What a few days !!!
I am beyond frustrated with the powers that be but so touched by the support that local people, Friends and family are showing us. In fact if it wasn't for the kindness that we are being shown from our social circle and indeed the kindness of strangers think that I would be grey and have no finger nails left.
So where to start , the arm chair despite being approved and ordered is yet to appear, no one quite seems to know where it is !! With regard to the wheelchair we have now raised about £2300 but with all the extras that are needed due to Tyler's health it is going to be nearer to £6000 as opposed to £5000. Once we reach £3000 I will order it as it takes about 13 weeks to build, we really need to do this soon to have it ready for the college term. Its really hard for Tyler to go to Physio etc and try these things out but then disheartening when he realises the wait that is involved. However you never hear a moan or grumble pass his lips. I must mention my amazing friend Lisa though as she has said that if we can get to nearly the full amount she will add the last £1000, how generous and wonderful is that .
In fact today he has been trying to look after me , I had to have a biopsy this morning meaning tat it is quite painful to walk. As he is numb on the left anything in the kitchen is very difficult and potentially dangerous. To my amazement and delight he had got his walker , and made me a cup of coffee, he then wheeled it in to the lounge. There wasn't much left in the cup and it was a tad cold but it was the best cup of coffee that I have ever had . He amazes me so much that fact that he cares so much when he has so much to contend with just makes my heart want to explode, and I simply want to be able to give this amazing young man everything in the world.
I cant fix his health for him but I can do my best to ensure that he has the best chances possible, and the basic equipment to allow him an independent life. To me it seems so wrong that when someone , not just Tyler, but anyone needs a wheelchair to have a independent life and there are millions going out in foreign aid . I try to steer clear of anything political but this is something that I really don't understand, but perhaps that is a conversation for another day.
So back to reality I have heard back from the CEO of the children's hospice and as they didn't have the consultants letter for the last panel we do have to Wait for the next one. My request for Tyler's case to be considered separately fell on deaf ears. Hears hoping that the next one brings some joy, people have been kind enough to put forward some suggestions with regard to pools but the difficulty is that they only ones suitable are just too expensive. We need somewhere quiet with a degree of privacy at least to start with, there are some ongoing enquiries so we can live in hope.
I think one of the issues that families face is that when a child is sick for a long time you have to live on one salary. This means that things you would normally replace as you go along have to be patched and repaired and there are only so many times that you can do this. We have finally managed to replace the downstairs sink, only to find that the bath has suffered some sort of damage!!! This meant a leak through the ceiling and is our next issue to resolve.
Just when things feel too much something always happens to brighten things up, I have taken 3 calls today and received messages to say that people are looking into how they might be able to help us . This means so much as there comes a point when you realise that you just cant do it on your own. That is very hard to accept but I cant thank each and every person who has come forward and offered us help and support. Things don't happen overnight but I am definitely starting to feel that community help might be quicker than waiting for red tape to happen.
We received a letter to say that we were on the waiting list for the disabilities facilities grant, and I think that it said we were a priority. The wording was a little confusing, and as I a an ex civil servant that is saying something !.If I have read it correctly even as a priority case they can give us no indication as to when we might even expect to get to the next stage. This means the more that we can do ourselves the better our chances are of getting what we need. So thank you to Mike B, Patricia, Liz,Sue and Trish amongst others for cheering up a despondent mum.
We have a meeting next week with Spirit FM and the Obsevor to see if they can help in any way, I am trying not to get too excited but this might be the only way that we can get things done before Tyler is retired.
So from the bottom of my heart a huge thank you to each and every person so has supported us . Please do keep the messages of support coming because sometimes it really does help us keep going.
So back to reality I have heard back from the CEO of the children's hospice and as they didn't have the consultants letter for the last panel we do have to Wait for the next one. My request for Tyler's case to be considered separately fell on deaf ears. Hears hoping that the next one brings some joy, people have been kind enough to put forward some suggestions with regard to pools but the difficulty is that they only ones suitable are just too expensive. We need somewhere quiet with a degree of privacy at least to start with, there are some ongoing enquiries so we can live in hope.
I think one of the issues that families face is that when a child is sick for a long time you have to live on one salary. This means that things you would normally replace as you go along have to be patched and repaired and there are only so many times that you can do this. We have finally managed to replace the downstairs sink, only to find that the bath has suffered some sort of damage!!! This meant a leak through the ceiling and is our next issue to resolve.
Just when things feel too much something always happens to brighten things up, I have taken 3 calls today and received messages to say that people are looking into how they might be able to help us . This means so much as there comes a point when you realise that you just cant do it on your own. That is very hard to accept but I cant thank each and every person who has come forward and offered us help and support. Things don't happen overnight but I am definitely starting to feel that community help might be quicker than waiting for red tape to happen.
We received a letter to say that we were on the waiting list for the disabilities facilities grant, and I think that it said we were a priority. The wording was a little confusing, and as I a an ex civil servant that is saying something !.If I have read it correctly even as a priority case they can give us no indication as to when we might even expect to get to the next stage. This means the more that we can do ourselves the better our chances are of getting what we need. So thank you to Mike B, Patricia, Liz,Sue and Trish amongst others for cheering up a despondent mum.
We have a meeting next week with Spirit FM and the Obsevor to see if they can help in any way, I am trying not to get too excited but this might be the only way that we can get things done before Tyler is retired.
So from the bottom of my heart a huge thank you to each and every person so has supported us . Please do keep the messages of support coming because sometimes it really does help us keep going.
I know things are so hard to deal with when your child's life is in the hands of others. It's so frustrating to see them suffer and have to put up with everything that life throws at them even though they have a positive outlook to it all.
ReplyDeleteFingers crossed and heres hoping that things move quicker and Tyler gets the things he needs, he deserves a better quality of life. He is an inspiration and I'm sure he surprises you every day with how he copes. Don't give up, you will get there in the end!!!
All our love, The Bosleys x