Depression

Hello dear friends.

I am going to attempt to write a piece on something very close to my heart.
It comes from many experiences from those around me, both past and present.
It comes from my own experiences.

I have battled with the decision on whether to write about this or not, for a few days now.

It will not be correct to many, but it is to me.

The death of the very famous Robin Williams has rocked many of us.
He was like the "uncle" you wished you had.
He was kind, a genius in comedy and someone that appeared to love everyone.

He made everyone laugh with his humour.
It is like we all knew him.

He is the LAST person to have depression......surely?
He had all the money in the world, a beautiful family and a successful career that any actor would dream of.
Surely he could fix his depression with the rest of the world at his feet????

These past few days, I have read many things that made me question whether people really understand depression.
I am talking about REAL depression.
The one that is with you for life and not brought on by hardship, a difficult situation, a period of time that will improve.
I want to talk about the one that means that your brain is incapable of releasing the happy hormones on a daily basis.
The depression where the chemical imbalance in your brain means daily life is a struggle.
For some people it can be for short periods at a time....others longer periods.
As with everything in life, each individual, with depression, is different.

Some people seek therapy and this can sometimes help.
Some learn to create their own coping mechanisms.
Some just keep putting one foot in front of the other to try and continue the daily grind.
A lot of people with depression always have a smile and function at what is considered an acceptable level.

You may never know that your best friend suffers from it.

What is incredibly interesting is that most "outsiders" would never know what these people are dealing with.
It is who they are and many have learnt to "mask" a difficult period.

The difference of long term, or life long depression compared to a shorter term depression is these people know it will come back again.
When and where is impossible to determine.
You just know it is there.

There is also the "situations" that can cause depression like anyone else.
A double whammy so to speak.

For outsiders to say "move on", "get over it" or "cheer up" is not helpful.
It is the brain controlling it through the release of hormones.
Medication can help but it is also a matter of finding the right one and the right balance.

The best quote I read this week was from another famous actor... Ricky Gervais.
 Telling people with depression to "just snap out of it" is about as useful as telling people with cancer to "just stop having cancer".

Society and individual people in general are confused about how to handle people in a difficult period.
I cannot answer how myself.....
except to say be there.
message even if they do not repond.
call even if they do not answer.
do not pressure, just say you are there and you care.
be non judgemental and show them that you are.
understand that they are still a person who is worthy of your time.
show them that.

Depression is quite often hidden from others due to the silent negative stigma towards it.
People look at you differently.
People treat you differently.
People are wary.
Employers are hesitant to treat you equally.
Friends think you may not be as much fun.

To search for the positives in every difficult situation is paramount.
"oh. I am tired....... Maybe my body needs to rest so I can function better in the future".
"Tomorrow is a new day".
"We will stay home today. It will give me some time with family or catch up on movies, TV shows or sleep".
There is a positive affirmation in everything.

Lots turn to alcohol and drugs.
The endorphins they bring, even though short, are a welcome relief.
A feeling of happiness, being numb and in a different "head space".
But that only exasperates the depression.
It adds to the feeling of sadness when you come down off them.
But it can be hard to get to the point of realising this.

I can only guess what it must be like when you get to the stage where suicide is the only answer.
Some call it "selfish" or being a "coward".
I can only imagine it is when someone is at the bottom of a deep, dark well and can see no way out.
They have tried so many options.
Had so many negative interactions with those around them and possibly see themselves as a burden.
The feelings of pain within themselves for not only themselves, but those around them must be overwhelming.

People live with depression everyday.
It is not a contagious disease.

I have had many people get cross with me or criticise the different facets of my own depression.
A lot of us "joke" about the things that actually personally upset us.
Subjects we just cannot move on from.
Sometimes you go through a positive phase of thinking and then BAM the negative kicks in.
Depression can make you say and think things that are not sensible.

My weight gain would be my own personal example.
I hate my body.
That is just something I have grabbed hold of and cannot let go of.

I do not know all there is to know about depression and some may disagree with what I have written.
I am just grateful that we live in a house where people know they are welcome to just come and talk.
We are lucky to talk about depression with those around us suffering from it.
It is not all negative talk. A lot of it is humour.
You have to laugh about it sometimes!

I am accepting of my own depression and having those close to me just being there when I am sailing through a difficult patch.

Now to plan my 40th Birthday.
It will be at a massive trampoline warehouse and everyone has to wear superhero constumes.
It will be hired out just for me and those I love and care for.

That is sensible thinking.....right ??!!

xxx

Independence, aliens and bums

Hello Friends.

A conversation a few months ago between Amelia and myself....

"I want to go on a camp" said Amelia.
"Ok. But what are you thinking because your school does not do it for a few years" I answered.
"Some of my friends go. They go on day trips during school holidays too" she says.
" I will look into it" I said.

At the time I was thinking " absolutely no way", "this will NOT be happening" and "treat this delicately with Amelia".
My own dad came around and after being told the details from Amelia stated, "You won't be going to that sweetie".
(he knows what we are like!)

WHY?

Whenever you have a child with a disability all the support networks speak about is "respite".
Respite, respite, respite.
We do not need respite.

Scott and I do not need strangers to look after our child while we have "timeout" or time with Tom.
Scott and I cope beautifully giving each other "timeout".
We have my dad. That is enough "respite".

There is an organisation that offers quality time for disabled children....
It is not just respite for the parents.

Amelia attended her first camp last weekend with this organisation.
It was not our decision.
It was hers.

After attending 2 day trips last school holidays and assessing whether it was "suitable", Amelia pushed and pushed to go on a camp.

She is "growing up".

After much thought, I realised that she needed time away from us.
She needed time away like other children her age.
She needed to gloat and talk about her "adventure".

My concern is and has always been that "no one can care for her like we do".

Amelia cannot do anything for herself.
She has many fears and worries.
WILL these people look after these attributes of her personality?
Will they shower and toilet her appropriately?
Will they make sure she sleeps soundly?

Amelia is OUR child and we will look after her appropriately.
Will they ?

Amelia went and loved it.
There was one complaint about "sleep time".
It is something we will be following up.
It is something we will be ensuring before she goes on any more camps.
Amelia wants to attend more.

That has to be a positive result........surely.

She had a make-up beauty party, made cookies and went to an animal sanctuary.
Amelia spent time away from us and our house.
She connected with the "carers".

It has been a huge learning curve for all of us.
_____________________________________

Tom's school report came home recently.
He is "above average" in 80% of his subject areas.
In most areas he is 6-12 months in front with his learning.

THAT IS HUGE.

Tom is also having nightmares.
At approximately 1am he wakes up and thinks that "aliens" are coming to get him.
It is very upsetting, but also very disrupting to the household sleep routine.
We are all very tired.

Scott suggested going on the Internet and finding how to "power" one of his teddies to look after him.
"Yeah. Like that is going to work!" he responded.
I laughed at Scott thinking Tom would believe that but also laughed at the irony of that fact that "aliens" are coming to get him.
______________________________________

Finally the next interesting news in our household..

I have to endure a colonoscopy next week.
In lamens terms that is "a camera up your bum".

I have begun bleeding from an area where the only substances should be brown
(or blue if you have eaten cake with blue icing  -   take that from experience!).

After an investigation (no description necessary) it has been decided further investigation is needed.

Most people would not be concerned BUT we are talking about US.
The people who have EVERYTHING happen to them.
Some of you are following my beautiful friend and her battle after bleeding from the bowel.
Why would WE be any different?

We have great luck in this house......NOT.

Will wait until next week
BUT
There is that small (MASSIVE) worry............

__________________________________

Amelia is "freaked out" by my procedure next week.
I decided to try and alleviate the worry by getting her to imagine something.
You MAY find it funny.....

Imagine the people that are doing the procedure next week.

Imagine saying in Kindergarten.....
"WHEN I GROW UP" ........

"I am going to put a camera up peoples bums and look at their poo".

Enjoy your dinner everyone.

xxx

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