Saturday, 20 December 2014



I am feeling rather reflective today and am processing many things.
It seems understandable with Christmas Day and the end of another year approaching.
Today is the first day in a long time that has allowed us to sit and do whatever our hearts desire.

The knowledge we have of 2015 is allowing us to look forward to what will hopefully be a wonderful year.
2014 has been very difficult and one we will be glad to say goodbye to.

Tom came home with another amazing school report.
The school is introducing a very thorough education session to all staff and all the supplies needed for a diabetic child while at school, on an excursion or at camp. This is in response to Tom having a severe hypo while attending an excursion and there being no "jellybeans" in the first aid kit.
(I had sent all supplies but Tom accidently left it at school).
He will be in a composite grade with children a year higher and his teacher sounds like she will be good for him.

Amelia is happy that she has most of the same staff and students that she had this year.
She is very sad to see one staff member being moved to another grade but we have reassured her that we will ensure they still see each other regularly.

Scott is in a full time job that he is enjoying and I am very proud of his work ethic to move beyond just the job role. He is now also passionate about emotional well being, kindness and happiness among the staff. If you are going to spend so much time together then you may as well make it enjoyable.

I am looking forward to a new family member coming to join us in late January.
A Labrador puppy from a reputable breeder.
He is a golden colour and will be a wonderful companion for all of us.
I am also grateful that Tom will have a playmate in the backyard.
Tom is already sleeping with a teddy bear, putting his smell on it, so that our new baby will have something to nestle into at night.

This past week my father in law replaced our revolting, stained carpets with a stunning vinyl floorboard.
It is amazing how it has not only changed the look of the house, but also our mood within.
It is calming to look at and does not make you feel like the house is constantly "dirty".
I am looking forward to open fires in Winter!

My dad also installed pay TV for us.
I am loving flicking through all the channels and watching movies.

Next year I am going to focus on returning to the book I began writing.
I have so much that I have already written and yet so much more to do.
That as well as keeping the house a bit tidier than this year !!

My dad is still not better and I hope with the surgeons he will be seeing in the future, he will be healed.

Next week will be full of excitement as Amelia and Tom open their presents.
I have been able to order many items online that none of us knew were available.
I just hope they arrive before Christmas!

In the last 2 months Amelia's feet have begun to "roll" when she walks. They are no longer flat on the ground and it makes assisted walking very difficult. She collapses to the ground often with Scott and I catching her fall.

Our new Premier announced yesterday that he aims to have Medical Marijuana available to "those who need it" by the end of 2015. He wants Victoria to be the first state in Australia to legalise something that is so badly needed.

2015 is going to be a good year.

Merry Christmas everyone.
Enjoy the excitement on children's faces and cherish family times together.


Monday, 15 December 2014



Today we had to have a conversation about death.

As you all know, we have chosen to protect the kids about the full knowledge of Ataxia Telangiectasia at this stage.
You never realise the importance of "saving the innocence of children" until you are in a situation like ours.

This is how it came about.....

Amelia returned from an amazing evening with a staff member from her school.
She has become close to the family and friends of this staff member and sees it as her special place.
But she was tired.
Exceptionally tired.
I lay down with her to cuddle and help her go to sleep.

She started panicking...
"Mum am I going to die?".
"Mum, please make sure I wake up in the morning".
I asked her why she was feeling this way and she could not explain why.
Had she heard something?
Did she feel something?

Amelia has shown on many occasions her ability to teach adults lessons about life.
She has been incredibly intuitive on many occasions to know things that we do not.
Was this one of those times?

"I feel like I am going to die".
"Am I going to die from my A-T?".
"I think about it all the time".
"I think I am going to die tonight".

I began feeling petrified and heartbroken all mixed together.

I told her that I will ensure she wakes up in the morning and we will talk about this more then.
She needed to sleep.

As I left her room, I began to panic myself.
What if it was going to happen tonight?

Scott and I stayed up for a long time.
We talked about how we were going to approach this.
We put her monitor on as loud as it would go.
We listened to her breathing as she slept.

The next day she woke up and said "I do not want to talk about it today".
I said she had no choice and we would be.

I asked her "Do you think you may die soon because of your A-T?".
She quietly nodded her head with tears in her eyes.
I then explained that A-T children do die sometimes just like some children die of an asthma attack or go missing from their front yard.
Lots of children and adults die too early for lots of different reasons.
We all die at some stage.
I explained that her inside health is excellent and that is how A-T children generally pass away. She does not have the kind of struggle with coughs and colds like other A-T kids.

I then moved the conversation on to where we may go when we die.
I explained that no one has come back to tell us of the place that we go to but I do believe there are people that love us waiting for us there.
I explained that if she were to die, Nana Val (Scott's mum) and Barney (our very loved labrador) are already there waiting.
She will be able to run, play, dance and sing.
Her A-T would be gone.
The place will have beautiful green grass, fairies and butterflies flying around and a gorgeous sunshine.
It will be magical and you will feel free.

The conversation approached missing those "left behind" ......................  us.
I explained that this magical place does not let you feel sadness.
You only feel happiness.
You will be there waiting for us.
We will be so happy to have YOU show us around when we die.

Dying is not a bad thing.

Scott said I did good.

I hope that one when the time does actually come to say goodbye, I have begun the process of easing some of the fear of dying.
Too sad that you have to have this conversation with an 11 year old.