Everyone knows that I have Mosaicism but what just is Mosaicism
you ask? Mosaicism means that some of my
cells have 5P- have in them, I have 30% of my blood cells are affected. I have a very large deletion in my cells,
actually I shouldn’t be doing the things that I am doing like talking, walking,
living independently, having a boyfriend, writing, reading, cooking dinner and
going food shopping by myself.
There are some downsides having Mosaicism is that I don’t
like crowds because I go into sensory overdrive and I really don’t like really noisy
places or any social events with over twenty people that I don’t know or I do
know but don’t how to socialise properly.
Next week is my Mum’s birthday and she asked me to today do you want to
do lunch or dinner next Thursday for my birthday and I turned around to her and
said lunch and Bex can join us for lunch to celebrate. Even if we go out somewhere like that I take
my gameboy so that I can sit and play on it while everyone else is busy. I get really tried quickly if I go into sensory
overdrive.
I love my routine because I know what is going on and where
I am and what I am doing. I love
mornings because I can better concentrate on something in the mornings better
in the afternoons because I need to take breaks from what I am doing or
otherwise I think I would lose focus on what I am doing that is why I only work
on Tuesdays from 10.00am until 12.00pm.
Thursdays and Fridays mornings from 9.00am until 10.30am (my disability doesn’t
come into my role at boogie buddies) and on Monday mornings I sleep in but I
think that is going to probably next year and then I go and do my grocery
shopping with my caregiver but she didn’t turn up this week so I went and did
it on my own and stuck to my list and on Wednesday mornings I do my housework
while listening to music and dancing, most Wednesdays I have lunch with my Mum
to catch up and to swap magazines and to shop.
Then I go up to Dad’s for dinner and hang out with Dad and Andrea
(stepmum), Abbie (stepsister) for the evening and then Dad drops me home.
I have a slight intellectual disability but it doesn’t stop me
from living my life and I have a really supportive and loving family who would do
anything for me and a really handsome boyfriend that who loves me no matter
what happens. I think I have paved the
way for other CDC children to fulfil their goals no matter what they have to
overcome to reach their goals.
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, and a
light in this world, I am all of these things and so much more. I have CRI DU
CHAT SYNDROME!!!
Rachel, I also have 5p- Mosaicism except mine is in 50% of my cells/body. I was only labeled as LD (learning disabled) in reading and math. I am a mother with 2 kids. I take care of everything on my own for the most part. I also have Jeff that works as a truck driver and he is gone all week long he comes home on the weekends. Each person is different and reaches their own goals on their own at their own speed. Most people in general don't like big crowds or noisy places and all have their own way of dealing with those issues. Good thing that you found your way to deal with those issues like other also have done. What you describe above sounds like everyday issues for anybody.
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