Friday, 31 August 2012

End of another chapter

Today was the end of another chapter in our book about Amelia's journey.

Amelia had her last day at "mainstream" school.
It was her decision.

She felt she was ready to attend special school full time.
Amelia decided to attend a place where she feels she "belongs" rather than a place where she feels she doesn't anymore.

It is neither a criticism on the staff, students or parents.
It is the progress of her disease, ataxia telangiectasia, and choosing to be where she feels most comfortable.

Once again, it was Amelia's decision, not mine.
I do not disagree with her "speaking up" but it was never going to be a decision I would decide for her.

I realised that my week has been full of trepidation about today.
I have been trying to understand the basis of my anxiety.
It was only today that I realised it is another step in the decline of A-T.
Another step closer to ....... well you know.

Amelia has attended this school since 2010 as a mainstream student.
Certain staff members travelled with us on the pathway of diagnosis.
They grieved along with Scott and I.
They mourned the reality of Amelia's decline.

Every single individual handled it differently ....... and still does now.
Today it was obvious who can overcome their own selfishness and who can understand and accept a 9 year old's choice in what is a very difficult life.

Today began with a speech from a beautiful Vice Principal.
I listened with great intent and Amelia smiled like she has not in a long time.
To combine his speech with " Literacy Week" he explained that he had written a poem for someone special who was attending her last day at LPS today.

A is for Amazing
M is for Marvellous
E is for Energetic
L is for Loving
I is for Inspiring
and finally
A is for Awesome.

He explained that Amelia is going to attend another school now.
He also thanked the school community for "embracing" Amelia.
He also told her she will be getting a big kiss and cuddle later !!!!!

In front of over 450 students and at least 30 parents, it was beautiful.

Amelia's smile was priceless.

Tom ran up to me afterwards as a proud brother.
He was not jealous or confused.
Just proud.
"Mr Barnes talked about my sister, my bee-ub (the name he has called Amelia since he was 15 months old). I had the biggest smile on my face mum".

I was grateful that I was taken out for lunch with two very special friends.
It not only took my mind off the momentous (if that is the correct word) occasion but also gave me a chance to be me.

Amelia had flowers professionally delivered to school.
Special teachers gave her presents.
A special mum made her cupcakes to celebrate her farewell.

It was a special occasion in Amelia's life.
A closing chapter in her journey.
A memory of a time and of people that have contributed to Amelia's life, however short that may be.

The children are who I think about the most.
On this journey we reach for the positives and learning.
You have to think that maybe there is some benefit to others in this horrible card we have been dealt.
I hope that the children at her mainstream school have learnt something from Amelia in establishing themselves in their own life.
Happiness, Negativity and Appreciation come to mind immediately.
The understanding and development of these traits is essential in everyday life.
Compassion, empathy and friendship are next on my list.
They will assist in developing a decent human being.

The teachers may be beyond learning but it is evident many have taken away a lesson in having Amelia attend their school.
Or maybe it was already "inbuilt" in some.

One teacher was realeased from hospital yesterday only to attend briefly today "just to say good bye to Amelia".
The gifts and cup cakes she brought will be treasured forever.

People like Phil Barnes, Petulia Dunn, Jayde Wakefield, Tanya and Nicola Pepper will have a special place in "Amelia's Life" forever.

Thank you for assisting me in making her life special.
You all go beyond the duty of "teacher" and actually treat people as human.
Sometimes "rules" and "protocol" need to be broken.
It is rare that a student is diagnosed with a "terminal illness" and I think you have all handled yourselves beautifully.

Finally the wonderful Meredith Hill.
I am so happy that we have become friends.
I do not know what I would have done with out you.
The flowers you had professionally delivered to Amelia today were beautiful.

And Katý.
I do not know your surname.
I just know you have a child in Tom's class.
Thank you for being such a kind person to make very special cupcakes for not only Amelia's class and all the teachers...... but also for Tom's class.
Please support Katy's new business by visiting her website

The end of this chapter brings great sadness and appreciation for people who are naturally beautiful people.

Always look for the positives.


Wednesday, 29 August 2012

Thank you to everyone for their compassion and messages after my last entry.

Amelia (and all of us) are doing really well and have happily supported her on the decision she made.
Tom was initially upset because he will no longer see Amelia at school, but he understands why she wants to do it.

I wanted to come here to tell you all about something that we are all very excited about.

Next Tuesday Amelia is going to finally be given her motorised PINK wheelchair.
It will be hers to keep forever !!!!
She is beside herself excited (and obviously so am I !!).

Next week the converted Kia Carnival will also be ready to pick up ...on Wednesday.
So Amelia and I will take a "wheelchair taxi" to the conversion workshop to do the final fittings.

Finally we will get it all !!!!

This winter and my back have been making the manual wheelchair a difficult exercise, so it is going to be exciting for everyone.

Sound obsession (in Frankston) have also installed a DVD player (with 300 inbuilt games), in the car,  for us as well.

We may just want to live IN the car !!

Finally, the communication device.
As Amelia's speech becomes more difficult to understand and she tires easily, this device from Dynavox will be extremely helpful.
As well as letting us know what she wants to say, it also has an inbuilt computer, wifi and bluetooth. It will be connected to her wheelchair.
The joystick "driving control" can switch to be a mouse for the communication/computer device.

We were going to be $6400 out of pocket once the government made their contribution.
Thanks to the beautiful people at Anglicare in Rosebud we now have nothing to pay.

Anglicare are paying the entire gap of $6400.


By Amelia's enthusiasm already, I know this is going to lift everyones spirits up.