Sunday, September 26, 2010


25th and 26th September 2010

I think life is what the morning was like in Canberra, often filled with cloud but when the clouds that cover our skies finally clear then our day is filled with sunshine and hope. An overcast, indifferent morning greeted us at the AIS for running training and when the breeze came up also, it was actually very chilly. Jarrett and the squad were doing 400m repetitions, eight in all, two sets of three followed by a set of two and in between sets a 400m walk. We watched Jarrett, since his severe asthma attack at National Cross Country Mum has been observing him very closely, that is what Mum's do, they always worry about their children. There was nothing for her to be concerned about though because Jarrett ran extremely well, doing excellent repetition times. By the end of training the sun had finally decided to grace our skies, you could feel it becoming stronger by the minute.

We had to drop Nalani at the Mall after training because she was spending the day with her friend watching a movie called Charlie St Cloud, with Zac Effron in it and then they were looking at clothes and buying a Birthday present for a friend. We went to the Life Line Book Fair to look around, I found a book on gardening and a couple of novels to read. In the afternoon we had to pick Nalani up, she said the movie was fantastic although it was quite sad in parts, she said she would recommend it to anyone. I found that even though I had not done an excessive amount, it had tired me and when I become tired, my pain becomes worse and I often feel quite nauseous also, it is so hard to learn what my limitation is, as some days it is much less than others.

In the afternoon I actually had another seizure where I blanked out, my paediatrician said this is an absence seizure, my pupils dilate and I have to be shaken gently to bring me back. This time though my arm did not droop, but I did have really dreadful pins and needles for a couple of hours afterwards and felt so drained of energy.

I rested and then I played two games of Upwords, helped with dinner and then it was time to sit and watch the football. My Wests Tigers were playing the St George Dragons in the preliminary final to see which team would play the Roosters who had already qualified for the Grand Final the night before. My heart was beating so rapidly, I can only imagine what it would be like for the players, they must have been so nervous when you have played and trained which such commitment all year the ultimate goal is to make it to the Grand Final.

The Tigers showed such enthusiasm and courage despite a large penalty count against them, they deservedly scored the first try and Benji converted, it was 6-0. Unfortunately, due to some luck and poor refereeing the Dragons came back and scored their first try and converted to even the score at six all. Close to half time though through Tiger magic they scored under the posts and of course Benji easily converted, the score at half time was 12-6 in favour of my Tigers. I was feeling confident as the Dragons had looked rather flat and had been known to have trouble coming back from a deficit at half time throughout the season. I kept thinking that the Tigers would have to stay strong in defence in the second half or they could lose.

The second half was tightly contested, the Dragons scored another try which was converted early in the half, with the score at twelve all, my palms were sweating, my heart rate had increased and my stomach was churning with butterflies, each team made errors, made break throughs but nothing eventuated from them and then in the last minutes of the game the Dragons were down near their line and had positioned themselves for an attempt at field goal, the ball went up, I held my breath and willed the ball not to go over the posts but agonisingly it went over, the flags were raised, it was a field goal, the Dragons took the lead 13-12. There was still time and the Tigers with all their courage and determination were not out of the game, they had chances but they just did not seem to have luck or the referee on their side and right down to the final hooter they were still trying but it was not enough. The Dragons had won and will now play in the Grand Final next Sunday against the Roosters.

I felt so devastated, as I saw the looks on the players faces I cried. I think I would have rather seen them lost by a large score like the Titans the night before because losing by one point is shattering. After the shock and disappointment, I thought about my own journey and my favourite quote that has seen me through the worst times of my life, 'you have to go through a storm to get to a rainbow' - the Tigers have gone through the storm this year and I truly believe that 2011 will be the year of the Tigers!

I had an extremely unsettled night with pain in my right ankle and knee and I think watching such an emotional game of football before bed does not help either. This morning my ankle was swollen and stiff, I was tormented with pain when I bent it and it brought fresh tears to my eyes. Today was running training again at the AIS but it was Jarrett's long run session, today he did an hour run, again no problems with his asthma. We went for a walk in the sublime Spring sunshine that radiated so brilliantly from the crystal, clear blue sky. The warmth on my ankle eased my pain just a little. Seeing the vividly coloured birds flying fervently through the skies, the intense colours of the blossoming bush and the excited chatter of passersby made me appreciate being able to be part of such a dazzling day.

My disturbed night had left me feeling exhausted, even though I had thoroughly enjoyed and been delighted to be outside this morning I needed to come home for a rest. Resting revives me and I was able to write a Christmas list for my Nana and Pop, they say "no list, no present", I think they are only joking but I did mine just in case they aren't.

The next activity I was ready to pursue was my canvas painting, I began with my tree trunks and then mixing a delicate lilac and pink I used a sponge to create the effect of alluring blossom trees. I am delighted with how my painting is looking and hope to complete it during the coming week. Jarrett and I decided to play PlayStation, we played Rugby League, the first game we played was Tigers verse Dragons and we were able to get revenge for last nights game, we flogged the Dragons, which put a smile on my face. We were an unbeatable team and went on to defeat Manly, Roosters and Panthers.

I have overdone it again, painting and then PlayStation, my right hand is now swollen, painful and unable to grip anything. I just want to be able to do what any other young person can do in a day, I forget sometimes that from my high doses of toxic treatment , having the capacity to be like my peers is just not possible and it never will be.

Tomorrow is a public holiday in Canberra, it is called Family Day, however Dad has to work, they are doing building renovations at the Race Course, everyone else in his office has the day off except for him. Mum, Nalani, Jarrett and I are planning to go to the oval and play a game of cricket if the weather is as beautiful as today. Jarrett also has to do running training, on a Monday he goes for a thirty minute run. One of Nalani's friends is going to take her to Tuggeranong for a meet and greet at Sanity for Short Stack they have released a new song called Planets and will be selling and signing CD's, Nalani and Catrin are colossal fans!

'Our thoughts and actions from today can shape what our own and the people around us tomorrows are to be'


Carol said...

I was thinking of you and your beloved Tigers during the game last night! Never mind, they made it so far - it really has been a great season for them. We often only celebrate those who win, that's a shame.

Hey - I will be on ABC Canberra tomorrow because of your holiday! Between 11am & 3pm.



Anonymous said...

HI Dainere, well what a game that must have been , sorry your team , the Tigers did not quite get through.

Also sorry to hear that you had another seizure.

Yes I think you may be right my young friend , it was quite a day and you would have so wanted your team to win , and consequently did not have a good night. Isnt this a lovely time of the year , all the flowers coming out and the birds , loving it , We have lots of Rainbow Lorikeets, as im sure you do .

Wow , just watched Junior master Chef Dainere, it was so good , those children are amazing little chefs, You children never cease to amaze me , with your talents , and you are right up with the best Dainere, The Rainbow fairy will be sending you some magic when you next come to Sydney, so watch out for the posty. Take care.

Love and hugs stuart and meryl xxx

So Now What? said...

Hi Dainere,

I am a friend of Carols on twitter and she has spoken of you often.

I've watched from afar but never commented.

My husband went up to the Titans game at Suncorp on Friday and they had a SHOCKER. Lots of words were yelled that no woman or child should have to hear I think.

His team was always West Tigers though as he grew up in Drummoyne so he was just as desperate to see them win but not this year. Not their year.

So from reading above, sounds like you are extremely busy and quite the artist. I tried to paint a mini canvas last year for a sick friend and used oils. Apparently the day after she put it on her wall, she looked like a smurf from the blue oil paint. My bad.

Hope you don't mind me coming back each day and having a read. You are an amazing little lady. Bern xx