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.

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.

Facebook

The other morning I logged onto facebook as usual but when I did I got a message from facebook saying that I was sending to many friend requests and if I knew all of my friends in real life.  I clicked no and if I send any more friend requests I would get blocked from facebook.  My first thought was I am going to lose all of my friends that I have made through all the CDC facebook groups.  My second thought was to write to facebook management and explain the situation to them and why they shouldn’t care how much number of friends I have.  I love facebook because it gives me the freedom to talk to parents and grandparents and other family members with CDC children.  I have made so many lifelong friends through facebook and without facebook I would be lost because I have learnt so much through so many wonderful families and they have learnt things from me too and with only nine other families living in New Zealand with CDC the world doesn’t seem so far away.  I feel that I can reach out to many more families and share my story and I have started showing my video of my speech to new families that I have contact with over the last six weeks because I wanted to show them what a person with CDC could become within their own abilities. I am not changing my profile picture because I give CDC a voice every single day.   In conclusion I am going to keep on sending friend requests because facebook should understand what I am doing trying to change the world of CDC parents.