1 life

Many, many things have happened around me lately.
Conflict, disagreement and inappropriate behaviour are not welcome in my life.
There is always a way to solve an issue........ sometimes that means walking away.

If you are like me and take "on board" other peoples issues and feel their pain then it can make your own life more difficult.

It probably explains why I end up consoling other people about Amelia's condition on a regular basis.
(that is because when I first tell them they do not know our "approach" on this situation we have been forced into).

After recent discussions, I would like to talk about something I am very passionate about......
(This also applies to anyone sad and unhappy)......

1. YOU come first.
Sometimes you make mistakes and sometimes you need to stand up for yourself.
You need to be reasonable and look at both sides in your decision.

BUT it IS just you in the end.
It IS your life and you need to take steps to make it amazing.

2. Sometimes it is necessary to realise that your immediate family (children and/or partner) are what is the most important.
We ALL feel like protectors of our immediate people and they will always come first.

Friends and extended family come and go BUT your children and partner will always be there.

3. Make a stand.
Make changes to create a "good life".
YOU come first and your family.

I am really, truly happy with everything inside my home.
Everything else can build on that.
Friends, extended family members and materialistic items are added items.

Sometimes it is SO important to think and analyze and maybe make changes.

1 life................. so make it one that YOU love.

xxx

Part 2 of reality

Last Friday I spoke of the daily role as a full time carer of Amelia.

I put no "positive spin" or happiness in my description of our routine.

Today I feel it necessary to talk about how wonderful our routine can also be.

Obviously all assistance is done with love and happiness.
It is treated as "normal" in our house.
No one sighs and makes Amelia feel bad.
Tom struggles with the last statement but he has also improved immensely.
He is beginning to learn Amelia's appreciation and smiles makes you feel good.

The conversations, the laughing and the cuddles are constant while going about our daily routine.
The learning about the psychological affect on both children is crucial in this informal environment.
Due to Tom's personality he regularly follows us and participates in conversation.

Now having both children at school, I am able to have not only some "my time" but also time to complete tasks that would take me away from valuable time with both children.

I like to think that I very lucky to be able to talk, laugh and relax with both children.
So what if our mortgage is higher than everyone else's.
So what if we struggle to pay bills and place food on the table.
So what if I have a degree and am unable to earn the extra income for our living expenses.

The time with our kids is so extremely precious.
The memories we are creating and the rapport we have built is so much more important than anything we thought our future contained 10 years ago.

But today I am being selfish and am allowing myself to be sick.
The kids keep jumping on me and giving me cuddles but I will not be firing on all canons.
I have a head cold that has knocked me for six.
A very wise person once taught me that if their is negativity, worry and unrest in your life, the inside of your body can run with it.
It can consume your inner self and make you sick.
With many things happening around me lately I think this may have happened.

Finally a report on Tom's basketball game yesterday.
He is only 5 and is learning the rules and what he needs to do to play.
So far it has been lots of happy jumping and watching the scores.
If he gets the ball he panics and quickly passes it.
I was unable to go yesterday so Scott's face when they returned told me I had missed something.
With a "stone face" Scott told me our happy little man had 2 fouls against him in the game.
Apparently in one of them he sent a child "flying".
When I questioned Tom in disbelief he innocently said "They were in the way of the ball. I wanted to get the ball".
I am sorry, but I have not stopped laughing about it all weekend .........

xxx

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.
Decline is.

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.

 During day..........
Tidy house.
Do washing.
Dishwasher.
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.

Bedtime.
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".

 xxx

Business STUFF

FIRST
Two fundraisers this year for Amelia's Project.
One is 8 days away.

The McDonalds night last year was the first real sign to any of us how big Amelia's Project had become.
I am so grateful to see so many people sharing the details with their friends and family.

To have all these amazing people in one room is extremely humbling.
To know that they are all there for OUR daughter .......... well you cannot describe the feeling.

120 Raffle Ticket books are currently out there circulating.
Kellie Sherry has done an awesome job organising the raffle.
Michelle Clark has organised the entire night. Literally.
And if my cousin, Belinda Plunket, promotes our two fundraisers any more I think her FB account may melt !!

Next Tuesday 22nd May.
McDonalds Karingal.
In store 5:30pm-7:30pm.
Tell your friends (Belinda you do not have to tell any more!).

And make sure all the raffle ticket books are back.

SECOND
A delayed thank you.
A family friend read a blog on here a while ago about my concern with our ancient glass in our windows.
If Amelia was to fall through it, the danger of jagged glass ........... well it would be extremely dangerous.
This beautiful couple, (Ron and Chris Church), organised for "STEGBAR Glass" to supply safety glass on our main windows.
Two very kind men from "SPK Glass and Aluminium" in Braeside were then booked to install the glass "free of charge".
For this we are extremely grateful.

THIRD
It has come to my attention (at the reunion) that I have not spoken about Amelia much lately.
By talking about the sudden need to order a electric wheelchair, new car, car conversion, ramps, handrails around the house, safety glass etc etc etc etc...........

Things are happening fast.

I stay positive and focus on happy things around me.
I will write a descriptive blog in the next few days.
But I will have difficulty writing it without getting upset and also sounding depressing from your end.

But I understand that you want to hear about her day to day life and maybe decline..........

FOUTH
The other fundraiser for the year is The Amelia Night on August 4th.
I cannot possibly express enough gratitude to all the individuals who have organised donations.
Tickets go on sale next week at Mc Donalds.
Tables of 10 or individual tickets are available.
$60 per person.
Payment by cash OR eftpos (which INCLUDES credit card).

But we do need more donations.

Belinda is sending out hundreds of letters weekly to companies all over Australia.
But it is always the local businesses, friends and families that do not hesitate.

If you know someone, anyone in a business, anywhere (I think that covers all bases!) and think that they may be able to help, please let Amelia's Project know.
ameliasproject@yahoo.com.au
Or me.

We really need some assistance here.

xxx

Mothers Day ..... Very hungover.

Last year I remember writing a blog about Mothers Day.
I said that I did not need a "special day" to feel appreciated.
My opinion has not changed 12 months later but having no option but to relax today, due to a rather large hangover, I loved spending a peaceful, loving day with my family.

Yesterday I attended my 20 year High School reunion.
I was hoping it would be a good day and am very happy to say it was an AWESOME day !!!

It began innocent enough.
A beautiful friend came and styled my hair.
Scott and the kids drove Shell and I to the school.
Lots of faces, names and conversation.
Photo's to look at and lunch being served.

The Principal told us that they have never had so many people reply to a 20 year reunion.
I credit facebook for that.
And maybe Amelia's Project a little bit.

I enjoyed my "tour" of the school UNTIL someone asked me "when are you due?".
Stupidly I asked her to repeat the question.
Some of you may remember my blog recently about "emotional eating" and my science experiment.
I did not have time to explain about the scientists lining up to study my sacrifice for people all over the world.
I was trying to work out whether I should laugh or cry !!!

About 50 people attended the lunch.
About 30 people attended the pub.

The pub is where the real fun started.

Everyone relaxed, had a drink and discussed the last 20 years as well as the present.

A lot of laughs, smiles and time to be "just ourselves".

One of the gorgeous girls asked us back to her house where the fun continued.
So hospitable to have so many of us arrive on her family.

Midday to Midnight.
Longest reunion ever.

Today I enjoyed family time like I do everyday.
But Amelia and Tom's excitement to give me their "Mothers day stall" presents is a memory I will keep forever.
So is yesterday.

xxx

Special news

From the very beginning, Amelia's Project has joined us in this roller coaster journey.

From notifying my "Facebook Friends" of Amelia's 5 day long diagnosis to raising $52,000 at our Auction night.
Sharing photo's and stories of our daily life to the monumental voyage to Disneyland.

You have all been through the highs and lows.

Now something else positive has occured and I would like you to share in our joy.

On Monday my parents took me to our local Kia dealer and purchased a brand new Kia Grand Carnival for our family.

Amelia's Project Committee named the purchase of this car in their goals for fundraising this year.

My mum and dad spent $46,501 on a car that we will get in 3 months (it needs to come from overseas).

A massive weight of Scott and my shoulders and everyone involved with fundraising.

With Amelia's motorised wheelchair coming sometime later in the year we still have lots of time to save up for the conversion.

I hope you are just as happy as we are.

Thank you mum and dad.
Love you to the moon and back.

And thank you to everyone on Amelia's Project.
You were definately the first that I wanted to tell !!!

xxx

http://www.essendonkia.com.au/New%20Cars/GrandCarnival_adwords.htm?gclid=CLfluLyp8q8CFQQfpAodInpsYQ

BIG

Today I went to a "Disability Expo" on my own.
There were many representatives from many organisations offering many services.
A lot of information to research and read now.
I ate incredibly fattening "KFC" afterwards.
It made me feel much better.

Yesterday something very BIG happened that affects everyone involved with Amelia's Project.
It is a very good thing.

I do not have "permission" to reveal my secret until tomorrow.

Stay tuned.............

xxx