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.