Tommy OR Tom.

Hey Guys,

We have a very tired 11 year here at the moment.

He walked 20km's today in preparation for the 50km walk next week that he has signed up for.

It is to raise money for our local Royal Children's Hospital.

50 km + Type 1 Diabetic has meant a very stressed out ME for weeks now.

(How the hell is he going to do it as a Type 1?!)

During and after is going to be dangerous for Tom's levels.

It will more be after.

When he rests, his levels will plummet and no amount of apple juice or jelly beans will keep him safe!

One game of football (90 minutes) causes dangerous levels afterwards!

He is walking from Luna Park (St Kilda) to Frankston Pier....
IN ONE DAY.


"WHY IS EVERYONE SO NEGATIVE ABOUT ME DOING THIS?" he yelled at me last night.


I admit he has copped a lot of negativity from those close to him.
Those that are scared for him.
Those that are worried about his diabetes.


"I WANT TO DO THIS TO THANK RCH,

FOR SAVING AMELIA'S LIFE.

AND KEEPING HER ALIVE NOW.

WHY CAN'T YOU ALL UNDERSTAND THAT?!" he continued.....yelling.


I do understand that.
I just believe we may need to live in an Emergency Department for at least 12 hours afterwards!

When Tom stops moving his levels plummet quickly.
I am incredibly scared about when he sleeps that night.

I also understand that he loves his sister dearly and that we have taught him that diabetes should not ever stop him from anything.
(THIS may be taking that last comment a bit too far though! LOL!).


If you have $10 to spare please consider sending him a positive comment.
He obviously needs it right now.
(Due to our negativity and worry!).

Tom will always be his sister's advocate, beside Scott and I.

I am scared about next Thursday, BUT YET SO INCREDIBLY PROUD!

He just wants to do this for his sister.

 

Tom adores Amelia.

It is the only life he knows.

 

Loving, supporting and keeping his sister alive.

 

If you have some money to spare and a supportive message (that you may even have used for the Good Friday Appeal) please send it to Tommy, at

 

https://goodfridayappeal2018.everydayhero.com/au/2018-l-p-s-ican-challenge-1

 

Thank you.

 

(I will be driving the whole walk and meeting Tom at every "stop". Any positive comments for me on the 4:30am wake up and staying awake through out the day would also be greatly be appreciated!!!!!!! LOL.)

 

Thank you!

Hello Dear Friends,

Thank you.

Thank you for sharing yours and our happiness about Ed Sheeran.

Your likes, loves and comments have been spoken about LOTS!

Thank you for sharing your love, enjoyment and pure excitement about Amelia meeting someone so famous!

But more importantly, someone Amelia REALLY wanted to meet.

We have in all honestly been in shock since Sunday night and in a daze!

Amelia is an AMAZING judge of character and realness.

After watching lots about Ed on YouTube and through other channels in the last 2 years, HE is the reason she finally decided to use her ONE wish in this lifetime of terminal illness.

She 100% knew he was what she wanted to use her wish on.

WHY?

To thank him.

To thank him for all that he does for others.

That is all.

That is all her wish was.

1 wish in life and that is it.


She just wanted to thank him.

Not about her.

One wish and she just wanted to thank him for all that he does for others.


(He does A LOT. Google It).


No interstate trip or Limousine service like other Make a Wish Kids.

Just look him in the eye and thank him for all that he does for others.

That is all Amelia asked.



We met him.



He was so normal.

Soooo incredibly normal (and yet so obviously busy).

But he made Amelia feel important and special and also Tom.

He spoke to all of us as a friend and answered everyone's questions.

But we did not ask for anything.

Just a photo.
Nothing to be signed.

(Unfortunately a fan page on Instagram has stolen our photos).

But we have a memory.
And Photos.


A memory of an everyday guy saying yes to meeting us.


A family battling to pay the bills and make an amazing life for 2 awesome kids with medical conditions.

Cannot improve on that too much more at 43 years of age (for me).


(We have increased our mortgage in $200,000 plus in the last 15 years because of nothing really.

Just surviving on Amelia's special needs, only really, and giving away Amanda's professional career and possible income.).


But you know what?


We will have No Regrets At The End.
We do not care.

This is our life and our situation.

Amanda and Scott made it their mission and will make it happen.
To create no regrets without begging people for help.

They gave birth to these children and we will do everything they can to help them.
It is their unknown fault due to genetics and they will strive to change or improve it.

What a lifetime achievement to add to Amelia's and Tom's list!
Many individuals striving to help them.

Amelia and Tom know they are so incredibly loved and how much we did not know.

An amazing life.
No matter how long.

xxx

Ed Sheeran Part 2

Hello Again!

Rewind to Sunday Night.....

I thought of four more discussions, that I forgot about, within the 6 minutes with ED!

1. My brother asked about his choice in Missy Higgins for one of his support acts.
 "I have always loved her music and have listened to it for a long time. She is a great singer" he said.

2. Ed did not hesitate in putting on the Unicorn horn once we explained Amelia's love of Unicorns.
"Want a photo?!" he asked!

3. Amelia tried to speak to him of his own disabilities, mainly in the past.
He just smiled and nodded his head.

4. Amelia thanked him.
As clear as ever, she said "Thank you for all that you do for other people".
(Sooooooo Amelia. Thinking of everyone else all of the time).

I then helped her to explain about how he has housed children in Africa, visited children's hospitals and has met children like herself.
She has watched it all on the Internet".

(There IS ONE incredible photo of this meeting.....so innocent and relaxed that will be printed and framed forever.
I have tried for 1 hour now to share it, maybe I will succeed in the comments!)


Once Ed left the room, we all stood there in shock.

In total WTF! and OMG!

Everyone had the biggest smile.

We all stared at Amelia and she looked so happy and content.

Was she happy?

YES!

Ed's tour manager came in and asked to look at our concert tickets for the night.

"This is over the other side of the stadium. I am going to organise better for you" he said.

He then looked straight at Scott and said "I have a ticket for you too".
(Scott was never coming to the concert. I rang the manager directly once he contacted me about the meet and greet and asked if Scott could come to that part. Not the concert).

The manager had no plan except for the tickets, he had just been given, in his hand.

To leave the way we came, we would need to turn left outside of the meeting room.
Go back through all the secret entrances and hallways.

The manager stood outside the meeting room for 1 minute and said "Stuff it. Come this way".

We turned right.

We walked through doors and along a hallway.

We walked past at least 4 offices.
Each had at least 1 person in it and computer screens.

One had a sign saying something like "If you are not happy with your backstage pass, then Fuck Off!".

I loved it and wish I had of grabbed a photo, but the whole thing was so surreal!

Suddenly Ed walked past us with a guitar in his hand.
"Excuse me. Sorry guys" he said.

He joined 3 other men ahead of us and an impromptu meeting began.

One of the other people was Michael Gudinski.
They discussed a deal that had not been met by the other party.

My heart swelled that it involved donations to charities and how Ed was not happy the other people were not holding up their end of the deal.

We watched (while trying to look anywhere else but at them!) for 2 minutes until the manager lead us to our new seats.

The manager walked us up the same path that Ed enters to start the concert.
Beside the stage and out to the standing audience area.

He lead us to a wheelchair raised podium in the front standing area.

Amelia and one other could go on it.
We chose Tom to join Amelia.

I did not get the photo of Amelia and Tom that is now ingrained in my mind forever.
Tom was Amelia's plus one.

They were on that podium together with me closely behind.

Ed came out and Tom linked arms with Amelia and placed his head on her shoulder.

It was perfect.

SO incredibly perfect.

It sealed the whole night perfectly for me.

Thank you to everyone on this page, for sharing this amazing journey with us, and with Amelia.

As I have said previously, It does not matter how long you live....... it is about the quality, substance and love that you endure during this time.
During one lifetime.

Amelia has had SO much in her short life and has asked me to thank every single one of you.

She is still on cloud 9!

She met "My Ed".

xxx



P.S

A Journalist has contacted me over the weekend about us.

I am extremely honoured and yet hesitant in responding.

I have my protective little village now and we all feel safe and cocooned in giving Amelia the most amazing life possible.
Tommy's upbringing is also protected and helped by those that are close.

Do we need more media and coverage of our plight?

What is our plight and do we create or help an important issue in disability now?

I just don't know.

Just feel so safe and happy right now and do not want to destroy this incredibly funny, sarcastic and loved home with humorous politics and simple campaigning.

Amelia's wish came true on the weekend though.

She met Ed Sheeran.

Cannot get any better than that!

Thank you to all that helped.

xxx

Ed Sheeran Part 1

HELLO!!!!!!!!!

(I am yelling with excitement BECAUSE WE MET ED SHEERAN!!!!)

Amelia's preparation for the meeting was extremely thorough and every single detail thought about carefully.

Every single item in the hamper had a strong sentimental meaning behind it.
Cat toy and bow tie for his well loved cats.
Maltesers from car karaoke with some famous TV host.
A cat/unicorn pen (cat-Ed unicorn-Amelia)
A Unicorn horn! (No question! Totally Amelia!)
etc

If I was to ever formally be called her slave, it would be the last 48 hours, with the amount she wanted to do to prepare!!!!

Hamper items- check
Hair cut- check
New Dress- check

As we wheeled Amelia out to the car, I had to take a massive breath.
Amelia looked stunning and SO much older!

We arrived at the venue 1 hour earlier than the meeting time.
As many of you know, I am late for EVERYTHING and this was NOT going to be the time to be late!!!!

Finding the meeting point was extremely difficult and after I eventually contacted the manager, he gave us another location that was just as confusing.
When we eventually found him, I was a stressed out mess.
We waited for him the manager to finish his cigarette (hilarious!) and then we began "the long walk".

(Throughout this Amelia was beautifully calm).

The next part was fun!
We felt like we were at Hogwarts (Harry Potter) being led through all the dungeons and hallways to the secret meeting place.
We went through carparks, service entries and basement hallways to eventually be led into a small room.

Phone calls were being made by management and security were quietly chatting.

A conversation about what it is like to work with Ed and how hard it is on family and friends was occurring.

My head was turned to the left as I spoke to Amelia and Tom.
I turn my head to the right and LOOK STRAIGHT AT HIM standing next to me.

ED!!!

INSERT Amanda and how she would respond......
Have a guess?!
Lets discuss my embarrassing moment, shall we....

Ed is exactly the same height as me and his glasses make his eyes look very big.
He is staring at me with that smile everyone sees in the media.

I throw my head back and yell "OH WOW!  UMMM HI".

Yep!
Welcome!

He laughed and hugged and kissed me on the cheek!
He hugged Amelia and shook hands with Tom, Scott and my brother Stuart.

He picked up THE hamper and asked Amelia "What's this?".

Amelia spoke beautifully (hard with A-T) and explained a few items.
There were a few "OMG" and "OH WOW" from Ed.
He was obviously very touched by at least 2 items.

He asked Amelia if it was her first concert and we helped her to explain Bruno Mars on Wednesday night. He asked about Rod Laver Arena and if the concert was good........

INSERT second foot in mouth moment for Amanda......
Because I talk before I think, I chose to speak about how I could not see BRUNO dancing due to all the pyrotechnics! And that concerts are so loud now.
(SHUT THE FUCK UP AMANDA!)

Thankfully I realised I was stuffing up again and reminded Amelia that she had a question...

"Did you really break your leg when you were 6 years old" she asked.

"No" he answered.
"My older brother did, but it sounded better if I said I did in the song".

I reminded Tom that he had a question.

Tom asked "How did you get people to listen and follow you initially?'

"The right people listened to me early on, but did not like me" he said.

"But I just kept trying and kept pushing, never giving up.
I could decide to be an astronaut tomorrow and I promise you, that in 20 years time, I will be in space.
 Hard work ALWAYS pays off. Try and you WILL succeed".

Best piece of advice for Tom.

After Tom's comments last week, I was determined to have a major focus on Tom AS WELL as Amelia.

Tom gave a Melbourne Demons Football Club Football donated by the club proudly.
Ed happily agreed to a photo with Tom and the footy.

He then questioned the successful teams, and suggested Hawthorn, after their win when he was pre entertainment at the Grand Final a few years ago.

My brother showed his Richmond Tigers Tattoo up his entire forearm and he and Scott explained the Grand Final of last year.

Tom said "Our team are up and coming! We are the future!"

Then it ended.

Scott ended with the perfect comment....

"Amelia watches all of your media coverage and enjoys all of your songs in her chair.
Her one wish in this whole wide world was to meet you.
Thank you SO much for making her wish come true.
She calls you MY ED".

He hugged Amelia and I.
Verbally said goodbye to Tom, Scott and Stuart.

After about 6 minutes.
He was gone.

6 MINUTES!

But the whole experience was like the car crash we had years ago.

The whole world slowed and everything was in slow motion.
We all absorbed and watched every single thing......

But then afterwards we all asked each other
"What the hell just happened?!

But then the whirlwind continued.

I will write more tomorrow.

This chicken is exhausted xxx

1 sleep to go

Hello friends,

Tomorrow is D day.....

OR Ed day!!!!!!!!

As I have said on many occasions, I am not equipped to deal with this kid!

It is like she is from another universe sometimes because she can speak the most profound words that it makes you stop and ask why?!
How did you think to say that?!?!

Why are you saying something so profound and mature when you are so young?
Why are you saying something so inspiring and personally directed at someone, when you are sooooo young?!?!

I have a million faults and regularly question why she has been given to me, BUT I also know it is for a reason.
I am dedicating my whole life to her (and Tom) for a reason.

To create the most amazing life that I can possibly give them BOTH.

SHE has a short amount of time with us and it needs to be AMAZING.

HE needs to be not damaged and also live an amazing life.
But HE needs to also develop into an amazing adult.

I am not religious, but that is my purpose.

I am currently undergoing numerous tests for a possible neurological disease for pain and tingling in my body, BUT I know that no matter what, Amelia and Tom will always be the purpose in my life.

Putting all of that crap aside, Amelia looked at me tonight and quietly said...

"I just want to thank him".

"What for?" I asked her.

"For all the nice things he does for other people" she answered.

My sweet, sweet child.

1 more sleep and she will get to tell Ed Sheeran "thank you".

xxx

Post BRUNO Pre ED

Excitement overload here yesterday, last night and today.

Now the countdown is on for Sunday!!!!!


Bruno Mars concert last night was AMAZING!

Sunday with Ed Sheeran will be even better.


Once again I am witnessing the power of human nature and it's pure honesty......

"How the fuck are you getting to meet Ed?"

"Why are you getting to meet him?"

"Gee, you must have good contacts".


I have visably watched people sigh and say "you got another thing?! Really?!".


It is probably better to start with
"Congratulations! I am so happy for Amelia!"

Call me old fashioned, but that is what I think.


I am not analysing situations like this anymore.
I am beyond people like this bringing me down.


Thank you to those that are enjoying this journey and difficult road we are on.

Thank you to those that are feeling the excitement and happiness within as we try to share everything as best as we can.

Sunday will be all about Amelia and Tom.

Amelia and Tom WILL BE MEETING ED SHEERAN!!!

I overheard Tom telling a friend "I won't get to talk to him. It is all about Amelia".

Most of you will know my internal response to this.
It begins with a Melbourne Demons Football to give to him, from Tom.

Now to enjoy the next few days and build up in excitement to such a monumental event.

I know one amazing little girl who cannot wait.


xxx

Post Note.........

(Amanda has already agreed that she will be tied up, in a corner and have gaffa tape across her mouth during the "meet and greet". This is only due to her verbal diarrhoea issue when she is nervous).

Ed Sheeran Part 1

Hello friends,

Today's post is at the opposite end of the spectrum to the previous post!

Both are true, honest and real though.........

BUT this one IS GOOD!
SOOOOO GOOD!!!!!!

Halfway through last year Amelia suddenly asked to "use" her Make a Wish.
She had known that it was just sitting and waiting for her, for when she was ready.

7 years ago......she knew she could use it, when she was ready.

(we all knew she was terminal, but she did not originally)

People were starting to pressure her to use it due to the increased deterioration of her body, but we reassured her to use it at exactly the perfect time for her.

Something that was actually in HER control!

"IF Ed Sheeran or Bruno Mars ever come out in concert, I want to go. I want it to be my first concert ever" she said.

Both announce concerts, within days of each other, for the following year.

We could not choose so we tried for both.

We would never have succeeded in getting tickets if it was not due to an amazing friend called "Kate" for Bruno and my brother, Stuart, for Ed.
Both took hours upon hours of calls and stupid hold music.

AND Birthday and Christmas presents from Poppy!

Anything for Amelia though!
(No regrets at the end!)

Bruno took 2 hours to get tickets, Ed took 4.5 hours (and a broken call button for my brother on his mobile phone!).

After all of that....

"I want to use my wish" Amelia suddenly says.

"Ok. What for?" I ask.

"I want to meet Ed Sheeran".


MASSIVE.
She wants to finally make a decision and use her wish.


We apply online and 2 amazing volunteers come to our house at night time.
They want a variety of wish options.

I am like "NO" she wants THIS ONE only!!!!!

BUT it does not work like that.
You have to put in 3,
because sometimes they are not possible to achieve.

BUT she ONLY wants to use her wish to meet Ed, I explain.

Stiff shit, I am told nicely.

Sometimes they are declined.


The Ed Sheeran wish WAS declined from someone's end and she then felt "no wish then please".
She no longer wanted to use her Make a Wish.

(Make a Wish tried their best)



Make a Wish then moved onto her other choices, which were not as great (to her).
It took her 6 months to choose a new wish.

(we called them back to change the 3 wishes after 6 months).

She ended up making an awesome choice for her wish and it will hopefully occur later this year.
But Ed was always the original idea.


We were still going to the concert/s OBVIOUSLY of Bruno and Ed.

The whole immediate family to Bruno (first concert ever for both kids!).

My brother (a massive Ed fan) to the second one, with me and the kids (no Scott).

All in the matter 0f 5 days!!!!!


REWIND........

Last week, I received an email from Frontier Touring offering "a meet and greet competition".

It required a 25 word response to WHY you should win and a share on FB.

My 25 words was to the number exactly and explained

"My daughter, Amelia, loves Ed Sheeran SO much that she wanted to use her “Make a Wish” to meet him. But it was declined ".

I shared it.
Friends started sharing it.
I shared it on Amelia's Project page....


BUT I applied to the competition they were offering with a 25 words thingo and shared on my personal Facebook page casually.
I DID NOT THINK ANYTHING WOULD COME OF IT!

Friends and associates began sharing and writing their own comments and #tags.

I shared on Amelia's Project Page (which I feel beyond gratitude for people sharing as well!) and the things started happening 100+.

I never expected anything to happen from it.


Jessica messaged me wanting an email address for Ed's manager.

WHO is Jessica?
Apparently she is a long distant relative on Amelia's Project page.

(I have since learnt her close connection and how amazing she is).

Meredith messaged me wanting approval to pass on details of mobile and email address to 3AW and Neil Mitchell.

(everyone knows how awesome Meredith is!)

Then Jessica messaged me while I was cooking dinner.
"Ed's tour manager has emailed you".

I open the email and fall to my hands on my knees.
I start reminding myself to BREATHE.

It said
"With regards to meeting Ed, it will happen at 5:30pm on March 11th".

There was LOTS of other stuff in the email, BUT this is what I almost collapsed over!

I ran into the living room and announced to Scott and Amelia "OMG! We are meeting Ed Sheeran".
(sounds so monotone in writing, but it was dramatic and LOUD! VERY Loud!).

I ran down the back to Tom and announced the same thing!

Everyone went into shock while Amelia posted it to FB.

People start texting my phone "UMMM is she serious?!"

I was the crazy person running around the house screaming OMG, OMG, OMG!!!!!!

I ran across the road to tell our neighbours and get called in to witness their gorgeous 3rd child walking for the first time..............TOO MUCH!!!!!

(Unfortunately I kept dinner cooking and totally burnt it!).



The next morning sweet, quiet Amelia got up and sat in her chair...

"Mum... Am I really meeting Ed Sheeran?" she asked quietly.

I went up and held her hand and said "Yes! Yes you are".

She quietly had happy tears while listening to the song below.

Sometimes it takes a village to raise a child.

THIS village is helping me to have no regrets at the end.

https://youtu.be/2Vv-BfVoq4g?list=RD2Vv-BfVoq4g

And in everyway she is totally perfect to us.

Thank you Village.

I will have No Regrets At The End with all of you helping me along the way.

(I will try photo's, video and LIVE on the night).

xxx