My Pink Princess

 Explanation for my pink princess below....

As always a lot has been happening around here.

A lot.

But today I would like to talk about Amelia.

It is Amelia's 10th Birthday next week.
Her disco party is on Saturday.
It will be small, (considering the amount of children that have attended her parties in the past), but she is in total control of this one.

For someone who is developing into a young woman she is slowly changing.......
It is a good change though.

I have enjoyed planning her party with her.
She tells me what food, I either order, make or buy it.
She demands I take her to the shops to look for party decorations.
I wheel her chair around while she constantly yells "Wait! Back!".
Amelia will take something off the shelf, put it in her lap or hand it to the slave (me) behind her and then demands we go pay for it.

Today I mentioned that I will go and look at the party shops that her wheelchair cannot get in to.
"But.....I may not like what you get" she said.

Total control.
It is funny and such a change for her.

Two years ago she questioned the mainstream school she was attending whether she could get permanent pink highlights in her hair.
They said no. It is against the rules.
She pointed out the funky prep teacher with pink hair.
"You are a child. She is an adult" she was told.

Last night the beautiful Jade Price came round and put pink highlights in her hair.
It is part of her birthday present from Scott and I.
(Amelia cannot wait to go and show the "old" school that she has it!).

It was an experience that I had not prepared her for.
She could not understand the "foils", the time it takes and the procedure that needed to be followed.
Due to her confusion she worried, became grumpy and complained.

Finally when it was all washed and dried.....she smiled.

She loves it.
Scott and I love it.
Tom was even full of praise!

After much discussion, thought and advice, the presents are even changing.
Money, gift vouchers, perfume and earings are all top of the list.
Itunes cards, music and tickets to the Aquarium are also popular.

Amelia is laying in bed for 2 hours every night this week struggling to fall asleep.
"I am just so excited about my birthday" she says.

So to recap on the family as a whole......
Tom begged Scott to shave his head recently (he is now a skinhead), Scott has decided to relive his youth and repierced his earing through last night and my daughter has bright pink streaks through her hair.

I may need to get with the times..............
I am the only one not being creative and eccentric now!!!!!



xxx

My baby

Tonight I have written many things about what has happened in our lives in the last few days.

Nothing seems worthy to describe it.

Today something happened that summed it all up for me.

After many hours waiting, we began filming for a nation wide TV commercial.

25 people and many set props.

I was moved away from the front of camera........to behind.

Amelia was alone and delivering the script by herself.

I watched in awe.

What I had stumbled with minutes earlier was happening easily to my little girl.

A natural on camera.
A natural star.

Watch out for Amelia on a commercial in 3 weeks.

She is unbelievably awesome.

xxx

Future TV star ????/

Yesterday it was suggested that I give a "casting company" a call.
It had advertised for a child with a disability.
They needed the child for a TV commercial.

I rang the company to enquire further, and then suddenly she had booked us in for an interview today at 10am !!

There are other people being considered for the same role.
It would require about 6 hours of time next week.
It pays a VERY reasonable amount of money.

Amelia and Tom had very different reactions towards our adventure today (even though Tom was going to school).
Amelia was full of nerves and asking many questions like "do I have to talk?" and "will there be cameras?".
Tom was trying to over ride the conversation with 'I want to go!" and "I want to be on camera!".

My two polar opposite children.

Amelia was a lot more comfortable about the idea today.
Even questioned my choice of clothing for the day......
"Are you wearing that?. Don't we have to look pretty?".
(Join the brigade Amelia, that shakes their head at my wardrobe !!!).

Amelia really, really relaxed once we got there.
Something happened to make her relax though.
Story ???
Ok.....read on........

After being welcomed into the office in the city, I was asked to complete some paperwork.
Amelia's name, address, clothing size etc.
Amanda's (ME) name, address, clothing size......
CLOTHING SIZE?

I walk up to the reception desk and ask why my height etc is needed.
"Because you are auditioning for the commercial too".

WHAT ??!!!

No make up.
Eyebrows looking like the National State Forest.
CRAP !!!

Anyway.......
Amelia is watching my reaction in HYSTERICS!
She thinks it is hilarious that she is not the only one nervous NOW!\

I also had to "facebook" the employee a family photo because the WHOLE family may be needed !

Amelia is relaxed, happy and smiling continually.
Me? Well I had to take a few deep breaths and then I realised how fun this experience could be.\

Move on I say.

So we answered questions.
We introduced ourselves.
We had FUN !

I think that the waiting room was just as exciting (and stories from inside!).

A very famous commercial was being cast.

The personalities and money amounts being discussed...........

WOW.

Totally different world.
Amelia was even able to understand what was happening around us.

That is our touch with possible stardom for 2013 I think.

We find out if we have been accepted for the "role" on Friday.

I would say fingers crossed but the adventure today has left us both so happy anyway.

                                                                       
                                                                       On our way!

                            Do you think that she fulfills the possible role of TV Star.....Diva maybe ???!!!!!!

                        No photo's / selfies of the National State Forest are available at this point in time..........

xxx

Mothers Day 2013

Dear Family and Friends (inclunding Online friends I have never met!),

There are many reasons why you may read this page.
There are many reasons that you may be a member of Amelia's Project page on Facebook.

Either you were already part of our lives - before diagnosis- or you have been drawn to "our journey".
Some people we have met naturally through education and sport.

Either way, you are part of our lives.

You have laughed with us.
You have cried with us.

Many of you have lived a lot of this experience with us.

The "community support" in my home town has been phenomenal.
It is something that took me a while to get used to.
Other people taking my child to school.
Other people picking them up.
Letting the kids "sleep over" earlier than I normally would.

All the things that I was so protective over a few years ago.

But today is Mothers Day in Australia.

At the very beginning of our journey, the outpouring of grief for our family was not only for the child that will have a shortened lifespan..........it was also for the mother.

ME.

It was for the father and the younger brother but it was also all of my friends, that were mothers or knew the priveledge of having a mother, that began such a wonderful support network.

Even though Amelia's Project has ended now, I still have a close group of friends around me.

These people quite often step in and "surrogate mother" my children when I am not around or have too many commitments at once.
(and Scott obviously, but I am writing this from a mothers daily duty point of view).

They may be teachers, friends or sporting coaches.
They may have been in our lives forever or appeared recently and really "clicked" with us.

They are so important to our family in our daily lives.
They are the ones you can "call on" when you need help.

In our situation, we need those people.
WHY?
It is hard to explain......
To keep us sane, to make sure everything runs smoothly and to present many wonderful people to our 2 children.
To show them a variety of people and situations.
People that like them, people that love them.

People that will help make sure they have an "amazing life".
People that also accept us with no judgement, ulterior motive or expectation.

Some of them have been there consistently since the beginning.
I hope that I am the type of person that will always be there for them too.

They know who they are.
They know we are indebted to them for our daily living.

To all mothers today reading this......

Happy Mothers Day.

Just remember, we are Mothers everyday and we are very lucky.

xxx

The bigger picture

A little girl running ahead of me into school.

Hard to believe that was Amelia now.

So much has changed in the last 2 1/2 years.
She can no longer walk, let alone run.

Makes me scared about what the next 2 1/2 years will bring.
I am too petrified to think about 10 years.

Sometimes the weight on my shoulders is too difficult to try and process.

We try so very hard to do our "very best", but there is always going to be the prognosis for the future.

She will slowly disappear in front of us.

In 10 years there is a BIG possibility that she will no longer be with us.

Our life.......her life has turned out to be incredibly unfair.

 

Sometimes "coping" does not seem enough.

 

xxx

Would the REAL Amelia please stand up.

Hello.

The Amelia I know has kind of gone.
I cannot find her.

The Amelia that I currently have had her ears pierced last week.
Everyone knows that Amelia gets hysterical at even the thought of pain.
Taking off a band aid makes the neighbours think we are assaulting her!

During the week Pa (Scott's dad) suggested that he could pay for her to get her ears pierced for her birthday in a few weeks.
After much confusion, (because she burst into tears and sobbed that she wants to get it done), she became very excited and determined to get it done.

I may have been heard to suggest that maybe this much determination needs to go into getting needles and blood tests!

After boasting to everyone at school the following day that she was getting her ears pierced she arrived home on the bus with anxiety levels at fever pitch.

I confirmed that she wanted to get it done but she was petrified of the pain.

So.........I put numbing cream on her ears (apparently it did not work), gave her nurofen and we arrived at our favourite chemist around the corner.

Amelia obviously did not realise the actual pain that ear piercing causes.
After discussing the difficulty of getting two ears pierced simultaneously with Amelia's constant head tremors and movements, it was decided to do one at a time.

She was almost left with just one ear pierced !!!!

The desperation to get away from our friendly pharmacist to complete the second ear definitely showed marvellous determination.

After many tears and admiring in the mirror, Amelia revealed two hours later while sobbing "It hurt so much but they look so pretty".

Amelia is also changing from my angelic, well behaved child into ......... well someone with a lot more spunk.

This week Scott was assisting her with a task.
As he was helping her she said rather aggressively "I know how to do it......you DOUCHEBAG".

Douchebag ??????

Scott and I launched straight into reprimanding this behaviour but I did have to keep leaving the room so that I could relieve my shock and laughter.

Finally...... Amelia's 10th Birthday.
In a few weeks Amelia will be entering double digits.
My concern is that she has become birthday party planning obsessed.
Decorations, invited guests, food and presents are currently constant discussions.
The middle of the night she gets an idea and has to wake me to tell me!
No "good morning" first thing in the morning......no...... it is another idea to add to her LISTS.
There are lists everywhere.
I am expected to drop everything when she wants to discuss her birthday.

Recently we attended a "disability coffee morning" on one of Amelia's curriculum days.
Suddenly the gorgeous girl employed to entertain the kids approaches me and says.
"Hi. Amelia said she wants a disco party. My friend does disco parties for a business. Can her and I come and do Amelia's party?".

Um.......yes.

Amelia had won her over that much in that short time that this stranger wants to GIVE Amelia a disco party !

Below I have posted a link to this business.

http://www.boptillyoudrop.com.au/

Alicia and Mieke are the angels coming.

Must go, Miss Amelia is requesting (demanding!) we ice the cupcakes we made earlier.

Speak soon

xxx

Update Number 59372618

Hello everyone.
Long time no speak.

At the moment I am suffering a post hangover.
I think that a POST hangover is much worse than just the hangover.
The post hangover means days of tiredness and feeling rundown.
I have a sore throat and a small ulcer on my tongue.
I just want to sleep.

But I am in recovery mode from an awesome weekend.
So many laughs, drinks and food.

Now... do not fall off your chair BUT I am actually going to do un UPDATE on Amelia.
I know...... funny I would actually do that.
But considering the page is in her honour, I thought that I had better!

Amelia is now in Term 2 at her special school.
After having NO days off last term, she has already had 1 off in the last fortnight.

She is very tired at the moment.
Exceptionally tired.

I have begun looking at her food, drinks and vitamins again to see where I can help her have energy like she did last term.

She is not sad, just tired.

Her appetite is not as BIG as it was last year.
I am happy about that.
Her weight gain concerns me.

But it is obvious that she needs more energy and I cannot see what was different last Term compared to now.

Amelia handled my operation really well.
Watching mum sleepy with bloody bandages on could have been upsetting but she seems to have coped with it really well.

She likes to "whisper" to me at the moment if she needs to speak her opinion.
Recently Tom was upsetting her.
She signalled for my ear......
"Tom is a little shit" and then smiled at me sweetly.
I actually bounced backwards in shock !!
We do not swear/curse in this house in front of the kids so I did not know what to say!

The relationship/s with her boyfriend/s is still in full swing.
They adore each other.

We used the hoist last night to put Amelia in the bath.
She has not had a bath for months because we can no longer lift her in.
Last night was hysterical.
Amelia hanging in a hession sling, floating along a ceiling track, giggling loudly while naked.

Scott and I can no longer lift her though.
I have just seen a physiotherapist and am sitting here with a heat pack on my lower back.

Amelia is still extremely happy (despite the tiredness), cuddly and FULL of ideas for her 10th Birthday Party in a few weeks.
I have got pages and pages of what she wants at her party !!

Over the last couple of years, I have learnt that bigger is NOT better for Amelia.
Too many people, too busy, too loud and it is too overwhelming for her to handle.
With what is happening to her brain, she can only process so much.
So I may have the lists of ideas but I will still minimise it to what she can handle.

Mood swings have started occurring.
I find it very difficult to disguise my laughter with some situations recently.
She has been showing a lot of spunk !
But there have also been times when I have had to "speak" to her for being rude to people.
Shocked?
I was !!!!

Music, disco and singing are Amelia's favourite things at the moment.

She likes to sit in a room with the lights out, disco ball on and demand which song she wants from her CD player!
Then she will sit there and sing.
I think that she may be pretending that she is on "The Voice".

Talking of which.........
One night recently we all sat down to watch "The Voice".
It has become wonderful family time.

IT WASN'T ON.

We were all devastated so Tom said "Lets play it".
Scott, Amelia and Tom sat on the couch with cushions on their laps (buzzers).
I sang "I had the time of my life" and was fortunate to get them all to buzz me.
I had to introduce my self and say my name.
Seal (Scott) then said "I felt that I really connected with you then. I would love to have you on my team".
Ricky Martin (Tom) jumps out of his seat and says "I know that I am not meant to do this, but I will do anything to have you on my team" with arms waving, an intense look on his face and even the Spanish accent !!!
Every moment, every word by Ricky was played out by Tom.
Hysterical.

1 hour we "played" this for.

And when Amelia had to choose which team she was going to join, she placed her hand on her chest and said while fluttering her eyelids "I have decided that I am going to follow my heart". (everyone looked at Joel Madden - ME).
 "I am going with Seal".
Gutted !!!!! while Seal jumped on Amelia yelling WooHoo !!!!!!

Do you think we may be watching too much of The Voice ?????

xxx

P.S. In the 27 months I have been writing this blog, it has been looked at over 50,000 times.
Thank you for travelling through this journey with us.