13 days on we have the start of a plan

Jonathan came home last night! Hurray
We still dont have a treatment! Boo
We are being listened to though, at last. Almost two months after we realised his anxiety issues were spiralling out of control a Dr has said.....His anxiety issues are spiralling out of control....ahh a doctor has said it so now someone is taking action on that basis! SIGH!

So just as we suspected back at the begining of the summer holidays, Jonathan is reactiing in a bizarre fashion to the sensation he gets from the episodes of heart arythmia. (VT). He is unaware of what he has done, but is aware something bad has happened and it is somehow his fault. He is extremely hypersensitive to sudden unexpected noise and it is thought this has triggered VT, he is now anxious about returning to places where these episodes have happened. It is possible his anxiety is triggering VT. So we have a self perpetuating cycle of fear of an event actually causing one, and So his anxiety is increased, and his comfort zone is shrinking. Basically he now only feels secure in a quiet room, at home that means he is anxious about leaving his room. At college he is anxious when certain students are around....some are prone to sudden shrieks. Yet he loves college and has a good relationship with his peers there. He wants to go to the supermarket but once we get to the Checkout Queue he starts to be worried about the noise and begins to shake, to look around and to want to run out. THis has escalated now to the point he would not get off the bus when college went to Morrisons. Despite wanting to go shopping he couldnt get off the bus to go in the shop.
So he is going back to college today. We need now to know at what point he is just anxious and when the VT kicks in.

Meanwhile we have had a terrible start to the school term for Joshua and Christina. Whilst Joshua is finding his VI equipment a wonderful improvement, the staff at school are struggling to understand his need. His new camera can capture any text and transfer it to his computer as a document he can scroll through enlarge and have read to him. But some teachers are still wanting to photocopy books/papers etc and enlarge onto A3 paper. Others are handing out photocopied normal text items that are not good quality and the camera struggles to recognise.
Still others are still wanting him to write out things from the white board, but he cant read his handwriting! He needs to put things on the computer. Other staff are great, have suggested he hands in memory sticks with homework on rather than printing out stuff! So his fund created from money donated after the sponsorship money bought his camera is being used for memory sticks and other peripheral bits he needs.
There was a really awful low moment for Joshua last week when he sat to do his RE homework. He had to draw a time line of his hopes for his future.

He sat at the table looking at his screen, his face paled, his sholders slumped and his eyes closed. At first I thought he felt ill. I asked him what was up....he turned and looked at me with a lost look in his eyes. I have to draw a time line of what I hope for, but all I can think of is what I hoped for and now wont be able to do!

David and I were so stunned we found it hard to respond. He was now sat facing all his hopes and dreams now in tatters!

We started to look at all the things he enjoys doing. Cycling, he and David have now got a Tandem, they have only managed to go out twice on it so far but it is something they hope to do more.
Archery, the club have promised to support Joshua as a blind archer. His photography, he is no longer able to conentrate so much on sport and action photography but he still does take some good photographs. He thought ablout that one and decided he had wanted to become a professional photographer, but that was no longer going to be a possibility so he wants to sell his camera and concentrate more on his Archery.
It was a total body blow for us all but has left Joshua in particular reeling from the sudden awfulness of having to face his future so starkly without having had the tinme to really adjust to how things are for him now.

There are other issues at school, I think I have been in nearly every day this last week, I have now written a letter to the head in the hope of getting a face to face meeting to discuss the concerns. talking to one member of care and guidance does not seem to be helping we seem to have one issue solved and another caused. Christina seems to be in a really difficult period at school, I dont doubt some of it could be of her making but school do not seem to be addressing things in the best way at all.

To cap it all, David has come down with a stinking cold, it appears to be heading for his chest and has kept me awake much of the night with his coughing., sniffling and groaning!

On a brighter note the Hospice support worker came out last night, to talk with David and I then took Joshua and Christina out one at a time for tea and a chat! It seemed to go well. He desperately wants to help. I dont know how much he can but his desire to help is wonderful.

I do not know what the future holds! But I am glad I know who holds the future.

It has been hard these last few weeks to keep clinging to that knowledge that God has his hand on my life, That He wants only good gifts for me. But cling I do...somtimes just barely with my finget tips, so glad of the assurance that underneath are the everlasting arms....
So pleased to know there are many people praying, and knowing that the promise of the Spirit interceding for me when I know not what to pray is a true and sure promise from God.

It is so much easier to pray sincerely for others.....many times I woke in the night and was reminded of the prayer needs of others, Sara and Alan, Tia and the girls, Friends with huge problems in their lives I am not at liberty to name on the blog, but huge prayer need around me. Like a swap shop of prayer requests knowing others are holding our family in prayer is so reassuring.

Onward and Upward, a new day dawns. hmmm half six and no sign of Dawn yet....I guess thats the end of the sun for a while then!!
Tina!