There have been discussions with people recently wanting to know how Amelia is REALLY going.
I understand that part of this blog is to inform everyone of Amelia's progress.
Unfortunately because of the "hand Amelia has been dealt", progress is not the appropriate word.
Part of coping, not only for myself but for many that follow these entries, I always focus on the positive.
I report "happy times" and "cheeky moments".
We all know she is slowly dying, slowly disappearing and getting much quieter.
Living with this knowledge and trying to find a way of coping has been simple.
The same motto "No Regrets at the end" is in every single second of my day.
There is no use wasting time grieving now.
We will have many years for that later.
So as Amelia's needs change we just roll with it.
So now I will give you an overview of "our day".
I will try my best to put no positive spin on any of it.
Amelia's falls on top of me every morning.
She really, really needs to get to the toilet (the muscles in the base of the bladder have declined to the point Amelia feels it coming right at the exit point).
I help her sit on the toilet and get off it.
Lay her in our bed while I have a shower.
Support her walking into her room and physically change her into "day clothes".
Body is incredibly difficult to work with and is either too stiff or loses balance.
Move her to the couch and put TV on.
I go and make breakfast.
Physically support Amelia to kitchen table.
Sit her on a chair and push chair in.
She manages a few mouthfulls of toast or cereal on her own.
Then the tremors, hand to mouth aim and fatigue get too much.
I hand feed the rest to her.
Escort Amelia back to couch and get schoolbags and lunchboxes packed.
Make sure Tom is organised.
He is able to dress himself.
Toilet stop before school or bus, depending on the day.
Physically support to bus or out to car.
Get Tom to school and enjoy some 1 to 1 interaction with him.
Get tea organised and a special afternoon tea for the kids.
Answer emails and Facebook.
Fill out applications for new equipment.
Answer calls from therapists.
Go to Disability Expo's, meet school teachers and occasionally meet a friend.
Research A-T and new equipment on the Internet.
Now I also want my house rid of all the unecessary crap, so that requires lots of time.
Amelia spends every Thursday with me (while I type this she is watching One Direction on You Tube).
Pick up Tom from school at 3:30pm.
Be home for the special school bus at 3:40pm.
Surprisingly it has only beaten us here twice in 3 months.
Physically support Amelia inside and to the toilet.
Take her to the kitchen table.
Speak to children about day over afternoon tea.
Make sure everyone is happy and show them that I am here to listen always.
Move Amelia to the couch or leave her at the table with her ipad.
Get tea ready.
Scott arrives home from work.
Put dinner on the table.
Handfeed Amelia after a few mouthfulls.
Clean up tea while Scott baths both children individually.
He lifts Amelia in and out of the bath (she is 48 kgs now) then takes her to her room and puts her PJ's on.
Take her to wherever she would like to sit.
Finalising end of day in the kitchen while Scott sits with the kids and Tom does his reader.
Watch TV as a family and have cuddles.
Escort Amelia to bed and help her climb into bed.
Lie down and cuddle both kids in the beds, have a talk, a laugh and then say goodnight.
About 10pm Amelia stumbles out of her room needing to go to the toilet.
Very similar to any parent except Amelia is 8 and can no longer walk far on her own without falling over and hurting herself.
She struggles to feed herself.
Scott and I are having difficulty understanding her speech sometimes and she gets extremely angry with us.
We cannot go out without the wheelchair and the walker is really not suitable in keeping her upright anymore.
She has great difficulty socialising anymore and does not smile and laugh as much anymore.
Her world is A LOT slower than anyone elses and everything and everyone slows down around her so that she is still an active participant in life.
Otherwise she would not be able to keep up with what is happening.
And when given the chance, her intelligence is unchanged.
She is just slower to respond.
There is a lot more involved in Amelia's decline, but I think you get the idea from above.
Now this is the other side of the coin.
EVERYTHING above is depressing to me.
So I put a positive spin on EVERYTHING.
Every smile, every laugh means more than anyone could ever imagine.
Today I opened the gates for Amelia to talk to me about her A-T.
I asked her "if she had any questions about A-T".
Her response ............"No. I just have a wish that one day, I will be able to walk".
When I tried to extend the conversation and talk more about the subject she cut me off and made eye contact (something else we rarely do now) and said firmly......
"Mum I just want to walk. Nothing else. Just walk".