One of the most unusual weeks of my life !!!
It has been a little while since my last blog and I almost don't know where to start .
As many of you know we have been trying to fund raise for Tyler and it felt like an impossible task to reach £30.000. I have known for a little while that the Observor Spirit FM might be getting on board to help us. It almost felt to good to be true though, and it didn't feel real until Stuart McGinley, Stephen Pickthall, Robyn and Justin turned up to film. That was over a week ago and I have not been able to say anything until the launch today . I've been like a cat on a hot tin roof.!!!!
But I get ahead of myself so much else has happened .
Just before we went on leave I sat on my first children's board, I felt extremely honoured to have been asked. It certainly helped clarify some of the issues that local hospitals are facing . It was also a fantastic opportunity to highlight the issues that young people face around transition . I must have said something right because the main topic of the next meeting is Transition !!! I just hope that I didn't take up too much of the meeting !!!
I still find some things difficult to understand though, I have been trying to contact Tyler's key worker for weeks after a cancelled appt. I have sent 3 texts , each of which comes back out of office, I will contact you tomorrow. The current one says that she is now on leave until 8th August. This is despite promising to ring me on 9th June , I really need to talk to her and apart from anything arrange a swim for Tyler. I think its simply unacceptable that someone can promise to ring in June and we are still waiting in August. I have now had to email the office manager , but I am really not holding my breath any more . I am not sure where to go when professionals simply do not do what they promise to , Quality Care Commission??
Holidays
Well we didn't quite get the weather that we hoped for but we still had a lovely break at Paul's Fund/The Old Bakery . This is a wonderful B&B run by the amazing David and Pippa, it runs jointly as a B&B plus a charity.
David and Pippa sadly lost their son Paul to a brain tumour when he was not much older than Tyler. Instead of giving in to grief they set up Paul's Fund in his honour . This allows families in positions similar to us the opportunity to take a break that they might not otherwise get.
They offer a warm welcome and make you feel completely at home, plus there are wonderful cooked breakfasts!
Before we set off I wondered how we would fill our time, I also wanted to find a treat for Ben and Tyler . We managed to keep this as a surprise and you can imagine Tyler's face when he found out he was going to swim with a Sea Lion. Tyler is much better in water than he is on land . It was fantastic to see both my boys having a ride with the sea lions, the sun came out for some of the day and it is certainly one of those days you will never forget . It was also lovely to have a walk around some of the steeper bits of the park with Ben, even if he did get a bit closer to the wolves that he should have done .
We also had a brilliant day at Westward Ho, Tyler had a go at crazy golf and even though he fell over a few times he just picked himself up and carried on . To top it off he even had a go at go karting and had a go in the amusements. This may not sound much and it took a huge amount of effort, but it showed that as a family we can have a day out that everyone enjoys . Especially when they serve the biggest ice creams .
This is not to say that we don't have to plan things very carefully and thoughtfully but it does show that life can be fun. I don't think there are enough accessible activities for disabled people and that this needs to be addressed.
Another trip that we had was to the Cinema, Cine world have always helped us out enormously , this was not the case with the local cinema. Our film was due to start at 1.30pm so we turned up at 1.20pm to allow Tyler time to get to his seat . Unfortunately the doors were locked and it was pouring with ran. Tyler can not stand at any lenght at the best of times, I motioned to a member of staff to ask if he could sit inside. She advised that due to health and safety he couldn't, but she would try to find him a chair for him to use on the pavement. Naturally he didn't wan to do this in the rain.
When the doors finally opened , 99% of the Que pushed past us and rushed for the ticket Que, nearly knocking us over. One little lad saved the day and held the door open for us, I wish I knew his name to let him know how much his little act of kindness meant.
We had booked premier seats to allow Tyler extra room, unfortunately they were just higher up meaning more stairs! The film was OK but I would not go back to that cinema under any circumstances, it will be Cineworld from now on as they clearly think of their disabled customers .
We also ate loads , relaxed and simply spent time as a family which was lovely .
So back to reality .
It had been great having no Internet or mobile phones, I really must try to overcome this phobia.
A busy week ensued but all really positive, a lovely meeting with Katie in Salisbury's as they have picked Tyler's Trust as their Charity of the year. We won the vote overwhelmingly which was fantastic as it was voted for by local people, so thank you to each and every person who voted and Trish for nominating us .
We Will be there for a lot of next weekend so please do pop along and say hello.
Filming
There was then the filming with Spirit which was both nerve racking and exciting at the same time . I think some of our neighbours wondered what was going on .
We agreed that we would go over to the studios the following week for Tyler to take part in a show with Stuart. On arrival Stuart had a grin on his face and a horn in one hand and a bell in the other !!! My nerves increased slightly!!
We found out that we were doing a quiz, the teams were Stephen and I v Tyler and Simon, you will have to listen to Spirit to see who won. It was actually really good fun , I just hope that I didn't come across as too nervous .
Following this I had my birthday celebrations as wait for it I turned 50!!!!!! I guess its just a number but still feel old . I really really need to find a way to get fit , I think what I need is a makeover.
What was lovely though was that my sister and family came down to celebrate with us. I was treated to a day shopping a a lovely meal out at Casa Brassila, although we didn't realise that it was a Samba party and that there would be dancers etc
I am also thrilled to be having my lovely niece and nephew staying next week. We just don't get to see enough of them, they may have to help out at Salisbury's though.
I had been feeling a bit down prior to all of this and wondering how on earth I was going to sort things out for Tyler and us as a family . I actually started to miss being able to work, that is not a moan I am so grateful that I am able to be here for Tyler, its just not the future that I saw for either of us . I think that Spirit FM and the Observer came to the rescue just in time. I try not to expect things of anyone but sometimes it is the people that you least expect that step in and help, I love receiving the little messages of support so please keep them coming . We have a long way to go to get everything we need but this is am amazing start .
We are now also busy planning the Tyler's Trust fun day , so if you are one of our families or would like to help please do get in touch.
Finally are you able to support the Spirit/Observor Campaign to help us raise the £30,000 that we need . If you saw Tyler struggle trying to get out of the gate in his wheelchair you would realise that the sooner we have this done , the sooner that he can get on with his twenties.
He lost his Teens please help us give Tyler his Twenties , take part in Together for Tyler with Spirit and Observor. If we can we are happy to come along to event s.
The lovely Patricia has already arranged a bridge afternoon for next week which we will be popping into. You could have a go green day clothes or hair!!!! Host a quiz,coffee morning,table top,sponsored event, the list is endless.
This is the first time that Spirit and the Observor have worked together making this something really special so please join in.More information can be found at :
janice.ellis2@btinternet.com 01243 553280
https://janiceell.blogspot.co.uk/
http://www.bognor.co.uk/news/video-together-for-tyler-campaign-launched-1-8085080
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