My CDC family

Currently I have 786 friends on facebook which are a lot of friends.   Most of them I don’t hardly get to see  because they live on the other side of the world.  They are my CDC family and we support each other through the tough times and good times.  I love my CDC family and I wanted to show how much I love my CDC brothers and sisters I am making a collage of photos for my house and under each one of those phones I am going to write their names and what country they come from.  I wanted to make a collage because I know most of them won’t leave home and this is one way of them leaving home and this way every time a visitor walks into my living room and asks what are these photos are.  I can turn around and say these are my CDC brothers and sisters and they live all around the world and that way I can spread awareness through out the community.  I love my CDC family to pieces,  sometimes I wish there was an Island that all our families could live on and see each other every single day.  If anyone in the CDC community is reading this and would like to join that who hasn’t expressed an interest in this send me a message through facebook and I will include your child/adult and then send you my email address so you can send me your pictures.

Love

What love means to me is that you know that the person that you are meant to be spend the rest of your life with understands and knows me better than anyone.  The first time I saw him was a Friday morning I had just walked into his workplace and with a big smile on my face.  I can’t remember exactly what he was wearing but I know that it was something sexy.  He had this big grin on his face and I remember thinking to myself he is hot.  Little did I know that he thought about the same way about me.  I remembered him telling me later on that he asked his boss questions about me and his boss turned around to him one morning  “she is coming in on Friday morning you can ask her yourself.”  We flirted straight away and I looked forward to going to his work on Friday mornings to flirt with him.  Fast forward to several months later at his work Christmas party we flirted and then I gave him my cellphone number and we hugged for the first time and then he said “I know sweetie that you don’t want me to go but I have too.”  To this day he still calls me sweetie.  I still remember our first kiss he was over one lunchtime at Kayla’s trying to set up msn for me and we were in my bedroom and we leant in and kissed.  I know that I make a lot of mistakes but then I learn from them.  I think he has taught me so much and he has been my rock from since day one.  I quit his work about a month back because I knew that it couldn’t work out if I didn’t do anything about it so I thought about it and I finally did it and I am never going to look back because I want to be his wife one day.  It isn’t easy having a relationship with a disability I think it is ten times as hard as regular relationships, we have our ups and downs but when it comes down to it I love him to the moon and back.  We text, facebook, Skype sometimes and have KFC once a month, sometimes twice a month.  I am hoping our time will increases when I move down the street that he is living on at the moment.  We have four times broken up over the last four years but then we have gotten back together because we can’t live without each other.  This is the quote that sums up our relationship up until now “If you love someone, set them free. If they come back they're yours; if they don't they never were.”  He has come back to me after we break up that is what is true love is all about.   He found this poem for me about two years ago on Valtine’s Day and I read it every night before I go to sleep and read it every morning when I first wake.  I have had it laminated by my bed.

If I Forget

If I forget to tell you just how much you mean to me, I hope that you will remember while your not here with me.
If I forget to tell you that you are my world and more, I hope that you will remember what I am waiting for.
If I forget to tell you I want you in my life, I hope that you will remember that I am always by your side.
If I forget to tell you I love you more than words, I hope that you will remember regardless of the hurt.
If I forget to tell you I am sorry for my mistakes, I hope that you will remember with every one I make.
If I forget to tell you no other can compare, I hope that you will remember the love that we both share.
If I forget to tell you I miss you everyday, I hope that you will remember your absence causes pain.
If I forget to tell you that forever is what I want, I hope you will remember that forever is what we have got. Whether I say these words to you, or wait until you are here with me, I will show you this forever, and these words will have no need.

10 more things you don’t know about me

1.       I was born in Wellington New Zealand and I was meant to be born on Christmas Day but came 13 days earlier on the 12th of December.

2.       I lived in Edinburgh for a year with my family when I was 6/7.

3.       My favourite food is chocolate

4.       When I was little I coloured in my parents new white duvet with red lipstick

5.       I broke my arm when I was 8 I was skipping on my trampoline and tripped on the skipping rope and fell onto the concrete and my mum didn’t believe me until my dad came home and said it was broken.

6.       My parents divorced when I was 10.

7.       I have a sister called Rebecca and a brother called David and two stepsisters Abby and Hannah and two stepbrothers called John and William.

8.       I just know about all my CDC brothers and sisters names in USA, Australia and New Zealand.

9.       My CDC brothers and sisters are my heroes because they defy their doctors’ expectations every single day.  I am also one of their biggest supporters in whatever they achieve to the best of their abilities.

10.   I have two best friends called Kayla and Blue.

Houses

Houses mean a lot to different people, its somewhere dry, warm, a shelter from the rain.  It is also where families are raised.  I left home at the age of twenty four and ever looked back.  I moved out because my sister was leaving home and going to uni.  My brother left about five years earlier to study at the same uni as my sister.  I wasn’t ready to leave home when my brother did instead I ended up living with my Mum full time.  So when I moved out of home I moved in with my best friend from high school Kayla, (she needs full time care seven days a week.) another girl called Theresa and then Blue who lives out the back in her own flat.  Six months went by and Theresa moves out for all sorts of reasons.  So finally after nine months of Blue, Kayla and I, Kate moves in and things were going great until she broke my trust and our personalities clashed and still do.  So about a year of putting up with her rules and stuff, I wrote a letter to my parents explaining to them that I wasn’t happy living there.  He changed his mind in that weekend and he said that he would buy me a house so my stepmum, Dad and I began searching all over town and then we finally found a house for renting about three months later because Dad wanted to see if I could manage on my on my own for a trial period and I exceed that by six months and still going strong after being a year on my own.  About a month ago I saw on Trade Me (New Zealand’s website to sell things like eBay) a two bedroom, two bathroom and garage for sale so I emailed Bryan through facebook, sent him the link and he said go for it.  So I texted my Mum who liked it as well.  Then one Saturday evening Dad rang me on my cellphone because I was going to go and watch the rugby All Blacks vs Ireland.  I told Dad let’s go and drive past this house.  Dad really liked it and so on that Tuesday afternoon we went and had looked inside it.  The house and the location were just perfect and it was just what we were looking for.  So for almost a month I have known about the house and being keeping it secret because I wasn’t quite sure if we were going to get it because of the tender and it is not often I don’t share secrets.  Only a handful of people knew that I wanted to buy that house.  Thanks Dad for believing in me and I will enjoy my new home.  For me a house is a home where I can be independent as possible and have freedom away from my parents.  Who would have thought that one of my dreams has come true.  Now if I could the other dreams and goals in place then my life would be perfect.

Children

Most of my high school friends are starting to have families and on the odd occasion I get a little bit frustrated because I realise that I can’t have children because of CDC.  I got a little bit jealous a month or so back when one of my YMCA bosses took a home pregnancy test and I realised then I would never pee on a stick and watch it turned whatever colour it is meant to turn.  But then I realised today as I was watching Lucas play with his friends at his birthday party (he turned 6) and picking up two year old Noah and hearing Noah say mine to Lucas birthday cake that I can still have fun around children and I don’t need to be a Mum to do it. I think that is I love working at the YMCA because for two mornings a week I am a role model and young children don’t ask me questions like why are you different?  What is wrong with your hip? Or why do you talk so differently?  I couldn’t bring a child into this world knowing the full effects of the syndrome.   I think the parents who do are pretty awesome with their hard work, dedication and knowing that their children are going to take a little time to reach their goals and full potential including my Mum and Dad (Rob and Andrea also).  I don’t say this very often to them thank you for being there when I need you guys and thank you for helping me live independently and I love you!!!

10 Things that people don’t know about me

1.       I don’t like being touch by people that I don’t know.

2.       I know all the words to American Pie by Don McLean

3.       I know all the states of USA even though I don’t live in the USA.

4.       I am proud of my brother and sister in whatever they do in life and I love them to the moon and back!!!!

5.       I love anything to do with Vampires and the supernatural.  It all started with Charmed and then I read Harry Potter and then Vampire Academy, I am currently reading the True Blood series in books.  True Blood and the Vampire Diaries and Charmed are three of my favourite tv shows.

6.       A lot of people don’t realise that I am intelligent even though I have a slight intellectual disability.

7.       My favourite animal is the elephant.  I am starting to collect elephants. I have 9 elephants in my collection so far.

8.       I will beat my Dad at scrabble on Wednesday night (20th of June).  Scrabble is one of my favourite board games of all time.

9.       I reach out to new families who have CDC and I try to help them by telling my story and I met my first person with CDC when I was fifteen her name is Hanne and she lives in Australia

10.   I wrote this quote on my cellphone first of all when I was meant to be working the idea came into my head.  I am a daughter, sister, person living with a disability, an aunt, a friend, a granddaughter, a niece, an inspiration, a role model, an adult, I am a cook and a member of society, a cousin, and a light in this world, I am all of these things and so much more.  I have CRI DU CHAT SYNDROME!!!

Walking

I love to walk in the sun, rain, wind and in other weather.  So on Sunday night I download a pedometer onto my IPod to measure how many steps it takes me to walk around town and do what I needed to do.  Each Monday I go grocery shopping and so I thought I would test out my pedometer and I checked it several times throughout my walk and when I got home I had discovered that I had walked over 4737 steps.  I know wow that’s a lot of steps and the distance that I covered was 3.382 KMS.  I do a lot of walking during the day like for e.g. I walked up to my Mum’s to feed her cats because she was away and I get paid to do a five minute job.  It takes a lot longer than five minutes when you are walking everywhere.  On Saturday afternoon I went up to feed the cats Muffin and Beannie and didn’t actually get home for 2 hours and a half.  The only thing I don’t like about walking is, walking in the dark.  Every Friday night I go and get KFC and it is winter over here in New Zealand and I try to set off about 5pm before it really gets dark.  Sometimes I get a ride home if I am having dinner with someone that I know.  I know people are a little concerned about my walking with my IPod on and my hoodie up but I am very aware of my
surroundings and I don’t like uneven surfaces because it is the way that I walk,  I walk with a limp because of my displaced hips I even can’t run.  One year we went camping and one of my Mum’s friends said that was a short walk to a waterfall about half an hour walk up a little track.  It took like me two hours to walk up that track with one of my cousins, my Mum, my stepdad and my Pop while all of my cousins raced up and I got left behind because the track was uneven and I didn’t even complain once and when I got to the waterfall I sat down on a rock and read my book because it was slippery for me to get into the water. 
For all those who are concerned about me walking with my headphones and hoodie up and seeing cars.  I take down my hood and my headphones out to hear the traffic and see the traffic especially if it is a busy morning.  Walking gives me independence and freedom in a way that most people like to drive.