Thursday, 5 May 2011


Feeling rather sentimental tonight.
Overnight I had 5 hours sleep (thank you Tom, hot water service and itunes!), but woke up surprisingly positive this morning.

"Stuff this" I thought. "Get over it".
So I did.

I dressed trendy (very unusual for me lately) and went and saw the most spetacular book parade I have ever seen. And my gorgeous Amelia was in it !

But now in my positive thoughts I am reflecting on Amelia's Project.
So many people. So much kindness. So much love.

You all do not see/hear the people I do.

The people who do not post on FB.

The ones who show up at your door with a kind word, gift or invitation to go out.
The private messages of love and support.
The text messages and phone calls.

So many people that read everything online but do not show everyone else that they are there.

Thank you and know how much I do appreciate it.

And the rollercoaster continues .................


Wednesday, 4 May 2011

Thank you

Thank you for all of the beautiful messages today.

Amelia woke up today and decided she wanted to go to school.
After some Nurofen, a good night sleep and remembering that I had said she could have a friend home to play, she was marginally happier this morning.

So after the plumber left at lunchtime, (our indoor hot water service decided to leak under the floorboards last night), I lit the fire and sat.

Finally my day ended with Glee.
But unfortunately that didn't even lift my mood tonight.
I hope this doesn't last much longer. It is really starting to piss me off !

Tomorrow is a new day.


Tuesday, 3 May 2011

WARNING: The following content may be depressing.

Very flat this week.
Not feeling positive and happy at all.
Trying, just not succeeding.
I understand that I need to and have to have times like this, but it does not make them any easier.

A family in America that I am becoming fond of just found out their A-T child has lost a large amount of her cerebellum (base of the brain). This little girl is 7 years old. Reading the posts and then the blog took me back to how I felt in December when I was being told horrible things about Amelia.
Then someone very kindly donated a shower chair to us. But the chair made me very upset. It is an example of our future. Of Amelia's future. I have had to actually put it away because I cannot look at it......right now.
Then today I was told about a 7 year old in Ohio that had a seizure (common for A-T kids) and is now in a coma.
Amelia is seven.

But this week Amelia is struggling.
Tonight she was crying, extremely tired and talking gibberish (in that I could not understand her).
This week I have watched her sitting and watching other children play, unable to get up and join in.
When other children talk to her she has difficulty turning to look at them and then speak, to answer.
Hearing about things other children are enjoying and doing.
Any discussions about school centre around how "hard" it is.
I never, ever thought I would think about this situation so early on but maybe I need to start preparing us all for Special School.
Maybe it would not be as "hard" and she would not be the only one struggling.

Just crap really.

So I will continue filling my face with red tulip easter eggs and then spend a cuddly day at home tomorrow with my special little girl.


Monday, 2 May 2011

For the 1491st time I have survived Day 1 of quitting smoking (and so has everyone else around me!).

Amelia ....... well I will have to write about her another day.
We are noticing a few things that are too sad to talk about right now.

Tom "practiced" Auskick all day.

Bit flat right now.
Probably need a cigarette but need to stay alive for the kids.


Sunday, 1 May 2011


Have been unable to post anything until now.
As well as being sick AGAIN, it is taking a while to recover from "The Royal Wedding Sleepover Party".
It seems I do not have the endurance and recovery "in me" that I used to have !!!!
But I am in shock that Amelia stayed up till midnight and can still walk and talk. I cannot remember the last time she was able to stay up that late.
So much fun.
And Amelia and I thought the wedding was absolutely beautiful.
Thank you Julia and Gary for letting us come and stay.
(Loved the message from Emma Hull. Because of our obvious excitment about the wedding, her daughter Olivia saw it on the TV and said "oh is that the wedding Amelia was going to. Let's see if we can see her !!")

Yesterday I was a zombie.

Today we had a very excited 4 year old boy.
His first time at Auskick.
I should of filmed his excitement and enthusiasm this morning. It was just gorgeous.
But trying to get there by 8:45am on a Sunday morning took all of Scott and my energy.
But we all went. Scott, Amelia and I. And my brother Stuart came too.
Something else just for Tom. He loved it.
I asked him if he enjoyed it and was looking forward to coming back next week.
His answer " Definately, cause I am really good at it !!!"

Anyway now we wait in excitement for a special letter from Jazz (Tracey) in Hairspray that someone just got this evening.
How exciting !!