I really wish there was some forum for people like me. Parents of a CF child/adult who has lost the battle against CF. I have looked on the CF trust site and where parents can make comments its mostly new mums or mums of younger children and these parents still have hope for the future. Who am I to spoil their dreams and visions.
It's so very hard to get through the days. Tim spends so much time on his own which gives him little else to do but think of Michael. That's not a bad thing is it? but it just hurts him so. I am watching a vibrant man in his mid fifties slip slowly away and becoming an old man. Mikey would not want that, and Tim knows it but his grief is manifesting itself by accelerating the ageing process.
I'm worried that he has been getting these really bad heads again only now his speech is difficult to get out at these times and he wont go to the Dr's. Tim has said that he thinks he will be next and believes that he is ill but doesn't care. He misses Mikey more than words can say. I came home for lunch today and he was so pleased to see me. Tim said it gave him something to do cooking at midday so i will try to come home every day now.
I'm going to see Mikeys consultant tomorrow. I will ask questions that i probably don't want the answers to, but i know if i don't ask then i will regret it later. I am very anxious. Tim said he thinks he can cope by just thinking that Mikey fell asleep and that hes not suffering any more.
How did Mikey become so ill and we not fully comprehend what was happening. We knew he was ill but just did not think that he was at the stage he was at. Why? Why did we not accept it. We knew and have known for many years that this would happen. Was it the circumstances of his death? was it that we thought we would be told one day Mikey is really ill and you need to spend as much time as possible with him. Were we thinking that some film like plot would occur where we could gather the family talk it through with Mikey and each other and have x number of weeks to get used to it. Maybe we did. God knows we cant make any sense of it. We wondered today if we have actually accepted that Mikey has passed away and we will never see him again. I don't think we have. We are going through the motions we are upset we are lost but we don't really want to accept that. I m rambling and surely repeating myself. Who cares this is my page, my feelings. I feel like one of those women who tear at their clothes, pull their hair out and wail. That's what i am doing whilst showing the world a functioning person. But that hidden woman is the real me.
What would Mikey think of this if he could read it? 'Mother' he would say 'what a load of rubbish, get on with life, there is nothing else you can do for me except live.' Oh Mikey i know that but you did say we could grieve for a while didn't you.
I may just make contact with the lady from CF magazine and ask her where we can get help from, at the moment i cannot talk about it out loud but i can do this. You were right Mikey writing about your problems is therapeutic and it does help.
I'm not so angry today but i expect that will change. I need someone anyone to blame. I know that's not right. You had CF, no ones fault, just bloody unlucky but that really does not help. I want to go out and punch someone, whack them over the head, beat them senseless and drag them up onto their feet and ask them why and then do it all again. Who are these imaginary people, they have no faces, no form, no essence of humanity but they seem so real these wicked, wicked imaginary beings who robbed me of you.
Tim's in bed trying to sleep and here i sit again. Well i better go and do some walking otherwise i wont be fit for the 2012 Marathon that i want to do.
We will see what tomorrow brings. It is after all another day.........
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