I am a mummy but I have been a very ill child all my life to date. I have had severe Juvenile arthritis which is not like the old biddy type of arthritis, it is where the immune system attacks every thing within a body from joints to ,on occasions even has a go at , the odd organ! Over night a child can stand one day and the next day their knee be completely under attack and can not stand. Then because they can not stand they can not walk and then muscles waste quickly in us and eventually other joints go and we either have major surgery or intensive rehab to try get us up on our feet again for the time being. This is what I have lived with and still do but it is nothing compared to the anxiety my parents must have felt every time they kissed me goodbye for surgery from 5 years old to my recent operation three weeks ago mum was there, trying to smile.
The strength my parents have shown, now I am a mother, is just super human fantastic. They never showed their fears to me in hospital throughout painful tests or Physio and surgery. They shouted at me every day to walk, walk through pain, keep going, gave me Lego to play with and a keyboard to keep my hands moving just so they didn't stop working. In hospital whilst other kids were brought in cuddly toys my parents brought in homework and Letts revise chemistry or Maths hahaha, any thing to keep the very thing not attacked by arthritis doing well! The injections they gave me every week, despite my tears as a little girl they kept it up hoping eventually it would help me and it often did.
The hours and hours of travelling to Great Ormand Street from Scotland they spent, to ensure I saw the specialists, the juggling of my well siblings, if one was away with me the other parent dealt with the other three at home and ensured they had fun at weekends and were doing well at school, taking them to scouts and brownies etc. Despite their worry they carried on as normal, they spent hours fighting to get my hydrotherapy at our local hospital having to eventually demand it from a Cheif Exec, spent hours on phones to hospitals trying to chase up blood test results to know if they could cut my steroids down by a milligram etc, hours trying to deal with a benefit system that I have to say functioned better back then but still sent one round the houses, fighting to get loo raises or a light buggy rather than heavy wheelchair so mum could get me out with my siblings.
Above all I want to say how I know so many of you go through all this today, you all know what I am talking about and I want to say on behalf of all us ill children, thank you, you may think we are children and we are not aware of what you are going through but behind your smiles and us smiling back to keep you guys happy we know what you are doing for us, how hard you are trying and how hard it all is and we thank you so much and if your child grows up and surprises you as my parents were, I got my degree, married and now have a healthy 17 month old child, your child will especially be thankful and understanding and empathic about what you guys go through. My son maybe having to play on his mummy's bed at the moment because I am in plaster and not allowed to move but we have fun reading books, learning French and Oh God I am turning into my mum haha well hopefully that means my sons life will be great too :)
Thank you parents x
Carrie
My blog disabledpositiveparent.blogspot.co.uk/