It is World CP awareness day, and I am really excited to be spreading awareness for this great cause that affects 17 million people worldwide, of which I am one. This year, I started getting into the spirit for spreading the word about the day early and logged onto the world CP Day website where I was invited to share my story on the map of the world to show where I would be on world CP day . As always when I’m writing, I got a bit carried away, and found it hard to stay within the 500 word limit for the site, but I did it. You can see my entry here. I know that the CP awareness colour is green, which isn’t my favourite colour, but when it comes to awareness days, anything goes with me!
This July, I did Camp NaNoWriMo and my project was a personal poetry book called Musings of a Powerchair Princess, I haven’t shared my work anywhere but in a critique group and wanted to share a poem with you for this special day:
I HAVE CP, I DON’T SUFFER FROM IT
When I was born, they knew something was wrong.
I couldn’t breathe , wasn’t crying
I was with my twin but unaware
My parents were worried
The doctors and nurses worked to save us
for hours, days on end.
Since then, I’ve lived with cerebral palsy and hydrocephalus.
Some people say “suffer from” I say have- it’s part of me, not the whole me.
Although I live life without my twin, I’ve always accepted my disabilities.
The hard thing is getting society to change,
Accept me and all the other people with disabiliies.
©2015 Katherine Claire Hayward . All rights reserved
I own green make up and also a green clutch bag. The green clutch bag was free years ago with an issue of Glamour magazine, and I just use it now and then. For this entry , I have put my green make up inside it and I want to show you what I have that is green. I have green nail varnish, green eyeshadow in my medium make up bag palette from Sephora, and also green water shadow by Kiko Makeup Milano. I had hoped to buy a cerebral palsy awareness necklace, but I didn’t have time to order one as it worked out. I have green earrings which I bought years ago and also a necklace with a green stone that my auntie and uncle gave me as a birthday gift also many years ago. I am hoping to buy a CP awareness necklace for the next CP awareness day.
My CP Story
People who don’t know already are often curious about my story regarding CP. Mine is more complex than just CP as I have hydrocephalus and a VP shunt too. This is the slightly longer version of the story that I posted on the CP Day website.
My story started 33 years ago in Kingston-upon-thames, London UK.
On 22 Mum went into spontaneous labour. This may have been fine in other circumstances but it was much too early- 3 months in fact.
My identical twin sister Natalie Jane Hayward was born on 22/12/81 shortly before me. Mum’s labour was difficult and the doctors and nurses thought her labour was over when they noticed I was coming. No-one was expecting this as mum didn’t have scans.
We weren’t breathing at all when we were born, and were hooked up to life support in the NICU. We only weighed 2 lbs 6 oz each (as much as a bag of sugar). We both almost passed away on Christmas day because of severe cardiac arrests. We bounced back though. Despite her fight, complications of her prematurity and kidney failure meant that Natalie passed away at 9 days old.
I was still in the NICU on a ventilator. The doctors were worried about my head size which was growing and growing. The I was diagnosed with hydrocephalus, which literally means “water on the brain”. This isn’t water but cerebrospinal fluid which surrounds the brain and protects it. I can’t re absorb or control the amount of CSF, so the doctors gave me lots of blood transfusions before they prepared me for surgery and tried to put a shunt inside my head when I was 2 weeks old. The shunt is a valve and a tube which drains the CSF from my brain to my stomach. The doctors also noticed I wasn’t moving at all and diagnosed me with spastic quadriplegia cerebral palsy . In total I was in hospital for 3 months. All my disabilities were caused by two grade IV brain hemorrhages (brain bleeds) on either side of my brain.
When I came home the doctors saw I was developmentally delayed and I couldn’t see at all until I was 1 and a half years old. I use an electric wheelchair and wear glasses, although they don’t correct my severe visual difficulties and I’m registered blind. I have astigmatism, hemianopsia (blindness in one half of both eyes) , squint in both eyes nystagmus involuntary eye movements (my eyes constantly wobble from side to side) no lateral vision and spatial awareness difficulties meaning I can’t judge distance, speed or depth. I require help in everything.
My shunt was changed 4 times between birth and 11 years of age, as I had symptoms of vomiting, severe headaches and dizziness plus visual disturbances.
I went to a school for children with severe complex disabilities in Sussex and then onto Mainstream school in Oxfordshire where I had full time one to one assistance. I noticed I was different from other kids when I was 7 and I was mostly ignored by them.
I’m really proud that despite my disabilities I finished secondary (high) school and went onto University (College) twice, but graduated from one of them. I’m fluent in Spanish and engaged to my lovely fiancée Alfredo. I have had good times and bad in my life and wouldn’t change any of it or the fact I’m disabled for the world, as I know no different.
Please feel free to see my YouTube videos “Introducing ….ME! ” and ” my education as a person with complex multiple disabilities” as well as the rest I’ve made since Christmas 2012. Please subscribe to my channel too 🙂 My Channel is cpchick.
I’ve already achieved a lot of my dreams in life: to become fluent in Spanish, live in Spain, and write my first book. I’ve now written six books over the past two years, and my dream is to publish them. I’d also like to get married to and have children with my partner Alfredo. I constantly dream of more disability awareness for not just CP but all disabilities, and put this into action by advocating every day through my Facebook page, Katherine Hayward my life with Cerebral Palsy. I love to read, blog and write books using voice dictation software for my iPad and computer. I love swimming, horses and cats. My favourite colour is the colour purple and I love leopard print and glitter.
To make all my dreams happen, I have to keep working on my writing, Facebook page and blog, and Alfredo and I need to plan our wedding and future.
As always, I am really enjoying CP day and hope that wherever you are in the world you are too!