Happy Heavenly Birthday Baby Bubble

Heartache has become so much a part of my every day life.  I guess everything we have been through, everything we have endured, has skewed my perspective...  and everywhere I look I see sadness, hurt and heartache...

And today is no exception to that rule.

Today the world is a sad sad place.

It should be happy, we should be celebrating, we should be laughing and having fun.

We should be celebrating a first birthday party of my precious, beloved little nephew, but he was born sleeping at 35 weeks.

We are having something of a party, but instead laughter there is tears.

Instead of looking forward to many more to come, I find myself reflecting on the fact that life is so cruel.

Today I am adding a whole new level of sadness to the heartache I already feel every day. 

My heart hurts for my daughter, for missing her, for loving her...  my heart hurts for the pain I see my family suffering, my other children who still cry for her at night, who miss her so much every minute of every day...  for my husband who will stop and breathe and have a moment when he thinks of her or something reminds him of her...

And today my heart hurts for my sister and her partner and our families, everyone who was touched by his little heavenly being.  

We are having a little party this afternoon.  It is not a joyous occasion, but I feel the need to do something to mark his anniversary.  

We have a little cake with blue frosting and silver sparkles, and we have some balloons that we will send to Heaven...  and we will sing Happy Birthday.  

We also have a few little balloons that we will send to Nicola as well.   

My only hope is that today of all days, they have each other up there, they can find comfort in each others presence...

Because God knows, today there is little comfort down here without them.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥

Happy Heavenly First Birthday

Baby Bubble

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Today should have been so very different.

Just know, we are thinking about you...

Loving you...

Missing you...

Celebrating you this side of Heaven!  

♥♥♥♥♥♥♥♥♥♥♥♥♥♥

A Few More Hours...

Christmas has come and gone...  It just didn't seem real, it didn't seem right.  

Christmas eve was hard.  Normally I would have you sitting up with me while I wrapped the presents from Santa.   I would curse while trying to wrap awkwardly shaped gifts, and you would laugh your little laugh and try and wrap your self...

Yet this year, Christmas eve, there was a gaping silence that should have been filled by you, and it hurt.

It hurt so, so, so very much, and it just wasn't right.

Christmas Day...  well...  we went through the motions.  We got up, we opened presents, we laughed, we had breakfast, we had lunch, we watched the girls play with their toys, but all the while I was acutely aware that you were not here.

That was probably exacerbated by the fact that a family member bought The Wiggles Christmas CD up and spent most of the day demanding that we listen to it.  As lucky as he was that the fry pan was actually in use so I couldn't hit him upside the head with it (and I know how much that would have made you laugh!) it hurt to have constant reminders around about how much of a gap you have left in our lives.

Now it is New Years Eve...

In less than two hours it will be 2013...

And to be honest, that thought just utterly terrifies me.

It shouldn't, I know that...  God knows, this year has been hell on Earth.  There have been some highlights, like the amazing friends we have had come into our lives, and the incredible trip to Disneyland, seeing the snow and the excitement on your face as you tobogganed down the slopes with your Daddy and all the other things that we did together as a family...  

But this year we also said goodbye to Baby Krist before we got a chance to really meet him.  We watched as you endured one horrible chemo session after another, as your pain intensified and your body weakened, as the horrible cancer took it's toll on your body...  and we watched as you faded away before us.  We said goodbye to you...  

And that was single handedly the worst thing I have ever endured in my life.  

But, still, at least for most of 2012 I had you here.  Even with the chemo and the pain and the suffering and everything else, I had you here.  I could hold you, I could cuddle you, I could talk to you...  but now you're gone.

And that is why the thought of facing 2013 is so painful.

The thought of a whole year without you in my life is just horrific. 

The fact that it is the first of many just fills my heart with so much hurt.  

2013 is going to be bringing change...  and I don't want to face that.

But regardless of whether I want to face it or not, it is coming... in just a matter of hours.

And, just like everything else that has happened in the last 12 months, I can't stop it.  I can't change it.  Whether I want to or not, I have to accept it...

In a way, it feels like I am saying goodbye all over again...  


And I don't like that...

Not one little bit.

I thought of you today...

I thought of you today...

I know I think of you every day, but today it just seems that you've been especially on my mind.

Yesterday was hard.  We went to the Camp Quality Mad Hatters Tea Party...  and I knew it wouldn't be easy, but I didn't suspect it to slap me in the face quite as hard as it did.

They have a puppet that looks just like you.  The puppet sat next to me talking to the girls...  and all I could think of was you.

It was so hard not to cry and run away.

And today...

I don't know what it is...  I think today is just a day that you've been on all our minds.

Isabella has been asking lots of questions about you.  She keeps telling me that she knows that she has you inside her heart, but she wants you on the outside as well.

Every time she says it I feel another stab of pain in my heart, because I know that I want you on the outside too.

Everything now seems to remind me of you.

We set our Christmas tree up yesterday.  We had contemplated getting another one, and then I realised that the tree we have now is the only tree you have ever seen.

We bought it the first Christmas we had you in our lives.  It has been decorated every year with so much love.  Even now, I look at it and it makes my heart hurt for you.

We still have the same tinsel that you loved running your fingers through.  You laughed so much every time you touched it.  It was so tickly on your little hands and fingers.

We got rid of a lot of the decorations that we used to have...  but if I had known that we would no longer have you, I would have kept them.  There were so many memories...  but now, looking at my tree...

There is a crown that was given to us to hang on our tree as a reminder of the princess that you were.

A cupcake, to remind us of how much you loved your food, especially your cakes.

Birds, for your freedom and your love of music.

A beautiful bauble that we bought back from Disneyland...  to remind us of our happiest days on Earth...

It is a tree that has seen better days...  it is slowly falling apart, branch by branch...  and it has seen more than it's $25 share of life...  

But it is a tree that is so full of love.

Everything in our lives seems to be filled with so much love...  just not with you.

And we miss you.

So very much it hurts.

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.