08 February 2009

Clare Louise Burzynski - part 3

Sorry if you all have been waiting in anticipation for the next episode of Clare Louise Burzynski :P I am a procrastinator, a forgetter, and can get distracted by doing other things and then all of a sudden the day is over! So sometimes, things don't get done for a while if they aren't of high priority (and hence why all through high school and university I seem to be doing assignments and study a week or even days before they're due!).


Obviously, after the accident there was a whole lot of learning for that little girl to go through. Learning new ways to do things that, as a 3 year old, I probably had only just managed to learn normally. Obviously getting used to wheeling around in a wheelchair was a major part of the learning curve. Not being able to squeeze past tight spaces. Not being able to go up stairs (which later in life turned into not being able to go to friends houses because they had stairs). Learning how to balance on just the back wheels (a.k.a. wheelies or mono's or whatever kids call them these days). Learning how to jump up and down small steps (now at 2 or 3 at a time, which can be a heart rate raising experience even as a 22 year old with 19 years of wheelchair experience).

(1. The wheelchair I had in hospital. 2. The first wheelchair I had out of hospital, funny, I have red wheels now too.)

Then came all the physio therapy. Stretching my legs this way and that. Building up my upper body strength to handle to new fact that I have to pretty much carry my lower half around with me. I spent countless hours and days at the children's hospital doing this test and that. But the main thing that I remember from all that physio is what we called the RGO. I honestly couldnt tell you what those letters mean, maybe someone out there could post a comment to remind me. But thats irrelevant right now. What it is, in laymens terms anyway, is this brace thing that you strap your legs into as well as your back. Its all joined up so that you can technically get up and walk around with crutches (without crutches you would just fall over and face plant the ground, trust me, it happend). You would pretty much put your weight to one side and swing a leg through. I guess its point was to make sure that the muscles in my legs would grow as my body grew through childhood. As well as to make sure they get all stretched out so they dont get tight and erg (wow thats an awesome medical term :P ).

(1. At home with the RGO, I've always been a bit of a poser. 2. In some hospital corridor. I almost look normal with the dress over the top of the RGO if it wasn't for the crutches.)

Obviously, the Doctors wanted me to be in this a few hours every day which becomes a bit tiresome for a kid, especially on a grumpy day. So you had to make it into some kind of game. I remember at some time there was this chart on the wall. I had to do certain things in my RGO and if I did them then I would get a gold star sticker. I can't remember now what the ultimate reward was but I do remember that chart being stuck on the kitchen wall. Sometimes I thought the RGO was kinda cool. I was taller than I was in a chair and could reach certain things like the kitchen sink, which my parents thought was cool as well because they were able to make me do the dishes or handwash my dolls clothes.

(1. Doing the dishes. 2. Cooking. 3. Putting my dolls clothes on the line.)

Oh man, now that I'm thinking back to those years and looking over all the photos, I was in that RGO pretty much my entire childhood. It was there when I was in Pre-School where it allowed me to wear the pretty purple swishy dress from the dress up box. It was there through Kindy and Grades 1 2 and 3 where they even bought a special desk so I could stand and do school work at the same time.

(1. The purple swish dress that I could only wear standing up. 2. The table I had in school.)

Like alot of things, things come to an end. It was probably a mixture of me not liking it any more (it makes me look "more disabled") and the fact that my legs were starting to grow at a slightly odd angle (more about that in a future 'episode') and made swinging my legs through in the RGO kinda hard. So there went the RGO and all the appointments associated with it. Oh, just a quick side note: to make a RGO, they needed to make a mold of your back/chest and legs and to do this they wrap you in heaps of plaster of paris, wait for it to dry and then cut you out of it. Those were interesting hospital vists!

If I wasn't in my wheelchair or the RGO, around the home I mostly crawled to where I wanted to go. Which meant stopping regularly to stop my pants from being dragged down to my ankles. This is when my creative mother invented the all in one play suits. Pretty much they were a top and pant combo, similar to that a convict or paramedic would wear, but with the early 1990's for children flare to it. Mum even made some in school colours in winter but as all kids strive to be or look cool, I would take my arms out of the top bit and tie the arm bits around my waist so it looks like I'm just wearing trakki daks with a jumper tied around my waist (obviously Im wearing a tshirt of some kind as well :P ).

(1. The All in One play suit, this must have been a clown edition. Ive read IT, yes it scares me too! 2. Me on the swing in another All in One. My mum was very creative, she made alot of clothes for me.)

If I wasn't crawling, I was using what I called my skooter board. This was where my dad became creative and inventive. It was basically a bigger version of a skate board which I could sit on and use my arms to get around. There were a few versions of these skooter boards. One had a seat with bigger back wheels that I could actually push instead of having my hands on the ground, but my favourite was a big red one with Spot (that cartoon dog) painted on it. So little Clare didn't have any problems at getting around the home :)

(Me on the Spot skooter having a 'run' around in the sprinklers on a hot day.)

Anyway that will do for now.. Will talk about school next time I think :) I can see this thing being longer than what I originally expected it to be.

Local league tonight. Woo!

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