I could of sworn that I had wrote an article on here about Shelley but as I looked through the archives, I could not find one. Therefore, here is a little introduction to the monster, gremlin oh bugger it, my inspiration.
Shelley is my younger sister and thankfully for the world, there are no other brothers or sisters. From time to time, you will see that I mention Shelley within my articles and I thought this would be a good opportunity for you to get to know her a bit more.
You might be aware that Shelley is very unique and someone that is very special. Although born normal, Shelley was to be left brain damaged by medical neglect. This is in the form of Cerebral Palsy and Autism to name but a couple of complexes.
At barely a toddler, Shelley developed a severe viral infection. On numerous occasions, she was taken to the doctor but was left untreated and my mother was warned not to waste the Doctors time as it was just a cold and could be treated at home. This then developed further into pneumonia and in short, Shelley was rushed to hospital and had to be resuscitated three times.
I won’t go into too much about the time Shelley was in hospital. I was three years old at the time and although it was scary seeing Shelley in the Intensive care unit, my child like mind protected itself. I somehow saw a resemblance of Winnie the pooh, with Shelley surround by tubes. I still have not worked that one out, even today!
After a period of time, My parents were told by a consultant that they should just walk away and leave Shelley to the care of the government. The care of a Tory government? yeah right! Despite so many uncertainties, there was no way my parents could turn their back on someone so major to our family. They were to walk on foreign ground with knowing so little of what was to come and that included whether or not Shelley would live past two years of age, an age that was her predicted death age.
As years were to go by, the realization of the damage caused to Shelley was to become more and more apparent. Through her whole childhood, Shelley was 3-1 care at best and so often, more was needed. Sensory issues such as an over developed sense of smell, hearing and taste were to come to the forefront. A fear of being overcrowded, even by one person, caused trauma to Shelley.
We were to discover that Shelley would always be left in a wheelchair, barely speak, doubly incontinent and partially sighted.
To say Life would not be normal is an understatement but I can say for us all, there is never a single regret of keeping Shelley in our lives. She lived at home with us until I was 12. Dad worked full time, Mum cared for Shelley 24/7 and I helped where I could despite having my own limitations of being a child. There was some respite with a day center which Shelley attended and a loving family from Wellingborough also helped when they could.
Shelley was put into a care home when I was 12 due to government funding being cut for respite care. This meant that many centers were to shut down. It was decided that people with special needs could attend mainstream schools. Maybe some can but who ever came up with the idea, entirely forgot about people like my sister. It was an agonising decision for us all but we just knew, that on the long term, Shelley would be better off in a specialist home where there was the routine and care that she required.
It took quite some time to find the right home and we even tried and tested various homes which simply did not meet the requirement of care, that was needed. I won’t go into all the ins and outs of each home but there have only been two good homes. There is the current home that Shelley is in. It is operated by Sense and the progress that Shelley has made has been enormous. Since moving in, Shelley has grown so much as a person, her care requirements are down to 1-1, 2-1 when unwell. The other home was operated by the RNIB, Shelley was moved away due to the RNIB selling the then home and locating the residents to almost two hours away, each way.
So why is Shelley my inspiration? Of course, there have been many hard times, I cannot even exaggerate the frustrations, tiredness, pain that we have all gone through but Shelley’s fight, her laugh, her smile, her progress all erase the difficult times that we have faced. Shelley has this special way of getting under everyone’s skin but in a nice way.
Shelley has faced and climbed every mountain that has come her way and taught me to leave the mountains behind, when I have my own challenges.
We have witnessed so much discrimination towards Shelley and even from our family members. Yet, anyone who has taken the time to get to know Shelley will soon learn what a special, young lady she is. We are now less than a month away from celebrating her 32nd birthday.