I wish

Sometimes I wish there was another New Zealand CDC family living closer to me.  I know that I help a lot of overseas families but I don’t think there has been any official conference in New Zealand before because there is such a small group of us but one day I would like to meet some more New Zealand families and to meet one another like how I meet Portia and her Mum Karina at the conference earlier this year.  I can’t wait for the USA conference next year because I will get to hug some very special people that I have helped over the years and I get to meet and hug three of my best friends that I have an amazing connection with.  I think I will be one of the only few who will most people there because I was only the few who knew everyone at the Australian conference and Mum was impressed that I knew so many wonderful people.

13.1

13.1 is just a number to anyone who looks at it but for me it just more than a number.  13.1 is the size of my deletion.  I only found about the size of my deletion this year in March.  That is 80% of chromosome missing but being a mosaic only 30% of my blood are affected, I have no idea about the rest of my body cells and which is fine with me.  I have always wanted to know about the size of my deletion.  Even though I am mild CDC still does affect me like my speech, the way that I walk and sensory overload (for those people who are going to the conference next year please be aware at the banquet on the Saturday night I might be playing on my gameboy or my ipod because I need some time out because my sensory overdrive will be working overtime.)  I still need help in doing certain areas in my life and I celebrate every mildstone that I achieve it maybe different from my CDC brothers and sisters but it is still a mildstone to me in my life.  I want to change people’s minds about what CDC children/teens/adults can do and what they CAN’T do.  Even though I have a large deletion but only 30% of my blood cells have the wonky choromsome.  13.1 is just a number to me it doesn’t change anything about me.

To all the new CDC parents

Hi to all the new parents who were given the diagnose of Cri Du Chat or Cry of the Cat or 5P- or CDC for short.  Welcome to this wonderful journey of self discovery through your child’s eyes.  Your child will amaze you with what they can achieve within their own limits.  They will prove the doctors wrong with what they know.  Sure having a CDC child can be very rewarding and also a lot of hard work.   You will get to meet other parents all around the world because we are one big happy family and form lifelong friendships that will last forever.  I know our syndrome means failure to thrive but we set out to prove everyone wrong in the things that we can do and achieve to the best of our abilities.  You can’t compare one CDC child to another because it isn’t fair on the children and just like regular children we grow at our own different rates and our own pace.  We are individuals no matter what our deletion size maybe.  And then there is me, I will be your friend for life because I am here for you and your child and I am one of the voices for children who can’t speak for themselves.  I wish them a happy birthday on their birthday because I believe every one of my CDC brothers and sisters are special no matter their skin colour, their deletion size or their age.  I will be there for you as a friend, someone who can give advice, not judge you and be empathic because I know what it is like to be alone where the world doesn’t know who you are.  I am here for you and I want to help as many families that I can because I want to help you understand what CDC is all about and how it can affect your life in so many ways.  Welcome to our ever growing family.  My heart to your heart.

Magic

Not a lot of people know that I love the supernatural like vampires, witches, wizards, Harry Potter and Charmed or Sabrina the teenage witch, just to name a few.  I think it all started when I was in my first year of high school when Charmed came out and I loved it.  I would watch it every Tuesday night at 7.30pm until 8.30pm and it was awesome because it was my first real taste of television magic because I can’t remember watching Sabrina the teenage witch until later when I was about 16 and then my interest in the supernatural began to grow with Harry Potter (which is still one of my favourite series to read and watch the movies.)  I don’t ever remember watching Buffy or Angel when I was growing up but I now have the DVDS of all the seasons of Buffy and Angel.   I also have the seasons from Charmed.  Then in 2008 I picked up a book called Vampire Academy by Richelle Mead which I loved straight away and I couldn’t put it down and Vampire Academy is the first book in her series of 6 books and then she followed on from there with another series called Bloodlines and her fourth book in that series comes out in a month’s time and I have written down on my whiteboard the name of the book and the date that it comes out.  I also discovered the Vampire Dairies on television as well as True Blood.  I have also started watching the Originals and I love the first two episodes because I haven’t watched the third episode yet but I am planning on watching it.  I also found on you tube Wizards of Waverly Place which is awesome to watch because Selena Gomez is really cool and really funny.  I am not a witch or anything I just watching shows or movies or reading books about supernatural things and not really scary because I don’t like scary movies. 

Superhero

I am a superhero, I don’t wear a cape or fly or fight crime or drive a bat mobile like all of the superheroes that you read in comic books or watch in movies or watch on tv.  But in real life I am a superhero to a lot of CDC families that I reach out to on facebook.  A lot of these families need some guidance about where to go because the info they get is out of date and a lot of doctors don’t know a whole lot about CDC.  I put on superhero cape which is full of love and understanding and a lot of empathy to their situation and to let them know that I am here for them, to help them understand CDC a lot better and guide them to the answers that they have been searching for so they don’t feel so alone.  I am only one of the very few who know what it is like living with CDC every single day.  Over the last few years that I have been reaching out to families through facebook I felt like I am doing something worthwhile to my life and it has been an amazing journey to find families that believe in me and I have made so many lifelong friends and three amazing best friends because they believed in me and I can’t wait for next year to meet you all in person and so I can give you all a big hug and say thank you.  By the way Batman is my favourite superhero because he drives the bat mobile.

Curbs vs Me

I tripped and fell over on Saturday morning grazing my knee and both of my hands.  I wasn’t texting at the time and I was paying attention to what I was doing.  One minute I was walking along and the next minute I knew that I was on the ground.  I got up every shakily off the ground and regrouped myself before painfully limping down to the town square because I knew that my boss and friend Cricket would be there for our town’s Festival of Cultures and she was running the Trade Aid Stall.  When I got to her stall I almost burst into tears and she took a look at my hands and told me to come with her and so I did.  She hunted for a first aid kit at the Festival but couldn’t find one and the shop was about 300 metres down the road so we went back and Cricket fixed me up the best that she could.  I texted Bryan first to let him know what happened and then I texted my Dad to come and pick me up.  He did and took me back up to his house so he could patch up my knee and I rested at his house for awhile and then he took me to feed Beanie.  Since this is the last week of feeding Beanie and I am hurt.  One of my Mum’s best friend’s Mum’s is going to do it for me since I can’t walk fast.  Eighteen months ago I was walking to KFC one Friday night and I tripped and fell on a curb that time I badly hurt my arm.   I know that I am unstable on my feet sometimes.