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’m 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.