My speech therapy

If I can change one life in a positive way then I have done a wonderful thing.  It is amazing to change someone’s life when I began reaching out to people I didn’t realise how many people’s lives I would touch.  I am just a girl from New Zealand who has a rare syndrome and a rare form of that syndrome.  There are only 1.5% of mosaics in the CDC population.  Parents who have very special children take a very different part to those who don’t have special children.  A lot of you know that I went to speech therapy when I was little to help me speak properly and I was still am tongue tied but I had an operation in fourth form to snip my tongue from the roof of my mouth so I could talk properly.  I went to speech and drama for a year so I could learn how to talk properly again and learnt the poem “Sir Smasham Uppe” and at the end of year school camp in fourth form I performed it as a skit with one of the naughtiest girls in my year and we came in third overall.  When I was in fifth form we had to write a short story for a competition that my English teacher was running for our class only and it could be about anything at all and I wrote my short story in like a day and I came in second and I got a big block of chocolate which I shared with one of my best friends Lea.

My Hips

Couple of days ago I walked to a bookstore in town so I could put money on my phone so I could text my Mum so I could work out what I was doing that day.  Even before I got to the bookstore a man noticed my leg turn inwards and he shouted to me “Did you have an accident?”  I ignored him and carried onto the bookstore.  I wanted to turn around to him and tell him “No I was born this way and if you have a problem with the way that I walk take it up with my missing chromosome or otherwise mind your business.”

That was the second time in about three years that someone has noticed the way that I walk.  A few years back I was in a store looking at DVDs when an older man in a scooter asked me if I was pigeon toed and I told him no I was not and had a rare syndrome.  I dropped the DVD that I was looking at back on the shelf and quickly got out of the store.

My balance isn’t that good on uneven surfaces because I will fall down a lot and hurt myself so I don’t walk and text at the same time because I need to concentrate walking.

I know that I won’t even win an olympic running race because I can’t run fast but that is all right with me who needs an olympic gold medal for running anyway it is all right to be me.

Friends

Having friends what make the world go round.  From the early age my brother has being one of my best friends because I think I learnt a lot from him like when climbing up on the bathroom sink and into the bathroom cupboard you need a look out person for any parent around to see if you would get caught sneaking the fluoride tablets down because I wanted the container that they came in and I thought my younger brother should be the lookout person.  As we grew older we each had our own circle of friends, he would have his friends over to play on the xbox, play station and I would sit there and watch them play hoping that it would be my turn next.  Throughout my childhood I would have one best friend called Elizabeth and we would go and over each other’s houses to play and create craft things her mum was really into craft stuff.  In form two I had a best friend called Angelina and we would always end up at my dad’s house and walking around the lake singing songs. I had another best friend called Harriet, Harriet and her sisters were my parents best friends and about once a month we would go across to their house or they would come across to ours. During high school I had four best friends Gabby, Lea and Jess and Kayla.  Gabby and I used to write letters when she went to university and that was really neat and we both loved Roswell and the pretender even she helped me write backwards “There are pretenders among us.  Geniuses with the ability to be become anyone they want to be.  In 1963 a corporation known as the Centre isolated a young pretender named Jarod and exploited his genius for their research.  Then one day their pretender ran away.... “across the blackboard in the learning centre at lunchtimes.  Jess was the funniest best friend that you could ever have and the kindest, loving person.  She was born one year and one month before me.  Jess was really sick she would have to go to the hospital every third Friday and get needles in her arms to make her stay alive, she had Common Variable Immunodeficiency (CVID).   She was one of the first people that I told about Bryan and we would have a nickname for him Jamie out of one of Diana Gabaldon’s books one of the main characters.  When we first started going out because we weren't allowed to date because of the staff member and client dating rule. Jess taught me a lot of things like how to be a good friend.  Jess and I had a falling out about a year before her death over something small.  She died two years ago in April she was really sick when she died.  I met Lea at the end of fourth form she came from Switzerland with her family and I remember at her seventeenth birthday party she had a sleepover with both girls and boys she lived on a farm out in the country, we got up to mischief that night without her parents realising our antics.  The first time I met Kayla when I was sixth form and she was in third form, Kayla is in a wheelchair and has epilepsy and cerebral palsy and brain damage from when she was shaken as a baby but I would still hang out with her at lunchtimes and we would go to helberg sports days together which was a lot of fun.  I moved in with her for two in a half years and we still hang out together every month for afternoon tea with my other best friend Blue.  My other best friend is Bryan even though he is my boyfriend I still count him as one of my best friends I can tell him something and he won’t get mad and if I am upset about something he will cheer me up.  I have made some awesome friends through facebook who like me for me and not what I have.  Friends don’t count missing chromosomes.