Jon has Autism and is probably one of very few children who have gone through this massive life changing surgery.
I can still hear the voices of disapproval in my head and from outside. why bother? Jon is brilliant, clever and smart. Why not let him have the same opportunities as any other kid?
The struggle felt by him has been ten fold above anything else. a girl, slightly younger than him also had the exact same operation the same day as Jon. She is a non autistic bright and happy girl who was keen to sit up whilst still in Intensive care. Jon on the other hand was grumpy telling everyone from a loud voice he wanted to die. I, his flaking mother could do nothing else but feel helpless and guilty.
Jon’s scoliosis had been severe shortening his life to barely 30 years old if he had not gone through this ordeal. His double curvature had been enough to eventually crush his heart and lungs meaning the last few years of his short life would have been spent confined to a wheelchair.
Day two after husband surgery and back on the ward was a platform for Jon to feel more comfortable with the staff and doctors around him that he could shout and swear. Yet it was also on this day that he stood up from his bed. Got up on his feet and successfully transferred himself from bed to chair and back again. despite the tears and frustration felt by me over the last three days since his admission, I was clapping with delight at this big step towards recovery.
I sit at his bedside and watch him sleep after a wide awake night from all of us on the ward the night before.
It feels now it’s been worth the struggle with school, insurance company, hospital and family to get him here.