How interesting that i contacted the CF trust to ask if they had a counselling service for parents like us and as yet have had no reply! I expect that it does not help their campaign as they look at promoting research and helping new families etc. Its not good PR to spend time and money on those that have gone.
Angie one of the CF specialist nurses have said there is a lady who would speak to me if i wished she lost her son in similar circumstances. I said perhaps we should start a support group!. The consultant thought that would actually be a very good idea as there really is nothing for us.
I coped a little better at work today i think and i managed to come home at lunch time. Tim had made soup and i have to say it was very good. It is giving Tim something to do and breaks his day up a little.
We are still receiving cards and today we had one from my cousins in France. How nice was that. Yet close family of Tim cannot even pick up the phone. His brother has not contacted him at all and his sister, well i think she has gone ever so slightly mad. In the words of Queen shes only knitting on one needle.
Tom rang tonight and hes looking forward to us going on Friday. He is angry and feels the health service let Mikey down. That he should have been referred for a transplant when he was 20 and fairly well. Why do they have to wait until he is so poorly and there is such a risk that a pair of lungs will not be found in time anyway. Tom also felt that it really hasn't sunk in yet. I agreed with him and was able to discuss the things his consultant had told me. I think that really upset Tom rather than help but we will see how he is on Friday.
Tom is also really upset with Jen and Ash and said that they told him that they thought of him as their son as well. Tom said a couple of holidays and one night of sleeping at theirs in his whole life cannot equate to being a parent.
Parents take you swimming, cubs and watch football, help with homework and look after you, they did none of those things. They cannot possible know what it feels like to be a mum or a dad.
Jen and ash apparently said that they have had to tiptoe round me for years!!! Yet again a most bizarre comment one Tim could not understand when she said that yesterday. Tom feels that they are now looking for someone to blame because they will not accept that they are in the wrong. I told Tom to stop wasting any time over it i certainly cannot and will not consider there actions. What a shame that not only have they lost a nephew in Mikey but they have now lost a brother, sister in law and another nephew. They have lost an entire family through their own actions.
I was going to write about the rest of the consultants conversation yesterday but i found writing it extremely hard so i will try tomorrow. I think it is important that i do, it will enable me to look back in the future to see if we have moved on. That is something we have to do no matter how difficult otherwise we will have lost 4 lives to CF not one.
I do hope Tom finds someone to keep him company.
Well tomorrow is another day............
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