Saturday, 29 November 2014



What I am about to write challenges those that believe I am strong.
It will create a a divided opinion on me as a person.

It is me though.

This year I have crept slowly into the chemical imbalance that is "depression".

My work situation could not have been any less ideal.
To accept a position that many others have left was always going to be a difficult role to take.

The battle to accept that I was no longer the main carer of both kids was harder than I imagined to accept.
Scott was amazing as a "house husband", do not get me wrong, but I was no longer the go to person.
I was no longer the person to check on them in school and be the first to hear about their day.
Instead I was the exhausted one who came home crying because I could not defend myself in the work politics arena.

When Scott and I reversed the role reversal, I did not easily slip back into my role of housewife and mother.
The old routine has not come back to me easily and Tom's diabetes throws a spanner into that anyway.

My Dad had a long stay in hospital and is still not better.......but at home, at least.
My Mum is not well either.

The past fortnight I have steeped lower than I have ever been.
I am just so sad.
My mood....everything.
I am just exceptionally sad.
I have tried many things to "get out of it" but nothing is working.

I think the final straw in this battle has been the suggestion Tom has "coeliacs disease".

I know many of you, with knowledge in this area, will say "It is easy once you learn".

I realise that.
But, for me, it is another diagnosis.
Another sadness for a child in our family.

Another diagnosis.

It seems every time we move through a difficult stage, this baseball bat comes and hits me in the head.

I thought when we were told to "go home and cherish Amelia. There is nothing we can do" would be the lowest of lows. And lets be honest a statement that is everyone's worst nightmare.

Then once we found positives, there were extreme highs.
Media attention (papers, magazines and T.V.) Disneyland, new car, car conversion, medical equipment.
Everything was going to be ok.
These people love Amelia as we do and will support us through this.

Then I lost some very close friends through disagreement.......extreme low.

Amelia's acknowledgement of where she "belongs", new friends, T.V. commercial, Tom developing into a very kind and clever person.......

BAM - Tom's diabetes diagnosis at 5pm last Christmas Eve.........extreme low.

Now possibly coeliacs disease.

Most people will not understand why I am struggling.
Most people would not understand my sadness.

When you live with Ataxia Telangiectasia and Juvenile Diabetes every single day, it is hard.
Sometimes too hard.

When he battles his needles and argues with you for 30 minutes every morning about where to put the needle.
When he has to watch the amount of fat and sugar he eats and count the carbs.......
When he cannot leave the house and get something "appropriate to eat", like parties, BBQ's or resturaunts.
When he goes to sleep and you do not know if his "levels" will get him through the night.
When a teacher will not let him "test" because he/she does not understand.
When he says "I hate my life" because he has diabetes.

When you have to shower, toilet, feed, dress.....double click the bloody ipad 2 times for is hard.
When you cannot even bloody understand your own child talk anymore.
When you have in your memory a beautiful, happy, magnetic little girl that was so innocent and had the world at her fingertips....
When her mobilty, speech and friends (because they cannot cope) are ripped away from her.
When her comprehension becomes so slow and yet she is still intellectual enough to mourn and grieve for that part that has slipped away.
She becomes angry, sad and fed up.
She asks "why me?".
She yells at me "do you know how hard it is to be me?".


But I know how hard it is to care for, love and look after you.
To make you my whole world.
To make myself responsible to give you the most amazing life I can possibly give you in the time you are with us.
To make myself feel guilty for every moment of every day that I cannot offer that to you.
To know that I am trying so hard to push myself to my absolute limit to give you what you deserve in the short time that you are here.

I only know that side.

Very deeply.

It goes beyond sad.
The depression goes deeper.
When you hear about possible treatments and studies that are still "developing".
Why are they still developing?
She is going to be dead (literally) before any of them eventuate.
Is it money?
Is it time?
Is it that they do not know where the hell to look?

All of this accumulates and catches up with you.

So if you think that I am strong....
please don't.

I am just like you.

All I ever wanted was to have a happy life with Scott and to have healthy children.

I do not think that is too much to ask.

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