Technically we could argue that God has made me or if we want to go down the biological route, my parents and there is no doubt that all 3 have helped to define the person I am today but there is a greater factor in the assistance of my character, not to mention my grandfather who was a great influence to me as well.
My earliest memory was when I was 3 years old. I was marched along a hospital corridor to the maternity unit in Northampton general and as I was lifted up by my father, presented in front of me was a mass of tubes, wires all encased in what appeared to be a glass cabinet.
Amongst this mess was a very small and little baby girl, this girl was my sister that I had much anticipated to be born but born a lot earlier than expected. My toddler like mind protected me from the horrors that was in front of me and led myself to the conclusion that Shelley looked like pooh bear and after that announcement Shelley has never lost the nickname.
Little was I to know that the journey of the next three decades was going to be so defining. There will be stress, there will be tears, some good times and some of the most rewarding moments that an imagination cannot dream off.
After a period of time in hospital, Shelley was allowed home and things seemed okay. Until one day Shelley developed a cold. This cold was soon to turn into pneumonia and despite trips to the doctors, Shelley was not treated and my mother was told to stop wasting the GP’s time.
One afternoon, Shelley’s God-mother came over, who was a nurse. With being medically trained, she could tell something was serious and mum called the Doctor out one more time. There was no time to call for an ambulance and the GP rushed both Shelley and mum to hospital (dad was working abroad). On the way Shelley had to be resuscitated several times and ended up in intensive care. This sadly left Shelley with serve brain damage.
Shelley managed to pull through but not without problems. She had gone from being a happy baby to suffering from serve cerebral palsy and autism. It might have been that Shelley was autistic anyway but that said her cerebral palsy and other medical issues had resulted from the brain damage and the medical advice was to simply leave Shelley at the hospital and forget about her.
I would never judge a parent who would leave their child and walk away. We all have different paths in life and each one of us deal with scenarios differently. Thankfully though, walking away was not an option for any of us regardless to the fact we had no idea what was to lie ahead.
As Shelley grew older, the extent of the damage became apparent. Shelley as a small girl was 3-1 care. I can’t even put into words the severity of her meltdowns but I remember many times when it took 3 of us just to hold her down for her protection.
At the time I didn’t know any different but my childhood was not the same. I had learnt from a young age the role of a career. I was able to attend school but there were times where after school activities had to be missed to assist in looking after Shelley and friendships lost.
With Shelley’s Cerebral Palsy, her mobility is very limited and Shelley is wheelchair bound. She is also doubly incontinent and speech is extremely limited to just a few words.
With Shelley’s Autism which is classed as low functioning, she could not show affection until the last year. She could not go down the washing powder aisle in a supermarket without a meltdown, the smell too intense for her over developed sense of smell. Relationships cannot be formed and if her space is overcrowded, Shelley will hit out. She would not hit for aggression but to communicate her desire to be left alone. That said Shelley will self-harm in pulling her hair, scratching herself and hitting her head. Even today for her protection, Shelley wears some arm splints.
There have been plenty of times when we have been injured ourselves but the pain is worth standing by Shelley. Every now and then, there would be a sign of hope and a memorable moment.
There was some respite care which was a help but very little and then at 9 years old (Shelley) the, then Tory government axed funding for respite care with goal of having all disabled children in mainstream schooling. The only problem with this Genius idea was that people like Shelley could not go to mainstream school and all respite care was gone.
Mum, dad and I struggled on for a while but the hard decision had to be made. Shelley would be better off in a care home. It had become exhausting for all of us and despite some of the vile comments suggesting that we were abandoning and did not love Shelley, we did this because she needed it.
I remember many journeys of almost two hours of excitement to visit Shelley most weekends in Lichfield but I also remember the journeys of home of tears and sadness of having to leave her behind.
The Lichfield home was good but not right for Shelley and we had thankfully found an RNIB home nearer to home in Kettering (our then home was in Northamptonshire). Shelley is partially sighted and the home had a wing for people like her. She had some good years and actually started to show some improvement, the meltdowns were lessening and Shelley was starting to tolerate some breaks in routine and social outings.
The RNIB were to relocate the Rushton hall home (famous for guy folks plot planning and the first ever bay window) to a 1940’s ex-military, flat roofed building in Coventry and here Shelley did start to go back down. We were lucky to be able to work with the Charity ‘Sense’ and help raise the funds and get the planning permission to open a new home in Kettering and Shelley was to have a place there.
To keep this part short. This is the stage where Shelley has really blossomed into a young lady. There are still issues but the Autism has mellowed and meltdowns are long apart. She will never be cured but Shelley has learnt with age how handle her problems to the best of her ability.
There is so much more I could share about Shelley’s life and maybe in another blog I will but we are now 1072 words long. I have a habit of dribbling along.
So how has all this defined me?
Let me first of all tell you about a little miracle. When my parents were advised to turn their back on Shelley by the doctors, they were also told she would be lucky to live past two. On the coming 1st October 2015, Shelley turns 30 and as still with us today!
The defining part is watching the journey Shelley has been on. Sure there has been a lot of pain both emotionally and physically for us all but I am blessed as I have the most precious sister in the world. She has taught me how to fight. She has shown me strength that I can only dream of having and to overcome so much adversity, her will power is second to none.
Shelley has the laugh of a monster but a smile that melts all hearts. There are no regrets, there is no bad feeling but only admiration. Any hardship has been undone by the person who Shelley is and anyone who has been able to be close to Shelley will vouch that somehow she really gets under the skin and deep routes into every ones heart.
Many people have someone they look up to, an actor or perhaps a pop-star but for me, it is my special little girl, my little pooh bear. Happy 30th birthday to my special princess.