I have cerebral palsy.
They say its severe and affects my whole body.
It always will.
liver... my hepatoblastoma. I wasn't rolling over yet. Maybe because of my
chemotherapy and the sickness I felt from the cancer-killing drugs,
I didn't have much energy and did very little exercise or therapy.
Because of my cancer, my progress was delayed.
My central line (cancer cords) were removed in February this year,
and I started rolling over almost immediately after they were gone.
The first time I crossed the room, wriggling on my belly, was soon after this.
My sister was crying and she needed me.
I made my way across the floor to her, to hold her ankle as she cried.
I was a mover.
Now, I don't stop moving.
Sure, I'm not running around. I'm not even walking without help... but,
I'm always moving. I have left the lounge room a few times now!
I have my own theratogs suit now, which is helping my muscles
learn to move the right way. I'm getting stronger and stronger.
I'm getting more aware of what to do and how to move.
I'll even eat some sandwich now!
My vision impairment makes it a little harder for me, too.
But, I am developing spatial awareness and know to keep still if I am too
close to the wall or hard furniture.
My sister is incredibly noisy, compared to me,
and I sometimes try to be noisy like her...
so, I am learning to use my voice.
When I was sick last time, I told Mum and Dad 'help' and 'ouch'.
Sometimes, I say 'more'.
Having cerebral palsy is expensive. I need regular therapy and am so lucky to have Zoe teaching me how to move. I need special chairs and suits and equipment, just to learn
what most kids do without trying. Even on holidays, I have to work hard to
make sure my muscles don't 'forget what to do'.
Sometimes, I get a blister from the walker, but I never complain.
Lots of kids walk past me on their way home from school. Some are riding bikes and scooters. Sometimes, Mum gets sad for what I might never be able to enjoy.
At first, everyone stared at me in my walker.
They whispered and wondered about me.
That's hard. One day, a boy saw me take some steps
and was so proud of me and spoke to Mum. That was a good day.
Having cerebral palsy means everyone can talk about me.
They can stare and wonder and whisper.
Having cerebral palsy means Mum and Dad can never just say "And, this is Dexter."
They have to add that I have cerebral palsy and then, people ask how I'm doing.
They say 'Fine', because sometimes, the truth is just too hard.
Sometimes, we just want to crawl into a little hole and cry and be away from everyone.
I've never run up to Mum or Dad and hugged them...
I have never said 'I love you'.
I would, if I could.
Having cerebral palsy stops me from doing a lot of things
and it makes everything much, much harder...
And, I love the people in my life... my family and good friends.
Having cerebral palsy will mean we lose some friends along the way...
because it's hard, this cerebral palsy life!
But, we have made new friends, too.
They are the people who see me...
a clever, cheeky, strong, determined little boy, with a great sense of humour.
Today is World CP Day.
It's our chance to speak up and teach the world about living with CP.
Today is a chance to remind people that just because my body
doesn't do what I want it to do, does not mean I am dumb.
Don't be tricked by that!
Having cerebral palsy doesn't mean I don't know what's going on.
They don't call me 'Cheeky' for no reason!
To all of you who see Cheeky Dexter... and not the boy who can't speak or move,
big kisses and love today, World Cerebral Palsy Day.