Day 33

My goodness I'm in the dark today. Placed there by my loving husband!!

Phone rang early this morning and it was Addenbrookes hospital to ask Tim to come to hospital tomorrow at 2.30pm. Well to say he wasn't happy is an understatement!

Tim has said that he does not want to know if he has anything wrong with him ever! It doesn't matter what or when he would prefer not to be told that he has an illness. That's the way he wants it. I told him that that is selfish what about Tom and I. To say you just don't want any treatment even for blood pressure is ridiculous. I mean if you have something that's treatable why on earth would you not want it made better.
It really is beyond comprehension. To say you just want to go from day to day and then just die is beyond me.
Mikey fought so hard to stay alive and here is his dad trying so hard not to live. Where is the sense in that. He said I should respect his choices. That's fine but as i said now if you have a stroke and it doesn't kill you then what. He said he still does not want any treatment. He wants to be left alone. And i will be left to look after him. If hes awkward now what the hell will he be like if he is incapacitated and knows it. He said i was to help him!!! I don't think so!!! Yes i will look after him but i wont help him not to be here. So he may have to think again.

I have said to him you may be right and there is nothing wrong at all but surely its better to know that. Tim said i will worry if there may be something and i will worry if there is something so whats the difference. I said its knowing that makes a difference. But it fell on stony ground, and i have been in the dog house all day!!
Whats new!

I was going to let his sister know and then thought no best not. He told me in no uncertain terms that if he tells me something it remains between the two of us, but now he wont tell me a thing because i had to open my mouth and tell the Dr. Anyway why worry someone else unnecessarily. I said well best you tell me who i can talk to what i can say and how to say it because as soon as i open my mouth its wrong!!!

I need all this aggro like a hole in the head. Its a strange thing. Is all this related to the grieving process. Well i don't know because as my other posts have said there is no support group. There well be other people out there who can relate to how i feel but as yet they remain a mystery to me.

I managed to get hold of Claire today, and hopefully she has found a job. I hope so it will be a new venture for her and she can rebuild her life. As she should.

I know that Mikey felt very strongly that we should get on with our lives when he passed away. Its not so easy for me. Tim is trying to respect his wishes and is adamant that we should move on and do things. I however am clinging on to everything and cant move forward. I'm coming to the end of my life, certainly closer to the end rather than the beginning. Claire is young and will remake her future in time and i believe will do Mikey justice with that. Mikey will i hope remain an important part of her past. But me there is no past present or future. It just is. I'm his mum and always will be. I wont let go.

Do i present myself to the world as a coper and all is well and inside keep all my feelings close. Maybe that is the way in which Tim and I can continue to live together because right now at this very minute i could just pack a bag and go. I don't know where, how or what i would do. Nothing i expect just become a bag lady.
How strange that so many CF parents separate, i know Mikey was quite proud that we were still together and that we had been discussed by other CF patients that we were the exception!!
Now however, now Mikey has gone i am reflecting back on how hard it has been. How i struggled when he was small because Tim worked shifts and i was on my own so much of the time. Family never helped, really because they either had there own families or because Mikey was now well and they were unsure of how to manage.
The nights i spent up with him during an infection just checking if he was breathing. The days and nights of endless physio to keep everything on the move. The IVs that took so long to give because we lived outside the catchment area for an IV pump.  The CF nurse didn't come out to March as the hospital wouldn't fund the travelling!!
Yet we managed through all the hospital visits when i had done a night shift. Later when Mikey was older and wanted to attend clinics himself i would take him and then sleep in the car. His appointment would be at 10 for example and he would still be there at 12md.
That's just how it is. We managed and no complaints no worries we just got on with things. Mikey would have to keep talking to me to keep me awake.
Looking back now its amazing that we did all these things. Still manage the home both boys and Tim.
It sure is evident now how much our lives revolved around Mikey and how Tom must have felt neglected. Do you know i realise he was. Not with intent but because we wanted Mikey to keep well. Everything stopped to make sure his IVs were given hospital appointments were attended etc. Tom never once complained. That maybe why as they got older they were not as close as they were. That is sad.

Well on that happy note i will close. Goodness knows what will happen tomorrow but, it is, after all another day..................