The Milestones That Keep On Grieving

 

Preface:  I know it's been a while since I wrote here, and I'll be honest, I wasn't really going to post here ever again...  it felt like this should have been the end of a story, but I realised that this is a story that will never end.  Chapters may finish, but this story will always go on...  This is just a standalone chapter.  

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Everything to do with a child's life is measured in milestones.  Right from the moment of conception...  trimesters are measured as milestones, birth is a milestone, and then they come hard and fast.  First smile, first word, first time they sit up, first time they stand, first time they walk, first time they run.  First birthday, first day of school, first tooth, first lost tooth.  First dance class or recital, first sports game.  They're all milestones that are celebrated, applauded, shared so everyone can see your excitement.  

The death of a child doesn't mean that the milestones end, just that they're different.  

First day.  First week.  First month.  First year.  First birthday, first Easter, first Christmas, Mothers/Fathers day...  

The day you reach the point that they've been gone for a year and you realise that a whole year has passed and all these other milestones have been achieved...  the world still goes on, even if part of you doesn't want it to.

These milestones are still there.  They're not celebrated or applauded, and they're not shared with any element of excitement, but they still happen.  

The world keeps on spinning, the sun still rises and sets, and these milestones are silently acknowledged, shared with those nearest and dearest, or just reflected upon in solitude.  

Then, all too soon the milestones in death slow down...  there's no more firsts, but then it becomes "The Plural".  

Year becomes Years.  

The world still keeps revolving, the sun still rises and sets, and milestones that should have been are silently reflected upon.  Missed first days of school.  Missed holidays.  Missed birthdays.  There comes a point where they've been gone from the world for more time than they were in it...  yet everywhere around you, the world moves on.  

Then all too soon, or so it seems, a whole new milestone creeps up and you realise that there's a new term that you need to contend with in the journey of grief...  "Decade"

And that, my friends, is where I stand today...  on the cusp of the decade.  

It's been a decade since she finished a year of intense chemo and radiation treatment.  

It's about to be a decade since she last celebrated a birthday with us.  

It's about to be a decade since the last time all four of my babies were happy and laughing in the same place at the same time...

It's about to be a decade since we got the news that, deep down we already knew...  despite the chemo and radiation, the cancer was still growing.  

It's about to be a decade since we heard those words.  "Nothing more can be done except wait."  

Which means...  

It's about to be a decade since I held her in my arms and screamed, knowing she was no longer with us. 

For some reason, this feels like a harder milestone to deal with.  I guess in a lot of ways it is.  This is, essentially, the last big milestone we face in her passing.  

There's no more firsts.

We won't be here for the century or the millennium  

There will still be lots of things in life that we will grieve not celebrating with her...  lots of life steps where her presence will be sorely missed...

And every day the world still keeps on revolving...  and every day the sun still rises and sets...  and every day my heart has a piece that is missing...  and not a single day will ever go by that she is not loved, cherished and so very deeply missed... 

Just like in life, there comes a point where there are no more firsts to celebrate...

And in death, this milestone is the last of the firsts.  

The first decade.  

Green Grapes.

I was judged yesterday.  

I know that this is nothing new, I have been judged repeatedly over many years,  but yesterday it made me really stop and think.

Yesterday I was judged over grapes.

Yes, that is correct, grapes.  The little green things, kind of oblong shaped, sweetish in taste, dried to make sultanas/currants/raisins...  Grapes.  Green Seedless Grapes.

I took the girls out to my parents for a couple of days to let them have some quality time during the holidays and Miss Bella and I ducked into the local supermarket to pick up a few bits and pieces...  you know, holiday essentials, crisps, lemonade, ice cream etc.  We were walking through the fruit and veg section to get to the important stuff and Bella spied the green grapes, sitting there, glistening so sweetly in the afternoon sun.  

Immediately her taste buds were fixated.  "Mamma, can I get some grapes with the $10 Grandad gave me?  I just LOVE grapes and I promise I will share them with Grandad."

Well, who was I to say no?  Here's my little 6 year old daughter begging and pleading, in the midsts of our junkfood extravaganza, for grapes.  So, naturally, my answer was "Of course you can sweetheart."

This was about when the pink haird kook harrumphed at my baby girl and literally snatched the grapes out of her hand.  "You can't eat those!  They're from the U.S. of A!"

I drew in a deep breath, picked up the bag of grapes, handed them back to Bella and as calmly as I could manage, turned around and said "No one locally has grapes available at the moment.  They are a fresh fruit, she likes them, so if she wants to eat them, I am not going to stop her."

Which is when I got told that the problem with the world is parents like me, because I don't instill a sense of importance in my children, I don't teach them about supporting the businesses that support us.  I will buy anything I want because I want it, without regard of who is harmed in the process.  

I gave her about a minute while we weighed out our grapes and then I walked away, but as I neared the deli at the other end of the store I could still hear her banging on.  

A very kind hearted and sympathetic store employee offered reassurance by telling me that she is always that opinionated and vocal, and not to let it upset me...  but the whole situation really made me stop and think as I was driving home.

Every day, in all of society around me, I see people being judged.  I open Facebook and I see post after post of people judging each other. 

People who see a snapshot of another persons life and for some inexplicable reason feel justified that that brief moment gives them the right to judge another person in their entirety...  to condemn their lifestyle, to insult their decisions, or perhaps even just to insult the person themselves...  all the while not knowing anything more than what can be seen with a quick cursory glance.

I have been the person on the receiving end of the judgement...  I have felt the stares, heard the condemnation and experienced the criticism.

I have been the parent who was frustrated at a crying baby because I was so incredibly, extremely exhausted and overwhelmed that all I wanted to do was cry, but instead I was out in society because I had other children who needed to be distracted, groceries that needed to be bought and bills that needed to be paid.

I have been the one who walked in to the store and spent Centerlink money on something completely not child related.  It doesn't mean that I am a bad parent or that I am neglecting my children...  it just meant that every other week when I spent every spare cent on making sure my children had what they needed, I felt that it would be ok for once to splash out on something that I couldn't otherwise justify or afford for myself.

I have been the 'fat chick' in the line up at the supermarket with a trolley full of frozen items that would probably under normal circumstances never actually meet the actual criteria for food, let alone food like substances...  I have been tutted at, and been on the receiving end of bad looks and harsh comments because my poor children were being neglected and headed for a life of obesity...  yet none of those doing the tutting or the commenting had any realisation at all of what was happening in my life or why I was doing what I was doing.

I have been the one with the messy house, the sink full of dishes and the laundry full of clothing who has friends that shy away because they can't handle being in a house where chaos rules supreme.

I have been the one who has comforted my children when they are overlooked for party invites and play dates because we don't meet some unwritten code of what is socially acceptable and what is not.

I have been judged on choices, on appearances, on decisions, on purchases, on words...  yet every time it has been a judgement based on just a brief snapshot of my life.

It has been this judgement that makes me want to be different...  I want to think the best of people, to not automatically assume the worst because, just like those who look in on my life, all they see is a snapshot and not a real picture.  

Once upon a time it took a village to raise a child, people helped each other out and offered support and compassion, yet now, it seems like it is every Mamma for herself and heaven help you if you dare to deviate from the perfect parenting that society has come to expect from us.

Parenting is not about perfection, it is about love.  Parenting runs much deeper than cloth nappies, breastfeeding, organic diets and income sources.  Parenting is about learning what is important, then taking those things and savouring them. Parenting is about teaching our children these lessons in life, molding and sculpting them into wonderful, loving, giving, gracious people.  

Perhaps this outlook is one that comes with having been dragged through hell and back, or perhaps there is some other mysterious force at play...  but I have figured out this much.

In years to come, my children aren't going to remember if I packed the dishwasher or if there was washing in the laundry...  but they will remember that we did cartwheels in the yard, we chased butterflies and we grew pretty flowers in the garden.

My children aren't going to remember if I cooked them a perfectly nutritious meal that was fat free, sugar free, wheat free, grain free, soy free, preservative free, additive free, and made only from 100% biodynamic organic produce...  but they will remember the happy love party where we had lemonade, ice cream and bubble bath's for breakfast.

They aren't going to be emotionally damaged because Mamma did something for herself once a year.

God willing, the flip side of this is that I can raise children who see the good in the world, not the negative...  that despite the rocky beginnings my children will grow into kind, gracious, loving creatures who treat others as they want to be treated, who learn to not judge a book by it's cover...  

After all, sometimes the least desirable cover can contain the most amazing stories.

Dwelling on the past.

It's nearly the end of September.  

I'm not quite sure how that happened.  It feels like the days are all blurring into one now.

It was Nicola's birthday 3 weeks ago.  We knew how hard it was going to be, emotionally, to face the day, so we did the thing that made the most sense...  we turned tail and rain.

7 glorious days in Palm Cove.  We stayed at Mantra Amphora, in a gorgeous little apartment that overlooked the pool and we hid from the rest of the world.

It didn't work. 

Dealing with her birthday was so incredibly painful, so we did the thing that we did best...  we partied.  We started with lemonade, ice cream and bubble bath's for breakfast, then we strolled along the beach, paddled in the water and enjoyed fish and chips for lunch.  We had cake, complete with sparkler candles and noise makers...  then we went out somewhere nice for dinner.  

The only thing that was missing was the one thing we couldn't have, and that was our Princess.

Then we had to come back to reality...  and reality sucks.

Last week I was looking through all the photos we took while we were at Disneyland, and it was so hard to comprehend that that was 12 months ago.  It has been a little over 12 months since we set foot on the hallowed grounds of the happiest place on earth...  and indeed, it will forever remain the happiest place on earth.  It is still, and will forever more be the last place that we were together as a family and truly happy.  We shared so many memories, so many moments and so much love...  we were truly and most incredibly blessed to have such a phenomenal experience, and for that we will be forever grateful.

Then we came home and it all turned to pooki.  

12 months ago yesterday Nicola had her last MRI.  We already knew the truth, the cancer was spreading again.  It had been since June/July.  During her last chemo session in August even her oncologist in his round about way intimated that it had increased in growth...  but he knew what we already knew...  to scan early would change nothing except our chance to travel.  

So we plastered a smile on our faces, hiding the hurt and anger in a deeper place and went along on our way.  

Before her last MRI we had already been making plans...  we knew the scans would show growth within the primary tumor, and we had a tentative plan in place...  scan on Monday, results on Tuesday, Wednesday and Thursday to get ourselves organised, Friday to start driving to Brisbane, and Monday admission to try second chance chemo.

To say our plans were derailed is something of an understatement.  

Speaking to our local pediatric oncology nurse I had expressed a few minor concerns that we had had while we were away, and next thing I know we were on the phone to the oncologist in Brisbane.  He asked me questions, a whole bunch of questions.  I remember making a lot of jokes about things...  I blame it on the jetlag!

I remember joking that Nicola's decreased urine output was because the nappies in the US were so bad that she had been saving up all her wee until we got home!

My Mum was sitting in the recovery room with Nicola, and with my sister who had just had day surgery that morning...  they had come to visit us before Mum took my sister home for sleep.

I remember after talking to her oncologist I walked back into the small room.  I don't know what the expression on my face was like, but it must have been frightful because my sister dropped her drink and my Mum started crying.  I sat down and I couldn't breath.  My chest hurt, I was gasping, I couldn't breath, I couldn't talk.

That was the day that a massive freak storm hit the South East corner and we couldn't transmit any of her scan images to Brisbane.  Her oncologist told me he would stay until late, and if he hadn't got them by 10pm he would be back early the next morning.

Taking her home that day was so bitter sweet...  my sister, despite her own issues, had volunteered to take the other three girls so that Michael and I could talk, assess, try in some way to comprehend.

Comprehension never came, but confirmation did.  7.28am on the morning of the 25th September we got our final answer.  Our daughter was officially palliative.  There was nothing more that could be done.  The tumor had grown so large so quickly that it was obstructing urine flow.  They had even called in the surgeons at 6am to try and determine if there was anything that could be done surgically that could buy us more time, but they were all unanimous.  We were past the point of no return.  We most likely had been for several months. 

She had held on just long enough to do Disneyland before she fell apart.  

12 months ago today we started our journey descending into the depths of hell.  

It feels so surreal.  Every moment is etched into my memory, I can remember every word, every conversation, every expression...  the only thing I couldn't count is the tears.

Now, 12 months on, here we are.  So rapidly approaching her first angelversary and every day my heart seems to shatter just a little bit more.  

Every morning I wake up, I plaster a smile onto my face and I do the very best I can do get through every day.  

But right now, I seem to spend most of my time dwelling on what happened 12 months ago.

12 months is a long time...  but it is no where near long enough, and I don't think any amount of time will ever be 'enough'.

6 Months Ago.

6 Months ago tonight...

6 months ago tonight I saw you smile.  You were, for a few hours, free from the pain that had plagued you for so long.  You were surrounded by the people who loved you, and you were the center of the universe.  

Quite happily you went from one cuddling embrace to another, lapping up the love from everyone around you.

6 months ago tonight we took all your dressings down, we de-needled your port and I took you into the shower.  We shampooed and conditioned the few stray whisps of hair that were left on your beautiful little head.  We played our soapy snuggles game.  We played 'wash the baby bum' and we had soapy tickles.

6 months ago tonight we dressed you in another brand new pair of jammies.  Ariel ones.  We snuggled you into your bed with your beloved dolly and we told you we love you.

6 months ago tonight you smiled and signed love to us.

6 months ago tomorrow our hearts were shattered into a million pieces.

It is so hard to comprehend that you have been gone for 6 months tomorrow.  I still wake up in the night because I hear you cry for me.  I still wake up and can hear you playing in your bed.  

Every day there are a million reminders around me of the fact that you just simply aren't here...  and I miss you.  

We all miss you.

I miss you so much it hurts...  and it hurts every minute of every day.  

6 months on and the pain hasn't gotten any easier...  

I don't think it ever will.

Just Imagine...

Imagine...  

Imagine for a minute...

Imagine what it's like to hold your small daughter in your arms, cradling her gently, whispering soothingly to her while her tiny body is wracked with pain and nothing you can give her helps.

Imagine what it's like to see her face, a face you have always seen lit up with laughter, now contorted in pain so deep that it resounds in her eyes, eyes that beg you to do something, anything to help her.  She hurts and she is afraid, and there is nothing you can do except hold her and whisper to her and let her know you are there.

Imagine watching her sleep, watching her little chest rise and fall with each laboured breath, knowing that at any moment it could all be gone.  Every night, you spend hours sitting, watching, fearing that every minute that passes could be her last.  

Imagine feeling so incredibly hurt and betrayed by the world because this is happening, because you are trapped inside a nightmare and you know that you are not going to wake up.  

Imagine that your world is crumbling around you and there is nothing you can do to stop it, because this is a fight that you cannot win...

Imagine that this is your life...  your world, your everything...

Imagine what it would be like to live like this, day after day, week after week...

Imagine now that YOU did this to your child.

Imagine that you gave her toxic drugs purchased illegally on the internet to combat a deadly disease that she didn't have.

Imagine you are the reason that she suffers.

Imagine knowingly and willingly inflicting on your child a life of pain, suffering and misery.

Why?

Imaginary glory.

Attention?  Money?  Power?

I don't know...  but what I can tell you is that this isn't imaginary...  this is real, very real.  

It happened.

A child who was once very bright and healthy is now battling a potentially fatal battle because her mother fed her chemotherapy drugs to make her sick.

I know that this happens from time to time...  you read stories about carers in other places who make their children sick...  but this is different.

Why?

I know this child.

I know this mother.

I trusted her.

When she said things like:

"It's a world no parent should ever have to see . . . a world where you are woken each night by the screams of children in pain . . . where you can hear children vomiting from the other side of the ward, retching so hard because they have nothing else to throw up."

"I HATE THIS PLACE. IF I COULD RUN AWAY FROM THIS PLACE I'D RUN A THOUSAND MILES TO BE AWAY FROM IT!"

I sympathised with her because those statements resonated with me.  I knew, first hand, the  horrors she was talking about.  I have been there, I have seen it, I have smelled it, I have felt it...  I have walked those halls and I have lived that life.

The difference being that she did it to her child on purpose...  we had no choice.  We didn't ask for it and would have given anything to have been sent on a different path.  We didn't want that life, apparently she did.

The impact that this is going to have is going to be phenomenal.  

The people that donated to this woman may not do so again out of fear of being scammed, so there will be lots of worthy, GENUINE people who will miss out on kindness and help from strangers, kindness and help that, I know from personal experience, can make a profound difference on a person's life when they need it most.

The parents who reached out to this woman, who shared stories, hugs and small parts of their lives may hold back in the future for fear of being burned again which may leave parents vulnerable and alone when they most need support and compassion.

The staff who were involved may become more skeptical of parents which may make it harder again for parents who need it to get help.

That is not even beginning to take into account all the other little bits and pieces...  the accommodation that was provided to her at the expense of the government, taking away a much needed room from a family who was genuinely in need.  The blood transfusions, the drugs provided, the tests that were done, the theater blocks...  all of which were taking resources away from a genuine patient with a genuine need...  and then there's the support and the charity.

All resources taken from children in genuine need because of one mother's desperate and pathetic need for attention.  


And I think that is the part that bothers me the most.  This woman willingly inflicted on her child pain and suffering that is unthinkable all for some perceived glory...  she made friends with families, she infiltrated their worlds...  and in doing so, she betrayed trust.  

Not only mine, but the trust of every other parent that has been in this situation.  

She has made a mockery of everything that our children have endured.  

And for what?

Attention?

Facebook likes?

Money?

I feel like a part of my world has been shattered.  I feel betrayed...  and I feel phsyically sick that anyone, least of all a MOTHER, could willingly and knowingly inflict this kind of suffering on an innocent child...  a child who now, may not recover.

That is something I don't need to imagine.  

:'(

Just STFU!

I make no apologies for the content of this post or my complete and utter dislike for conspiracy theorists.

If you don't like it, don't read it's that simple.  

Walk away now and no one will get hurt.

Every day...  every single day, on my Facebook  I see one person after another post these stupid conspiracy theories...

Like Aspartame is responsible for an epidemic of multiple sclerosis and lupus and kill you...

Like Red Bull is a secret weapon devised by the US government to kill you... 

Like drinking soda/soft drink from a can will cause leptospirosis and kill you...

Like instant noodles are covered in wax that will cause cancer and kill you...

Normally I just simply state that it is a hoax, if I can be bothered, and go about my day...

But now my hackles are up and I've got my cranky pants on...

Because I am SICK TO DEATH of the slew of conspiracy theories going around about cancer...  more specifically, how to cure cancer.

See...  way back in the middle of last year a particularly rude and obnoxious individual told me that I was the reason my daugher had cancer.  I have her refined sugars and flours.  I let her have processed foods.  I poisoned her.  I killed her.

It was around this time that I started to actually pay attention to the number of stupidly ridiculous conspiracy theories that people are spouting and spruking in regard to cancer.

For instance...

Cannabis can cure cancer.  Smoke it, ingest it, whatever...  but Cannabis can cure cancer!

Eating red meat left to 'cure' in the sun for 90 days will cure cancer.

Drinking barley grass in hot water twice a day will cure cancer.

Eating 13 serves of fresh sugar free vegetables every day will cure cancer.

Most of them I dismiss with a wave of the hand, they're stupid and if people believe them, well, it says a lot about their intelligence levels doesn't it?

But the one single conspiracy theory that is doing the rounds that really, really, REALLY makes my blood boil is the allegation that pharmaceutical companies have a cure for cancer.  They know what it is...  and cancer can be cured for as little as 20 cents...  

But the pharmaceutical companies have hushed this up because otherwise they won't make any money.

Seriously?

I mean, really...  seriously??

Do the people that spread this vitriol have any idea of how insulting this kind of thing is?

Firstly, it's insulting to every single person in the Oncology field.  The doctors, the nurses, the surgeons, the palliative care teams...  the people who deal with oncology patients day in and day out.  The ones who watch patients die after options have been exhausted and there is nothing more they can do.

Do you really think these people would stand back and let their patients die if there was a 20 cent cure that could be given that would cure them?

How about the families and friends?  The ones who watch their loved ones go from bright, happy, vivacious individuals to gaunt beings, barely recognizable, riddled with unmanageable pain and suffering.  

Do you really think that these people would stand back and let their loved ones, their parents, sisters or brothers...  their CHILDREN die if there was a 20 cent cure that could be given that would make everything better again?

What about the cancer sufferers themselves?

The ones who have to endure the ordeal...  the chemotherapy that makes them feel so violently nauseous and makes their hair fall out?  The mouth ulcers, the infections, the pain, the constant injections.  The radiation treatments, the surgeries, the ongoing barrage of medications to be taken around the clock.

The ones who end up with only one dream...  the dream to survive...  the ones who wake up every morning and celebrate just because they have woken up and have another day to be with those they love.

The ones who have the most to lose...  their lives...

Do you really think that these people would be dying if there was a 20 cent cure that could be given that would give them back their life again?

Seriously, do you really think at all?  Do you have any comprehension of how these theories might be taken by those who have been personally touched by this horrible disease?  Any idea how insulting they are?  How hurtful?

I dragged my family through hell and back...  I fought for my daughter, I moved heaven and earth to keep her here...  and I lost.

I lost her.

I lost a whole big chunk of my heart.

I wake every night because I can still hear her crying in pain. 

I close my eyes and I can see her face etched with suffering.

I stop and I can feel her in my arms, tense with confusion and fear.

There is not a day that goes by that I don't cry for her...  that I don't wish to God that I had more than just a photo of her to hold onto.

If a 20 cent cure could have changed that, don't you think I would have?

So...  seriously...  just for once...  think about what your saying...

Or better still...

STFU!

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

♥♥♥♥♥♥♥♥♥♥♥♥♥♥

Today should have been so very different.

Just know, we are thinking about you...

Loving you...

Missing you...

Celebrating you this side of Heaven!  

♥♥♥♥♥♥♥♥♥♥♥♥♥♥