Some of you may remember our 'beach' day in Hawaii at the end of October.
Amelia's legs collapsed underneath her while we were still on the sand and it was a mammoth effort for Scott, Tom and I to get her back to the hotel.
Today Scott started back at work after having the Christmas/New Year period home with his family.
I thought it would be exciting for the kids to go to our local beach because it is something we rarely do.
It would also distract them from their daddy starting work again.
I have also been thinking about how I have one child who DOES NOT have A-T and HE needs to experience things that other children do.
We spend a lot of time at home.
We have a TV on a lot because Amelia can sometimes cope with not much else.
The guilt of Tom's "daily life" has been building over the last few weeks.
I thought that HE needs to go and Amelia and I will deal with it.
After searching for motivation and enthusiasm (I hate sand) we began the drive to the ocean.
Amelia mentioned that she did not want to go because she gets too tired.
I suggested to her that "this would be our last attempt".
I just wanted to try one more time.
It was slightly difficult supporting her down to the water.
I was able to sit her at the waters edge and she was enjoying the experience.
When it was time to leave was when it all turned upside down......
Amelia and Tom were covered in sand so I suggested they enter the water to wash it off.
Tom had spent the previous 75 minutes in and out of the water so it was not a problem for him.
Amelia refused to do it.
Then I realised she was neither confident or physically able to do it.
The walk back to the car was difficult.
Over the next 90 minutes Amelia "shut down".
Her body would not work and she struggled to talk.
I opened a beer at 11:45am.
I figured I deserved it.
On so many levels I am upset, annoyed and frustrated at the moment.
We cannot even go to the beach now........
And to see her sobbing and trying to verbalise "I am so exhausted" is extremely emotional for a mother when you know it is only going to get worse.
So tonight I have had lots of chocolate.
Sometimes it is the only answer........