Building memories

 Amelia with one of her BFF's

 An attempt at a "family selfie"!!!!


Hello from the deep dark hole that is full time work !!!!!!

I am trying to convince Scott to start writing on here........at least occasionally.
His insight to being at home and the full time carer will be beneficial to many, including himself.

Writing and revealing can be very powerful to yourself as much as for others.

My life has consisted of working 9-5:30 in a Kinder room 45 minutes away for the last 3 weeks.
I have loved being involved with a room full of children and assisting with their education, daily needs and overall development.
It has made me become up to date with all the changes that were made in the last few years in Early Childhood very quickly.
I have little boys that have just turned 3 and are still at that cute, chubby stage and girls who fit into a 3 year old program perfectly. I also have the overly confident boys and girls who, at this time of year, were ready for school yesterday.
I have applied for 3 jobs so far.
To get ANY of them would be a bonus.
They all offer different things to me and our family.
My DREAM job application was to Melbourne Zoo. It is for the position of Education Officer to all the children that attend on excursions. The focus would be on conservation and how humans are destroying animal habitat......something very close to my heart.
The hours and travel would mean this job is perfect for ME and possibly destroy all that we have created in our home environment.
The other 2 are perfect for our family and still me and my passion for teaching young children.
One is 30 minutes away, the other is 10 minutes.

My life is learning about how weekends are sacred now and when I get home from work having cuddles and talking about everyones day.

Over the last few weeks, I have enjoyed watching Scott, Amelia and Tom adapt to the major change in our household.
Scott is learning how "there is not enough hours in a day" to get everything done.
Something that really stands out to me is the way Scott has devoted so much time to each child before and after school.
I was always about organisation, cleaning and tidying ........ and spending time with the kids.
Scott puts spending time with the kids for large amounts of time first.
Something I struggled with.

I am loving watching him still get the household chores done, but he involves the kids.
It requires pocket money to each child and they are loving helping.
Amelia helps fold washing and hands pegs to Scott out at the clothesline. She also empties the letterbox when she gets off the bus in the afternoon.
Tom feeds the animals at night, unpacks the dishwasher with Scott (suggests how he can pack it better!) and cleans up after dinner.
The little conversations, where I need an explanation, are awesome to watch between the three of them.

Amelia's moods are still all over the place and are something we may need to address in the near future but she is still loving her school and home time.
She is very excited about Halloween this Thursday and has her costume out ready.
She also has some amazing friends around her.

Last night we even had a glimpse of the sense of humour we have all missed so much.
Singing is her passion these days, whether she is making up funny words to tunes or just laughing hysterically at her own singing, it is great to see such happiness radiating off her.

So maybe you will get to read Scott's perspective on it all one day.
Till then keep smiling and look after yourselves.

xxx

A Lesson In Friendship

Hello.

Many, many years ago, I was a social butterfly.
Phone calls, text messages, sharing emails and last minute BBQ's were constant.
It was not unusual to jump into the cars with kids and arrive at someones house for a play and a cuppa.
Walking around the block chatting, going to the movies and meeting at a cafe was standard everyday life.

I set up my own playgroup when Amelia was a baby and also had a "social group" at Amelia's Kinder that regularly went out to dinner during the year.

Friends were the same as family.
Permanent.

Over the last few years that has changed.
I think it is partly because I have changed.

My happy, positive exterior struggles to maintain itself.
I prefer to be at home.
It is easier.

There is only one person that can have Amelia overnight now if Scott and I have a function.
To even put her to bed is a struggle for anyone.
It would mean that you have to take her to the toilet, which is embarassing for the caregiver, but more importantly Amelia.
You also have to be strong to support her.

If we take Amelia out with us she is then forced to watch all of the other children having fun.
There is no use trying to help her join in because she will continue to see what she would love to be able to do.
Then the whinging and complaining about "being bored" starts and we end up going home.
Being bored quite translates to "I hate watching this".

There have been many situations in the last 2 years that I am not proud of.
Birthdays, fundraisers and BBQ's we were meant to attend that we just never got to.
Sometimes it is because of exhaustion, Amelia is sick or the fact it is just easier to stay at home.

Lazy, it would seem.
But it is not from our end.

I sometimes wonder whether Amelia's Project has actually brought with it a rather large negative side.
The expectation and pressure from "supporting us" has a massive repercussion for the future.
It is different if  "we" do not come compared to someone else.

We will always appreciate what has been done for us......we have had the most amazing experiences and memories to last a lifetime.

But the situation is still what it is.
It is hard and our social life comes second now.

Nobody could possibly understand unless they lived in our home and cared for our children 24/7.

I also wonder if "our situation" has also caused others to change.
Today I was reminded of the "familiar builds contempt".
People read this blog and my facebook status and think "for goodness sake. Just get over it already. Move on".
They are sick of hearing about it.
That concerns me.

Friendship is a two way street.
Everybody knows that.
But sometimes we need to accept people for who they are and decide whether we want to continue the friendship, even if they are not the ones that make 50% of the contact.
The time that is spent with that person.....is it worth it?
I have a very close friend that I would not be friends with if I had not been persistant for the last 20 years.
I adore her and know she does not call anybody.
I accept that is not a personal attack but just the way she is.
But when we do finally catch up it is awesome!

There are other friends who I have learnt to hold very dear over the years.
You do not see or speak to them often but know they will always be there.

There are the friends who have become distant.
Either they no longer relate to Scott and I, cannot handle seeing Amelia or want to remove the "negative" from their lives.

There are also the friends that we are meeting that we would never have met if Amelia did not have Ataxia Telangiectasia.
Other families who have children with a disability.
Other people who also question what happened to their social life.

Today I received a "jolt" about the type of friend I am now.
A message that spoke of my "lack of effort you made regarding the things I have invited you to".

It hurt. Really hurt.
Rather than get angry though, I saw the way that others are now seeing me.
The opposite of what I was.

My effort to do much at all diminished 2 years, 10 months and 3 days ago.

I have to reassess the person I have become while mothering a child with a terminal illness and decide whether I want to change that persona or just keep those that accept I am still me, just different.

xxx

Where has the amazing life gone? Oh yeah A-T has taken it away.

(The following blog is depressing. But I am ok. Just sorting through feelings xxx)

Mountains are not moving at the moment.

I am trying in our quest for an amazing life but they are holding firm.

I do not know what pathway my writing is going to take tonight but I am hoping that it will give me some clarity and focus.

Amelia is not happy.

She is bored, grumpy, angry and sad.

She is cuddly, affectionate and wants one to one attention constantly.

It is hard.

Really hard.

One minute she is happy and then she is not.

We try to involve and introduce activities but they only end up, once again, showing her what she can no longer do.

Everything is getting harder.

To dress her, to move her and even the ability to fall asleep.

She has really taken to Scott being the house husband, so I know it is not because of that.

She is 10 now.

Time is passing by too quick.

We also have a 7 year old son that is a handful and also wonderful.

His feelings, thoughts and grief need to be handled daily too.

Neither child knows the real diagnosis of A-T and I wonder how long that can be the case.

Recently I returned from a day at work.

I ventured into the backyard to say hi to Tom.

He was running all over the backyard by himself playing a footy game.

"What are you doing?" I asked.

"Playing a charity game" he answered.

"What for?" I asked.

"All the players and fans had to give money to make Amelia's A-T go away" he said happily.

My heart just broke.

A 7 year old is not meant to be thinking and worrying about stuff like that.

Amelia does not want us to talk or mention her A-T.

She only wants to talk about "happy" things.

After telling Scott the other night that she "hates her life", I thought I would try a new approach.

I spoke to her about only getting one life and no matter what your circumstances you need to make it the best it can be.

"What makes you happy?" I asked.

"When I see butterflies, smiley faces and love hearts, it makes me smile" she said.

I guess my printer is going to use a lot of ink now!

I thought I may also set up a "pen pal" type program for her and other A-T kids of a similar age around the world.

It may be fun to get pictures, photo's and information from other places.

Talk to someone who is also wheelchair bound.

Then the usual happens.

I will need to do it all for her.

It is so frustrating for her.

Intellectually she is not affected.

Only struggling and failing at things she used to be able to do.

We had to say goodbye to someone from our lives recently.

They did not die, but we discovered just how frightened and sad Amelia was when around them.

When they did not stop the teasing and sarcasm, after we asked them to, we had to make the move away.

Other people no longer match what we need to be surrounded by.

Some people just do not realise that we cannot associate with people who bring negativity, secrets and nastiness into our lives anymore.

The two gala nights held for us is what we need.

Not the money.............. but the love, the friends, the fun and 250 people in a room wanting to create a better life for a little girl.

I can honestly say that I have bottled my feelings from those two evenings.

When I am feeling alone in our battle I take a deep breath and pretend to breathe in those feelings and take myself back to those two nights.

It makes me feel stronger.

I understand that Amelia is approaching puberty but I do not think any of us can handle the moodiness mixed with her frustration and sadness about her disease.

I have cleaned all week, I have researched teaching ideas.......

anything to distract my mind.

Amelia needs rest and downtime after a busy term 3.

But she does not know what to do.

Today I read, on Facebook, about a 5 year old boy being buried by his mother.

The harsh reality for so many parents.

Yesterday someone said to me "you will be fine. God is good".

In my world, in my REAL world, there is no god.

If there is, he is not a nice person.

xxx

The harsh reality of A-T

We are struggling with Amelia "hating my life".
Above is footage taken in 2010 and 12 months ago.

She is unable to walk unassisted now.
I will post more when I have the emotional energy.

She is 10 years old.

There are no words.

To the friends and family that have stuck by us......Thank you.

xxx

Thailand

Sometimes you need to leave the "mundane" to find the "extraordinary".

Do you ever close your eyes and take your mind back to a time that was wonderful?
Have you ever risked inconvenience and money to experience something memorable?
Below I speak of something indescribable but amazing.
It really happened for us and I am so proud we made the LEAP.

Last year, I booked for our family to go to Thailand.
We all needed something to look forward to.
Or maybe just I did.

Originally, I looked at Fiji.
People that wanted to join us wanted more "night life" so we moved the investigation to Penang, Malaysia.
Unfortunately Penang was not recommended to be "wheelchair friendly", so Scott and I decided to stick with what we knew.
After travelling to stay at a particular resort in Thailand, 11 years ago, we knew this place would be suitable for Amelia and her chair.
It had 5 restaurants, 3 massive pools, large rooms and the whole resort was flat.
Amelia was not to be excluded (and nor were we, because we would not leave her side).
With a massive contribution from a family member, we paid the cost of accommodation and flights.
Accommodation was only $1200. That is so cheap for 10 nights, considering that it included a full buffet breakfast daily. Flights is negotiable for anyone. What are you prepared to forsake to get there?
Amelia, Tom and us are not "easy plane passengers" so we chose one of the best.

Our Limo service insisted on getting us to the airport.
It was a midnight flight, and in hindsight, something we will never do again.
Even though the kids (and us) were excited, 8 hours is a long time to "handle" when you are absorbing minute by minute.
That was just to get to Kuala Lumpar!
Then we needed to wait 3 hours before our flight to Phuket.
Kuala Lumpar is divided into two separate terminals. It took 2 hours for us to realise that we needed to catch a train over to the other Terminal to board the next aeroplane! What a mad rush that was!

I found myself reminding everyone, FOR 14 HOURS, about what we were going to (including myself).

When we finally arrived at our destination, the relaxation began.
Unfortunately "Flight Centre" had not notified the hotel of our disabled passenger, but that did not matter.
Our room was easily accessible and quite large.
The walk was long from the elevator but I told Scott we would appreciate that distance for weight loss with all that we planned to eat and drink!
(I have returned slimmer!).
On the third floor, our view was stunning. Much better from the supposed "disability room" on the ground floor".

The reason of our holiday did not take long to arrive.
MEMORIES. HAPPINESS. APPRECIATION.

As we all gradually awoke on the second morning, we realised where we were.
As a family we ventured down and observed the abundance of food on offer for breakfast.
Omelets made in front of you, pre-made bacon, stir fry, fruit juice, croissants and coffee (just to name a few).
Breakfast was to become an exciting part of each morning and something we would miss when we returned home.

The return to our room each morning only meant a yearning to get down to the pool (one of 3!). We would all recover from the massive breakfast and get our bathers on. Many days were spent swimming. That is all. We did not want for anything else.
The kids loved it for separate reasons so much that we were able to stay there all day.
Many of you know my lack of being able to "just stay", but it was easy here.
Time passed by quickly. Lunch/snack was eaten beside the pool and so were the numerous cocktails!
The cocktails had no alcoholic affect on me.........just the sugar. It enabled me to keep going and have energy for the day. They were only $5 each so they were easy to order!

Amelia was full of happiness in the water.
The freedom of being able to move and just enjoy.
We lost count of how many times Tom went down the waterslide....on the first day!
He made so many friends with both children and adults.
The Thai men adored him.
From the moment we were picked up from the airport (with a prebooked transfer) I was uncomfortable with the way the Thai men "looked" at Tom.
The smile, the looking up and down and the questions they asked him.
Unfortunately it made me extremely uncomfortable.
Within 20 minutes of landing in Thailand, I told Scott that Tom was never to leave our side.
It did not take long to realise they just loved his look and personality.

The fascination with him continued throughout the whole holiday and many commented on "his looks". We got used to it but it gave us a chance to talk about stranger danger with him.

Many of you know about Tom's intellectual ability with "number". The learning experience he received about the Australian dollar compared to Thai Baht was fascinating to watch.
On the second day I had no choice but to use the mini bar "evian water bottle". If we were going to brush our teeth, I needed to open it, until we got to a supermarket.
Tom looked at the mini bar pricing list. He saw the number 150 and proceeded to get very cross that I had spent that on a bottle of water. After explaining that it was only $4 AUD he became fascinated with the whole currency conversion policy.
I even had to download the currency conversion app to the ipad so that he could always know amounts being spent!

Amelia was not as popular as she is at home. I do not think they knew what to do around her.
The staff and Thai citizens were never disrespectful, but over the top helpful.
Looks of concern and assistance towards Scott and I.

As time went by they began questioning her whereabouts. They called her "Mill-ill-a".

Getting Amelia in and out of the pool was a task in itself, but the other holidaymakers and staff around the pool were more than kind in their offers of assistance.

There was a kids menu for the children at every resturaunt in the resort.
They occasionally tried the delicious meals that Scott and I devoured but preferred their fish or nuggets and chips.
It was difficult on banquet nights. The kids struggled to find food they liked while Scott and I had our eyes popping out of our heads.

One evening at 5pm, Tom and I left our room to make the short walk to the beach.
Amelia and Scott chose to rest before dinner.
As the tide went out we decided to venture on to the rocks in the water and go on an "adventure".
As we stepped on to the sand, Tom picked up a beautiful shell, commenting on it's shape. Suddenly claws starting coming out the opening. He screamed and dropped it!
I explained to him about "hermit crabs"and then began pointing out how many there were on the beach in front of us. We marveled at families scurring together and big and small shells moving across the sand.
As we began the adventure on the rocks, the animals caught in the low tide were unbelievable.

It is a special moment I will enjoy with Tom forever.

Amelia loved shopping in town.
It was difficult because the paths and entry into shops was not easy, but there was no way she was letting me go alone.
With handbag ready in her lap she would be waiting.
It was hard on this fat body of mine but we made it fun and always celebrated our bargains!

Amelia and I shopped at least 3 times over the 10 nights and it is a memory I will treasure forever.
It was fun and a time that she relished.

Our holiday was amazing.
It gave Scott and I time with each child and as a family that we will treasure forever.
Everybody is different on "holiday" and I can definately confirm that the enjoyment and stress free time was something shared between us all.
(The Day-spa and many other activities included).

I can understand why people take out bank loans for a family holiday.
The memory of this time will last with me forever and ever.

When I picked up Amelia yesterday for her 2 weeks school holidays, someone said  "are you going away?".
She answered "Yes. I have to work out how to get back to Phuket!".

xxx

How things have changed

Hello!

Recently Scott and I formally "changed roles".
I am now working full time (well almost) and he is officially the house husband.

It is only fair for him to spend that extra time with Amelia while she is with us.
(unfortunately sounds harsh, but it is the truth).
It means a drop in pay by tens of thousands (literally) but one that needs to happen in our complicated and unusual life.

I have had tantrums about going back, internally (and possibly outwardly!) but now I am getting used to it.

Scott is getting used to the role of being at home.
Surprisingly, I am trying to teach him about "what is important and what isn't".
One evening last week he had severe chest pains.
The cause was stress.
He began saying comments like "doing half the job you did" and "stuffing up the kids lives".
He was putting so much pressure on himself to succeed at his new role, he was forgetting to enjoy it and "go with the flow".
He wants to do well and he already is.

The kids are loving the role reversal.
Amelia is extremely comfortable with it, especially after daddy had to stick up for her and "handle" a difficult situation concerning someone else's treatment of her this week.
It has made her feel safe and secure in his permanent care.

Tom is testing the boundaries (surprise, surprise) and Scott needs to learn the fast, firm "nip it in the bud, straight away" approach.
He will learn his own way of doing this.
Unfortunately at the moment it means lots of "butting heads" between Scott and Tom.

I am flattered that Scott asks my advise and uses me as a sounding board.

I am occasionally being called DAD now and I am getting used to it.

I made the bold move last week of letting the Kindergarten teaching agency know that I am available permanently now.
It meant leaving the full time position I had settled into at endota.
I was only helping out anyone who needed it from 9-5 and it was never going to be permanent.
I was really liking it, but for financial security, I needed to make the move.

To say I was petrified to go back to teaching is an understatement.
The first call to relieve was on the Sunday afternoon.
I had to work 12:45-3:45 the following day.
A nice, easy 3 hour shift to remind myself of the career I used to have so much passion for.

For some reason I thought it was child care and had to recover when I arrived that it was a government Kindergarten.
I asked too many questions and assessed the room too nervously but no child were injured or lost.
Success!!!!!

The day after consisted of a phone call at 6:20am.
Half asleep, I did not catch the address properly OR the time!
It was much easier to work though......but was much longer.
(Kindergarten teachers get NO morning tea or lunch break).

Wednesday I went to the Kinder of my dreams.
Perfecting planned and set up the way I used to dream of.
The staff here started to give me advice on getting a permanent position in this area.
It was a long day and I came home slightly excited about the information they gave me, but also nauseous from exhaustion.

My position for Thursday hit the jackpot.
I not only received a phone call the afternoon before, I also fit in perfectly.
The agency employee and I now get along extremely well!
The assistant was similar to me and suggested I needed to get a permanent position in the area.
I was honest about needing to "catch up" on all of the formal changes and she instantly began photocopying me document after document!
My excitement when I got home to research more information created a very late night for me.
This particular Kinder requested me back for the following day, which was a major compliment.
I was able to reduce the 45 minute travel time with a more appropriate route and not feel so much like "a fish out of water" !!!
It was also awesome to hear about the emails and phone calls, not only to my agency but also the particular management, about my style of teaching from this Kindergarten.

(NOTE: Permanent full time would be good in this area. It is full time hours and includes sick and holiday pay. Very European style environments for the children. The children's interests come first and your hours, admin and planning come last. It is all about the kids and no extra pressure or stress on you as the teacher. No committee to over rule you and undermine you).

Anyway......it ended up being a GREAT week!

Lets go back to Scott........

I decided to reactivate his Facebook account.....now he is a house husband and all!
Between him posting inappropriate faces of my apparent "pleasure face" and him getting inbox messages from MY friends, I would say all is going well!
He will not get off it, likes and comments frequently and even puts the occasional status and/or photo.
Just like an at home mum!

He has friends come for a "chat" (I assume this is the equivalent of someone coming for a cuppa!) and expects praise for the clean smelling house!
Dinner is on the table at a reasonable time, lunch boxes are organised and house is reasonably tidy.

Last night he talked about a visit to our local chemist/pharmacy.
He spoke of the employees by NICKNAME!
Today when I entered this particular pharmacy, the owner mentioned that "Scott is no longer able to enter here" while laughing.
"Why" I asked very interested in the answer.
" Because there is too much laughter and inappropriate behaviour from the staff members, including me!" was his answer !!!!!

Anyone else think that being the house husband is the best thing to ever happen to Scott   ????????

xxx

Role Reversal

Hello.
My name is Amanda and I occasionally write about our crazy life and how we live with a child who is very ill.

Tonight I am delirious.
I am tired and my whole body aches.
My brain is all used up.

But I am happy.

Scott and I have had a role reversal.
It is his turn to spend time at home with the kids.
He needs the quality time with Amelia........and Tom too.
Why should I only be given that awesome memory?
No regrets at the end includes Scott too.

I am adjusting and I am quite liking it.
I just wish my 38 year old body would get with the program and handle it all better.

After my tantrum in my previous blog, I decided it was best to charge forward.
So I said my fuck, fuck, fuckity fucks and got on with the job......literally!

I am virtually working full time now.
My employment stretches to 4 different organisations.

Endota asked me to come back and do some relief work.
By the end of this week, it will be 2 full weeks.
I love working there but I am definitely "a different kettle of fish" and do not fit the classic norm of the other employees (many of you will not be surprised!).
The difference?
They are all highly professional and I am not.
My humour is not taken as well, I do a spectacular job at saying the wrong thing and I did a magnificent job at "stepping on someone's toes!".

But they keep asking me back so I must not have stained their label too much!

I am also listed with 2 government Kindergarten agencies (that was my original degree many years ago) and last week was accepted to join a major agency that hires relief staff out to Kinders and Child care centres all over Melbourne.
I have not formalised the paperwork with the final one, but when I do, I will be busy!

But the way my body is behaving, it has taken me back to the very first full time job I got.
It was 1996 and I had just finished university.
I was exhausted then and I am definitely exhausted now.
But it is definitely a happy exhausted.

Scott is now my house husband.
He cooks, he cleans, he looks after the children.
He asks questions, we debrief and I try to explain my "tricks of the trade" after 5 years at home.
The common stereotype of daytime TV and afternoon naps has been smashed to pieces for him.
He is FLAT OUT all day and all night.
He keeps adding to his list of jobs and cannot understand why there is always washing....
"I just got on top of it the other day".

Friday night he even made THE comment.
"Your job is much harder than I realised".

HALLELUJAH !!!!!!!
(women everywhere rejoice).

Scott is awesome and I am very proud of him rising to the "challenge".
(He did insist on driving me to the job interview last week and I questioned "was it to make sure I show up to it, so you did not have to go back to work?!").

Amelia is not adjusting so well.
She is like her mum.
Does not like change.
She just needs time.
At least she is verbally open about it and we can all talk it through.

Scott has said his biggest job of all is ensuring the children are emotionally secure and happy.
With so many changes in this house we have to ensure we have open discussions and explain everything to the kids.

Tom was having difficulty and chose to argue with Scott every morning.
Once I explained the concept of me earning money for the family, he seemed to settle.
The other morning as I left for work and he left with Scott for school, the whole neighbourhood heard him shout "Hey mum. How much money will you earn today?" When I answered him, he gave me a thumbs up and yelled "good work!".

Today I had a "meeting" about THE BOOK!!!!
I now have a formal strategy / agenda and a deadline.
Scott came and is very impressed with not only the feedback but the future.......  the scenario should I succeed in completing it.
The person we saw has done so much work just to help me get as far as possible at this early stage.
Hamish Blake's mum even knows about it!!! (now there is a touch of stardom for you!). This person is an angel.

Tonight as I end and get ready for bed (yes I can no longer stay up past 8pm!) I leave you with a story.

Everyone in our house keeps getting the wrong clothes put on their bed ....... (my pants do not fit Tom, Scott!), so Amelia decided to help him when folding time arose next.
She cleverly told him what article of clothing belonged to who.
As Scott held up MY bra and placed it against his chest, he jokingly asked "Is this yours?".
She scoffed and said..........
"I WISH !!!!!!!".

Speak soon.

xxx

P.s You may get to see the Thailand blog sometime before Christmas!