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. 

I have a name

I have a name before my diagnose which is Cri Du Chat or 5P- or Cry of the Cat or CDC for short.  I have families that respect me for me who haven’t meet me but have heard of me through facebook to them I am a hero.  Sure sometimes my body doesn’t work the way that it is meant to but I still have a brain that still works.  I don’t consider myself to be a hero because what I do is try and spread my life story, yes I have had my struggles and ups and downs in my life but I have stayed true to the person that I am and the person I want to be.  I have known some families for about four years and I know their CDC child’s name, how many brothers and sisters they have, where they live and how old they are and when their birthdays are. When I first started this journey of self discovery to search for families who have children with CDC, I didn’t realise that how many families I would be helping over the years, for me it isn’t hard work trying to reach out to families who haven’t heard of the 5P- Society in America, The Australian support group or any other facebook groups that they might join.  I don’t turn anyone away just because they a different race or if their child is more serve than I am because I am trying to help them understand what CDC is all about and here are some quotes that I have written over the past four years and I am going to write some quotes when I can think of some more.

I am a daughter, sister, person living with a disability, an aunt, a friend, a granddaughter, a niece, a girlfriend, an inspiration, a role model, an adult, I am a cook and a member of society, a cousin, a volunteer and a light in this world, a fur mama to Fanta. I am all of these things and so much more. I have CRI DU CHAT SYNDROME!!!

If you wiped out people with disabilities there wouldn’t be any colour in the world any more only black and white and we need to have colour in the world in order to show each other love and compassion and understanding for one another.

To all my wonderful CDC families make your children's/teens/adults achievements and milestones into tulips from Holland. Pick a tulip and put it on your kitchen bench and let the sunlight grow each of those tulips. Yes you will get some dying tulips along the way but some tulips will be everlasting throughout their lives.