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Wednesday 1 October 2014

30 Day Boogging Challenge Day 2: 1 October 2014 The story of me and Cerebral Palsy (CP)



As today is world Cerebral Palsy  (CP) day, I wanted to share my story again. Those of you who have been members of my page for quite a long time will now know it well, but those of you who are new will not. Whether you have heard my story or not, here it is again. How are you celebrating today? I started off the day by posting on my Facebook and twitter pages, and Alfredo and I went out. I bought some make up that I had wanted since my last birthday back in December last year, as well as some other things. We also watched the news, but, here in Spain, there has been no mention so far of world CP day , and it is almost 8 o'clock at night. This surprises me, as there are many people with CP here and also active CP and disability organisations. I don't have green clothes so I wore  green eyeshadow. We still had a great day.
Here is my story. 

My name is Katherine Hayward, I'm 32 and I was born with Spastic Quadriplegia Cerebral Palsy, hydrocephalus and severe eyesight difficulties, which have led to me being registered blind. I rely on an electric wheelchair to get around. I was born in Kingston-upon-Thames, UK together with my identical twin sister Natalie, who passed 
away 9 days after we were born. I have a tribute page to her at 

http://www.facebook.com/pages/Tribute-to-Natalie-my-twin-sister/269861423116657?ref=ts&fref=ts


Natalie's and my birth was a real surprise to my parents as my mum , Anne , went into spontaneous labour , 3 months early. Natalie was born and the doctors were about to pack their equipment away when they noticed my mum was still in labour, and I was inside her, all the while being deprived of oxygen to the brain. I wasn't breathing when I was born at all and had to be revived and intubated , and immediately taken to the NICU. The same was true for Natalie. We were both on a ventilator in the NICU from the time we were born. At 6 hours old, we were transferred by emergency ambulance from Kingston Hospital , which was where we were born, to Queen Charlotte's Maternity Hospital as they had better NICU facilities as at Kingston they only had enough space to take care of one of us. At 3 days old, on Christmas day 1982, we both had heart attacks and had to be revived and we had an emergency baptism by the priest, as well the NICU doctors and nurses as they thought we would die at any moment. 
We pulled through...... and fought on.
Natalie fought on for 6 more days until she had heart and kidney failure , and passed away on New Year's Eve 1982. I had jaundice, recurrent conjunctivitis , heart and lung problems and suffered several bouts of pneumonia. 

I had a grade 4 brain hemorrhage on both sides of my head. The doctors did a CT scan and saw I had Spina bifida occulta and hydrocephalus . Then they saw I wasn't moving my body and diagnosed me with Spastic Quadriplegia Cerebral Palsy. I had blood transfusions, and at 2 weeks old, they performed a risky surgery to insert a Rickham Reservoir which drained the CSF . I was really I'll during the surgery and it had to be abandoned. It was then decided to insert my first Ventriculo- peritoneal (VP) shunt, a drainage device which drains the CSF away from my brain down to my abdomen where it can be better absorbed . Between the ages of birth and 11 years old, I had 4 surgeries to replace infected, broken or damaged shunts. I had numerous revision appointments with my neurologist. I would wake in the night or early hours of the morning vomiting , and have severe headaches. I got glasses when I was 2, as until then I couldn't see anything. My glasses don't correct my vision completely , and just allow me to see what I can , despite their complicated and high prescription . I have no lateral vision, and can only see what's right in front of me. I have tunnel vision , a bilateral squint , hemianopsia and am registered legally blind. 
My wheelchair is a lifeline to me. 


More About My Life 

In 1984, my sister Nicola Jane Hayward was born. 
I love horses, and cats (in my lifetime, I've known 3, Suki, Pippa, and Tala- Tala is now 11 years old and the others passed away). I'm a great believer animals are great therapy for anybody, especially disabled people. 

I studied Spanish and geography at Swansea University for a year from 2000 to 2001, and in October I transferred from Swansea to Reading University, where I studied Bsc Human Geography, and graduated in 2004 . In September 2004 to December 2004, I decided to to study a CELTA (Cambridge certificate for English language teaching to adults) at Oxford and Cherwell further education College in Oxford, as I had always wanted to teach English to people who didn't speak it as their first language. This became reality when in 2005 I had an interview at the British Council in London for a job post as a Language Assistant at a school.my first choice location was Madrid and I ended up getting the job, which I began in October 2005. Nine months later, I got a job through Berlitz language school at a summer camp in Cuenca, Castilla-la Mancha for three weeks. I have not been able to find another job since then and have lots of fond memories as I met a lot of great people. I met my partner Alfredo in January 2006. On my Facebook page and through my blog, I talk about my experiences living with my complex disabilities. My main aim is to show people what my day to day life is like living with my disabilities, and raise much more understanding and awareness of them. I also attempt to raise awareness of other conditions. 
Questions about my disabilities are welcome, as are your comments.
In the last year, I have persued my dream to become an author, and have written 3 books, The Spellbrooke Trilogy books 1 and 2 (Spellbrooke and Return to Spellbrooke: A Winter Curse. I have also written a young adult fiction book called The Secret Dreamworld of a Disabled Shopaholic. This book is partly based on my experiences as a shopaholic, but has fictional characters. I like to include some aspect of disability in my books. I am working on a fiurth one and also towards getting them published. I have studied an online creative writing course and am studying another online one about how to write a memoir. I hope to write my memoir someday. 




2 comments:

  1. An amazing and inspirational story. My son and grand-daughter were born at Kingston Hospital.

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    Replies
    1. Hi Judy thanks for commenting. I haven't been back to the area since I was born as my family moved to Sussex and then to Oxfordshire

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