Love Part 3

Everyone knows the story how Bryan and I met.  One night in December almost six years ago we hugged at a Christmas party and it felt so right to us and then I gave him my cellphone number and as they say the rest is history.  I remember the first time that he got sick I was at grans for New Years and he ended up in hospital.  Bryan gets sick a lot because he has a low immune system and he has a rare disease called Behcets which means instead of his body fighting off infection or bug he has, his body attacks itself in the process.  He may look perfectly healthy some days but on other days he could be really sick so we can’t plan anything together and when we get time together it is rather the quality time that we have together instead of the quantity amount of time.  The last time I saw him was the 11th of September for about half an hour, he came over after work and it was fun.  I don’t see him every single day but we talk on facebook, Skype and text each other.  If I don’t see him for a long time then I get frustrated but then I draw on the strength of the love that we both have for each other.  

My Speech that I did in Australia

A show of hands how many people in this room have I reached out to on Facebook? Private

messaged you an introduction about myself because I didn’t want anyone else to be alone. I

have reached out to more than 800 people on Facebook alone and I have made some

amazing lifelong friends. You are never alone. This is my story

There is something extremely special about me. I have Cri Du Chat but I am a mosaic.

What is a mosaic you ask? A mosaic only has some of their cells affected. I have about

30% affected.

The ways in which my Cri Du Chat makes me different are if you saw me walking down the

street, you would notice that I walk with a slight limp because I have hip dysplasia which

means my hips turn inwards when I walk. You would also notice that I have headphones on.

Sometimes I run my fingertips against walls, fences, shop windows because I like to feel the

different textures as I walk along.

I was born by c –section on 12 December 1984. I was 2 weeks early; I had jet black hair and

a cry that sounded like a cat. My nana was the only one who noticed I was different. My

Mum says that I was a shocker as a baby. I got banned from the hospital nursery because

of my crying. I kept my Mum up at night waking every two hours. I think I improved with

age.

By the age of one and a half I had a little brother called David. By two and a half I wasn’t

starting to talk and the plunket nurse noticed that I had a smaller head than most children my

age. Tests showed that I had 5P- or Cry of the Cat syndrome but I was a mosaic. My

deletion is large. I can do most things that I set my mind too and achieve them to the ability

that I am able to do. I started speech therapy but only learned to talk properly when I learnt

how to read.

When I was four I stayed in an assessment unit out of the hospital for a few weeks. When I

turned five I began school I was in a special class but it was part of a mainstream school.

Also when I was five my little sister Rebecca was born and then when I was six I moved to

Edinburgh for a year because my Dad was training to be an orthopaedic surgeon. All that I

can remember about Edinburgh is the castles that we visited and coming back to New

Zealand, missing Christmas Day because we crossed over the international dateline and

eating my Nana’s big chocolate buttons off her birthday cake.

When we came back to New Zealand, my Dad got offered a job in Wanganui and so we

moved to Wanganui which is in the North Island on the West Coast. We moved into a

hospital house and Mum enrolled both David and I at one of the local primary schools but I

only lasted a term because the classes were big and I couldn’t concentrate so eventually I

moved to St Georges which is a private school. During my first year at St Georges I got held

back because I could learn at my own level with my schooling. During that time at St

Georges my parents split up when I was ten and both of them met new partners Dad met

Andrea who eventually moved in with us and Mum met Rob.

When I got to the end of my primary school years my parents had to choose a high school

suited to my needs while my brother got sent off to the biggest high school in town. Mum

and Dad choose the local catholic girl’s school which was around the block from my Dad’s

house so I could either chose to ride my bike or walk for the first couple of years I choose to

ride my bike and in fifth form I decided to walk because biking wasn’t cool anymore.

When I was fifteen I met my first ever Cri Du Chat person her name was Hanne. Hanne has

been in my life for almost thirteen years. Hanne and I have had adventures over the years

like trying to walk home after the zoo and getting lost in downtown Sydney or getting soaked

on a jet boat in the Sydney Harbour the last time I was there for Hanne’s 21st and that was

two years ago. The first time I met Hanne and her Mum was at planet Hollywood for dinner.

Hanne and I shared a cheese pizza because that was the only thing that we could agree on

that we could eat off the menu.

When I left school I went and did a teacher aide’s course. It usually takes 1 year but I took

two years because when I learn something new I like to repeat things over and over again

until it gets stuck in my head and then I got a part time job for two years at my old high

school in the learning centre through mainstream funding employment scheme which means

that the government pays 100% of your wages for the first year while in the second year the

government pays 80% and your employer pays 20% of your wages and at the end of the

two years you are meant to come out with a job but I didn’t because my funding ran out so I

lost my job at Cullinane College.

In September of that year, love came looking for me. In the form of a wonderful man called

Bryan. We met at his work on the first Friday morning that I started going there. I walked in

and noticed a man standing looking at me and I thought to myself he is quite hot. Over the

next several months we flirted until the Christmas party when I gave him my cellphone

number. We have broken up four times in the last five years because we weren’t allowed to

date because he was a staff member and I was a client. I quit his work last year because an

opportunity came up to volunteer at the YMCA for two mornings a week.

I left home when I was 23/24 and lived in a transition house. Kayla has been one of my best

friends since high school and my other best friend Blue lives out the back of Kayla’s in a self

contained unit where she does her own cooking and cleaning. Kayla has cerebral palsy and

so there were plenty of adults around to help and guide us. I left after two in a half years in

the transition house because there were personality clashes and I had out grown the house.

In the time of the transition house I went and did work experience at the local Trade Aid shop

which sells products from third world countries like India, Kenya, South Africa and Peru and

many more countries. Over the last almost three years that I have been working at Trade

Aid my confidence has improved in myself and the work that I do. I am proud to say now I

can confidently can say how can I help you to the customer? And December of last year I

did my ever first sale by myself without any help from my boss or the other volunteer that

works with me. As well as doing that I dust, and do my bosses banking, I take her banking

down to the bank and I am the only volunteer who is allowed to do this because I wanted

more responsibility.

Also at this time I began volunteering at the YMCA helping run a programme called Boogie

Buddies for two to five year olds. I help set up the gym equipment to make an exercise

circuit and if it is a really fine day we take them outside. I mainly supervise them exercise.

We put on some quiet music to help them cool down and then the bus driver takes them

back to their kindy.

In July of last year Dad brought me a house. I love my house because it is close to town and

close to Bryan’s house which is only down the road from me and Mum’s work is about a five

minute walk away as well.

In the future I want to get married, to be happy and knowing that I am helping the Cri Du

Chat community.

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, a fur mama to Crede and a light in this

world, I am all of these things and so much more. I have CRI DU CHAT

SYNDROME!!!

Walking 2

All I want to do is walk normally without getting stared at or teased about the way that I am walking.  I know that I can’t walk that fast while walking up hills or going down hills because it takes all of my concentration not to fall down onto the concrete and hurt myself.  On the flat I can go fast because the ground isn’t uneven and it is flat.  I find it really hard to sit down or stand up really quickly because I might lose my balance and fall over.   On Tuesday morning I was sitting down and dusting like I do every Tuesday morning and one of the volunteers hissed at me to move because I was in the way of a customer.  I can’t help it if I can’t move quickly,  when I mentioned it to my boss how to get me out of the way quickly she suggested a skateboard that I could sit on and dust until a customer wants to get past all I would have to do is get Cricket to push me out of the way.   School holidays are coming up for those people who have no idea about school holidays.  Our school year is divided up into four terms which is made up of ten weeks and then we get a two week break for each term apart from the last and first terms of the school year which we get a six week break in between the new school year and the last school year.  I really don’t like school holidays because there are teenagers in town and I will quite often get laughed at about the way that I walk so I try and avoid going into town, I only go in if I need something from the supermarket or need to go for a walk.  Last school holidays I was walking from town up the library steps and I got laughed at by some teenage girls because I have to twist my right leg to go up the steps and it isn’t fun at all because to me it is work getting myself up the library steps so I can go home.   

Pay it forward

I struggle every day to do things it is different to my CDC brothers and sisters. I don’t give false hopes to anyone because every CDC child/adult is different in their own way.  I am not a normal 28 year old because it takes me longer to learn things but I try my every best and if I can’t do it the normal way I do it my way.  I struggle every  day with my concentration, sensory issues and my hip dysplasia, everyone who knows me, knows that I love to walk but it takes a lot out of me especially at the moment walking to my Mum’s every single day to feed Beanie (Mum’s cat).  I don’t have a full time job because if I did I would become very sick and stressed out but I volunteer, what I love about volunteering is I am giving back to the community through commitment whether it be working at Trade Aid or the YMCA I have learnt new skills or found the confidence in myself to better myself at something to make a difference in someone else’s life.  Then there is the work that I do for CDC and I love  each new family that comes into the group and tells their story whether there are starting out on their journey with a recently disgonsed baby or joined later a few years later after their child was disgonsed.  At the conference in Texas I want to learn as much information as possible so I can better myself in helping the new members of the CDC community and network with people that I have meet on facebook but not in real life.  I know what it is like to be alone and I know that I am scross the other side of the world a kiwi girl with a big heart and I want to let the new families that you are not alone anymore. 

My gameboy and games

I am 28 and I have a gameboy.  I admit it I have a gameboy or a Nintendo DS3 and it is light blue and I have a case for it somewhere and it is blue also.  My Nintendo DS3 goes everywhere with me because if I am somewhere crowded I will pull it out and play on it because it helps me focus and if I am somewhere crowded I can concentrate on playing on my games.  Currently I have 73 games and in about a month’s time I will have 74 because the new pokemon game Pokemon Y will be out and I preordered it from one of the shops in town.  I really love the pokemon games and any puzzle games that I can solve on my own without any help from my parents or anyone like that.  Couple of years ago Mum couldn’t decide what to get me for a Christmas present so I suggested to her a new gameboy to replace my old one which was getting broken and couple of games to go with my gameboy and so I decided to help Mum with the cost getting down my new gameboy so I traded over I don’t how many games but I brought down the cost so much that I actually got another game that Mum wasn’t going to pay for.  When I was about 14 I discovered pokemon and so I started printing them off the computer and started colouring them in their right colours because it was and is still good therpy for me because I have to stay in the lines and colour them in.  One day I was in a store looking at games for my gameboy when a shop assistant came up to me and said you are too old to be looking at gameboy games and I boycotted the store for at least couple of years because you are never too old to enjoy something that you love doing.  There is a store in town called EB games and I go in there about three times a week to just to have a look at the games that they have in there and they sell preowned games as well as new games too.  All the staff know me in there and they don’t mind me having a look.