#ofitall

There’s a photograph of me as a child that I often find myself peering at. I don’t know how old I was but I must have been about 8 or 9, sitting on a chair on my knees in a blue and white gingham dress with the window to my back garden behind me.

This photograph sits in my lounge. I love this photograph as it shows an altogether different me. My smile wasn’t a smile, but I understand why now. I’m not looking at the photo in terms of how young I looked, but it was the look of innocence in my eyes. I trusted back then.

I wasn’t aware of my spiritual prowess or understand exactly how my spiritual beliefs worked, but those beliefs must have played their part: because I believed others had the best of intentions and never stopped to question their motives.

But as I began to grow, I began to understand more and began to believe less. Knowing I struggled mentally and emotionally and knowing nothing was being done to help me, it was easier for me to see the cracks in others’ handling of me and a disability I didn’t know I had.

It was clear and obvious I had physical problems. My left leg was smaller and thinner than my right and my left foot wasn’t a normal shape. I didn’t know about my arm at the time or what the diagnosis was, let alone the right diagnosis.

Although I was bothered about all of those things my main concern was not knowing what was wrong with me and having to live and struggle in my own secret world.

I continue to find it difficult to believe that I was kept in the dark for 46 years not knowing I had Cerebral Palsy.

I compare my sorry experiences to that of a TV programme I recently watched about a 6-year old boy who had Spastic Quadriplegia and was having his home adapted to support his needs with his parents and sister, who could not have done enough for him. Emotional stability is important at all stages of a child’s life, even more so when it comes to disability.

I can’t believe that I went to the hospital every year for 15 years and didn’t know why I was going. There were no discussions between my parents and myself. This became the norm for me, so I never stopped to question my life in that way.

A few days ago, whilst sifting through my medical notes, I came across a letter from a Consultant I’d been to see, 3 days before I left home to make sure that having Cerebral Palsy wouldn’t interfere with me being able to have children. Seeing the Specialist was a means of me being ‘signed off.’

From my memory of the conversation, the Specialist was bemused I was even there. He couldn’t understand why the question was being asked; my disability was mild. I keep having to remind myself that this is was and is very much my life.

Sadly, not only did I live in ignorance because my parents didn’t want to deal with my disability, they didn’t know or ask questions to at least try to understand my disability and this is a big deal for me. As my Cerebral Palsy blogs have shown, we find answers when we’re informed.

If my parents had taken the time to understand everything I now understand about my disability and my neurological impairments, there would have been no need for me to get signed off.

They chose not to know. When anyone does things for their own selfish gain, unless they come forward and apologise, there is very little to forgive. Sadly, I’ve come no further. My disability is as hidden now as it was all those years ago.

But on the back of my experiences my Diary is my platform. Through my blogs, I get to talk about my life, experiences, disability and more.