I wish your life were my life

It’s been nearly six months, my friend, since your beautiful letter of support and understanding.

Six months since I fell back into the trenches (but did I ever really leave?).

Six months since you spoke about gathering an army, nurturing myself, and honouring the rings of support.

And those painfully long, and simultaneously short, six months have taught me a few new life lessons – some of which might resonate with other parents walking alongside me, on their own oncology journeys.

To those parents, I offer you my wholehearted love and support, whether this is your first time around the oncology block or your fifth.

So. For what it’s worth, here’s what I’ve learned:

That I wish your life was mine

Oh, this one hurts the most. Because while I sit in the shadows with my girl asleep in my arms, you watch yours playing and running and leaping.

Mine is worn out from that swim at the beach.

Yours is moving on to the next activity, the next incredible demonstration of health and strength and well-being.

Your child is somersaulting into the next moment.

I’m in awe of your life.

And I wish it were mine.

There’s no way to sugarcoat that awful truth. I wish the health of your child was the health of mine.

But I will never ever wish the reverse – you are not allowed to ever understand the pain of having a sick child.

I won’t allow it.

It can’t happen to you. It happened to me, and that’s enough.

To hold my story close to my chest

Stop offering information that wasn’t asked for.

Hold tight and protect your inner thoughts and feelings – don’t offer them up to those who won’t nurture or care for them. Which means, in essence, that people who should know what’s going on with our girl don’t.

And that’s ok.

The second time around is no easier

What I will say about this time around is that it’s different. It’s less shocking. It’s more familiar, in a perverse kind of way.

Like an old friend I share a messy history with. I could sleepwalk my way around the hospital quite comfortably, and there is literally nothing its corridors and quiet rooms could reveal to me that would be a shock.

But it’s just as difficult.

Just as heartbreaking, just as painful.

Despite my good intentions and some excellent advice, I pretend to the world as much as I ever have, with brief moments of sheer honesty that sit so terribly uncomfortably in the space between us that it reminds me not to do that again.

Why?

I guess because it’s hard to hear the hard stuff.

That most people want to believe it’s easier

Deep down most people hold a quiet hope that you just get used to the idea that your child has a brain tumour.

That somehow it just doesn’t bother you anymore.

That it no longer has you desperately scouring the web late at night, looking for advances in technology and treatments.

That it doesn’t have the power to bring you to your knees anymore.

That you couldn’t possibly still wake in the night gasping for breath, in the grips of a stealthy panic attack.

Because, seriously. It’s been years.

And they’d be right.

It has been years.

Years since I’ve slept peacefully.

Years since I’ve felt peaceful.

Years and years of carrying an enormous bucket of worry and grief around with me, all the while pretending my bucket is filled with sunshine and light.

Years of normalising the previously unthinkable.

Years of smiling through sudden tears.

Years of medical everything, of convincing my baby girl that she can handle one more test/needle/medicine/emergency admission/painful procedure because she is a ROCK STAR.

Convincing myself that I can handle one more hospital day/MRI/sleepless night/crushing disappointment.

That ‘fake it til you make it’ doesn’t apply to serious childhood illness

That shoving down the fear and grief and plastering on a smile (see above!) doesn’t lead to happiness.

It leads to burnout.

And that burnout is a terrible place to be; where your body lets you down and your threshold for stress is so low you keep bumping your head on it.

And when I talk about burnout I’m talking about it in a medical sense, not as a fleeting emotion or an especially tiring week.

Burnout is a prolonged response to chronic stress. Recently the World Health Organisation changed its definition of burnout, calling it “a syndrome conceptualised as resulting from chronic workplace stress that has not been successfully managed”.

And make no mistake, when you have a chronically or critically unwell child, caring for them is your job. Learning to manage it without eventually crashing is a whole other conversation.

That hope is a fickle thing

It carries you through the hardest of moments and allows a glimmer of an alternative to shine through. A ‘what if’ that makes all the ‘what next’ fears a little easier to carry.

But just as hope can lift you up, it can slam you down so fast you lose your breath. And yet, even in my angriest, ragiest moments, I know I carry an endless flicker of hope in my heart that one day my ‘what if’ will come true.

That true love exists in the hearts of strangers

One of the hardest things about our first toxic round of chemo was how quickly our story became obvious.

My greatest pain was on display for the world to see.

There for the taking.

It was there in the moment she whipped her beanie off as she danced in a coffee shop, unexpectedly showing her sweet, bald, little head (the rushed intake of breath in those around me somehow sucked the air right out of my lungs).

It was there in her tiny legs, and her bird-like arms wrapped around my neck as she slept.

It was there in the tube that snaked its way up her nose and into her stomach to deliver some nourishment.

There was no possibility of privacy.

No space to escape. But what I always saw, before I looked away, was love and compassion (and maybe a tiny bit of “there go I, but for the grace of God“).

This time the treatment is far kinder, and not as obvious to the world.

Which allows me a little more freedom to hide. And gosh I love that.

Because on a good day, it’s a blessing not to think about it for a bit.

And here’s what I’ve learned.

Strangers are filled with kindness when they understand there’s a story. And their reactions are genuine because they can’t imagine that such a thing could happen to a child. It’s shockingly new to them, and they react with such heart.

They remind me that there is goodness all around us, in the love of those we know and in those we don’t.