Tuesday, August 3, 2010


2nd and 3rd August 2010

Wow, winter was back with a vengeance yesterday, it was as if the air was a freezer and we were the ones being frozen. My bones suffered terribly and I was in agony as we headed off to school in my wheelchair. I was excited about going to school with my new hearing aid, hoping that it would be a whole new world of learning for me but the weather and the pain made wish I was inside our lovely warm home cuddling Ash, my special warming bear. My first lesson for the day was Chapel, it was fortunate that we beat the rush of students and were able to get into the Chapel quickly and not have to wait out in the icy cold. In Chapel we learnt about Moses and how he answered Gods call to help. When God told him he was to free the slaves he was not sure he could do it but God reassured him he would be by his side and told him all his strength was in his hand. We were told that we are not too young to feel that we are being asked to do something for God. This I know only too well, he has called upon me to travel this journey and through my journey my destiny is to help others. I have done this through writing my book, raising awareness about Brain Tumours and inspiring as many people that I meet as I can. God never said that any journey would be easy and I can tell you mine has to be one of the most difficult but I always try to face it with courage, strength and determination and that is all I can do. Many people would want to turn and hide from a journey like mine and although it is often really difficult for me to share my story, it is also the most important thing I can do in my life.

After Chapel I had PE which I love, although with the formidable weather I was not sure I would be able to keep warm enough. I have to take the long way around to get up onto the oval so the PE teacher suggested that Mum and I make a head start and meet the rest of the class up there. We were doing shot put, terrific because that was something that I knew I was capable of, even being in a wheelchair. My PE teacher always encourages me and it drives me to do my best, I used a soft ball just to get my technique and see what it was like throwing from a wheelchair. I can now share with you that it is definitely more complicated to throw from a wheelchair, normally when you throw a shot put you use the strength in your legs to help propel the shot put, in my case, sitting in a wheelchair, I did not have the benefit of my leg power, but I had the technique and I pushed that soft ball with all my strength, not that it is anywhere near what it used to be, but I pushed it as hard as I could and I was impressed with my effort. It was not as far as what everyone else could throw, but they are not in a wheelchair and I just feel so proud that I am out there giving it a go. Towards the end of the lesson, I was exhausted, who would think throwing a soft ball could take so much out of you. I went back to class tired but with extremely rosy cheeks from the cold most likely but also from the exhilaration of being out there doing my sport.

We then had Integrated Studies and I had to write what special qualities I thought I had inside an outline of a person, which I hesitantly say, looked like the outline of a victim from one of the crime shows on television. I looked through the different cards with the qualities on them and carefully chose which ones I think were me. I chose bravery, perseverance, hope, kindness, religiousness and spirituality and can love and be loved. I decorated my person and the teacher was going to get the rest of the class to write around the outside what qualities they thought I have. At school I found that my hearing aid worked extremely well, it was like heaven being able to hear the teachers instructions, however when the class became a little noisier all I could hear in my hearing aid was crackling and I was unable to hear the teacher just like without my hearing aid. I was a little disappointed by this but then remembered I was told that this could happen and I may have to have an FM transmitter to help make it clearer in this situation.

It was recess and I was so pleased to be heading home to the warmth and comfort of our home and a lovely hot cup of lipton tea. I also really needed to take a pain killer as I was feeling ill from my pain. My right hand throbbed, my right knee was dreadfully swollen and the pain was virtually unbearable, Mum put a tubular bandage on it to try to reduce the swelling as well as try to keep it warm and my right foot was red and swollen and I could not bear to put any pressure on it. I rested under my lovely warm pink, fluffy blanket with Theodore and then played a game of Up Words before having to return to school for the last two lessons of the day, double English. As we left the house I wanted to beg Mum not to take me, not only had the weather deteriorated dramatically, it had also started to rain although I am sure it was little pieces of ice that were falling on my umbrella. Once in the warmth of the classroom I felt a little more comfortable, we had to work on a reading contract for English, we have to gain a minimum of forty points through doing activities. I decided to start on a Word Search using vocabulary from my book The Giver. I went through the book and told Mum the words and she wrote them down, I chose them carefully as they had to reflect what the story is about also. I was relieved when it was time to go home because I had truly had enough, I was sore and I was tired, it had been a long day and it takes its toll on me.

In the evening I did some knitting but my hand just could not cope with it, so I had to reluctantly give up. I really miss being able to watch MasterChef on television but I watched Undercover Boss and thought that many bosses in the world should do that because I don't think many of them realise exactly how much work or how dedicated their workers are.

My night was restless and I worked out that I only achieved four hours sleep which means Mum would have had the same or less than me. Fortunately, I did not have school today, I seem to need that day in between to recover so I am able to function at school properly the next day. The winds ripped around the house, bending the trees so they almost looked like a person attempting to touch their toes. The sun appeared so I sat and let my aching bones soak up its warmth through the windows of our family room. When I felt up to it I made some vanilla slice, you use morning coffee biscuits, milk, cream and a vanilla pudding mixture. I have to leave it overnight to set and then I can cut it up tomorrow.

My knee was in so much pain, it felt like it was being crushed, it hurt to bend, it hurt to have it straight there was nothing that could be done to alleviate how it felt. To take my mind off it, I did some French homework, I have to concentrate so much on it, as it is not easy. I then played Up Words twice and Mum read two Shirley Barber books to me while I rested on the lounge under my pink, fluffy blanket. I love Shirley Barber books, they are probably more for younger children but the stories are so lovely and her illustrations are magical, they fill your mind with beautiful visions and make you feel like you are part of the story.

We had to pick Nalani up from the AIS as she assisted at the PSSA Athletics Carnival and then we went to the Accountant. He asked for some of my books to sell at his office because he thinks my book is extraordinary and my generosity of donating the proceeds from my book to the Brain Tumour Fund is so selfless. At home I now only have 59 books remaining so perhaps that reprint will be on the cards, that is as long as there is interest in it. Perhaps every school in Australia should have one, every hospital so children my age can have an understanding of the journey they could face and maybe more bookshops would like to have it. I saw that Jessica Watson now has her book out, she is another inspirational young Australian, of course in a very different way to me, we have both though had to be courageous and determined but I think she will sell many more copies of her book perhaps even become a best selling author, she will definitely also be nominated for Young Australian of the Year.

We had running training in the afternoon, I took my knitting to work on, I did some but then my hand became painful and I had to stop, so I watched the squad running. I talked to Mum and Nalani about all the fun times we used to have when we all walked or ran while Jarrett was doing his training, they were the good old days when cancer was not part of my life.

The winds have died down this evening and as I wearily type this, I wonder what tomorrow will bring, I have my electives at school, which I am looking forward to. Please know that I appreciate the many comments that people leave and I love to hear your stories of what is happening in your lives, I feel I have made so many new, unseen friends who I feel so close to through their support and encouragement, thank you for being part of my life.

'I think we should live our life as if everything is a miracle and then encourage others to see what beauty there is even in the smallest object around them'


Ash Ogilvie said...

glad that the bear is working well for you!
hope the cold isnt hurting you to much.

keep at it..


Ali Davies said...

Enjoying reading about your athletics. Good for you for not allowing your health to stop you finding a way to get stuck in and have a go.
I used to love athletics when I was at school (many years ago now!!!). Wasn't brilliant at it but always good to not get too caught up with having to be really good at stuff. I know it sounds cheesy but it truly is the taking part that counts, just doing the best you are able and having a good time doing it. Whether that is better or worse than anyone else is immaterial.
Reminds me of something a coach friend of mine said to me once:
"comparison is the killer of creativity"
When I ponder on that, it reminds me comparing ourself to others can sometimes get in the way of all sorts of possibility and opportunity.

Thinking of you and sending lots of good wishes to you and your family from Ireland x

mokkiepop said...

Dear Dainere, I just bought your book, it's colorful pages just drew me and made me buy it! I sat up last night till very late and could not stop reading. And as I am reading I am having a little laugh and a cry at the same time. You see my own daughter is in her own journey also with cancer (not a tumor though) but so many of your experiences - we have gone through the same type of issues and I can so relate! You have a wonderful spirit my dear and I as a mother, that am walking in the shoes with a child with (post) cancer, I want to salute your mother for the wonderful job she is doing! He it does make us much, much stronger people and you are so right that God does have a purpose for the journey he places on our way! Would love to follow your journey and would not mind a note from your mum if she wants too....
Hugs Laura and Idonette (or DODO as they call her at Canteen)

krisdyl said...

Hello Dainere
I walked into a book store awhile back and they had your book displayed and the cover caught my eye.The title and the colors were so beautiful. I read your book and got onto your blog and I tried numerous times to send you a message. But silly me hadn't entered all the information in correctly and none of the messages went through I was so frustrated as I admire your courage so much.
Anyway my daughter was visiting last night dropping off my grandkids and she got me into your blog yeah! I think you and your family are wonderful and strong and are always there for each other, I hope your pain gets more manageable so you can get a good nights sleep and how wonderful you can hear better now you have your super duper hearing aid.Keep smiling Dainere kindest wishes Susan xx