Friends

Having friends what make the world go round.  From the early age my brother has being one of my best friends because I think I learnt a lot from him like when climbing up on the bathroom sink and into the bathroom cupboard you need a look out person for any parent around to see if you would get caught sneaking the fluoride tablets down because I wanted the container that they came in and I thought my younger brother should be the lookout person.  As we grew older we each had our own circle of friends, he would have his friends over to play on the xbox, play station and I would sit there and watch them play hoping that it would be my turn next.  Throughout my childhood I would have one best friend called Elizabeth and we would go and over each other’s houses to play and create craft things her mum was really into craft stuff.  In form two I had a best friend called Angelina and we would always end up at my dad’s house and walking around the lake singing songs. I had another best friend called Harriet, Harriet and her sisters were my parents best friends and about once a month we would go across to their house or they would come across to ours. During high school I had four best friends Gabby, Lea and Jess and Kayla.  Gabby and I used to write letters when she went to university and that was really neat and we both loved Roswell and the pretender even she helped me write backwards “There are pretenders among us.  Geniuses with the ability to be become anyone they want to be.  In 1963 a corporation known as the Centre isolated a young pretender named Jarod and exploited his genius for their research.  Then one day their pretender ran away.... “across the blackboard in the learning centre at lunchtimes.  Jess was the funniest best friend that you could ever have and the kindest, loving person.  She was born one year and one month before me.  Jess was really sick she would have to go to the hospital every third Friday and get needles in her arms to make her stay alive, she had Common Variable Immunodeficiency (CVID).   She was one of the first people that I told about Bryan and we would have a nickname for him Jamie out of one of Diana Gabaldon’s books one of the main characters.  When we first started going out because we weren't allowed to date because of the staff member and client dating rule. Jess taught me a lot of things like how to be a good friend.  Jess and I had a falling out about a year before her death over something small.  She died two years ago in April she was really sick when she died.  I met Lea at the end of fourth form she came from Switzerland with her family and I remember at her seventeenth birthday party she had a sleepover with both girls and boys she lived on a farm out in the country, we got up to mischief that night without her parents realising our antics.  The first time I met Kayla when I was sixth form and she was in third form, Kayla is in a wheelchair and has epilepsy and cerebral palsy and brain damage from when she was shaken as a baby but I would still hang out with her at lunchtimes and we would go to helberg sports days together which was a lot of fun.  I moved in with her for two in a half years and we still hang out together every month for afternoon tea with my other best friend Blue.  My other best friend is Bryan even though he is my boyfriend I still count him as one of my best friends I can tell him something and he won’t get mad and if I am upset about something he will cheer me up.  I have made some awesome friends through facebook who like me for me and not what I have.  Friends don’t count missing chromosomes.

Facebook

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

CDC week

I give CDC a voice every single day of the year.  I reach out to a lot of families through facebook and tonight I reached over 1000 friends which is a lot of friends to keep track of but I love what I do because I am helping so many wonderful families to educate them about CDC and what it means living with CDC.  A lot of people with my syndrome can’t tell their parents what it is like having CDC but they are still smart like in their own way.  It is international Cri Du Chat week this week and it is amazing that the video has gotten so many views all ready in you tube.  I love awareness week because it brings people together and makes them aware of CDC.  It has being 50 years since it was discovered by Dr. Jerome Lejeune and we should celebrate the theme for this week is I CAN.  On Tuesday morning I went to Trade Aid and almost served my fifth customer all by myself (my goal is to reach ten.)  Then build on that by increasing it to twenty and so forth.  I was reading brown paper bags as I putting a bookmark in each of the bags and the bags read I made a difference and I was telling my boss on Tuesday morning that I make a difference every single day because I reach out and help people to understand CDC and I am so grateful for giving a voice to my CDC brothers and sisters and for those families who let me be me and accepted me for me.  I do some amazing hard work on facebook because I don’t want families to be alone. I love my CDC family!!!!!

CDC conference

I have reached out to more than 800 families on Facebook through my introduction about myself and I love what I do because I bring hope and faith to those families who are struggling to come to terms with CDC and what it means to them as a family.  I love it because I get to tell people who I am and I what I have achieved over the years.  About a month ago I went to a CDC conference in Australia and I loved it because I just could be myself and no one else even though it rained for the four days that we were there I loved it and I enjoyed it to be apart of something great.  Next time I want to take my boyfriend across so he can for himself how lucky he is to have a girlfriend like me.  I know that I haven’t written on my blog for such a long time, I think it is because I haven’t said anything to say until now. 

Most of the CDC community knows that I went to the conference and spoke in front of 150-200 people which is just scary in itself standing up there and reading my speech with a lot of distractions going on around me but I did it and I am so proud of myself and I know that I made a couple of people cry and a lot of them had tears in their eyes but I have worked out what I want to do with my life and that is to help families who have babies/children/teens/adults living with CDC as well as working at Trade Aid and the YMCA. 

If those people haven’t yet checked out my video yet it is on facebook in the CDC groups and couple of the other groups that I belong to.  I also wrote a poem for international Cri Du Chat week I know which is only about a month away but I am going to share it anyway and then going to reshape it again once it is international CDC week.

I have a rare syndrome called 5P- and here is a fact
Was discovered by a French man called Jerome Lejeune
Fifty years ago in 1963
I can do many things like a normal twenty eight year old

 I can live on my own and have a boyfriend

I can cook and try and keep my house clean
I can walk afar because I don’t own a car
I can have fun with my friends

Two mornings I work at the YMCA from 9 until 10.30am

Helping children have fun while being fit
There is a circuit with a lot of different actives like  
Climbing, sliding and balancing

 The other morning I work in a shop called Trade Aid

Where I try and help my boss all day
By doing her dusting and banking every week
I keep on her toes by being me

 I love to read and write

I could do it all night
I have a kindle which makes reading a whole lot fun
I can read a book in a day and a half

I reach out to other families through facebook

To show them what I can achieve and give them hope
In their darkest hour for someone to listen to them
Because they are not alone

Now it is time to celebrate
International Cri Du Chat week
So put on your t shirts and spread the word
That kids with Cri Du Chat simply amazing

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.