ONE YEAR ON

I see that a year has passed since my last post.

It has been a difficult year indeed with Russell Simon eventually dying of Cystic Fibrosis at 20h40 on Saturday 21 December 2013.  This was indeed a terrible blow even though it was expected.  I found myself in the difficult position of telling the doctors that he was not to be resuscitated but wanting disparately for him to live. This also coupled with a sense of failure but relief that his sad and difficult life was now over.  I suppose the sense of failure is that of a father whose role it is to protect and provide and yet I could not help my boy.

In his last days he started to suffer the effects of excess carbon dioxide in his system which was causing dementia, spasms, shifting consciousness, headaches and confusion.  He also began to have panic attacks during which he was very afraid.  He would say 'Help me Dad....I'm so scared.'  This brings tears to my eyes even as I write this.

The aftermath of my Russell's death meant a period of deep mourning and a dreadful sense of loss.  A seeking for my dead child and the horrible sick feeling when contemplating the finality of death.  This was followed by a month or so of deep depression and the eventual acceptance of what had happened and being able to cope with it.

I hope that when you read this you will keep the cause of finding a cure for Cystic Fibrosis to the fore so that others won't have to suffer as Russell did.

Russell Simon:  Born 24 August, 1978 St Augstines Hospital.  Died from Cystic Fibrosis, 21 December 2013 St Augustines Hospital.