Hello Long Distance Friends.
Amelia is doing reasonably well at the moment.
There are more "down" days than usual and complaints of "boredom" but overall she is still sailing through life.
We will be inquiring about medication for the sad days sometime in the near future.
It is hard though.....really hard.
A consequence of seeing and hearing about what others have been doing, is she wishes to be able to do many things.
Children in her year level at her old school have just participated in school camp.
While discussing this at dinner the other night, she wanted to know when she gets to go on a camp.
Amelia only ever gets to stay at my parents and a couple of times at a friends from the special school.
Last week it was mass excitement to be invited to sleep across the road at "Georgia's".
Big week with my birthday, trick or treating and a sleepover with a good friend.
Amelia's hands no longer work the way she would like them to.
The ability to eat, drink and use the ipad is almost diminished.
The need for us to assist her constantly has increased to almost 99% of all activities.
I am concerned about the way her back leans.
Amelia's back is no longer straight......... it is......... slumped.
That is the only way I can describe it.
Slumped and to the left.
Amelia's eating is getting closer to the need to be "peg fed".
This means you have to feed a person through a small tube in the stomach.
The reason for this is nutrition.
Amelia will eat donuts, hot chips, potato chips and dry biscuits till the cows come home......but there is not a lot of nutritional value in what she eats anymore.
Tinned tuna and small amounts at dinner time is it.
The facial expressions and defiance not to open her mouth are frustrating.
At least she has the extra weight to rely on for now.
Strangely, Amelia's fatigue levels are better than they have ever been.
She is surviving the long hours of a day and still has her humor in tact.
Amelia has always refused an afternoon sleep, so it is easier to see her coping till bedtime.
Tom is being very difficult at the moment.
He is someone I will discuss another time.
I am struggling.
I am working full time, trying to apply for permanent full time work, fit in interviews and now 2 ultrasounds for possible gallstones.
I refuse to meet up with friends because I have NEVER had so little time with my children.
Scott is still being magnificent but I am still struggling to comprehend what I have given up.........and I am exhausted.
It is HIS turn.
HE has done this for the 10 years (since bubbies arrived) and now I need to share the valuable time.
It is understandable that family do not like seeing either of us stressed and not well from financial strain.
My parents are experiencing it for the first time.
They do not like seeing me experiencing possible stress symptoms..........but Scott's haven't for the last 10 years, so it is my turn.
But it is hard.
Maybe at this point, I need a really good cry and remember to appreciate that one of us is home with the children.
A parent that is still offering them memorable and important quality time.
Some mornings it is so hard to get up and get ready for work.
I need permanent full time.
A place to settle, grow and inspire at.
Not agency work.
I have just returned from "Christmas Idea Shopping" with Amelia.
It was fun.
It lifted my spirits.
Her smile lifts my spirits anytime.
I have returned with so many ideas for her and Tom.
I LOVE her obsessions with make up. perfume, glitter and One Direction.
I love her obsessions with BFF's, singing to the radio and favorite music.
Yesterday was special though.
As I lay "sulking" on the couch, Amelia worked her way through a Disneyland app on her ipad.
For hours she reminded me of the fun.... at this part...... and that ride.
I was amazed at her memory of Disneyland (when she struggles to remember how to count to 20) and found myself staring at her wondering what was occuring.
Then she came to one particular ride.
It was one in California Adventure Park, about 200 metres away from Disneyland.
On this one particular day, Mum, Dad, Scott, Stuart and Tom decided to enter this "realistic" theatre.
Water splashes at you, spiders come down from the ceiling and pieces of your seat move.
The discussion was had that Amelia would be "freaked out".
They all went and I took Amelia to investigate other parts of the park.
Amelia and I came to a ride.
It could be considered one for younger children.
It was about healthy food and fruit salad.
We climbed aboard a caterpillar.
This caterpillar took us on a sensory journey through taste, smell and sight,
Yesterday....... 2 years after this adventure, (when I had long forgotten this 10 minutes in time), Amelia verbally reminded of every step of the ride.
Every smell and every sensation.
"I want to go back " she said.
"Yes. Me too" I answered.
Oh........ to win Tattslotto.....and live life simply...........
Like anyone and everyone.