Sunday, 22 March 2015

Months of Catch Up.


It has been a long time between posts, so let me introduce myself again!
My name is Amanda. I am slightly nutty, very emotional and have recently been taught to live life differently.
In the last 4 years, I have been on a roller coaster of feelings and emotions that I never knew about.
You see, our beautiful daughter, Amelia, was diagnosed with Ataxia Telangiectasia in 2010, and our whole world crumbled.
I have been living a life I never even considered in my future aspirations in my early 20's.

I find that by writing my feelings and thoughts down HELPS.
I have also found other caring people in my own personal journey.

I have lost friends, gained friends, experienced haters and changed as a person.

Our son was diagnosed with Type 1 Diabetes 14 months ago.

I know need to start back a few months........

We had an OK Christmas.
A "Minecraft" Christmas, as Amelia and Tom called it.

The kids loved their gifts from Santa and those around us.

They were presents and we were happy to see smiles and eagerness to download and play with special app games and merchandise.

Our Six week Summer Holiday was busy.
I was determined to "make up" for the time I had lost through working last year and my subsequent depression.

I reconnected with the kids.
Emotionally, physically ........ psychologically.
It was awesome, amazing and beautiful.

Now, I need to tell stories through photograghs.

 Amelia insisted on buying a Christmas tree for her room.
She MADE me go to K-Mart so that she could choose her tree and decorations.

 Our family was invited to attend a Christmas party for Anglicare, a charity organisation that purchased Amelia's $15,000 communication device. As Amelia's ability to talk decreases, she is able to use this to continue talking to us.
I chose to take Tom only due to the noise of an arcade game venue. Amelia can no longer handle loud noises.
It was wonderful to spend 1 on 1 with Tom playing mini golf, arcade games with flashing lights and ten pin bowling. A very special person in our lives looked after Amelia till afterwards.
 Tom's school Christmas Concert.
Something was wrong with his tongue.

 This is going to be a long story.......

The man in the photo recently left Tom's school.
Everyone was heartbroken, but we had a very special reason.

This man was a teacher that all teachers should aspire to be.

His primary focus is not on academics.
It is on the social, emotional and wellbeing side of each individual child's life.

If children are not feeling safe, happy and having fun, then how can they learn?

That was the difference with this man.

When Amelia began there in Grade 1 as a child with "mild cerebral palsy" he was like a magnet to our family straight away.
When a child thought it was funny to repeatedly push Amelia over in the sandpit, he addressed the issue immediately.

When Amelia spent the week in hospital and emerged with the label of Ataxia Telangiectasia, he did what no one else did.
He focused on Tom.

He recognised that Tom was the forgotten child in all of the grief and move to acceptance.
Tom was only 3 years of age and was repeatedly taken into his office, helped do "jobs" and was spoken to like HE was important.

That continued right up until last year.
He always knew where Tom was playing if we needed to pick him up early AND always knew of what this little man had happening at home.

Amelia was treated like a princess by this man and when Amelia decided "I do not belong here anymore", he was the first to arrive at the classroom where she had announced this to me amongst busy grade 3 children.
We decided that she would come back the following week for one last day.

That last day will be with me forever.
During the usual morning assembly, he addressed the school to announce Amelia's final day.
It will always brings tears to my eyes the poem he read.

While most would have just " brushed off " that this was her final day, he recognised what it meant.

On his own final day, he stood up in front of the school with a Dr Suess hat on.
He told a story of the author of these famous books.
A story before he published any books. Before he became famous.
He spoke of how this man was repeatedly turned away from publishing houses because his idea was "rubbish".

He told the children that this man never gave up and was eventually published.

The author has now published over 70 books and is famous worldwide.
It would be hard to comprehend his wealth.

This man told over 500 children in this assembly
"Never give up. Keep aspiring to be and do what your dream is".

I will NEVER forget that speech.

When he arrived at our house, just before Christmas, he gave his Dr Suess hat to Amelia.

What could be more poignant?
A child that has so many limitations and yet this hat says.....
"Never give up. Keep aspiring to be and do what your dream is".

Everytime I look at that hat, I am reminded of the man who believed in my children.
REALLY believed in their future.
REALLY believed they could be something and someone.

It was the same to all children at the school.
You only needed to look at the amount of parents in attendance in his final assembly.
People who took the morning off work, children that took the morning off school.

Mr Phil Barnes, I do not know if your new school realises the person they have hired, but I know the person we have lost.

You will be in our hearts and memories forever.

I had so much more to write and speak about......
BUT I will leave that for another day now.