I was diagnosed when I was 2 with JRA, I had a 6 month flare and then went into remission until I was 10/12 (no one wrote it on the calendar). When it came roaring back into my life at that age I remember it was my knees that were the problem. Funny how I can't remember anything much from that time, but I can vividly remember looking at my knee as 3 people were holding me down to drain it. They had asked my mother to leave the room. Of course I loved needles as much as the average 10/12 year old.
As you can see things were done pretty differently while I was growing up with JRA, doctors were God, parents didn't have a whole lot of rights and not moving for fear of hurting ones joints was very much the practice. You can imagine my life was full of NO. I don't think it would have been so bad if I had been an only child but I have a healthy sister. We weren't very fond of each other as kids, she got to do everything because she was healthy and I got to sit by and watch as she did everything I wanted to do. No skateboarding, no roller skating, no water skiing, no water tubing...alright, now I'm just getting petty but you get the idea. A life full of "no" for a kid who already has JRA was a total drag. I promised myself that if I should ever be so lucky to have a child of my own that had health issues I would never say no...enter payback....
I have a nephew that's about 16 months younger than my daughter (13), let's call them Jack and Jill. Well, Jack has been interested in skydiving for quite some time, so has Jill. Since I'm not letting either of them jump out of a plane I thought I was good. Enter Joe (that's my husbands real name) and his wonderful ideas. "Melissa (yeah, my name), I found a place where the kids can go skydiving and they don't have to jump out of a plane." My first thought was "oh crap," he continued to tell me about the wind tunnel place where they raise you off of the floor about 4.5 feet in the air and the first chance to not say NO to Jill presents itself. Thanks Joe, NOT!
Against my better judgement I acquiesce and say fine (in my head I'm screaming NO and think of my clumsy child with the bum ankles trying to land without breaking anything). You see my daughter has Ehlers Danlos Syndrome, that's where your muscles don't have enough collagen and they stretch a lot further than they should. She's also is very clumsy like her mother (I gave her EDS)...she broke her ankle walking on the sidewalk. The chances of her landing on her feet, while jumping out the the tunnel in one piece are slim to none.
Let's jump ahead to jump day, I'm at home while this is happening waiting for the call to meet them in the ER. All of the sudden I hear the door open and my daughter walks in, in one piece. I ask her how it went and she told me that dad was mad at her. I asked why and she said that she didn't skydive (I knew she didn't, she was still able to ambulate), she went on to say that when she was watching the training video they talked about pain in your neck and shoulders and that skydiving may not be for you. She talked it over with the instructor and he said that it might dislocate both of her shoulders and then he went on and talked about another person who that had happened too. He also said she could come back when her muscles were stronger or she could get her money refunded (Jack got to fly for 2 minutes, little stinker).
Can I tell you how proud of her I was? By not telling her "no" for everything she has learned what she thinks is okay and what isn't. She is teaching herself what makes sense and what doesn't based on her limitations and how willing she is to feel lousy. That's quite impressive for a 13 year old. It's only slightly scary that her 45 year old father isn't that smart.
I'm so glad that I have chosen different for her, my parents did what they told them to do and kept me from doing much, I resented it like crazy. They never gave me a chance to learn what I could do and couldn't do which is why I still believe its okay to para-sail and want to zipline (just kidding, well I have para-sailed). I hope Jill will grow up figuring out what she likes and doesn't like not based on my rules but based on how much she is willing to deal with the consequences of her choices and that really thrills me for her.