Mum and Dad were told (when I was still in the NICU) that I'd come home unable to drink milk and so, would be reliant on a feeding tube... wrong.
No one could tell them whether I'd ever walk
And, we still don't know what I will be able to do.
Specialists told Mum not to worry about my learning to speak, as I would be unable to communicate without the use of technology (like computers).
I still don't speak, but my sister is teaching me to make more noise.
And, while we don't deny my severe cerebral palsy... there's no point in denying it,
it is so obvious...
We can still have high expectations, because.... without high expectations, no child would ever achieve anything beyond the very basics.
And I have continued to meet expectations - though they may be very, very different to my peers' expectations. I have met them and we have raised the bar, aiming for my next goal.
My current therapist is awesome, great, fantastic, wonderful!
She's not afraid to reach out and touch me!
She cares for me... and perhaps, even... loves me a little bit. I'm not just a 'job' to her. I try to do what she wants, because she believes in me. She calls me "Cheeky". She knows me.... she sees me. Thank you, Zoe!
But, labels hurt.
Let's put it this way: Imagine your child being labelled...
the dobber... the bully... the sook... the smart kid... the naughty kid... the dumb kid... the teacher's pet... the kid who smells bad or, the one who always hits...
No one likes labels... and yet, with me,
sometimes people throw labels at me without thinking about it.
I'm just like your kids... I don't want to be labelled!
Here's what I ask... No labels. No pity. No sympathy. No limits. No mocking and no comments about how I look funny.
Here's what I ask for... Empathy. Patience. Acceptance and love. Understanding and support. Genuine friendship.
And, don't tell Mum she doesn't understand!
It cuts her to be told she doesn't understand, when she understands far more than people realise. She would give everything to have me running around
and tripping over, to come crying and whinging to her,
to have me clinging to her and saying her name.
Mum and Dad would give anything to not understand just how heart-breakingly difficult and isolating it is to have a child with a vision impairment and severe cerebral palsy.
And, they've endured and survived 4 months sitting in the neo-natal intensive care unit and 8 months of cancer hell. They understand, alright!
So, no labels.
And, teach your children to see my strengths - my determination and courage, my patience and grace, my concern and love, my cheekiness and love of life.
Teach your children to see me.
Read Mum's latest blog post here. She's so brave.