Time is fleeting...

Because he is gone, by its very murderous nature, cancer has also gone.

No more cancer.
Lukas, in his 8 year old capacity to process the big issues, has come to the conclusion that terminal diseases are stupid. When I asked him how he came to that conclusion, he shrugged and said.."Well... It wanted to kill dad.. and it did. But it ended up killing itself too. Stupid cancer."
Stupid cancer.

Cancer took so very much of my attention. 

I only realise now, in these after days, that everything that we did in the past 3 years was done with the shadow of the "what if...".
We pushed it back with all of our might.
We fought and we raged against it-

We did a very good job of living and working and filling up the time we had with really worthwhile moments, but it's only now that I can reflect and see what we were carrying.
We were carrying the knowing- the deep seated knowledge that time is fleeting and what we had left was limited.

Time is fleeting.

Don't get me wrong.
This is not, in any form, a conceding that cancer won.
The message stays the same- cancer is no victor- it is a murderous thief.
And somewhere in the chaos of losing him, I came to an understanding that time is fleeting.
And not just for the terminal.
Not just for the palliative.

Time is fleeting.

Some days are going to feel like they just won't end.

They will drag their stubborn feet in a dissolute and discordant chorus of the monotonous. 

I know. 

For all of those toddler years... Those days just felt like they would never end. 

Sheldon was the champion of the toddler years- I only barely made it through with remnants of sanity intact. 

The teething and the constant nature of having toddlers felt like it was my lot in life.

And I willed it away...

I would dream of a time when they would get themselves dressed.

And buckle their own seat belts..

I would wish them to hurry in their growing.

If only I'd realised that time is fleeting.

Time will always move.

I don't need to encourage it on its way.

I'm struggling with the idea of wasted time at the moment.

Time that I had..

When the boys were little and we were a "normal"  family.

Time when I would pick on all of the things that were wrong in my life without giving pause to celebrate the fact that we were alive, we were together...

It's not regret.

Regret is a painful burden of wishful thinking.

A burden of missed opportunity.

No... It's not regret that I encounter, but rather just the knowledge that I spent too much precious time willing time to move. Wanting change and demanding perfection. 

Wasted time.

Days and nights when I wouldn't speak to him. 

I'd be carrying a hurt or an offence.. I'd bundle it up and I would be silent.

I want to scream at her, that younger me, "Don't do this!!! Let it go. You've made your point, he knows you're upset. Now stop. Make this right. Time is fleeting."

I'm not saying I wish we'd never fought... He infuriated me and I drove him up the wall sometimes. 

I'm saying I wish I'd been quicker to let it go...

It's the time I left his apologetic, sweet text message go unanswered for hours.. Just to prove my point.

That's hours of wasted time.

Time that I ransomed.. Selfishly and for no gain.

I'm struggling with the memory of the times we said, "there's just no time..."

"There's just no time to go away for the weekend.."

Because we were busy. And because we didn't know, truly know, that time is fleeting.

"There's just no time..."

Listen... 

Make the time.

Spend your time wisely.

Let it go-If it can be resolved quickly, resolve it. Move on. 

Don't be fooled into thinking that the monotony of this current situation is going to define all of your days. 

Time is fleeting.

And you need to grab it with both of your hands and use it wisely. 

Because when there is no more time left... Well, there's just no more time.

 And time... Another hour. Another day. Another month. Yes... Time. 

Time is all you want. 

His last 24 hours

Dear Friends,

Writing to you all has been an anchor through these past years. I have posted 60 long and sometimes rambling letters- and in your reading and sharing them, and in your messages of support- you have helped me feel surrounded and enveloped.. you have heard me in my rawest moments. 

It's been a journey, huh?!

The horrible and the wonderful.

You celebrated the joy of last September when he survived the surgery and the pain of this March when we came to the point of terminal. 

So many of you have a story- in fact, everyone of you has a story.

Each of us has a tale of the horrendous moments that are typical and expected in this life- we don't want them but they are part and parcel of living.

And each of us are owners and partakers of the beautiful stories- the triumphs, the love stories, the overcoming.

I guess I just wanted to take this moment to thank you for being with us and sending love and support as we traversed the pages and days of our story. 

Now... 

I wrote in fragments in the final hours of his life. That Friday into Saturday were truly the most profoundly difficult hours I have known. And so I wrote. Writing is something akin to breathing for me these days.

So...

If you want to read on- please know that these words came from a bedside on the 4th and 5th of September, while our beautiful Sheldon spent his last breaths and heartbeats with us.

They are raw words that echo and reflect the pain that comes in saying goodbye.

If you can't- that's ok.

Maybe one day you will.

Friday- 4th September. 

11:13am

I don't know when or if this will be posted. Right now it's a simple matter of me needing to write. Needing to put these things down so that I can forget for a while and so that I don't forget in days and weeks to come.

There is no preparation for this. 

For sitting on the end of a hospital bed and staring for an hour at the face of a beloved.
Memorizing. When I actually wonder if this is what I want to remember,  but knowing that I will. This face that is so drawn and etched with the burden of these days.
No.. there is no preparation for this.
If you ever have to tread these worn steps of this goodbye,  don't be fooled into thinking you can prepare.
I stayed with him last night. The pull out bed that fits next to the window provided me the perfect spot to keep watch.
He didn't move.
No restlessness.
No midnight walks or 3am cups of tea.
He didn't move and I felt a deep gutted remorse that I complained those days and weeks when he would wander the house after midnight or offer me tea at ungodly hours.
He slept and I had the quiet hospital room and the distant murmurs of a grieving family three rooms down to keep my company. That's the horrendously beautiful thing about this ward. I know that the lady making a cup of tea is saying that long goodbye to her sister who has valiantly and bravely fought cancer. And the couple sitting in the courtyard are taking a moment before they continue their bedside vigil as their loved one fades.
It's a quiet and calm place.

Sheldon didn't want to die at home.
He made that decision and it was clearly a part of his palliative care plan.
I tend to think that it would be rather nice to be at home,  but he was thinking of the boys. He knew they needed somewhere to be loud little boys and not feel like death was looming. 

Home is that safe place.

      *****************************

1:30pm

I've come for a walk.
I needed to have the sun on my face while I process this.
My husband is dying.
Actually dying.
Right now.

My brother took my phone this morning and made the phone calls I couldn't make. 

Telling our people to come home. 

To be here while he goes home.

You can't be prepared.
For the breathing... the death rattle.
And the changing pallor of skin.
For the wave of selfishness that equally wants him to fight to stay and to relax into that place of no more pain.

I have never hated anything so much as I vehemently hate and detest the murderous thief that is cancer.

I have to go.
Back to sing my loved one the songs of our life.
The song we danced to.
The lullaby we sang to our boys.

*******************************

It's 2:37pm and I have come to the foyer to wait for his brother.
But really I just need a moment. Another moment to breath and process. To think forward to that moment this afternoon when I will sit our sons down and tell them what is happening. They know. But they don't. Their daddy's death has been an abstract. An unknown. Until now. Now we know. Now we see.
I hate this.
****************************

It's 2:05am. Saturday, 5th September
He's strong. I knew that. But this. This is a strength that astounds me. He has been progressively getting worse.
I thought I could do this. Let him go. Let him go home. To run into the arms of his Jesus who waits. But it's not a matter of simply letting him go.
It's processing the fact that I won't hear him talk to me again.
Or laugh.
Or complain.
Or give his opinion of the plot and character development of a movie while we watch it. (It frustrated me so. )

I'm so tired but I needed to focus on something. To focus on getting these fragments of thought out from bouncing around this fragile brain.

Everything that I have googled about end stages of dying didn't tell me that it's torture.

Listening to him battle to take a breath. While I will him to succeed and will him to let go.

It's coming.
I just can't... but I can.
Around me are strewn (and that's the perfect word) the sleeping and crying and waiting members of this watch.
We have set a watch.
My people and me.
I can... I just don't want to.
At all.

*************************************

3:32pm. Saturday. 5th September

The room is empty.

Quiet for the first time in hours.

I'm alone-

He has gone.

It took all of his stubborn, beautiful strength to hold on for so long.

And now..

It's quiet.

How to tell you?

How to capture what has taken place here in Room 116?

In the hours and days and years that come after this moment, I want to remember this day- these last days and I want them to be veiled in kindness and the beautiful- I don't want them to be a memory that is best tiptoed around. This is important- to remember how he left us.

He left us the same way that he lived- with strength and on his terms.

Oh, my stubborn, infuriating darling heart.

It's just me and him in the room now.

He's not really here, you know- but these arms. This face.

My stubborn, beautiful, infuriating darling heart.

The room, his room that he hassled the nurses to move him into, was full of our people today- and last night. 

I know firsthand the meaning and the living out of the word 'vigil'.

To hold vigil.

It looks like his loved ones standing around his bed, stealing seats from a neighbours room, finding a spot on the floor to stretch  out- all while we watched every tortured breath drag in and out of his failing lungs.

Oh, my stubborn, infuriating darling heart.

The vigil lasted all night- 30 hours in total.

30 hours and our people didn't falter once.

Thank you.

It seems trivial to simply say thanks for being with me while he went- but it's all I have today.

I need to go.

I need to go home to our boys.

They have been... I can't even begin to describe the pure courage that I have seen them show today.

They loved him and kissed his hollowed face.

They sang to him and they soothed him as he went.

Oh, my stubborn and beautiful sons.

For you- he would have stayed forever.

I need to go.

But I need to write this moment.

The silence.

No rattling breath..

No faltering heart..

No more cancer..

He is still.

And in no more pain.

He is quiet.

And I miss him.

Already.

One hour and the missing is deep rooted in my gut.

I need to go.

One more story I'll tell him, about how he has loved us and how we have loved life.

One more hug.

One more time that I'll stare at the rise and fall of his features.

He's beautiful.

I'm going.

He's gone.

I have to go home.

Oh, my darling heart.

Hello Grief..

We are home.
The coffeed up alleyways of Melbourne and the bittersweet familiarity of Sydney offered us a kind reprieve from real life. But we are home.  We walked in the front door yesterday and real life was waiting- with a pile of letters addressed to the estate of the late Sheldon Gakowski.
Real life was waiting- with the phone calls I had to make to institutions that require a certified death certificate before they talk to me.
Real life.

I despise these real life days.
And yet I embrace them.
I have to.
Sheldon spoke about these days often... preparing me,  encouraging me... willing me to face them with the same determination and peace that has marked all the days before this new real life.

He knew me so well.
He knew,  and told me often,  that I'd be OK.
It would make me crazy cranky when he would start to talk about these real life days that I would live without him here.
I would get snappy at him...accuse him of being cruel and heartless whenever he would chat about how ok he knew I'd be without him. Didn't he know that I'd be useless?  A hopeless mess? He'd roll his eyes and dismiss the picture of abject despair that I would paint.
And he'd paint me a new picture.
One where I'd be OK.
One where I'd go back to work.
One where I'd remember which day is bin day.

I realise now that it was his great love for me that motivated those conversations. He wanted to remind me that I can do this.
Because he knew that on that day that I came home and real life assaulted me in it's realness,  I'd want to run again. I'd want to turn tail and be anywhere else.
And as I stood in the lounge room yesterday,  one hand holding my suitcase and the other clutching the pile of mail, I didn't think I had it in me to be at home.
And just as I was about to say "nope... let's not stay. Who fancies a road trip to Perth??", I remembered one of those conversations that I hated.
It was a few weeks before he went.
He was tired and fading.
We were sitting outside,  enjoying the morning sun.
He just said it straight-
"You'll miss me..."
I looked at him and looked away. I wasn't prepared to have another conversation about my grief.
Silence stretched out. And then this:
"Just don't forget to feed the cat while you miss me... And water the garden. "

That's this grief.
My grief in real life.
Missing him.
Looking for him still.
Feeling ripped off.
Knowing that something precious and treasured was stolen right out of my hands. But then this grief is doing the missing and the looking while I pay the bills.
And while I parent.
And while I prepare to go back to work.

This grief.
It colours these new real life days.
It tones and tinges them.

I thought it would be a weight,  heavy around my neck. The heavy weight of a crushing grief.
Here's the dramatic in me. The all-too-concious of what social expectation demands of the 35 year old widow.
I wondered at a "grieving period", complete with an all black wardrobe. (Yes,  I watched Gone with the Wind alot!)
This grieving time... a window of time that I would set aside to grieve. And my imaginings had me distraught and useless.
So consider my surprise when I discovered that there is no specific and clear mourning period. No start and no definitive finish point.
And, hello, I wear alot of black but blue and grey were the colors I found myself decked out in these past few football crazed weeks.
Consider my surprise when I didn't feel the weight of useless grief,  but instead felt like laughing at the antics of my boys as they discovered Melbourne.
This grief is not relegated to a certain number of days. It ebbs. It swirls.
Sometimes it pushes. So ferocious in it's determination to announce itself. And yet sometimes it's silent. And I feel....normal. I feel ok.
This grief.
It's beautiful.
And it's horrendous.
It's testament to the immense love that I shared with him.
It's a tribute to the joy and the frustration he was.
It's the evidence of his impact.

And at the end of the day,  it's what I have.
This grief.
He knew it would be my companion and he made sure I heard him when he told me not to let it consume me.
He told me about it.
He prepared me in his beautiful and generous way to walk into these new real life days. He knew it was coming. 

So I welcome and abhor this grief that he prepared me for. 

He knew that I would miss him. And he demanded that while I missed him, in the moments and hours and days of this grief, he demanded that I remember to feed the cat.

And water the garden.

And laugh.

And cry.

And love our boys.

And live.