13.1 part 2

I am missing 13.1 of my 5P arm.  To most people the number 13 is unluckily but to me it is luckily because I don’t have my cells all affected with 13.1 deletion.  Even though some of my cells have the wonky chromosome I still have Cri Du Chat and that is never going to change even though some of my good cells will eventually replace some of my bad cells throughout my body.  I have my interests like collecting elephants and collecting Pokemon on my gameboy (I have several Pokemon games) and I also read a lot.  The reason why I love collecting elephants is because they are luckily in some cultures and elephants are my favourite animals and because they represent wisdom, courage and strength which I show in my everyday life.  I may not be intelligent to go to university but I show intelligence in other ways and sometimes I think I am wise beyond my years when I come up with my quotes and sometimes I don’t know how I come up with my quotes.  I show courage in everyday life by getting up each morning and facing the day not knowing what the outcome of the day might bring.  I show strength by helping other families who children have Cri Du Chat and for people to believe in me in what I am doing.   I know that 13.1 is just a number and it isn’t going to stop me from living my life and marrying the man of my dreams.

How I explain CDC to someone

I am me and I can’t change the fact that I have CDC or that I am a mosaic but I help a lot of people to understand yes that I do have CDC but I am trying to make a difference and try and get the word out.  So how do I explain to someone that I have CDC and it depends on who is asking and I what I tell them.

I start with my name because I am a human first before I tell them that I have a rare genetic syndrome.  Next I tell them that I have Cri Du Chat or Cry of the Cat or 5P- or CDC for short.  I was brought up using Cri Du Chat not 5P-.  I know in America that some parents use 5P- to explain my syndrome and that is fine by me because it is called by either name.

Next I tell them that Cri Du Chat affects my 5th chromosome and that I am missing quite a large chunk of my 5P arm and that my deletion is 13.1 and then I tell them that is where the 5P- comes from explaining the deletion and what chromosome it is located on.

Next I tell them that I am a mosaic and then I explain what a mosaic is and what percent of my blood cells are affected and then I tell them I don’t know the rest of my percentages throughout my body. 

Next I tell them how CDC affects me I explain to them that I have a slight intellectual disability, my concentration isn’t that great and I can only concentrate for certain amount of time but I need a break and do something else.  I explain about my hip how I walk with a limp and how CDC affects my speech also.  I also tell them that I get sensory overdrive if I am in a crowd of lots of people and then explain what sensory overdrive is to them also. 

I ask them if they have any questions that they may have and if they don’t we end the conversion there.  If they do I answer their questions and tell them that Google is out to date with the old information and that they need to go and look at the correct information like the support groups around the world. 

In conclusion my conversions that I have with people last for about five minutes because I have given them my story in a short amount of time and I know what information that people are looking for because I have explained it to so many people and I will always put it in my own words.

The "R" word

The “R” word is hurtful and we don’t need to use it in modern society.  Some people think they can use it without thinking about the consequences what they are saying.  When people use that word it hurts more people than they realise.  The “R” word is an old fashioned word meaning slow, dumb and some other nasty horrible words that we don’t need in society today and there are better words than the “R” word like another “R” word called respect.  I respect my CDC brothers and sisters because they struggle in everyday life but they never give up even through the tough times like that they can’t do something and then with heaps of practice they finally achieve their goals in their own time.  Another acceptable term when describing someone with a disability is intellectual disability it is more accepted than the “R” word.  I have been called the “R” word when I was little by other children and it felt wrong and made me feel sad that I was different from everyone else but now I can see why I am different and I am trying to change the world and make it better for my CDC brothers and sisters so that they can follow in my footsteps and leave an imprint on the world forever.  In conclusion the “R” word isn’t accepted in society anymore so why use the “R” word when they are plenty of other good words out there to describe someone who has a disability and maybe who is a little different from you.

My routine

Everyone has a routine of some sort through out their day or week.  My routine is important to me because I like to know what is happening during the day.  I don’t like it when unexpected events come up during my day because that means I have to adjust what I am doing for the day.  On Monday mornings I sleep in because I don’t have to get up for work or anything else apart from Fanta who meows about 7 to be let out of the garage so I let her out and then I go back to bed and she follows me and we snuggle in bed while I am asleep, I sleep in until about 9-930am and then I get up and get ready for the day, during breakfast I make my shopping list so I know what I need during the week and then I watch tv and play on facebook for the morning until about 1 when usually my caregiver shows up and then we walk to the supermarket (yes even when it is raining too) because I don’t have a car and I usually walk everywhere that I go.  If my caregiver doesn’t turn up I wait until 1.30pm and then I usually give up waiting and I still go to the supermarket because I still need to get my shopping.  The supermarket that I go to is a 15 minute walk away and then I come home and unpack my shopping and then watch tv again until I start making dinner and usually I will go and have a bath after I have watched Shortland street on tv.  On Tuesdays, Wednesdays, Thursdays and Fridays mornings I set my alarm on my Ipod for 6.45am and then let out Fanta and she comes and snuggles for fifteen minutes while I try and wake myself up.  On Tuesday mornings I plan been out of the house by 8.45am because I like to go into town first before I go to work at Trade Aid where I work from 10-12 and then I walk home and have lunch at home and then watch tv and play on facebook and I usually text Dad on Tuesday morning to see if we are having dinner that night or Wednesday night.  On Wednesday mornings it is my housework morning so from 9-11 my caregiver comes over and gives me a hand doing the housework and then after she leaves I watch tv for awhile and then I go into town to go and see Cricket (boss at Trade Aid) and then I come home and then I watch tv for the rest of the afternoon until I get in my washing about 3.30pm and then it depends if I have had dinner with Dad the night before I cook myself some dinner about 5.30pm and then on Thursday and Friday mornings I leave the house by 8.30am because it takes me half an hour to walk to the YMCA.  I work from 9-10.30am and then if it is a Thursday, my Mum comes and picks me up and takes me out to lunch and then after lunch I stay in town and then walk home again.  About once a month on a Friday I have date night with Bryan which I cook a pizza for us in my stove and we just hang out eating pizza and talking.  That is some of what I do during the week for my routine.

Superpowers

What is your superpower?  My superpower is helping families to understand what it is like living day to day with CDC.  I give hope where it is needed most.  Even though sometimes I need hope too in my life.  My name would be CDC girl and two of my superhero powers would be.  The first one would have to be flying because I would be able to fly all around the world helping families who have a child with CDC in person and give them hope and encouragement that they aren’t alone because I am a friend for life.  My second superpower would be to become invisible like snap my fingers and become invisible and then reappear with a single clap of my hands because I could go and visit people when I want to without anyone noticing where I am.  That would be couple of my superpowers.  Most of you would have seen my latest quotes on facebook as my statuses or in the groups that I belong too.  I am going to try and come up with different quotes each week and then when it is international CDC week I am going to post them in my blog as a blog and the seven that I like I am going to post one each as my status because it is important to me and a lot of you like what I write for my quotes as my statuses.  I am very proud of my quotes and I like sharing them with the whole CDC community, my friends and my family.