Sunday, March 28, 2010

GETTING BACK INTO ROUTINE

22nd to 28th March 2010

This week has been pretty busy for me, mainly working on school projects and this week also was twelve months since my life was changed forever. On the bright side some very exciting developments have started to happen with my book.

Monday I spent many hours working on my Life Pathways and Social Futures task about how my school can embrace inclusion, freedom and respect for students with a disability. I feel really passionate and determined about this task and I think it is another way that I can make a difference to other people's lives. I think though I over did it because my eyes became very tired, blurry and fuzzy so I saw two things, double vision is what you call it. On that day I also made some delicious chocolate chip muffins for Nalani, Jarrett and Dad to have on their lunches, did my Mathletics, physiotherapy exercises, played up words and suduko. The mornings are cooler and I am finding that when you don't have much hair your head gets really cold easily and then the rest of your body does also.

After not having the best night sleep because I was woken several times with my right knee been stiff and painful, it was off to school on Tuesday morning. At school I had Science first and we learnt about the sense of sight, then I had English and we had to transfer comic language into written conversation sentences that made sense, then it was time for my favourite subject, Maths, we did some more work on fractions, we did addition, subtraction, multiplication and division of fractions on a worksheet. After taking some photographs for my Life Pathways and Social Futures task, we came home and we received telephone call from Rhiannon to say that my brace for my knee had arrived, so we went there straight away to have it fitted. It is a patella tracking support wrap-around design brace and it holds my kneecap where it should be and gives me support to walk a little more steadily and with more confidence. I played Upwords twice today, it is really great for spelling and helps improve my thinking. I had terrible pain in my scar where the fluid was drained out prior to my surgery, it was so painful that I had to take panadol to help ease the pain. In the afternoon we went to running training but we could not practise for Cross Country because a plastic part on the cross member arm had broken on my wheelchair, we think it could of been cracked from when we went to Sydney for my tests and when my wheelchair was put on the aeroplane, if you don't fold it up properly and force it, it could cause it to break. It had been stiff to fold and had been making clunking noisy and when we folded it up last Sunday it just snapped off it is under warranty so we should be able to get a replacement part but until then we have to be gentle with it. That night I read Juliet the Valentines Fairy to Mum before I went to sleep.

Wednesday 24th March was the anniversary of going to see the paediatrician then being rushed to Canberra Hospital for an MRI and receiving the devastating news that I had a brain tumour and would have to be rushed to Sydney that night. I was so upset today and I cried so hard that I felt so sick in my stomach and then I was dry retching. I remember I was so confused and frightened on this day twelve months ago and I did not know how difficult my journey was going to be. It is so funny how one day you can be at school with all your friends enjoying your life as an eleven year old and then in a matter of hours with one appointment your life is turned upside down. I tried to keep my mind busy by working on my Life Pathways and Social Futures task and it helped. I then thought about if I had not been given this journey how different my life would be now, it would be much better I am sure but then I would not have learnt what I have and experienced as much as I have so I have become a better person because of my journey. Do you think God gives only the best people the most difficult journey's in their lives? I think that he wanted me to travel this journey to become stronger and help other people and when he thinks my job is done he will take me to live with him, that could be a short time or it could be a long time away, he is the only one who knows. I think all my family were remembering what today was. Jarrett told me how much it had affected him and had made him feel so sad and it was really difficult to concentrate at school when we were so far away. Nalani told her friends what the day was and they were all really supportive towards her, she has really nice friends.

Thursday was back to school again, it also marked an important event from my journey and that was the day of my surgery to remove the tumour. Mum said her most prominent memory is of how they were told it would take five hours and I was in surgery for ten hours and then when the doctor came to see them after surgery, she was very upset because she had been unable to remove all of the tumour and how she had apologised and told them that I would not live to grow up, get married and have children, she was also unsure at the time how I would pull through the surgery and what damage could have been done. Here I am still here and even though there is damage, I am alive still. Anyway at school I had Australian Studies and the class were presenting speeches about life as a Convict, I was able to sit and listen although I was at the back of the class so it was quite difficult to hear most of what they were saying. I then had double mathematics and I worked on a problem of dividing three pies evenly between eleven people. If you work out that a circle is 360 degrees and when you divide a circle in four each quarter is 90 degrees after dividing that between eleven people you still have one quarter remaining so you had to divide that quarter by 11 and the answer when rounded off was 8 so I had divide the remaining quarter into portions of 8 degrees each. I then did one where you divided each of the three pies by eleven and you had to divide each pie into eleven pieces each been 33 degrees. It was tricky at first but once I understood what to do, it was simple.
We had running training in the afternoon and we were able to go around the oval three times because the replacement part for the wheelchair had arrived the day before and it now works like a dream. Today I walked with my knee brace on from the lounge chair to the front door which is about 8 metres, I needed Mum for support a couple of times but that was a huge achievement. Afterwards my knee was quite sore and swollen but I had made progress, I could only imagine what I could do if we had a level house to live in.

Friday I was feeling quite exhausted and drained I think it had just been a really huge week for me and a very emotional one. Mum and I went to the Library to borrow some books to work on my other project about an Australian Scientist. I worked more on my Life Pathways and Social Futures task and printed off pages to put it together. I decided to do it as a large booklet with large writing so it stood out and the pictures I took were all A4 size so they really showed what the obstacles are for people with disabilities at our school and it is amazing how many you can find when you are in the situation of having a disability. I also did my Mathletics and scored another 1000 points but I did not earn another bronze certificate because you can only get one a week, how disappointing! I watched the West Tigers play the Eels and was so excited when my team won and Benji Marshall was outstanding, he is my favourite player. My hearing today seemed really bad, I could not hear Mum very clearly when she was talking and usually I can fairly well, I also saw that my right eye is drooping again and my tongue is deviating to the left like it was before surgery and my scar was really painful again which is very annoying.

On Saturday I finished off my Life Pathways and Social Futures task all except taking one more photograph of what it is like in my classroom. I did some knitting and then we went to a Cross Country Race, I was hoping that we could enter it but they did not have a 1km run this time and the course was too bumpy for my wheelchair. Jarrett and Nalani ran in the 2.1km Junior Point Score race and Jarrett won in a time of 6:27:00 and Nalani came 20th in a time of 9:18:00 which was a personal best for her, there were about forty people in the race. Then Jarrett ran in the 4.2km race as a warm down and to pace for his coach who was racing in it. Jarrett came 11th which was unreal considering he was taking it easy. I rode the exercise bike for seven minutes in the afternoon, that is a record and I did some of my stretches but then I was in too much pain. I had a terrible shooting pain in my left hand between my fingers and then it transferred into my right hand and it was soooooooo painful I was in tears and did not know how or where to hold my hands. I had to take panadol and overnight it settled down but it was actually quite scary, not sure what caused it.

Today we went to running training and went for a walk around the AIS, they were setting up for the Lady GaGa concert, it was amazing all the equipment and props she has, they had to close off part of the car park to unload it all. The weather looks like it is going to change so my knee has been stiff and very painful today so walking has not been easy even with the brace. Tonight I am going to Church, it is Palm Sunday, Easter is a sad time but then it is full of hope, it is a little like my journey.

Now all the news on my book: There is a website that has been set up by the wonderful people at Focus Creative, this means that people can purchase my book online when it has been printed the website is www.dainere.com and it also has a link to my Blog so people can continue to follow my story which I hope lots of people will do because there is still so much more to tell. We are having a book launch in late April but the date has not been confirmed yet. I had to write a couple more quotes to go in the book, I also had to do a biography and a final thank you, it is all so amazing, I can hardly wait until everyone can read it. I do hope I can inspire people even though I am only young I feel my journey has made me so much older and wiser. Mum and I did a telephone interview for Canberra FM with Brooklynn and he was so nice, he was asking about my book and we were on the radio every half hour from 6am until 8.30am at the end of the news. They said that I may be the next best selling author, how exciting would that be and it would mean that I could see a dream come true of inspiring and helping others that is what Lance Armstrong has done. I was really nervous doing the interview but it was also fun and because it was about my book it was pretty easy to talk about.

This week is going to be exciting, I have a few appointments, my paediatrician appointment and my bone age x-ray and the most marvellous news is I am going to be a VIP guest at the football game, it is the Raiders verses the Tigers. I will let you know all about it in next weeks exciting entry. Happy Easter may you all be filled with happiness and hope during this special time.



7 comments:

Anonymous said...

Hello,

The purchase link on your website just takes you to Paypal. There's nowhere to purchase your book.

Carly Findlay said...

Hey there
I saw the link to your blog on Nova's website.
You write so well.
I wish you all the best with your journey - you are hopeful and inspirational.
Carly

Anonymous said...

Dear Dainere
It has been great catching up with your blog which is so full of exciting news, especially about your book. We have just got home from New Zealand where we thought of you a lot and how much you would have loved the things we saw there. However we have taken heaps of photos and will send some of the ones we know would be of interest to you as soon as we can.

We are so looking forward to your book and of course we will want to purchase a signed copy, maybe two.

How exciting for you to be a VIP guest at the footy and especially because your favourite team will be playing.

Have a wonderful Easter and we will talk to you soon. Keep up the good work in maths.

Lots of love
Nan and Pop xxxooo

Lisa Messenger said...

Dainere
Your journey is extremely inspiring. Congratulations on getting your book out. Paul Gordon told me about your incredible spirit so it is wonderful to have connected with your BLOG and seen for myself. You are a beautiful heartfelt writer.
Take care on this journey of yours. Much love.
Lisa Messenger www.themessengergroup.com.au

mjessop said...

Hey Dainere, it was wonderful to meet you today.
The story we shot will be on National Nine News at 6 PM. I also have the Footy Show interested in your story and they are going to mention you at the start of the show, before the first commercial break.My family wish you all their very best wishes and are looking forward to reading your book. Have a great day on Sunday as the TIGERS thrash the raiders. Thank you again and your family for making us so welcome in your home today. My thoughts are with you, all the best, mark the cameraman.

Anonymous said...

Hi Dainere,

You don't know me but my family and I have been following your journey since last year. I am Tess' sister in Canberra and I have been sending you so many positive thoughts since beginning to read your journal.

Your writing has been full of many profound thoughts - you have had to confront so many issues that other 11 and 12 year olds have not. You have confronted these issues with great patience and insight and I have found myself quietly cheering you on so many times.

Recently, we have all been so excited by the wonderful news of the imminent publication of your book. Messages and e-mails fly between all of us daily as we keep up with the next exciting piece of news. Now we are no longer quietly cheering - we are cheering out loud!!

Today, I have read the Canberra Times article about you (and was able to pick up the errors immediately....), heard the ABC radio interview, and just watched you on the TV news. I feel a great need to congratulate you on the wonderful way that you have handled these big events! My sister keeps telling me about your beautiful smile - and tonight I know exactly what she means!

Keep up your fantastic efforts on all fronts Dainere. Understand that even when you don't know it, there are so many people who are behind your courageous efforts and who are walking with you through the storm and towards that rainbow.

Lots of love,
Anna xxxx

Kerry said...

Dainere I hope you have a blast at the footy. You are so inspirational, brave and have such a beautiful spirit. Your courage just amazes me, it is a privalege to be reading your posts.
you enjoy your weekend darling...