Wednesday 7 January 2009

Adam Update 8th January 2009 - one year on

It seems impossible that it's a year since we brought our angel home to let him leave us for the last time and end his battle to stay alive against all the massive odds that had been stacked up against him for so long. At 10 past Midnight on the 9th I hope to be lighting some Chinese lanterns and letting them rise to be close to the boy....

This past year has brought so much change and little time for proper reflection but when the emotions force themselves upon you then that’s the time you have to let them flow, and there is little that can be done to stop them anyway.

There is little that one can say that gives solace at this time and the saying, 'I don’t know how you must be feeling' is one that Pauline and I have heard more times than we care to mention, in fact, unless you have lost a child then you truly cant know how it feels. And I hope that anyone reading this who has children never, ever has to feel the way we have for the past few years, let alone this past year.

It is indeed impossible to imagine how life goes on, but go on it must, if only because he wouldn't want people to stop living normally, he would certainly want people to remember him, he told me that often on the occasions that we discussed the possibility of him dying ' I don’t want people to be sad dad, but boy do I want them to know I was here!' he would say.

As part of my small attempt to make sure people remember he was here, I was pleased to witness the final piece of work taking place in the small room on ward T13 at UCH where Adam was treated so brilliantly by the staff there. This room has had a makeover paid for by the kind donations from everyone who sent money for TCT at or for his funeral, the final piece was the wording that you can see on the wall, it is the wording that was on his tattoo (the one I didn’t want him to have!) and its literal translation is

'he, who flies by his own wings, to the skies, through difficulties'.

I think that sums the boy up and I know he would be pleased to have left his mark in such a way, his image is also on the entrance door to the room which is now available for use by teenagers and young adults on the ward to chill and have massage, alternative therapies and 'stuff, not visible in the photo is a new massage couch and other seating to make the room flexible and less hospital like, it has met with a good reaction from all who've used it thus far, my thanks to all who donated, its good to see something tangible for your money!

Simon Davies from TCT said something to me a good few months ago, he suggested that after the initial shock, we'd be waiting for life to return to normal, and that in fact, how life is now, is now normal we just have to get used to it. Wise words indeed.

I still hear his voice calling out in the middle of the night in the way he used to when he wanted something, but I rarely expect to see him on the sofa in the way that I did a few months ago, I guess that’s progress......... But there a massive piece of our lives missing that will never be returned so this new 'normal' is taking some getting used to, I feel motivated to make sure that I waste no time in getting on with life. He said himself, 'life is short and we don’t know what's round the corner so do as much as you can and try everything, you never know, you might have a wicked time'

So, if there is one thing I have learned from this experience it is to try and figure out the answer to one very simple question that I would ask each and every one of you.............What, exactly, are you waiting for?.........

Love to all