I needed to find some happy pics to start this off with!!!
I don't normally like pictures with me in but I do like the one of Tyler, me and Eileen which was taken at the AGM. I also love the pic of Tyler with his Uncle Jimmy(top one).
As I put in my last post Tyler recently had his scan, as any family in our postion will tell you the wait for the results is the longest and most stressfull time that you can go through. It involves lack of sleep, bitten nails and jumping every time you get a call.
As you can imagine this is a time where you can do with as little extra stress as possible.
During my last few blogs I have highlighted just a few of the battles we have faced in getting Tyler the help that he needs. You can envisage my reaction when I received a really distressing email from one of the places that we thought were there to support us . I was so upset that I haven't turned my laptop since, well that was apart from sending the email onto my sister to get some perspective. As she had been involved with the process from the start I knew that she would give me a sound opnion as to whether I was overreacting due to circumstance. Her feelings were the same as mine, for the first time in a long while I actually didn't feel upto replying , and again my Sis is stepping into the breach. All that I really want to say about it is that it was harsh, uncaring and it felt like that it had been written without any thought what so ever. The reply hasn't gone yet as I try really hard not to do anything in anger, and we really want to work with services and find solutions , sometimes there just has to be a common sense approach.
I sincerely hope that I never loose sight of the people that we try to support through the Trust. Once you become too far removed from families or run things as a professional institution you can loose sight of what is important. I wasn't going to post about this but an ex work colleague said that it might be good to - thanks Kelly.
It was lovely to catch up with some old work friends at a baby shower at the weekend, one of our Trustees(Carla) is expecting her first child soon and we spent a lovely afternoon in the garden eating cake. She even made the cake herself and it was amazing.
This was followed by an evening at the Dogs in Brighton to celebrate my friend Michelles 50th birthday !!!!!!!!!!! Tyler was really lucky and won quite a lot but Michelle and Duncan didn't get a look in , we are going to try horses next time to see if their luck improves.
We have all really enjoyed these trips out and it has served as a distraction but also lets us see that there is a normal life out there.
There is a lot going on at the moment and the next few weeks are incredibly busy but I hope that we are laying the ground work for some positive foundations for the future.
A friend always tells me however bad things are to think of 3 things for which you are grateful for each day. I always try to do this however hard things are , I guess it helps you to remain positive, but sometimes you just need to be quiet to let yourself process things .
Some exciting things are happening and I do hope to be able to share more soon.
Please do get in touch if you would like any further information on what we are upto
Janice.ellis2@btinternet.com
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