Friday, 9 May 2014

My Quotes

We might view the world a little differently to most people.  We aren’t broken so we don’t need to be fixed.  We achieve things in our time and in our own special way.  We might think differently to everyone else but in our parents eyes we are perfect just the way we are.  All CDC people rock!!! Xox

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.

Most people see the outer beauty of someone not the inter beauty that they hold.  I see both inter and outer beauty when I look at my CDC brothers and sisters.

My CDC brothers and sisters and I are superheroes in our own right.  We may not fight against crime or super villains but we fight every single day to do simple tasks which most people take for granted like walking, talking and expressing ourselves the way in which we want to.  To me my CDC brothers and sisters are superheroes.

I know that I am rare and unique in my own way and today we celebrate that by showing support by wearing Jeans for those people who have rare syndromes and diseases.  For a lot of families who have children with CDC and other disabilities it is a chance to show off their unique children to the world and for the world to see how beautiful and precious their children are to everyone in their lives.

I love all my CDC brothers and sisters equally,  I don’t have any favourite brothers or sisters because to me they are special in their very unique way and it doesn’t matter to me whether they can talk, walk or run because I love them all with my heart.

I am a voice for those who can’t speak for themselves.  I am a beacon full of hope and a promise to CDC families.  I am loyal, trustworthy, hardworking, respected in the CDC community and I am beautiful inside and out.  I am everything that I have dreamed of becoming and so much more.  I have touched so many people’s hearts and lives.  I am accepted as being me into a wonderful family!!! Xox

I know what my purpose in life is and that is to teach the world about Cri Du Chat and help and find parents who need that extra support and guidance.  Once they have me in their lives I am not going anywhere and I am there for them and they aren’t alone anymore. I love helping new families connect with families that they might haven’t known that has existed before.

I am an inspiration to a lot of people.  I write my quotes from my heart which is filled with love, joy, honesty, loyal, truthfulness and a willing to help others in time of their greatest need.  Once families with CDC children become friends with me, you are a friend for life and I am your child’s voice for them, I will cheer on your child from the sidelines, wish them a happy birthday on their birthday because everyone needs a little bit of happiness on their birthday from their big CDC sister.  I will be there one step at a time as you need me.

If you look past the Cri Du Chat label you would see people with different abilities doing ordinary  things that our doctors said that we couldn’t achieve like walking, talking, playing with our siblings and friends, laughing, living our lives to the fullest of our abilities. We can achieve impossible things if we dream vast and the world won’t see us being invisible but we will be visible for the world to sit up and take notice of what is happening when we accomplish something amazing and wonderful.

I am an angel in disguise who is missing 13.1 on my 5P arm which is roughly about 80% in some of my cells.  I don’t wear a halo or wings to spread my message across I just need people to open up their hearts and love which makes the world go round.  I will fight for my CDC brothers and sisters any day of the week, I am a voice that will be heard and I will make a difference in their lives for them to have a better tomorrow.  I know my strengths and weaknesses which makes me a well respected member of the Cri Du Chat community. 

All children are exceptional but there are some children who are very unique because they have rare genetic syndromes and they will develop at their own pace with love and support, they can and will make a difference in someone’s life and they will let their personalities shine throughout the world.
Don’t take the small things in your life for granted because there are people who have Cri Du Chat who achieve the small things every day in their life.  It maybe a small achievement that you think is unimportant but to them it is enormous.  They could have been working on their milestone or achievement for years with the help of their families or their therapists to achieve something that is worth celebrating.  

I am grateful for my friends and family in my life and I am also grateful for not having the full syndrome of Cri Du Chat and that I am a mosaic so I can help spread the word about Cri Du Chat that we coexist within our communities, cities, towns and countries all over the world.  I am also grateful for my Cri Du Chat family who support me to be me and having me as a positive influence in their lives.  I am also grateful for expressing myself through words and beautiful quotes that I write. 
I am one of the Cri Du Chat community greatest heroes.  A lot of people look up to me because I am responsible, a leader, dependable and an inspirational woman.  When I look at myself in a mirror I see a hard working, intelligent, Kiwi girl who is committed to helping and working alongside new families who are alone and afraid of the diagnose Cri Du Chat to help them understand and to see their child’s potential through a tunnel of light, hope and a lot of love.

I think I know why I was given the gift of being a mosaic as my superpower because I can teach the world what it is like having Cri Du Chat and help educate the public what Cri Du Chat is all about.  My superpower comes from my heart because I love helping new families understand what Cri Du Chat is all about.  I love the tv show Charmed because they use their powers for good and to help people like I do. 

As most of you all know that I was diagnosed at 2 in a half with having Cri Du Chat.  When I started reaching out to families about five years ago,  I didn’t know what reaction I would get from families who had children more severe than me because I could do things on my own like reading, writing, riding my bike, cooking and speaking.  I soon realised that I could help the Cri Du Chat community with my knowledge and understanding what Cri Du Chat was all about.  Soon everyone knew who I was and I still am reaching out to families who need my support and help.  I won’t give up on my Cri Du Chat brothers and sisters.

I am a volunteer, a role model, someone who people can look up to and I bring light where there is darkness.  I am not the R word nor are my CDC brothers and sisters.  We deserve to be treated with RESPECT and understanding.  Words can be powerful and can hurt for a lifetime.  There are so many other cool words to use that people can choose from.  I don’t let my disability slow me down or rule my life and CDC doesn’t define who I am as a person.

I have a unique insight to what it is like living with CDC.  I am an inspiration to a lot of families but I am still someone despite my disability enjoys life and I have interests just like everyone else in the world.  I would like to share some with you, I like helping families on facebook to help them understand their child better.  I love playing scrabble with my Dad, love catching Pokemon on my gameboy, enjoy texting my friends and family, listening to music on my iPod. Love collecting elephants and also watching tv and reading books.  These are some of the things that I love doing because they are relaxing and peaceful to me.

Sometimes I feel guilty that I have a wonderful life and there are some things that my CDC brothers and sisters can’t do and that I can do.  I know that touch so many wonderful and shape so many lives  but when I look into my eyes of my CDC brothers and sisters I see how much joy they get from the simple things in their lives.  I am a voice for them the ones who can’t speak for themselves and I give HOPE to those families who need it.  I may walk with a limp because of my hip but my brain still works.

I have reached out and helped over 800 families through facebook over the last four years.  I want to thank everyone who has believed in me.  Cri Du Chat has taught me so many things like when to let go of things that I have no control over, Cri Du Chat has made me strong and made me fight for my CDC brothers and sisters.  Cri Du Chat has also made me some excellent friends for life.

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