Thursday, August 5, 2010


4th and 5th August 2010

'The spirit within in you is a river that flows along and touches other people's lives along its journey' I hope that my determination and spirit of hope is continuing to touch the lives of everyone I meet. Some days I feel like I am letting everyone down when I am complaining about the pain I am experiencing but then I realise that I am allowed to be human and even in pain I always try to find a positive to provide a ray of sunshine even on the days that I am feeling low.

Speaking of pain, I just can not seem to be able to overcome it, no matter how determined or positive my attitude is. I long for some relief even if it is just enough to help me sleep throughout one night each week. I guess that is asking for a miracle though and also a little selfish of me. The last couple of nights I have frequently woke with what seems like pain that is as deep as the depths of the ocean, Mum does everything she can to help and says she wishes she was the one in pain not me. Perhaps when I return to Sydney in September something can be done to help me. Enough of doom and gloom, I have to my rainbow which I believe is out there somewhere just waiting for me to climb the mountains that have been put in my path.

Yesterday I had school, even though I was tired and my tiny body was thumping with that familiar pain, I had excitement in my heart because I had my electives. Before electives began though there was a meeting in the classroom with the SRC's who ask the class to put forward any ideas to that to their next meeting, ideas that came up were; a school touch football team for girls, a gridiron team for boys, questioning what has happened to the Government promise of computers for every child, a fundraiser for a girl in my class whose older sister has leukemia and an unusual idea of a tree swing. The class was extremely noisy during this time and I could not hear what was being said fortunately they were writing the suggestions on the whiteboard so at least I could read about what was going on. This is where my hearing aid does not work, when there is excessive classroom noise but that is not all the time, thank goodness.

It was then time for our first elective and mine is French, we learnt about regular 'er' verbs, looking for the ending and the stem of the word and then putting it into different tenses. Once I got into how it all worked I understood it more. We then were handed a worksheet to work on, Mum was helping me and the teacher came around to check it and Mum had forgotten that when Je is followed by a word starting with a vowel you drop the 'e' and it becomes J'. After an hour of French it was then time to go to Textiles which I am really enjoying, I was wondering what we would be doing as Mum pushed me in my wheelchair to the Textiles room. My teacher was away but we had a relief teacher who found out from the other students what we were doing. I had to make my cord for my sample calico bag first, that was done by tying the ends of nylon ribbon together and then using two pencils, one either end to twist it until it sprang back on itself making a lovely cord. We then started on the next task which was weaving, we used meat trays and made 1cm cuts along the top and then matching ones across the bottom, we threat wool through these fastening either end with sticky tape. I could then begin to weave in and out of the threads. I chose a rainbow colour wool because as I have said before I know that there is a rainbow somewhere out there waiting for me. Mum said I could bring my weaving home because I enjoyed it so much, I found that when my right hand got tired and sore, I then used my left hand. I actually found weaving very therapeutic and I surprised myself by finishing it all off last night. We had a meat tray from dinner, so I am going to do another one, I don't have my electives next week at school so I can work on that one at home and then the week after take them both back to the teacher.

I rested for a little when I came home because we were having some very special visitors, Luke, he is the photographer from Newcastle who came and took lovely photographs of our family, his wife Michelle and their gorgeous little one year old son Josiah. They spent a couple of hours with us talking about what we have all being doing, they even got to try my vanilla slice that I had made the day before and told me it was delicious. This is when I feel so blessed, through my journey I have not only had my marvellous family behind me supporting me but I have met so many new and extraordinary friends who I know will always be there for me.

Last night I found I was so exhausted and again in dreadful pain, I was hoping for a decent night sleep but, you guessed it, I did not sleep well, my entire night was so disrupted by pain this time my knee, ankle, foot and my hip gave me the most distress. I think I fell asleep properly at around 5am this morning and I slept until 7am but stayed in bed until 8am, it was fantastic that I did not have to go to school today because it meant I could take things slowly and also give my aching body a little more rest.

My hip is painful today and I feel all lopsided because of it, my right knee is devastating swollen, not to mention that right foot. I have tried to stand and do a little walking but it is impossible and just so terribly painful I can not bear it. I do my exercises every day to try to help it but the weight bearing ones I am unable to do, riding the exercise bike has not been possible either over the last few days as my knee is so sore and swollen. I have however done my upper body exercises as the other day when my shoulder clicked it seemed to go back into place, so I joyfully celebrate the fact that something has gone right and I have keenly worked on those exercises while I can.

While Mum was doing some housework, I read to Tinkerbelle and Theodore, a book that Nalani had borrowed as part of an English assignment she is doing on Children's Literature, it is a younger readers book called 'The Diary of a Killer Cat' it was a great book and wearing my hearing aid while I was reading made a difference for me because I could hear myself, I am finding that I can hear I am not pronouncing some of my sounds correctly, this is an effect from the tumour. After reading I worked on some Tangram Puzzles that Luke, Michelle and Josiah gave me, these are great for thinking skills. I played Upwords and then felt quite fatigued so asked Mum if I could lie on the lounge and rest. After resting for a while we watched Alice in Wonderland, it was very different to the original but I really enjoyed, I think I missed some parts of it because I nodded off as my eyes were heavy.

I received a letter in the mail today from Mr Seselja, he wrote to tell me that on 24th June during his adjournment debate speech in the Legislative Assembly Chamber he made mention of attending my book launch and about me. At the end he said that I was a very special young lady and he asked the Assembly to remember as they work in public life the lesson that I have taught us all about courage, humanity and compassion. I feel so honoured and humble that he said that about me. He also asked how I was going and told me to keep smiling. I think that is so marvellous that he did that, he must be such a busy man and he has taken the time to write and tell me that. I am going to write back to him and thank him, I think it is so important to acknowledge the kind words of others with your own. I think you can actually view everything he said if you look for the Hansard in the ACT Legislative Assembly for that date.

This afternoon is running training, it is an icy cold day today with the winds picking up this afternoon, the forecast temperature was only ten degrees so I think I will have to rug myself up to keep warm while we watch Jarrett at training. Tomorrow is school again, I have Integrated Studies and double Science, this has been a long week for me but I have been able to attend all the days I have set myself so that is an achievement.

Tess my extraordinary Starlight Wish Granter has to have an injection in her spine as she has been suffering with pain, please pray that the injection will give her some relief and that she does not have to have surgery. We keep in touch all the time through emails and telephone calls, she is another person that has made a difference to my life and if I had not been given this journey I would have never met her. Also could you please keep Olivia Lambert and her family in your prayers, she is a young girl from Canberra who has neuroblastoma and she has relapsed, the family are packing up and moving to Germany for her to have treatment that is not available here in Australia, they are trying to raise funds to support their trip she has a website it is

I will write again on Saturday, hoping that this wintry weather will be swept away and we will see a hint of Spring in the air in the not too distant future.

1 comment:

Anonymous said...

What a busy few days you have had! It is great that you have been able to achieve the goal you set yourself of attending school and you have really completed lots of activities.

French sounds tricky to me. I like the sound of Textiles, though! Glad you enjoyed the weaving - your teacher will be surprised to see how much you have done when you take it back.

Of course you are allowed to mention your pain - you are not letting anyone down! You certainly do provide a ray of sunshine EVERY day!! And I think you are a VERY unselfish person, inspirational, in fact.

It's good, no, WONDERFUL, that your hearing aid is making so much difference to both your reading and your hearing. I can imagine Theodore sitting still to listen to you read, but what about Tinkerbelle?? Does she sit still? I hope she likes to curl up on your lap or near you.

You are very persistent with your exercises.. well done! Your upper body strength will help with PE and shot putt throwing.

I will certainly remember your special Tess in my prayers. And Olivia, I will visit her website tonight.

Hoping for a restful, refreshing night followed by a warmer day with your longed for "hint of Spring in the air".

Thoughts and prayers for a wonderful young lady and her special family,