Emotional Morning

Recently I thought that the increase in my medication was not allowing me to cry..... at all.

Today I realised that is not the case.....................

Amelia sat sadly on the couch waiting for me to take Tom and her to "mainstream" school today.
Friday is the only day she attends her grade 3 class there.
I sat down next to her and casually asked "What is wrong?".
After some TLC, she looked at me sadly and said "I want to go to (special school) fulltime".
"Ok. Decision is made then. If that is what you really want, I will organise it today" I answered.

Then I asked "Why?".
"Because all of the kids there are like me" she said.

Insert first emotional moment of the day.

We rang Scott and spoke to him about it.
I loved how his response to Amelia was enthusiastic and supportive.

When we arrived at school, I told her teacher and aide that "Amelia will be attending (special school) full time next term. We will finish the last few weeks of this term off here".

Then I went and told the Principal.

Thankfully all the staff were understanding and supportive of the decision.

After reading with Tom's class, I had to go and ask Amelia's teacher if I could bring in Scamp (one of our dogs) for her show and tell.
It was something I had forgotten earlier.

As I entered Amelia's classroom I chose to go and tell her that I needed to organise bringing Scamp in.
As I stood next to her wheelchair and waited for her eyes to look at me, I saw great sadness.
She looked at me, reached out her arms for a cuddle and started crying.

After my natural reaction of "What is wrong?", she looked at me and said.....

"I do not belong here".

Suddenly the world stopped spinning.

Staring at her with tears building and my mind going into overdrive, I decided to do what any mother would do.
I was going to take my little girl home.

As I told surrounding staff members about my little girls "thoughts", they were visibly fighting emotions too.

As I pushed Amelia past 3P coming back into class, many of the class were worried and verbally expressing concern that "Amelia is crying".

As we climbed into the car, my own tears started flowing.

"Why are you crying Mum?" Amelia asked.

I looked at her through my streaming tears and said
"I never want you to feel like you do not belong. Just because you have a wheelchair and A-T does not mean that you are less a person. Thank you for telling me how you feel so we can fix it for you."

xxx

Time and changes

It has been a long time between posts.

While we wait patiently (unfortunately Amelia does not know what this word means) for the electric wheelchair and car to be converted we have experienced what can only be described as another decline.

Amelia can not "safely" walk now by herself.
We have to feed her 70% of the time.
We can no longer leave her alone while eating due to choking.

This morning while I was having my shower I heard lots of noises in our bedroom.
As the doors slowly opened and Amelia crawled in, I realised she was unable to walk at all.
She laid on the floor smiling and talking to me.

Recently I said how well she was doing........well that is not the case anymore.

Rollercoaster.

Tom approached her aide at mainstream last Friday and requested Amelia be taken to the canteen at lunchtime.
He wanted to buy her a hot chocolate with his "tooth fairy"money.
When apparently a child called her names for accidently spilling it, Tom reacted immediately in defending his sister.
I can slowly see the beautiful human being he is becoming.

Finally ...... life.
I encountered a "hurdle" recently.
It involved friends, what is appropriate behaviour and a very strong belief of mine.
I had tried many ways to handle this situation.
I made a firm decision (with the support of others) that affected many around me.
I am disappointed and ashamed of the ramifications of this decision.
My own behaviour and that of others is something to analyse and learn by.

I have lost friends,
 how many ?
 I do not know yet.

It was their choice to "walk away" so now it is my choice to "move on".

xxx

Amelia's Project Night PART 2

I would like to begin tonight with a question.......

Why under such stress does Scott lose a massive amount of weight and I put it on ???!!!
So many people said they did not recognise him on Saturday night because of the amount of weight he has lost.
Is there any board of directors that I can possibly file a complaint with and have this matter addressed immediately ???!!!

In all seriousness, thank you to all that attended, donated and helped.

Some comments I have heard over the last few days were.....
"It was even better than last year"
"The atmosphere was so relaxed"
"I loved everything about it"
"Is Darren single?"...... (don't worry Di, I said no!!)

After the final count of money it was discovered we had raised $19,790.45.

Unbelievable.

The Kia (new car) arrived at the local Mitsubishi dealership last Tuesday from overseas.
It has now been transported to the wheelchair conversion company in the city.
When they have finished with it, Amelia will be able to drive her electric wheelchair straight into the back of it.
It will have a "docking station"and connecting bolt under her wheelchair so that we do not have to strap/seatbelt the chair in every time.

The car will be ready in approximately 4 weeks.

The electric wheelchair has been ordered BUT because the little girl wants "hot pink" it is coming from America.
Estimated arrival time ?
4 weeks.

So I guess everything will be very exciting around here in ....... approx 4 weeks !!!!

There are waaaaay too many people to thank for Saturday night so I will name just a few....
Darren our MC.
Belinda a major organiser of all donations, all 3 DVD's shown on the night, and organisation for smooth running on the night.
Michelle for organising tables, tickets and the RSL.
Peter for donations and the RSL booking.

There are many other people that helped in many other ways.
I will mention them in Part 3 !!!!

I strongly suggest that everyone have a look at the "Friends and Family" dedication DVD on Amelia's Project page on Facebook.
There are photo's of so many of you that have supported us...........

xxx

Amelia's Project Night PART 1

WOW.

Amelia's angels organised another amazing night last night.
They also all worked to create a smooth running and fun night for all.

We do not know the money amount yet but will be able to announce it by Thursday.

As many of you know though, Scott and I appreciate the support and love in the room MORE than any amount raised.

It is going to take me a little while to recover from the last week so I am going to go to bed early tonight.
I thought I would cut and paste my speech on here for those that may be interested.
I will speech more about the night during the week.

Goodnight.
xxx

MY SPEECH
Saturday 4th August 2012

It is with much love in my heart that I welcome every single person in this room tonight.

My name is Amanda and I am truly honoured to be Amelia and Tom’s mother ….. and Scott’s wife.

You have all chosen to attend a night for OUR daughter.

You have paid $60 to come and assist her not only have an amazing life but also to assist us in purchasing the necessary equipment to make her life easier.

You will also experience a night to remember because the same way this night has been planned is the same way Amelia’s Project began.

It began with friendship, love and kindness.

But the true meaning of an amazing life is happiness and fun.

While we endeavour to ensure Amelia’s daily life is full of happiness we also realise that it should be the same for every individual.

Please relax and enjoy yourself tonight and drink WAAAAY too much.

Last year, many of you came here to help us take her to Disneyland.

You have just witnessed some pictures of us at the “most magical and wonderful place on earth”.

I can assure you all that it did live up to its reputation.

Some people were worried that we may encounter disappointment.

I can assure you, that it was never the case.

(even when Tom vomited all over Scott and I on the plane)

Because of everyone in this room last year we were able to experience the most amazing holiday as a family.

To create memories that WILL last a lifetime.

The smile and happiness projected from not only Amelia, but all of us, will stay in my memories forever.

After our beautiful night last year, I was approached by someone who attended.

I had attended High School with her and had not kept in contact since.

She messaged me on Facebook and said…….“My husband walked away from your night and immediately began planning to remodel  your 2 bathrooms. He is a builder.  He now has a team that would like to donate their labour to creating 2 bathrooms suitable for a hoist and a wheelchair”.

So while we were in America they developed the most amazing bathrooms…….

The rest of our house looks incredibly dated now !!

To Jenny Taylor and Mark O’Dea, we will always be grateful for what you did for us.

The words “Thank you” will never be enough.

Amelia’s Project began out of a group of friends, both past and present AND I can honestly say now……future friends.
It was a group created from friendship ….. kindness …… and support.

It was a group of strangers ….. but all known to me ….. that wanted to join a group to assist not only the money pouring in but also the little girl in the middle of it all.

Amelia’s Project is about Amelia.

Full stop.

Amelia WILL have an amazing life , while also getting all the necessary equipment she may need……..

But in the end there will be no regrets.

Amelia’s Project is about a life with NO REGRETS.

If ….  and when we say goodbye, I want to be proud of what we were able to offer her…….. as a united group, not as just a family.

Every single person in this room ……… should….. and would be proud of their contribution.

Amelia’s Project Committee and it’s helpers can never receive enough thank you from our family.

In the next speech of this evening you will hear about each individual BUT I know the person talking will not thank herself.

Belinda Plunket has planned this whole night with Michelle Clark. Belinda is our rock, event planner, time keeper and overall organiser.

Her love for Amelia is evident and my love for her is indescribable.

I do not know what to say except thank you from the bottom of our hearts.

You are one in a million and I am so lucky to have you as a close friend.

May I also take this chance to thank my dad, my mum, Scott’s dad, Scott’s sister Jane and my brother Stuart.

Your support has been beyond describable and we thank you for standing with us all through this.

And finally I would like to address …… YOU.

Your own person sitting there in your chair.

Live in the moment.

Appreciate every minute of every day.

Scott and I stopped looking into the future 19 months ago and now accept we will be elderly before we pay off our mortgage.

Do we give a shit?

NO.

We have Amelia NOW and we are going to enjoy every single second of that time.

Much debate happened recently over a DVD that my cousin and I were creating.

It showed Amelia at 3 and 4 years of age compared to now.

It was not only incredibly upsetting to collate but also to watch the final copy.

I…… personally,  chose not to show it tonight.

Not only was it humiliating to Amelia, but it would also be incredibly upsetting to many in this room tonight.

Amelia used to run ahead of me into school, jump on the bed and sing and dance all day.

She was a “normal” child .

ow she needs someone to WALK with her constantly, someone to help get food into her mouth and needs assistance toileting and showering.

The patience needed to communicate with Amelia is time consuming and also very upsetting when you cannot understand what she is saying.

I was filming all of this to show you.

Filming a 9 year old child struggling to do every day tasks.

She did not like it and neither did I.

In 2 years the decline has been massive.

And it only gets worse from now on.

Ataxia Telangiectasia or A-T is a very nasty disease.
You cannot CATCH it.
It is genetic from your parents.’

It begins showing itself at 2 years of age.

It is degenerative …… it gets worse.

As your brain cells die , as they do in  every human, they are not replaced as they are for us.

Slowly all motor skills are taken away…, as is reading,….. writing, and speech.

Children with A-T die from either cancer (where there is a 1000x higher risk of getting than any other human), respiratory infection or choking.

24 hours a day we live with this BUT I have chosen not to show you any of this tonight.

Tonight is about going out and contributing to everyone in this rooms AMAZING LIFE.

Please watch this very special message and remember it when you are struggling to get through a day………..

(((((When that special message is uploaded to You Tube I will put the link on here)))))

xxx

Big Mistake

I have just realised a part of myself that I do not like.
Hopefully it is new trait and one that I can eradicate immediately.

As many of you know my cousin and I have been making a DVD using video footage of Amelia.
It features Amelia when she was 3, 4 and 5 years of age.
It ends with video footage of Amelia now.
I wanted it shown on Saturday night at "The Amelia Night".
Then I wanted it put on You Tube.

It has been very upseting collating all the footage.
Everything she COULD do when she was younger and everything she CANNOT do now.

But I became very driven and focused on completing it.

My motive?
I wanted the world to see what this horrible disease is doing to my daughter.
I wanted everyone in that room to know exactly why they are there.

I wanted to prove that Ataxia Telangiectasia is evil.

Tonight I was gently asked (very cleverly I might add) to think outside the square.
To just be aware of the repercussions this may bring.

By creating awareness of Amelia and her rare disease, I may also be opening up Amelia's life to a million negatives.

She obviously does not like the idea.
Amelia does not want to ever see footage of what she used to be like again.
She does not feel comfortable with me filming all of the things she cannot do now.

And I thought my motive was more important.

Amelia's friends are now getting to an age where they search the Internet.
Their parents may watch the video we create on FB or You Tube and not notice their child watching behind them.
I did not even contemplate the effect it would have on them and the possibility of what they may say to Amelia.

My motive was more important than thinking outside of the square .........

And finally "The Amelia Night" is positive, happy and focuses on enjoying the life we have, no matter it's timespan.
Every time I wondered whether it would create a depressing night........ I thought my motive is more important.

So after many, many hours of collecting footage, we have decided to lay the idea to rest.

And I will focus on my narrow minded behaviour and have a good honest chat with my daughter tomorrow about all the wonderful things she CAN still do (and that mummy's make mistakes too).

Puzzled

Yes that is correct.
I am very puzzled at the moment.

Everyone is telling me to "just enjoy it", but I can't.
I need an answer.
I need an answer so that it continues.

It is about Amelia.

Her physical skills, happiness, energy levels, sense of humour and speech have improved greatly in the last 18 days.

Why?
I DO NOT KNOW !!!!

I am definately not complaining about it but I need to continue whatever it is.

I will list for you the reasons I have come up with.....
(and yes I think of new ones constantly).

1. I have resurfaced from my recent depression.
2. Scott has just finished 2 weeks annual leave and was more motivated and happy while home with us.
3. 2 weeks break/rest on school holidays.
4. Sustagen nutrition drink daily.
5. New herbal tablet crushed into sustagen at least every second day (with ingredients I have never heard of. Some from Indian plant roots).
6. A plateau in her decline (very common for A-T kids at 9 years of age) and she has been able to regain her footing on life.
7. Her pesky little brother slightly improving in his behaviour towards her.
8. The new puppy.

The list can go on and on and on and on .........

Amelia has just returned from her fortnightly speech therapy session.
The speech therapist is now puzzled.
She heard Amelia communicate today.
It was better than at anytime in the last 12 months that we have been seeing her.

Last night we had a special visitor.
It was late.
It was the end of the first week back at school for Term 3.
Amelia SHOULD have been exhausted.
Instead this visitor saw the sarcastic and full of humor child that has recently appeared.
At one stage I noticed my visitor crying.
When I questioned what was wrong, the response was "I have never seen her this happy".

So fingers crossed it continues...........
(but I still need an answer !!!)

xxx

School Holidays

Hello.
My apologies for not writing for so long but we have been really busy AND I have taken the time to get myself back on track.....mentally.
The positivity has taken a while to return but I am very happy to report that it has !

Scott has taken two weeks leave so he has been a wonderful support in getting us out and about.
The 24 hour assistance with the kids and the house has also been a saviour.

Last week we had to take Tom to a "sibling day" at Very Special Kids in Malvern.
This organisation has recently accepted us into their group.
They have a "house" set up for children with "life threatening illnesses".
After having a tour last week it can be best described as a nursing home for kids.
There are fully qualified nurses constantly and a doctor on call.
Volunteers are on a roster and the children are free to play wherever they want.
Amelia loved the "sensory room".
Lots of colour, lights and bubble machines.
There is also a music room, xbox, TV, full kitchen and full time cook.
There is 8 bedrooms that can be booked by VSK families for respite.
For those like me, there is a parent accomodation house out the back.
After we had our tour, we had a talk with the staff.
I explained that I do not need respite and would like to keep the option available for maybe sometime in the future.
Scott and Amelia were horrified.
Amelia WANTS to stay on "holiday" and Scott wants her to come and enjoy it.
Ok.
It is a 3 month ahead booking process so I guess I better book her and her father in sometime (yes. Scott will attend the first one!).

Tom spent 4 1/2 hours at the sibling day where the theme was "Disneyland".
When he came out he was exceptionally quiet.
(Normally we would take him to hospital because something must be really wrong).
We got little bits of info from him and when he got home he began unpacking his bag.
He began playing a game with Amelia.
A game about "My sick sibling".
Questions about "My sick sibling".

Now I understand why he may be so quiet.
We do not refer to Amelia as "sick".
He said that he will go next school holidays "if you want me to".
We will wait and see........

On Thursday and Friday of last week, Scott insisted that we all go and stay at mum and dad's empty flat in the city.
We all left begrudgingly and negative.
We returned happy and positive.
We had dinner at Chinatown and spent the next day walking around Albert Park Lake.
Awesome family time and wonderful to break the monotony of home.

One conversation that I will not forget with Amelia and Tom will stay with me forever.
The morning of leaving to go to the city, I was out of bed at the same time as the kids.
This has not been happening lately because of my depression and exceptional tiredness.
When I have stayed in bed (weekends and school holidays), I always get up to Amelia on the couch, watching TV with her dressing gown on.

On this particular morning last week as I escorted her to her bedroom, I began putting her dressing gown on.
Tom casually said "I normally do that".
Later in the car I questioned what he meant.
He said "In the mornings I take Amelia and help her on the toilet. Then I put her dressing gown on".
At this point Amelia interupts "He always takes me to the couch and puts the telly on for me".

The overwhelming battle of whether to feel like an incredibly bad mother or be so very, very proud of our 6 year old boy has been on my mind ever since.

xxx