To look at him
To talk to him and to spend any amount of time with him..
Well, you'd be justified in wondering if this whole terminal thing was in fact real or if it's actually one giant mistake.
I feel like it is sometimes- a mistake.
I get lulled into a beautiful rhythm of our days and I find myself forgetting.
There is a kindness in forgetting.
In allowing your brain to pause from it's constant processing and wondering.
To let there by minutes and hours and entire days where cancer isn't apart of what we are and how we live.
The art of forgetting is to focus on the better parts of our days.
To sit surrounded by friends and laugh until our sides ache as we count the stupidity and hilarity of younger versions of ourselves.
To watch our boys walk along the beach until they are specks on a sandy horizon and to realise that we have raised the fearless type.
The reality of this situation is constantly at logger heads with the hope and the expectation that this could be the start of something truly miraculous, truly wondrous.
That our sons and our people are sideline to see the impossible made real in our midst.
To see the resurrection power that raised Christ from the confines of the grave spark a supernatural miracle in the lining of the abdomen and the lobes of the liver.
The reality and the realness of the situation is limited to what we have been told by the doctors. They have hummed and hahhed over the scans. They have met in meeting rooms and offices with computer screens filled up with the grey shadowed images of these scans.
They have made their estimations and their judgements and we have heard what they have said.
But we don't see the insides of him on a daily basis.
Those grey shadowed areas are hidden away and what we see is Sheldon.
Sheldon laughing.
Sheldon driving,
Sheldon at church, chatting easily about how he is feeling.
Sheldon packing the dishwasher and getting cranky at the boys when they leave little boy mess wherever they go.
Sheldon just looking and acting and seeming like...Sheldon.
And so, the forgetting steals in.
And then something infinitesimally small happens- he has been resting on the lunge chair watching his beloved Sci-Fi shows and as he stands up he winces and his hand rests on his abdomen.
And there- right there.
That action.
That moment.
The forgetting flees and I remember.
I remember that while we wait for the miracle, we live with the now.
During most minutes of most days, I choose to forget that cancer has invaded his body.
It's easy enough to do with this rare cancer.
But in one movement, one wince- the remembering is back.
Is this a better way?
To forget until the remembering comes back with such force that it almost floors me?
Is this a better way?
To forget and to push back until the ambulance is on it's way and I suddenly see fear, real live fear, written on my sons faces?
Is this a better way?
We were at Dreamworld a week ago.
We were having such a great day- the thrill rides and the amusements kept us all occupied. And as we meandered our way through the park I saw a gentlemen in a wheelchair.
My heart began to hammer an erratic tune as I watched him.
He was very unwell.
He had lost his hair, I assumed to ravage and cruel medical treatments.
He was a sickly shade of yellow and he was oh so frail.
I glanced towards my healthy looking husband and my gaze swung back to the wheelchair bound man. His family was around him.
His children had hung their backpacks on the handles of the wheelchair and he watched them as they ran ahead.
I studied their faces. The man and his people who stood by him.
The smiles that held that tinge of sadness.
The edge of hurt that was not far from their conversations.
The illness that had invaded their world was clearly on display for all to witness.
People cast sad little glances towards them as they bustled on with their day.
And I sighed a selfish little sigh of thankfulness. Yes- of thankfulness.
While watching that family suffer so visibly I had the audacity to be momentarily thankful.
Look what I have been reduced to- I find reprieve from my own burdens when compared to the suffering of others.
The wheelchair was pushed away, swallowed up by the crowd of happy holiday makers.
And I turned to take stock of my little crew.
I sat in the shade for a moment and confronted the conflict that was raging.
Is this a better way?
Here we were- on a holiday that was less a holiday and more the artful act of wanting to forget and make memories in equal measure.
Here we were- with this terminally ill cancer patient who looked like he was going to outlast the entire world.
Here we were- with this prognosis of this evil disease and no real physical proof that it's all that bad.
This is the nature of the beast that is GIST.
GIST is a strange cancer.
It doesn't present like most cancer. And it can't be treated like most cancers.
It's rogue and it's evil.
It mutates and changes genetic makeup so that it can outsmart any treatment method we might be throwing at it.
They say that it can't be killed. You can't burn it out or poison it out.
You can remove it surgically (hence the celebrations of last September when we got the big one out) and you can use imatinib type drugs that inhibit the tumors at a cellular level- the targeted drugs put the tumors into a stasis of sorts. A hibernation and if they work well, a shrinking will occur.
There are a few of these targeted drugs that are offered in Australia to provide a defensive against this cancer.
The practice is to use the targeted chemo until the tumor builds an immunity (mutates and changes) towards the drug.
Sheldon is not one of the warriors who had any great lasting success on the first two targeted lines of defence.
And when the drugs failed, they failed spectacularly.
So here we were- I was sitting in the shade at Dreamworld.
And I had just seen, side by side, the extremes of end stage disease.
The wheelchair man and my husband.
Both making memories and pushing back the looming threat of what could be coming.
Both probably battle wearied and yet determined to fight on.
And again, I felt thankful. In the face of the comparison I was glad that my husband was walking around, carrying the backpacks.
He looks normal.
He seems fine.
And because of that we are able to forget. Just for a while.
To say "Today, we can forget that cancer is around. We can be a normal family chilling at Dreamworld."
Let me be really honest though- sometimes, just sometimes I think that the forgetting and the pushing back is going to make it so much harder if this all does play out like the doctors have said.
Because we have this prognosis.
And yet we don't see it.
Not like the man in the wheelchair.
He looks like his prognosis.
He looks sick.
His people get to prepare for what might come every time they look at him.
Us? Oh, it's a horrible, terrible conflict that rages.
We know and yet we don't see.
We have heard and yet we get to pretend otherwise.
Is this a better way?
Please don't get me wrong.
I don't want the other option.
I don't want a sick looking husband.
I don't want wheelchairs and deathly shades of skin.
I really don't want any of it.
At all.
What I want is the impossible option.
The one that is made viable only when practicality ceases and supernatural intervenes.
Yes... I want a miracle.
And as we have always said- while we wait ringside for the miracle, we fight.
We fight this unseen cancer.
This hidden illness that sometimes shows itself in winces and frowns.
And sometimes, especially for our sons, the best form of fighting right now is the art of forgetting. The act of pushing it back to the end of the line- no, not today. We don't have to live like daddy has cancer today.
Daddy looks well, he acts well, so he is well.
Well enough to spend the day at the beach fishing.
Well enough to build sandcastles.
So- Is this a better way?
Is comparison possible?
A dear friend and her loves went through the valley of the shadows a little bit ago.
And in her griefs and pain she told a story that had a simple, profound lesson that resonates within me: Everyone has a story.
Everyone has a story.
Everyone has to walk a path.
Is mine easier than yours?
Tougher and steeper than yours?
Do I have to compare?
No.
Because whatever way we have to walk, all I know with all of my heart is:
There is grace for this.
For this way.
And there will grace I available if this way changes.
There will be grace for that way too.
Whatever way you are walking- you might feel that you have the hard end of the deal- but there is grace for this.
There is grace for this.
And this grace means that right now, on some days we can choose to forget.
And we will.
We will laugh and go fishing.
There is grace for this.
