I saw you stare at me as I was walking down the slight hill of one of the streets into town. You were walking beside me and you stared at my hip and the way that I was walking. Yes I know I walk little differently to you and I walk with a limp. As you gazed at me you saw me trying to balance myself along the footpath using my arms trying to keep my balance, my arms help me to stabilise my balance so I don't fall over or trip up and hurt myself. It isn't easy to keep my balance on uneven surfaces because I need to concentrate to make that I look ahead for any objects that I need to carefully pass around.
I know that you were just being curious about the way that I walk and how I walk. I wanted to turn around and say take a picture it may last longer but I didn't because I am not that kind of person. My feet are my transport they get me to places around town even the YMCA where I work teaching 2,3,4 year olds that everyone is different in the world and they don't stare at me because I am someone they look up to and admire.
The reason why I walk like I do I have mild hip dysplasia which means my hips weren't formed properly which is caused by my syndrome Cri Du Chat or Cry of the Cat or 5P-. My legs might seem weak to you on the outside but they are strong on the inside. There is nothing that anyone can do to fix my hips because if they did I would lose the ability to walk and I don't want that because I would lose my freedom and independence because my family would have to drive me around town all of the time.
So next time if you see me walk pass please don't stare just give me a little smile and say hi. I might even say hi back.
livingwithcriduchatmosaicism
Thursday 5 November 2015
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.
Wednesday 7 May 2014
Cri Du Chat Awareness Week.
You all have heard it the high pitch cry of a cat but it isn’t
a cat. It is a newborn baby crying who
has just been diagnosed with Cri Du Chat or Cry of the Cat and you are feeling
scared and you feel like are the only one out there facing uncertain future alone. You don’t know where to turn to so you begin
your search on the internet searching through every website with Cri Du Chat in
the title and you stumble across some out dated piece of information and then
you start to panic about the future for you and your child.
It has happened to a lot of parents that I know of and I
have talked to hundreds of parents over the years. This is why we need a week to inform the
public, doctors, nurses, teachers and the list goes on, that the information that
the doctors and nurses give new parents is out to date. Cri Du Chat is one of the most common
deletion syndromes but yet we are so rare because the doctors don’t know a lot
about Cri Du Chat so we become experts and try and teach the world about our
amazing children and everything that they CAN do and not what they can’t do.
For this awareness week a parent suggested that we all wear
stripy socks one long and one short to represent the deletion from chromosome 5
should be and overall the support has been just amazing from all around the
world. On Facebook I have been finding 7 quotes one for each day of the week
and I am up to day 5 and I have had over 200 people like my statuses so
far. They maybe the same people who like
my statuses each time that I post one. I
believe in my CDC brothers and sisters and what they can achieve.
Monday 24 March 2014
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.
Tuesday 18 March 2014
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.
Tuesday 4 March 2014
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.
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