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

Very Special Kids - Annie's Cottage

I have said many times that you meet the most amazing people when you give birth to a special needs child.
This past long weekend was no exception.

After I returned from hospital with Tom, at the very end of last year, I rang Very Special Kids in Malvern.
Amelia, and our family, has been part of their organisation for quite some time now.
They offer many things.
One.... is two places to "get away to".
Our case worker was able to get our names down to stay at a place over the long weekend in March.
Perfect.

As the day arrived, anxiety was building.
The place was 3.5 hours away.
I like MY bed.
We have had REALLY bad experiences staying away from home.
Tom was BEGGING us not to go.
Tom wanted to see his beloved Melbourne Demons Football team play in a town 20 minutes away.
Scott and I were stressed about what to pack and what we needed.
And I have this unusual OCD with cleanliness and hygiene.

Amelia was the only one REALLY excited !!!!

We did not pack what we needed ...... but it did not matter.
We did not have to worry about hygiene....or Tom.

After a very LOOOOOONG drive of Tom asking "Are we there yet?", we finally arrived.

The farm is in the middle of nowhere.
A lovely "older" couple own the 80 acres.
Their names are Peter and Judith.
They live there and two of their daughters also have homes on the property.

A separate driveway led us to "Annie's Cottage" named after Judith's grandmother.

As we parked the car, Judith walked over to welcome us.
As she showed us through the house, Scott and I were gobsmacked.
It was seriously like a display home.
It had everything we could have wanted and more!
Flat screen TV's in every room, playstation, Wii, shower chair for Amelia and a split system aircon/heater in every room.
It was beautiful.

Outside, Judith showed Tom all of the activities available for him.
He was beside himself excited.
As well as a cubby house and playroom, there was also a shed full of bikes and helmets.
The family had even developed makeshift ramps out in the paddock for the bikes!
There was also basketball, football, cricket and a huge playground.

Two nights was NOT going to be enough!

There was a DVD left on the entertainment unit for us to watch about the cottage.
It had been available to VSK families since 1994, but unfortunately due to an electrical fault, it burnt down a few years ago.
Enter "Random Acts of Kindness" hosted by Scott Camm.
While Judith and Peter were whisked away for the weekend, one of the daughters supervised the whole place being rebuilt.....and some.

Who pays the upkeep, electricity etc etc etc ??

Judith and Peter.

Who offers time away for families with a very ill child?

Judith and Peter.

They have never even had a child that needed Very Special Kids.

We travelled to Lakes Entrance (so much like Noosa) and Meetung one day and spent the rest of the time reconnecting as a family.
If Tom had it his way, we would have had a 3 day family cricket test, but we ALL got something BIG out of it.

You even end on a bigger HIGH.
As Judith and Peter come to say goodbye to you, they take you to a "Magic Closet" that is full of donated gifts and are told to just "choose what you want!!!".

Will defintley be asking to go back again........for longer.

 Tom's Bed

 Our Bed

 Our Farm Boy

 One of the gorgeous daughters took us to feed the animals

 Lakes Entrance

 Meetung

 Tom and Peter

 Our handprints, left as a reminder that we stayed there.

 Judith with the kids

 Pure and utter happiness

xxx