Friday, February 18, 2011


12th to 18th February 2011

'It is important to write from the heart, let your words flow, share dreams and hope because doing this is a beautiful gift to all'.

My weekend was quiet because I had had such a busy and tiring week with school returning for a new year.  I worked on homework, covered books and enjoyed been creative with title pages.  We went to the AIS to see Jarrett run the 1500m Championships, he now runs in the U18's so runs against people who are at least a year older than him.  He ran exceptionally well and in a close race that saw him and another competitor take the lead at different occasions throughout the race, he came second only by milliseconds.  I was so proud of him and he was always happy with the result, you see Jarrett is not the type of person who has to always win, he is just always out there doing his best.

I experienced pain in my lower back over the weekend and it has continued throughout the entire week, it has made it difficult for me to do all my physiotherapy exercises, been unable to bend forward or backward and woken me during the night because it has been catching.  I was so relieved today to be having physiotherapy, Rhiannon found I was extremely tight , she loosened it off, put soothing heat on it and gave me some exercises to do to help it.  I honestly don't know what I would do without her, she is always there to help with all the new issues that arise.

Now to school, it was enjoyable because we are learning some fascinating things and I get to spend time with my friends.  However, I am finding school so exhausting, the days seem so long compared to what I am used to from last year and some of the work although interesting is so very challenging for me.  Something I have found  is that when I am copying from the board or reading from paper my eyes begin to flicker, that is my nystagmus, the longer I have to look the more they flicker, I think they flicker as fast as Jarrett can run.  With the flickering I am also finding that my vision becomes blurry and I am unable to see. As you can imagine this is quite frustrating when much of the work you do at school is either from the board or from printed handouts.

In English we are learning about poetry and reading the novel Holes.  We have looked at shape poetry which I really love, I wrote one about kittens in the shape of a cat and then did one about the sun which took the shape of the sun.  We have moved on and are looking at puzzle poetry by E E Cummings, it is quite unusual and very imaginative.  I have begun to read the novel but find I can't read for too long as my nystagmus causes problems, so Mum reads it to me also. 

Our maths lessons have been about prime numbers, factors and multiples, today and every Friday we have a ten question quiz to see how we are going.  Maths has always been an area that I feel more confident in since having my tumour.

We did a fifty word spelling test as well as a writing test on Tuesday, by the end of them my head felt like a spinning top that would take off and fly any second and I felt like I just wanted to go, lay my head down on a soft pillow and sleep.  I had a headache and my stomach felt churned, my energy was totally depleted it was a tough day.

The Tuesday had taken its toll on me, Wednesday I was still fatigued, my eyes kept closing sitting waiting to go to school and I felt ill.  Mum decided that I needed to recuperate, I slept which really assisted, later in the day Mum worked with me on some school work.  Sometimes you have to listen to your body, telling you when you need to stop and rest.

Today I was jubilant because it was the end of a long, tiring week.  I must say that my favourite class today was Christian Living, we were learning about Joseph and his dream coat and the teacher presented it in such a believable way. 

We went to Stromlo tonight because Jarrett was running at the Stromlo Festival School Challenge, there were so many people there, they had thirty minutes to run and had to run as many laps as they could.  Many people ran or jogged about one lap and then walked, Jarrett ran eight laps which also was eight kilometres in the time, he and only one other person ran that many laps.  It was such a glorious night to be out in the fresh air with just a gentle breeze and splendid views of our city.  Canberra is such a lovely, peaceful and unpoluted city to live in and I feel so priviledged to live here.

Tomorrow while Jarrett is training at the AIS I am going to try to walk 800m with my rollator, I am hoping that my back will not stop me from achieving this goal, as you know I am one determined girl and I don't like having things stop me from achieving the goals I set myself.  Next week I see my paediatrician and the dietitian, I am also looking forward to school again as well as seeing Jarrett run in the 3000m Championships.

Thank you to all the people who are following my Blog and for the heart felt messages you leave, you are all such an important part of my journey.


Anonymous said...

HI Our Dear Dainere, just a short acknowledgment of your blog today , I am quite tired after being with my mum and dad all day so am going to bed , but just wanted you to now ive read todays entry and will respond over the weekend , You take care now on your attempt to do the 800 mtrs , dont want to upset your lower back , , lots of love and hugs stuart and meryl xxxxx

Anonymous said...

Hi Dainere,

Had to catch up on your blog as hadnt visited for a little while.

Such a busy time you have had. HAPPY BIRTHDAY (a bit late). 13 is a milestone, you are an inspiration to teenagers everywhere and a good example of the fact that lots of teenagers are wonderful.

I hope you continue to like school even though it is challenging. Your eye thing sounds really annoying and another challenge for you to endure.

I love your photo, you look so pretty and definitely growing up.

Keep Smiling :) and keep blogging


Anonymous said...

HI Dainere, well you have been doing exactly what we used to do at school , ie covering books to protect them.

Yes jarrett has the right idea , it is the competition that is important , winning is a bonus .

Lets hope Rhiannon has hit the nail on the head with it being schol seats etc , you have to be ergonomically aligned

I wonder if the Nystagmus can be fixed ??

Oh Dainere , I was never anygood at Poetry , but Maths , A different story i loved it , i could not get enough, me and another boy , in hsc year did heaps of old hsc exam papers and the teacher marked them , so that the teacher could use them in class as examples , and the teachers name was Mr Christian . I just loved maths , and even now , love figures . may be maths and brain tumours go together , as you feel more confident in maths since your tumour , how interesting, may be it stimulates that part of the brain.

Yes my friend always listen to your body , it does speak to us .

Another plus for Jarrett at Stromlo.

Weve talked about your amazing success at the 800mtrs Dainere , well done .

well off to see mum and dad soon so have a great week , take care . LOve and hugs from stuart and meryl xxxxxx

Anonymous said...

Hi Dainere,
Apologies for not been in touch sooner. I'll explain why later.

Belated Happy 13th Birthday beautiful girl. You must feel so proud to be a teenager. You're parents now have 3 teens in the home, I bet they don't feel old enough to be parents of 3 grown up teenagers. Ask them! My boys recently turned 14 and 11 so have entered Yr 8 and Yr 5. I certainly cannot believe that I have a 14yr old son. He went to his first disco the other night, I was a little worried but glad he had fun and more glad once he was home!!

Yr 8 sounds busy. You will do very well in english and the poetry topic as you can write, express yourself way beyond your years. It's a gift that not many young people have so keep writing (typing) and you've already had your first book published at 12 yrs, imagine what can happen in the next few years? You're very clever Dainere.

I read Tess was having back surgery on Feb 16th. I hope she is okay. This is why I have been thinking of you and not writing. I have a back injury, a ruptured disc in my lower back that has caused me absolute grief. I have been in agony at times, questioning how infact you cope in the grips of pain and what you must go through. The specialist says I need a cortisone injection which should help.

Not to mention Nalani, how's she coping now? And Jarret, runs like the wind by the sounds of it. Your mum is Wonder Woman keeping up with you kids.

Do you have a PO BOX number in Canberra where I can post something to?

I have not been at work much this term but hope to return soon. I work as a Teachers' Aide in Special Needs Dept of a boys high school so miss my kids and meeting the new year 7's is always great. One of my boys has your eye condition, he has everything enlarged on paper to make it a little easier. Do you think this could help? He turns his head to the side to focus a bit and like you, has a great sense of self and humour. There are so many diverse learning needs, kids with academic, health and social needs. I love my job and miss being there with them. So when you talk about school, I can picture you in the classroom and what and how I could help you. Although I do struggle with certain subjects!!

Take care, be strong, you're doing the right thing listening to your body to slow down at times, you're giving me strength at the moment to keep going.

Love always, Fran xo

Ali Davies said...

Hi Dainere

Love the mindset you describe of Jarrett - not being always about winning but being about doing our best. Doing and being the best we can in any given moment is a great thing to focus on. Also to accept that sometimes our best can be different on one day to another can be a way of being really kind to ourselves.

Hope your walk with your rollator went well. Rooting for you.