Day 100

I cant believe that today i have sitting here night after night for one hundred days.
I have thought about how my writing has changed, i seem not to be in that state of utter despair now. I wonder if that is really true. Today i have questioned how i have managed to get here! There have been days when i wished this misery would end and now found myself offering support to my neighbor. How can i do that?

I was taking the photo of the birds nest outside Mikeys window when my neighbor came out to talk to me. I have been avoiding contact recently, just a quick hello and how are things. The two boys who live next door both have an incurable illness. We have followed each others children over the years and watched them all grow into adulthood. All of us knowing that at some point the day would come when one or the other would lose their child. Over the past year both the boys next door and Mikey were in Papworth, in different wards. We would pass their mum and dad either coming or going to Papworth. All of us in the same state wondering how each other was at the same time dreading to ask.

Now the eldest is very poorly again. At least with Mikey we did have some hope but Glyn and Karen do not have that. Lee has been in the most recently and those admissions have been more frequent.
Today Glyn was talking about how hard is is for them and how stressful it is and how it is affecting them as a couple. What words of comfort can i offer. I just listened and could relate to them, but what i cant possibly comprehend is their agony that this will happen to them twice. Losing a child is the most painful thing but to have to go through that pain twice would be unbearable.
I dread the day when they call to tell us of their loss. Will we be strong enough to support them, i hope so. The youngest son is watching his brothers battle and must know that the fate for him is the same. What comfort and reassurance is there for him. I don't know. I'm sitting here and its 0130hrs and Glyn has just popped out for a ciggie, i can smell the smoke through the window. I wont look out. I just cant at the moment.
Does that make me a bad person, i hope not. Its still so raw from losing Mikey, I do hope they are all home for Christmas. I know how important it was for us.

Mikey told us that last year may be his last. We didn't really believe that. Now we know how precious this time will be for our friends and neighbors next door. Karen will be heartbroken. That i can understand!

What we need in our life at the moment is something good to happen. Some good news for us as a family and i have no idea how that will happen. I do hope the new year brings us peace and some goodwill!! not to much to ask is it?

I hope Tom does find someone else. We were talking today and he will be so lonely when we have gone. We wished we had more children but that wasn't to be. We couldn't risk having another child with CF. We did though. I became pregnant after Mikey was born and we waited for 26 weeks for the test, to see his the baby had Cf sadly the tests were not reliable and we lost another son. That was painful but a decision not easily made. Mikey was later diagnosed as having SMA when he was seven. We were so pleased not to have passed that on to another child. We consider ourselves very lucky to have Tom. It would have been good though to have more. Well I'm to old for that. It doesn't look like we will be Grandparents either. I wonder how we will pass our old age?

Well i better get on Roger and listen to a bit of music. I will cope with things as i have, day by day. After all Tomorrow is another day...............................