WHAT A WEEK
I almost don't know where to start so much has been going on !
So first I must mention the Tyler's Trust AGM, what a lovely evening, with the necessary legal bits done it was down to some wine, cheese and a little competition , won by Cassie who was presented with a bottle of white wine.
It was so lovely to see so many people there, nearly all of whom are now really good friends, and I am sure the new people will become so very quickly. All of this is down to Tyler he has a way of bringing people together, friends had travelled from as far as Reading and Southampton to be there. I don't know many people who can inspire others so much, after he gave his talk there were a few tears to be seen and such a round of applause it was an incredible moment. Beyond proud as ever .....
A huge huge thank you to Eileen who organised the meeting, to each and every Trustee, the Mayor who came along and stayed for the whole evening. Actually just a huge thank you to every single person who came.
The very next day turned out to be pretty special as well.
It started with breakfast at the Harvester with Tyler, Vicky and Susan to have a catch up before heading off to Spirit FM. After a late night the night before a good breakfast was just what the Doctor ordered.
At Spirit we met with Sally the MD(who made me a wonderful cup of coffee!), Stuart and Simon, Stephen from the observer was also a key part of our discussions. We were there to talk about whether Spirit/Observor could help with the house adaptions that we so desperately need.
I felt for the first time ever that people were looking at Tyler with understanding, empathy and care. It was more than that though it was the fact that they were willing to do so much to help us, to give Tyler a chance of an independent and fulfilling future , he has lost his teenage years completely having been diagnosed at 12. But with the help of Spirit/Observor and the local community we can give him his twenties,we may not have to wait for all the red tape to be sorted out for a grant.
Sometimes things are needed quickly, not at some unknown date in the future. We are still living with a bed in our lounge as it seems impossible to get Tyler the agreed arm chair. It has been agreed but trying to get it is another matter! One OT thought we already had it ,another was due to chase and so it goes on.
It is because of all this red tape, that I cant describe the relief and the gratitude I felt , that amazing people are willing to help, meaning some of the pressure is reduced on us. We have struggled for so long and it has been difficult asking for and accepting help but Tyler deserves the best possible future and we cant do that on our own. Tyler does the most amazing work for seriously ill local children and young people, he is passionate about this and we just need to make sure that he gets the help he needs to allow him to achieve this .
This has come at just the right time, it is very hard to accept sometimes that the future you anticipated is not going to be the one you have . The emotions that this brings up can make life difficult at times, I have to say also missing hubby Craig, a family in our position can often feel isolated and its even harder when he is away. There is no choice in this , when Tyler became ill ,we made the decision that he would do everything he could career wise as I would have to give up work. What's lovely though is that Ben is home from Uni for a while, have missed him so much but so proud of him. .
Watch this space for more news .
If anyone is able to help donations can be made at http://www.crowdfunder.co.uk/tylers-new-living-accommodation.
I must also mention that Stephen from the paper went to a lot of effort to find Tyler a place to swim, The Avidsford Park have stepped in , how wonderful is that . This is a real god send because although we have been accepted by the Hospice I still haven't had a call from our key worker to arrange swimming etc. Tyler's lovely physio Richard has agreed though that he will come up for the first couple of sessions which will be a huge help.
So at the moment we are concentrating on getting a routine in place to give life a purpose, a sense of achievement and all the things that most people take for granted. The aim is to get everything in place for Tyler to go back to college in September, this will allow a more normal life, he just needs all the support/equipment to be in place for him to be able to achieve that .
Getting out at times can be difficult but Tyler loves company so lets hope for a good summer which lets us host lots of BBQ's. If anyone has any idea's on fun accessible things to do locally please do let me know .
Janice.ellis2@btinternet.com
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