Day 34

Waiting day today. Waiting to go back to Addenbrookes Hospital. The same hospital where Mikey died 6 weeks today. We arrived at the same time as Mikey was coming from the theatre it was a peculiar feeling.
Both Tim and i were quite subdued.
Tim managed to get in to see the consultant early and that made it a little easier.
Tim also had a scan straight away by mobile scan. I wonder why that wasn't used for Mikey in theatre?

The results of the scan were good, they did his neck today. He has however high blood pressure. Tim said to the Dr that he was there under duress!! He was told it was the right thing to do, send him to hospital. He also said to Tim that he knew that he didn't want treatment but he could either have something done at the hospital today or to go back to his own Dr. Tim chose his GP. The consultant said i will let you go as long as you promise to go to your GP. Tim said he would. He was told that high blood pressure was serious and should not be underestimated, that a simple thing as medication, one tablet can resolve his problem.

So Tim was quite positive and actually spoke about Mikey quite a lot today.
Tim felt that he was let down by the system and cant get his head around why he had to have the stones removed, surely he should have been put on the list and risked kidney failure that risk surgery to remove a stone.

Tim also said that he thinks about this every day and feels that Mikey would still be here if not for that.

It was good for me to hear him voicing the same things that i have been thinking but have not been able to discuss with him.

6 weeks and Tim said it still doesn't seem real. Its as though we talk about it but have put it in a box in our minds and not wanting to look inside. We coped like this with his CF when he was younger. Listened to everything and packed the information away until we needed it. Well this time i don't think that will work, well we will see wont we.

I feel much better today knowing that Tims OK. What a worry for us, i think Tim must have been worried even though he said not, he didn't think today was a waste of time after all.

Driving home and thinking of Mikey it was though i was trying to grasp mist. I can visualise Mikey i can see that smile of his and the way he always waved and try to grasp him and nothing. I hope that my vision of him doesn't fade like the mist. I want to keep that colour and life, so when i close my eyes that's what i can see. I never want to forget.
His tiny piece of hair, how i wish we could have another Mikey born from his DNA but not the cf gene or the sma gene wouldn't that be grand.

I look at women with their young children and want to say cherish them, and when i see young men of Mikey's age i feel angry and bitter that he isn't still with us.
I never wanted to be a bitter person, god i hope i lose that feeling.
There are no rules for grieving i have found. There is just this changing overwhelming wave of emotions they wash over you at random times of the day.
Its as though one minute life is normal, then you realise no things are not right, then you just cry. I find myself not thinking about Mikey yet suddenly this urge to wail and weep. I know that's not good especially when i am in the middle of a shop, walking down the street but i cant help it/ The tears well up and i try hard not to let them flow, to no avail. I find myself crying inside now. Silently sobbing but showing a normal appearance.

How can i continue to live as two people, the one that i show the world or the real me.
If emotions could be described then i would be a whirl of grey and black. Claws dragging through this mass of unkempt hair. A manic, deranged, screaming, weeping, intangible  substance wandering though existence with no direction, lost and lonely and so dreadfully sad. And yet desperately trying to find her way back to just being. Stretching out towards those people who have offered friendship and support no matter what. True friends who wish to save this poor wraith from herself. I remember you. I see you. I will reach you. But not yet, oh not yet. But friends wait for me i will come back. Thank you even when I'm not myself, thank you for being there. I value you, i just cant be me yet.

God where are the other mums like me. CF mums who have lost their loved ones like me.  HAHAHAHA I keep saying God and yet I'm a non believer. Well is that a surprise. See a bitter bitter woman. Oh well beyond hope? praps not.
I was once told that my birthmark was a punishment for something i did in my past life, or to make me a better person in my next. Well excuse me but hat would be three of my lives buggered up wouldn't it. I must have been wicked, or am i wicked? or will i be wicked? now if that's not confusing what is?

I'm going mad. As in the Queen song I'm 'only knitting on one needle'  Wasn't that I'm going mad or something like that. Mike would know and so would Tim.
Music has alwayss been important to all of. The love of different genres has played havoc at times in the house.
Me i love most music but not Michael Bubble or the theme music from James Bond that Tim plays endlessly.
I quite enjoy a bit of AFI, Metallica, Tina Turner, Eva Cassidy, Cher, Police, Rod Stewart, Michael Jackson, Kings of Leon, Snow Patrol, Chicago, Erasure, Communards, Scissor Sisters, Debbie Harry and Blondie, anything from Motown xxxxx.  ELO and the list goes on, oh Black Box Ride on time. God i can remember really dancing to that. Memories.
On that happy note i will leave this page and remember that
Tomorrow is another day.