work / life balance

What an interesting moment in time this is for myself and my family.
APPARENTLY I am not allowed to talk about work on social media, so lets talk about other things......

Self assessment on yourself as a person ???
Assessing where you are and what you have achieved at this point in your life ??
Looking at what type of person you are and how you can change or adjust??
What kind of day to day life you want ???

Yep that sounds good.

I ALWAYS assess everything that I do.
Always stand back and wonder whether it was the right thing.

Work aside, because I am not allowed to talk about that, my social life has taken a new kind of twist lately.
I can talk about that because it closely affects Amelia and Tom's life.

Recently we have been getting together with people that are kind of new, but kind of not, in our lives.
"Meeting with" means talking, drinking, eating and spending time with.
They are not judgemental nor do they come to us with preconceived views.
It appears they just accept us for US..........post EVERYTHING.
The new US.
Post Amelia diagnosis and everything else.

We have fun.
Probably too much fun.

Saturday night we attended a Trivia Night for Amelia's Special School.
I relaxed and had fun.
The next day, I regretted making a speech from a "parents perspective" in front of 350 people.
I was worried that I put a "dampener" on the night.
It was spur of the moment and I ....... well........ I just went with it.

I explained EVERYTHING.\
And I mean everything.

I wanted everyone in that room to understand what kind of children they were there for.

But now I deeply regret it.
I should have just stayed in my seat.

When I was growing up, I knew someone that drank alcohol and had to be the centre of attention.

I DO NOT WANT TO BE THAT PERSON.

I feel like I may have been "that person" Saturday night.

Self Assesment.

Tonight a compettition is occuring in our house.
Who can make the best Milkshake.
Amelia has always been the winner........
but tonight she has challenged us all.

Tom said to me "Find out which one is hers. She needs to win cause she has AT".
I said "No. The best one needs to win, but so far she makes the best one".

Tom is amazing BUT special needs does not always need the sympathy vote to win.
The BEST can sometimes just win alone.

Work AND home life is tough but I am thankful that Scott is here for Amelia's and Tom's emotional stability.

xxx

PS Has anyone got a really amazing chocolate milkshake recipe.
I need to win.
LMAO.

Diabetes

A funny thing happened today.

I stayed home (on what is not a work day anyway) to try and recover from a delightful chest infection.

Juvenile diabetes rang to ask how our family is coping with Tom's type 1 diabetes.
As I explained that we are fine she commented on it being a "major shock and one we must be struggling with".
The realisation then hit.
I could not help but laugh at the lady on the other end. (Quite rude I know).
I then proceeded to explain that Diabetes is really nothing in the grand scheme of things in our lives.
The main negative was that it happened on Christmas Eve.
I explained Amelia's disease BUT then I explained Tom.
When Tom is not feeling 100% he insists on doing a finger prick and blood glucose reading.
He will then tell us what he needs to have to eat depending on the reading.
Long lasting carbs or fast acting sugar.
He knows which products give him the substance he needs.

Tom is 7 years old.

His behaviour and social skills are improving greatly and ....well.... I am very proud to say he is my son.

In this phone call today, I said we were fine and that dealing with a rare disease that IS terminal is what we compare it with.

So glad that I am over the meltdown and depression after Tom's initial diagnosis.

HE (not god, Tom) has shown us it is no big deal.

HE (once again NOT god) was given to us for a reason.

The is kid is going to be famous one day, even if it is just amongst family and friends.

xxx

2014

Hello Everyone.

School is back.
Work is back.

Routines are being established.

Scott began the year by typing a magnificent "document" explaining diabetes to Tom's new teacher.
It included when to test his blood glucose and what to watch out for.

So proud of him.

He also began the year with checklists, getting up early and keeping the kids calm with their first day jitters.
When we all arrive home the house is tidy and organised.
Love it.

Tom has adjusted back into school easily.
His blood glucose levels are all over the place, but we expected that.
The excitement, level of exercise and stress can all affect levels.
No doubt his insulin doses will need to change in the coming weeks.

Tom has also come home, proud of his new "social skills".
He is excited that he is maturing and recognising where he needs to change.
Tom is excited by the new friendships he has started developing.

Amelia has adapted to "change" fairly well.
So many of her friends graduated to secondary last year, so this year Amelia and Jackson need to find new friends.
Finding new friends at a "special school" is slightly different than mainstream.
You need to learn communication methods and personality types.
There are children that have "triggers" for angry, upset or scared behaviour.
There are children that "think" age appropriate but cannot communicate like everyone else.
There is that "connection" you need to make to establish and enjoy a new friendship.
Amelia recognises all of these issues and is hoping for it to happen sooner, rather than later.

I have started a permanent part time position and really think this place chose me, rather than I chose it. My head is now above water.

Hope everyone is enjoying their 2014.

xxx

Still Pro-active

My brain is in overdrive.
There is so much happening.
Lucky I just had a weekend of sleeping, sitting on a couch and filling my mouth with food and drink!

Yes people. You heard that right.

My husband threw me out on Friday afternoon.
Told me to go to my parents empty flat in the city and not come home until Sunday.

I LOVE LOVE LOVED IT !!!!

Just what the doctor ordered.

As I was leaving Tom became very clingy (normally it is Amelia).
The kids have become very used to the WHOLE family being at home day and night.
Despite my mother guilt, I was able to say "I need to go so that I can be a better mum next week".

Both children accepted this comment and enjoyed a fabulous weekend with their dad.

I, on the other hand, read and became obsessed with a new TV show on DVD.....
Friday Night Lights.

Scott had both kids on his own while I lived the life of laziness.

Sunday night, Scott's best friend from Primary School (and his wife), requested both of our children for a sleepover.
I returned from the flat to help back their bags, drop them off and then go out for tea with my husband.

Something like this appears so small........ but it is actually HUGE !

No responding to Amelia's calls of assistance and what Tom should eat.
No helping Amelia to eat or drink and when Tom needs his next needle.

Just PURE adult time and adult talk.
(Not dirty for those with dirty minds).

The novel of information that Scott read out before we left was bordering on hilarious.
What both children "need" and how to look after them IS a novel.
It was wonderful to see Scott take charge and make sure everything is understood for both kids.

Danny and Donna are such amazing friends.
With two young children of their own, they also took on ours.
I will never be able to explain the effect it had on Scott and I as parents, a married couple AND as individual people.

On Monday, Scott had a meeting with centre link (government assistance in Australia).
A special person chose to help us work through the maze of what is available to us.
She works there, so that helps.

Scott walked in to that office with a folder FULL of forms filled out (with the assistance of this friend).
It is applications for things that we had never heard about.
This angel spent time on her holidays, HERE, doing work.
We will be FOREVER grateful.

He came back out of centre link in shock.

We have had no income since I stopped working on December 6th.

From what they told him, over 2 hours, we will actually have enough money to pay the bills now.
We will not lose the house.

Scott and I do not have the financial stress that has been causing so many arguments.

So different than how we planned our life.

No one will ever understand how this house is like a hospital ward.
Needles, toileting, eating, entertainment/activities and emotional stability.

But as I said to Scott Sunday night......
"We are good people. We have been handed these two children for a reason".

Amazing life, no matter what.
Amazing life.
We can do this.

xxx

The ladder

Big Day.

Today began with swimming at Nana and Poppy's.
Amelia decided that she wanted to get out of the pool (very hard when she is 60 odd kg) walk around to the side of the pool and JUMP in.
This is huge......not only on my back!
She is facing her fears.
A task that was so very simple 2 years ago is now something that scares her.
Due to her physical skills, once she initially sinks, it is panic stations when she cannot resurface again.
After much encouragement and plans about "how to handle this".....
SHE DID IT !!!!!

6 times later and I took refuge in the Volteren anti- inflammatory at home !!

After 2 hours of swimming, her legs no longer worked outside of the pool.
But Amelia was happy.
That is what is important.

We had to return for a meeting with one of our "guru" specialists.
Amelia's Private OT.
Someone that has helped us in so many ways.
She reads this blog, when she wants to know how we are traveling, and offers assistance when the time is right.

Today's meeting centred around respite care (within the home and out).
We discussed our "comfortability" with strangers caring for Amelia and they explained how "friends" and people we know could assist.
They also discussed funding options

We talked about disability art classes (Amelia's passion).
Other organisations were mentioned for camps and activity programs.
There was a discussion about sibling support and assistance (Tom).
There was also talk about the fact that we have no income (use our Superannuation).

In there somewhere we talked about a new bed and dining table chair for Amelia, so she does not fall off the chair at meal times.

Centrelink and Physio "guru's" are occuring in the next week.

I am climbing that ladder to be positive again.

One life people.
One life.
Wallow in self pity and then take the bull by the horns.

xxx

xxx

Was just looking at the photo at the beginning of this blog.
Wow....she is absolutely stunning.
Love her to bits.

Amelia was very difficult when Tom was in Hospital, but it wasn't because of her own fears.
Her behaviour in Hospital, after we returned home and through our discussions......
it is something so much more.
Something quite wonderful about her actually.

She has "Empathy".

Amelia taps into other peoples feelings, emotions and situations.
The most obvious moment has been in the last few weeks.

On Christmas Eve, Amelia did not care that she was at Nana and Poppy's.
She only cared that Tom was in hospital.
She only cared that Santa visit him there (no consideration for herself).
Needles, pin pricks and blood tests made her FEEL for Tom.
She had to leave the hospital.

When she heard that he had given himself his first needle in hospital she asked Scott to send in a photo from her new "mood calender".
It was a photo of her holding a picture of a face.
Underneath is said "HERO".

He was beside himself happy.
Tom immediately left the room to tell all of the hospital staff.
It was a real indication of his love and admiration for Amelia.
SHE was proud of HIM.
Everything that he witnesses her struggle with daily, and SHE was proud of HIM !!!!

I am regularly told of people that feel a "pull" to Amelia.
People that have a spiritual connection that can see those that have passed standing around her.
Guarding her.

These are always strangers approaching me.

Remember the man at our local shopping centre that placed a hand on her head and began humming a chant?

This week I became "proactive".
I have organised a meeting with one of our medical "guru's".
I want to know what disability and government assistance is available to us.
Scott and I need help in so many areas.
Financial is definately one.

The children have expressed an interest in participating in activities outside of the home.

When Amelia was first diagnosed, the only assistance that was constantly offered was "respite".
The thought of Amelia staying in an unfamiliar house with people she did not know has always been a big no-no for me.
We are now beginning to hear about funding available to choose our own carer and choose where and how she could have fun with someone else.
Recently Amelia returned from school and angrily demanded to know "why Jackson was going on a camp to Phillip Island" with a disability organisation.
I explained to her my reasons for not enrolling her and pointed out her difficulty in leaving Scott and I at the best of times.
Lets just say that I enrolled Amelia in that program this week.
It also offers a holiday program with days spent at wildlife parks and art classes.
She was accepted immediately because of her disease.
She is very excited about future adventures and I am realising that we have to begin outsourcing entertainment for her.

We have also discovered that Tom has camps available to him through Diabetes Australia.
(Imagine a whole group of kids having to do finger pricks and needles!).
He has now been enrolled in a 3 day camp in June/July.
Scott or I will be attending because it is his first one.

Tom is also attending his first Diabetes clinic on Thursday.
Amelia's clinic is 3 hours away by plane, Tom's is 10 minutes up the road!

As I was already on a roll, I rang our case worker at Very Special Kids.
I have booked the whole family into a cottage, in the country, on a farm for the near future.
It is a long weekend and all accomodation costs are paid for by VSK.
While we were at it, we also booked into another cottage they own, in the country (opposite direction!).
That one is not until the end of the year but is for a whole week!

Working out the maze of benefits available to us has become easier due to a friend working in the industry.
Should I be excited that we will have 2 children on carers payment ?
No. I did not think so either.

Finally thank you for your comments and concern regarding my comments in my last blog about Scott and I.

It is only because we love each other so much that we have to acknowledge the toll that all the stress and heartache has done to our relationship.
We love each other enough to contemplate becoming happier people for not only ourselves but also the children.

xxx

The Turning

After my lost post, I have received many messages to stop apologising.

I find this very difficult NOT to do.
I come one here and whinge and talk about my inner most thoughts.

People meet me for the first time and say that they are actually genuinely surprised that I am reasonably "normal", if that is possible for anyone in this day and age.

During the last few weeks it has been hard to hear of other peoples wonderful Summer/Christmas Holidays.
Seeing photos of amazing places and family memories being built does not help this depression that has taken over me.

I would say that I have consumed enough alcohol recently that I could probably have opened a bottle shop!
Cigarettes? Well.... my lungs ache.

Distructive behaviour it is called.
Definately a coping mechanism.

My whole world has been turned upside down.
I was coping to the best (or end) of my ability with Amelia and when I began working again.
This seems to have tipped me over the edge.

But in the last 2 days I can feel the ROAR happening again.

It is a roar that I have felt many times in the last few years.
A roar to battle and overcome this force that is determined to win at all costs.

I am better than it.

As Tom challenged me to a game of cricket today, it was represented in a different light.
I savored and relished in it's feeling of battle.

I can battle outside forces (like Tom winning at a cricket game!).

The last few weeks have been some of the lowest I have ever experienced.
Without being TOO honest, Scott and I have discussed separating.

There is only so much you can do.
Only so much you can cope with.
To separate would give time out and a chance at another inkling of life.

But we love each other.
We were together before the kids came along.
We are childhood sweethearts that battle together.

I am preparing to win this newest battle.
I am preparing my armour and weapons.

Bring it on Universe.

xxx