On Friday night, there was a huge crash on the motorway not far from where we live. 7 people lost their lives and some were left with “life changing” injuries! A terrible tragedy that doesn’t bear thinking about. I am always saddened when I hear those words “life changing” injuries. I have, with Amber, spent many days in hospital with her over the years. The specialist hospital where we go is a renowned for its Neurology services, so I have seen at first-hand what “life changing” injuries can mean to young people. I remember seeing two boys over 18 months of admissions with Amber when she was younger, both had been in separate car crashes, and the impact that it has had on their lives was evident. Wheelchairs, feeding tubes, paralysis, brain-surgery, loss of speech, seizures etc etc. These boys were in hospital for around two years before they were allowed home. I cannot image what it must be like to be thrust into a world of disability like this, through accidents or tragedy, its heart breaking to contemplate the fragility of life, we really could be here today and gone tomorrow, and if we are not gone, then we could be left with in a truly “life changing” state.
Last year when Amber had her VNS fitted, we went to the same neurology hospital. I remember to this day seeing a photo of the boy in the next bed up on his wall. It was a beautiful photo, he was smiling holding a large fish, which I assume he had caught, except looking at the boy in the bed it didn’t look like the same boy. His parents came whooshing in, got him up, ready in his wheelchair, and took him off of for walk, he was unable to speak and unable to do anything for himself. I remember what a feisty and strong women his mother seem to be. I recently met this family at the place where we go for respite, and I sat with them at dinner. The boy’s mother is a feisty woman, not because it is in her nature, because after only two years of being thrown into this world of disability, through a car crash, she too knew that you have to shout get what you need, and that sometimes you have to even fight the medical establishment. The dynamics of her family were far from what they were before her son’s accidents, but she has stood up to this challenge with vigour, and honour, because of the love that she has for her son. I often contemplate how I would feel if Amber had been born without the challenges she has but developed them later on in her childhood like some of the people I know in “our” world of disability, would I still be the same strong person I am today?
Life is such a gift that we have all been given, we parents with children with special needs are lucky that these children chose us. For parents that have children or in fact any loved ones that have accidents where these “life changing” events occur, it has to be a fate! it is the only way that I can rationalise it. I feel privileged that in this world I have met the most amazing and dedicated parents, and they still manage to live their lives with everything that is thrown at them.