Real for Life and stuff!

Hello Friends,

(Please read until the end, because it is VERY important!)

High Five to all those that have survived the school holidays....the end is finally in sight!

Commiserations to those that are in the corner rocking!
(maybe the latter is just me!).

Lots of sad things have happened around us in the last 2 weeks and our love and thoughts are with many. Adored family members and very loved pets passing away is heartbreaking.
Every message has made us all sit in heartbreak and emotion.

We have also been so incredibly busy that we are all very tired!
My inability to write everything on the calendar these holidays has created a few obstacles, but we survived and still attended!
(IF YOU MESSAGE ME a get together.......please say WRITE ON CALENDAR!)

As someone very wise said to me recently "Other peoples lives is none of my business. No one knows what really happens behind anyone's front door".

I am slowly learning that and learning not to discuss things about others anymore.
Mainly my husband and children.

I can happily say that due to stress, our house is the best it has ever been!
Decluttering and tidying up the house, declutters and tidies up the mind!

I have spent 8 weeks on it and will finally finish my mission tomorrow.......
the arrival of the firewood!

Everyone knows that my fireplace is my Valium and anti depressant due to the seasonal depression I suffer.
It is like a squirrel gathering its nuts for the winter!
I cannot wait and will be sooooo prepared!

We finally had our NDIS meeting in mid March.
(National Disability Insurance Scheme. An application to get everything and anything Amelia needs and wants to help create her amazing life. Paid for by the government)
60 odd hours of work from myself and many awesome professionals around us.

Today we received word that it has had to go to "a higher body" due to the amount required and asked for. It is big and needs to be assessed closer.
Cannot wait to hear their end assessment.
(we asked for a lot)

Amelia and Tom are good.
Amelia is speaking her mind A LOT now (we have gone from one extreme to the other) and Tom.......well he has always been incredibly outspoken!

Amelia is not liking her class this year at school, but we are so proud of her for talking to us about it. We will be addressing the changes that need to be made next week. Her life is too short to think otherwise.

Tom, Scott and I are extremely confused on High School's for next year for Tom , due to Tom loving one and all of his friends going to another.

BUT we are all good.
We have a large amount of communication and an even bigger amount of love AND communication.

We may have a 14 year old who needs 100% assistance in toileting, feeding, moving, reading AND drinking......BUT she needs no help in intelligence.

Amelia had ovarian cancer.
We have been told it will return somewhere else in her body.
There are multiple organs that a "mixed germ cell tumour" could suddenly appear in apparently.

Ataxia Telangiectasia (Amelia's original diagnosis in 2010) has a major link to cancer. It is one of the major side affects of having A-T.
Amelia got it at 13 years old and it has a high probability of returning.

3 weeks ago Amelia had the regular surveillance ultrasound on her abdomen and pelvis.
RED FLAGS have been waved over the lesions on her liver (we have been keeping an eye on one and now another has started).

Blah Blah Blah Blah

Still waiting to hear.

Welcome to the life of a special needs parent.


If you can walk for 10 minutes, 30 minutes or 60 minutes for ALL cancer................
Please join our team.

Amelia is so incredibly proud to have her own team this year.

"Amelia's Fluffy Unicorns"

Could there be a better name ?!?!
As you could imagine, Tom is beside himself about asking his friends to join a team by this name!!!!!

SEPTEMBER 22 - 23 2018

4pm Saturday till 11am Sunday.

30 Mins will helps us greatly.

She has chosen the name and we all sincerely thank Emma for constantly confirming with Amelia.

Please join whether you can walk for 10 minutes or 4 hours.
ANY help is extremely appreciated.
We will continually walk from 4pm Saturday 22nd September till 11am Sunday 23rd September Sunday as a team.

Tom and Amelia are desperate to ask their friends to help them!

(please consider a unicorn anthem or costume when registering!)

BUT let me tell you all...

You have never seen anything like this.

cancer affects us all.
this organisation helps us all.

Please donate or join our very long walk below. 30 minutes would be awesome!

http://l.facebook.com/l.php?u=http%3A%2F%2Fccau.convio.net%2Fsite%2FTR%2FRelayforLife%2FCCVIC%3Fteam_id%3D60462%26pg%3Dteam%26fr_id%3D5396&h=ATObFOj5Z7EiI3scwQg1LebJQMy8ZhliufrDvA0Hl53Xxq0oUUmzUTX9Sm09Ninl-i4t1ULwOUTiw38X33YlEUP3k0gegkSeGnd3fNgTrNokA75pMiXn

xxx

ICAN walk

Hello and HAPPY EASTER 2018!!!!!!!

Thank you for your beautiful responses to Tom's 50km walk.
Reading all the messages, really made our hearts swell.

I was like an annoying leech throughout the whole experience.
I was there at the beginning and every single spot, until the end.

I drove past these amazing walkers, IN A CAR, and waited approximately 50 minutes each time, till they met me at the next destination.
EVERY stop!

(Tom's diabetes levels made me do it)

I chose to TOOT the horn a zillion times EVERYTIME I passed anyone with a white ICAN t-shirt, on my way to the next stop.
It made me feel better for driving the whole way!

At one point, I saw Tom look at me and roll his eyes, but I just tooted more!

At the halfway point, in front of many others, he came and kissed and hugged me.
"Thank you for helping me through this" he said in front of anyone listening.

I almost cried until I looked at all of the other adults around us.

Parents walking WITH their kids, parents providing snacks and lunch at ALL stops for ALL kids AND teachers WALKING to supervise everyone.
Adults everywhere supporting.
I was just supporting MY own and with HIS Type 1 Diabetes.
Who knows the reasons for other adults!

Absolutely mind blowing!

NO ONE could name a time that RCH had helped them or their family.
They were just doing it!

My family and I waited 60 minutes for Tom to come into distance at the end.

For Tom to begin the finish stretch.

4pm and we are waiting for a walk to finish that began at 7am.

None of us had a dry eye as he approached the finish line.

As I yelled at the people who stood in front of Amelia to MOVE!.....

We all screamed, clapped and blew whistles.

He had made it.

I think I had held my breathe the entire day.
I think I had been stressing about it since he signed up 6 weeks before!

Of all the 30 Primary School aged kids, no one had asked to go on the bus or get in a car, at any point.
It was amazing to witness.

I did not just cheer and congratulate Tom at the end....
I cheered and congratulated many children and adults.

It was a race I had no way of completing myself.

In the end they raised over $145,000 for a hospital that has saved our daughters life repeatedly and keeps her alive now.

THANK YOU EVERYONE xxx