And then, something will happen and it will feel like a slap on the face.
And, the cerebral palsy will seem like such a huge burden to carry.
Those days hit you hard and the heartbreak makes it hard to breathe.
Convoy makes us feel that way.
We want to share this with you, but we are afraid to.
We want to share it, because we share all of my stories... the good, the bad and the ugly.
But, we don't want to share it, because we think we will be misunderstood, and judged.
We are not complaining. We are just hurt. And sad.
We wrote this last year... But, we were not brave enough to share it.
Dexter is a survivor of childhood cancer.
The fear of cancer is always there, though it is usually pushed to the back of our minds.
We won't forget the cancer journey... We can't forget.
But, we have other things we have to deal with.
It's like my four months in hospital, as a premature baby... Sometimes, we 'forget' those months.
It's like my vision impairment... People tend to forget I can't always see.
And so, because of my cerebral palsy, my cancer history doesn't get the focus of our worries or energies. It's not our biggest worry... It's not our biggest fear.
My cerebral palsy takes up too much energy and focus.
It's hard, at this time of year.
At Convoy.
The other kids, like me, are able to have so much fun.
The other kids with their own awful cancer stories...
They get put on motorbikes and ride in cool trucks.
They wave their flags around and celebrate.
They smile and cheer. They dance and laugh. They watch the bikes and trucks and celebrate.
They get lots of love and attention.
And, they deserve it.
Childhood cancer is hard!
And... I deserve it, too..
But, my cerebral palsy scares some people away. Some people don't know how to include me. They don't know how to put me on the motorbikes. They are a bit scared by me. And, I don't smile and answer, so I can be a bit frightening. And so, I sometimes miss out.
What people don't realise is that Mum always ends up in tears, at Convoy. She cries not only because of my cancer journey memories, but because I can't do what the other kids do.
She cries for what I miss out on.
Seeing the other kids having so much fun really reminds Mum and Dad that I have quadriplegic cerebral palsy and that I end up having to miss most of the fun.
We hate that we might seem so negative; bitter and negative... but the pain and tears are real.
The heartbreak is real.
For us, Convoy ends up being a huge slap of realisation of the 'can'ts'.
I can't sit up.
I can't run and play.
I can't cheer and wave.
I can't talk to the truckies.
I can't watch the trucks.
I can't climb into a truck or onto a bike.
I can't stand.
I can't feed myself.
I can't talk.
I can't walk.
I can't.
We always look for the 'cans'. We always find a way. We always search for inclusion. We always say 'No limits'.
But at this time of year...
This reminds us of the limits and we feel incredibly lonely.
Our hatred towards cerebral palsy is real.
Our tears are real.
We post this because we think people may misunderstand our reasons for not celebrating Convoy. We post it, even though we are terrified of the judgements we may receive.
We hope everyone had a great day. We do.
We're just not strong enough to celebrate it with you.
Mum was Crying in the Ball Pit
What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word
About the Sisters
Dexter's 2013
Dexter's First Month
Dexter's Vision
Dexter's Cerebral Palsy
Dexter's Cancer
Who is Dexter?
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