day 65

I'm so tired today. in fact not sure if i can do this today.

Yesterday has left me feeling emotionally drained. How can people be so cruel. If there is anyone reading this who has a child in a relationship just remind them what its like to be a parent. Mother  love never dies.

i opened the rucksack that was given to me yesterday. Well thanks for the thought Claire but consider what you removed from my home and what you gave me. Are you sure you could spare the items!!! Actually I'm grateful and I'm sure if you realised the pink t shirt was one of our favourites, we loved mike in that and have photo of him wearing it on screen saver. So that's good.

You said Mike didn't have much and that's very true, i wonder why, maybe your singing lessons, clothes make up etc oh and all the bills. Yep that must be why. Am i bitter. Up to yesterday no. Now I'm sure i am. What a bitch. I'm sorry Mike but you are not here now and we respected your wishes then but not now. Even you would have been horrified by my treatment.

I couldn't believe some of the things that came out of that mans mouth, and he called me evil. Well if the cap fits i suppose I'm wearing it!! Hey Ho.

To think that he said he was pleased that she had someone else so soon and that she was going to live her life as she should do and has she should have done!! when she got her new lungs. well I'm certainly all for that but couldn't she have had the decency to have spent time with him the week he was waiting for the op. After all he was told that it was very likely he would not survive the op. And that all she could spare mike that week was a few hours on the Wednesday. I told him he should have seen Mike that week and he would have seen how it was tearing him to pieces. Her Father didn't appear to realise that she had visited just the once.
I'm sure she will say to herself and convince herself that Mikey would have said that was alright. He most probably would have said it because he knew that's what she wanted to hear and he wouldn't risk hurting her. What a bloody shame!!!

Her father said that he knew how i felt as he had gone through almost losing Claire, yes i said you did, the difference is that she lived! and where was mike during this time. With her he said he gave her a reason to live. Yes and where was she when Mike needed her?

I realise that marriages split up regardless of cf or not. It was the way it was done. She knew mike was dying was giving him a few weeks of hope to much to ask?? apparently so. That will haunt her every day i hope. Spiteful, unkind downright nasty. Yes I'm all of those things and make no apologies for my feelings. Because that's what this blog is about. My experiences and my feelings, nothing more and nothing less. One side of a story. There are always two, it just so happens this is mine.

I could go on about the rest of our conversation but on leaving the thing he said to me and the smug way in which he handed me the rucksack and said i wasn't having anything else, Joni said what about the lap top and he said no nothing, Joni said said but mike wanted his mum to have it. Shes not having it was the reply. With that i called him a bastard, opened my bag and found the bill for Mikes flowers that Claire had ordered and she had asked me to pay for when she was sent the bill to her house. I had happily paid and Claire said she would pay me when she saw me. I had up to that very moment not considered asking for the money but i thrust the bill at him and asked him for the money!! I said at least she can do is pay for her own husbands flowers!! and he did. I also told him that if ever he ends up in a situation when he loses one of his children he will remember today.
I also cursed him and his and said he would never have any peace in his life and nor would anyone else. He just said well its a good job he didn't believe in all that. I told him he would rue the day. Because he will always have doubt as to whether the ashes in the casket are Mike or not. That's because he is comparing his standards against mine. I told him that today i have done the Honorable thing but they certainly didn't.

Was i mad!! at that moment i think i was, do i regret saying it, no i don't. Am i proud of my behaviour absolutely not. Am i less a person than i was, no. I became the person they always see me as in their mind so i guess they can now sit at home saying that she showed her true colours. Well if that's the case didn't we all. How very sad. That this is all about loving someone.
Claire who weeks ago was going to renew her marriage lines? well that's what she posted on Mikes page for all to see, and all the time she was seeing someone else. She  should have gone on the stage!! her act has been something else.

How Mike died in her arms, yes he did but she forgot to say that she was texting on her phone at the same time! That her dad was in the room and didn't have the courtesy to give Tim and i privacy for his final hours. My god that girl has got to grow up and learn to live independently. Daddy isn't always going to be there and then what.

Joni bless her said maybe they will now feel bad that they didn't honour me because they didn't think i would keep my word. Bless her I'm afraid where there is no conscience that will not happen. They are will be oblivious of anyone else but themselves.

I am going to put closure on my blog to that and will now concentrate in trying to grieve properly. Maybe that's whats wrong with me.

I hope if anyone out there is having similar problems they will get some comfort in knowing they are not alone. I wish i knew of someone else who has had as much added distress surrounding a loss.
I'm moving on, i have some fantastic friends who know me and love me warts and all make no judgements but just waiting for my storm to pass. They will be waiting for me in those calm peaceful place. I hope i get there soon. Wait for me i may be while, and so

Tomorrow is another day...............

Day 64

How the hell did i get it so wrong!!!!!

Today i got up early and the sun was shining. I picked up my niece Joni who was keeping me and Mikey company on our journey to Essex.

I said to Joni what a lovely day it was to take him back home to Claire. Was that my first mistake or was it just getting out of bed!!!

As i said i have never driven on a motorway and it took me about over 2 hrs. But i was really proud of myself.

We found the area Mike and Claire lived, we have only been there about 3 times so wasn't 100% sure. I said to Joni that i couldn't see Claire's car so we would leave Mikey in the car go and see Claire and have few minutes if she didn't feel like lunch i would give her Mikey and let her spend the time with him with out us being present and come home. I knew this would be the last time we would see each other.
Yeah well that was mistake number 2.

Tim warned me and said don't go Sue but i could not begin to imagine the horror i would be faced with. I am sitting here and am so so angry that i was treated as i was that it is almost too awful to put into words. Believe me it will not compare to the reality.

Readers of the blog will recall that i didn't go last week end because Claire said it was Abbies birthday and it would not be so good. I planned for this week end and Claire said Saturday would be better for her. I also asked if we could go out for lunch and she said yes!! Claire also told me she had cleared Mikeys lap top for me. This was his old lap top that he didn't use i hasten to add and that Mike had asked if i wanted.

I had asked her if i could come and just sit with Mikeys things for a while when i bought his ashes and she said that was OK.

Well all the above was a lie. Yes sounds harsh but exactly that.

Imagine how you would feel walking up to the flat complex to be met by Claires dad shutting the front door behind him. I said hello only to have the response have you got Michael's ashes. Not how are you did you have good journey etc. I said yes i had and he asked where they were. I said in the car, i thought id pop in and have a chat and then get the ashes for Claire.
I cannot express the way in which he spoke to me. Get the ashes and then you can come in!! and he started to walk towards my car. I said no hang on i will see Claire first. Only to be told that Claire wasn't at home. That she was finding it all to much and that she did not want me to give her the ashes. Well i just couldn't believe it. So said no i wont give you them i will give them to Claire. Again asked to go inside to talk. Complete and utter refusal and him saying that i was with holding the ashes etc it was so bad i said well i wont give them to you. He was so aggressive that he was waiting next to the car for me to open the doors so he could get the ashes. It was horrendous. A lady from a block of flats stopped and asked us if we wanted help. He was saying that i had no intention of giving them to Claire he didn't believe i had them etc etc.
I said why on earth would i have come all this way if i wasn't bringing him home. Why would i have purchased a casket in dark wood Mikes choice of coffin colour and have plaque done etc if i had no intention of giving them to Claire. I would just as well have said straight after the funeral I'm keeping them. Had he no idea that for the past 3 weeks i couldn't even walk!!! He said he didn't trust me!! Joni tried to say how on earth was she going to run off, as she has cerebral palsy that affects her walking!!
He wouldn't listen.

By now i was beside myself and said i cant believe this is happening i only wanted to bring him home. I knew then that he would take the ashes and leave us there. Nothing would convince me otherwise.

How could this be happening, i phoned Tim who said get in the car don't give them the ashes and come home. But i was trying to do what Mikey wanted. I said to her dad what sort of person do you think i am, its my son!
He then said that if i didn't hand the ashes over he would take me to court he wouldn't want to but he would. They were Claires ashes not mine. But i  said i would give them to Claire he said no he wanted them. I saw red all reason fled. Actually they are legally mine, morally they are Claires. I told him to get away from my car and he said no. I again told him to get away from my car and said you want the ashes?. I must have sounded as though i meant it because i opened the boot and spied the two Chinese take away containers full of ashes next to Mikes casket. Before i knew what i was doing i picked one up, closed and locked the boot walked to the front of the car to the grassed area and threw the ashes away. I don't think i need to tell you how he looked and how he said he couldn't believe it. How could i have done it but he had got hold of Claire when he realised what i was doing.
I then walked up to him and said do you think i would have thrown Mikes ashes away how the hell could he think that, but at least he did take us in the flat then and the casket still in the car.
Claire was going to see me one way or another. He said prior to that that they had put a few things together for me and i could have them when i had given them the ashes. What a swop i said!! how dare they.

Claire came i like a sullen 12 year old, where is he. No hello, how are you nothing. No civility, compassion nothing just looked at us as though we had crept in with the sewage. I said he was in the car and that i would bring him in later. We were not welcome, a backpack sat in the hall, i assumed that was the belongings she had put together. Can anyone even if they hated me behave like this. Could an effort at least for a few hours be made. At least i was trying to put closure in civilised way. Even though we know she had a new man in her life we were not judging. She could at least have had the decency to block the photos from my page. I didn't want to see her kissing her new fella when mikes only been gone for a short while! Yep she really loved Mike.

A few weeks ago she was saying how they were going to renew their vows. How hypocritical can you get.
We did get offered a cup of tea, even though grudgingly from her father.

I really couldn't stay and said we would be going Claires dad went outside. Claire could hardly speak kept saying you say mike said this and that, i replied but Claire you told me that this was what mike wanted etc and we believed you why cant you believe me. Shrugged and then went on to say she wanted the ashes. I told Joni to wait went outside got the shes gave them to her dad and went back to the flat.

To say we were humiliated really doesn't cover it. Her dad then said he didn't believe that mike was in the casket and that how could i do such a thing. I don't know and i said I'm ashamed of whats happened here today and it wouldn't have been what Mikey wanted. Madam went on to say that she knew i never liked her and how i haven't liked her since she and Mikey met!!  That i was withholding the ashes and she could have got them sooner and why couldn't she get them, i said they were in plastic container and i then had casket made, that we had planned to come up but she didn't want that week. Claire said what about the week she was coming to us i said yes and when i hadn't got the ashes she didn't come!!  How could i have been with holding them when i only got them yesterday. Her dad said that i could have released then to Claire if i wanted. That's true i could have but didn't want to i wanted to give them to her. What is so wrong with that!! I said why did she ring up the funeral directors when i had planned with her to come today. Her dad said he was going to go with her. I said but why were you going when we had made arrangement. No answer. Well i think its apparent that she didn't want me to visit the flat. Claire also said that Mitch had told her i made comments about her taking things from Mikeys room at home and said had she left anything That just about did it. I never raised a voiced i never spoke in a manner other than one of despair. She got up and went to her room with the ashes that her dad left there.at she did not want me to visit the flat., Claire said she had the right to take them because they were hers. I cant believe these people were invited into my home. How i asked Mitch if he wanted to spend time in Mikeys room and when Claire asked if he could have the items i never said no. I wasn't expecting it she could have waited till after the funeral but i never said that. The woman is mad!! or riddled with guilt and couldn't face me more like. Such a selfish young lady at this time. Cant we all afford to be generous.

I'm going to tell what happened next tomorrow but all i can say at this time is thank God i don't think like them, thank god i was bought up better and what a pity someone has never told that young lady no before. In the future she is going to have a hell of a time she wont find another bloke that put up with what Mike did.
I'm not proud of what happened when i left but i cant go to hell for it, I'm already there!! and i was severely provoked.

Tomorrow i will continue, but trust me it really doesn't get better!!!

Day 63

Big day today Mikes coming home.

I'm not going to talk about mundane things tonight it is far to important to me to have Mike home with us, what a comfort to me to have him here beside me whilst i chat.

I'm glad with the decisions i have made and i at last feel some inner peace at last.

We have been talking about where Mikey should be! and Tim has been moving furniture etc, ornaments have been stashed away to make room for our most precious treasure.

Tomorrow he is going on his final journey home to Claire and i will be handing him over to her care. The casket that holds Mikes remains for her is beautiful. It will be the last thing that we can do as Mikeys parents for her. It is a gift of love. I hope she realises that. I hope Mikey is looking down from where ever he is and approves!!

I am going down to Essex and its the first time i will be driving on a motorway!! 26 years of driving and it will be my first!! Shame on me!! Still it will be an adventure.

We have finalised everything today really. We have our plot numbers!!! but the land registry paperwork could take until February. That will be 6 months wait in total. Its taken till now to get the plot numbers through. Fenland council for you!! It is a slower pace here.

We also had to have certificate for Mikes ashes to prove authenticity as ashes cannot be disposed of willy nilly. Quite right so i will need to tell Claire tomorrow that should she reach a time where Mikes ashes may cause distress or that she needs to move on etc we have the document. We will need it for us to as we have the plot for him and Tim!!! As i said poor old me will be on my own, but close. I know mike would much rather share a bed with his Dad!!!

Well i better print off a route planner for the morning, and i will post some photos tomorrow.

I'm worried about tomorrow really but will be pleased to be back here tomorrow evening. Tim at least has some company. I hope i can cope as i know it will be a very emotional day for me seeing all Mikeys things and the flat that he loved so much.

Ah well Tomorrow is another day...........

Day 62

Didn't get to bed last night, managed to fall asleep at around 3am Migraine i think.

Went off to Newmarket and had interesting day. Very sad news from Pete. This year has been really dreadful for our region. Roll on next year it really does have to be better. The company was good and we were able to laugh at our training. Computers and i have a strong aversion to each other. On my part because i don't understand them and on theres, oh my word here comes that useless piece of humanity. There is no hope for the human race if they are all like her!!! Still we rub along to a certain degree.

Physio tonight and thank goodness there is some light at the end of the tunnel. Back has really improved and i managed to walk up to the fitness suite so that's huge plus for me. A bit of discomfort but no pain!!!!
Physio went well and i should be able to start gentle walks, increasing the length daily but no running for 6-8 weeks. Then will see Physio once a month to make sure no risk of injury returning and at least keep my back moving!! That's a positive thing to focus on. Looks like i will be on track in the new year.

Tim was surprised i think by my up turn in mood tonight.
I had been so down about not being able to do anything at all.

Managed to scan some old photos tonight so will start putting some on here and share my family with those who read!!

And i will return to the Fens story. I have managed to get some photos for that to but the camera isn't too good for that but that will soon be resolved thanks to Mikey. I hope i will do him justice.

I have always been proud of the boys and really want to do something to make them proud of me before i get too old!!! so that's the run and if i can a book in some form. The one thing we have now is time and i need to use it wisely.

Didn't get to book some days off but will tomorrow!!!!

I have been blessed with friends who care, who just by texting me make me aware that today i wasn't alone. They remember that Thursdays are bad for me, so i do thank them x

The photo I'm adding today was Mikey at 3 months. It was taken on the morning of his first ever admission to hospital, he had very bad chest infection. He was teething at the time and his first tooth came through in hospital.  As you can see Mikey at an early age was into his image. What did we start. He was such a good baby.

If i can some how start to remember the good times i may start to feel better. But i need to go back to the beginning to face the now.

I'm bringing Mikey home tomorrow so not sure how i will be, i will deal with that, i am confident the time is right for me to do whats right for Tim, me Tom and Mikey. After all

Tomorrow is another day....................
                                                                           

Day 61

Not going to be long tonight. Tomorrow never came today!

Have been feeling unwell all afternoon. I know this week will end so may issues for me, i guess that's weighing heavily. Not sure.

I look around and Tim seems to have everything in control and I'm just going through the motions. Its wearing.

There comes a time when you just have to stop, and that's today for me.


Its coming up to Thursday, well i guess that's here already its almost 1 am so yes it is. Its 11 weeks today that we lost Mikey. I don't know what to say.

No solace here for me tonight. Will be bringing Mikey home soon.

I wonder if I'm egotistical, this blog is all about me and my feelings, Is that what it should be about. Where are the funny episodes that make a blog interesting and want you to look back in weeks to come.

I must have met my other self today and shes here writing but enough is enough I'm going to rest.

Got to be up early, going to Newmarket for training. Missed Diana today and was looking forward to that. Why are there always problems that stop me from doing the things i want to do??? I hope to see her next week, come hell or high water!!!

I hope tomorrow will come and i will feel better than today. Never felt like this so not sure why? maybe got this bug that's going around.
On that happy note, tomorrow is another day..........

day 60

Rain, rain rain. Didn't want to get up today, didn't feel like work but you know that feeling when you have to make yourself go. That was me today.

I was so busy though that the morning passed so quickly there was no time to think. That was good.
Home for lunch with Tim and he had had visitors so that was good for him.

Back to work and absolute chaos. I had a chocolate biscuit. OK  no big deal but ti think i had a sugar rush and it was madness!!!! but good madness. Just couldn't get serious wonderful wonderful felling. What a change from that depressing harridan i have become.

I cant understand the mood swings i have the ups and downs its worse than being on a roller coaster. I feel as though i have met myself, passed her and now chasing to fuse the two of us together. Um not worked perhaps i will find myself tomorrow. I Rather hope not. I like this mad person i am today.

I have to say that my thought processes have verged on downright bizarre, professional, unkind, considerate, vindictive. Ooh that wasn't nice but its there lurking in the background of my mind.Anxious, sad and happy. All of these things today at some point. Am i safe to be let out in the community. ABSOLUTELY. There are far worse than me.

Do i believe in Karma, yes. My evening swim was fab good company and good conversation. First time been able to say aloud some of my feelings so that's been very good. I didn't feel like crying either. So that is huge step forward.

Been looking at places to stay for weekend will talk to Tim about it tomorrow. Will book some days on Thursday. Will ring my sister tomorrow to tell her we will go out for meal on 6th November!! Don't like Chinese but i can always have chips!!!

My back feels so much better today and not being in constant pain does make a difference in how you cope with other day to day problems.

Mike will be home with us on Friday i have made my mind up and that's a relief. Tim will be happy too. Spoke to Mark today and will go and see him Friday.

Will speak to Claire tomorrow to see if everything OK for weekend if not then that will wait to until good for us all.
Lets hope for another day of madness because Tomorrow is another day.

Day 59

I was dreading getting up this morning but i awoke to murmurs of voices, has Tim got the radio on, no definite voices. Oh no hope nothing wrong, but!!! no it was a good friend who called to see how i was. I managed to phone her later in the morning. Di called because she was worried about me. That gave me a real sense of relief. Strange how just a call can make the difference. We are meeting up on Wednesday and I'm looking forward to it.

Tim this morning was delightful, as if yesterday didn't happen. Did it?

Came home at dinner time and he had Roast dinner ready!! and this evening we went to Bar Hill to shop. Time filled and we were content.

Tim met old friend in town and they chatted about Mikey and that seemed to help Tim, who said we must try to celebrate the time we had and not mourn what we cant have.Mikey could never win against his CF and we must leave that behind as much as possible. Perhaps we will.

The thing is there is no manual and no handbook that tells us what is right and what is wrong. There are no set time scales and nothing to measure progress or regression against. We are the the grieving process model. Unique to each blue print. There is only one Mikey and one copy of us as parents. I think that's also true.

If i was to be able to step out of my self and come face to face with that other me i would feel so depressed. I wonder how many readers of this must wonder what they will read next. Sadly this isn't a work of fiction but life as it happens, gosh i hope for a good day.But hardly any pain today and can walk with a trace of a limp. Hope to get out walking and then running soon!! Tim feels that we were doing so well when we had that focus and the last 2 weeks have been nightmare for us both. Tim also wondered if he should have a puppy!!! I told him to start building a run now just in case. Mind you he did say he wondered if a chicken would have the same effect!!!

Tonight i opened my messages and for the first time in a long time i feel alive and useful. Thank you for involving me xxxxx

I'm going to bed feeling positive and i have sense of well being and value. Mike if it wasn't for you i would not have that and once again i am grateful for you leaving us a gift of this person in our lives. Love you and miss you. Soon be home with us xxxx An so to bed because

Tomorrow is another day...........

Day 58

My oh my, today has been without doubt the worst ever.

What is the point in living i ask my self. That's so sad coming from me and certainly the most selfish thought i can have. But its what i feel today. But do i mean it. Well no is the answer but its because I'm really struggling to come to terms with all that's going on.

This whole grieving process is crap!!! I don't know from one day to the next how it will manifest itself. Upsetting Tim seems to be the problem at the moment.

I cant do right for doing wrong and he feels the same.

Picnics by the waters edge was a disaster. We ended up not agreeing with what to do with my time off. Tim thinks we should go away every weekend. I just want to chill. Tim says we can if we go away perhaps in a camper van or something. I'm happy to do that on the odd occasion but Tim then says its a waste if we don't use it all the time. I tried to say that when I'm finished work I'm to knackered to get ready and go away and then be out all week end. Tim thinks i could still be fine. I said if i was at home all week then i would want to do something at the week ends. That went down like a ton of bricks as did my comment that if he wanted to go away for a week i wouldn't mind, or stop in  static van for a week and i would come at the weekend. That wasn't right either. Tim said i was more or less saying he could go and be on his own and he was trying to think of things to do together. I don't know.
Then about going away, he said why don't we book a week away. I said well Ive just had two weeks holiday and only been back at work for two weeks i just cant catch up. It would be better if i booked some long weekends. Still not right either of us. Not sure what will happen. Neither of us seem to be getting it right don't even know what we are trying to achieve. At the end of the day we will still have all of our feelings and this process to work through.

What i am aware of now as well not sure if its good idea to go up to Mikes next week end or not. Should i just put closure to it all and just keep what i have and to hell with the consequences. That's my true felling at this time. But if i get message i will change my mind, I'm just such a sucker or mug really.

We have not been offered anything of Mikes belongings. I have asked but that's not the same. Even then I'm not sure if i will get the two items i would like, Tim would have liked his watch and Tom has nothing at all and yet Claire has asked for Mikes ashes. That's is the rub. I was going up with them this weekend but Claire has said its Abbies birthday so i didn't want to spoil that day. The other thing was Claire had said that she had not yet cleared Mikes laptop and couldn't find the charger for his Camera. Two items i would like. Mike asked if i wanted his spare laptop before he died. I told him i would let him know after the op. The camera because he bought that after he and Claire split up and our love for photography was something we shared.( Mike also told us about the other person in Claire's life and i don't think even he would have thought that life would move on quite as quickly for Claire as it has.)  I said i would go up the following week end with his ashes. That's 6 days away.
I then discovered that Claire had been in touch with the funeral director the next day and asked if she could collect them. Not a word to me. The ashes actually legally belong to me now and Claire will have to ask me for them.

I don't know now if I'm going to go up, i really don't. I cant go to hell for thinking like this can i? I'm already there!!

Oh well i suppose i better try and get some sleep.
Tomorrow is another day.......................

Day 57

Saturday, first day of the weekend. Usual feeling when i woke, soon be bed time. How sad is that.

Misery was waiting for me before i was properly awake and rode my shoulders like a tempest all day.

I had such hopes that the road to recovery was mine, but not to be, well not just yet anyway.

I am going through the motions of living and Tim seems to be coping so much better than i am. I'm not sure if that's a front or if its the real thing. Sometimes i can hardly communicate with him and today is one of those days. Me against the world, and hey the world is winning.
Its so very tempting just to shut the world out. I drag myself through the days. Some days are better than others. Not today.

I can hear voices telling me that 'its what Mike would have wanted, I'm doing what Mikey would want me to do' but how do i really know that. And i should be doing what i want to do shouldn't i.

I just wonder sometimes that if we remove the surface skin of a human what would we find underneath. Beauty is only skin deep, whoever said that initially, really understood human nature. How does the deception become uncovered though. That is the biggest mystery to me.

I have become more questioning of late. I have, thanks to this blog been looking at the inner me. I don't always like what i find but each layer reveals part of my make up. Is anyone ever satisfied with who they are i wonder. I'm like an onion and they make you cry too. At the moment I'm enough to make a saint weep!!

i have at last put some photos on face book so that's another job done. Still more to do. I'm sitting in Mikes room, the drawing he did for his GCSE has slipped in its frame, and i should undo the back of the frame and straighten it, but i cant bring myself to do it yet. His bed sits lonely and empty. Mike would come home and lay on top of the bed, cover himself with his fleece blanket and sleep for a while. I'm sitting in front of the computer he would use when he came home. I haven't been able to open his drawers or look in the cupboards and yet i so much want to smell his scent and touch him. I can at least stroke his hair. The nurse at the hospital snipped a bit off for us and put it in a card. I can also lay my hand over his hand print that they took. Its a small comfort, but comfort it is. 

                                                             

Mikey loved this photo of us together we had been away on holiday. I wish we could turn the clock back, but that's not to be. I wonder if Tim and I will ever have that look on our faces again. I can hope.

Tomorrow is another day.......................

Day 56

Thet say fact is stranger than fiction. Welcome to my world.

This morning i arose with no pain!!! i could walk, should i be renamed Lazereth!!!! The physio last night worked wonders. I left home with a light step and the hope that today would be good.

Well that was the first error of thought for the day. Last night i was feeling a bit down really but felt that in some way that Mike was close. Well if his sense of humour was in play and he had anything to do with the day, thanks Mike!!! It sure took my mind of things, and i really mean it when i say i got to work at 9am and blinked, it was 530pm!!!! The time today just flew past.

A most unbelievable experience that left me open mouthed and initially at a loss for words. Was i actually being told what i was hearing. Had i stepped out of my world into one of fantasy and comedy mixed together.

What!!!!!!!!!!!!!!!!!!!! Talk about Peyton Place (anyone who remembers) followed by Murder She Wrote, followed by Z cars (again for those who remember) and it must be followed by The Avengers. Later it has to be He who dares wins and then loves labours lost springs to mind. God only knows what the next chapter will be.
Is my week just about other peoples life's dramas, what concerns me most are those who quietly endure abuse from their partners they are the ones i really worry about. I cant help those because they wont let me. As for this mornings drama, is it a case of attempted murder or what!!!!
I wish i could fully explain here what happened but at the moment unable to , if i was to read it on another persons blog i would probably disbelieve it myself!!!!!

I hadn't even managed to get my coat off.!!!!

The day steadily progressed in a similar vein. I felt as though i was walking in mud. No matter how hard i tried to achieve something another problem would raise its ugly head. A very small group of us attempted to have 5 mins. The looks between us as yet another situation occurred were memorable. Followed by manic chuckles and utter despair.

At last time to go home!!! Tim waiting and away we go. Tonight we have walked along the prom by the sea with a bag of chips between us. The tide was in and i love the sound of the sea as it retreats from the shingle. I felt relaxed. It was a bit cold and the wind was chilly but the smell the quiet was good.

I has asked Tim earlier about his day. He had a visitor this morning who didn't really Cheer him up but at least it made a change to his usual routine.
Tim then told me about our garden visitors, how i wished i had been there to see them.
We had a Woodpecker visit the garden feeding on the insects, Tim said his plumage was astounding and he watched hi for several minutes. These birds are often heard around the garden but rarely seen so what a treat. I wish i had been able to get a photo, but soon i hope.A Yellow tit went into our bird box!! for 2 years nothing has ventured in. Mike actually took a photo in the summer of the box demonstrating cobwebs over the hole!!! Whilst these two visitors were investigating the garden a Robin sat on the fence watching them. How delightful was that. What  picture that would have made for Country file competition

We are beginning to take pleasure out of life again. Helped by our love of outdoors and nature. We have realised that with out these feelings there is no life. Tim speaks about the purpose of our existence, frequently verbalising the futility of being alive without joy. Its such a very small step and one that washes away by the black days but its a start.

Mikey is in our thoughts constantly and i wonder when writing, how Tom would feel reading the blog. Would this remind him of the times when he was small and Mike was getting attention. Without realising it those siblings who do not have CF must have felt left out and unloved. That isn't the case Tom. We love you dearly its just that Mikey needed that extra care and time. We have that now for you, we did the best we could at the time in the only way we knew how. If we made mistakes it wasn't through us not caring for you it was through trying to have as normal life as possible but revolving around hospital appointments, treatments etc. It was now, looking back a very hard time for all of us, and i wonder how on earth we managed. I am so proud of you both. You have turned out to be very special young men. I also have to say very handsome young men. What Mother wouldn't be proud.
Tom its been hard for you too. Especially what has happened in your personal life, coping so far from home, your marriage breaking up at the same time as Mikes, although for you to have to cope with that 1 month after getting married must have been horrendous. Then the re attempt only for it to fail again just before last Xmas. I don't know how you have coped really. Both of you have had such a hard time emotionally the last 18 months. Just know that we do love you!!! and we know that you cant accept that Mike has gone.

Its the week end and looking forward to the walks we will have and hopefully spend time liking each other all over again. We spoke tonight about where and when we met. Tim actually bought the subject up. Tim's not known for his sentimentality regarding us so it was a nice thing to talk about. We were only 17!! i love that song by Kins of Leon. In the car we were listening to Black Box Ride on Time One of my favourites! Reminded us of the times i would get onto the dance floor. I feel i could jump up now and dance, Trouble is my back would probably go.
It will soon be morning lets hope its dry and hope it will be peaceful because after all

Tomorrow is another day.

Day 55

Its been 10 weeks today and notoriously Thursdays have been bad for me. Today just about takes the biscuit.

Work..... 2 sudden deaths in 30 mins !!!  Resuss,paramedics, police, resuss, etc etc, greiving relatives. Too, too much especially today. Cannot begin to describe the emotions rolling like a landslide over me.

The afternoon did not improve at all!!! in fact then had to cope with incompetence from outside the work area!!!!

Strange phone call which resulted in me feeling very bemused, upset and confused. But whats new there then. I wonder some times if kindness can be perceived as stupidity, consideration perceived as ignorance, helpfulness as interference. I do begin to wonder if its time to give up.

I had planned on bringing Mikey home tomorrow but will leave it for a while now.

Tim and i going away have decided to go away for a few days i have physio booked for next week and will check with Tom what he is working. I will book some leave, just a couple of days.

Its a shame that i want be able to do what i hoped on those days but all being well will have the opportunity to go back to one of Mikes spots later. Its all about memories at the moment.

Tim very quiet tonight and we haven't talked very much, accept about Mikes ashes and how their coming home will affect us both. It left us both with our own private thoughts. We also spoke about one of Mikeys friends who has had a transplant. Tim said he cannot understand why Mike didn't even get on the list, he feels very very sad about that but really happy for the young lady and hopes all goes well.

Its so cold again tonight, although the sun has been out today the wind has had an icy bite to it. Winter is fast approaching.

I wish Mikey was here so i could talk to him and ask his opinion about issues that are weighing heavy on my heart. That is not to be.

Well i better prepare myself for another day, and it gets no easier I'm just getting really good at lying to myself and everyone else. Why on earth do i constantly put other people first, my feelings last no matter the emotional cost to me. Am i mad!!!! Because at the end of the day i end up either offending someone or upsetting them all with no intent!! oh well why the hell do i worry. One of these days i will say what i mean!! Oh yeah, Ive said that before and here i am saying exactly the same thing again. I'm sorry to say Mikey but that is one trait you get from me!!! Who did you take after Mike, well i think you got the best side of both of us, however with that came those miserable CF and SMA genes.... so sorry!

Deary me was that the misery word again, or nearly. Well that's it I'm going to close before she descends,
Tomorrow is another day ....................

Day 54

I was determined that today would be good. Oh my goodness misery was hovering around all day. No firm grip but could feel her nipping at my heels all day.

Did work help? absolutely not. In fact horrendous day. Many hard things to do in the new year and the consequences for other people hangs heavily on my shoulders. I too will have to consider if i will be able to work with the decisions made higher up the work ladder. I have fought so hard today and even then I'm not sure if the requests!!! will be enough. The economic climate hangs like winter already.

Tonight i have chatted with Claire on line and i will not be going to see her this week end as it is Abbie's birthday. Abbie is Claire and Mikeys niece and Mikey loved her dearly. It would not be right to go on a day when they will all be together and spoil a happy day. So i will go the following weekend and take Mike with me. Not sure how i will feel.

I do try to keep positive, but worry about Tim. I bought him a radio today to have on in the kitchen. i don't know if it will help or not. I'm sure a puppy would be good for him. We really need to think seriously about it. Shall i book a weekend away? Tims been talking about it now for ages, but with my bad back i will not be able to walk anyway. Um. Physio tomorrow that may help.

I read on facebook tonight that one of Mikes friends Louise has had a transplant. I hope all goes well. Louise used to keep in touch with mike, they both spent a lot of time in Papworth at the same time. Mike really liked her parents, and said they always stopped and had a word with him. Mike would have been over the moon for her. Fingers crossed.
Whilst i am really happy for them all, i do feel sad that Mike didn't get that far. But it wasn't to be and i must not dwell on it.

Looking forward to completing the project regarding photography!!! lets hope i can do mike justice. Well they used to call me click happy i do hope that's what i become!!

Its so cold tonight. The Swans have arrived at Welney early this year and that's also an indicator that we will have a long hard cold winter. It may be a white Xmas.:( and no Mikey to see it. I am dreading Christmas this year. Tom has said he will be home no matter what, so that will be good although I'm sure Tim and I will be offering cold comfort to him. It is a few weeks to go yet and we may feel a little more able to cope. I hope so.

I hope i can soon get back on the road again, I'm missing the time!! missing the music!!! missing my focus!! just work, home, bed, work,home, bed. Its hard but we cant live on fresh air!

Well i better attempt to go to bed. Its earlier than usual,and in this grey state of mind i cant think straight. Don't even know if i can summon the energy to either. My though processes are shot!

Ah well Tomorrow is another day........

Day 53

I must start my blog today by saying how very grateful i am that Mikey had so many people in his life that cared for and about him. Its because of whats happened that some of them have come into my life. Strangers to me, but who have become friends and some much more than that.

This blog has really become my salvation. I write whats in my heart and whats on my mind. In may ways my life is, and has become an open book to those who visit my page.

I welcome you and thank you for taking the time to read it.

This morning i awoke feeling low in mood. Events at work also made me question my ability as a nurse and carer. A relative ended up comforting me. That's not how it should be. But i was allowed to be human. I couldn't see that at the time but now in the early hours of the morning i can.

I feel as though i can go to bed tonight knowing that others share some of my feelings and that has reassured me that I'm not going mad and felt such a burden lift off my shoulders tonight. I felt for the first time in many weeks a childish glee and joyful wickedness, and do you know, that's OK!

I feel good! I am aware that such feelings usually result in a dark period but i know with the care from others i will come out of the other side. I feel loved. What a gift to bestow on another human being. How generous others are when they too are grieving, do they know what they have done or have they, taken on my burden and just added to theirs. How strong they are.

Misery cannot have me tonight, i banish you, begone from me. I will have rest tonight! i know you will hover and catch me unawares, but not tonight, no not tonight. I refuse to be ensorcelled by you, and i will watch for you tomorrow.  

I want to be strong enough to add the rest of Mikes story  here and hope that day soon comes, its so tragic and sad but that's not for now, i can feel Misery advancing!!!

But tomorrow is another day..........

Day 52

Hi Mikey

Where are you? I've missed you and so want you back in our world, our lives. There is something fundamentally missing and nothing is the same.

Today i have gone through the motions of living but its a pretence.I'm not sure if I'm strong enough to do this anymore.
There is a hole in our hearts and we cant fill it. I have tried everything but nothings working. Why did you have to leave us. I know I'm being selfish but its because I'm so sad.

I came home from work today and just felt engulfed by a sense of loss. I told your dad it was because i was in pain from my back. Silly old fart i slipped on one of our walks. It must be because I'm getting old. Mikey i do feel so very, very old today.
I know you were tired, and i know the fight was too hard for you. I wish i could have shouldered some of your pain, i wish we could have helped you until you had a transplant we so wanted that you have the chance of a normal life.

Where are you, are you safe, are you happy, are you doing everything you wanted to. Are you breathing easy, are you lonely, are you missing us. Can you see us! What must you think. Dad talks to you every night. I know he does he talks to your photos in our room, can you hear him. Dad is coping but its because he has to for me at the moment. I think I'm confusing him with my mood changes. Well nothing new there then! He even asks me if i want to go shopping, and you know how he hates that.

Mikey what can i do. what should i do now? I'm so very lost. I'm crying and cant stop. I cant even tell you what I'm crying for at the moment if you asked me. I cant explain. Everything is an effort. I know it cannot compare to what you were going through, but just dressing, getting out of bed in the mornings, going through daily tasks is all an effort. What are you thinking? if you could say anything to me it would probably be 'pull yourself together Mother, your not dying are you' No I'm not dying in the physical sense Mikey but i am slowly dying inside and its such a bitter pain.

Maddie sent a poem, thank you for leaving her in our lives xx and its true what it says. Everyone has lied to us, the pain hasn't eased and time hasn't made it better, the only thing is that we have got better at lying about how we are. We are not fine even when we say we are, and neither were you!

What a dismal post tonight! and how depressing this must be for you. You spared us so much Mikey and we are so grateful for that.Do you know that we can never remember a time when you complained. Not once. You never complained that you was ill, that you never had a job, that you was unable to work, had difficulty in walking. We know that was a struggle but you was so independent and never accepted help. Never asked for help. You were the most amazing, wonderful son anyone could have. We are so proud of you. You always thought of others first. Always phoned and asked how we were. Such a generous young man. You loved with such passion. So selfless. And you are ours!!!

 Dad says you are sleeping and will not consider any other option, so Mikey, sleep well and we will see you one morning!

Love you loads
Mum xx

Day 51

Its been a strange day today. A typical Autumn day. Quiet, tranquil and warm. A lazy day, one that prompts memories of childhood, family life and our own childrens childhood.

Autumn wraps you in this warm cocoon, the Earth seems to be nurturing us for the hardships to come. Its slowing down a pace from the hectic Summer where we had stripped our inhibitions and lived life in a frenzy of activity, but also bogged down by the heat, the sun is harsh, tempers were short, sleep hard to obtain, even breathing is hard. The days were longer and we could do so much more with our time. This summer has been so hard in many ways.

The soft changing landscape, the warm colours of the trees, shrubs and soil make you feel good, a day where we could put aside our grief for a short while and imagine Mikey was just away for the day or on his holiday, a day to escape painful memories and replace them with happier times. Nature has today,tried to heal a part of our wound.

This morning Tim was cleaning the car in the warm sunshine. I decided to attempt to put the wretched computer on my bike!!

Follow the instructions step by step, yes that part was easy. Ha!!!! Managed to attach it correctly, next came the tough bit. Trying to understand how to set the damn thing up. Press this button, then press another button. This mode will show, another mode for something else.
Decided to take the bike out to see if it worked. My goodness how on earth are you expected to look at where you are going and check the blinking thing at the same time is a mystery to me!

Tim had a look when i got home and he was worse than me. Mr Impatient!!! Umm i wonder which son takes after him. Yes it has to be Tom.
Mike would work through instuctions step by step especially Lego which he and Tom loved. Tom would look at the picture on the front and commence, wondering why he was getting frustrated with it. Mike would usually finish his own and then complete Toms for him!! Until Tom got older, even then Tom would still get mad at it!!  Always in a rush was Tom about everything. Mike was much more laid back.
Tom would get frustrated with his driving, Mike just took it all in his stride, never saying he a had a bad lesson, just what he had been doing. Tom would come home and tell us all about the rubbish people on the road and how the roads had too much traffic etc. Rush, rush, rush.

Having become a little confused by the bike attachment i put it to one side and asked Tim if he fancied taking a picnic out to Graffam.
Yes bag packed chairs in the back, because i still cant walk far off we go.
We had a lovely quiet time just sitting watching the world go by, we then had ride into Northhants and looked at the quaint cottages and streets, All from the car of course. Then ambled home, me dozing in the sun shining through the windows of the car. Its strange but Mike,Tom and I could always drop off to sleep as a passenger.

It was still a pleasant evening so i went out on the bike again. I'm so worried that when I'm fit to walk i will have to start back from scratch, so at least this should help. Wont it?

Well yet again tried to put photo on. Cant do it, despite, copy and paste etc etc... have another go tomorrow, will get my personal assistant Joni to help!!!

After all tomorrow is another day!

                                                                     

                                                              

Day 50

Its just taken me nearly 2 hours to get my photos onto the computer and now i cant transfer them to facebook. Damn and blast will have to wait for tomorrow!!

Tim's getting tired of being woken at 2-3 in the morning!!

I have managed to get out on my cycle today!! some exercise at last. It didn't hurt my back at all!!! So of to Argos and bought one of those wireless things that goes on the wheel, it will tell me how far i have been.
At least i will know how far my walks will be. Distance at least.
Ive looked at the instructions how to fit it, will leave it for tomorrow!! looks reasonably easy but with me its any ones guess if i can sort it.
Mike gave up with me when i tried to connect the computer to wireless. I can still hear him and Tim laughing at the TV whilst i was sorting it out. I was so pleased when i did it, mind you the computer hasn't been the same since. Why has Yahoo had to change everything i do not like all these blasted things at the top of the page. My screen is 2 inches smaller now. What is the saying, don't fix what isn't broken!!

If Mike could see us today he would have been doubled up with laughter.
When i had this hub thing sent for the computer we had new phone sent. Its got an answer machine in it!! Tim and i had huge problems retrieving the messages from the handset. It was only today that we figured out if you press the button on the stand they play automatically!! My goodness, now we need to work out how to stop that damn woman talking and trying to take message when we answer the phone!! we must be quicker to answer it ourselves.

Spoke to Joni today and we are booking places for the Olympic opening ceremony. Mikey would have loved to have been there. Do you know Mike what a challenge that is going to be for me in those crowds. And London, oh my!

We are also trying to get a place for the final of the athletics, track event. Well we will see. I will be sad and pleased at the same time. Looks as if 2012 will hold some big events for me!!

Spoke to Claire today and i am going up to see her next week end. That will be a big day for me. Hope I'm ready, I'm sure i will be. Travelling without Tim as well!! 

Feel better today, i think that's because i have made some decisions, Olympics, USA next year. Eek!!!
Back feels a little better and can walk a few more steps.

Looked on Cf site last night and yes Mikes there on the board, lovely to see his name with all the others.


Cant get any pics on here today. Will try tomorrow. Am i ready to talk about the rest of the conversation with Mikes consultant. I'm not sure because coming to terms with what she said has been very difficult for Tim and I.

 Still tomorrow is another day so maybe, maybe...........

Day 49

Just so tired today. Everything is an effort. Maybe having this damn problem walking is getting me down. It could be.

Not heard from Tom since Monday so will give him a try over the week end. Not being able to walk will keep us house bound. Gosh that's a word for the elderly!!! surely not at that stage yet.

I went on the CF site last night and looked to see if Claire had added Mike to the remembrance board. His name was not there so i added it. There are so many names on the board, this demonstrated that there are many parents out there who must be going through what Tim and I are but how do we reach them. Do they want to be contacted. Do they want to talk like i do. I must give this some thought. It would appear that the Americans are more out going and will address the situation, English seem to be more reserved about sharing their emotions with others.

We have managed to survive another week and here we are its Saturday tomorrow again. A week with no exercise. I miss my lonely walk/jogs. I had time to myself. Locked in a world of music and pounding feet. It was good for me. I'm struggling with these exercises the physio gave me but persevering. I must admit that afterwards i can at least walk pain free for a few minutes.

Tim managed to get out in the garden and he was pleased with the work. Tim said he had sorted Mikes area out first and although the heavens opened this evening i did manage to get a glimpse of the work he had done. It looks so much better.Garden furniture next!!! prepare and protect the wood work ready for the hard winter to come.
I suppose i must be a little profit!!! ha Studying the crows for a few years has resulted in predicting the type of summer we have had. The hedgerows clear indication of long hard winter. So with that in mind i have asked my maintenance men to stock up on the salt for the paths etc. I have heard that there is going to be a shortage this year!! At least we will be prepared.

The next job for Tim is the garden shed roof. It needs re felting. I dread helping Tim because i usually suffer in some way. I can recall holding a fence post and Tim tried to hammer it in place using a sledge hammer. It was a six foot post so Tim stood on the chair, gave the post a hefty whack and it slipped of the post straight on my head. I have never been the same since. Nearly passing out and in agony he said are you alright. As i nodded he said well keep the post still and hit it again! All i can say is i must have been in shock. Who else and why else would anyone put themselves at risk again.

Tim was a little worried tonight. He said he went to light the gas oven, wondering why nothing was happening he looked and saw that he was trying to light the gas with his glasses case instead of the spark lighter!!! That revelation was followed by, i keep putting things in the wrong place and finding lost items in totally inappropriate places. I said its because he has a lot on his mind and concentration is poor. Well i hope that's all it is.

Perhaps we are having a bit of normality in our lives now, i don't know. Nothing has gone well since Mikey died, that could just be coincidence.

I bought another pair of shoes today. Third pair ina week. I love shoes and have loads some not even worn and still in their boxes! Its a weakness and something that makes me feel good, but only for a while!
I bought anew pair of Sketchers gladiator sandals on the Last Saturday that Mikey came home. He said what have you got on your feet. I said do you like them, the reply was no. I have to say that Mike did have a good eye for what looked nice or not. He was also honest in his remarks!! I haven't worn the sandals since. Nor the red sandals i bought the week Mike died. I wore them to hospital the day he died and cant bear to see the wretched thing, perversely i cant throw them away either. How very sad is that.

I was going to put some pictures and scanned newspaper articles, but the weather looks to be foul tomorrow so i just may ask Joni to come and help me!!!

I am so behind with my course work that i really should crack on with it. I'm still waiting for the certificate from Warrickshire College. Palliative care level 3 that i have passed. Oh well i suppose like anything else i will just have to wait!!!

To study then. and see what Tomorrow brings, it is after all another day!

Day 48

I was given a copy of the Sun newspaper dated Thursday 10th February 2005. It it was an article about Mikey and Claire.

Claire and Mikey described how they met in hospital in 2003, their engagement when Claire was very ill, and how her condition worsened to the point that she was on bed rest for 5 months with a lung capacity of 15% and how the thought of marrying gave her the will to live.
I am amazed how someone as young as Mikey then aged 18 was so devoted that he visited every day and spent the whole day with Claire keeping her company, what a mature young man he was. I then recalled how his time in hospital was when he was at the same stage in his illness certainly the last couple of months. We would always ask if Claire was visiting or he would let us know if Claire was going to visit or wasn't visiting so we would give him the time alone with her that he desperately wanted.
I know that he wished she could have visited more but as their marriage had ended and they were now friends he told us he couldn't expect her to come so often.
We know that the last couple of months were very hard for him and he was very sad a lot of that time. Mikey wished sometimes that he could turn his head off because of all the thoughts in his mind.
I wish we could have made him happier but that was not something we could do. I know that Maddie was very important to him and he was so pleased he had her to talk to. He also had some very good CF friends who helped keep his spirits up.
Being in a hospital room with just your thought must be very lonely and frightening. How brave was our son to cope with all of that. He really was something else and i am so very very proud of him.

I am going to scan the article tomorrow night and try to put on here for anyone who may be interested to read.

I have been to physio tonight and had some treatment on my back, i just hope it soon hurries up and gets better. I miss my walks and wonder if i will have to start from scratch again. Oh well what will be will be. Its not the end of the world is it. Its just so hard to walk. A few steps and then I'm stuck and in agony!!! Been given some exercises to do as well. Back in a weeks time. He was very kind but its definitely and age thing!!
Discs seem to have seized up as well as the nerve being trapped between them so need to loosen up!

Read on facebook that's Sammie's out of hospital yay!!!!!. Look forward to seeing pics of her cakes!

Tim was a bit down again today and i asked him if the day seems long. Its been raining so he couldn't get out into the garden and do a list of jobs he has planned. I worry about him during the winter. Tim was also looking at a bungalow out of town to buy. I wonder if we will regret moving if we decide to. Its not close to work so i will have to travel and i think i will miss here. It could be the biggest or best decision and i don't know if its the right time to make it. We could just be trying to make too many changes to quickly. Tim may have another plan tomorrow!!! Still think a dog is the best plan, we will talk about that a bit more at the week end.

I think i have managed to get through today better than Tim and he will not admit it but I'm sure hes lonely during the day. But getting Tim to admit that is as hard as pulling teeth.

Joni bless her text me last night to say her Aunt had died aged 60, she had brain tumour diagnosed three years ago. Surgical intervention to remove the tumour was partly successful but they could not remove it all. Although treatment has prolonged her life and she had been poorly lately it still came as a shock.

What next for our family. Its one thing after another.

I think I'm going to pluck up courage and bring Mikey home.

I cant sit much longer so i will close and hopefully add something cheerful tomorrow, because it is after all another day.

day 47

Bit late today, fell asleep on the settee. How sad is that.

Today has been a grey day, a nothing day. I suppose yesterday just overwhelmed me. Coping mechanism failed. Thank goodness for friends old and new!!

Tim had a visitor today! Our next door neighbor called to see him, his son Dan was Mikes friend from school who sadly died in road accident several years ago. It was good that Tim had something to add to our conversation. Lately everything has been whats been happening to me at work. Tim didn't look so sad today.
I wish he could have more people to see and talk to. Tim has said he prefers to be on his own but the days can be so long without company.

Do you remember me talking about the pigeon that was not well in my garden, well it would appear that his death was a mistake!!! I have to say that made me feel awful. The pigeon was in the garden almost lifeless unable to fly and his head a strange angle, we thought it must be some sort of disease, we have seen several about on our travels in a similar condition. When Tim discussed this with a friend who shoots he was told, oh its drunk. Tim obviously asked what he meant by that and apparently at this time of the year these silly birds gorge themselves on the new maize shoots which have something in them that makes the birds intoxicated. It does wear of in time. Imagine our horror oh my goodness we executed a drunk bird!!! Our only excuse can be ignorance and say it will never happen again!

Tim has been looking at puppies and i think he may like another dog. I don't mind and think it would be good for Tim. I hope its another wired haired pointer, i loved our Duke. He would get on the settee with Mike and they would sleep together. Duke would sit at the gate and wait for the boys to come home from school and later wait for Tom to come home from work. He loved a deck chair and we would spend many a happy time watching him try to get into the chair. The relief on his face when he succeeded!! Duke was another member of the family and now thinking about it, i do feel it would be good for us both. Something else to love and nurture another baby!! im certainly to old for that although there have been times lately that i wish i still had all parts functioning to enable me to have another child. I'm too old!!! so best knock that on the head.

Thinking of Mikey today, it was that old familiar feeling, lump in the throat, stomach clenching, heart beating rapidly, panic building, control! Not to give in to that. In doing so thoughts are suppressed, memories denied, managing, breathing but only half alive.

Still only have counselling available from GP. I know that there are many people reading this blog and hope someone out there can relate to these pages. I hope they may even help someone. I'm living in hope that someday i will feel better for longer.

Going for physio tomorrow! im walking dreadfully, just in order for me to get about. The mickey taking continues from staff at work. Its welcome and i know that in part they are all trying to help me. I am truly blessed by having such people in my life.

I don't believe in God but i do believe that there is another life after death. I feel there has to be something better than now. I believe that Mikey is in a better place and hope he can look down on us and is with his old friends and breathing easily.
I miss his smile, his laugh, his quick wit, i miss seeing him, i miss just not being in his company. How this does make my heart ache. I miss talking out loud about him because as soon as i do i cry.

I miss Tom and i just wish he could see how lucky he is, i wish he had someone to go home to as well. Lets hope that day will come to. Tom phoned home this week and he has had his house valued so perhaps that will close another chapter in his life and enable him to move on.
What a year this has been and its still only October. The days are creeping by.
I measure the day by getting up and going to work, look at the clock and wait for lunch, look at the clock and return to work, look at the clock and come home, look at the clock and wait to blog, look at the clock and see how long i can sleep for, look at the clock and start again. And yes
Tomorrow is another day, and its Thursday. I hate and dread Thursdays.

Day 46

 I am in a bad place today. A black hole. Its true what they say, that misery enjoys company.

Misery crept up on me unaware today. She stealthily descended until i suddenly felt her icy claws grip me with a savage intensity. She rested on my shoulder, enveloping me in her black cloak while whispering constantly in my ear.

I felt trapped, like a feral cat, hissing and snarling, lashing and swiping with my paws with their claws extended, tail swishing back and forth, looking for my cub, so much anger and distress that he wasn't here. Not resting until he comes back to me. It was with such severe exhaustion that the realisation hit me that he wasn't coming. Retracting claws, head down, tail still, defeated by death. And how misery laughed at my plight. And yet i embraced and welcomed these feelings because at least i was feeling, something, anything except the emptiness that is ever present. This is my alter ego for the day. Not the person who is walking and talking in their physical body. My inner torment not visible to the naked eye. But i know whats there, lurking in the shadows of my mind.

I have said before you need to be a mother who has lost a child to understand my pain. You have to be a mother to be able to imagine my pain.You have to be a mother to love as i do, there is nothing to compare. You have to be a parent to understand me! You have to be a friend to tolerate me. You have to be a friend to forgive me. Because you see, i don't want to be me!

I dread and fear for the person who eventually is responsible for being the trigger that releases my wrath and in some ways i fear for myself and my sanity. I will cross that bridge when needed, i will cope as i always do. Wont i? That damned CF! That thief and torturer of young lives. What is his satisfaction in doing this i wonder.

I thought today would be like the last few days, bearable. I had forgotten that i was going to assess a terminally ill lady, at least for a few minutes when i awoke.
Getting out of bed i managed a few steps without pain. That also returned, the pain i mean.

Arriving at the hospice i thought i managed well. Assessment completed and i seemed in control.

Work, i limped into the office, the staff appeared motivated and certainly busy. There were a few jokes, mainly at my expense!! The word grievance sprung to mind until i verbalised that i could not act on that as staff were of a lower grade than me.The gleam in one of the staff nurses eyes and a rather delightful grin demonstrated i had made a huge error and the harassment would continue. Even i could see the funny side and we all laughed, the atmosphere was good.

I walked to the pool this evening, well got half way and couldn't walk any more. God I'm going to have to ring Tim!! hobbled there knowing that no way would i be able to walk home!!
Swim in cold pool!!! Jacuzzi in hot water, lovely and some physio advice.
Joni bless her took me home. Tim watching football, a bit of facebook and wham!

That's when misery descended. Its Tuesday!

So here i am, sitting and waiting. I cant help it, i cant help it. Why am i tormenting myself like this. I don't know. When will it stop,and that worries me because is that when i start to forget, that scares me.

I miss Mikey. I miss being his mum, i miss my baby son.

Tomorrow is yet, another day......................

Day 45

I awoke this morning to a gammy leg!! hobbled out of bed and then to work!!

Forgot my office keys and couldn't get in till my admin staff came, good impression of someone who is coping well. Limped upstairs to my office thinking how the hell am i going to get down again. Well would think about that later.

My boss came, joy of joys. Lovely lady but again she must be thinking what next!! broken wrist, son ill, son passed away,  now dodgy hip. Time for a younger person maybe!! Diane did say that it is still early and to remember that this year has been bad and time will help. Once again that word. Time.
Then the worst thing possible regarding work request to assess terminally ill lady tomorrow. Not sure if i will cope, what if i have to walk out, what if i find myself unable to do the job anymore. Guess i will find out tomorrow.

Mike would be having conversation with his dad about it and no doubt making some disparaging remark about age, getting old etc!!!Why is that its mum that's getting old and dad just stays the same. Ummmm must ponder on that.

I came home at lunch time and Tim had heard from Jen and Ash. Ash had asked Tim why he hadn't phoned and did he want a game of golf. Tim said no he didn't want a game of golf and didn't care if he ever went again. That's sad because i know how much he enjoyed it. On asking Tim said he doesn't want to see anyone or talk to anyone. He knows that may not be good but its what he wants. Tim just wishes that Jen and Ash wouldn't keep saying they know how he feels because they don't. Even i do not have access to that information. Tim has kept a lot of his feelings and emotions to himself and i am sure that one day they will erupt. My problem is knowing how to cope with that when it happens. I can barely look after myself how will i be able to support him.

Today I'm a dish cloth. Slowly being wrung out and soon there will be nothing just a dried up old cloth.
I know Mike didn't want me to have a face lift but that one-stitch face lift is becoming more appealing. I wonder how long it lasts. Is it a big stitch? in my case i expect they will need a tension suture!!!! Is it one stitch each side or is it  running stitch all around. Um will have to research a bit more. It can, apparently be done in lunch break and no general anaesthetic!  Does that count Mike? is that acceptable?
Tim would sat no why not just let nature take its course. Yes well nature at this present time is rather harsh!!
I will ponder anew.
Hair, when Mike and Tom were small i had my hair cut because i was a little depressed. Should i grow it long now i ask and how about going blonde. My goodness even i can visualise the look. I am laughing, a cross between Barbara Winsor and the Corpse Bride springs to mind. Throw in a cauldron and hey ho Macbeth here we come!!!  At least the teeth are mine and no warts yet!!!

Home from work and fell asleep on the settee!!! not good. Poor Tim, i awoke and found that he had gone to bed. So here i am again. BUT how lovely that all the times i wait for him to pop up a friend of his does and chats it has made me feel better today and the night is easier. How do we thank someone else who has CF but has that capacity to share a sorrow when they to are enduring the hardships of this rotten, rotten disease. I have mentioned before that Cf people are amazing. Words at this moment fail me, i will I'm sure rectify that in later pages.  It was lovely that someone as well as Maddie wants to talk about Mikey.
I have been blessed that they want to keep in touch. Maddie has sent a message today as well.

So Mikey thank you for letting me share some of your friends, they are, like you, very special.
So tonight i am going to bed with a lighter heart, and with hope that i can overcome tomorrow.
I will return to the Fens tomorrow I promise!!!
Because after all  tomorrow is another day..........

Day 44

I understand that the Japanese view today as being a perfect day. It being 10.10.10!! Well not so lucky for me.

The day started out really sunny. A good omen for the day. The Suzuka Grand Prix had taken place early this morning and although Mark Webb did not win at least he came second. Could still win this year, up there on the leader board.

We decided to take the chairs, and a flask and have restful morning at Graffam Water. Get away from the house.
We got to Graffam about 1030hrs car parking ticket machine not working, should have thought about that!!
We decided to walk along the concrete path around the reservoir and i took some pics of the fly fishing going on. Lovely, we went a little further. We were not really kitted out for walking. A mistake that would cost me dearly later in the day.
We decided to walk to the next village and have lunch. We got there with no problems both of us very comfortable. We found the walk easy and i certainly felt very invigorated. Continuing to take snaps. Once at the restaurant we changed our minds and just had coffee. Tim said lets walk all the way round so i agreed. Its over 10 miles!!!!
Good exercise, different terrains and some hills!!! Still doing well. We discussed that i should have worn my new trainers, yes i wish i had!!!
We had almost reached base. I recognised the gate and the village, not much further to go and we had done well. Tim decided to walk around the lake. Its this way he said. Umm i had already said that when walking we should do it in short stages but he said that was rubbish, so rather than argue decided to go with the flow. So who was i to say i knew which direction to take. I am the worlds worst when trying to find my way anywhere.
Beside the lake we go, only to find ourselves in the middle of these strange fields and Tim saying i think we may have gone wrong!!! but lets keep going if we follow the waters edge we are bound to get back!!! Famous last words.
This route took us at least another 2 miles out of our way amid some dreadful ground. I slipped on the mud and jarred myself trying to keep upright. Although back now painful could feel a pain all down right but cheek and left leg started to go numb. By the time i got back to the car i could hardly walk on that leg.
Now i can hardly put any weight on it at all. Goodness knows how i will be in the morning.

Anyway we got to the car and Tim got the chairs out so much for having time to read the book i bought with me. It was now 2pm. We had walked for 3 hours!!

Did it take my mind of things, well yes it did but i could have thought of a better way.Couldn't i?

All i can think of is can i get fit to continue my routine that i had started for the marathon? i hope it wont be long before I'm fit!!! All Tim said was well buying those trainers yesterday was a waste!!!!!! Grrrrrrrrrr.

Today was Tims mums birthday and she has been gone for a while now.

Tim said if Mikey is in a better place and could have seen us today he would have been taking the mickey. I'm sure he would. He never could understand some of the stupid things we did.That makes three of us then.
Tim said tonight he must get someone to sort the aerial out. I said we have been saying that for 2 years. Mike said why don't we just get it done instead of talking about it. In fact he said after our holidays when i mentioned it why didn't i just sort it even if dad didn't want it. If it was what i wanted just do it. Here we are 4 mths later and still haven't done anything. Will we ever learn.

Why are we still humming and hahing about irrelevant unimportant things. I really don't know.

The trees are all changing colours today and it was a lovely Indian Summer day it made me think about my story and gave me lots of ideas. Now however I'm just sitting here wondering how the hell i will be when i stand. But i have not complained, whats the point. Its another irrelevance in the grand scheme of things. When i think how much Mikey must have suffered without so much as a grumble. He was so incredibly brave. I know he didn't think he was, but believe me Mikey you were someone very, very, special.

I feel ashamed to have written a page of absolute drivel in comparison. Am i getting egotistical and just thinking about me. I hate those types. Goodness does that mean i hate myself. Well there is a surprise!!!

No tears today, but trying hard not to think too much. I wonder if i am in another stage?? What is it. Is this the denial part? Ive certainly been angry and had disbelief so where am i now. Still waiting to hear from him so the chances are yes that's where i am now.

Well i better try and get up.!!!

Tomorrow is another day..............

Day 43

Gosh its Saturday again and decided to go and get my gait analysis done. Must do something positive with my time or i will start wallowing into the dark place. Mikey was adamant we get on with our lives and do something with them. So better not waste any of the little time i have left. At 56 years of age and thinking how fast Mikeys 25 years flew past i better get a wiggle on.

Tim took me over to Advanced Performance a store that specialises in running gear etc and perform the test.
Well we drew up outside and there were loads of cars. Ummm this appears to be a popular place to come i thought to myself. Walking to the door i was wondering if i should really go in here but by then i was at the door with hand on the glass. I spied a notice! Saturdays are very busy and you will need to sign in at the desk for appointment for the analysis. On entering there were loads of people in running shorts on the treadmills. Super thin ladies with all the kit on waiting their turn. Oops i thought wrong!!! This is big mistake. Again my thought process was rather slow and i found myself in front of the desk looking at this rather long list of names. Tim waiting in the car and possibly considering we are wasting the day i rather hopefully said to the lovely young man behind the counter. Do i Need to put my name on a waiting list for the gait analysis? Not at all he said i will do it for you right now. Oh my word, trust me to get a fit young man. Here i am a middle aged over weight hopelessly unfit woman amidst all of these young women and he gets me!! Well he must have thought he had lucked out.
I was asked what size shoe i took and off he went and came back with a stunning pair of trainers. Ummm these are nice i thought to myself. Anyway trainers on, he asked me to roll my jeans up so he could film my legs and feet when i run on the treadmill. This will then be compared with other trainers i may try.
Climbing aboard the treadmill with great trepidation he started me of walking. He came and increased my pace, the woman on next machine was already running. So he came and increased my pace a little more. And again by now i was walking at a pace good for me but he said do you want to run if i increase it more. Well because i had been using the treadmill at home i was actually doing rather well! how about that.So i set off running thinking god i hope i don't run out of steam before end of the test. What a sight i must have looked.
Test complete he showed me the results. Well i was running well! and correctly heel first and running on the outside edge of my foot, the only concern was that once landed i was turning my left foot in, so i just needed trainers to adjust that. Several pairs later and a jog in the car park i left with a new pair of shiny trainers.

Tim and i went for a long walk later and was chatting about going away for the weekend. We have been able to talk about Mikey in a happier tone and that has helped. I cannot however talk to anyone else about him with feeling as though i going to burst into tears. I wonder when that will get better.
We have yet to collect his ashes, that will be the next thing. I know Tim desperately wants him home.

Tom phoned today and had long chat with Tim and seemed happier today. He also said a colleague at work called Jason asked him how his brother was. Tom told him he had passed away. Jason asked Tom what was wrong with him, when Tom told him he looked shocked and said he had a niece with CF. Tom told him things were much better for the younger ones as medicine and treatment had come a long way since Mikey was born.

We have  treasure box of Mikeys cards, remembrance book and notices from the funeral. I have yet to put them together but i will, i just don't know when. Maybe in the winter when we cant get out.

I find weekends and Thursdays horrible because we spent our weekends around visiting and Thursday because that was the day he died.

I think i have accepted that everyone grieves differently and that we should respect that. A lesson learned rather late but better that than never.
I no longer feel whole and our family is no longer that unit it has always been I will never get over Mikey dying i know that too but i will i hope be able to see all the good things about our lives before that fateful day. But not yet.

The running has been for me a way of doing something positive and also a goal to work towards. I realise that 2012 will be significant due to the fact that Mikey was looking towards that year. When it comes i hope i will be ready for the memories that will come.

Tim has asked why i am so late in coming to bed. Its because i sit here hoping that Mikey will have written a message or put some new photos on his page. I know it will not happen and yet part of me still waits. I also think that will always be in my mind. In a very strange way it gives me comfort. What an odd person i am.
Concentration is shot, memory failing whats left!!

I understand what Mikey meant when he said on his CF forum that spending money is the only thing that was making him happy, but he worried about getting into debt. I have found also that buying an item does make you happy but it doesn't last its just a short term fix for filling time or making you feel good. That's sad to.

Anyway i better close and get some rest tonight. I'm going to give Roger a miss, get a cup of tea and a book and try to get some sleep.

Tomorrow is another day and just maybe i will continue with the story!!

Day 42

I wondered to myself if things can get any worse. The answer is losing Mikey has been the worst thing ever that has happened to us so may be i mean can things ever get any better. There is no light on my horizon that's for sure! The Gods must be warring because all the elements are swirling around making life on Earth a nightmare for many of us this week!!!!

We went to the solicitors this morning to sign the new wills we have made. Tim forgot his glasses so couldn't see what he was signing. I should have taken advantage of that! Tim's going to talk to Tom this week end to let him know where everything can be found etc. Tim wishes his ashes to go in with Mike, um not sure what will happen to mine!!! We feel better now that's all settled.

Its a week tomorrow since Tim and I had our conversation and we are both making big efforts to work together, i just hope in trying hard we don't end up causing more problems. Tim made a Dr's appointment though without me having to ask so that's really positive. Tonight he was talking about taking medication and even said he wondered if they would help his continuous headaches. I said i thought they would.

I'm sitting in Mikeys bedroom and looking around wishing there was something of his here. Claire took the two items that have been sitting in prominent position for years, and i miss their familiarity. Its a comfort thing.

In many ways going back to work has helped, it has certainly ensured that i have no time to spend thinking about Mikey. It has also given me time to think about my future, this is an area that consideration for mine and Tims well being must be made. Tim was adamant tonight that my happiness in employment was essential and since Mikey has died even more so.

My walking/jogging was going well. I went out on the road again tonight and pulled my back i think. Its affecting my left leg so i was hobbling along tonight!! I did take a torch with me because one section of the road i use is poorly lit and i though i may just fall, i do take my mobile and thought that i may have had to call Tim to fetch me home!!! Couple of my favourite tracks of music kept me going though. Must get myself some proper trainers!!!! A must.

I am pleased the week end is here, Tim said he wished we had booked a week end away!! After the two weeks we had i was a little surprised. I may look to see if we can get in anywhere next week end.

Well I'm going to try for an early night! I did say try!

Day 41

Its 8 weeks today since we lost Mikey and i am so tired. Tired of everything.

I have found just having conversations with people exhausting. Trying to maintain a facade of normality when inside I'm withering into a shadow of myself. My identity is lost, who i am, what i am, where i am. I can almost feel the physical effort my phantom self is making to survive. Is this normal? Do other parents feel the same. Am i expecting too much of myself. I don't know, i don't know.

I can only imagine that as well as grieving I'm so angry with other factors surrounding Mikey's death and the behaviour of others towards Mikey and to us as parents.

I wonder if we give the appearance of being gullible and i know i tend to see the best in people.
Well today i had a rude awakening and if i could describe my disbelief in the lack of respect for the dead i would not be able to.

I had a lovely visitor today and had been looking forward to her coming. That has been the only good thing about today. I didn't even have the quality time with her that i would have loved. The lady in question is pretty special and has such a capacity to embrace emotions and then analyse the information and share her outlook on the situation, that then makes the listener feel so much better.

I came home almost on my knees and i don't know why. Perhaps lack of sleep i don't know.

At the moment i could weep, and my tears would make another ocean. The tears are not for me but for everything Mikey hoped for and dreamed about. If he was here now and knew what i do it would break his heart. He had such a huge capacity for love.

 That damned CF if only he could have had his transplant he would have done so much with his life and would have broadened his horizons and realised there was even more in the world for him. That's what makes it so unfair. If had been given that opportunity the new lungs would not have been wasted.
I most fervently hope that he is in a better place and i wonder now if the choice he made was one that he knew what the outcome would be.

I was asked today if i believe in Karma and the answer is yes. I do think that there is a price to pay and payment will be collected. At this minute i hope that happens very, very soon. I hate feeling like this. I have never wished any harm to anyone and am on the border of wishing that. There is an old saying isn't there beware what you wish for................. well hey ho!!!!

I usually feel some benefit after writing my blog, but today i don't even have that satisfaction. I suppose i should go to bed and try to get some sleep but even now my brain is still working overtime.

I haven't even discussed the fact that a TV film crew came to my place of work today. Oh well i will save that for another day.

Its been suggested that i write a blog from this blog and wondered would anyone be interested in reading these daily notations? If i were reading them i would think they were a work of fiction. Well they also say true life if stranger than fiction and that's certainly true in this instance!!

Well tomorrow is another day and if there are no further blogs you will know that I've  committed murder and i will claim on the grounds of diminished responsibility!!!!!!!

Day 40

Have i been writing for 40 days? That long? I have added Mikeys photo today for my profile so now i may be able to added them to my daily blog. We will wait and see.

Its been a dreadful day, well i suppose yesterday could not possibly have been repeated it was too good to be true!!

It started at 0400hrs when i got a phone call from work. The reason why cannot be discussed on this page. A bad omen for the start of the day.

I decided i would wear yet another dress, one that's been in the wardrobe for a couple of years and had never seen the light of day!!! Mike and Tim would always look at me when i bought clothes and say you will never wear it!  Well I'm changing!!
Managed to get it on, but i haven't used a worn an item of clothing that required a back zip. That became a task in itself!! managed to get it almost to the top and then the party started!!!
I attempted to reach back, stretch my arm to the back, swapped hands and arms, used every technique possible to move it that final inch. By now it had taken 10 Min's of the morning!! i was cursing my wrist which i broke earlier this year. That wasn't to blame and  i eventually succeeded. Yay!! Not bad i thought once it was on and my complexion had returned to normal and not that ruddy reddish purple colour it had been.
Pleasant comment from Tim. That's good means i must look reasonable enough to exit the home and appear in public.

Work, lovely comment by Carol, who you all know from previous blogs and I'm sure you will know very well over time! I then explained how difficult it had been to get dressed this morning. This was followed by oh Sue you can buy something that helps with closing zips, Ummm sounds promising save all the struggling, yes you get them from the disability shops! Well the bell knolled and that was the start of a downward trend for the rest of the day. Yes i was still speaking to Carol when we left for home at the end of a very, very long day.

Everyone i had contact with today was in very peculiar moods, i felt as if i was speaking to strangers with very worrying attitudes. These people usually the most pleasantest of the human race that you come across. What is it about today.

I managed to get upset about Mikey today during meetings and had to leave twice. Have you ever experienced a rage swamping you and you almost metamorphosed into another creature!! well i felt that change come over me and heaven forbid if that entity escaped. I was so mad inside. That chance remark was just enough to push me towards the edge. It raised my awareness into how fragile the shell is that i have erected to enable me to cope on a daily basis. My inner anger at losing Mikey could very easily overtaken me. Time out!!!!!!!! Could grief have been responsible or is it the fact that i have become more intolerant of excuses made by others? I'm not sure.

I went home for lunch and Tim had cooked a lovely meal. Tim likes me going home in the middle of the day, he says the day goes faster for him if he has to cook a midday meal. I'm pleased that it helps. Tim did look very tired today and worn. I hope hes OK. He hasnt seen or spokn to anyone today.

The afternoon was no better in fact worse because not only was i dealing with personalitieses but a very very sad case that one of our employees is going through. I cannot discuss it here but i was so moved by their plight and would do anything, anything to help this person. All they were asking of me was to give them hope.  I did have to leave the room for a while as the memories of Mikey were so strong and so comparable that i couldn't cope. I managed with the support of Nick who was really supportive to both myself and the employee. It was a privilidge to give this person the hope thats required just to get through the day. The person also gave me insight into how they were feeling and explained that they cant talk to their family how they talked to Nick and I. That actually helped me and perhaps gave me insight into how Mikey may have been feeling, it also hurt to see someone suffering emotionally and made me question, how must Mikey have coped with the decisions and thoughts that were going through his mind.

Oh dear and Bev, my word she was like a  dignified galleon in full sail today. The armada would have been defeated in an instant if bombarded by her wrath. I have to say that i am sitting here now with a smile, so thank you Bev xxx

When i left work the sun was shining a good evening for a walk.So cup of tea and off we went.
We met an old colleauge of Tims and his wife and Tim chatted away to them for a good 20 mins. I think he needed that.

The evenings are turning very cold now and my wrist is playing up. The Dr said this could happen when the seasons change.

The photo that i have added to my profile is a favourite of mine and i would like to get print enlarged and frame for home. I think i will do that soon.

Tim has said that the week end weather looks promising and we will try to find the star in the sky that i bought and named for Tim I named the star Mikey. I said to Tim when you look up Mikey will be shining down on us. I thought that was just right and felt warm and comfortable saying that. I hope Tim will try to discover it. We have a map!!!

Its Thursday tomorrow, i hate Thurdays and it will be 8 weeks since Mikey died. I dread tomorrow.

 Tomoorow its not just another day..............