I thought I would blog about my teen and young adult life, I am sat beside by baby boy and I can not imagine the pain and worry that must exist in parents of any ill child. However I can offer how my parents delt with having a physically ill child and three exceptionally healthy other children.
When I was a young child, at primary school, I was very popular. I think because I was happily doing what other girls in my class could do, playing with Sindy dolls, looking at my array of wind up pencil sharpeners walk around the class room. My parents always promoted normality, even if I was very ill, I always went to school! They would hold big birthday parties for all of us, mine were planned to the Nth degree as to what games we could all play, a great game for arthritic children is Musical Statues, something arthritic children are very apt at is freezing on the spot! My parents always encouraged all of us to invite friends over for tea because they always felt those children that never had others over for tea were always the ones left out when it came to invites for them. I was forever going over to other friends homes for tea and they to our house.
I was only ever around other arthritic children when I spent time in hospital, I must admit I found many of the children were a bit wrapped in cotton wool and constantly crying, neither of which I was. I did meet one of my dearest friends on ward. She now works for the UN as a multi ligual interpretor. I am so proud of her, her parents are exceptionally proud but boy I bet they were anxious every time she decided to take herself of to a Third world African country to volunteer during her holidays! She even had to go to British Embassys to get her medication!
She and I were a rather naughty combination on the ward, I point the finger of blame at her hehe. She would wake me at night when our parents had gone back to their rooms. I had learnt to undo all my leg splints and hand splints as I had had arthritis for a lot more years than she did. So she would ask me to come over and help her get her leg splints off, I did so thinking she was a bigger girl and must know what she was doing (I think we are only a year apart!). I then crept back to my bed and put my splints back on badly. The nurses cottoned on to what we were up to by the various piles of splints either removed deliberately or because they had fallen off! We ended up with good behaviour charts! Outrageous! I had never stepped out of line with my parents, school and never had behaviour charts! She was the only friend I had who understood, who we could joke about moving slowly with one another etc. She still is the only one friend I know who really understands apart from my husband. My parents have a parental view of me, they don't want me to push myself too much, even now with my son they ask "Why do you want to be doing more than being a mother?", they mean well, they are scared I will pull myself into hospital again but I have a brain and I have a desire to help others, I can't just sit playing and reading with my son all day without anything else, my mother couldn't just sit around and I learnt well from her.
In my early teens I found life difficult. I was huge because of steroid treatment, I must have been a size 16, couldn't walk, callipers all over my legs. I felt I looked different, I felt embarrassed of myself and I longed for new knees so I could get rid of the callipers and start walking and not being dependant on anyone to get around and even onto the toilet. I continued mainstream education at all times. When in hospital,all the other children I spent time with on the ward, got fluffy toys and pretty presents, I got Lets revise Biology, Maths and English guides! Around this time my brothers and sister were my real friends. I would spend hours playing with them and I still am so glad I was one of four.The only aspect of my siblings that I find hard to deal with today, is they were shielded a lot from my illness. I don't think they really understood some aspects of being a bit wonky. My mother has to make me dresses because I am 4ft 11 and have a very curved spine, I can't find dresses or tops that do not show that off. She makes dresses that hang from the shoulders and have an empire line which hides my curve and so I look like a normal, petite woman. My sister goes bonkers when I get dresses made for me, she wants some made for her, I can see things from her point of view completely and it is almost cruel on her that she doesn't understand why these things are done for me and not her.I think my parents were right to not bombard my siblings with tales of difference,illness that might have scared them. Both my mother and father tried hard to set up a normal family life where we all just got on and didn't dwell on hospital visits,my parents never spoke of my visits in front of my brothers and sister. The poor people had to drive hours and hours to get the specialist treatment for me, they did a seven hour round trip in a day and still took every one to the park the next day! I can see that when normality is so important when someone is ill in the family, I would never do any thing different to my mother and father, I think parents of an ill child have some super human inner strength, they go to the ends of the earth for every member of their child, drive miles and miles, watch their ill child go through painful treatment and still manage to laugh and love every one.
I ended up doing my A-levels a year early. This was not great as a child, a great thing for parents to feel proud off, awful as the baby of the group and add on top of that my size, my wheelchair ..oh god! I would listen to my fellow students reg ail their clubbing antics on a Monday morning, where you could buy great make up and I felt different. I still had friends but they were always the slightly odd ones. I guess these students befriended me because they felt socially different etc and actually I found them hard work at times as I pride myself on being good socially. Finally I got replaced knees. That day was like the day when you pass your driving test,graduate or get engaged. I was so happy. I underwent an 8 hour operation as they did both knees to save me hassle or more time of school, I think it would have been a 6 hour op but the surgeons decided they needed a good lunch break,can't blame them though! The rehabilitation was hard, I hadn't walked for years and I spent days between parallel bars and Physios motivating me like a parent does when their child is taking their first steps. I spent months in hospital trying to get muscles back, eventually I took some steps on walking sticks, I felt very proud. My father, a very kindly man, was the only one who shouted at me to try and walk without the sticks. I threw them away angry at my father, you know what I walked, still think he was rude though! I walked, walked and walked, I was so excited. My life was changing! I shed all my weight and went to a size 8. I met friends who went out! I could talk about make up they had in "Boots" because for the first time in my life I could take myself of around there. I booked tickets to see "Wet Wet Wet" and we got into the disabled area at the front of the stadium and I stood most of the time and danced.I learnt to drive and gosh did that open doors to me. Around 17 I went into remission, Juvenile arthritis does that, it can disappear as quickly as it came and no one really knows why.
I will leave it at that for now,I don't want to make blogs too lengthy. I will be adding more about growing up with arthritis- The Uni years etc later. I am starting to hear "The Wonder Years" music playing, what a fab series that was about growing up.
I can not imagine what my parents went through, the inner strength they have stuns me. I can not even pretend to understand what they felt, or how any other parent with an ill child feels, I can not imagine how horrendous it must be for those with terminally ill children.
All those parents who spend years taking their child in and out of hospital and still hold it together for their other children and still manage to laugh and love and try to have "normal days", I just want to say on behalf of all of us "ill children" we do appreciate it, even as a very young child you are aware of how your parents are feeling.I was more worried for my mother when I was 7 and having my first operation than I was about me. I remember I kept checking to see if she looked worried,fortunately my mother is a tough lady and we just got on and smiled, played board games together and passed the time away happily, I appreciate that inside she maybe wasn't feeling so tough but she didn't portray that to me and actually that made me feel safe and strong too. To all parents and all children, young adults or even older adults like me in their 30s keep smiling, keep being strong and good times do come, they honestly do.