Birthdays

My birthday is less than a month away and I don’t what I want from my Dad.  I know what I am getting from my Mum because I have known about what I am getting for a few months now.  I am getting a kindle because everyone knows how much I love to read.  Playing scrabble with my Dad it is a Wednesday tradition back like four years ago and my vocab has grown, I even beat him last Wednesday by a few points, but like I was saying I don’t know what I want my Dad to get me for my birthday or Christmas, last year he got me a new TV and that was for my birthday and Christmas even though I did get something little for Christmas.  By this time last year I knew what I was all ready getting from my Mum and Dad.  There is one game that I want for my gameboy called Professor Layton and the miracle mask, or also I want an Xbox because I want to practice playing halo reach when it is raining outside and my TV is trying to find a signal and the pixels are out of order like how it is doing right now or my hip straightened out but I know that is never going to happen because there is nothing that they can do about it even though it is getting worse each day.  My birth date will the 12.12.2012 and I was born at 11.33am in the morning and I will be 28. 

My World

My world is full of colour at the moment because it is spring I love this time of year because the sun is shining and the insects are starting to come out and the flowers.  Last week I started back at Boogie Buddies after a three week break and we are in a different location now at my old primary school.  The YMCA brought the whole school.  I walk down there and it takes me half an hour to walk. It is really wired been back at school because it has changed and some things have remained the same.  Also this week my brother David has been down from Auckland for a final visit before him and his wife Toni are going to New Mexico to live Santa Fe/Los Alamos for the next two in a half years, they are leaving end of November.  My sister Bex is also going overseas to London Ontario to study for three months and then going to tour around the USA with her boyfriend and Europe with my Dad, stepmum and stepsister.

Schooling and Transtioning from home

I was mainstreamed all throughout my schooling and I went to a private school called St Georges from the ages of 7-13.  It really suited my personality quite a lot while I was there I spent quite a bit of time in the school library reading.  For the last two years there I become a librarian. When I got to high school, I went to an all girls high school around the corner from my Dad’s until my final year where they combined my school with the local Catholic

boys’ high school.  When I started high school there was a learning centre where I

could go to get extra help with classes or do correspondence like maths, life skills or

have one on one help to talk about things.  Mum also noticed that there was a

widening gap between my classmates and I academically.  For the last two years I went

on work experience I went to work at the local public library and also at a day care

centre which catered to special needs children.  After I graduated from high school I

decided to move in my Mum’s because I wasn’t quite ready to move out of home.  I

went and did a teacher aide course run through training for you for two years

because when I learn something new I like to repeat things over so they are stuck in

my brain.  I went back to my old high school through the mainstream employment  

programme it is a programme for disabled New Zealanders to create a job for them

in the workforce and Mainstream pays in the 1st year 100% of your wages and in the

second year they pay 80% of your wages and at the end of it you are meant to come

out with a job but my funding ran out at the end of the two years. In the same year

that I left Cullinane (my old high school). I started working for a family friend she is an accountant and I went and helped her do her filing and shredding every second Monday morning until I quit late last year.  I also started going to a place on Friday mornings for a social morning called Somerville Centre where I met my boyfriend of four years called

Bryan he is a computer tutor for them and I was a client and we weren’t allowed to

date.  We broke up four times over the four years and then got back together each

time.  I quit earlier this year because I increased my hours volunteering at the local

YMCA which I will talk more about later on and plus it was hard to retain a

relationship in that environment. When I moved out of Mum’s I had recently just

turned twenty four I moved into a house that my best friend Kayla from high school

her parents had brought her a house because they were getting older and wanted

Kayla to have girls her own age to live with.  Kayla needs carers around twenty four

seven because she is in a wheelchair (can walk with help and a walking stick), she has

epilepsy and has a mind of a six to seven year old.  Her buddy and my best friend Blue

lives out the back in a self contained unit without any carers only her Mum comes

and checks on her every single day.  While I was living at the house a girl called Kate

moved in and we were getting on so nicely until one day Bryan came round to show

me something on my laptop and I told everyone including the carer that was on

which was all fine.  Kate hid in her room and when he was showing me something

she turned around through Facebook while he was there was he still there and I said

yes he is there.  After he had gone back to work I asked her why did you say that and

her answer was like I don’t like strange able bodied men and after that we didn’t get

along at all.  She treated me like I was invisible and still does whenever I go over to

Kayla’s.  Another thing happened while I was in the house ACC took away a lot of

Kayla’s hours so most evenings I would be responsible for looking after Kayla and it

went on for at least a year until the team leader who is in charge of Kayla’s carers

encouraged Blue and I to write a letter explaining how we felt about things to ACC

and we got back a lot of her hours.  In February 2010 I was in Sydney visiting a friend

and I realised that I had outgrown Kayla’s so in April of that year I wrote my parents

a letter which I had handwritten myself explaining all the reasons that I was unhappy

in the house and that I needed to grow as a person.  My Dad and my stepmum both

read the letter and Dad changed his mind that Friday when he read the letter because

he said to me I am going to buy you a house.  We looked for a few months and found

the perfect house for me to rent because he wanted to for six months to see if I

could live on my own and I execced over by a year and a month.  After I moved into

the rented house Mum turned around to me one day and said out of ten what would

you rate living at Kayla’s and I turned around to her and said a 1 and she said what

about now and with a big grin on my face I said a ten.  Dad brought me a two

bedroom house in July of this year and I love it because hopefully one day Bryan will

move in with me.  My house is five minutes away from my Mum’s work also Bryan

lives down the other end of my street and town is about an 8 minute walk away.  I

volunteer three mornings a week one morning a week I go and work in a shop.  I can

serve the customers, dust, restock the shelves, go and do the banking for my boss I am the only volunteer who is allowed to go and do the banking.  Then the other two mornings I go and volunteer at the YMCA doing a programme called Boogie Buddies for two to five year olds it is so much fun and it is good therapy for me. At Boogie Buddies I set out a circle of mats on the floor when I arrive and then I help one of my bosses set up the gym equipment for the circuit that the children do upstairs. When the children arrive we ask them to take off their shoes and socks and leave them neatly along the wall and then we get them to sit down on the mats and then we do warm up exercise with them and then we do a warm up song like the bird dance, here comes a bear, the Hokey Pokey. After we have done the warm up song we tell the kids to set on the benches to spilt them into two groups, one group stays downstairs and the other goes upstairs to climb on the gym equipment and then downstairs we set up a floor circuit with hula hoops, a throwing target with beanbags, a wobbly bench with hula hoops one at each end and the children have to crawl through them. Sometimes we do other activities like at the end of the term we get out the parachute and put balls and feathers on the parachute and we have to get them off and then we sit underneath the parachute with all the kids and make it a tent. Another activity we do with the kids is we have four buckets of coloured balls around the floor and then when the music starts the kids have to put the right balls in the right box and so for the balls we have green, yellow, red and blue and us teachers go and put the wrong balls in the wrong boxes because we trick them into thinking we don’t know our colours. 

Extraordinary

When did I become extraordinary?  Was it the time I started reaching out to parents whose children have the same syndrome that I do?  I am just a girl from a little country on the other side of the world.  Sure I can do a lot of things that other people with my syndrome can’t do like move out of home and live independently on my own or have a wonderful boyfriend that I love more than anything or anyone (Mum comes a close second.)  Maybe I am extraordinary because I believe in myself and what I want to do with my life or the fact that nothing gets me down because there is a positive way of looking at things when things don’t turn out right when you have made plans.  I am a Kiwi girl trying to pave the way for others with Cri Du Chat maybe that is why I am extraordinary. Maybe its just me but I still want to be that girl with the rare syndrome playing on the trampoline while skipping with a skipping rope in her hand and having fun and laughing and not having a care in the world. To me I am just me a girl walking with a slight limp.  When I was growing up I didn’t realise that I would be extraordinary but I am in my own way.

The word “Can’t”

The word can’t isn’t in my vocab apart from a few expectations like for example me skiing up to the age of 13.  I could ski but not very well but I gave it a go until my hip started hurting because in skiing you have to ski straight and my hip would always turn inwards so for the rest of that year whenever my family went up to the mountain I would have to come to and spend the day in the cafe drinking hot chocolates, listen to music and write or take up a book and sit there and read.  A parent would come and check on me once in a while.  Another example is that I can’t drive because my concentration sucks.  When I was growing up from early on I knew my strengths and weaknesses if I can’t do something I find away round it or do it my way.  I think staying positive has helped and last year I went on holiday with my Dad my sisters were fighting over a double bed and I turned around to my Dad and said I don’t care where I sleep just as I get a bed to sleep in.  It is because I am grateful that I don’t have the full syndrome and knew that if I had the full syndrome a lot of what I do now would have been turned into can’t not cans.

My Week

My week has been eventful because I was curious about a Cri Du Chat video online and the comments that people were making I made the mistake of replying to one of the comments and what I got back well let’s say I am glad to have Cri Du Chat and try and change the minds of those people who say that we need to be shot at birth. If anyone wants to read that conversion just send me a private message or just comment on my blog.

My Mum is still away but comes home on Thursday morning.  I have been walking up the hill each day to go and feed the cats, last week I did lock my keys inside of her house.  My keys to her house not my keys to her house without realising it at the time so I walked down to my second Mum’s work who is also my Mum’s best friend work and she sorted out the rest and I got my keys back. 

My Dad is also away this week in Fiji with my stepmum which is pretty awesome because I am parentless until my Mum returns and when she does I am going to tell her that Dad and her need to go away more often together but not together because I am really enjoying not having parents around and there are other people that can help me.

I have started writing my speech for those people who don’t know me I like to be organised and I have written three paragraphs all ready and there is plenty more for me to write.

A lot of people know that Bryan is sick at the moment I heard from him on Friday morning and he told me through text that he is starting to feel better which is great that means I don’t have to worry about him that much anymore and we did mention Skype on last Saturday night.  For those people who don’t know Bryan has a rare syndrome like I do but his is one in a million.  His syndrome/disease is called Behçet's.

New CDC Families

I am a strong, confidant, beautiful woman who has reached out to a lot of wonderful, gorgeous and some amazing families. When I started reaching out to families I didn’t realise that there would be s many different families who have children and adults with CDC.  I remember having my first conversion with a Mum who lived in America on Facebook and she was quite amazed the things that I could do so the word quickly began to spread about me and what hope I could give to other families.  By that stage I was living in a house with three other girls and starting to do things on my own without my Mum’s help.  I started then writing my intro about myself to new families that I would send friend requests too.  These families didn’t judge me on the way that I lived my life.  They accepted me for the way that I am and what I have.  I am so honoured to speak at the Gold Coast conference next year and I am going to make everyone proud of me because this is my chance to tell my story about living with CDC.  Like Hannah said I have a very unique insight to what it is like living with CDC.  This is my perfected intro about me to new families for the moment until something changes and I will atomically update it. 

Hi my name is Rachel and I have Cri Du Chat but I am a mosaic which means some of my cells are affected but not all of them about 30%. I live in New Zealand and I live independently away from my parents in a house of my own and I have a boyfriend of four years called Bryan and I am 27.