I find it difficult to believe that I was kept in the dark for 46 years, not knowing I had Cerebral Palsy. I compare my 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 I went to the hospital every year for 15 years and didn’t know why I was going. There were no discussions. Because it was the norm, I never stopped to question my life in that way.
A few days ago, whilst sifting through some medical notes, I came across a letter from a Consultant I’d been to see 3 days prior to getting married, to make sure that having a disability I didn’t know I had, wouldn’t interfere with me having children. Seeing the Specialist was a means of me being ‘signed off.’
From my memory of the consultation, 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 was, and is very much my life.
Not only did I live in ignorance because my parents didn’t want to deal with my disability, they didn’t ask questions to at least try to understand my disability and this is a big deal for me. As my Cerebral Palsy blogs show, we find answers when we’re informed.
If my parents had taken the time to understand everything I now understand about my disability, including my neurological impairments, there would have been no need to get me signed off. When we do something for our own selfish gain, there is very little to forgive.
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 talk about my experiences, my disability, my life and more.