Wednesday, 8 May 2013

The bigger picture

A little girl running ahead of me into school.

Hard to believe that was Amelia now.

So much has changed in the last 2 1/2 years.
She can no longer walk, let alone run.

Makes me scared about what the next 2 1/2 years will bring.
I am too petrified to think about 10 years.

Sometimes the weight on my shoulders is too difficult to try and process.

We try so very hard to do our "very best", but there is always going to be the prognosis for the future.

She will slowly disappear in front of us.

In 10 years there is a BIG possibility that she will no longer be with us.

Our life.......her life has turned out to be incredibly unfair.

Sometimes "coping" does not seem enough.

Sunday, 5 May 2013

Would the REAL Amelia please stand up.


The Amelia I know has kind of gone.
I cannot find her.

The Amelia that I currently have had her ears pierced last week.
Everyone knows that Amelia gets hysterical at even the thought of pain.
Taking off a band aid makes the neighbours think we are assaulting her!

During the week Pa (Scott's dad) suggested that he could pay for her to get her ears pierced for her birthday in a few weeks.
After much confusion, (because she burst into tears and sobbed that she wants to get it done), she became very excited and determined to get it done.

I may have been heard to suggest that maybe this much determination needs to go into getting needles and blood tests!

After boasting to everyone at school the following day that she was getting her ears pierced she arrived home on the bus with anxiety levels at fever pitch.

I confirmed that she wanted to get it done but she was petrified of the pain.

So.........I put numbing cream on her ears (apparently it did not work), gave her nurofen and we arrived at our favourite chemist around the corner.

Amelia obviously did not realise the actual pain that ear piercing causes.
After discussing the difficulty of getting two ears pierced simultaneously with Amelia's constant head tremors and movements, it was decided to do one at a time.

She was almost left with just one ear pierced !!!!

The desperation to get away from our friendly pharmacist to complete the second ear definitely showed marvellous determination.

After many tears and admiring in the mirror, Amelia revealed two hours later while sobbing "It hurt so much but they look so pretty".

Amelia is also changing from my angelic, well behaved child into ......... well someone with a lot more spunk.

This week Scott was assisting her with a task.
As he was helping her she said rather aggressively "I know how to do DOUCHEBAG".

Douchebag ??????

Scott and I launched straight into reprimanding this behaviour but I did have to keep leaving the room so that I could relieve my shock and laughter.

Finally...... Amelia's 10th Birthday.
In a few weeks Amelia will be entering double digits.
My concern is that she has become birthday party planning obsessed.
Decorations, invited guests, food and presents are currently constant discussions.
The middle of the night she gets an idea and has to wake me to tell me!
No "good morning" first thing in the it is another idea to add to her LISTS.
There are lists everywhere.
I am expected to drop everything when she wants to discuss her birthday.

Recently we attended a "disability coffee morning" on one of Amelia's curriculum days.
Suddenly the gorgeous girl employed to entertain the kids approaches me and says.
"Hi. Amelia said she wants a disco party. My friend does disco parties for a business. Can her and I come and do Amelia's party?".


Amelia had won her over that much in that short time that this stranger wants to GIVE Amelia a disco party !

Below I have posted a link to this business.

Alicia and Mieke are the angels coming.

Must go, Miss Amelia is requesting (demanding!) we ice the cupcakes we made earlier.

Speak soon