Possible Progress but a reality check as well

MY AMAZING SON

I feel like I need to start with a bit of an apology, there was so much that I should have been doing this weekend but some how I felt the last 16 months just came crashing in on me. So much has happened in just over a year it almost makes me panic to just think about it . I have watched my son fight so many obstacles that it causes a pain only a parent can possibly understand .

I read an article in a paper this week by a man whose wife had been diagnosed with a serious but non life threatening illness. This without doubt changed his life as he became her carer for a while but the article was all about how it affected him. He concentrated on how much it affected him and how he had to ensure that he had regular breaks. Tyler has been ill for 7 years now and I have never once felt like the gentleman in the paper does , and I have never encountered another parent who does. I guess that that is what a parent is being about. You never dream of opting out you fight for the best for your child whatever their age.  There may be something in looking after yourself but as every parent I know is fully aware you always put your child first. I don't mean to be detrimental to the gentleman's struggle , it is just a very different perspective to most people that I come across. I guess maybe I shouldn't feel so guilty about needing to shut off for the weekend .

We have had some fantastic but also difficult news in that the hospice  now accepts that Tyler meets their criteria. This means that Tyler can use their pool, I am just waiting to see if he can use the rest of the facilities that could give us both a well earned break. You never dream that you would be pleased about your child being able to use a hospices facilities, but hey ho  its progress.
There might also be some other positive news thanks to our friends Sue and David on the wheelchair front , it might not be a long term solution but it could change things for the summer, watch this space!!! If this doesn't work a close friend and family have offered to help . 
On other issues we are still awaiting news, I know that staff have annual leave and that they cant help going sick but it is soooo frustrating when there is no cover and things get delayed by weeks. I am so touched though how local people and family are coming together to support us in getting everything sorted out for Tyler, and as ever I thank you from the bottom of my heart.

A meeting tomorrow with Spirit FM and the Observor may hopefully help things even further. it would be nice to get things moving on the house front before the next scan . A local architect has been in touch and offered to come and look at the house for free, again a real act of kindness from a stranger. As we don't have a clue when we will get to the top of the council list if we could do things ourselves it would be so much better.  

I try hard to keep Tyler's Trust separate to this blog but I have to say a thank you to the trustees who have ensured that we are all set for tonight's AGM. Its so wonderful to know that there support is there when we need it most . I must also thank my sister  Karen who despite having an incredibly busy job and a young family stepped in to help with some admin. Most of our family are in the North East and that makes seeing them difficult  but we always know that they are there for us in anyway that they can.  When they have needed to they have dropped everything and just got in the car and been here, that is so special and its important to remember the good things in life.
I hope these ramblings make sense, if you would like any further information please drop me a line at Janice.ellis2@btinternet.com