Date Night

Hello Everyone.

Last night Scott and I went out for a "romantic dinner".

A very kind person insisted on taking our kids to the Drive-In.
(I am learning that I cannot relax and enjoy unless the kids are having "equal, if not more" fun than me).

Last night we arrived for a very rare (once a year) dinner at a very rough part of Frankston.
The entrance gave no clue to what was inside.

As we were taken to our table, we were blown away with the atmosphere inside the place.
Very Thailand and Balinese.
The menu was extensive.
So much to choose from!

I checked us in to this amazing destination on Facebook.
It was worthy of mentioning.

Scott and I were really enjoying ourselves.
We spoke about life, our different situation with Amelia and Tom, his 40th Birthday Party and the fact that we cannot go out.

No one will can have our kids and contribute to their amazing lives.

Suddenly all of the other diners went silence.
The waiter said "I will turn the volume up".

Scott and I stopped talking and looked around curiously.

Loud speakers behind our table kicked into gear.......
"My name is Forest."
"Forest Gump".

I noticed a large projector screen in front of the majority of the patrons beginning a famous movie.

I looked at Scott wide eyed, because the speaker noise was deafening.

"Life is like a box of chocolates" we hear through the speakers.

Scott and I lost it laughing.
We seriously looked at each other and laughed in disbelief.

We have found THE most romantic, beautiful place to reconnect as a couple and.....
IT IS TWILIGHT MOVIE NIGHT !!!!!!

Our record of bad luck was continuing and it was HYSTERICAL!

So as Forest Gump continued, Scott and I continued our married converstaion over the dialogue.
(Scott kept saying "hello" as I diverted my eyes from the screen saying "I haven't seen this movie for so long!).

Just how our luck goes really.

Us and the kids had an awesome night !!!!!

Look at the bright side people.

xxx

D Day

Hello Everyone.

It is with a very tired body and mind that I come to you.

Scott's 40th Birthday Party is tomorrow.

We have spent the last 5 days preparing for this event.

We have tidied, vacumned, mopped, swept, blower vacked, weeded, decluttered, shopped and used a high pressure guerney.

The children have been magnificent.

Amelia : "I am bored".

Tom : "I played footy and thought that I would come and watch a DVD with Amelia, to keep her company.
I watched barbie mum.
I WATCHED BARBIE !! ".

BUT they wanted a party WITH their daddy.
This is the ramification of that.

They may have laughed so much that Amelia dribbled all over her top.
She may have threatened to "wet her pants".

He is a GOOD brother.

"I looked after her" he said.

Truly. Honestly.
He is a good kid.

Thank you to Mardi, Kirsty and Fiona that helped us elevate the boredom.

We are now finished the clean-up.

We have approximately 90 people coming tomorrow night.
Approximately 50 are saying they will be here till morning.

Oh Dear.

There are also a few surprises for Scott.
SHHHHHH.
I cannot tell you.
He now reads this Blog!

So many friends from past and present to celebrate my marvelous husband with.

Yes.
I will be giving a speech.

Have an amazing night Scott.

See you on the other side everyone.

xxx

OMG.
Who would organise a massive party at home?
Oh yes. That would be us.

Scott's 40th.
(the man who has not written an entry on here YET!).

Last minute?
Yes that would be us!

Our garden and house is a MESS !!!!

After VERY expensive invites..... (text message) ..... we have A LOT of people coming.

Originally HE wanted it to be an adult only event (translation - lets get drunk) but the kids would hear nothing of that!
Amelia and Tom EXPECT to be there.

So now, we have many "families" attending.
Many children being babysat after a certain time.
Many children leaving at a decent time.

Not ours !!!!
Oh no.
They will be attending and being assisted to bed at some un-godly hour!

At least we will have MANY people here to help us!

Today was Day 1 of  "Operation of Clean Up".

Our "green bin is full" (and so are 2 of our neighbours!)

We have done the front yard only.

Exhausted.

We will do this.
We will achieve the impossible.

(MINE IS AT FRANKSTON RSL IF ANYONE WANTS TO COME - IN OCTOBER! - NOT AT HOME)

By the time Saturday rolls around, Scott and I will be rocking in the corner !!!!

PLEASE learn from US !!!!!

Cannot wait to get drunk on Saturday.
(Please do not look at ANYTHING I am may be tagged on Facebook).

xxx

My 40th

Two posts in one night !!!!!
BUT my mind is in overdrive.

Scott is in the middle of planning his very sedate 40th Bithday.
It has me thinking about mine.

It is in 6 months.

Everyone knows that I have never had closure on Amelia's Project.
It ended so abruptly.

BUT the love in the room on those nights was overwhelming.
People traveled from far and wide to FEEL that LOVE.

I want my 40th in that place.

I want people that have supported us from FAR and WIDE to come.

I want everyone I have ever known to come.

Even the people I have never met, face to face, to come.

I want to get someone really fun to host, like a Hypnotist or wacky Trivia Man.

I want Amelia and Tom to come, just like they are to Scott's.

I want to celebrate Amelia here for my milestone birthday.......with me.

I want a MASSIVE Birthday party and a MASSIVE  celebration of our family, while we are all together.

I will do it.

You are all invited.

Keep October 2014 FREE.

Please Come.

Amanda (39 years of age).

xxx

Blood Test and Furby's

Hello Everyone.

Just had my flu vaccination and it HURT!
Which leads me into tonight's post.......

Last week Scott took Amelia to a Royal Children's Hospital appointment for the first time on his own.
It was a very big deal and part of his role as house husband.

"Who are we seeing?" Amelia asked.
"Immunology" I said.

She started crying.

Last January we saw our head guru at RCH.
I mentioned that I was concerned that no one was monitoring Amelia's overall health.
Children with Ataxia Telangiectasia are 1000 times more likely to get cancer and any damage created inside the body from other infections can be irreparable.
For example, a cough can scar the lungs permanently.

I requested that we need someone, or a team, overseeing anything that may appear, without symptoms.

She made an appointment for us to see someone in immunology.

We visited this department 2 years ago and the reaction of that visit could be heard around the whole hospital.
Amelia would not accept reason and focus on getting through it.

To our family it is an area that we have since avoided.

How can you test the immune system without blood tests?
How can you protect the immune system without needles?

Amelia has my "medical condition", where the anxiety and panic take over.

Anyway about last week.......

Amelia tried to get out of it the night before.
Scott questioned why we needed it.

They went.
I went to work........anxious.

As I was leaving, I said to Scott "If you need it, she wants a FURBY. Tell her she will get one".

The appointment went extremely well.
Scott said the head of immunology was called in.
They were appropriately excited to have a child with A-T to monitor.
They were going to create a "team" so that Amelia could be closely monitored on a regular basis.

But then the word was said.

"BLOOD TEST".

Amelia heard.
She started crying.
(from previous experience there is no use applying numbing cream. It is more time to build anxiety).

Now this is where the story gets blurred.......

She got a furby.
She was promised a furby.

AT WHAT STAGE WAS SHE PROMISED AN $84 FURBY ??!!

I am imagining it was as soon as the tears started.

(This is said tongue in cheek - because the day apparently went smoothly. Blood test days NEVER go smoothly).

Jump forward to getting home.

"I am getting a furby" Amelia says with a massive smile.

"WHAT?" says Tom.
"I have 2 needles a day. What do I get?".

Tom is NOW ALSO getting an $84 Furby.

Both children now have a Furby each.

Who is taking Amelia to immunology next time ??!!

Yep.
I think they are proud of themselves.


Finally....
Tom arrives home tonight and talks about a teacher thinking his "Arm Farts" are awesome.
Tom has to demonstrate his talent to the class.
Teacher says he will stand up on stage at next assembly and play the National Anthem through "Arm Farts".

So Proud.
So Proud.

xxx

Assumptions

Today consisted of an interesting discussion with someone that spoke of numerous assumptions that I feel I need to address before I attempt to fall asleep.

The words "Walk in My Shoes" comes to mind immediately, but please let me explain this post further....

People may read this blog or my Facebook or Amelia's Project Facebook and connect with our lives.
Others may just read it to scoff and gossip.

The latter group is a group we would not prefer, but it is something we cannot stop.

Call it from the horses mouth, but here goes.....

* I may not have really wanted to return to the workforce, but Scott deserves as much time with Amelia as I have had.
* Why can he not stay at home with the kids?
* Does there need to be a medical reason for him to do it?
* Do people need to gossip about WHY he is staying at home with the kids?

I can assure you......... he HAS NOT had a nervous breakdown, as was passed down through a grapevine to me tonight.

WE have decided that he deserves as much time at home with the kids as I do.

PERIOD.

Staying home IS NOT gender specific.

I find it very disappointing to hear that "the grapevine" was people I grew up with.

Please do not make up lies.
Please do not assume.

Just ask me.
I am an open book.

Last week, Scott was able to attend one of Tom's assemblies for the first time.
Today he took Amelia for the first time on his own to an appointment at RCH.
He experienced the horrible reaction, from Amelia, when it is mentioned that she needs a blood test.

He is a good dad.
An amazing dad.

Yesterday we celebrated being a couple for 24 years.
We were 15 years old when our relationship began.
We have moulded into one over the years.

The comment was also made...... "raised money for YOU".

The money was not raised for us.
It was raised to give Amelia an amazing life.
Attending a gala night or selling raffle tickets does not give you permission to bitch and gossip about our family.

Please leave our cyber world if that is the only reason you are here.

Come and spend a week with us.....
Walk in our shoes.....

You may see the struggles and intense care of a 10 year old and 7 year old, but you will also see happiness, love and dedication.

We are not bad or mentally ill people and I do not have time to argue such assumptions.

Tom and Amelia need us so much more.

xxx

Update

Hello Everyone.

It is funny with my new working life, that the second I have a moment of rest, is also a moment I get to write on here!

I cancelled beautiful friends to come for a BBQ tonight because I literally am exhausted.
Any working person with children is !!

Anyway here is an update .......

* We made new friends last week.
- Amelia was invited to a party and sleepover for one of her new friends at special special.
-gorgeous child and gorgeous mum.
-we stayed at a "strangers house"....... their own personal space, so their daughter could have an "awesome 10th Birthday". Amelia and I slept in the mothers bed ! (on our our own of course!) 
So happy that we have made some more NEW friends.
I can honestly say that I have never been to a party where it was a competition to see who could race around the kitchen bench the FASTEST in their electric wheelchair !!
-Biggest thing I learnt that weekend? Being a stranger learning about a child with a disability. With an open mind, you learn SO much about their capabilities AND their restrictions......especially while watching the parent.
-Just like ANYONE with Amelia....really.

* Tom is administering his own needles.
- yes you heard that correctly.
- a 7 year old is now giving himself insulin morning and night (under adult supervision).
- he even "draws" the insulin himself into the needle.
- he keeps saying poo, bum crack and wee head ALL the time.
- he declines food that he does not feel is suitable to his "levels" on a regular basis (even a Macca's breakfast?!).

* Scott is doing reading for Tom's class.
- he is about to turn 40.
- he is JUST learning where the vacumn is kept.
- he makes a wicked roast.
- he gets cross if you do not put your rubbish in the bin.

* Amelia is full of attitude.
- We all love it.
- She must be the only child in the world where the parents have to walk away and laugh about "what she just said".
- the one liners are constant.
-people are STILL astounded that she can TALK - OMG SHE IS IN A WHEELCHAIR!
- her condition is getting worse - SURPRISED? It is degenerative.
- but she still has a brain, and can think?
- OMG. Fall off my chair!

* We have had to defend both of our children recently
- due to their VERY different personalities and capabilities, do not be surprised.
- after we assess the situations ourselves (or observe the actual incident) WE WILL GO IN TO BAT.

Personally..... I have a whole new group "to defend and go in to bat for".

My Kinder group.

There are so many special needs and defenceless parents "to go in and bat for"............

This is my purpose in life.....my whole families.......

xxx