Just couldn't stay away...

Hi All!

It's been some time since my last blog, but writing another one has never been far from my mind. I guess I just couldn't stay away...

So since August, my recovery from surgery has been progressing slowly but surely, and walking independantly doesn't seem like it's really that far away now. The move to Gippsland hasn't made things easy, and perhaps Venus Bay wasn't quite the right choice, but I am happy for the change because sometimes you just know when life's in need of a little spice.

It's definitely given me the change I was looking for and I am glad it has brought me closer to members of my family I haven't seen since I was 18. But it has it's downsides too. I miss my friends in Ararat, and sometimes, unbelievably, Ararat itself.

I really never thought I could miss somewhere like Ararat, or my hometown of Stawell for that matter, but I guess you can just never be sure just how somewhere you have lived all your life can worm its way into your heart. It's funny how as a teenager the only thing you want to do is leave the town and its complete and utter boredom-inducing small town crap behind, but then once you have, you miss all the little things that give that same boring town a certain charm.

It's been hard for me to be happy since living here, but I do love the picturesque character of Venus Bay and the people here are amazingly friendly and will go out of their way to be of some help to you. Just today, one of my neighbours offered to talk to our local councillor, in an attempt to make our lives here just a little easier.

As I sit here, John is fast asleep beside me and my beautiful dogs are curled up at the base of my chair. It's a bit of a bittersweet feeling to have two of them, as we only made our big move with one. We lost our beautiful boy, Padfoot, a week before we left Ararat in a horrible accident with a truck driver who was not following the road rules at a pedestrian crossing.

Our gorgeous boy Padfoot (right) on the day we got his new friend Pippa (left)

 Losing Padfoot broke our hearts, and left his best friend, our little girl Pippa completely lost. She didn't sleep for about a week. But as well as Venus Bay bringing a new start for us, it also brought a new start for Pippa, and after a hit and miss with one new puppy, whom we called Maia, we finally found Marli, a gorgeous kelpie X beagle who has become Pippa's greatest companion.

Marli on her first day with us

So I think what our move and Marli coming into our lives has taught me, is that out of every negative is born a positive. I miss Padfoot every day, but I wouldn't give Marli up for the world, because I know in some way, Padfoot has helped us find the one dog who would heal our Pippa girl and seeing her being her old self again makes me happy.

Our life here may not be the most practical, and we may not have much of a social life, but it has taught us both some valuable lessons, and it brought us Marli, so I think in the end, maybe a bad choice wasn't really the worst choice we could have made and now, I don't think we would change it. We definitely won't be here forever, but I think the decision to move was the right one in the end.

Until next time,

Cheers.

Hospital: A Night Time Perspective

Hi All,

Well, its almost one o'clock as I sit and type this in my hospital bed, sleep isn't necessarily something that comes easy in this place. I'm 21 in a children's hospital and I have a 2 year old down the hall from me, the cutest little blonde boy, and hearing him cry just breaks every inch of my heart.

He has a long journey left coming to this hospital, as do so many of the others, but now as mine is showing more and more signs of coming to an end, I can really have a greater appreciation of what spending the childhood years either always here or coming back and forth, can mean to so many of Victoria, Australia and the world's youth.

The night before my surgery, my amazing fiancé and I spent the night in the CBP (Care by Parent) unit and we met an eleven year old girl with Cerebral Palsy who'd come all the way from Tassie with her parents, just to take advantage of the expertise and care that the Royal Children's Hospital has to offer. That was pretty amazing to me, as I know that there are Children's hospitals in all states, but there was something about our Victorian hospital that made such a trip the right choice.

I'm having my difficulties getting through this surgery and remaining positive, which I guess is natural, in the face of such a challenge, but today the little boy I spoke of earlier came right into my room and smiled at me without a care in the world, even though it was obvious he's having a tough time. It was such raw innocence and happiness that although, as an adult, it breaks your heart, because you are aware of the true risks, there's something about it that you just have to smile back at, which is probably why I can't wait to have kids, they're so life affirming, and strengthening.

It’s like a pure radiation of all the beautiful things in the world come from its smallest people. This hospital has given me a lot to appreciate, and it’s the things the people here have done for me that will allow life itself to give me even more to appreciate in the future. I have the most incredible partner in the world right here beside me to have all those experiences with me, as well as people who love me, scars or otherwise. I'm pretty lucky really, and I know in the next few weeks there'll be times when I don't feel like I am, but for all who read this, deep down I know I am, and I love everyone who helped me realise it.

Right now though? I'm going to go and continue this difficult journey, for my sake. But keep all those tiny, and not so tiny, children who don't have my awareness of the difficulties they face in your hearts. Remember, this hospital is not only working to make a better future for those kids, but for our world, and only those with our awareness and will can help them do that.   

Peace =)

Its The Distance, Doctor..

Hey All,

So, right now, I’m sitting here listening and watching in amazement as one of our pet rats, Ben, does his little power run on the wheel in their cage (rather unnatural for a rat, I swear he has a fitness regime, maybe I could make him his own fitness DVD… haha) and my lovely fiancé is fast asleep in the bed behind me, thankfully… as while he is sleeping his abdominal pain is giving him no trouble. Bubbles however doesn’t seem to have picked up on Ben’s little habit, so he’s a bit of a chubba.

I’m so glad to be able to kick back and let the rats entertain me after our busy couple of days in Melbourne. I had two appointments at the Royal Children’s Hospital in preparation for my big operation in August. I went to the Hugh Williamson Gait Laboratory, and had a CT scan today, but those two things are only the beginning of the fun times I’ve had at RCH over the past 20 odd years.

Let me start with the Hugh Williamson Gait Laboratory, (for anyone who doesn’t know what Gait means, it refers to the movement your legs make when walking). I have had at least three different types of tests there before. There’s The Oxygen Test: Which is used to determine how much oxygen a physically disabled child (or a child with Cerebral Palsy, in my case) will inhale and exhale whilst walking over a certain distance (just for anyone interested, when I last had this test, my oxygen levels were three times higher than an able bodied person), The Bubble Stick Test (that’s my name for it, not very scientific) which is where they put little sticks with reflective balls on the ends of them at different points of your leg and hip bones and on the base and then using special technology take video that looks like a join the dots picture on a grid of the positions your bones are in when you walk. Then of course, there is what I call The Catwalk test, which is where they take standard video footage of you walking up and down a grey line in the middle of the room. So they’re pretty simple tests really, but at the same time, they’re very tiring and even, to be honest, a little embarrassing. I say embarrassing because in the gait lab, you have to wear shorts and a singlet top, both of which get rolled up, and I’m not at all comfortable feeling that exposed. In my appointments at the Lab, they also do a series of stretches and extensions, to see how my muscles are coping… but that’s the Lab in a nutshell pretty much. 

I don’t think I need to touch on X-Rays and CT Scans, because I’m pretty sure everyone already knows what they are. The only thing I will say is, I would shudder to think just how much radiation I’ve been directly exposed to throughout my time at the Children’s. I’ve also had blood tests, I’ve had Botox injections (yes you read right) Botox is a muscle relaxant, so it has its medical purposes too, as well as its cosmetic ones and it has been of huge benefit to me.

I have also had to pay regular visits to the orthotics and prosthetics department, as up until about 4 years ago I had to wear orthotics. They started at the end my toes, ran under the foot and up the back of my leg until it was just under my knee, these had to be done up with Velcro straps and especially long socks had to be worn. The wearing in process involved in wearing this orthotic is much like a new pair of shoes, only I found it to be a tad more painful than that (and I still have the scars and calluses to prove it). My first ever pair was so small, the foot was about an inch long and the leg was about 3 inches high.

Throughout the 20 years or so that I have visited the Children’s there has been specialist visits, (my specialist being one Professor H. Kerr Graham, the leader in his field. Without that man, I don’t know where I would be, but I know for sure it wouldn’t be good), long uneventful waits to get a plaster cast or orthotics, x-rays or CT scans and long periods of time where I was not allowed to eat or drink. Not to mention, that because we lived 3 hours away any visit to the hospital, regardless of what appointments we had, was a very long, very tiring day. I feel like I know the ins and outs of that hospital like the back of my hand, probably like most children who have to put up with the Children’s as a permanent fixture in their 18 year childhood, and for some, even longer. I’ve stayed there, I’ve played there, and I’ve laughed, cried and screamed there, I’ve turned up my nose to food there, vomited there, and hurt there… But I also know one very important thing, as I sit here and type this feeling that all too familiar pain in my muscles and knowing that I have the circles around my kneecaps that are drawn there to make them more identifiable in video, I know that without the Children’s, my life could have been very different, and without a doubt a lot more painful and frustrating. So I have a lot to thank them for and I will continue to thank them for the rest of my life.

"...Knowing I have the circles on my knees.."

Please guys, next time Easter rolls around and the RCH Good Friday Appeal is on the telly and in the fire trucks around town, give generously. Kids all over Victoria, Australia and even the world will thank you for it, for the rest of their lives. Just like me.

Cheers.

A Literary Power... Literally.

Hey all,

So, I guess by now you would've guessed, from the title, that I don't have much to say. Oh the joys of writers block...

So I have had a few attempts to start this book that I have aspired to since the age of twelve, none of which have any success of any note. I have a reputation in my family of having a way with words. I can write just about anything, I've written songs, poems, short stories, minor novels, obituaries and whatever else you can possibly think of. But no matter what I've written.. I just can't seem to get something written that would classify as a book, at least not one that someone else actually likes.

So after many failed attempts... stories that have great starts but nowhere to take the story, stories that would (apparently) only ever be found in those seedy little book stores that sell the types of books that should have a rating of M or higher, or stories that are so boring to me that I don't bother to take them anywhere... I have taken to carrying a notepad with me to write down the tidbits I gain from my powers of observation. Or if I don't have my notepad, my phone is quickly whipped out of my pocket and I use my phone's office app to type what I'm thinking in Word.

Now, so far this seems to be working pretty well, but throughout this experience, I'm beginning to realise why so many writers are on goverment payments. Its not exactly easy to be a serious writer when its only a part-time pursuit. Once you put down your project and go off to do something else, you've lost your train of thought, and its almost impossible to keep the story going, unless of course you make a habit of having writing materials with you twenty-four seven.

So here is the cause of my dilemma, I know writing is not a stable career that generates a constant income, but its something that I've always taken very very seriously. Most of the time, this was a source of much conflict with members of my family, especially my parents. They didn't seem to think that I should aspire to such volatile career goals, even if I did have a certain amount of talent or enjoyment in experiencing it. 

I do believe that I could make a go of being an author/writer, but there is one small thing, or perhaps a rather big thing, holding me back. I'm too much of a free spirit. Now, this may not seem like it's a problem, but to really make a career out of writing, you have to be willing to pick up the little bits and pieces, whether it be newspaper articles or some sort of journalistic pursuits. But I have never been able to do this, I don't believe in having my writing abilities restrained to the guidelines of other people, and it's a well known fact that that is the sort of writing expected from companies who will pay you for writing that isn't a novel.

I like to let it flow, quite often I'll close my eyes and let the words in my head connect with the fingers on my keyboard (this sometimes being where those seedy little bookshop novels come from) What can I say? I think writing tends to turn out bigger and better that way. It makes it easier for readers to connect to on an emotional level. I tend to believe, that directing your stories at a particular audience means connecting and writing about the things they experience in everyday life. That small bit of reality in creativity, can sometimes mean the difference between success and failure with a particular audience. I think some examples of this would include two of my favourite drama novels: Deenie by Judy Blume and Looking For Alibrandi or Saving Francesca or On The Jellicoe Road all written by Melina Marchetta. 

But then you have your Harry Potters and Twilights, which have no element of reality within their stories. But I love these books too. My personal reasons for loving these books is pretty simple: they came out during my teenage years, which were full of turmoil, my battles with depression and my past quite often being the norm. I liked the escape from reality that thy gave me, when I felt as though all I needed was a break. They were a much needed 'therapy' I guess you could say. And I love those books for that. I find it fitting that the last movies for both of those series'of books are coming out now, closing the era of these books, as I begin my adult life and my teenage turmoil becomes a thing of the past. 

But it was back when I felt I needed help or a dose of confidence and strength, or when I feel that way now, that I reach for my favourite, reality based novels. As those books have lessons or attitudes throughout them that allow me to get my much needed confidence boost and give me back my zest for life and my desire to acheive and accomplish. I sometimes think I wouldn't make it through life without them.

So, even writing this long and probably boring blog has helped me to gain some understanding of what sort of novel my book should turn out to be. I almost feel as if maybe, I might be able to get something out now, something that brings the best of both of my worlds. The adult world, that more often than not brings with it the cold hard dose of reality and my teenage world, the need to escape, the need to just express myself and develop my inner imagination. I know that books have been a huge part of my life, even if my reading tastes have become slightly superficial these days (my current read is Kardashian Konfidential, the autobiography written and put together by the three most famous Kardashians: Kourtney, Kim and Khloe) I think they still are important and probably always will be.

Having parents who weren't big communicators, but people who were big on intellect and talent, I've learnt most of what I know comes from the broad variety of books that I read. I'm a kid who was reading Lord Of The Rings and authors like James Courtney and Charlotte Bronte, when I really should have still been stuck in books like The Babysitters Club and Goosebumps. But that's always been who I am. I'm still told to this day that I'm someone 30 years my senior most of the time. But I always say, and I'm gonna say it again.

NEVER underestimate the power of literature.

It is what you read when you don't have to that determines what you will be when you can't help it. ~Oscar Wilde

See you next time!

A New Perspective

Hi all,

So its been seven months since my last blog, and I'm finding it amazing just how much has changed in that time. Six months and 13 days ago I met an amazing person, my fiance John. Now this relationship was met with a lot of criticism when it first began, but I am a firm believer of following my heart. Which is something that I chose to do in this situation. And I'll tell you what, I'll never look back.

When my last relationship ended, I felt a huge weight lift off my shoulders and I have done things, with the support of John, that I never thought I would. I'm now going after my goals in a way that I have never had the motivation to do before. I do believe I owe this new found ambition to the life I have with John, because my happiness makes me feel as though I have no pressure to succeed.

Now do not get me wrong, success is great, but it feels a lot better when you acheive it under your own steam... in my experience anyway. Its often said that if you surround yourself with the right people, it will direct your life down a positive path.. but I never really believed just how true this could be until John came into my life. Which is why I have now removed any negative influences from my life and kept only the positive ones, which in turn, makes me a positively motivated person. 

Really if I'm honest with myself I have no idea if this will make any sense to anyone, as sometimes when I write, I don't give a lot of thought to what I write, quite often I just let my fingers on the keyboard channel my brain and go for their lives, and more often than not, doing that leads me to some of my best work.

On that note, I will leave you with one last thought. If the people in your life play a big part in your life. Who will motivate you to acheive something tomorrow?

'The most important thing to ask on the job is not "what am I getting?" The most important thing to ask is "What am I becoming?"'

Cheers. :)

Cerebral Palsy - The physical disability determining the lives of so many Adults and Children.

Hey all,

Ever since I can remember, I have lived and contended with the physical disability Cerebral Palsy, and I have met, at the very least, six other people with the disability. I've always found it sad however the level of ignorance around such a disability and have also been a first hand recipient of that ignorance my entire life.

There are two hugely common questions I have heard over my lifetime when it comes to CP and I hope to answer both of those right here.

Question 1.

How do we gain an understanding of CP when we don't even know what it is?

Research is always good, try googling Cerebral Palsy and see what comes up. But the simple answer is to say this: Cerebral Palsy is a physical disability caused by damage to the brain, usually due to lack of oxygen to a baby during birth or a head injury soon after birth. It affects the ability for the nerve systems in the body to send signals to the arms and legs, especially involving movement, hence why most CP sufferers use wheelchairs, frames or walking sticks. There are many different ways that CP affects people, it can affect just one side of the body, both arms, both legs or all four limbs. In the more severe cases it also affects speech capabilities.

If you want me to expand on this just ask me....


Question 2

Is there a cure for Cerebral Palsy?

Again there's a simple answer, which is no. But the more complicated answer is this: There is a treatment that can be used from birth to retrain a childs brain circuits to send messages to more accurate places, and whilst this is not a cure, it is an early intervention that can make such a huge difference to a child's future experience of Cerebral Palsy.

Another early intervention is Botox, yes you read right, Botox. The world's most lethal poison has been used in cosmetic surgery to loosen the face muscles to remove wrinkles and so, it has a similar role in the medical world. It is injected into the leg muscles of children with CP to loosen the spasticity in the muscles in order to relax them and make the process of walking more comfortable and slightly easier for the child. I myself was one of the trial subjects for this treatment 16 years ago. 

But as for a full and complete cure, we then look to Stem Cell Treatment, a treatment which has not been legalised in Australia yet as our government believes that more research is needed to allow the controversial issue. An adult with CP, such as myself, would have to travel to India in order to receive this treatment at this point in time.


In closing.....

So maybe I have answered those questions, maybe I haven't. But just remember, every 15 hours a child is born with Cerebral Palsy. But CP does not present itself until an affected child reaches 18 months of age, which is why it is so vital to train a child's brain from birth, as by the time CP presents itself it may be too late to retrain the brain and the damage will most likely be done. So please, raise awareness of this oh so common disability and help us out in finding and researching a viable cure.

Go to http://www.cpfoundation.com.au/ and make a donation today!

Peace guys. :)

Family Connections

Hey everyone!

When I left you last I issued you with a challenge, to think positive, and endorsed this message with one of my favourite quotes "Never let the fear of striking out keep you from playing the game." So, tell me, how did you go with that? Not always so easy huh?? Yeah I know how you feel, I haven't ever and probably never will be good at thinking positively, but I have learnt and known the benefits of it.

So where does my attitude come from? How can I possibly think positively when there is absolutely nothing in my life that can prove the benefits of that to me? The answer is: My family. I know you're thinking, oh everyone says that, that their families are the reason they are who they are, but for me, it is the absolute truth.

Growing up as a ward of the state and a foster child, my family has come to mean something entirely different to me than the rather conventional view that your family are your biological relatives, and no one else can possibly fulfill that role. Even though, I may have contradicted the opinion I am about to present to you at rough times in my life, there is nothing that will ever manage to change the view of family that has almost become second nature to me.

There was always a lot of holes in my life that my biological mother and father could never quite manage to fill. From the age of 6 months onwards, I spent majority of the time away from my two young parents, and although I know I saw them both quite a lot, it didn't take long for me to form the bond of mother and child with my foster mum and in turn, lose that bond with my own mother. And sadly, unlike my biological father and I with our father-daughter bond, my mother and I never managed to regain that bond.

I have spent my whole life feeling as though I would never quite fit in anywhere and I shouldn't have to say that this caused a lot of bitterness and horrible feelings in my life. If I went to my mother's house, I never felt quite right, and the same with my father's house. I didn't even really feel right living with my foster parents, I was always completely different to the people I spent time around, and I started to feel as though flying solo in life was the best way for me to go.

But it always used to surprise me, and often still does, how willing complete strangers were, to be the people who filled those holes for me, I found myself confiding in people who spent time around me, such as my child care workers or my teachers and I believe I felt more at home, with people who hardly knew me, than I did with my own family. I remember the only place I ever felt like I was part of something was at school. Which is just slightly ironic, given that in my early years of school not many of my peers took the time to get to know me, but those who did are still great friends of mine, as good a friend to me at the age of 20 as they were at the age of 5.

Family to me now are those who will be there for you, will support you through anything and are always there to talk things throw no matter what time of the night or day. They hold you when you cry and come running when you call, they laugh with you, smile with you, fail and succeed with you. They are the people who love you no matter who you are or what you do, and they are the people who will take every step through life with you.

So I say this now, when you feel as though you have no family, think of the people who would do all those things for you and with you, and you have your family right there in front of you without even having to try.

Interesting thought isn't it? Yeah. I thought so too. So who are your family now? Think about it, look around you and see who is still standing there waiting for the moments when you need them. Are they who you thought you were? Remember, smile and the whole world smiles with you.

Bye all!

Kirsten  :)