As many of you know, it was cerebral palsy awareness day yesterday, and I did a lot of work for that.
What I didn't tell you though was my story, which started 31 years ago in Kingston-upon-Thames, UK. My parents Anne and Paul Hayward had married a few years before and they decided they really wanted a baby. I was born one of undiagnosed twins, and I was the "surprise" baby, being that Mum had been reassured by her gynecologist that the pregnancy was going ok and there was no need to worry. Mum's due date was in march 1982. At the time, her sister Debby was pregnant with my cousin Michael who was born full term and isn't disabled, who's less than a month younger than me the way things actually worked out, but I'll leave that for my book which I'd also like to share with you once the first chapter is done (soon I hope! ), OK, I'm rambling a bit , so I'll stick to the title of this blogpost.
Mum felt unwell and went to the gynecologist who said she was in labour.
My sister Natalie Jane Hayward was born on 22/12/81 shortly before me.Mum's labour was difficult and the Doctors thought she was done when they noticed I was coming. We weren't breathing at all when we were born, and were taken to the NICU. We weighted 2lb 6oz each and were born 3 months early. Despite her fight, Natalie passed away at 9 days old. We both almost did when we were 3 days old and had an emergency baptism by Hospital staff and a priest.
I was still in the NICU. The doctors were worried about my head size which was growing and growing. 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 put a shunt inside my head when I was 2 weeks old. The shunt drains the CSF from my brain to my stomach. The doctors also noticed I wasn't moving much 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 a grade IV brain hemorrhage (brain bleed) .
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 special school 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 last Christmas (subscribe if you like). My Channel username is cpchick. .
No comments:
Post a Comment