The trouble with facebook is

You don’t know what it like to be me.  You think that you do but you don’t you have no clue.  You think you understand but you don’t.  You think you know me but you don’t so stop trying too.  You don’t see me struggle every single day and if you did you would understand. 

I deleted a family member off facebook on Tuesday.  I am not going to say who it is because it is not who I am.  I didn’t like the way that my cousins and my brother and sister and I were been treated by this person, this person had tagged us in a photo without our permission and when I tried to defend my brother and sister and my cousins, this person didn’t listen to me at all.  I messaged him or her and told them that I was unfriending them and I gave my reasons why.  They turned around and told me that I was acting like a young child because it was over nothing.  It didn’t feel like nothing to me, it felt like I wasn’t being heard and it didn’t matter that my opinion didn’t count for anything.  This person needs to grow up and start acting their own age and they need to realise that we are adults not children and that we have boyfriends, girlfriends, husbands, wives, parents and lives to get on with.  This person also needs to realise that their nieces and nephews are grown and can make their own choices in life and needs to stop tagging them in photos or sharing things that they don’t want to be shared with the person’s friends.   Yes we know that there is an election coming up and hopefully everyone is enrolled to vote apart from those who are travelling or live overseas.  I am not going to accept this person’s friend request until they have learnt to step back and learn that the world doesn’t revolve around them.  This person needs to realise that people are allowed to unfriend them without them making a big deal about getting unfriended and no angry emails to the person who unfriended them.

Work

I don’t like it when someone is trying to help to do something when I know that I am more than capable of doing it myself.  On Tuesday mornings I go to a shop called Trade Aid and I work from 10-12 where I dust, I take my bosses banking down to the bank and I can now say good morning and how can I help you to a customer and slowly learnt how to use the till and served 8 customers on my own without any help from my boss or the other volunteer who works there.  My goal is to get up to ten customers all by myself and then my boss and I are going to set a new goal for me to work on because I am goal orientated and I get a new elephant.  I would have liked to get my new elephant on Tuesday but that wasn’t the case because the volunteer that I work with decided to hover over me while I worked serving customers at the counter.  I got so frustrated at her because she wouldn’t leave me alone to serve customers, she was two feet away at all times.  I know that I am a little bit slow working the till but I am getting a little bit faster each time that I do it.  I know how to ask for help if I need it.  My disability shouldn’t affect my ability to work or shouldn’t come into my work. 

My disability doesn’t come into affect at my job at the YMCA because I know what I am doing and if a little child comes up or stares  and asks about my bad leg I just answer honestly and just say yes I have bad leg you can balance better on the balance beam better than I can.  I love working at the YMCA because myself confidence has grown in me and the ability to teach young children about people with disabilities and there are different people with different abilities.  You have to look past the disability to see that they are just like you.  All I want to be is accepted at work.

My thoughts

It is sometimes hard being trapped in the CDC world and in the normal world because there are some things that I can do and I know that a lot of other people with CDC can’t do.  A mum asked a question in one of the facebook groups this morning about what some of other the CDC children’s favourite toys and I quickly put down being me.  My laptop, my gameboy and my ipod but there is one other favourite toy that I do have and that is Bryan.  I know that he is not a toy, he is a human being.  Looking at my CDC brothers and sisters sometimes and realising that they are not going to experience the same things that I do but I know that they are loved.  I can live inpendently, have an amazing boyfriend, have two wonderful jobs and I can walk everywhere around town and on Friday my Dad is going to Euproe for six weeks and about three weeks later my Mum is going to USA for six weeks she is going to travel route 66 and go and see my brother and sister in law.  So there will be a crossover period of three weeks when my parents won’t be around but there will be people around if I need their help like Cricket (she is my boss at Trade Aid.) I will go in and annoy her every single day and there is Jenni (my second Mum/mum’s best friend) and then there is Bryan.  Plus I don’t have to walk up every single day to go and fed Mum’s cat.

I am a voice for CDC

I know I haven’t written my blog for almost a month but I couldn’t write because of Crede thank you for all the messages on facebook it means the world to me and his ashes are in a box from Trade Aid at home on the mantel piece surrounded by my four big of my elephants and I talk to him to every single day. If I can change one parent’s point of view of CDC, I have done my job.  A lot of my CDC brothers and sisters are non verbal or have limited speech so they can’t say how CDC affects them or how it impacts their life.  I have been introducing myself to families over four years now and I have made friends in a lot of different countries and I love what I do because I am of the only few who can explain what CDC is and how it affects me as a person there is a song called “You’re the Voice” by John Farnham which really relates to me because I am one of the voices for CDC.  I reach out to a lot of new families once a week through facebook because they think they are alone in the world with a child of CDC.  New parents that I meet ask me all sorts of questions and I try to answer the best that I can and I have showed my video of to my speech if you haven’t seen it and would love to see it just contact me through facebook and I will give you my video to watch.   You won’t see it on my profile page because there are some things in my video that I didn’t want some people to say but I know where I have put it on facebook.  I am one of the admins for a group and a page because the other admins don’t always see if a person has posted and I love meeting new people and telling them what I CAN do not what I CAN’T do but I do some things that I can’t do in there too.  Because no one is perfect in this world.   Also I read a lot a passion that started when I was five and is going to carry on for the rest of my life as well.

Crede

I lost one of my best friends last night and he couldn’t talk but he gave so much love to those who knew him.  For those who don’t know my six month old kitten was perpously hit by a ute last night about seven thirty as I was watching tv one of my favourite programmes shortland street.  Shortland street is a New Zealand tv show and Crede was outside for about five minutes before I heard a knock on the door and so I opened the door and a man standing there told me that Crede had being run over and so I went out onto the street with my cellphone and texted Mum and then Bryan to let them know what had happened.  It turns out this guy who saw the whole thing said that there were two men in a blue ute perposuly hit him.  Just twenty minutes before he was inside just purring away and lying beside me with his head in my lap.  

Crede was named after Cri Du Chat syndrome and he was the most beautiful kitten ever.  I got him for my 28th birthday and I wanted a kitten when I moved into my own home and so Bex (sister) and Mum surprised him with me.  They got him from the SPCA and he was so fluffy and tiny.  I called him my little man and my little boy and every where that I went Crede followed and if I got any of my chargers of my bedroom and into my living room along would come Crede and he would chase and play with them.  Couple of weeks ago I had put couple of things on the floor including my orange teddy that had my name on it.  Out of the bedroom comes Crede carrying my orange teddy by the head and takes it up onto the couch and starts playing with it.  He had another teddy of mine which he claimed that early on as well so someone tied some string around the teddy’s neck and Crede would pounce on it and claim it as his own too.

Crede was a climber he figured out to climb on my Christmas tree at Christmas and the screen door between my front door and the outside and the neighbours roof.  When I got home from town I would call him and he would coming running from the neighbours gardens and when I went to go and get fish and chips he would follow down the road and so I would pick him up and carry him all the way home and then close the garage door and then just leave him inside while I went and got my dinner. He would sleep on top of a mattress in my garage. 

Today I felt lost without him and I miss his company and I would do anything to get him back to play with him and allow him on my bench and have snuggles with him in bed before I get up and get ready for the day because he would purr and just have time between us.

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.