For most of my childhood I was in and out of the hospital. For me this was hard as meant I couldn’t do things like go to school.
One of the things I did like was making friends, who I still keep in contact with today. Some of these people became like my second family.
The great thing about the hospital was the children’s hospital had a special fairy garden I and others could escape to when needing a break. This garden was my safe place and I sometimes wanted to sleep out there. The lady that made it is a real fairy and she helped me so much.
There was also a starlight room with games for people to play. We would also get famous people who came to visit. I met sports people,actors and even politicians.
All these things made it more bearable and easier to cope.
Over the years mum has tried many therapies with me to try and help me along the way. Each one has helped in own ways.
When i was very little i would have acupuncture. This is needles inserted in points of the body i found this greatly improved my life. It helped my tummy pain and made me feel better.
I had oesteopathy this helped straighten and strengthen my mussles and also helped my tummy. This involved massage and gentle preasue.
I had kinesiology as well this really really helped me.
I also have Neurofeedback. This changed my life. This is done with a hair net with eeg points. This is done through a computer that changes the brains pathways this helps me become calmer. And happier
I use a wheelchair for long distance and a walker other times. I can walk by my self but have poor balance. Sometimes i find getting around in certain areas hard because some people dont look where they are going.
For me large crowds are the most difficult because of my vision and hearing. I find it difficult to locate sounds in a crowd and it can be hard to tell what direction people are going. I like people to help me by paying attention to their surroundings as they can.
Mobile phones distract people and this makes it harder as I cant ask someone to move when they are talking on the phone. I also find when they are on the phone they wont look where they are going. This means I run them over.
I love that public transport is now so accessible it is really helpful and easy to get around compared to when I was little . I find the guards are helpful and friendly.
I think its great so many places are improving disability access as it has helped me a lot. I hope to see more improvements in the future.
I read of another person in my CHARGE syndrome community passing on. These losses can be hard for me because I remember the times that I nearly went. I get a little bit scared to.
I feel like I’ve known more people go than most my age but I allways try to remember that life is like that.
Sometimes I also loose friends not because they pass but because of other reasons. This can be hard to. I need to remember it is not all about me but I find it hard because I get attached to easily and then I get obsessive.