FEELING LIKE WE HAVE A MOUNTAIN AND THEN SOME TO CLIMB!!!!!
I guess that we all have days where we think things are impossible . At the moment raising £30,000 for the house adaptions feels a little like that .
I have just spent the afternoon writing letters and researching funding options . It just feels like it is going to take forever to get the funds that we need , and for those of you who know me Patience is not my strong suit!!!!
I know that we will get there in the end I just want Tyler to have what he needs now, I guess most parents can relate to that.
Our life seems to have become a constant round of trying to get the support that we need. Some of it simply isn't available in this area for the younger age group,but that is a different story.
It can be incredibly isolating and at times scary when you are responsible for the care of someone you love. I contacted our local carers support agency for some advice,for telephone support there is currently a 5 month waiting list.
Tyler's situation is very complex and unique, I find it very difficult to explain to new people what he has to contend with. It is therefore extremely frustrating if we spend the time going through it,and then we simply dont hear back from the person concerned.
I have actually stopped trying to explain our situation to new people. If we had a magic wand we would be able to open a young persons centre with all sorts of suitable activities. This is needed not just for enjoyment but for emotional development , so if anyone has any idea's please shout .
We have met some amazing professionals during Tyler's journey but I am getting a tad fed up with people who say I promise to ring tomorrow and 2 weeks later I have to start chasing them up .
Whilst I appreciate that our NHS staff and other support services are stretched to breaking point I do wonder what would happen to our vulnerable young people if they didn't have anyone to advocate for them.
I am thrilled to have been asked by the CEO of some of our local hospitals to sit on a children's board. This is generally just for professionals but due to my work on transition they have invited me to attend to give a parents point of view.
I have been researching what is available to disabled young people in this county and there simply isn't anything there. This may be down to the fact that there are very few young people who are in Tyler's position, however that doesn't make it right to not support them.
I was chatting to the lovely Micky from Bognor Mobility and Comfort yesterday , who has helped us immensely,and it was great to chat to a like minded person,who agreed that a little support for our most vulnerable young people,could allow them to go on and and achieve great things,rather than living on benefits for life.
There are services open to the older generation which would benefit our young people , but naturally where possible you want to be with those in a similar age group to yourself.
This is not to say to reduce current services,but to hlight that you can not forget about the younger group. Last year we were hugely upset when one of the boys classmates committed suicide. I don't know exactly what happened as we lost touch but I do know how hard it is to get counselling and other services that might be helpful.
I am going to do everything that I can to bring this forgotten group to the forefront of peoples minds. I would love to hear from any other young people who would be happy to share their experiences .
I am trying to finish up with something positive , I always make sure that I think of 3 things that I an grateful for each day, but struggling a bit at present . I challenge everyone to come up with 3 things that they are grateful for each day , let me know how you get on .
I think that it is slowly just registering what we have been through as a family , it is only 18 months since Tyler had the stroke, then the tumour grew and he had the incredibly risky surgery and so it went on. I guess that just takes time to accept . The future may not be quite what we hoped for,or even expected but that doesn't mean it cant be wonderful if in a slightly different way.
Once we have the house converted and Tyler is back at SPH there will be some normality to our lives again. It really was inspirational of the Head to come up with such an amazing idea, fingers crossed.
The school have been brilliant and it is this sort of support that really keeps us going , I had a lovely call from June the nurse to say that they had done some fund raising for us ---- thanks guys for all your support.
We are also looking forward to a few days in Devon , lets hope the sun shines . I really don't think that you can beat this country if you get decent weather .
If anyone has any fund raising ideas please do let me know , you can reach me at janice.ellis2@btinternet.com. I must say a huge thank you to those who have already helped us , we really appreciate it .
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