking." Og Mandino


In those few words is the essence of my cleo. Today she took a huge stride forward, during her physiotherapy session. She walked a few steps without support. Now those steps were not perfect by any means, and the effort that it took was enormous, but, even though there was always the chance she might lose her balance, she actually did it, without help.

I cannot say how overjoyed I was for her.

Prior to this James had found a way to create a spontaneous movement in the muscles of her left foot too, which hitherto had refused to co-operate. Laying on her back, James had asked her to lift her left knee towards chest, thereby lifting her left foot off the bed. At the moment that the foot lifted it twitched. This had not happened before, so this too is an improvement.

James got pretty excited at this, and tried to encourage movement at the ankle. There are four types of movement that happen at the ankle joint.

• plantarflexion: push the foot downwards against resistance
• dorsiflexion: pull the foot upwards towards you against resistance
• eversion: pushing against resistance outwards
• inversion: push against a resistance inwards

The movement which cleo sems to have right now is dorsiflexion. However, this means that the brain is starting to "fire" (in medical terms to recruit ) a muscle group. This is a learning process. The damage that may have been caused by the stroke creates a "loss" of this naturally learned activity, and the aim of physiotherapy in this instance is to allow the patient to re-learn that lost faculty.

All this is good news, and while it is a small advance it also represents a major leap in the right direction because it indicates that the ability to recruit those muscles is still there.

Also during the physio James wanted cleo to do some standing and balance exercise. She stood, and was pretty stable too, but after a short while she gets a woble in her leg, and this is because she does not shift the weight correctly from one foot to the other, and while james was explaining this, she was copying him, which resulted in her sort of dancing on the spot as she wiggled her hips from one side to the other. Remember those dancing santa toys that were all the rage a few years ago? Well, that's cleo, a dancing santa with feet firmly planted, and wiggly knees and hips.

Cause and effect...

There is a man on the same ward as cleo who seems to wander round the place on the middle of the night. He is quite old, and tends to lose his trousers while on walkabout!

For the last couple of nights he has wandered into the room where cleo is, and the staff just don't seem to know he is up and wandering about. He is probably harmless, but I am mindful of the fact that cleo cannot get out of bed that easily without help.

I did say that I would mention her concerns to the Sister, but cleo asked me to wait till tomorrow, to which I agreed, but if it happens again I am going to say something.

The doctors have prescribed iron tablets for cleo , saying that her iron levels are low, which of course can lead to many problems including anaemia. We don't believe this is from before, but having had a month eating their vegetarian dishes, which are (mostly) particularly unappetising it seems that the iron supplement is needed. Now, taking ferrous sulphate is all well and good, but it can create constipation. When the doctor spoke to her today, she mentioned this and he said "Well we can give you something for that".

Seems to me that what they should be giving cleo is a balanced diet, not iron tablets, and then a laxative to counteract the effects. They are dealing with the effect, and not the cause.

Day 28 - One Long Month

Rather than write the same as yesterday because that is how this weekend has been, I thought I would take this opportunity to talk about a few things that I have not yet touched on in these posts.

Is it really a month? Sometimes I think how fast it has gone, and at other times it seems like an age since that awful morning in November when cleo had her stroke. There is no doubt that an incident such as this is nothing short of a lifechanging moment. Our lives, and in that I include cleo, me, and the girls, will likely never be the same. The plans we made and the things we have promised to do with, and for each other, are probably no longer valid. Of course there will be new plans and promises, and many new experiences for us all.

With us whatever else comes, there is the constant of our love. I know that cleo has doubted on several occasions this last month whether she will ever be quite the same, in terms of our relationship, perhaps wondering whether i will still look on her as the same person. I can understand those fears, but she needs not worry. She is still my soulmate, and we are probably closer now than we were a month ago. There can never be anyone else for me, and that will never change.

I should mention cleo's daughters here too. They have been fantastic. At 17 and 11 years old to have their mother taken seriously ill, and to cope in the way they have is testament to their maturity and the way that cleo has brought them up. They have obviously been frightened for their mum, and there have been times when i know they have wished this never happened. However they have carried opn with their lives, and kept their school work together, not using this as an excuse. Hannah for example makes sure I take my blood pressure tablets every day, and Sarah is currently feeling the pressure of taking her driving test tomorrow, feeling that she may need to be able drive her mum about for a while at least, and if she fails then she will have let us down. Not at all.

Sarah has also agreed to take on the responsibility of staying at the house with her mum when I am at work, and that in itself is a big decision. There have been some questions raised by the care team about whether Sarah is up to that, which I know rather upset Sarah. I also know that she is more than capable, and I have no qualms about leaving cleo with her when I have to go to work. I will also make it perfectly clear to anyone who questions that decision that we as a family are ultimately responsible and Sarah WILL look after her mum, and will do a great job too.

For those who have read this diary through the last four weeks there have, as you know, been times when we have had to question the clinical decisions, and the level of some of the care which has been provided for cleo. Now, overall I must say that this is not the norm; the care and attention is mostly excellent, but if one accepts that the standards should be as high as they are, we also have a right to question those areas which fall below that high standard too. This we have done, and it seems that it has improved certain areas that in my opinion were less than perfect. My sole concern is for cleo's well being, but if my pointing out something on her behalf improves the lot of others too, then so much the better.

It is unusual these days for many people to actually spend 4 weeks in hospital, as current practise seems to favour getting patients out of the hospital, and back home, where they are more comfortable. It is also important that cleo gets as much benefit as possible from the care team before coming home. Their criteria is that while a patient is improving as a result if the intensive daily therapy they can offer then hospital is the place to be, and discharge is really only given when such improvements that can be achieved are complete. They say that because of cleo's fighting quality, and her age (50 is relatively young of course for a stroke) she has great potential to recover which is as yet unfulfilled; the downside of this is the stay in hospital becomes extended. It's a trade off i suppose, although cleo is more than a little stir crazy right now.

And what of me? well I am a little tired, but I will continue to do whatever is needed to make cleo's and the girl's lives as easy, and as ordered as possible. I am looking forward to Christmas Eve, and bringing cleo home, if only for a few days, so we can spend some time together, in private, and not have to be parted because visiting has finished. Having her at home for Christmas is the best present I could have, and while having to return to the hospital after the holiday may be more difficult, it can be looked upon as a necessary "evil" which we may have to endure for a few weeks longer.

Another important part of the recovery that cleo has achieved is down to family and friends, and their unfailing support and encouragement. We have been inundated with good wishes, cards and e-mails, along with phone calls and even visits at the hospital. When we see that level of support, some of it from people we only know from the internet, and who we have never met, it gives huge strength, and this can only help to promote recovery for cleo. To those friends and family we want to say a big big Thank You.

There have been many highs and lows this last month, many tears, and laughter too, and I genuinely believe that this family has become closer through this episode. We don't know yet what the next few weeks and months will bring, and what level of recovery cleo will ultimately make, but what i do know, is that she will get the best of everything she needs. There will no doubt be more highs and lows in the weeks to come, but the love we all have will get us through this.

Day 27 - Patience...

Another quiet day, with little to do, but wait for next week to come. Along with this because of my work cleo and I had nowhere near enough time together this afternoon. Having got a few hours sleep this morning after working all night I got to the hospital at 3pm, and had to leave for work at 4.15. We do have some extra time to look forward to this week, as i am in on Monday morning with O/t, and we are all at the house on Tuesday for an access visit, and I am taking cleo to the hairdressers on Wednesday. That still does not make up for a weekend where we have not seen much of each other. Force of circumstance has dictated that of course, but still its not enough.

Patience I guess is a virtue, but that still doesn't make us want to see each other any less.

cleo was engrossed today in the new laptop I bought her, and this will not only give her something to do, but will help, over time to improve dexterity, and especially when her left hand starts working again. We went and sat in the restaurant and had a quiet coffee; just being together is enough for us. When we are in each other's company little else matters.

So, today and tomorrow will be quiet days, in advance of next week which will be busy, and which will hopefully set the course and tone for Christmas at home. Nothing will get in the way of that. James, as part of that yesterday had cleo working on up and down a step, and he will continue that next week. At present she doesn't have that much control when lifting her left foot up a step, but I am sure that will come. As well as that he is working on stimulating her hand and arm, which up to now show little if any movement at all. Again, we must wait and see.

Sad Songs (Say So Much)

Music by elton john
Lyrics by bernie taupin

Guess there are times when we all need to share a little pain
And ironing out the rough spots
Is the hardest part when memories remain
And it's times like these when we all need to hear the radio
'cause from the lips of some old singer
We can share the troubles we already know

Turn them on, turn them on
Turn on those sad songs
When all hope is gone
Why don't you tune in and turn them on

They reach into your room
Just feel their gentle touch
When all hope is gone
Sad songs say so much

If someone else is suffering enough to write it down
When every single word makes sense
Then it's easier to have those songs around
The kick inside is in the line that finally gets to you
And it feels so good to hurt so bad
And suffer just enough to sing the blues
Sad songs, they say
Sad songs, they say
Sad songs, they say
Sad songs, they say so much

Day 26 - So much to do...so little time

Today has been a complete nightmare.

Life, as they say, must go on, and it just happened to be one of those days when everything needed doing. That in itself would not have been too bad, except that cleo was having a bad day emotionally. She started off well enough, having a shower (standing of course takes a lot right now, and as her stability is a little suspect there needs to be one person in attendance during the shower) , and I popped to the hospital at about 1pm before getting the kids for a flying visit. Although we didnt have too much time she was ok when I left.

I had spent the morning doing bits and pieces and all the things which cleo would normally have well organised: washing, ironing, hoovering, bedmaking, and so on! Then it was home to get the children and back to the hospital. Hannah was staying till 6pm, being collected by her dad, but Sarah is away this weekend having a 2 day intensive driving course before she takes her driving test on Monday. It just happens that the weekend course is with her uncle, who runs a driving school, but over in Surrey, and so I had to meet him with her, and then head off to work.

I could really do without work this weekend, but unfortunately the bills need paying amd Christmas looms, so no choice! Anyway, that meant that cleo hardly saw any of me or sarah today, and as we were driving up the M2 I got a text: "feeling really depressed". There then followed several text exchanges and it seems that the lady in the bed next to her is going home soon, that didn't help, allied to the fact i am working, which means less time at the hospital, and so it becomes a spiral. I spoke to her a couple of times and there were tears too. This hurts me so much because I feel powerless to do anything about it. I just want to pick her up and bring her home; once home she will be fine. Untill then I guess we have to deal with this, although that is not so easy. Of course as Christmas draws nearer the days seem to drag even more for cleo, she just needs to be at home, with family around her, and I know she is scared that something might stop her being home next weekend. I won't let that happen of course, but even so, knowing what she's like, a natural worrier, she won't relax until we close that door on the world on Christmas Eve.

Consent Exchanged

By way of a change I include a poem tonight, in the classic sonnet form like many written by Shakespeare. This one written by me.

This all-consuming love, which keeps us here
Consent exchanged with ne'er a spoken word
A mutual vision of the life we want to share
Ambition set, that will not be deterred.
And like the blacksmith working with his tools
Each day we forge a stronger steel-like bond
Our lives become enriched with dazzling jewels
And further yet, we still must go beyond.
The heights of yesterday we will exceed
And ever higher make the power exchange
Our promise this to each we will succeed
But only for the better will we change
And like the heated metal takes its form
Our power exchange is every day reborn.

Day 25 - There is a world out there

Its funny how 24 hours, and the simplest of things can make such a difference. As I said, last night cleo was getting all emotional prior to the end of visiting. Well, before we left we put her to bed, rather than letting the nurses do it; so she was all tucked in before we left.

Tonight, we did the same, and she texted me after we got home to say she was feeling far more comfortable with that, and it made her feel more relaxed. So, we need to do that as much as we can. although it won't happen over the weekend because I am working, as usual, and need to leave about 4.30pm each day.

I got to the hospital about 1pm today, and cleo said she had a headache. I have to say headaches are scary right now, even this one, which was one of those fuzzy headaches caused by too much heat and not enough fresh air. cleo admitted that she hates any kind of headache at present, which of course is understandable. She was given some painkillers, and I took her for a wander through the hospital, ending up at the coffe bar by the main doors. Their coffee is quite good, and we sat and watched the comings and goings for half an hour, while we drank the coffee. We then moved to the entranceway, where cleo got some much needed fresh air, and I think this helped to relieve the headache. As I pushed her into the entrance hall she looked through the glass, and remarked "Ahhhh there is a world out there after all". It is all too easy to become insular in a hospital ward, especially when, like cleo you have been there for nearly 4 weeks. As much as i can, I have tried to keep cleo involved in home life, obviously with the kids as well. But I make a point of asking her things, that she would normally do in the house, and I took some Christmas cards for her to write, which she did. She cannot let the real world escape her, or when she does come out, the acclimatisation will be even more difficult.

Eventually we wandered back to the ward, and I left to collect the girls. We had decided that yesterdays arrangement of eating in the restaurant worked quite well (saved having to cook dinner when we got home, which is too late really) and so we did the same tonight. I had bought a puzzle book as we had fun last night completing a crossword, and this evening we did the same. It's funny, but when we are together out of the ward, we still all manage to laugh and that is good. So, dinner over, and cleo returned to the ward, and put to bed, me and the girls came home. I think we were all relieved that cleo was more relaxed about the end of visiting, and she was laughing as we left.

Although I haven't mentioned it cleo has been continuing her physio every day, and James is working on some specific targets for Christmas at home. Some standing exercises, to help her stability, and improving her movements into and out of the chair, bed and toilet is also important. James also asked her to start trying to stimulate her hand, by simply rubbing it, as I think he has concerns that there is no response there yet. Even so, I guess its too early to make a judgement on that one, so I won't.

Back On My Feet Again

The Michael Bolton song ought to become cleos anthem really.

Gonna break these chains around me
Gonna learn to fly again
May be hard, may be hard
But I'll do it
When I'm back on my feet again

Soon these tears will all be dryin'
Soon these eyes will see the sun
Might take time, might take time
But I'll see it
When I'm back on my feet again

CHORUS
When I'm back on my feet again
I'll walk proud down this street again
And they'll all look at me again
And they'll see that I'm strong

Gonna hear the children laughing
Gonna hear the voices sing
Won't be long, won't be long
Till I hear them
When I'm back on my feet again

Gonna feel the sweet light of heaven
Shining down its light on me
One sweet day, one sweet day
I will feel it
When I'm back on my feet again

CHORUS

And I'm not gonna crawl again
I will learn to stand tall again
No I'm not gonna fall again
Cos I'll learn to be strong

Soon these tears will all be dryin'
Soon these eyes will see the sun
Won't be long, won't be long
Till I see it
When I'm back on my feet again
When I'm back on my feet again
I'll be back on my feet again

Day 24 - Night and Day

I was up early today. I had arranged to attend the hospital at 9.30 to help OT with cleos getting washed and dressed. In the event when I arrived she was waiting, and in good spirits. She seems to cope well with the days, because there are people around her and there is always something going on, whether it be OT, or physiotherapy, doctors rounds, or visiting.

Nights however are another matter entirely. She has on several occasions admitted that she can cope with the days, but not the nights. I think this is for two reasons. Firstly, that as the end of visiting arrives, the fact that her family are having to leave her alone, and second that the nights are very long, and very boring.

Of course there is little to be done about this, except try to give cleo as much encouragement and focus as we can. Tonight was a good example. I spent 3 hours there this morning; after the dressing practise, we escaped from the ward, and wandered off to a different part of the hospital where we bought sausage rolls and coffee, and just sat at the main entrance, watching the people come and go. When we are together cleo seems to be fine. I really wish i could stay there all the time. Alas that cannot happen of course.

I came home about lunchtime, and on the way managed to arrange a manicure, and hair appointment for next week for her. Hopefully this will give her something to look forward to. I will take her to the hairdressers next Wednesday which will serve to get her out for a couple of hours, and hopefully make her feel better once her nails and hair are done nicely.

Once the kids were home from school we had arranged to visit and decided we would eat in the restaurant together, rather than make dinner at home. We sat for ages, eating, laughing and joking, and doing a crossword. It was a nice family evening.

Suddenly for no reason at about 6.30, as we are talking about the girls homework, and bedtimes, cleo spontaneously burst into tears. Every day at about that time she gets very emotional because the night looms ahead, and the children are soon going to leave. She misses them desperately, and while they put on a brave face, I know they miss her too.

It hurts me to see her like that, uncontrollable tears, sobbing, and sort of asking "why me?".

While the family is there she can manage, but as soon as we leave I think she gets very low. The nights are very long there too, and at the moment she is not too comfortable sleeping, because she hasn't mastered the art of turning over, so has to sleep on her back, and that hurts her spine, so consequently she wakes up quite frequently. This evening, before we left, she asked us to help her undress, and get her nightclothes on. Very often she has to wait for ages for a staff member to do this for her, so it makes sense that we do it.

As we leave, and while driving home which only takes about 15 minutes I get a couple of texts from her, and four or five more in the next half hour. Each one I read tells me how much she misses us, and in one particular text she asked me to say goodnight to "her girls". As a mother, it must be so hard for her: Sarah and Hannah are her life, and right now, that contact which we all have with our children is not there. She sees her kids for a couple or three hours in the evening. It must be awful, and I feel so bad for her, that we can't change this, or find a way round it.

As for me, I just want to bring her home, and hold her in my arms all night, to let her sleep in peace, safe, and without any cares at all. That will happen on Christmas eve, and I just can't wait.

Songbird

I try to quote lyrics that have a meaning, for cleo and I. This is such a beautiful song, and they sort of say what I am feeling right now. Christine McVie, of Fleetwood Mac wrote this and she sings it like no-one else.

For you, there'll be no more crying,
For you, the sun will be shining,
And I feel that when I'm with you,
It's alright, I know it's right

To you, I'll give the world
to you, I'll never be cold
'Cause I feel that when I'm with you,
It's alright, I know it's right.

And the songbirds are singing,
Like they know the score,
And I love you, I love you, I love you,
Like never before.

And I wish you all the love in the world,
But most of all, I wish it from myself.

And the songbirds keep singing,
Like they know the score,
And I love you, I love you, I love you,
Like never before, like never before.

Day 23 - Reality Check

Yesterday's time at home with cleo was wonderful. However it also underlined to us both the inherent problems to be faced with having wheelchairs, lack of space, and such like in a "normal" house.

Cleo called me this morning, and she said she had been thinking about this and had come to the conclusion that there were things neither of us had thought about, and that she needed to be sure that I was comfortable with her being at home, in terms of her safety and mobility. Of course given the chance I would have her home right now, but the downside of that would be that we would all work ourselves into a frazzle, and cleo would not benefit from the continued therapy she gets at the hospital. She has admitted to herself that she needs to get as much improvement as possible from that therapy before coming home. While of course therapy is available at home, and we will have that, it is far less specialised than what she gets now. So she accepts she may have to stay at the hospital for a couple of weeks after Christmas, at least, to enable the team there to give as much as they can before she makes the big move home.

Further to that, and a conversation she had with OT this morning we have arranged a full access visit, to the house next week in preparation for Christmas. This will include a technician to add bars and handles where necessary, and any other temporary adaptations that they feel may be helpful.

What we don't want though is too many adaptations, because we don't plan for cleo to be in the chair too long, or become dependent on them. There has to be a balance between that, and making her life easier, and most important safer.

We agreed on the phone that today I would wait till the girls got home before coming to the hospital, because cleo was seeing James at 3pm anyway. We arrived at 4.30, and spent a very pleasant hour and a half in the cafe with tea and scones. cleo seemed to be more realistic about her situation, and because of that was also more relaxed, and in good humour. As we often do, we laughed, with the kids too, and the whole visit was a good one.

Matron said that cleo needs to be "pampered" a little. Who am I to argue? I will arrange a hairdressers appointment, and manicurist for her and take her to get a bit of a makeover in the next few days.

All coming back to me now...

I think today was a turning point in cleo's Road to Recovery: the realisation that while our lives may have changed forever, that we should be realistic about that, not accepting, but prepared to be sensible about where we go from here. I have to say that I am proud she has seen that, because it will make our fight together so much more in tune with each other. To get back to what we had before will be a long and arduous process, but the memories will come back and there is a song that sums up the idea quite well...as sung by Celine Dion.

There were nights when the wind was so cold
That my body froze in bed
If I just listened to it
Right outside the window

There were days when the sun was so cruel
That all the tears turned to dust
And I just knew my eyes were
Drying up forever

I finished crying in the instant that you left
And I can't remember where or when or how
And I banished every memory you and I had ever made

But when you touch me like this
And you hold me like that
I just have to admit
That it's all coming back to me
When I touch you like this
And I hold you like that
It's so hard to believe but
It's all coming back to me
(It's all coming back, it's all coming back to me now)

There were moments of gold
And there were flashes of light
There were things I'd never do again
But then they'd always seemed right
There were nights of endless pleasure
It was more than any laws allow
Baby Baby

If I kiss you like this
And if you whisper like that
It was lost long ago
But it's all coming back to me
If you want me like this
And if you need me like that
It was dead long ago
But it's all coming back to me
It's so hard to resist
And it's all coming back to me
I can barely recall
But it's all coming back to me now
But it's all coming back

There were those empty threats and hollow lies
And whenever you tried to hurt me
I just hurt you even worse
And so much deeper

There were hours that just went on for days
When alone at last we'd count up all the chances
That were lost to us forever

But you were history with the slamming of the door
And I made myself so strong again somehow
And I never wasted any of my time on you since then

But if I touch you like this
And if you kiss me like that
It was so long ago
But it's all coming back to me
If you touch me like this
And if I kiss you like that
It was gone with the wind
But it's all coming back to me
(It's all coming back, it's all coming back to me now)

There were moments of gold
And there were flashes of light
There were things we'd never do again
But then they'd always seemed right
There were nights of endless pleasure
It was more than all your laws allow
Baby, Baby, Baby

When you touch me like this
And when you hold me like that
It was gone with the wind
But it's all coming back to me
When you see me like this
And when I see you like that
Then we see what we want to see
All coming back to me
The flesh and the fantasies
All coming back to me
I can barely recall
But it's all coming back to me now

If you forgive me all this
If I forgive you all that
We forgive and forget
And it's all coming back to me
When you see me like this
And when I see you like that
We see just what we want to see
Al coming back to me
The flesh and the fantasies
All coming back to me
I can barely recall but it's all coming back to me now

(It's all coming back to me now)
And when you kiss me like this
(It's all coming back to me now)
And when I touch you like that
(It's all coming back to me now)
If you do it like this
(It's all coming back to me now)

Day 22 - Tears before bedtime...

Whose tears you're asking? Mine. Let me explain.

Today was always going to be special.

Cleo was coming home for a few hours. The transfers from car to chair etc had all been practised successfully last week, and we both thought we were ready. I know that we were thinking that if this was as simple as it seemed, then we could start making a case for cleo being at home very soon.

Arrived at the hospital about 1.30pm, and cleo, of course was waiting. We set off and left the hospital, and the transfer into the car went well, although I had not dismantled and folded the wheelchair before, so that took a while. Finally off we drove, and it felt so good to have cleo in the car, heading for home.

This is the point where i have to say, to all those people who manage their lives from wheelchairs or similar that I have more admiration for all of you than I thought possible. Of course, if you have a house that has been adapted, or modified then that would make life a little easier of course, but at this point we have none of that.

Arriving at home cleo got out the car and once in the chair we were ready to negotiate the front door. There was the first problem. Not having done this before, it's not easy getting someone in a wheelchair in a relatively small front door, as well as up a small step, and at the same time turning them in a very confined space to get into the lounge.

I have to say I got a little frustrated, but we finally did it. Next thing is that wheelchairs are fine in large spaces, but in a small house like ours, space is at a premium. Of course we are not experienced at this yet, and it will come in time, but every time this afternoon we wanted to move or do something, there were problems. Nothing we couldn't handle, but far more than we had imagined. We sat in the kitchen before the girls got home, shed a few tears together, and had our cup of tea as promised.

All that said, it was just great to have a few hours at home with my cleo, just relaxing. When the girls got in from school, cleo managed to sit on the setee with them and have a cuddle which was nice, and which i know they have all missed.

I went to the fish shop for fish and chips and for the first time in more than 3 weeks we sat around our kitchen table eating dinner as a family. Boy that felt so good.

Some time was also spent online, chatting to friends as well as on the phone and it was a very good afternoon and evening from that point of view. cleo was determined that there would be no tears and stuff, and she had a real need to kiss her children goodnight before they went to bed, again, something that had not happened since she had the stroke: saying goodbye at the hospital is not the same.

Once the kids were safely ready for bed, and the goodnights all said, Sarah was left in charge, and i organised cleo and her stuff to return to the hospital. Again the logistics of moving someone in a chair when you are not used to it is something that few people understand, including me I have to say. We had to try several times to get her out the front door, and by the time she, the chair, and her bag of things were in the car I was soaked with sweat, and thoroughly exhausted. We both agreed that it may NOT be a good thing for cleo to push to get home too early now, as both of us were not aware just how difficult this would be. That of course does not mean that if they said she could go home tomorrow I would refuse. She would be home so fast her feet wouldn't touch the ground. In the cold light of day she has to get the ammunition she needs to be at home; this might include walking a few steps, a little more stability when standing, slightly improved balance and so on. Only the hospital can give her that, and we agreed together that she must focus on those things.

Now, the witching hour at the ward was 10pm, and we arrived with 5 minutes to spare. I left cleo in her room, waiting to get ready for bed, and came home. At this point I sat and thought through the afternoons problems, and as I examined each one, I became a little despondent. I want her home here so badly, I would give anything for that, but I feel so inadequate. I sat here for 10 minutes sobbing my heart out, just because I had never dreamed all these new obstacles would be placed before us. We will of course overcome each and every one, and anyone who doubts that does not know cleo and I at all.

Run to Me, not away from me

When we first met, cleo was very good at running away. I told her then, and have said it many times since, that running away never solves a problem. She must always run TO me never away from me. Bring the trouble to me and we will deal with it, head on, in the best way we can. The lyrics i am quoting are from a Joe Cocker song, called "When the night comes", and include the line " I just wanna be the one you run to"

Hold on
I'll be back for you
It won't be long
But for now there's something else
That's calling me
So take me down a lonesome road
Point me east and let me go
That suitcase weighs me down
With memories

I just wanna be the one you run to
I just wanna be the one you come to
I just wanna be there for someone
When the night comes
Let's put all the cares behind us
And go where they'll never find us
I just wanna be there beside you
When the night comes
When the night comes

Two spirits in the night
That can leave before the morning light
When there's nothing left to lose
And nothing left to fear
So meet me on the edge of town
Won't keep you waiting I'll be 'round
Then you and I
We'll just roll right out of here

I just wanna be the one you run to
I just wanna be the one you come to
I just wanna be there for someone
When the night comes
Let's put all the cares behind us
And go where they'll never find us
I just wanna be there beside you
When the night comes
When the night comes

I know there'll be a time for you and I
Just take my hand and run away
Think of all the pieces of the shattered dream
We're gonna make it out some day
We'll be coming back
Coming back to stay
When the night comes

I wanna be the one you run to
When the night comes
To be the one you'd come to
I wanna be the one you run to
Ooh
I just wanna be the one you run to
Wanna be the one you come to
I just wanna be there for someone
When the night comes
Let's put all the cares behind us
And go where they'll never find us
I just wanna be there beside you
When the night comes
When the night comes
Ah ah when the night comes
When the night rolls down
Ah ah when the night comes
I wanna be with you
Ah ah when the night comes
Oh ah when the night comes in
Ah ah oh
Ah ah when the night comes
When the night comes
Ah ah when the night comes
I wanna be right by your side
Ah ah when the night comes
Yes baby
Ah ah oh
Don't do that to me woman
Ah ah oh
Ever stayed when the night time gets in here
Ah ah when the night comes
I wanna rise and up in the
When the night comes
Ah ah when the night comes
Ah ah oh
Love me

Its not that well known a song, but if you ever get the chance, listen, cos Joe Cocker is a great singer, and this is a song that about sums up many things about cleo and I and how we feel about each other

Day 21 - Reflections

I have spent a while today reflecting on the last three weeks, since cleo suffered the stroke. I don't think the enormity of it all has hit me until now, because we had all been so immersed in the actual mechanics of organising, visiting, trying to get some normality back, and looking after kids etc etc, as well as the emotional roller coaster that it has been.

I think the fact that cleo sees a light at the end of tunnel now has relaxed her somewhat, and me too. This relaxation has meant that the girls are also less stressed, and from Monday they will be back at home with me, where they belong, and that too is good.

I understand that some things will likely never be quite the same, but if truth be told I intend for cleo to be as close to how she was before as is possible. It is no good at all accepting the possibility that one might always be in a chair, or may never have use of the arm again. What is important is to set goals, and to fight to achieve those. Two days after the stroke I feared that we may never even hear cleo talk properly again, but that was unfounded (can you EVER stop a woman from talking? I doubt it!). Her progress is remarkable, and this leads me to believe that she will walk again. I also believe that in time the use of her hand and arm will return, and while it may be a painful and frustrating road, we have no choice but to travel down it, and to overcome whatever obstacles we find along the way.

The constant that binds cleo and I, and which has enabled us to do all the things we have done since we met, and which will, i am sure, give us, and especially her, the strength to see this through is our incredible love for each other.

I have talked about the love we share before but I cannot stress enough the power of that love. When I see her, my heart jumps, and when she hurts I hurt, when she is happy, I am too. We are symbiotic: mutually beneficial to each other. I cannot imagine my life without her now, which is probably why I was so scared when I had this awful thought that I may have to do without her. Thank goodness that is not the case now.

I collected the kids from their dad's this afternoon, and we all went to the hospital. Cleo was in fine form, and as I said the fact that she can look forward to a few hours at home tomorrow made her all the more relaxed. It will be wonderful to bring her home, and just sit at the kitchen table, drink a cup of tea, and be ourselves. I know the kids are looking forward to it too, and there are plans to put up christmas decorations. I did go rather mad last week, and bought a 6ft tree for the lounge, which presently stands outside the back door, and which we have to find space for. I am sure we will.

The good wishes that all our family and friends have sent us has meant so much too. Friends all too often are not there when you really need them. That has certainly not been the case of late.
Every day I have received cards, mail, and phone calls from people, not only in the UK, but around the world who know us. Their good wishes have made a difference, and I trust that they know that.

Cleo and I thank each and every one of you for your help and support.

Unchained Melody.

Oh my love my darling
I've hungered for your touch
A long lonely time
And time goes by so slowly
And time can do so much
Are you still mine
I need your love
I need your love
God speed your love to me

Lonely rivers flow to the sea to the sea
To the open arms of the sea
Lonely rivers sigh wait for me wait for me
I'll be coming home wait for me

Oh my love my darling
I've hungered hungered for your touch
A long lonely time
And time goes by so slowly
And time can do so much
Are you still mine
I need your love
I need your love
God speed your love to me

Day 20 - Marking time.

Today was a bit of a non-event really.

You see there is no physio, or occupational therapy at weekends, and so the wards are quiet, and there is little to keep patients interested. Having said that, when I arrived at the hospital today about lunchtime, I found cleo fast asleep in her chair. She had told me earlier that she had not slept well last night, and this, allied to the fact that she has worked so hard all week probably meant she was totally shattered. She certainly looked tired.

I kissed her awake, and she smiled at me, one of those loving smiles that makes my heart miss a beat. She told me she was having trouble texting with her phone; probably because it's quite small. We swapped phones and sim cards, and cleo suddenly found herself better able to send text messages. Now I am even more inundated than before, but at least I can understand them now!

This weekend we are just marking time, allowing cleo to gain strength, and rest before Monday, when she will come home for a few hours. A restful couple of days is certainly a good idea in my view. We don't want her too tired for Monday.

Raise Me Up

So, with little to do we just went for a walk around the hospital and ended up having coffee in the restaurant. At this time a friend of ours called cleo's phone and they had a chat, which was nice. cleo is suddenly interested in this blog: not having been in a position to take much notice recently, there are friends who keep saying they have read it, and follow it, and suddenly today she wanted to know what I have been writing. I explained a little, and suggested that it was meant for her to read as a record when she comes home.

Having told her that I was quoting lyrics of songs which meant something to me, or both of us, she has asked that I use the lyrics to a song recorded by Westlife, although written by Secret Garden. The song, Raise Me Up has a meaning for both of us. She used it in her personal blog, as a message to me to say how much she loved me, and I have to admit that I did not know the song until she played it to me. I have to say that the sentiment in those words, from her to me reduced me to tears, and still leaves a lump in my throat when I hear it.

So, for cleo here it is.

When I am down and, oh my soul, so weary;
When troubles come and my heart burdened be;
Then, I am still and wait here in the silence,
Until you come and sit awhile with me.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.

You raise me up... To more than I can be.

Thank you little one for that thought. It is things like that which make our love so special.

Day 19 - It's Official....

It's Official!

Christmas is going to happen this year. cleo has agreement from all parties to be home from Christmas Eve till the 28th. As we have said there will need to be compromises, and we still have 2 weeks to go, for any further improvements, but at this point everyone is agreed.

The girls were ecstatic, and so was I. Arriving at the hospital cleo met me in the corridor outside the ward at 1pm, with a big smile. Her book, used for "short term memory loss" (they must be joking!) she had got Matron, OT and Physio all to write notes in, and sign to the effect that they all agree to the Christmas at home. She was holding that book so tight, nobody was going to get that away from her. Try telling her they didnt say that now!

cleo did say however that, as we understand happens with stroke patients, she had, after her tears last night cried several times this morning, when she was having various conversations with members of the care team. For no other reason than I think she was relieved to know that she was going to get what she wanted: home for christmas.

I guess thats the first part of her fight on the road to recovery.

I have pretty much organised christmas at home this week, sorting presents, and even buying the turkey, and other bits, right down to frozen yorkshire puddings. This way cleo need not worry, and we know everything is done and we dont have to worry.

At physio this afternoon james really pushed her: working muscles I don't think she knew she had. he fitted a slighly different kind of ankle support to stop her foot rolling when she tries to walk, and this improved her posture tremendously. She really extended herself, and again walked 2 lengths of the bar, about 25 feet each way at the end of which she was, although she wouldn't admit it, absolutely shattered. Of course she still has to be supported, and her left leg hardly moves, its more of a swing from the hip, but nevertheless, what she has already achieved is nothing short of remarkable.

Less than three weeks ago she had a massive stroke, was totally paralysed on her left side, and virtually lost all speech. Now you can't stop her talking, and she cant do enough to get herself better. She is fighting the whole time.

Further to that, we have agreement to bring cleo home for a few hours on Monday. This woman who has been through so much in the last weeks, having got the agreement from the hospital then gets them to agree to allow her to stay out till 10pm. Why? So that before she returns she can kiss her kids goodnight! What can one say. I am continually amazed by her resilience, and the fact that her family means so much to her that even at this time she thinks of them instead of herself.

I am in awe of what she has done, and continues to do, and my love for her is deeper now than it was before. Words cannot express what I feel, and although many times I have tried, I just cannot find a way to show that.

Christmas Spirit

As we had the confirmation about Christmas I am reminded of the wonderful Greg Lake song, the last verse of which is particularly relevant:

They said there'll be snow at Christmas
They said there'll be peace on Earth
But instead it just kept on raining
A veil of tears for the Virgin's birth
I remember one Christmas morning
A winters light and a distant choir
And the peal of a bell and that Christmas Tree smell
And their eyes full of tinsel and fire
They sold me a dream of Christmas
They sold me a Silent Night
And they told me a fairy story
'Till I believed in the Israelite
And I believed in Father Christmas
And I looked at the sky with excited eyes
'Till I woke with a yawn in the first light of dawn
And I saw him and through his disguise

I wish you a hopeful Christmas
I wish you a brave New Year
All anguish pain and sadness
Leave your heart and let your road be clear
They said there'll be snow at Christmas
They said there'll be peace on Earth
Hallelujah Noel be it Heaven or Hell
The Christmas you get you deserve.

After this few weeks cleo and the girls deserve the best Christmas ever and I will do all I can to make that come true. For me the perfect Christmas will simply be to have her at home and see her smile. Thats better than any present.

Day 18 - A Step In the Right Direction.

There are always highs and lows. We have said this many times this last two-and-a-bit-weeks. Today was just such a day.

Started off this morning with a visit from Occupational Therapy (OT) to assess the house for cleo being at home. Various measurements taken, and looking at access and how she will get to and from the toilet, and whether the sofa bed is practical. All these can be overcome, and it seems now 99.99% certain they will allow cleo home for Christmas. There is still concern that she may benefit more from being back in the hospital for another couple of weeks after Christmas, and cleo understands that, but of course it will be even harder to go back. The "dog-leg" turn we have into the bathroom from the kitchen may present a problem, because a wheelchair won't get round that, as well as being down a step. however OT say that James can work on getting cleo able to take a few steps, even with help, and that should allow her into the bathroom. Of course, if that's not possible, we can always use a commode. That compromise is well worth it just to be at home.

More progress...

So onto the hospital, and arrangements are already made to meet a friend there, who also visited last week, and at 2pm to see James to practise the as yet untried transfer into the car, and out. While Alan and I go off to eat lunch cleo goes to physio with James, and he gets her up and walking between parallel bars. Alan is impressed with her improvement since last week.

So I collect the car from the car park, and get round to the entrance near the physio department, meeting James, Alan, and cleo outside. James explains the transfer, and shows us how its done. Cleo manages to get into the car quite easily and out into the chair again.

Then we try it with me assisting and again the task is completed without a hitch. Once cleo was in the passenger seat she grinned, looked at us all and said "Right c'mon, let's go. Take me home!". Another milestone along the road to recovery, and one which from a mobility point of view, is very important.

James took cleo back into physio (it was cold outside, but she wouldn't give in to that) and I parked the car. When I arrived back at the gym cleo had been fitted with a lightweight leg brace ( a simple plastic affair which supports the foot, ankle and lower leg) and was up and walking the length of the bars again. Now with the brace she found it easier than before, but even so, walking 15 or 20 paces was a real strain. At the end, although obviously tired from the physical effort she was happy, and smiling.

Alan and I took cleo back to the ward and I then had to dash off and collect the girls. I left cleo with Alan for them to chat, and when I got back they were still chatting! cleo also wrote a little note for all those who have sent her get well wishes, and i have added it at the start of this entry, in her own handwriting.

We spent a nice hour or so after Alan had gone, just being together, and cleo seemed very content. She came with us to the ward exit as we left and suddenly as we walked away, she burst into tears, floods of uncontrollable tears. Now they do say that strokes can cause emotions to go into free fall sometimes, and cleo of course was very tired as well. It was just awful though to see her crying like that after such a successful day. She did say to me that she can cope with the days, but the nights are so long, and boring, and she won't be comfortable till she gets home.

Well, it won't be long my darling, and then we can have you back here, as good as new!

The girls went to the car, and I took cleo back to the ward, and settled her down. I have to report that like lastnight I secretly called her just now, and she seemed fine again. She said goodnight on the phone to Hannah and Sarah, and that probably helped a bit too.

So, even though it was a roller coaster day that hardly stopped at all, I think overall it was a good one for cleo's rehabilitation, if less so for her emotions.

Theres only one song for tonight, as cleo got in the car today, and sadly today was also the 25th anniversary of the death of John Lennon. So.. try this one.

Drive My Car

Asked a girl what she wanted to be,
She said, baby can’t you see?
I wanna be famous, a star of the screen,
But you can do something in between.
Baby, you can drive my car,
yes I’m gonna be a star,
Baby, you can drive my car,
and maybe I’ll love you.

I told that girl that my prospects were good,
She said, baby it’s understood,
Working for peanuts is all very fine,
But I can show you a better time.

Baby, you can drive my car,
yes I’m gonna be a star,
Baby, you can drive my car,
and maybe I’ll love you.
Beep beep mm, beep beep yeh!
Baby, you can drive my car,
yes I’m gonna be a star,
Baby, you can drive my car,
and maybe I’ll love you.

I told that girl I could start right away,
And she said, listen, babe,
I’ve got something to say,
Got no car, and it’s breaking my heart,
But I’ve found a driver, that’s a start.
Baby, you can drive my car,
yes I’m gonna be a star,
Baby, you can drive my car,
and maybe I’ll love you.
Beep beep mm, beep beep yeh!