Monday, January 16, 2012



noun \ˈstreŋ(k)th, ˈstren(t)th\

1: The quality or state of being strong


adj \ˈstrȯŋ\

2: Having moral or intellectual power
13: Not easily upset


"Look how strong you are?"

"You are stronger than you think!"

"You're strong enough to cope with anything."


There seems to be this general understanding between everyone else that I have this unending source of strength, that I am so strong and I can get through anything.

I really don't know where these ideas come from, I guess the only thing I can think is that these people don't really know me... they don't see the day to day stuff... so because I haven't collapsed into a screaming heap and gone to hide in a dark corner, rocking back and forth while swigging from the nearest bottle, that I have some tremendous source of strength, that I am indomitable.

I guess the other thing is that I have fought since Nicola was born. I have fought for her rights, I have fought for her care, I have fought for her services... but really, she is the one that has fought for her life.

Everyone keeps asking me how I'm coping, how I'm dealing with everything, and no matter what I reply with, there is the assumption that I am strong.

I am not strong.

I am a human. I am flawed, I am weak and I am deeply emotional.

I think the people who assume that I am strong don't see the 4 or more showers I take a day because with my head under the water no one can see my tears. I think the people who assume that I am strong aren't with me when I suddenly find myself faced with the fear that my future may not hold my child. I think the people who assume that I am strong see a facade, they don't see when my knees buckle and my heart breaks and the world just becomes too much and I don't want to do it any more.

Instead, they see when I pick myself up and force myself to smile and keep on going. They see me close my eyes and take a deep breath and take another step forward.

They see me laugh when I really want to cry, they see me keep going when I want to fall in a heap... and they think I am strong.

But I'm not...

And I guess that's alright.

Friday, January 6, 2012

Someone Else...

You know those things that happen in life that happen to other people? Those awful, heartbreaking, gut wrenching things that just leave you feeling utterly lost and confused and wondering why it could possibly happen???

Those things that you never have to worry about, because they only happen to other people...

Well, those things seem to be happening a lot in my life lately.

I can't really explain it, but for some reason I guess I just had thought that with everything we have been dealing with with Nicola that the rest of my family would not have to suffer... after all, how much hurt and heartache can one family endure???

So last night I left my 3 year old daughter having her chemotherapy in Brisbane (with her Daddy, not alone!) so I could hold my sister's hand as she brought her precious baby boy into the world...

A baby who has been so loved and cherish, so longed for... a baby boy who was desperately wanted...

A baby boy who we were told two days ago had passed away in utero from unknown causes.

I can't explain how I feel except to say I am numb. I really, truly, genuinely believed that I would be the first, and only, in my family to bury a child... that my sister would be spared the heartache of loss... and this is just so senseless, so very meaningless.

If it were Nicola that had passed, at least it would be somewhat expected. She is a sick child, she has been unwell and medically fragile her entire life. She has cancer, she is battling odds higher than the tallest mountain... but this little boy, he didn't even have a chance to make it into the world.

He never drew a breath or smiled a smile... he never cried or laughed... but he is oh so very, very loved... and oh so very, very perfect.

This afternoon I stood and watched as this precious little boy was blessed by the Priest, and even though his words were meant to be comforting and reassuring, I found myself standing there thinking that I was right two days ago.

God is nothing but a vindictive prick who gets his kicks out of the misery and suffering of the many.

I know that I am supposed to hold fast to my beliefs, I am supposed to believe there is a reason behind everything and one day that reason will become clear...

But what possible reason is there for this to happen?

What reason is there to continually make a little girl suffer more and more??

What reason is there to take a much loved and wanted first born child from a mother and father who desperately wanted him and did everything right?

How is it fair that there are women out there who smoke, drink and do drugs through their entire pregnancy and give birth to normal, healthy babies, yet mothers like my sister, or even myself, who don't drink, don't do drugs, don't smoke and don't do anything wrong end up being penalized?

I know that there is so much more to it than that, but there shouldn't be. It should be simple. Good people should not have to deal with bad things. Good people should be blessed with happiness, not pain and heartache and suffering.

I guess today I am just feeling raw and emotional and so very very hurt and angry at the world in general...

But the world doesn't care...

The world still keeps turning...

clocks keep ticking...

people keep moving about, doing their own thing... completely oblivious.

Oblivious to the anger...

Oblivious to the pain...

Oblivious to the heartache...

After all...

Things like this don't happen to normal people...

They happen to 'someone else'.

Tuesday, January 3, 2012

2012 - A New Year.

Well.. we are three days into the new year, and so far, I must say, I'm not really all that impressed.

New Years Day Nicola was so unsettled and miserable that none of us got any sleep. Her breathing is just absolutely awful at the moment, so much so that people coming to my house generally get quite shocked when they hear her. She sounds like she is constantly struggling to breath, her stridor is awful!

The leading theory is that she has vocal cord paralysis from one of the chemo drugs, which is affecting her breathing, her swallowing and her voice.

Her pain is finally under control, or at least, we think so. She still has some moments where she is really unsettled but they are fewer and further between now... but, then again she is on enough drugs to knock an elephant on it's backside, so I'm not really all that surprised.

It's hard to believe that we are now two months into our journey. We are very nearly at the first restage. On the 30th we fly to Brisbane for the MRI to be done to tell us what is happening with the tumor and if the chemo is working.

Looking back, I suspected the tumor before anyone else. I read too much into something her pediatrician said and I went home with the sinking feeling that they were going to find a tumor... and it turned out I was right... but that premonition or whatever it was gave me time to dwell on the news before it was even given to us, a chance to gather some strength before we were thrown into chaos, and I think that was partly what got me through, the fact that I wasn't totally taken by surprise...

But now, in the lead up to her first restage, I have this sickening feeling that they are going to tell me that the chemo isn't as effective as they had hoped. I so want to be wrong, I really do... but I just have this sinking sickening feeling that they are going to deliver another devastating blow and I'm not sure I'm up to it.

In the past three years I've gotten pretty good at hiding my emotions. I've become very adept at hiding what's really going on... put on a brave face, smile and pretend that everything is ok, but over the last two months it's gotten harder and harder.

I keep having what my husband calls 'moments'.

I will be doing something completely mundane and normal and all of a sudden these thoughts will creep into my mind, and I will find myself wondering about the future... and all the things that she may not get to do, and that thought just hurts so much.

Since she was born I've mourned the loss of such a huge portion of her life... but it was never like this. This is like a great big black cloud that just hovers over me, and at the most random of moments lightening will strike and the storm starts to rumble and it's so hard to not just fall to pieces.

There is so much happening it's hard to know what to think and how to feel, it's hard to find a way to balance everything and keep it all in check, but we will have to.

Not for ourselves, not even for our other children, but for Nicola. If she has the strength to keep going, we can't give up.

This is 2012... this is a new start, a new year...

This is Nicola's year.

Sunday, January 1, 2012

Dear 2011

Dear 2011,

I am so very glad to see the end of you. I am glad that you are finally over. You are a year that has just dragged and dragged and gone from bad to worse to utterly horrific.

At the start of this year we sat down with our therapists and wrote our goals for the year. They weren't extensive, but they were the goals that we had been working on, and this year was supposed to be our year.

We saw progress, we saw incremental gains and improvements, we saw her finally start enjoying her therapy and being able to disassociate from the medical extremes and focus on the enjoyment that came from the little bits that we saw...

But no, you couldn't just give us that could you? You had to toy with our minds a bit, play a few little games... and f*** with our emotions.

First the subdural hematoma, then the surgery for her tonsils and adnoids... the behavioural problems, the underlaying pain management that we've never been able to control, the feeding issues, the breathing issues, the neuro issues... then when we finally thought we were good to go, we were given the news that her heart was getting worse.

Given the extensive nature of her heart problems we had thought that that was going to be the worst thing that we were dealing with, everything else was getting better... but no...

Then you had to go and deliver one last blow didn't you... you couldn't just disappear silently and let us move on and deal with everything else, you had to go just that one step further...

Cancer... You had to deliver the most final blow you could... you gave my daughter cancer.

I have gone through so many emotions this year, I have been up and down, I have been twisted around, I have been turned inside out, and I am still standing... I don't know how, I don't know why, but I'm still standing... And now it's over.

You're gone, over, finished... you will NEVER return again...

So, 2011... I have two words for you.

F*** YOU!