Getting quite funny ....... this title.
(Sorry. But I am at the insanely, hysterical stage now).
I am trying.
I am trying so hard that it is at the ridiculously, funny stage.
I am pulling all the animated, happy and childish behaviour out that I can find.
This week I started Amelia on a tablet (crushed) that is full of goodness from plants in India and millions of other "potent" ingredients.
Ingredients that research says can "save dying brain cells", destroy "oxidative stress" (a major cause of A-T) and create radical cells to kill cancer.
The first two days were interesting.
Day 1 : Hysterical laughing from Amelia.
When I questioned her on this abnormal behaviour, she would say "I am just so happy".
Understandably I read the ingredients again, this time checking for "MARIJUANA" !!!!
Day 2: Amelia scooped egg out of an egg cup BY HERSELF.
She has not been able to do this for a long time.
So obviously, I got a bit excited.
Fine motor activity AND immense happiness.
Then today came.
In the midst of "sadness" Amelia and I saw an old playgroup mum (have not seen since pre-diagnosis.... yes that is our life now).
She now thinks our life is so bad.
I was trying to say to her "this is not the way we normally are".
I was stopping my tears coming.
Then I realised hers were already there.
I saw in her eyes what OUR life has become.
That was a massive turning point for me.
FUCK this .... I thought.
I do not want people looking at us like this.
Amelia was sobbing (crying) outside Target (local department store) because I could not understand what she was saying.
I could not understand what my 9 year old was trying to tell me.
Over and over I could not understand her.
So incredibly frustrating for her AND me.
But for her....she has the A-T.
I do not.
So I tried with "all my might" to find every ounce of happiness and childish energy....
Walk into the "junk shop" Amelia was desperate to spend her money.
No wheelchair access.
So I get her out and walked with my arms wrapped around her.
Supporting her, holding her up.
She walked the whole shop.
She looked at every single thing.
After making Amelia's purchases we left.
I walked straight into our local supermarket and taught Amelia what you do on a "sad day".
We bought potato chips, donuts and chocolate.
Then I remembered.
So we circumnavigated for our finger buns !
(yes. I have a routine).
Amelia giggled and laughed the whole way.
I was not a "good mum" in one way, but maybe I am in another way........
Teach your daughter "emotional eating" !!!
So now as I drink wine and wash my day away, Amelia cuddles her daddy on the couch and watches "The Muppets".
Another "child" was admitted to hospital in America today.
He has been placed on a ventilator indefinately.
His mum is currently having the "end of life talk" with him.
I am trying.
I am really, really trying........