One Month Ago Today...

Well... here we are...  facing the first of what is going to be many...  Today is the first month anniversary of your passing.

One month ago today you gained your angel wings.

I still don't understand.  I don't see why it had to be you.  Why my daughter?  Why my precious princess?

There are nearly 4oo children a year that are diagnosed with cancer in Australia.  Why couldn't it have been one of them?

I feel so angry...  I feel angry because we fought so hard. 

I fought when no one else had the faith in you.

I fought when no one else had the strength to do it.

I fought even though I was tired and I had had enough...

I fought through everything, we endured so much pain, so much heartache...  and for what?

We were beaten at the end by something we just simply couldn't fight.

I feel angry that I had to say goodbye... 

It seems like we have have a month of hurt.  Every time we start to get up from one blow, another one comes down again.  

Just 2 days after we lost you we had to start giving up your stuff.

Then we had your service...  and then 3 days later you came home to us... 

Only instead of holding your soft warm body in my arms and playing with you, all I could do was to cradle a cold ceramic urn. 

We created a special place for you, with all your favourite things...  but it's just a shelf, in your bedroom.  It's not the same as having you here with us.

We still have your airconditioner running.  I know that sooner or later we are going to have to turn it off, but I just can't bring myself to yet.  That is your room.  Your room is always cold.

Slowly, it seems that every day since has delivered another little blow.

Just lots of little things, things that I know are innocent occasions and should be so simple... but they hurt so so so much.

Isabella had her prep orientation...  and I walked into her new classroom and all I could think was that I would never get to do this with you.  You never got your first day at school.

Jessica and Isabella had their dance recital, and as much as I loved sitting there watching them dance, there were some beautiful tiny dancers there, and it just made me think that we would never get to do that with you.

There are constant reminders everywhere, every day, that you are no longer with us.

Even in little things, like jumping into the car and going shopping at lunch time.  We haven't done that in so long because you always had your daytime naps.  We could never keep you away from your naps, you needed them.  

Last week I picked up our Christmas Laybuys and I had to take your toys out and return them.  It hurt me so much.  We had planned a HUGE Christmas which is why I've been paying for it since June... but I put so much time into chosing the most perfect toys for you... and then I had to return them.  It just isn't fair.

Alyssa has developed a love of The Wiggles singing Twinkle Twinkle Little Star.  She plays it over and over again.  She sits in the car and starts singing...  and I can't help but wonder if maybe she's looking for you to sing with you.  You were the one that taught her that song, that was your song.

Even little things...  I will grab a dress out of the cupboard to put on Alyssa, and then at any random time during the day I will look at her, and suddenly I will remember you wearing that dress...  and it just hurts so very much.

All I have left of you are memories...  but it just doesn't feel like they can make me happy.

Each memory makes me cry...  makes my heart hurt and makes me want to be able to have you back, to hold you, cuddle you, sing to you...  to see you smile...  and to see that look in your eyes, that look that told me that you loved me.

Your toy box is sitting here unused.  

Tomorrow they are coming to take away your wheelchair and your bath seat...  and I know that it is only a very short time before we have to hand over your beloved Giraffe chair...

It feels like slowly every thing we have of yours is going away...  and I don't like it.

You have been so much a part of our lives...  you have been so integral in everything we have done over the past 4 years...  and now it's all gone.

I feel so lost...  I feel so sad...  I feel so alone...  and I just feel heartbroken.  I wake up each morning and I go through the motions.  I laugh when I think I'm supposed to and I talk when I think I'm expected to respond.  I cook, I clean, I do the school run.  I avoid talking to most everyone because it's just too much...  but I do what I need to to get through every day... 

But all around me, all I see is everyone is going about their lives, their worlds are still turning, they are still smiling and laughing...

One month ago today my world stopped.

And I really don't know when it will start turning again.

Uncertain.

This is probably the hardest blog entry I have ever written.

Normally, when I write, the words just flow.  Once they start, I can't stop them.  My thoughts, my feelings, my fears, everything just comes tumbling out to form some kind of a textual jumble on these pages.  

Now, I fear that my words have become hesitant...  simply because I doubt my own abilities...  perhaps even my own desires?

Three weeks, five days and 8 hours ago, give or take, my whole world was fracture...  not just fractured.. but shattered.

My daughter, my precious, beloved daughter passed away from cancer.  She was 4 years old.   

The day after her funeral, I found myself being accused of what can be surmised as 'pimping her out for publicity'.  

The primary charge was because her death was in the paper twice within a week.  

Apparently I was selling her out, cashing in on her suffering, and making parents of 'normal' children feel bad.

I have to say here, I really don't truly understand...  but regardless, I was so very, very deeply hurt by the accusations.

The fact that they came via a family member was perhaps even more hurtful...

But ever since, now I find myself in the unusual position where even though I want to write, I am so filled with thoughts and emotions and fears and just general moments that I feel compelled to share...  I now find myself second guessing everything.

I find that now, fear of writing is slowly crowding out my desire to record everything, to write it down and store it for later?

To be honest, right now, I really don't know.

I love to write, and it has been my writing that has gotten me through this so far, but is it fair that I continue if that writing is upsetting others?

I don't know...  I really don't know...

In the midsts of everything else, the one thing I have always held fast to, my writing, is no longer comfort.  Instead I am questioning whether or not I should.

Really, I guess, now, I just don't know which way to go any more.

I simply just don't know.

And Now You're Gone.

It's been a week.

How can a whole week pass without you here?

The world is still turning, people are still going about their lives and doing trivial and menial things...  yet my world has been turned upside down and inside out and ripped apart...  and I just don't understand.

A week ago I gave you your morning medications.  You looked up at me from bed, you smiled sleepily and you played your cheeky goosy girl game...  I kissed you, I told you I loved you and I tucked you in again and let you go back to sleep.

You were tired...  my poor baby girl, you were so very very tired... 

And you did go back to sleep...  and that was it...  then our world ended.

I don't know, I feel so lost.  Everything we have done for the past four years...  every decision, every thought, every action, you have always been the central point for focus.  Even when decisions have been made for someone else, you were our deciding factor.

And now you're gone.

And we are just lost.

Yesterday we held your memorial service.  It was beautiful, it was really beautiful.  There were over 100 people that came, and everyone that was there was there because they love you.

There were reporters there from the Bulletin to write about the tribute for a lost little Princess.

We played a dvd from The Wiggles, a personal DVD that they made just for you.  They love you too.

We showed photos of you, a photo tribute to your life and how much you had achieved...  and in every photo you were smiling, you were bright and you were happy...  and you were oh, so very, very cheeky!

And then, when the service was all over, we went out and we released balloons.  100 purple, pink and white helium filled balloons, 12 Dora balloons and one Wiggles balloon that came just from The Wiggles.

Baby girl, it was so beautiful.  Everyone cried, and everyone told me that they had never seen a service that was so full of love. 

There has been so much love for you, so much love from all around the world.

But that is exactly as it should be. 

My house has been filled with the most beautiful fresh flowers...  orchids, lillies, roses, carnations...  so many colours, so many beautiful smells...  so many flowers that are fragile and precious and exceptionally gorgeous, just like you.

You may have only been 4 years old, but you were incredible.  You have lived a life well beyond your little years and you have seen so many dreams come true.  

You have humbled people, shown them love and kindness, shown them the meaning of bravery and courage.  You have taught people what life SHOULD be about.  

You have been an inspiration...  you have been a light of hope...  you have been an expression of love.

And now you're gone.

You are going to be so very missed...

You ARE so very missed.

Memorial Service

Dearest Family & Friends,

A memorial service for Princess Nicola is going to be held on Friday, 02/11/12 at 2pm AEST at Woongarra Crematorium, Townsville.

We invite all Family and Friends to attend to help celebrate the memory of our special Princess.

Flowers are also welcome and can be sent to:

Woongarra Crematorium
Bruce Highway
Townsville, QLD, 4810

We will be doing a commemorative balloon release of pink, purple and white balloons after the service.  

We thank you for your love, your support and your prayers during this very difficult time.

Sleep Sweet Precious Angel

It is with much sadness that we advise that Princess Nicola passed away this morning.

She passed peacefully in her sleep, surrounded by friends and family who love her.

Fly free sweet Princess, may your angel wings guide you gently home.

♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  

Princess Nicola

05-09-08 - 27-10-12

FML

There are so many things that really bug the hell out of me about social media, especially Facebook.  

There is a quote that I have seen around a few times...  it says:

"Welcome to FACEBOOK.  The place where people add you as a friend, but walk past you in the street.  Where relationships are perfect and Liars believe they are telling the truth.  Your enemies visit your profile the most, yet friends and family block you...  and even though you write what you are really thinking, someone always takes it the wrong way or assumes your post is about them."

There is so much that annoys me...  I don't like the text speak, I get bugged by the annoying profiles that parents make for their very young children, or even worse, their dogs!  and I despise the way people comment on your every status, even though really you know that they couldn't care less, but they're trying to make themselves feel better about their own lives...

I get annoyed by the people who update every single little thing...  "Oh, I got a drink of water, how awesome am I?"

Or the people who update nothing except drama, drama, drama!

But mostly, more than anything else, I completely, totally and utterly LOATHE the term FML.

For the uninitiated among us, FML stands for F*** My Life.

"My shirt won't button up over my boobs....  FML!"

"My kid spilled foundation on my carpet...  FML!"

"I can't find a pair of brown boots in size 10...  FML!"

"I can't afford tickets to P!NK!  FML!"

I mean...  come on...  seriously?

If the worst thing that you can complain about is that you have big boobs, or you can't afford tickets to go to a stupid concert, then really, you need to step back, stop and think, and take a very, very long hard look at your life...

Then step out of your bubble, and look at the world around you.

Tonight, this is what is happening in the world around me.

In Kentucky, a family is mourning the loss of a beloved son who passed away from cancer at the age of 13.

In New England, a woman is watching her husband in Intensive Care after he was shot in the head because he happened to be in the wrong convenience store at the wrong time.

In Texas a mother is praying that something, ANYTHING, can be done to help her baby.

In London a mother is watching her beloved child suffer in excruciating pain while she is waitlisted for extreme surgery that most people could never even begin to fathom.

In the capital city a family has been told that there is nothing more that can be done for their precious daughter.

A few hours away, a woman is faced with losing her mother.

In a neighbouring town, a mother is sitting by her child's bedside as her child struggles to breathe...

And here?

Here, I sit...  I am listening as my husband holds my screaming daughter who is in pain that you couldn't even begin to comprehend.  Tonight, I am crying with my child, because as she cries, I know there is nothing more I can do except hold her and tell her it's ok.  

Tonight, my daughter is one day closer to gaining her angel wings.

My six year old daughter is blaming herself.  She wakes up five or six times a night screaming from horrific nightmares that plague her because she thinks that she is somehow responsible for the fact that her baby sister is dying.

My five year old daughter is struggling to comprehend what has become our reality.  She doesn't understand, she can't even begin to deal with it, so she just cries...  all the time.

My 20 month old daughter is just dealing with everyone else's stress and looking for the things that make her happy...  her Grandad and her Dora.

All around me, my family is slowly but surely falling apart, and there is not a damned thing that I can do to help any of them.  I can be there, I can hold them, I can reassure them that somehow, when this is through, we will be ok...  

But I can't change it.

My four year old daughter is dying from cancer, and there is nothing at all that I can do to change it.

So...  now...  having read what's happening in my world...  all I want to know is...

Still think your life is that bad because you can't get tickets to P!NK?

Last Night I Had The Strangest Dream...

Well, it wasn't last night, but it was a couple of nights ago...  and the dream wasn't really so strange...  more...  well... I guess it was sad.

I had a dream that we were going on a holiday.  I don't know why, but this holiday was important, it was so important I had spend years organising it...  I spoke to the hotel repeatedly, I made all the plans, I made sure we had a ground floor room that was easily accessible for Nicola's wheelchair, I made sure we had easy access to disability parking for ease and safety of getting her in and out of the car, I made sure the rooms were completely climate control so that she would be cool enough, and I made sure that we were away from any source of noise and we had good blockout curtains so it would be dark and quiet for her, just the way she likes it. 

I spent so long making the arrangements and I checked and double checked and triple checked and then checked some more to make sure everything was perfect.

Then we set off on our amazing holiday...

And when we got there, the hotel was under construction and it was all just a mess.  The parking lot was fenced off and all the car parks had been excavated.  The temporary car park was 5km up the road and it was blisteringly hot outside.  

The only building that had ground floor rooms had been partially levelled and mostly gutted so there was only a bit of a shell left...  definitely not anything that was even remotely suitable for human habitation...

I went to the manager and I was angry.  I made plans, I made sure every plan was perfect, I checked, I double checked, I triple checked and I checked some more to make sure that all her needs were going to be met...

And now we were here, in what looked like somewhere little better than a warzone.   Around us we could hear both deconstruction and reconstruction.  It was swelteringly hot, it was humid, it was loud, it was dusty, it was dirty...  and the only room they could give us had no airconditioning and was on the fourth floor with no elevators.

I argued, I yelled, I swore, I cried...  I argued some more, but there was simply no other options.

It was at that point I stopped and I looked at my daughter and she looked so weak and just so bone shatteringly exhausted, I knew I couldn't fight any more.  All I could do was to find somewhere that I could lay her down, hold her hand and watch her while she sleeps.

When I woke up, I felt so sad, but I also knew what it meant.

The time is coming that I need to stop fighting for my daughter.  There is no fight left that I can win.  

Looking at her now, my beautiful chubby cheeked daughter is gone.  Her chubby cheeks have disappeared, she is skinny and pale and shadowy.  She doesn't smile, she doesn't laugh, her sparkle is just not there any more.  

Most of her time is spent sitting on my lap cuddling, not watching tv, not talking, not playing...  just cuddling.  

She doesn't even want to watch Wiggles or Dora.

Her pain levels have escalated so rapidly that even the palliative care pain team have admitted that we are starting to run out of options on oral pain relief drugs and we may be looking at moving to an IV infusion soon in order to keep her comfortable.

Last week we found out that she has developed a staph infection in her port.  She developed raging fevers and a really high heart rate.  She has been started on IV antibiotics which I have learned to administer here at home, but they think this infection is what is pushing her poor little body over the edge.  

She is declining rapidly, even her doctor is surprised at the change in her.  

Her body is simply struggling and is starting to shut down.

My bright, happy, cheerful baby is slowly slipping away from me.

And I hate that I just can't fight this.