Saturday, 24 September 2011


Today we had to find EVERYTHING for two new bathrooms.

The family bathroom needs a spa bath, shower head over bath and vanity.
The ensuite needs a detachable shower head, vanity and toilet.
Both bathrooms need towel rails, taps, drain grates, handles and floor and wall tiles.

Lots to choose, order and pay for.

Now I am going to explain a scenario of the day......

Kids were really excited about helping us find everything.
Scott and I were very anxious having never done this before.

At our second "showroom" we found a very helpful lady and many of our final purchases.
We were there for 2 hours.

The children suddenly became feral.
They decided the baths and showers were an excellent place to play "hide'n'seek".

And then chasey.

They ran, laughed loudly and called out constantly.
They treated the place like a playcentre!

As Scott and I tried our best to discipline, redirect and grab firmly by the upper arm, it continued.

As Scott and I asked questions, looked at products and made final decisions, Amelia and Tom were behaving like they were already at Disneyland!

After 90 minutes ..... it happened.

When you think that they can possibly not add any more to their game, they come up with a new element..........

As we were standing at the counter waiting for the estimated amount, we heard very loudly (echoing off tiles and baths)......


from one of our adorable children.

On the other side of the showroom, an even louder.....


Scott and I turned around and looked at all the people shopping, all the salespeople trying to communicate and started laughing.

They were now going to play a game of !!!!!!

I looked at Scott and said

"well at least they are happy".

We were told we could do the rest over the phone !!!!!


Friday, 23 September 2011


Today I am bursting with pride, excitement and happiness.
In just the few short hours I have been awake, so much has already occured to make me want to cry tears of joy.

It began with sibling rivalry in our bed this morning.
During our morning cuddles the kids started annoying each other.
Amelia was "mimicking" Tom.
Putting on a different voice and copying his words.
Tom said "Stop being a baby".
Amelia's response .......
"Just because I have disibilities does not mean I am a baby".

Woooo Hoooo !!!

It is not what he meant (he was talking about about her voice) but I absolutely love this opinion.

Then she said "and you have nail polish on, so you are a girl".

Now this is where I stepped in and told them to "be nice". But on the inside I was jumping for joy.
My Amelia still has a bit of spunk in her !!!!!

Then we arrived at school for "footy day".
As we made our way through the gate and to our area, Amelia and Tom had the biggest smiles. They were being booed AND high fived for their teams clothing. They both thought is was hilarious.

When I see my children genuinely happy, it makes me very emotional.
I am already visualising our holiday (in 13 sleeps!) and spending a lot of time crying !!

So as I prepare to go and choose the tiles for our NEW bathrooms, I feel my heart and mind are very warm from the beautiful experiences I have already had today.

Have a wonderful day everyone.


Thursday, 22 September 2011

Lists and lists and lists.

I may have a new motto for right now.
I have already mentioned "rolling with the punches".
Now it will be"taking it ALL in my stride"......

Last night Scott cleaned out his wardrobe (after I ordered him to!).
In the bathroom renovation he will be losing his "man cave" and we will be sharing the same one.
We moved our bedroom around to accomodate the chest of drawers. Tom was so excited. "I feel like we are moving house" he announced jumping up and down.

Now in the next 2 days we have to ....
1. Choose tiles for two bathrooms.
2. Choose 2 new vanities.
3. Choose 2 new showerheads.
4. Choose 2 new toilets.
5. and find a spa bath suitable.
And Scott works full time remember !!!

Then bathrooms and Scott's wardrobe need emptying before we leave in 2 weeks !!!!

Did I mention we also need to pack and be organised for our "trip of a lifetime?".

Taking it all in my stride........

Making sure that the housesitters can still live and function here is also on my mind.
BUT when you have something so wonderful as a group of tradesmen offering to work for free.....well we can make it all happen.
Now "Tait Hardware" in Somerville have also offered to donate all of the building supplies as well.
2011 has changed my opinion on EVERYTHING in life.
It may have been bad but there has also been so much good.

Today Tom's Kinder friends received a notice today explaining THIS website. Amelia is also handing one out to all of the staff members at school.
So many people have been on this journey with us this year and now I want everyone to live it with us.
Tom and Amelia want to share the experience with people around them.

Anyone is welcome to read the entries on the right hand side of this blog BUT please remember it is NOT suitable for children to read.

Now I must go and continue my "list writing" because there is SO much I need to do !!!!!



Monday, 19 September 2011

One decision made.....

This will be one of those blogs where lots has happened.
The last few days have made me sad, scared, worried and happy.
But today everything seems to have fallen into place.

Amelia was very sick on Friday.
Most children with croup, a cough and cold can just "ride it out".
But the way Amelia was on Friday was frightening me.
She couldn't walk, she couldn't think.
But she was still thirsty and hungry.

My difficulty was.......
At what stage does she require hospital treatment?
An A-T child's lungs can become scarred and damaged from illness.
They do not have the ability to heal like everyone else.
Every cough grated on me.
I needed it to stop.
I rang Krissy.
I rang RCH.
I rang Ashton's mum (Ash has CF).
In the end we went and saw our local GP again.
He put Amelia on a really strong penicillan medication as well as the croup liquid.
I also remembered the strong pain relief medication called "painstop" Amelia had to have a few years ago after an operation.

Now that night I was due to go and stay at mum and dad's flat in the city with some girls from Amelia's Project Committee.
Scott was insisting I still go and then the doctor agreed.
Scott is capable of giving expert care to his own daughter and I did not doubt that.
So I went.
(Scott assured me that the Painstop was extremely effective).

On Friday night I had a fantastic night.
So much food, alcohol, music and laughs.
So much laughing.
Just a really honest girls night out.
No stumbling or slurred speech, just good fun !!!
I definately felt rejuvenated from it.

Over the weekend, the decision needed to be made on the house.
What will be in everyones best interests for the future?
But mainly, which option would allow Amelia to move an electric wheelchair around freely and not limit her independence (because she cannot get to the kitchen etc).

Mark wants to renovate our bathrooms while we are in America and we did not want to waste his time.
He has managed to get tradesmen to donate their time for free AND now most of the materials are being donated.
Two bathrooms (one for bathing, one for showering) for a ridiculously small amount.

Jemimah's husband came around to give his expert opinion on whether we have the capacity to make this current home more appropriate.
His idea was.......
Imagine coming in our front door (in an electric wheelchair)and turning left into our formal lounge room. Then turn right.
From our dining room we would have one big living area right down down to the toyroom (make our pergola a room).
This would also be open to the eating area, kitchen and bedrooms.
Another way is to still turn the pergola into a room and drive Amelia to a separate entrance down the side with a ramp.
The cost of this will be similar to just paying moving costs and probably having to pay more for another house (which would still need it's own renovations).
Have you been able to keep up ??!!

So I am very content and relieved that we have made the best decision for our future home.

Amelia will have our BIG bedroom in the future with a BIG ensuite. She will have a beautiful view of the backyard and be able to go out the balcony door to possibly a deck in the future and enjoy the fresh air and sunshine.
Scott and I will move to the original master bedroom up the front of the house.

One very big decision decided.

Now back to counting down the 17 sleeps till Disneyland !!!!!