Saturday, April 24, 2010


23rd and 24th April 2010

Following the build up to my book launch which was like living in a fairytale, the past two days have seen my life go back to normal. I will however never forget the wonderful experience of my book launch, what it meant to have my book published, to meet all the incredible people who were so enthusiastically involved and to know that through my wish I am going to be helping to make a difference today and into the future.

Yesterday I spent much of the day composing thank you messages by email and letter to the many guests at my book launch that placed their names in my guest books. In my letters I let people know that together we can make a difference for children with Brain Tumours and that the world is a better place because of it.

Jarrett had a sports massage appointment and I went with him and Mum to that. They really get into the muscles and I almost wished that it was me there, even though Jarrett was screwing his face up, he said it feels marvellous once it is done. We then had to call into the local shops for some milk and the girl behind the counter recognised me from the photograph and story in the Canberra Times about my launch from the day before, when we were out of the shop Jarrett commented that she did not say she recognised him - poor Jarrett!

I was still feeling tired yesterday, I think all the excitement has caught up on me, I also had terrible pain in my right knee again and when I tried to walk I actually lost balance and fell, it was a little scary but Mum grabbed me just in time before I hit the ground. My knee then swelled up hugely and I could not bend it. Mum iced it and rubbed it and told me to put it up so I watched a DVD called Hoodwinked. The swelling went down a little but the pain remained with a dose of panadol it improved slightly. I went to bed with it still painful and because of what had happened I was unable to do my exercises which I was so disappointed about. I guess you have to take the good days with the bad days and appreciate what you can do when you are able to.

We watched Stateline on the ABC last night because they did a follow up story about me, WOW! it was extraordinary, they used footage from my launch and the story was narrated by my speech, we all cried remembering the happiest day of our lives in a long, long time. Thank you to Chris and the crew for the way that they can tell a story so beautifully and with such a human touch.

The forecast was for a change in the weather overnight and it happened, I woke several times during the night in pain and feeling extremely uncomfortable and then I had that same nightmare that seems to haunt me mainly when I have a restless night sleep. Mum is always there though to comfort me the best way that she can, I am so lucky to have such a special Mum.

This morning it was drizzling rain and very overcast, the type of day that many people would say is a great day to just stay in bed. My knee is still painful but that is most likely because of the weather and I also have some pain in my lower back this is probably also from the cold. As the day progressed the rain became heavier and the winds whipped up, as I looked out at the bleak weather that blew all the delicate white rose petals off the bush outside I felt a little bleak also. It is funny how the weather can make us feel that way.

I brightened up though when the weather cleared a little and we headed off to watch Jarrett run in the ANZAC Day Relays at Campbell. Nalani was going to do them but she is still getting over a calf sprain. When we arrived at Campbell the winds had come up again and they had a real chill in them, I was so pleased that we were waiting in the car until the race started but I was well prepared because I had my scarf, beanie and a warm jacket on. I checked the temperature reading that we have in our car and it was only 14 degrees. The rain started to drizzle down again but just when the race started it stopped and I was able to get out of the car to watch. Jarrett was the second runner the distance for each runner was 3.68km and Jarrett was all fired up and wanted to run a good time. The first runner came in and Jarrett took off flying like the wind that was blowing. It was almost like he had wings on his heels as he ran the course and I cheered him on and he came in in the time of 11:54:00 which is a terrific time, in fact he ran the fastest time in his team. Then he was asked to be fourth runner for another team and again he flew and for his second time around he ran 12:07:00, his coach was impressed. So altogether today he ran 7.26km, he is amazing and I am so proud of him. As he was doing his warm down which is extremely important for a runner to do even though you often feel exhausted after a race this helps look after your muscles, anyway while he was doing this the rain started to come down again.

My knee is still very painful and it has now swollen up again, when I have attempted to walk again today my knees, particularly my right one have just buckled. So I am going to stay off it and hope that once they become used to the colder weather they will settle down for me. This is a little bit of a nuisance and I am hoping that it will not interfere too much with my preparations for the Cross Country and me trying to walk over the finish line. Even though I would like to walk 100m I am now thinking that if the weather is against me then I have to be realistic and even just to walk 10m would be a huge achievement.

As the rain is now pouring down and the winds bending the regal gum trees outside the house I am going to watch a DVD and have a lovely, warm hot chocolate with some whipped cream on top, I call it a Mummy special because she makes that for me to cheer me up and it is delicious.

Next Tuesday is back to school, I am looking forward to it and hope that I will be able to cope this term. I also wanted to let you know that I have now had 36 online sales for my book, that is fantastic and next week my book is supposed to be in the book stores then hopefully we can sell them out, raise more funds for Brain Tumour research and head towards a best seller!

I forgot to tell you all that after signing all those books at the book launch I had a blister on my finger, how fantastic is that? I think many authors probably get blisters when they are signing their books and perhaps it indicates just how many I had to sign and that is terrific, the more the better. Also I have placed some pictures from the launch on the last few entries of my Blog. As I think about it I have a smile on my face. See you can always find a way to blow away the clouds and let the sun shine in your life.


Anonymous said...

Dear Dainere

It's sounds like a cold, wet and windy Canberra day. We had a very hot start in Sydney today and it got to about 29 and then the clouds rolled in. It's been raining now for quite a while and I think autumn may be here!

I'm sorry this weather is causing you problems. Hopefully you will get used to it and feel better soon.

Well done to Jarrett - isn't he terrific. Keep up the great results Jarrett.

I loved the Stateline show too and I agree Chris is wonderful! My sisters and Neah have all told me about your beautiful thank you messages. They were all so touched by your beautiful words. You always get it just right gorgeous.

I hope the Mummy special warmed you up and that you have a good night's sleep.

Lots of love and big hugs
Tess xxxxxxoooooo

Anonymous said...

Dear Dainere,

I just wanted to say that you are truly an inspartion to all people your age.

I have ordered your book and I can't wait to start reading it. I understand that sometimes there are things in life that you can't help but you learn to live with them.

I hope that I can meet you in person one day!


Anonymous said...

Hi Dainere,
I haven't met you yet but I have been following your journey with interest. My husband Bob who is the chaplain at Thoroughbred Park was at your book launch on Wednesday and bought a copy for me as well as a few extras for other family members. I finished reading your book in one day - everything else had to wait! Thankyou so much for sharing your life with us and for being an inspiration. Bob gave the sermon at our church this morning and he quoted from your book - to encourage others to look for the rainbow and not to get bitter when hard things happen in life. Many people in the congregation were moved by your example and have expressed interest in buying a copy for themselves. So already you are having an impact and your dream is being realised!
With thanks,
Evelyn Prior

Anonymous said...

Hi Dainere

You don't know me either. I am Bob Prior's daughter and he has told me how special you are and about your inspiring journey.

It's funny- I had no idea my Mum had written to you today...I just came on here to your blogspot to write to you and was very surprised to see my Mum wrote you the last comment :)

My Dad felt honoured to be at your book launch and I was so excited and thankful when he bought a copy of your book for me. I had seen your blog and the first story of you on Stateline and was thinking how amazing it would be to read your story.

I haven't finished reading it yet (I don't read as fast as my mum hehe)but already I am so grateful to you for sharing your story with us.

You are a very brave and inspiring girl. I am so sad to read all the horrible things you have been through. Your courage and attitude are remarkable. I am thankful to read what an amazing family and support team you have behind you. Your Mum sounds so special and I am glad you have her with you in those low moments.

I have just read the part in your book about your febrile seizures and really felt for you. My little boy who recently turned 3 had one of those last year and I still feel upset whenever I think of it and how scary it was. It is horrible to think how you've gone through that several times...and so much more on a regular basis. The storm must feel very long sometimes and I hope it will be behind you soon with lots of rainbows up ahead.

Anyway I just wanted to tell you we have been and will continue to pray for you and your family.

Keep smiling- you have one of the most beautiful smile's I have ever seen

Love Alison x
P.S I also saw the follow up story on Stateline...I'm glad it was such a special day for you and your family. You spoke so well and looked gorgeous

Anonymous said...

Hi dainere

I brought your book online a couple of weeks ago. I have just revived it yesterday!!! I was so excited to open the bag. I started reading it as soon as the bag was open. I feel so touched to be able to read your amazing journey. You are an amazing girl with a very big heart!!!!!!! Keep going I know that the rainbow your looking for is comming up!!!!!!!
Take care


briana_commisso said...

Hi Dainere

I hope your book launch went well. I bet you looked real pretty. I really miss you and hope we can catch up soon. It was nice to see you in church a couple of weeks ago. I have asked my mum to buy your book for me. I think you are an amazing person and very brave. I might be having an operation soon and I hope to be as brave as you. Thinking of you will help me alot. I am always thinking of you and hope you had a great day today.

Love Briana

Anonymous said...

HI dainere, My name is Jen i went to the book store wanting to start reading a book for the first time came across your book which drew me close to it so i brought it and have just started reading it while im on night shift. Its such a mirrord storey of what my son and i went through ten years ago im feeling for you right now and your mother in my thoughts and all the best keep positive my son (christopher) use to say when he wasnt the best that he was 'a little bit good'kind thoughts jen