Love part 2

As Christmas, my birthday and my anniversary of when Bryan and I first hug approaches.  I realise that I am lucky and I am grateful for everything that I have and that is why I love giving back to Cri Du Chat families.  Almost five years ago on the 18th December I went to a Christmas party that changed my life in a good way forever.  That’s where Bryan and I’s first hug took place and I can’t believe it is being five years all ready.  He came into my life when I need him the most.  He was the first person that I told that I was moving out of home apart from Mum who was really the first.  We have survived four break ups and gotten back together after each one.  For those families who are new and don’t know the story of our relationship, I will tell you the short version because the long version is really boring and long.  Bryan works at a place for young adults who have disabilities where they do life skills, socialise and do fun activates during the week, computer skills also.  I went one Friday morning because I had lost my job at Cullinane one of the high schools in Wanganui (my hometown) and on Monday evenings I took their cooking classes.  I walked in on the Friday morning not looking for love but love found me, I noticed a cute looking guy in the computer room and I said to myself he is good looking but not to my knowledge or later on he thought I was beautiful looking and asked one of his bosses questions about me and he turned around and said to Bryan that I was coming on Friday so he could ask me questions himself.  I can’t actually remember what happened that Friday but I think both of us started flirting with each other. This continued over the next few months.  On my birthday that same year I was walking down to Sommerville and came across him walking to Sommerville and I told him that it was my birthday and he said happy birthday and when we got to Sommerville another one of their clients turned around to us and said you are dating and we both looked at each other and said no.  On the 18th December Mum dropped me off to the Christmas Party and found myself flirting once again with Bryan and ended up having a really awesome time, I don’t usually do so well at parties or social gatherings because of my sensory overdrive.  Towards the end of the night Bryan and I hugged and he quietly whispered in my ear “I know that you don’t want me to go sweetie but I have too.”  I really then knew that it felt right hugging him and ever since then.  It was about eleven months after the Christmas party and several months after our first break up before we had our first kiss, Bryan had come over to Kayla’s (best friend as well as old flatmate) to look at something on my computer and none of my flatmates were home and we were in my bedroom and we both leant over and kissed.  It felt wonderful and magical at the same time.  This time last year if you told me that I was going to quit Sommerville in May of this year I would have laughed off the suggestion because I don’t like changes in my routine but I knew something had to change and I was the only person who could make that change because I couldn’t ask him to do it so an opportunity came up in May to work two mornings a week at the YMCA and so I took it because I knew that I couldn’t do it anymore have a relationship with everyone watching and retain a relationship in that environment so I took the biggest risk and it paid off big time.  I know that I don’t get to see him each Friday morning but that is all right because we Skype, Facebook and text each other and we have date night once a month I know that sounds like a little at the moment but it is the best that we can do at the moment and he lives down the road from me.  He came around on Friday night after dinner and spent two hours at my house just hanging out and both of us are glad that each other in one another lives.  He makes me happy.

Mosaicism

Everyone knows that I have Mosaicism but what just is Mosaicism you ask?  Mosaicism means that some of my cells have 5P- have in them, I have 30% of my blood cells are affected.  I have a very large deletion in my cells, actually I shouldn’t be doing the things that I am doing like talking, walking, living independently, having a boyfriend, writing, reading, cooking dinner and going food shopping by myself.

There are some downsides having Mosaicism is that I don’t like crowds because I go into sensory overdrive and I really don’t like really noisy places or any social events with over twenty people that I don’t know or I do know but don’t how to socialise properly.  Next week is my Mum’s birthday and she asked me to today do you want to do lunch or dinner next Thursday for my birthday and I turned around to her and said lunch and Bex can join us for lunch to celebrate.  Even if we go out somewhere like that I take my gameboy so that I can sit and play on it while everyone else is busy.  I get really tried quickly if I go into sensory overdrive. 

I love my routine because I know what is going on and where I am and what I am doing.  I love mornings because I can better concentrate on something in the mornings better in the afternoons because I need to take breaks from what I am doing or otherwise I think I would lose focus on what I am doing that is why I only work on Tuesdays from 10.00am until 12.00pm.  Thursdays and Fridays mornings from 9.00am until 10.30am (my disability doesn’t come into my role at boogie buddies) and on Monday mornings I sleep in but I think that is going to probably next year and then I go and do my grocery shopping with my caregiver but she didn’t turn up this week so I went and did it on my own and stuck to my list and on Wednesday mornings I do my housework while listening to music and dancing, most Wednesdays I have lunch with my Mum to catch up and to swap magazines and to shop.   Then I go up to Dad’s for dinner and hang out with Dad and Andrea (stepmum), Abbie (stepsister) for the evening and then Dad drops me home.

I have a slight intellectual disability but it doesn’t stop me from living my life and I have a really supportive and loving family who would do anything for me and a really handsome boyfriend that who loves me no matter what happens.  I think I have paved the way for other CDC children to fulfil their goals no matter what they have to overcome to reach their goals.

I am a daughter, sister, person living with a disability, an aunt, a friend, a granddaughter, a niece, a girlfriend, an inspiration, a role model, an adult, I am a cook and a member of society, a cousin, and a light in this world, I am all of these things and so much more. I have CRI DU CHAT SYNDROME!!!

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.

My life story part two

When I left school at the age of 19, I went to a training course for two years called training for you to study to become a teacher aide because I wanted to become a teacher but I didn’t have the marks to go into teacher’s college.  The reason why I did two years is because when I am learning something new I like to repeat things over and for the second year I had a writer for all of my tests and the second thing happened was I moved into my Mum’s because I didn’t like going backwards and forward to each house.  I saw one of my old tutors about a month ago up at the library and it was awesome to catch up with her and what she had been doing over the last few years.  When I left training for you I started working at my old high school as a teacher aide’s assistant for two years under a programme called mainstream which is a programme for disabled adults it is a supported employment programme where the government pays 100% of your wages for the first year and the second year the government pays 50% of your wages as well as your employer pays the rest and you are meant to get a job at the of the  end of the two years but my funding ran out.  In the September that year I started working for a family friend doing her filing and shredding every second Monday morning until at the end of last year.  Also in that September of that year I started going to Bryan’s work on Friday mornings because every second Monday I went to cooking until I gave it up early on this year.  Also when I was working at my old high school, my wallet got stolen by these two boys as I was walking home from school.  I had taught one of them in the learning centre for English by correspondence.  I like expressing myself through words because my body doesn’t connect very well with my brain and it’s just easier to write because my brain still works it’s just my body that won’t work.  Over the years I have learnt to skip on the trampoline, do a tapestry, learnt how to play knucklebones, shoot hoops on my Mum’s driveway, travelled to Australia twice by myself, learnt how to swim, went to Brownies and then Girl Guides where I became a group leader in my final year at Girl Guides, learnt how to ski but had to give it up when I was 13.  I know all my strengths and weaknesses.  I understand a lot more than what people realise and sometimes when I talk I know what I want to say but can’t get out the words that I want to say.

My Mum

Every year my Mum goes away to Bali for 3 weeks on holiday and I get to feed her cats but I get paid $10 a day to go and walk up the hill to feed them.  It is a five minute job but it takes me an hour to go and do it which I don’t mind doing.   My Mum has being my biggest support so has my Dad.  When I was little after I got diagnosed having Cri Du Chat and began speech therapy, my therispt at the time wanted me to learn sign language and Mum turned around and said that I would speak in my own time, which I did.  Growing up I was treated normally as possibility and no friends of my parents would turn away just because I had Cri Du Chat.  My Mum is a lawyer so she works really long hours but she is always there for me whenever I need her.  Her work is about five minutes up the road from where I live now which is always handy.   When I finished high school I decided that I wanted to live with my Mum full time because I didn’t want to have to go back and forth from each house and so did I, when I moved out of home early 2009 we decided on a day which we would have lunch and swap magazines so every Wednesday my Mum picks up in her Porsche and takes me out to lunch and in the weekends we go down to the market together on Saturday mornings and then I go up to their house on Sundays for lunch because I  can catch up with my stepdad Rob.  So for the next three weeks I won’t have any lunch dates with my Mum on a Wednesday but that is all right because my Mum deserves a holiday and even though I will miss her.  I have other people to go and talk to or text to like my brother, sister, Dad, my stepmum, my boyfriend, my best friend Blue, Cricket (my boss at Trade Aid), my caregiver.  I don’t think I would be where I am today without my Mum or my Dad.  My parents are wonderful and I don’t say that often to them.  Enjoy your holiday Mum because you truly deserve it.   

My life Story part 1

A lot of new friends (and some old friends too) with me on facebook don’t know my life story.

If you saw me walking down the street, you would notice that I walk with a slight limp because I have hip displacement and you would also notice that I have headphones on and singing along to my music on my iPod which keeps me mosaic.   You wouldn’t notice that I have an intellectual disability and a chromosomal one as well. You would see me texting my friends and family with my cellphone.  I have a rare syndrome called Cri Du Chat which means Cry of the Cat in French.  I am a mosaic which means some of my cells are affected by CDC but I can still enjoy life to the fullest.

I came into the world on December 12th 1984.  I was due on Christmas Day but my Mum decided that I should come early because she was very sick with me.  I was born by c-section at 11.32am.  The doctors didn’t pick up my cat cry at birth but someone else did, my Nana on my Mum’s side of the family.  When I was born she didn’t like babies but she knew that I was special.  She used to rub my back and that I was the only grandchild that she did that too.  I wasn’t a good baby and used to keep up my Mum and Dad all hours of the night. My Dad could hold me in one arm.

I have a younger brother and sister called David and Rebecca.  David is 18 months younger than me and Rebecca (Bex) is 5 years younger than me.  I have two stepsisters and two stepbrothers called Hannah and Abby and John and William.  One of my biggest passions in life is books, I love to read and to write as well.  I think I have read over 1500 books and I am getting a kindle for my birthday in December.  I love listening to music also and another biggest passion of mine is my CDC family because I haven’t met anyone in New Zealand with CDC yet and there is about 5 other families in New Zealand with it.  Currently I am making a collage of pictures people who have CDC and so far I have 28 pictures for it and I have 16 more families on my list that I have connected through facebook.

I volunteer three mornings a week, one morning a week working in a shop called Trade Aid.  Trade Aid helps third world countries by selling their products by using fair trade.  We help over 28 countries all around the world.  We are a non profit organisation and some of the countries that we help to sell their products are India, Kenya, Mexico, Nicaragua, Nepal just to name a few.  I can serve customers by operating the til, dusting the shelves and sometimes the products too, I can process new products coming in by putting the barcodes on the products.  I also do my bosses banking for her by going down to the bank and I am the only volunteer who is allowed to do this because I wanted more responsibly.  Last year in November I overcome by not looking customers in the eye and only saying good morning to them but one morning I asked three customers if they would like any help. So now when people walk into the store I say good morning and ask them if they would like any help. 

The other two mornings I work 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.

My hopes and dreams for the future are for to go get married one day to the man of my dreams and that I love.  Go to America and go to one of the CDC conferences and to make a difference to the people who are living with Cri Du Chat every single day.

For those people who are new and don’t know me know me I wrote this quote that I want to share with you.

I am a daughter, sister, person living with a disability, an aunt, a friend, a granddaughter, a niece, a girlfriend, an inspiration, a role model, an adult, I am a cook and a member of society, a cousin, and a light in this world, I am all of these things and so much more.  I have CRI DU CHAT SYNDROME!!!!!!!!!!!

My Nana and Pop

My Nana is turning the big 80 soon in about 3 weeks time.  All 5 granddaughters have been invited even my sister in law Toni and even my brother and a step cousin also out to dinner one Saturday night in August.
My Nana and I have a very special bond because she knew that there was something quite not right with me when I was born.  She was one of the first ones even before the doctors knew what was wrong.  I was the first baby on my Mum’s side of the family that Nana rubbed my back when I was crying.

When I grew older I must have been about nine I requested to my Mum can I go and stay with Nana and Pop in the school holidays for a week because I knew that I would get more attention and get spoiled heaps so Mum put me on a plane, bus or if someone that I knew was going down for the day I would get a ride with that person.

 I would love the week because Nana and Pop would do things with me like go to Nana’s craft group on a Wednesday morning I would bring down what I need and set myself up at one of the tables and colour in and or read.  One year I went to Nelson which is the top of the South Island to go and watch the wearable arts show with couple of their friends.

 From where I live to where they live it is about a two in a half drive by car, by airplane it is half an hour or by bus it is four hours I think.

 My Pop is an air force pilot who is now retired and he was in charge of the whole New Zealand air force at one stage.  My Pop is also a keen gardener, sailor, camper, a walker (I think I got his walking gene also his chocolate gene also.)  I remember walking with him up to Karori wildlife centre to find our wooden fence post that he donated to the Karori wildlife centre.

Earlier this year I went to Napier and I got to ride in a parade in his 1938 Morris Minor and I got overwhelmed by all the crowds and sensory overload.  My Pop has also a Jag too.  Both him and my Nana do classic car rallies all over the country.

Also when I was younger my Nana used to collect cats and every school holidays I would go round the house counting her cats and there were at least over 100 cats (statutes of cats) not the real things.

 When I come to stay Pop makes these wonderful puddings with ice cream and chocolate sauce and chopped banana.  Nana used to be a wonderful baker and I would help her to make sconces and other such wonderful goodies. 

 I haven’t been to stay with them for a while but hopefully these school holidays coming up for a few days.

My CDC family

Currently I have 786 friends on facebook which are a lot of friends.   Most of them I don’t hardly get to see  because they live on the other side of the world.  They are my CDC family and we support each other through the tough times and good times.  I love my CDC family and I wanted to show how much I love my CDC brothers and sisters I am making a collage of photos for my house and under each one of those phones I am going to write their names and what country they come from.  I wanted to make a collage because I know most of them won’t leave home and this is one way of them leaving home and this way every time a visitor walks into my living room and asks what are these photos are.  I can turn around and say these are my CDC brothers and sisters and they live all around the world and that way I can spread awareness through out the community.  I love my CDC family to pieces,  sometimes I wish there was an Island that all our families could live on and see each other every single day.  If anyone in the CDC community is reading this and would like to join that who hasn’t expressed an interest in this send me a message through facebook and I will include your child/adult and then send you my email address so you can send me your pictures.

Love

What love means to me is that you know that the person that you are meant to be spend the rest of your life with understands and knows me better than anyone.  The first time I saw him was a Friday morning I had just walked into his workplace and with a big smile on my face.  I can’t remember exactly what he was wearing but I know that it was something sexy.  He had this big grin on his face and I remember thinking to myself he is hot.  Little did I know that he thought about the same way about me.  I remembered him telling me later on that he asked his boss questions about me and his boss turned around to him one morning  “she is coming in on Friday morning you can ask her yourself.”  We flirted straight away and I looked forward to going to his work on Friday mornings to flirt with him.  Fast forward to several months later at his work Christmas party we flirted and then I gave him my cellphone number and we hugged for the first time and then he said “I know sweetie that you don’t want me to go but I have too.”  To this day he still calls me sweetie.  I still remember our first kiss he was over one lunchtime at Kayla’s trying to set up msn for me and we were in my bedroom and we leant in and kissed.  I know that I make a lot of mistakes but then I learn from them.  I think he has taught me so much and he has been my rock from since day one.  I quit his work about a month back because I knew that it couldn’t work out if I didn’t do anything about it so I thought about it and I finally did it and I am never going to look back because I want to be his wife one day.  It isn’t easy having a relationship with a disability I think it is ten times as hard as regular relationships, we have our ups and downs but when it comes down to it I love him to the moon and back.  We text, facebook, Skype sometimes and have KFC once a month, sometimes twice a month.  I am hoping our time will increases when I move down the street that he is living on at the moment.  We have four times broken up over the last four years but then we have gotten back together because we can’t live without each other.  This is the quote that sums up our relationship up until now “If you love someone, set them free. If they come back they're yours; if they don't they never were.”  He has come back to me after we break up that is what is true love is all about.   He found this poem for me about two years ago on Valtine’s Day and I read it every night before I go to sleep and read it every morning when I first wake.  I have had it laminated by my bed.

If I Forget

If I forget to tell you just how much you mean to me, I hope that you will remember while your not here with me.
If I forget to tell you that you are my world and more, I hope that you will remember what I am waiting for.
If I forget to tell you I want you in my life, I hope that you will remember that I am always by your side.
If I forget to tell you I love you more than words, I hope that you will remember regardless of the hurt.
If I forget to tell you I am sorry for my mistakes, I hope that you will remember with every one I make.
If I forget to tell you no other can compare, I hope that you will remember the love that we both share.
If I forget to tell you I miss you everyday, I hope that you will remember your absence causes pain.
If I forget to tell you that forever is what I want, I hope you will remember that forever is what we have got. Whether I say these words to you, or wait until you are here with me, I will show you this forever, and these words will have no need.

10 more things you don’t know about me

1.       I was born in Wellington New Zealand and I was meant to be born on Christmas Day but came 13 days earlier on the 12th of December.

2.       I lived in Edinburgh for a year with my family when I was 6/7.

3.       My favourite food is chocolate

4.       When I was little I coloured in my parents new white duvet with red lipstick

5.       I broke my arm when I was 8 I was skipping on my trampoline and tripped on the skipping rope and fell onto the concrete and my mum didn’t believe me until my dad came home and said it was broken.

6.       My parents divorced when I was 10.

7.       I have a sister called Rebecca and a brother called David and two stepsisters Abby and Hannah and two stepbrothers called John and William.

8.       I just know about all my CDC brothers and sisters names in USA, Australia and New Zealand.

9.       My CDC brothers and sisters are my heroes because they defy their doctors’ expectations every single day.  I am also one of their biggest supporters in whatever they achieve to the best of their abilities.

10.   I have two best friends called Kayla and Blue.

Houses

Houses mean a lot to different people, its somewhere dry, warm, a shelter from the rain.  It is also where families are raised.  I left home at the age of twenty four and ever looked back.  I moved out because my sister was leaving home and going to uni.  My brother left about five years earlier to study at the same uni as my sister.  I wasn’t ready to leave home when my brother did instead I ended up living with my Mum full time.  So when I moved out of home I moved in with my best friend from high school Kayla, (she needs full time care seven days a week.) another girl called Theresa and then Blue who lives out the back in her own flat.  Six months went by and Theresa moves out for all sorts of reasons.  So finally after nine months of Blue, Kayla and I, Kate moves in and things were going great until she broke my trust and our personalities clashed and still do.  So about a year of putting up with her rules and stuff, I wrote a letter to my parents explaining to them that I wasn’t happy living there.  He changed his mind in that weekend and he said that he would buy me a house so my stepmum, Dad and I began searching all over town and then we finally found a house for renting about three months later because Dad wanted to see if I could manage on my on my own for a trial period and I exceed that by six months and still going strong after being a year on my own.  About a month ago I saw on Trade Me (New Zealand’s website to sell things like eBay) a two bedroom, two bathroom and garage for sale so I emailed Bryan through facebook, sent him the link and he said go for it.  So I texted my Mum who liked it as well.  Then one Saturday evening Dad rang me on my cellphone because I was going to go and watch the rugby All Blacks vs Ireland.  I told Dad let’s go and drive past this house.  Dad really liked it and so on that Tuesday afternoon we went and had looked inside it.  The house and the location were just perfect and it was just what we were looking for.  So for almost a month I have known about the house and being keeping it secret because I wasn’t quite sure if we were going to get it because of the tender and it is not often I don’t share secrets.  Only a handful of people knew that I wanted to buy that house.  Thanks Dad for believing in me and I will enjoy my new home.  For me a house is a home where I can be independent as possible and have freedom away from my parents.  Who would have thought that one of my dreams has come true.  Now if I could the other dreams and goals in place then my life would be perfect.

Children

Most of my high school friends are starting to have families and on the odd occasion I get a little bit frustrated because I realise that I can’t have children because of CDC.  I got a little bit jealous a month or so back when one of my YMCA bosses took a home pregnancy test and I realised then I would never pee on a stick and watch it turned whatever colour it is meant to turn.  But then I realised today as I was watching Lucas play with his friends at his birthday party (he turned 6) and picking up two year old Noah and hearing Noah say mine to Lucas birthday cake that I can still have fun around children and I don’t need to be a Mum to do it. I think that is I love working at the YMCA because for two mornings a week I am a role model and young children don’t ask me questions like why are you different?  What is wrong with your hip? Or why do you talk so differently?  I couldn’t bring a child into this world knowing the full effects of the syndrome.   I think the parents who do are pretty awesome with their hard work, dedication and knowing that their children are going to take a little time to reach their goals and full potential including my Mum and Dad (Rob and Andrea also).  I don’t say this very often to them thank you for being there when I need you guys and thank you for helping me live independently and I love you!!!

10 Things that people don’t know about me

1.       I don’t like being touch by people that I don’t know.

2.       I know all the words to American Pie by Don McLean

3.       I know all the states of USA even though I don’t live in the USA.

4.       I am proud of my brother and sister in whatever they do in life and I love them to the moon and back!!!!

5.       I love anything to do with Vampires and the supernatural.  It all started with Charmed and then I read Harry Potter and then Vampire Academy, I am currently reading the True Blood series in books.  True Blood and the Vampire Diaries and Charmed are three of my favourite tv shows.

6.       A lot of people don’t realise that I am intelligent even though I have a slight intellectual disability.

7.       My favourite animal is the elephant.  I am starting to collect elephants. I have 9 elephants in my collection so far.

8.       I will beat my Dad at scrabble on Wednesday night (20th of June).  Scrabble is one of my favourite board games of all time.

9.       I reach out to new families who have CDC and I try to help them by telling my story and I met my first person with CDC when I was fifteen her name is Hanne and she lives in Australia

10.   I wrote this quote on my cellphone first of all when I was meant to be working the idea came into my head.  I am a daughter, sister, person living with a disability, an aunt, a friend, a granddaughter, a niece, an inspiration, a role model, an adult, I am a cook and a member of society, a cousin, and a light in this world, I am all of these things and so much more.  I have CRI DU CHAT SYNDROME!!!

Walking

I love to walk in the sun, rain, wind and in other weather.  So on Sunday night I download a pedometer onto my IPod to measure how many steps it takes me to walk around town and do what I needed to do.  Each Monday I go grocery shopping and so I thought I would test out my pedometer and I checked it several times throughout my walk and when I got home I had discovered that I had walked over 4737 steps.  I know wow that’s a lot of steps and the distance that I covered was 3.382 KMS.  I do a lot of walking during the day like for e.g. I walked up to my Mum’s to feed her cats because she was away and I get paid to do a five minute job.  It takes a lot longer than five minutes when you are walking everywhere.  On Saturday afternoon I went up to feed the cats Muffin and Beannie and didn’t actually get home for 2 hours and a half.  The only thing I don’t like about walking is, walking in the dark.  Every Friday night I go and get KFC and it is winter over here in New Zealand and I try to set off about 5pm before it really gets dark.  Sometimes I get a ride home if I am having dinner with someone that I know.  I know people are a little concerned about my walking with my IPod on and my hoodie up but I am very aware of my
surroundings and I don’t like uneven surfaces because it is the way that I walk,  I walk with a limp because of my displaced hips I even can’t run.  One year we went camping and one of my Mum’s friends said that was a short walk to a waterfall about half an hour walk up a little track.  It took like me two hours to walk up that track with one of my cousins, my Mum, my stepdad and my Pop while all of my cousins raced up and I got left behind because the track was uneven and I didn’t even complain once and when I got to the waterfall I sat down on a rock and read my book because it was slippery for me to get into the water. 
For all those who are concerned about me walking with my headphones and hoodie up and seeing cars.  I take down my hood and my headphones out to hear the traffic and see the traffic especially if it is a busy morning.  Walking gives me independence and freedom in a way that most people like to drive.

Sensory Overdrive

Imagine standing in a room full of people that you don’t know or you only know a handful of people and your senses working overtime to make it sense of it all or that you are afraid to talk to someone because you might say the wrong thing.  That is what it is like for me sometimes.  It depends on the situation but I don’t like social situations because I have to try and make sense of it all.  In those situations I take my game boy along and find a nice quiet spot once I have socialised for awhile.  I like to have someone that I know quite well like my family. I dislike crowds of people because my brain goes in overdrive and it gets overwhelming to try to keep up what is happening if that happens I get tried so fast because my brain can’t keep up on what’s happening.  I don’t go out and socialise that often and when I do its hard for me to follow what’s happening even though I am intelligent for my syndrome but I get some symptoms of CDC like a short attention span or my lack of concentration after a certain number of hours and then I need a break.  I work in the mornings because I can concentrate a lot more.  I walk everywhere around town and if I don’t take my iPod into town with me I can’t focus because there is a lot going on like the cars going past and stuff like that but if I take my iPod I can shut out most of the noise and help me concentrate better and I wear hoodies most of the time so I can also put my hood up and block out most of the background sound.   Last year at my younger sister’s 21st I brought along my game boy and didn’t actually know any of her friends but my family was there but all evening I sat on the couch and played on my game boy because I am not very good at socialising with strangers that I don’t know and my Mum came up too me at the end of the evening as my brother and I were leaving and said that she was very proud of me that I lasted long that I did.  

Words

I love to read and write.  These two things I have grown up with.  After I was diagnosed with CDC.  I began speech therapy but it was mainly that I first started school that I began to read and it helped my speech as well.  I remember reading shop signs at the age of five.  When my family moved to our current town Wanganui when I was 7 and grew up here.  The town library has played a major role in my childhood.  I remember getting all excited when Mum or Dad took us to the library.  I was only allowed to get out 7 books that was my limit.  I started reading the babysitter club books when I was 8/9 and that continued over the next few years.  Then from there it was Nancy Drew, The Hobbit, The Lord of the Rings books, Tomorrow when the war began books, Harry Potter, Cross Stitch books, James Patterson books, Vampire Academy series and Fifty shades of Grey series and so many other books.  Most of my lunchtimes at school would be spent at the school library I became a school librarian in Form 1 at the age of twelve until I left high school.  Even for two years at school did work experience working at the town public library.  My favourite shops are bookshops and we have two main ones.  Whitcoulls it’s a bookshop their staff know me quite well in there and say hi and know me by name.  I love to express myself through my writing when I was growing up I used to write novels and poetry.   I still occasionally write but I have had writer’s block over the last little while but I think my writing has improved over the years.  It takes me ages to write because it is all about the concentration and what I am trying to say.  At school when my exams came along I used to have a writer because I am slow at writing and all the other students would be a lot faster than I would be.  I type a lot of the time because it is easier for me and it is a lot quicker but I still practice writing during the day or whenever I have something to say.  I always carry around with me a notebook and a pen.  Sometimes on a Wednesday night at Dad’s, Dad and I play scrabble because it builds a lot on my vocab and it gives me a chance to do something with my Dad.  He gives me a handicap system, he gives me a hundred points head start because my spelling sucks and I have CDC but every time I win a game it goes down by ten points and every time I lose it goes up 10 points.  In conculsion this blog is for anyone who wants to know a little bit about my world.https://www.facebook.com/?ref=tn_tnmn#!/