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.

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.

My Week

I celebrate my life every single day because I know that my life would turn out very differently if I had the full syndrome.  This week I have been on my own because my parents are off in two different countries my Mum is in America doing route 66 with couple of their friends and their new car that they have just brought and being posting photos every single day on facebook and they are in Texas at the moment but tomorrow they will be in Santa Fe staying with my brother and sister in law for couple of days and we are going to try and skype each other while they are there.  My Dad is in Europe in Rome currently enjoying celebrating my younger sister’s birthday today and later they are going to board a yacht in Croatia for a week and we tried to skype on Sunday for Father’s Day but it kept on freezing but I did get to see my sister and my Dad twice for 5 seconds.  I have being going up every single day to feed Beanie and my YMCA boss that I work with that I have being working with for almost four years it was her last day today because she is moving to Australia to live and I am going to miss her because when I started working I would only stay with her down the stairs and do activities downstairs with her and the children but when we moved to my old primany school (long story) I had to step up and have more responsailty where we have the cirect set up and I now can say that I confidently I can show the cirect to the children without any help and supervise the children in the room.  I have come a long way since I first started working at the YMCA.  Also this week I found couple of families on one of the pages called Stop discrimination against special needs whose children have CDC and didn’t know anything about Cri Du Chat / 5p- Society on facebook so I told each of the Mums if they wanted to join let me know so I could introduce them to each of you.  Also this week on facebook I updated my Status to this For those who don't know I am going to the Cri Du Chat conference next year in America it is going to be held in San Antonio and I can't wait because I reach out to so many families and I love what I do because I give hope to so many families.