Guitly

I feel guilty sometimes for having a boyfriend, having two wonderful jobs and all the things that I am great at doing.  I know that it is not my fault for having mosaicm but I do still feel guilty. Couple of weeks ago I went to Bryan’s for dinner he lives up the road from me. (Yes we do live on the same street.)  We had pizza for dinner and I had fun that evening but when I was walking back to my house I felt guilty because my CDC brothers and sisters won’t get to ever experience eating pizza with their boyfriend/girlfriend and I try not to feel guilty but sometimes it doesn’t work.  I love my CDC brothers and sisters and sometimes I compare my life to theirs because I get to experience so many wonderful things like going to work at Trade Aid and being set out little challenge by my boss because I am goal oriented and we have changed my challenge to cash transactions because we don’t get many percentages on the till. I still struggle with cash transactions I know how to do eftops even though we changed the process of eftops transactions and I need 10 cash transactions to get my elephant teatowels and that is my reward for doing ten cash transactions all by myself without any help from Cricket or the other volunteer who works with me on a Tuesday morning.  Sometimes I get sad about what I can do while others with my syndrome can’t do what I can I do like read a new book in one whole day but then I think of all the joy that they are bringing to their families lives.

Fanta

I am 29 in a month and I have a new kitten called Fanta she is mainly ginger with white paws.  I don’t think i would get another kitten again after Crede died but in the three days that I have known Fanta she has started to help me heal and Crede will always be my little man.  Those who don’t know or haven’t been reading my blog for very long Crede was my first kitten,  I got him as a surprise on my birthday last year because I have always wanted a kitten/cat and in May he got ran over outside my house and I have his ashes in a box sundered by my elephants for protection and his box is up on a shelve up above my heater.  It feels weird having a kitten around again but heaps of fun.

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.