Searching for Positives

Hello Friends.

Tonight I have been reminded about the fact that a positive can be found in EVERY situation.

The recent disaster of the MH17 plane that was shot done was a shock to us all.
The details of passengers and the wide range of ages, nationalities and humans living "their life".

One story that has played heavily in Australia is about 3 children and their grandfather.
He was returning with the 3 children to Perth, Australia, aged 12, 10 and 8 from Europe, while their parents had a few days alone.
Those children and the grandfather are now dead.

The parents released a "statement" today that told all what we must be feeling for them already.
It is impossible to imagine.
It is incomprehensible.

I was very open at the beginning of this blog........while we were waiting to see whether Tom had Ataxia Telangiectasia.
I said "If he has it too then I will create an amazing life for both and nurse them to my utmost....until the end. Then catch you later".

Tom does not have A-T.
I still dread the way I will be after we say goodbye to Amelia.
Tom will be my lifeline.

BUT we have time.

We know there is an END.

We can treat life differently and appreciate each day in a new light.
We can create and do with "this" as our motive and understanding.
We can have "no regrets at the end".

That is my positive.

We have time.

These parents had no warning or time to ..............
I don't know.....prepare maybe.

But they have lost all their children and a treasured father, father-in-law and grandfather.

They are just.....
Gone.

Please read this link and appreciate what you have...

xxxhttp://www.mamamia.com.au/news/mh17-maslin-family-statement/

 xxx

Hard............. (not about penis's)

Hi Everyone.

A few discussions tonight, so if you can "keep up" congratulations.

This morning I asked Scott to have a "sleep in".
I could see that the wear and tear of school holidays AND children being home sick at the start of term 3 was taking a toll on him.
Amelia and Tom returned to school today.

Before anyone berates Scott, lets look at "our morning"...........
Wake both kids up (they are getting older and no longer wake up ultra early).
Physically get Amelia out of bed and take her to the toilet.
Emtionally support Amelia as she prepares herself for the day...
"When do I leave?"
"When do I get Home?"
"What happens today at school?".

Then we need to vomit.
Yes that is the NEW thing.

This morning as she was vomiting, (after not once over school holidays) , she finishes and says "Oh good. I will be ok today now".
Interesting.
Anxiety?
Yes. I think so.

Tom?
Needs to wake up and do a "finger prick" to check his blood glocose levels.
"My tummy hurts. I need to stay home today".

Anxiety? Yes.

He then needs to have a measured insulin dose....based on his insulin levels.
Arguments ensue....
"NO, not now"...
"In a minute."

(we have to leave for school in 10 minutes and you still need to have breakfast and get dressed).

Mornings in this household are great!
To keep happiness, to keep positivity, to keep happy "self confidence" is hard !!!!!

From what I understand many households are similar.

To be continued.......
Kids Need Dinner.
xxx

Tom - Diabetes Camp

Hello everyone.

Tom and I have just returned from a "Diabetes Camp" 2 hours away.
It was something I begrudgingly applied for.

Why?

It is something SO FAR out of my comfort zone.
To leave MY house, MY shower and MY bed is HUGE !!!
But I knew the benefits for Tom were going to be MASSIVE.
I knew that he would feel "normal" there.
I knew that he would make friends with other children that need to check their blood glucose levels and need to have needles daily.

It did not stop me from asking Scott many times last week if he could go instead of me!

I REALLY struggled to get through the 2 night stay.
I was definitely not "myself".

After 24 hours though, Tom and I had begun to make some very firm friends.
For Tom it was easy......he is a kid!

We both laughed when we walked into the dining room on the first night to discover 25 children giving themselves finger pricks and needles.

I will never forget listening to a discussion between two 7 year old girls...
"Are you the only one at your school with diabetes?"
"Yes"
"Me too. Lets go play".

For me, I made friends after the kids went to bed.
Apparently I am part of the "rebel" group!!
(surprise, surprise!)
This was the group that snuck out to the "designated smoking area".
The following night we all met there with alcohol !
I was very "left out" when I discovered they had all stashed it sneakily into their bags when packing to come.
I , for once, had not!

On the way home today, I finally relaxed.
Tom and I discussed all that we had learnt.
His ability to assess all of the children and information astounded me.

All weekend I had battled with many thoughts.......

1. Diabetes is not as bad as Ataxia Telangiectasia. Get over it.
2. OMG. What are they talking about ? Why do I not know about this?!
3. Wow. All these parents know A LOT about diabetes.
4. Shit. I researched A-T so much. Why have I not researched diabetes to the same extent?
5. God, I am so fat.
6. Carb counting? What the fuck is carb counting?
7. Poor kids ? Ummmmmm.....there is SO much worse......
8. Your kid is experiencing a "hypo" ?! They are 1.3. Shit. Tom has never been that low. That is scary.
9. Exercise, adreneline, food, sickness, insulin dose....... so much affects their Blood Glucose Levels.
10. This bed is SO uncomfortable.
11. Oh dear. Most children have a "hypo kit" in their hands. I did not even pack jelly beans.
12. You need to change your medical team. You SHOULD know about THIS.
13. Tom is asking about "carb counting".
14. Tom gives himself his own needle......YAY!
15. Tom talks to "new best friend" about nightly BGL reading.
16. I am sooooooooo cold.
17. Information about a camp next year for all of these children.....without us parents. "They will make lifetime friends" they say. "they will learn to understand, accept and live with diabetes. They will have fun and do activities like anyone else" they said.

"Sign him up" I say.

The rebels have organised to stay nearby........to smoke and drink!

Now to go shower.
There was NO WAY I was stepping foot in those showers !!!!!!!!

xxx

Hmmmmm

Hello Friends.

It has been a long time between posts and I apologise for that.
So much has been happening and I have been unable to find time to sit down and type.

2014 has been interesting and difficult in very NEW ways.

Our income has dropped by $50,000 per year.
I am bringing in NOTHING, but the value of Scott spending time with the kids is immense.
I am currently teaching part time and loving it.

The value of our situation and the need of everything surrounding it changes everything.

How Scott should spend his life with Amelia is paramount to money.
It is HIS TURN.

I love my Kinder but the difficulties associated with this particular one is HUGE.
I have been employed at a "difficult" Kinder.
People do not like the people employed there.
I have been employed to "change it".

Anyway, as Amelia grows her needs and intellectual thinking changes.
She is becoming heavier to move around.
Her wants are becoming more extensive.
Her anxiety and depression about her disease change and become more apparent.
MY and Scott's need to answer and address these needs become more important.

Scott is a man.
His way of addressing everything is different from mine.
I will love and support him forever, but he is different.

Anyway......
Amelia is struggling with "vomit" on the mornings she has to "got out somewhere".
It is very upsetting and difficult for us all.
Scott and Tom start arguing.
That is hard.

Tom is displaying behaviour that is requiring discpling from Scott and I.

His answer?

"But Amelia is laughing."
"We like to make her laugh, don't we?"
"That is what we do. Make her laugh".

Tricky one.

Tom is 8 and we are having trouble understanding how to parent him....
with Amelia.

New pathway and new life.

Scott has always asked to move interstate to start "a fresh".
I have always said "NO".

I am now wondering with the demise of Amelias Project ( and the nightmares about certain individuals) and the demise of our "support network"......
Maybe it is not such a bad idea.

It would be very difficult but maybe not so bad in the long run...............

This life we have been given is just SO difficult.

I struggle to understand while watching so many others with their "perfect" life.

xxx

Lost the plot

Hello Everyone.

I have started calling this a "boutique" blog.
It does not have a HUGE following but it does have people that care and are not just observing.
The intention was never to have a huge following, but with 250 odd reading every blog, it is comforting.
The intention was to keep people informed about Amelia and those that are sharing this journey with her.... and us.

The contact we have had recently with people, who are strangers, is genuine.
Scott's face makes me laugh.
He is shocked that people come and introduce themselves and REALLY want to say hello.

The past fortnight has been sad.
Amelia was sick on her birthday.
My work has been "interesting" and made me assess (once again) the types of people I want to surround myself with.
Amelia has said repeatedly "I wish I could walk".
Tom's diabetes levels have been anywhere between 27 - 2.
Scott has questioned his abilities at home.

Everyone is being challenged.
Everyone is searching for positive thinking and a way to move forward.

My weight has sky rocketed.
I am currently the heaviest I have ever been.
I actually find it difficult to walk now cause my bum is the weight of a normal sized person.
It is damn heavy to carry around!!
As I have said before, I really need to be an experiment for emotional eating and drinking.

Amelia has had over a week off school.
What began with vomiting is now anxiety and depression.

Today we went shopping.
I finally "clicked" on what her thinking is.

Mum "may not want to go shopping, but once she gets there, it will be awesome".

As I was handing her clothing, towels, Tom's birthday presents and household items........
It clicked.
I looked at shoes, clothing, toys and food.

Get HER (me) to the shops and we will have fun.

OMG.

When I stopped in the middle of Target and suggested this was the case to her...
she laughed uncontrollably.

Hmmmmmmmmmmmmmm.

Tomorrow we are going to try our best to get her back to school.
Everyone (including the staff) are going to pretend tomorrow is her birthday!

-----------------------------------------------------------------------------
Tom worries me.
He will always worry me, I think.

He does not worry me from my "point of view".
He worries me from others point of view.

I know how to communicate, discipline and deal with this unusual kid.
I love him to bits and would die for him.....unconditionally.

This morning, we rolled around in bed wrestling and I have not heard him laugh as much as he did for a long time.
A very long time.

He does not get asked to any birthday parties or to people's houses to play.

He will argue with the magician at his 5th birthday party, because he can analyse the "logic".
He will discuss the children he plays with from grade prep - grade 6 , but will not really discuss his own year level.
He will sit there and do mathematical sums and football stats for hours.

He will get Amelia what she cannot reach for and feed her when she is unable........

We listen to people comment on how he is "a control freak".

Sit with that comment for a minute and imagine why he would be........

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Finally Scott and I.
We are the parents, for those that are new to this page.

We are continually adjusting to our new roles.
Scott the "at home dad".
Me the "working mum".

Scott is the only male I have ever seen genuinely excited by the 2 brand new wash baskets Amelia and I brought home today.
"These are awesome" he says walking past me with a basket load of wet washing.

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Finally tonight we received 2 telemarketing calls.

Phone Call 1
"Hello" said strange accent.
"Hi" I answered excitedly (secretly looking for some happiness).
"Is that Mrs Nicholls?" the lady asked.
"No it is not" I answered correctly due to mispronunciation of name.
"Are you the home owner?" she asked.
"No" I answer seeing an opening for fun.
"Oh. Do you rent then?" she asked.
"No" I answer enjoying where this is heading.
"Is your house free standing?" she asked.
"No. Our house floats on water".
(At this stage I hear Amelia, Tom and Scott starting to gasp and giggle from different areas around the house).
"What? What do you mean?" she asks confused.
"We have a floating house. Our house just floats around and bumps into other houses. All the houses around here float".
(At this stage I am trying not to laugh because Amelia has lost it laughing in another room).
Silence.
"Are you serious?" she asks.
Then she hangs up on me.

Phone Call 2
"Hello. This is David from Microsoft. I am calling about your computer".
(wonderful some more fun)
"Excellent. I am so glad you called".
Silence.
"Really? Oh ok. Do you have a computer?" he asks.
"No David we do not" I answer overly happy.
"You do not have a computer? Seriously? Do you have a TV?".
"No we don't" I answer like I have just won a million dollars.
"You do not have a computer or a TV? What are you doing now?" he asks.
"Sitting here wondering what you are calling about" I answer quite firmly.
He hangs up on me.

ALWAYS find humour in your day, even if you have to used telemarketers to do it.
(Tom and I spoke about stepping out the front for a swim all night !!!!).

xxx

Amelia's 11th Birthday

Today is a very special day for me.

Today I was handed a petite, perfectly formed little girl and told she was OURS......11 years ago.

She was amazing and so precious.
How was I going to hold her and not drop her?

11 years have passed now and I really believe you have changed my whole life.

Through 2 very differents diagnosis's and the heartbreak that follows that.

Through watching your kinder, school and dance concerts.
Through watching you walk and then lose that ability........
Through watching many abilities come and go....

Through watching you speak and stand up for yourself.

We are so proud of everything you have been, are and have become.
We look forward to the future with you.

We thank you for changing our whole world.
The way we view everyday, the life we live and the people around us.

We thank you for coming to us and changing our pathway.

Happy 11th Birthday Amelia Grace.
We love you to the moon and back......
10 times.

Thank you for being you.

xxx

I am ME

Hello everyone.

We have had a shit 8 days.
I cannot describe it any better than that.

Today I had a meeting that made me finally realise how I can change so much of it all.
The meeting was not great or full of praise and good humour.
It was serious and business like.
It showed me the various "types" of people out there.
Everyone is different and there is nothing wrong with that.

I realised part way through the meeting that I was viewing this situation differently than I should.
I do not have to like the people I work with and they do not have to like me.

Putting every ounce of time and passion into my workplace is not in my future now.

I have chosen to re-enter the workforce for the benefit of my WHOLE family.
It is not for anyone else but ourselves.
It has been a very difficult adjustment at home, which has now come to a climax through other means.

Today I was reminded, by myself, that my work is not like my home, my family, my friends.
Work is not going to be the happy, friendly place I envisaged.
I can be those things, but I should not expect that from others there.
And vice versa.
I cannot be the person someone wants me to be.

Moving forward I choose to be professional and business like only.
I will save my own personality for home.

This is not what I have been told to do....
This is what I choose to do.

Work is work.

That is my new motto.

Why invest so much time and energy into something when there is SO much more to focus on in your life?
Something like "life" itself.
Something like family.

I did not choose to be friends with these people.
They are work colleagues and only that.
Sometimes work relationships develop into friendships (and I have been very lucky to have this happen Gail, Jenny and Bec) but they were never meant to turn out that way.

Moving forward, I will continue to be passionate about my group of children, parents and assistant....but no more.
I am not required to do more than that.

My natural instinct is for more, but it will now have a brick wall in front of it.

I am relieved.
The pressure and expectation from so many different angles has now evaporated  from my shoulders.

The difficulty of putting so much into my workplace and feeling guilty with my level of input at home has now disappeared.

That is the result of my soul searching for the day.

I am a different person these days, because of Amelia's diagnosis.
I do not stress or worry about "small things".
I want to create an amazing life for myself and others.

By investing so much in "work", I forgot about this.

People keep telling me I am "so strong".
Two times today I heard this.
I disagree.

Today I was "accused" of being "over sensitive" and "take everything to heart" by one person at work.

That means that I am not strong and I do not apologise for that.

I am ME and I am proud of ME.

(We will discuss Scott's "convulsion" last Thursday, Tom's hospital admission on last Sunday and Amelia's 11th Birthday on another day).

Be proud of who you are....especially after outside analysis.
It may take some in depth soul searching, but it still makes you, YOU.

You cannot walk into a room of 60 people and like them all.
Just like it is impossible for all of them to like you.

I have a very special friend that may get pregnant soon.
The month she has the baby, I am there.

That is something to be excited by.

xxx