Sunday, October 10, 2010


8th to 10th October 2010

'When a door closes if we look for an open window then we will eventually feel a breeze blow into our lives that gives us hope'

Although my pain continues, I try to conquer it each and every day, I don't give up, I don't sit around feeling sorry for myself and I try not to let it stop me from smiling. My right ankle, heel and left wrist are distressing me but I am rising above the pain as best I can. I am using pain killers, heat, massage and deep heat to assist as well as the power of the mind, I am going to beat this pain eventually.

Friday was a magnificent Spring day in Canberra, the birds were chirping melodiously, the sun sparkled like a diamond and the air was clean and fresh. We played Upwords and Guess Who and went outside to bask in the glorious rays of the sunshine. It was virtually the perfect day, one that you want to freeze in time and not let go of.

My trip to Sydney has been postponed, my paediatrician will now do a thorough examination, bloods and a weigh and measure next week, he will report back to the Sydney Team who will then decide where to go from there. I have been keeping a record of my food intake and my seizures so that it is all documented for my doctor. It is actually a relief for me not to have to go on Monday because it is the start of the last Term of school, I have already missed so much school last year and this year it has been difficult, I just want to be part of my class and enjoy our last term together, a term that is usually filled with many exciting events.

Jarrett had a sports massage, it was a deep tissue one, this is to prepare him ready for the Summer Athletics Season, he, like me suffers from tight muscles and even though he religiously stretches every single day he just needs those muscles to be loosened to assist been able to stretch more successfully. Nalani was very interested in what the sports massage therapist was doing, this is something that she is looking at studying when she finishes school next year. Poor Jarrett though, a deep tissue massage is neither relaxing or painless, it actually leaves him a little sore, then a couple of days afterwards, he feels fantastic, he says it is all worth it then.

We had another game of Upwords and watched some more of the Commonwealth Games on television, it is wonderful how well the Australians are doing as well as some of the less known countries who are receiving medals for the first time in the history of their Country competing.

Saturday morning Jarrett had running training at the AIS, they could not work on the track because the Transplant Games were on, so they did hills at the back of the AIS, by the end of the session, Jarrett's legs were tired from the sports massage. He had no problems again with his asthma or vocal chord dysfunction so is really encouraged by this. While Jarrett was training, Mum, Nalani and I went for a walk, the sun was trying to break through the early morning cloud cover and once it did, it was a beautiful morning.

We played Upwords while having a cup of tea and then Mum and I went for a walk to Gungahlin, I found that my heel was so painful, just a slightly bumpy surface made it throb with dreadful pain which I would rate at a nine out of ten. I had to lift my foot off the footplate on the wheelchair to try to eliminate the pain, then Mum checked my ankle and found that it was swollen as well. If my ankle had not been injured in Sydney at physiotherapy when I was there in September then I probably would have been much more mobile, using my rollator, but it has really delayed my progress and that for me is so frustrating. I had been able to walk around the kitchen and into the family room which would be about thirty metres but now I can't even bear to put weight through my right foot and with my left wrist being weak and sore I can't grip the rollator either. Never mind, I am going to be determined and I do try despite the excruciating pain but I don't want to further injure it and make it worse either.

I rode the exercise bike for ten minutes yesterday, it was only slowly because the rotating motion caused pain in my ankle and heel but I rode a little over one kilometre, at nine minutes I was in sheer agony, I was crying and Mum told me to stop, but I had set myself the goal of ten minutes and I was determined to achieve that. I have also been doing my strengthening exercises every day just hoping that this will all assist in the healing process. I think sometimes I become impatient and want it all to be fixed straight away but I have to accept that it does take time unfortunately.

We watched more of the Commonwealth Games, I was so excited to hear that Louise Ellery, the athlete with a disability who we have actually met, won Australia's first Gold Medal for Track and Field, she won in the shot put, she is a truly inspiring person and is someone who always has a smile on her face.

I love to read, however I have discovered that reading out loud is a difficult task for me because of my hearing loss, I am unable to hear or concentrate on the story, then I am not able to comprehend what I have read. If I read to myself I am able to comprehend much more clearly or if someone else reads to me, that is much easier also. I am learning what my limitations are and that you have to accept these and find an alternative to what you may have been used to doing.

The wonderful and talented Christine sent me her three books, 'Tahlia, You Can Do It!', 'In The Garden Of My Delights' and 'The Hidden Journey', they are marvellous books and all very different. Mum is reading 'The Hidden Journey' to me as it is a touching and emotional story about her husband's battle with a melanoma.

Another sleepless night with pain especially in my heel but I was up ready for running training this morning. The day that greeted us was not ideal, it was rather overcast and a little on the cool side, but it did improve so that we could go for a walk around the AIS whilst Jarrett went for his long run with the squad. The birds were all extremely vocal this morning and we even saw a couple of kookaburra's serenading each other along the trail.

I did some more reading, looked through some recipe books for dinners for next week and went grocery shopping to stock the cupboards ready for our return to school. After lunch I made some Chocolate cupcakes with strawberry icing for Nalani and Jarrett to have on their school lunches tomorrow, they love it when I cook for them.

Tomorrow at school I have Chapel, PE and Integrated Studies in the morning then I will go back after lunch for double English. I will be able to use my FM transmitter for the first time with my teacher and I am excited about the prospect of being able to hear so much more clearly within the classroom, I think this Term is going to be fantastic!


Anonymous said...

Dear Dainere
We are so pleased you don't have to go to Sydney on Monday. It is good to hear that you can get some of your tests and treatment in Canberra at last.

Hopefully your foot and hand will start healing real soon so that you can get going on the rollator again, as you had been doing so well.

You are so lucky to be having the lovely weather you describe in Canberra. It has been terrible up here. Heavy rain for three days, strong winds and no sunshine certainly don't make for a happy Nan and Pop. Oh! well, guess we get to watch TV, sew, make cakes and special meals. It has been so bad that poor Chifley has had to miss out on his walks too.

We hope you really enjoy this term at school. It will be so much better for you being able to hear properly.

Stay strong.

All our love
Nan and Pop xxxxxxxx

Anonymous said...

Dear Dainere,

So glad to hear that the weather in Canberra is improving. I suppose it won't be too long until we are complaining about how hot it is!
And the cricket season has started here and in Canberra, too, so summer MUST be coming!

It's good news that you don't have to go to Sydney this week but have tests next week while you are at home. Your paediatrician sounds very understanding and empathetic. That is so important.

Good to hear that Jarrett's training is going well. His exercises seem to be successful which is great.

You are very dedicated in your exercise training as well. All your exercise biking and strengthening must be building you up. It's a known fact that exercising makes us feel better, as long as we don't over-do it!!

Chocolate cupcakes with strawberry icing...YUM!! No wonder Nalani and Jarrett like you cooking for them! Looking through recipes is always interesting, even if you only think about making them! When my boys were younger, they always loved looking through the Women's Weekly Birthday Cake Book to see what sort of cake they would like to have... for WEEKS before the date!

Enjoy Term 4, 2010. There are sure to be lots of exciting school events. It will be wonderful to try out your FM transmitter.

Thoughts and prayers,


Anonymous said...

10minutes on the bike ... I'm so proud of you!! Also glad to hear that you can get some of the tests done here instead.
'Persistence prevails where all else fails'
Rhi xx

Anonymous said...

Hi Dainere , yep thats right NEVER GIVE UP , thats also my motto, being positive is a proven help in beating these issues Dainere , I am so proud of you , as one human to another.Isnt it great when you can hear the birds chirping , thats so nice to hear you say "├┐ou just want to be part of your class"

Well done Jarrett having the deep tissue massage.

Sorry about the painfull ankle still , being able to be on the bike for ten minutes is fantastic , well done , BUT dont over do it now .

I can taste those chocky cup cakes with strawberry icing , yum .

looking forard to hearing how your FM transmitter goes in school at English , my BAHA seems to be behaving itself at present , I remain confident . lots of love and best wishes . Love stuart xx

Anonymous said...


Read your journey for the past week and I too am looking forward to term 4. It will fly by you know and already, Xmas decorations are for sale in the shopping centres - it will be upon us soon!!

Fingers crossed for sunny, warm weather down in Canberra (and for your Nan and Pop) to warm your bones and Spirit. I'm a bit like you, I certainly prefer sunshine to help me feel good.

Holidays are over, my boys are not keen to get back to school however I explained to them how lucky they are to have good health and attend school without hardship - I think it sank in!!

Our puppy Coco will miss us once we return to school as he thoroughly enjoyed the holdays with us, even attending Sydney Olympic Park for a picnic last Friday. He is lots of fun and the training is going well.

I pray tonight that your sleep will be a little easier than it has been and that you do feel rested in the morning when you wake for school. I wish that you didn't have any pain actually Dainere, you are so brave.

Take care
Love Fran

Tracey Hawkins said...

Hello Dainere,
Hope you had an exciting first day back to school. I am keen to come visit again. But have lost your address when my computer crashed. Can you email me privately and then we can make a date:)

Best wishes Tracey

Anonymous said...

Hi Dainere,

I just wanted to say thank you for sharing your story. I just finished reading your book - it moved me so much. Made me cry, made me smile - but most of all it filled me with such gratitude.
You are an amazing little girl.
Thank you for being brave enough to share your story.
I surround you with love and healing energy.
I am going to read your book to my little girl.
Lots of hugs to you!
Kate Galvin

Dianne said...

Dear Dainere,

How was your first day of Term 4 and did you use the FM transmitter? I hope it is working well for you to make this term a whole lot clearer.

Tomorrow I will be working with primary and secondary children at the AIS doing some track and field events. It is a special day sponsored by Snedden, Hall & Gallop; it is the first time I'm helping with this event so I'll find out more as I go tomorrow. I just hope it is fine weather for kids' enjoyment.

It was really great for Louise Ellery to achieve Gold at Delhi, she was determined to go there and do well...persistence pays off and like Louise you are just as determined to have a go and always with a lovely smile.

It is good to hear you can stay home for some testing rather than go back to Sydney so soon. Dr Rosier will take good care of you he is a really caring Dr.

Sleep well and fight on another day with hope and love from all around you.

Lv Dianne xxxxxxxx