Day 18

I have been worrying all day about approaching Claire for some mementos of Michaels. Wondering if it was too soon to ask or if i would offend her by asking. How do you do this. Has anyone else been in a similar situation? i don't know.

Work today was difficult and i think it was because i had so much on my mind. I do need to be able to concentrate better or it will be a waste of time going. I do have this fear of not pulling my weight, when does enough be enough for the people i work with. They are really patient with me. I have managed now to go into 3 units my next hurdle will be HC. But not yet, no not just yet.

Tim doesn't look well and I'm worried about him but he says he is fine. I wonder if a puppy will help? i think i will talk about this whilst we are on holiday.
On our walk tonight Tim said me must do something with our lives and seemed a bit more interested in getting our passports. I said to him the only thing now that will stop us is ourselves. Tim said that when Mike was here we would always think that Mikey might need us and even when we were due for a holiday and Mike was unwell he would insist we go. I think that's the thing we still don't feel able to do things. I expect in time this will change.

Will phone Tom tomorrow and see how he is. We are not sure if his friend James is going to see him on Friday, we will ask if he wants us to come up and take him out for a meal. Although last time we did this he was unwell!!! So perhaps another treat would be in order. We will see.

I managed to get Claire on line this evening and had a long chat. As always she asked how we all were. Claire said that she thought Tim would be very affected by Mikey's death and she is right. It was good to chat and i was able to ask if we could have something of Mikeys and she said yes what would we like. I feel a little more confident now to discuss this with her.
Claire had had a letter from Turners about the flowers. We still haven't heard a thing even about the ashes. Claire said she would pay for the flowers and collect Mikeys ashes at the same time, but was a little confused about the letter. I will go in tomorrow and ask Mark about our invoice which we have not had yet and about Claires. I will let her know tomorrow as well.

Its hard to go in there by myself, but Tim still cant do that either. I wonder if anyone has realised how hard it has been for me. Just because i may appear to have the skills needed for it when it is your own it is so different, but someone has to do it.
When i have finished this blog i am going to email the CF specialist nurses to ask if they will put me in contact with the mum of the other CF adult who passed away. That may help, well i don't think it can do any harm, can it? well we shall see.

I think having some purpose particularly looking at ways of fund raising has given me something to think about and feel more positive. I do expect it to be a bigger task than i am imagining. Oh well there is always Joni, Carol and Nick to fall back on!!! That's going to happen often i expect. I'm not the most stable of people on my feet.

The weather is miserable today its been pouring of rain and cold. I just know its going to be tough this winter. Somone mentioned Christmas today, there is no joy in looking ahead.

I said to Tim tonight i wish we had the gift of seeing into the future but wonder if that would be a burden to great to carry! Would i take on that load? yes i think i would have done but now I'm not so sure. The vision i see is Tim and i becoming older and leaving one son with no other family and that is so scary. I want him to find someone who will love him and be a companion when we are no longer here.

That reminds me we must sort out our will when i am off work. Tim still hasn't made us an appointment. I will ask him to do that tomorrow.

It is strange really that we have had CF in our lives for 25 years, it has dominated our whole existence and now its gone just like that. As if it was pollen on the flowers blown away in a strong wind.
A stealthy ghost that teased us with joy and despair, only to take away that which we loved and nurtured so carefully.  A thief of souls, ours included. Why did Michael have to suffer. What was it that made such a wonderful human being have too endure so much his whole life. Michael has gone and with him so did part of us. Is that what life is about. What is the purpose, why did it happen to us. How strange that we are asking those questions now. When we found out Michael had CF we never questioned we accepted. Now i am questioning and i cannot get answers. Is this what they mean when the say 'its one of life's mysteries' may be, maybe.

There are others like him i know, a group of young people struggling with getting through each day, how do they do it. Michael just accepted i think and got the most he could from life, but how and what does a young person feel knowing that they have no future except the next day. Living with uncertainty. God we are so lucky to be alive and be normal. Do we take that for granted? Yes i think we do. Is there a better place? i really hope there is. I hope that Michael is enjoying life on another plane breathing easy and walking normally with his friends and family past. Why is that none has been able to come back and tell us though? Is that another of life's mysteries. Yes i guess it is. It means their existence is as we wish it to be. Tim hopes that we will all be together at some time. I hope so.