Friday 28 June 2013

A Change Is As Good As A Rest

In less than a fortnight I will be moving south to a new life in Yorkshire.  I am really excited to be moving. I'm looking forward to starting a new school and making new friends and I am looking forward to much better healthcare.  I'm also looking forward to being able to visit by grandparents much more easily.  

I am looking forward to exploring Yorkshire, getting to know cities like York and Leeds and enjoying fresh air and beautiful countryside.  I love history, so I am especially looking forward to exploring all the historic sites and learning more. I looking forward to being able to go to London easily, not just to see friends and family, but also to visit all the museums, galleries, see Chelsea, go to Wimbledon and go to the theatre.  There is so much I want to do.  I've also heard about the Museum of TV and Film in Bradford, which has an exhibition about films based on children's books, I am definitely going to go there.

I came to Scotland when I was 18 months old to be closer to my auntie and her family.
I have packed a lot into the last 12 years.  

I would have loved the opportunity to go to school much more, I absolutely love school and learning new things and I always try my very hardest, so I have been very sad that more has not been done to provide me with more schooling and education.  Until I was 10, most of the time I had none at all and since then I have mostly had just two hours a week.  At times when I have been well to attend school but I haven't been able to do so as no nursing cover has been provided.  I even wrote to the CEO of my health board, but he never replied to me.

I feel as if my health problems have been used as an excuse for not providing me with support. There have been lots of times when I have been too poorly to go to school but not too poorly to learn and would have loved to have been able to learn more.  I noticed when I was in hospital that other children did get a teacher every day, it was the children with disabilities who did not, which I think is really bad.  In other places all children get daily hospital teaching, not just the non-disabled ones.  When I was in hospital in Leeds earlier in the year the hospital teacher came to see me every day, even when I was really poorly.  At Yorkhill as soon as I was referred the teacher there saw me everyday, so it seems to be a particular problem in Edinburgh.  If some one reading my blog has the power to change things so that all children in Edinburgh get hospital and home teaching everyday if they are not well enough to attend school, I will be very happy (although they may not be if iike me they don't love school)!  Thankfully my mum, dad and my nurses have done all they can to encourage me to learn as much as I can, even if I haven't had much proper education.

I have met some wonderful doctors, nurses and therapists, but I have also had really awful times, with doctors insisting I was not ill and even leaving me to "crash" before giving me proper care; doctors not bothering to review me in A&E claiming I wasn't particularly poorly, leaving mum and dad to drive me in the middle of the night 50 miles to another hospital to get the care I needed - in that case PICU and ventilation for almost three weeks.  I have been left alone in rooms in hospital having seizures, with no care and support and absolutely terrified. I have been left out of all the fun things that happen in hospital, even though I spend much more time there than most patients. Perhaps one the worst things has been doctors who say really nasty things about me, in front of me, thinking I can't understand and who never talk to me, I really hate that!  I will miss the good nurses and doctors who have looked after me, but I certainly won't miss the bad ones, I wish I had never met them, they have really hurt me too often.  I really hope I only meet good nurses and doctors once I move.

But life in Scotland has had good times too. I have loved going to the Book Festival, listening to brilliant authors talking and meeting them.  I have been every year apart from one, when I was in hospital for the whole time, so I have been to 11 book festivals.  May be one day I'll come back to the Book Festival with my own book of poems!

I have absolutely loved the time I have spent at Forthview School.  My class and teachers there are absolutely brilliant and I will really miss them.  

I have loved raising money for organisations that support children with disabilities, especially thinking of fun ways to do so. I have raised almost £10,000.  I hope my efforts have made some difference.  When I move I want to continue my fundraising, I really do enjoy it.  I am already going to help the Leeds Children's Hospital Appeal by volunteering at the Leeds 10K, they are going to find me a job I will be able to do with some help from mum.  Fingers crossed it doesn't rain!

I have won a number of awards while I've been here:-

2010 Brit Writers Outstanding Achievement
2010 Gold Blue Peter Badge
2011 Young Scotland Rising Star Award
2011 Scottish Book Trust/Jacqueline Wilson runner up in short story competition
2012 Young Scot Arts Award
2013 Amnesty International runner up song lyrics competition

I was also included in the Scotman's List of people who had put Edinburgh on the map in December 2012 and included in the Independent on Sunday's Happy List in April 2013.  I suppose that is not bad for a 13 year old.

I've loved writing my poems and short stories.  It often takes me a long time to write, sometimes several weeks to write a poem, but doing so makes me very happy and I hope my poems have made other people smile too.  Christmas Gibbons getting to number 2 in the iTunes Children's Music Chart was really exciting too.  One day I would like to get an illustrated book of my poems published, if people bought it I would donate part of the profit to charities so that as many children with serious health problems could benefit and use some to buy a system so that I can use a computer by blinking. I would use it for school work and to write more poems, stories and song lyrics.

There are lots of beautiful places I have enjoyed visiting, the Borders, Perth, the Botanics, North Berwick and St Andrews just to name a few.

I have loved going to the theatre, my favourite was seeing the Snowman Ballet a long time ago, lots of the children's shows in the fringe and the pantomime.  I loved going to lots of the Children's Classics Concerts at the Usher Hall, the pirate one was particularly brilliant.

The Museum of Scotland and My Dynamic Earth are both places I have spent many happy hours and I always love going to Holyrood Palace.  The staff are always really friendly and helpful there and I love listening to the stories about all the old kings and queens.

Visits to the Scottish Parliament have always been fun, I particularly enjoyed the day I was asked to tell the Labour MSPs about my experiences in hospital.  I was also very proud that I inspired an exhibition of art work by disabled children for Contact A Family.  I have had letters of congratulations for my awards from the Queen, the Prime Minister, The First Minister and the Children's Minister.  I'm surprised how many MSPs seem to know my name, I hope that they use my experiences to make life better for other boys and girls in Scotland.

I will miss all my friends young and old, but I hope all my friends in Scotland will keep in touch and continue to fight to make Scotland a better place for all children, but especially those with serious health problems and disabilities.

Good bye Scotland and thank you for all the good times!