Tuesday, 10 September 2013

To Anonymous

It isn’t my fault about how I am a mosaic sometimes I wish I had the full syndrome so I could see what it was like for a day.  When I was growing up I got bullied, teased, pick up on and was called the “R” word and so many other nasty words that little children were saying.  I didn’t fit in at all at school I was the child in the library at most lunchtimes because I love reading and wanted to increase my knowledge.  I was a school librarian from the age 11-18.  I struggle every single day with sensory and wanting me to touch everything in sight and run my fingertips over walls, shop windows and things like that.  It was my best friend’s birthday the other weekend and I wanted to go out and celebrate with her because it was her birthday but she was going to a pub where it would be noisy and overcrowded with heaps of people and I didn’t go because I would have gotten there and wanted to come back home within half an hour.  Maybe you were having a bad day reading my blog and needed to vent towards me, we have all done that vented at someone to let it all out of our system.  When I was reading your comments the first time I wanted to cry because your comments were nasty and mean and I didn’t want to write anymore because of what you said.  But then the CDC community on facebook were like please don’t stop writing we like reading what you write.  I am an adult and there are favourite toys that I like to play with even if they are different from everyone else’s we can’t always be the same.   I struggled to fit in all of my life and about four years ago I was on Facebook one day and I typed in Cri Du Chat and a group came up so I joined it and I told the group that I was a mosaic and that I lived in New Zealand.  That group changed my life forever because I was accepted for being me and no one judged me for being me.  I am respected by a lot of CDC families because I can help them understand CDC better and answer any questions that they might have in my own way.  I don’t have all the answers to all of the questions but I certainly try to answer them.  I don’t think less of my CDC brothers and sisters because they have the full syndrome or can’t do certain things  I love them all equally and I am one of the only ones out there can explain what it is like living with CDC.  I want you to be your friend if you will allow me too I know that you might not be ready too but I am here and so is the CDC community to help you whenever you need it.


  1. Well said Rachel. I am PROUD to be your friend.
    Louise Gallinetti

  2. Thank you for sharing Rachel, I have always appreciated reading your comments because you help me learn about CDC. I would love to invite you to come to Canada one day and speak to a gathering and educate people about CDC. As you already know my Grandson Boston has CDC.

  3. Rachel, you are simply awesome!!! My son is alot like you. He has a video on youtubevpromoting the 2012 CDC confrence on Denver. He made the video all by himself. He was 13 at the time, please take a minute to watch it. It is called " Cri du chat honesty and humor". He is now 15 in 9th grade and he is working hard. We go to his genetic doctor tomorrow. We want to know his deletion. I think he may be mosaic too. Thanks for sharing you life with us. Hope to see you at the conference next year in Texas.