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!

Thank you

Thank you.

Thank you for the messages after today's blog (scroll down).
Thank you for all the comments and messages.

Thank you to Paula and Dianne for coming over.

Thank you to the original movie "GREASE".

Thank you to Amelia's expression of "my parents have lost the plot" as they danced (with their neighbours) around to "grease lightning"!!!!!!

There is hope yet!

xxx

Amelia's "they've lost the fucking plot" look.

Bare with me

I am angry, sad and tired.
I am all of these things at once everyday at the moment.
I am trying so hard to find the positives in situations but I struggle to even smile right now.
Laughter is non existent.

I feel selfish and I know many of you struggle with exactly what I am struggling with right now.
We have just returned from the most amazing holiday (blog almost finished about that) that many of you will never have the chance to enjoy. I feel selfish that my worries and complaints are nothing compared to so many of you reading this. But I think the holiday may have exasperated my thoughts. I liked the person I was on holidays. I liked spending so much quality time with the family in an environment where everything was exciting. The weather was warm, the people friendly, the food awesome and the days fun. We were all so happy and relaxed.
It is sad being back home.
Scott has even mentioned moving to a warmer climate so we are more motivated and able to spend time outdoors.

I am pissed off that this is not the life I envisaged for myself and my family when I was younger.
Scott and I were on pathway of promotions, house, cars and holidays.
We were not meant to watch one of our children disintergrate and all of us struggle to stay afloat around her.
I also understand that no one could really understand "our life", just as I would not try to comprehend anyone elses. If you do not live it, you can neither understand or judge it.

Obviously there are issues I need to deal with that have arisen recently.
But this is how I feel right now and I will not apologise for it.

My mind is in overdrive and I cannot sleep properly.
If I take my sleeping pills or self medicate with wine I apparently snore like a trooper and keep the whole house awake.
The house looks and smells like a rubbish dump and I have absolutely no motivation to do anything about it.
Just keeping up with the washing, dishes and food on the table is difficult enough.
Our carpet is covered in stains that arise from having pets inside, something that will always be the case. Animals as family members can be a saviour on many levels. We want to rip all the carpet up and replace it with floorboards. Easy to clean. But that requires money that we do not have. Our floors are disgusting.

I am trying with all my might to get through this BUT find the tiredness always wins.
It is not depression (been there, done that) but an overwhelming feeling that I have had enough. There is also the feeling that I will come out the other end positive. I have succeeded many times before so my past success rate is promising!

We have a daughter that constantly says "I want to be a normal girl" at the moment.
She consistently watches other people do everyday activities that she would LOVE to join in with.
She will look at us with tears in her eyes and plead with us to stop the A-T that is ravaging her body.

Her feet have started hurting whenever she has shoes on.
Her back is starting to curl when she is sitting.
She needs help rolling over in bed.
At 10 years old she cannot walk, crawl, shower or toilet alone.
To type on a computer is near impossible now and the concentration to work an ipad unbearable to watch.
Food and drink is always knocked over and the coughing from swallowing more frequent each day.
Her legs are no longer bearing the weight of her body when we move her and frequently collapse underneath her. Our backs and hips try to take the brunt of the fall.

It shouldn't be this way.
Our life should not be like this.

When Tom has a meltdown over nothing and argues with us like he is a lawyer (for and against is always communicated to us) and when he talks about "Milly could walk then. Milly could stand then. Why do I always have to move for Milly?".
When Amelia was being defiant with Scott recently and he had to speak firmly to her, Tom yelled at him "She cannot help it. She has got A-T. Leave her alone".
He has never seen her disciplined until recently. He needs to learn that she can still be difficult when it has nothing to do with her A-T. He has only ever seen himself being disciplined and everyone protecting and defending his sister.
He needs to learn that we cannot do many things that other families do because of Amelia's condition.
It is almost impossible for us all to go for a walk around the block.
All credit to him though that he has discovered a way to play with his sibling that both enjoy : Tom is the comedian and Amelia laughs hysterically.

It is not fair on both children that we are in this situation at all.
It is not all about Amelia.
ALL of us are affected.

Scott is no longer working, partly because of Amelia's A-T.
We decided that the unhealthy environment at his work place, full of derogatory comments, blame and bitchy high school behaviour, was not what he deserved to be a part of 5 days a week.
We have enough to deal with at home.
He does not need to continue being around people like that.
After 3 years he took control of his "amazing life".
I am proud of him for doing that.
Not many people will understand due to the old fashioned view of the "male being the breadwinner".
But not many are in our situation.

My equal opportunity attitude has taken over and I realise the importance of Scott spending quality time with the kids.
I have had my time at home, it is his turn now.
He deserves it. 
Many of you are commenting that you neither recognise or can believe the change in Scott in the last 2 months.
He is happy and fun and wacky now.

But we need an income.
Unfortunately endota have decided to change their plans for "workplace childcare".
So I need to use the degree I got many years ago and get out there and work.
Scott is capable of managing the house and kids.

Problem?
I am not good with change of routine.....or any change for that matter.
I do not want to work. Contradictory to what I speak of above, I know.
I have not worked for 5 years!
Thankfully my motivation has just started to return to get in a room full of children after my first relief job call yesterday.
But I had established a wonderful system of running the house, managing teachers/therapy specialists, cooking and having mental health days.
I am moving from days alone to days full of interaction and noise.
But I loved teaching before our life changed.
I love kids and the innocence they represent.

Change.
I have trouble with it.

I am grateful that my previous work colleagues have embraced my re entry and are enthusiastically welcoming me back. That is showing signs of being contagious.

But I was never meant to go back.

Change is difficult for me.

And finally ...... money.
If we did not have this massive mortgage to pay then the stress overwhelming us right now would mean that we could focus on a positive life.
We could focus on the kids and ourselves.
We could enjoy our time with them and establish the memories and lives we so eagerly wish for.
But as well as looking at Amelia's future and Tom staying as emotionally stable as possible, we need to earn a substantial amount of money just to live.
Selfish and unrealistic, I know.
So many of you are used to my honesty and anxieties that your comments of "you will be fine" are started to sink in.

Everyone of you is in that situation, I know.

If only money grew on trees.

Please take this blog as you wish.
Remember I am honest, not depressed or suicidal.
I just tell the world how I feel.

Look forward to the happy blog of our holiday soon.

xxx


P.S Oh and one of our fish died (just wanted to add to the negativity!).
P.P.S Feeling better already after getting this off my mind :)

From happy to sad

Hello everyone,

Last night I wanted to write about something that happened with Amelia but did not think it appropriate to rain on Tom's parade.

So here goes.....

While Scott was cleaning up after dinner last night, I began the nightly ritual of preparing Amelia for the shower. I need to undress her and assist her to the shower chair and then personally shower her. Scott then comes and dries her and puts her PJ's on.

Last night brought the usual stumbles and lack of balance. The swaying and sometimes falls are standard.

But last night something happened that broke my heart.
Amelia began crying.
She said angrily "I hate A-T. I wish I didn't have it. I just want to be normal".
She said it over and over again.
Scott came down and all we could do was hug her.
Hug her and tell her it is ok to feel like that.

We have not heard her say it for a very long time.
We have not seen this frustration, sadness and anger in ages.

We let her cry and let out all of the pain from within.
What else could we do?

Another extract from the book.......

The colic did not take long to begin. The night after we come home from hospital actually. Horrible screaming and arching of her back. This little baby was in so much pain and no one was able to stop it happening. The memories of standing in her room and rocking her. Holding her against me and trying to soothe whatever was causing so much pain. Scott would go to bed and struggle to imagine how the baby and I would survive the night. Mentally, I would take myself to another world and just switch off from the actual one. I could not put her down because I did not want her to suffer this alone. My role as her mother was to protect her and that did not mean placing this tiny body in a cot and walking away. “It will stop soon” the doctors kept saying

At 4 months of age it did stop. I will remember the day forever. Amelia was lying on a triangular pillow on the floor. It was next to a window and the sun was shining in brightly on the room. As the daily jobs were now something that was my only life, I was busy around the house. In a moment “IT” happened and has never gone away. I walked past our baby and she arched her neck to look at me. As I looked into her eyes she gave me the biggest smile that melted my heart. My feet stopped and I sat beside her and began looking at her in a way that a mother should look at their child. Her eyes and her smile felt like a comfort liquid flowing all around my body. That is the day that I learnt the saying “I would die for you”.

 

xxx

Tom and his footy

Hello Everyone,

Last weekend Tom's football team "The Melbourne Demons" played in the usual weekly round of games.
They have faced a lot of controversy this year in regards to their bad form.
They have lost many games........miserably.
Comments like "going to watch a team play while Melbourne watches" has been standard.
Tom has even resorted to saying "I am just going to watch the demons get thrashed".

Last weekend was different.
They began the game the same as normal.
The difference last weekend was the demons kept up with the other team and even stayed ahead the whole way.
Very unusual.
It never happens.

This poor child watches his favourite team day in and day out and watches them lose.
He gets all of his fan gear on and goes to watch them lose alone.
Last week was different.
Second Quarter meant they were still in the lead and ....... OMG the third quarter was the same.
This is unheard of !!!!!!
Tom was in shock.
Scott was in shock.
He had chosen to join Tom and celebrate a lead for once.

At 10:17pm...... THEY WIN !!!!!
The Melbourne Demons actually won a game !!!!
Tom and Scott were bouncing around the lounge room hugging each other and high fiving.

My dad who has been a massive AFL fan (and primarily Essendon Bombers) supporter since the 1950's, apparently lept out of his own recliner and punched the air and cheered........for Tom.

Friends were sending messages and texting, just so happy for Tom.

All of these adults did not really care about that particular team, but that night meant everything to Tom.
Watching his game, the weekly ritual, was a massive surprise and brought great excitement to his little face.

Love my little man and all he brings to this family.

xxx

Disability Care Launch

Hello everyone,

Very big day today.
We had to drive our "little star" to Geelong.
That is about 90 minutes drive time for us.
After much complaining, from Tom, all week about attending we left him with my parents.
He is not well but dislikes any long drives since the car accident two years ago.

Go to the link below and read the third blog on the page (the bottom one).
It may explain our sons fear of driving now.

http://ameliasproject.blogspot.com.au/2011_07_10_archive.html

Anyway today Amelia, Scott and I drove to Geelong Town Hall.

When we arrived there were many people in a reasonable sized room.
One hour of speeches (lots of politicians patting themselves on the back) and one lady in control of the whole thing.
This one lady was just like you and I and was just so excited that something she had been advocating for has come to fruition. She kept throwing her hands up and excitedly saying "We did it".

There was no famous people (damn!) or TV cameras at our launch, they were in Newcastle, where Kevin Rudd was.
But some of the others on the commercial were at our launch.
It was an absolute pleasure meeting them and their families.

There was lots of  "free food" and I made sure I tried EVERYTHING !!

Have received some more interest about the book today.
I am up to the tenth chapter.

Speak Soon
Amanda
xxx