Friday, 5 July 2013

From happy to sad

Hello everyone,

Last night I wanted to write about something that happened with Amelia but did not think it appropriate to rain on Tom's parade.

So here goes.....

While Scott was cleaning up after dinner last night, I began the nightly ritual of preparing Amelia for the shower. I need to undress her and assist her to the shower chair and then personally shower her. Scott then comes and dries her and puts her PJ's on.

Last night brought the usual stumbles and lack of balance. The swaying and sometimes falls are standard.

But last night something happened that broke my heart.
Amelia began crying.
She said angrily "I hate A-T. I wish I didn't have it. I just want to be normal".
She said it over and over again.
Scott came down and all we could do was hug her.
Hug her and tell her it is ok to feel like that.

We have not heard her say it for a very long time.
We have not seen this frustration, sadness and anger in ages.

We let her cry and let out all of the pain from within.
What else could we do?

Another extract from the book.......

The colic did not take long to begin. The night after we come home from hospital actually. Horrible screaming and arching of her back. This little baby was in so much pain and no one was able to stop it happening. The memories of standing in her room and rocking her. Holding her against me and trying to soothe whatever was causing so much pain. Scott would go to bed and struggle to imagine how the baby and I would survive the night. Mentally, I would take myself to another world and just switch off from the actual one. I could not put her down because I did not want her to suffer this alone. My role as her mother was to protect her and that did not mean placing this tiny body in a cot and walking away. “It will stop soon” the doctors kept saying

At 4 months of age it did stop. I will remember the day forever. Amelia was lying on a triangular pillow on the floor. It was next to a window and the sun was shining in brightly on the room. As the daily jobs were now something that was my only life, I was busy around the house. In a moment “IT” happened and has never gone away. I walked past our baby and she arched her neck to look at me. As I looked into her eyes she gave me the biggest smile that melted my heart. My feet stopped and I sat beside her and began looking at her in a way that a mother should look at their child. Her eyes and her smile felt like a comfort liquid flowing all around my body. That is the day that I learnt the saying “I would die for you”.

Thursday, 4 July 2013

Tom and his footy

Hello Everyone,

Last weekend Tom's football team "The Melbourne Demons" played in the usual weekly round of games.
They have faced a lot of controversy this year in regards to their bad form.
They have lost many games........miserably.
Comments like "going to watch a team play while Melbourne watches" has been standard.
Tom has even resorted to saying "I am just going to watch the demons get thrashed".

Last weekend was different.
They began the game the same as normal.
The difference last weekend was the demons kept up with the other team and even stayed ahead the whole way.
Very unusual.
It never happens.

This poor child watches his favourite team day in and day out and watches them lose.
He gets all of his fan gear on and goes to watch them lose alone.
Last week was different.
Second Quarter meant they were still in the lead and ....... OMG the third quarter was the same.
This is unheard of !!!!!!
Tom was in shock.
Scott was in shock.
He had chosen to join Tom and celebrate a lead for once.

At 10:17pm...... THEY WIN !!!!!
The Melbourne Demons actually won a game !!!!
Tom and Scott were bouncing around the lounge room hugging each other and high fiving.

My dad who has been a massive AFL fan (and primarily Essendon Bombers) supporter since the 1950's, apparently lept out of his own recliner and punched the air and cheered........for Tom.

Friends were sending messages and texting, just so happy for Tom.

All of these adults did not really care about that particular team, but that night meant everything to Tom.
Watching his game, the weekly ritual, was a massive surprise and brought great excitement to his little face.

Love my little man and all he brings to this family.


Monday, 1 July 2013

Disability Care Launch

Hello everyone,

Very big day today.
We had to drive our "little star" to Geelong.
That is about 90 minutes drive time for us.
After much complaining, from Tom, all week about attending we left him with my parents.
He is not well but dislikes any long drives since the car accident two years ago.

Go to the link below and read the third blog on the page (the bottom one).
It may explain our sons fear of driving now.

Anyway today Amelia, Scott and I drove to Geelong Town Hall.

When we arrived there were many people in a reasonable sized room.
One hour of speeches (lots of politicians patting themselves on the back) and one lady in control of the whole thing.
This one lady was just like you and I and was just so excited that something she had been advocating for has come to fruition. She kept throwing her hands up and excitedly saying "We did it".

There was no famous people (damn!) or TV cameras at our launch, they were in Newcastle, where Kevin Rudd was.
But some of the others on the commercial were at our launch.
It was an absolute pleasure meeting them and their families.

There was lots of  "free food" and I made sure I tried EVERYTHING !!

Have received some more interest about the book today.
I am up to the tenth chapter.

Speak Soon