Day 4

A better day today.

I phoned Papworth and made an appointment with Mikeys consultant Dr  Helen Barker so i hope that may help me come to terms with things a bit better.

The sun is shining today and that also makes the day brighter.

I phoned my boss and am seeing her later today about work. Tim wants me to go back because he thinks i will be better with people around me and to keep my mind active and focused on other things.

Joni text again to see if we are OK, she is so good to us.

Tim took me to the driving range where we spent an hour hitting balls! well i managed by the end of the session to hit most, thanks Tom for the golf clubs. Tim wants me to go again and have some lessons later this year. Perhaps i will.

We went to Denver sluice and it was so peaceful and the scenery was bliss. Harvesting in the background, birds singing and a cockerel crowing! i think he was confused at the time of day. Three rivers converging into one. How amazing was the draining of the fens.

A walk around Downham Market and lunch, Tim's way of getting us to eat is to go out for the day!

Went up to work and had a long chat with my Boss, she is so supportive. Basically i can do as i want until i feel able to work full time. There are not many companies that will do that for you.Yes i got upset but it will get better the more i see of people. Tim and i have been living in a bubble for a few weeks and it will always be there it doesn't matter how we try to escape it. We have to deal with it some time.
The staff had a collection for me to buy me some flowers but they collected £50.00 and Nick thought i may wish to give this to the CF unit instead. I will. I cannot believe how kind people are.

We have also given Tom a great deal of thought and we want to ensure he will not have to worry about the future. We are going to do our will to ensure that.

We are so grateful that we have Tom he is a son that we are very proud of and who we love dearly. I think Tom knows that even if we don't tell him all of the time.
Tom has become a very thoughtful young man and we don't want him to worry.
I hope he meets a young lady who will love him as much as we do. That will happen i am sure.

Well i have walked again to day and will continue to do so. Tim's really supportive so i am blessed.

Work tomorrow and i will phone Tom to see how he is, he is working afternoons this week so i may text as he may be driving.

Tim's not shaved since last week and i do worry about him, he says he is fine though. Still no contact from his family. I cant believe they are and have been so insensitive. At the end of the day the two people who we expected support from have not helped at all. They still think that they feel what we do. That sadly is not the case. They are not and never have been Tom and Mikeys parents. Tim is so upset by them but continues to say as long as we have each other and Tom we will be fine. I hope that will be enough for him because i don't want him to be lonely.

Well i better go and see Roger B again!! and see what tomorrow brings

Day 3

I woke this morning got up and wanted tonight to come so i could go back to bed and not think about a thing. Well life's not like that is it.

Tim really doesn't know what to do to make feel better, come to that neither do i. I walk into Mikey's room and can seeing him lying on the bed sleeping cos hes so tired. I go into the kitchen and can see him with his head resting on his arms on the work top because he was so exhausted walking from the car. I can see him in the lounge sitting in the chair looking so sad and worn out. Why couldn't we see how ill he was. Why did we just see this as normal for him and just part of his CF. Why couldn't we see that he was like Ed and James. Why am i torturing myself? why cant i remember the good times as he so wanted us to. Why cant i accept that he didn't want me to take photos of him. Mikey said i don't want you to take pics of me when I'm ill. I just wanted to take photos of him that was all.

I went down to Eastwood today and cried cos it upsets Tim to see me upset and i cant stop it so i went out of the way. Can i keep doing that? can i keep it in because i don't want to upset him? Where can i go and what can i do? i will work it out i expect.

Jen rang this morning and asked us if we wanted to go to lunch, i still don't want to eat but if i don't have anything neither does Tim and that makes me feel guilty, so i eat and feel sick. I expect that will get better to in time.

Time! a great healer but not yet, not yet.

Ive walked 4 miles today getting ready for my marathon in 2012. Tim said I've got to have some decent trainers so expect we will go and get some.
Tom if you are reading this don't get upset its just me rambling and getting things off my chest, its the only way i know how to.

Joni yet again has been looking after us and we do very much appreciate that. How strange and sad for Tim that not one member of his family has been in touch with him to see how he is. Tim must feel very let down by them and i don't know what to say to him. Tim said tonight all he cares about is me and Tom and how much having Tom in the house helped him. Toms on holiday soon and said he will come down, praps they can have a game of golf together. Tim wants me to go to the golf range and practice hitting some balls. Once i can hit a ball properly then to start playing. That may take some time.

I must ask Joni how to add pictures to these posts but that can wait.

I'm going to ring Mikey's Consultant tomorrow to make appointment to see her she maybe able to answer some questions.

I spoke to Claire tonight on messenger and i felt better for that, she is coping so well and incredibly brave for one so young. I wish i was able to.

Well i better go and have another session with Roger Black.

Until tomorrow.........

day 2

Is it still summer? my goodness it seems that left with Michael. Its been so hard not to cry today. I know it upsets Tim and hes been trying to keep me occupied to take my mind of Michael and its not working.

I have tried so hard to be calm and not to be cross but oh my oh my its so hard. I think it would make me feel much better, but at what cost. Its not worth it.

I have tried to contact people today with some success. Tim keeps asking me why i am bothering. The reason is Michael.

Anyway back to today. Tom phoned to talk about the Grand Prix with his dad and they were on the phone for ages, Thats good because i think Tom may be a bit lonely in Doncaster although its better for him when he is at work. I wish he could get a transfer home to March I would be so pleased.

Well what has today been like. Long in one word empty in another but i am blessed to have Tim and Tom and some wonderful caring sisters, who have given support. I wonder when that will stop and they will continue with their lives. Its to be expected.

We have been to look at a Mazda 3 not an mx3 like i told Mikey, he just shook his head and looked at his dad when we talked about this on one of our visits. Michael used to tell me do you ever really listen mum are are you in your own world. Well i think i am most of the time. Its where i can escape and just have the things i want to think about. I can ignore everything else. The sad thing is reality does exist and comes to fetch you when you least expect it.

Ive loaded more music onto the ipod and i have walked a bit on the my machine. I think me and Roger Black ( machine)are going to be firm friends over the winter months. I hope by the spring i will be good enough to start pounding the streets.

Day 4 no cigs grrrrrr best get another bit of gum i think.

Well in the words of Scarlett O'Hara Tomorrow is another day.

day 1

Well i thought i would try to make sense of what has been happening recently. Michael felt writing about things was therapautic so just maybe this will help me. I dont know but i will give it a go.

It just seems so hard to beleive that we will never see Mikey again. I have read all his blog spots including his CF site and found his writing amazing.

Will this make depressing reading, well maybe it will but hopefully i will be able to look back and see that we have moved on at some time. I hope so.

I dont know how to make these pages interesting, no doubt over time i will learn how to do that as well. I havent got Mikey to ask now, still he ran out of patience with me when i tried to connect the blessed wireless to this computer, he said ive told you three times im not having anything else to do with it. With that i opened the boxes and got cracking. I managed to connect on his last visit home.

I have decided to run/walk the 2012 london marathon for cf in Mikeys memory i hope by then i will have come to terms with losing him. Will i?

Im sure these posts are going to be muddled and be odd, however they are my thoughts and feelings so i suppose thats ok.

Tims in bed and i cant sleep, well there is a surprise!

Tim said today i must look at Mikeys death as a positive thing, that he is no longer suffering and no longer in pain, and that if he had woken up on that day he would have been distraught that he would never be able to have transplant and that we would still have lost him and he would have continued to suffer, emotionally and physically. Im sure he is right but i still want what i cant have. Tim thinks we would be selfish to wish that on him. I guess!

I know he was lonely and i wish i could have taken that hurt away for him and i suppose im angry about that. I wonder about how scared he must have been and if he had someone to talk to about that. I know Maddy gave him a lot of support and his CF friends but im his mum and i hurt for him. Tim says he made some very hard decisions and he must have spent time thinking about those, but they were Mikeys choices and we must respect that and that he was very courageous. I know but this damned CF!