Because you were his.



I wonder if you will remember?
How you brought frenetic joy and energy into every room you entered. How the room vibrates with anticipation when you enter it.  How you mirror light and shimmer it around like a crystal hanging in the window.

How you watched a cartoon based on your favourite song to sing with Bede, ‘We’re Going on a Bear Hunt’. The characters sung ‘my heart is still beating and I’m still thinking of you’ as they longed for one another unable to overcome separation. Finally feeling safe enough to stop being brave, you begin to cry a guttural, uncontrollable, grief riddled cry. I wonder if you will remember how real your grief is. That it is not a manufactured memory it is a grief borne from a profound and humble love.

I know you will remember to keep looking upward and joyfully yelling out to the sky and your brother “Thank you Bede”, “I love you Bede”, “would you like this Bede? You would.”

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I hope you will you remember that you gave him a new brand of normal.

Unquestioning, unrelenting, unerring. His fierce, uncompromising, sister.  Never allowing for his disability, but always protecting any vulnerability. There were never any excuses with you. You raised him up.

If he had the book. You wanted it. He was generous but you taught him to share.

If he wanted a quiet moment you wanted to invade it and be right there with him. He was kind and determined but you taught him tolerance.

If he was learning you wanted to conquer. He was determined but you made him keep pace.

He was our cherished baby but in your love he became the best kind of big brother.

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I hope you will remember the ‘small’ stuff. Like the walks to the park, the shared stories, the drives to kindy, the playing on the mat. The evenings spent at the beach watching the sunset, the spas floating together, the long drives with the two of you side by side – you asking to hold his hand, indignant at his refusal. Laughing, exploring, loving, living. In every way each other’s equal.

I know you will remember the stories. Like how at 2 you couldn’t sort your colours but you could administer a subcutaneous infusion or a dose of heavy sedation no problems. How a hospital bed wasn’t a border for you. It was a seat, to sit with your beloved.


Before you were born you would kick him while he was fighting for his life, he would snuggle into the kick. When he died you would still crawl into his cot and stroke his face as you said goodbye, leaning into him. From life to death uncompromising love, his sister in his space. Right by his side. Unmoving. A mirror to his light reflecting it right back to him.

You won’t remember walking into his room the morning after he died – “Bede diff-ent. Bede white.”
You won’t remember that when someone cried you would take their hand and walk them into see him so they could stroke his cool face and be reminded that although Bede was “diff-ent” he was still Bede and so he was OK.

Those details that conjure the trauma, the grief, are irrelevant in a way. Eclipsed by the love that drove them.
May you always remember the love that allowed you to care for his body when his soul was gone. The love that allowed you to accept your brother just as he was even in the most challenging of circumstances. The same love that drove your friendship.

You will hear the stories of what a fierce, funny little thing you were forcing him to keep up with his therapy to keep up with you. But will you remember your tenderness, your gentleness if he was unwell, your care?

Will you remember the intangibles?

That you were a core part of his everything.

That Bede was never as normal as when he was with you.

Will you remember that your love and companionship raised him up enabling him to do the impossible

How much you adored him and admired him?

Will you remember that along with G you were his world?

Will you remember the chats, the reaches for a cuddle, the quizzical looks. The fed up sighs, the delighted squeals, the Christmas mornings.

I know you won’t remember the first time you met. Him supposedly not understanding the magnitude of the moment, you a day old supposedly knowing not a lot. Both of you reaching out across the bed to hold one another’s hands.

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Have you ever seen a boy happier to have a sister to roll with?

I hope you will remember how true it all was. That in 2 years the two of you packed in enough bonding, enough love, enough hope, enough tears, enough joy, enough light to last you both a lifetime.

This is not a memory we have created or reinforced for you.

The two of you were brother and sister.

With Gus by your side the three of you were everything. Gus enabled him, he shone and you my joyous little fairy taught him how to dance in the light.

In the end it doesn’t matter if you remember.
In your formative years you were exposed to magic. That won’t leave. That is imprinted on each fibre of your being. Your unique brand of defiant, nurturing, funny,  joyful magic intermingles with his  persistent, fortifying, hopeful, funny, light filled magic and it meets Gussy’s pragmatic, funny, clever, nurturing, magic.

And death can’t separate that.

And time can’t diminish that.

And forgotten moments don’t erode that.

I have no doubt you will forever be your own spectacular person.  You will also forever be his sister.

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This feeling that wakes you in the middle of the night crying for him. This feeling that he is being torn from us cell by cell.  This feeling is the hard edge of love.

May all the softness of all the easy love he has shrouded you in comfort you and carry you and hold you. May his light shine the truth upon you. You were loved and you loved and you belonged to each other and you belonged together.

I’m sorry that you’re not.

I’ll meet you where we are whole and easy and glow.

“For whatever we lose like a you or a me, it is always ourselves we find by the sea.”



A Bede update will come – a response to your love.
Tonight is Cressida’s. Just as Gus has his own reminder for all the he is and has been.
Issy x

Love won.

And so he died as he lived with strength, dignity, grace, shining his light and in the arms of those that loved him the most.
He was signing for ‘more’ and smiling almost until the very end.
Good naturedly defiant, triumphant. He did it his way.
He stayed true… A peaceful protest wrapped in warmth.

Bede was called into hospital last week when, as he smiled and laughed and attended rehab, we got the news his blood sodium was so high it would send a grown man into a coma. He continued to live on his terms. A few days into the admission, despite brain scans showing no acute change, we got the sense it was time to take our boy home. The doctors supported us but were also backing him to turn it around as he had done spectacularly so many times before.

We made it back to his happy place just in time on Tuesday. He died in the early hours of the next morning.

As one of Bede’s long term doctors put it “It almost sounds like the way its meant to be: On his terms, in his time, at his place, with his people.”

12 days ago Bede was making pizza, smiling, attending kindy, hanging with his brother and sister, living the best quality of life we could have ever hoped for. Roy says it feels a bit like he was on a train and simply thought “Yep. This is my stop, time to hop off.” Simple as that. Whatever it was Bede once again outwitted brain cancer to do it his way.

A gentle soul with a cheeky sense of humour. Determined to have the peace he so richly deserved. There was none of the pain or agitation we feared for him. Love won.

There was no raging against the dying of the light.
Just a miraculous boy who shines on into the night.

Bede you remain the wonder that is keeping the stars apart.
I carry your heart with me, We carry you in our hearts.

This news being delivered by blog and social media reflects the incredible number of incredible people that love Bede. It is an overwhelming task to inform you all in a way that does justice to the friendships Bede has cultivated. Please forgive us as we focus on caring for our three children. Details of his service on Wednesday will come in time.

Part 2 – No one told Bumble


It’s tempting to say your effect has resonated far beyond what I could have ever imagined but that is simply untrue.

We have always had high expectations of you son, from the moment we met you.
You have risen to meet them.
So it comes as no surprise that when a world class neuro oncologist walks into the room his first words are not medical.
His first words are how incredibly proud he is of you. We are too kiddo.

“Well it’s definitely bigger” is one of his classic good natured opening line understatements.
He says he has never seen a tumour this size in an alive or functioning child before. It’s impossible.

He says he is now even more blown away by the video of Bede on the treadmill learning to walk.
He says for you to be so well let alone learning and developing new skills is impossible.
He tells us that he’s proud of us too and that the incredible level of love and care you are receiving are the only possible things that could be helping keep you so well, he says some other things I didn’t know I needed to hear.

You are doing the impossible.

Some describe the war, the fight. We have always characterised you as mounting a peaceful protest. I would never understate the brutality of brain cancer and all it has delivered upon you but there was no grand invasion. This is who you are and always have been – the most incredible, generous, accommodating human being. It does not surprise me you are the same with your cancer.

I look over at your Daddy holding you as you are rousing from the haze of anaesthetic, resisting wakefulness. He is crying. Later he told me he thinks he’s better than me at not getting carried away with the thought that we could have you in our arms forever. But he had. Who wouldn’t be tempted by that the sweetest of thoughts? We love you so much and you have been doing so well.

Your doctor says he won’t give us time frames anymore.
Instead he says “It’s impossible for Bede to be here right now, who’s to say he won’t keep defying the odds.” He’s finally got you pegged.

I should be crying too but as we review the brutal images I can’t help but smile. I’m buoyed by  a deep pride in you very predictably achieving the impossible and I know where you are concerned there is ALWAYS faith to be had. The radiologist is confused and starts explaining to me that ‘eventually Bede will reach his tipping point.’ ‘There’s not much more the brain can take.’ This is very obviously the first time he has met you. There is joy with you even in the hardest moments. He doesn’t appreciate that.

The tumour is so big now small parts die leaving necrotic matter in your brain as it outstrips it’s own blood supply.

As the next few days tick away you get sleepier. Reminding the deepest parts of my heart that you will die soon. I want to ask you to stay but that wouldn’t be fair. You can’t. I can’t think of that right now. You have a neck that needs nuzzling, a pizza to make and a smile to be lured from the corner of your lips. There’s a green sheep that needs to be found. So I push it all to the furthest corners of my brain.

Now we sit on the beach together and I sing you the lyrics to mine and your Dad’s wedding dance song.
I’m not sure what is coming but I promise when it gets confusing that

🎵I’ll be your mirror

🎵Reflect what you are, in case you don’t know

🎵I’ll be the wind, the rain and the sunset

🎵The light on your door to show that you’re home

You have achieved the impossible – I expected nothing less from you my beautiful boy.
Go on now in whatever direction you choose. I will be here loving you and wishing you close.

We love you Bop.

We always have and we always will.


No one told Bumble.

Please make sure you’ve also had a read of Part 1 – Bede is living! Bede deserves for all his joy to be seen.

Part 1 – Bede is living!

We have done it, we have won, life is good. The sun is shining, his sly, cheeky grin fills our hearts and his steadfast love permeates every corner of our family. Our beautiful Bede has once again risen to the challenge and defined his own course.


No longer a fragile or struggling little boy that we need to stay hushed for –  Bede has thrived and is embracing life.  Bede loves being surrounded by different people, different sounds, smells, textures.  He is making new friends and trying new things. He is gaining brand new skills, the skills they called impossible. Thanks to his persistence and our dedicated team’s hard work he is now able to sit up completely unassisted! (yes! you read that right! He is so casual about it.)  He went to a performance of The Very Hungry Caterpillar recently and sat up the front with all the other kids and got his face painted for the first time.

hungry caterpillar blog

Bede’s babbling voice with gentle, happy, inquisitive tone and intonation fill the air as he practises words and clumsily manages a few. His contentedness soothes any doubt I ever had.


Bede loves going to the dog park in the afternoon and seeing all his old and new canine friends as they bound over to his wheel chair and nuzzle him or the eager ones that slobber him in kisses to their owner’s dismay. He loves attending kindy and being cared for by the staff who engage with him with such skill and genuine care it has blown us away. He loves swimming lessons and his music therapy and protests his devoted and beloved physio louder than ever!

He is attending rehab and has been practising his sign language and has started learning to walk on the treadmill as we all sing “hoorah!”


A workout this hard is serious business.

He loves pressing his switches with recorded messages or calling out to us with his laughter to remind us all he is at the centre of our world.


Bede sits on the water’s edge at sunset, a total beach baby like the rest of his family, and lets the waves wash over him. The cool sensory tug of the waves comes and goes threatening to topple him over but Bede remains strong, determined and lapps up every bit of happiness that is washed his way. Bede’s always been good at going with the flow. That hasn’t changed.

wheel chair in front of sun blog

It’s been a year since I dared write the words that so many of my friends who have lived alongside brain cancer have thought but dared not say. A year that left me wrapping Bede and his siblings in a loving cloak of protection. Unable to share as I focussed on him and making it all better. A year that has left me timid and with no time to write but Bede was born to shine and I am privileged enough to be his voice. It’s been a year of hard, constant, vigilant work. Both exhausting and energising it’s been an absolute labour of love that we could not have done without our incredible support crew of carers, therapists, educators, family and friends. The good bits outweigh the bad. In that time as I dealt with whatever was in front of me I have also felt so overwhelmed by all the support we received from our local and the wider Australian communities. We have been able to give Bede support we never imagined. What thanks could ever be big enough? You joined us in changing Bede’s experience of his life. My mum said the thanks would come from Bede. Perhaps the best thanks is a life well lived and he is here enjoying trying salted caramel for the first time and pulling his little sister in for a hug.

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Salted caramel and sunset celebrations.

Life slowly returns to the hum of normal Roy returns to work, I return to study, Gus takes surf lessons and Cress is in daycare. Each day I am thankful for the ordinary and extraordinary and I love Bede even more.


One of the boys.

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When you try and tolerate your sister for your mum’s sake but she won’t stop therapy-ing you!

Bede, it’s been a year since I felt life was too hard for you. I was wrong.  I should have known.
You are remarkable. Thank you for holding the faith when my own faltered.
Thank you for reminding me as you so often do that magic exists.
You are bigger than the ugliness of brain cancer and and as small as a tender kiss and whispered sigh.
The most complex life defined by the simplest love and purest happiness.
You are sitting on the beach with me. Right now. Perfect just as you are.
Our triumphant king of the point.
For this moment and everyone that has gone before and lies ahead.
Thank you.


Then the doctor walked in… that friendly face we know too well. “I’ve looked at the scan”.

It’s been a while.


Family, friends, doctors, nurses, reporters and complete strangers have kept asking me to return to writing.  Mothers of kids with terminal illnesses have asked me to go back to writing because my words have  validated something in them. But one of Bede’s doctors brushed all that aside and said to me “Why did you write? You wrote to give him a voice. Start writing again.”

To be honest I have been buckling under that privilege and like for many people 2016 has at times been a hard one. Not least was within days of Bede’s story airing on The Project we were told we would lose Bede any day. That Bede was in what is known as the honey moon period, even his wellness was bittersweet. That there was no medical explanation of why he was doing so well given his tumour had now grown so large. We were to prepare ourselves.

So we did. I withdrew from uni a week before my final exams. Roy once again put work on hold. We stopped pushing him as hard in therapy. We spoke to Gus. We worked with palliative care. We braced. True to form Bede lived, he shone, he grew.

But we were now in a new place having received so much attention and support and everyone having a different idea or expectation of how we should be feeling or responding to that attention, how we should be living, what we should be doing and all the while the doctors were certain that we would lose Bede imminently, it was time to plan his funeral.

So for the first time my anxiety took over. In the absence of adrenalin, dealing with the blunt force trauma of the news we were losing Bede, that his tumour was now the biggest it had ever been, combined with the chronicity of cares and doing my best to be a fun Mum for our other two kids I have been paralysed. With every ounce of strength I have had I have worked to maximise Bede’s quality of life, hold down the fort at home and hold on to our marriage. I haven’t been returning your calls, responding to your messages, answering your emails because it’s taken everything we have had to just survive. It’s been a brutal 6 months.

But shutting down doesn’t allow for much light to creep in.

I’ve had this concept percolating in my mind of the success story.
Mother’s post images and stories of their children’s lives once they have defeated cancer and they are out fishing, dancing, attending balls, going to school, achieving awards, getting drivers licences. Meanwhile renewed debates rage over quality of life versus quantity and what side effects of cancer render a life not worth living.

Somehow I don’t feel the permission to participate in any of it. Because my child will die or because I am perceived as bias. Either way we won’t have that success story.

But the truth is we are all going to die. Our success is not in some predetermined outcome or measured in months or achievements it is in the way we live our lives. Bede lives brilliantly and boldly and he is seeing in 2017 surrounded by friends and family and with a smile on his face. I keep getting caught out by these moments of OK-ness where I think I wish someone had told me this would be possible back then.

So I want to talk to the mothers who have shared my heart break – who’s children have no cure, there is just time. To the families who the ‘success stories’ don’t resonate with.

Here I am audaciously holding my terminally ill child up as hope.

Because the one promise they made us is that it was impossible that Bede would ever live until two. Now he is starting to drive his motorised car, we have a brand new wheel chair on the way, he is communicating and making choices with his switches, he has completed his kindy orientation. He has made new friends and his old friends love him even more. He is acquiring new skills and sharing the same old soothing light and when I lay on the mat with him the other day he laughed until he cried.

2016 has been hard for many of us but you can have moments of despair, moments where you lose trust in the system, or faith in yourself, where the challenges seem insurmountable, where you lose your positivity or even moments where you wish for the mercy of death and you can move beyond them.

Bede will turn 4 in a matter of days. He will start kindy in a matter of weeks. His brand new wheel chair will arrive in a matter of months. He is once again slowly being surrounded by people who are backing him for the slightly longer haul. This year I will once again try to go back to uni, roy will try and return to his career, our other kids will each reach their own milestones.

3 years after we ceased chemo for Bede’s cancer, a cancer that was meant to retaliate by taking him almost immediately we are at home, watching the sunset and bathed in the glow of gratitude.

We want to wish everyone a happy, healthy, joyful new year. There is so much more to say but for tonight this will have to do.

Bede is well.



This blog is dedicated to our family’s greatest success story. My teacher, my friend, my uncle. A man who demonstrated to us all that a boy swathed in his parents love and his own strength and zest for life could defy the odds and never be defined by disability. A joker, a family man, a special olympian. The very best of us.
Rest in Peace now Dominic,  you and your memory are so very cherished.

My heart is raw.

There has been so many beautiful and busy things happening in our lives lately. All the while there is Bede. Steady, unwavering. Our touchstone of love and hope and light that keeps us all grounded. That slows us all down. That makes sure we never get caught up in the business in life.

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It’s funny how elastic time is. Cress has just turned 1 and it feels like she was only born yesterday. That same year in Bede’s life feels like an age. He has accomplished much but he has also endured much.

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Last post I wrote about how Bede’s distress prompted me to ask the doctors to bring his MRI forward.

So there I sit. In that same room. With that same doctor. I am in the same clothes. Roy wears that same weathered look. But getting your heart broken is never the same.

The doctor asks if we need a support person. We laugh. We have made our home here in this moment. He laughs. I know what that question means though.

It’s growing again. We’ve never had growth in this many scans in a row. Not even in the beginning.

Cut to the chase doc. “How long?”
“Well lets look at the scan first”
“I just need to know”
“6 months. Unless the cancer spontaneously stops growing I think you have around another 6 months with Bede.”

But if having your heart broken is never the same what’s the difference this time?
This time the aftermath is brutal.

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My heart is raw. Because the truth is I want my son to die. I’m tired. He is tired. I want peace for him, rest. But I instantly hate myself because I know then that is all there will be. He will have no more growth, no more moments tenderly reaching out to his brother, laying next to his sister. He wont squawk away at his dad anymore, he won’t let me kiss him in the way only I can.
He will just be gone. That is not enough for my special light filled boy. Life is hard but death seems worse.

Roy likens it to having something you love more than anything else in the world, that you want more than anything else, that you treasure above all else but knowing you can’t have it. Knowing it’s better for everyone if you don’t. Knowing you need to let it go. It’s heart breaking.

All I want for Bede is happiness. I grieve that we don’t all get that.
I am angry that we feel so alone.

Roy is confident about life after Bede, that he will be able to go forward living a life in testament to him. That his legacy will be brilliance.But I am scared. Scared that without my steady ship, my touchstone, my beautiful gentle soulful boy I will crumble because my world will never be the same.
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I am scared that the woman that will mother cress will be a stranger to who I am now. So I try to smile as much as I can and love as hard as I can in the hope that I can build her up enough that she will weather having me as her mum.

We go on trying to be present, trying to soak in every single moment, utterly mindful of how precious each one is while we spend sunny staurday afternoons choosing toddler sized coffins that would never, could never hold all that our son is. My heart bleeds and I grieve. I am tired. My bones and muscles and every tendon and ligament ache.

But as the bitterness of life rages the storms are rolling in across that familiar ocean. I know this too shall pass.

As I type tears stream down my face and I pound at the keyboard because life is hard and even writing isn’t easy anymore because there is so many conflicting things to say. Because of course amongst all this grief there is light. Bede’s interminable light.


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We got a puppy!

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Bede has grown more in the last few months than he has in the past few years and I am reminded that often despite the agitation, Bede is the fullest version of himself when his tumour is growing. Gus says now there is just more of Bede to love.

He is immersed in his therapy at least three days week. He is building his upper body strength and undeterred by previous failings he is attempting to crawl. This kid is the personification of determination He is relishing laying on the grass in the sunshine with his brother and sister. He is laughing fuller and deeper than ever before unable to catch his breath as the giggles pour out of him.

Our little Bede who can sign and screech but can not speak mimicked the words ‘I love you’ back to me the other day and it was everything to me.
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Through all this sadness and fear and joy and light and grief and hope and uncertainty and love we have found so much comfort in our friends and community.  A fundraiser is being held for Bede on June 17 in North Beach. With an aim to making his life as meaningful and as happy as possible and his death as easy and as comfortable as possible.


I will post more details later but for now you can check out some of the details for the event on the Facebook Event page (CLICK HERE) or on the booking website where you can also buy tickets if you’d like to come down and spend an eveing with us and say Hi. We’d love to see you!

Our dear friends have also been kind enough to set up a gofundme to help us support Bede during this time and said some beautiful things about us:

I feel like we are in a fog and its confusing but one unmovable truth remains…
He is small but he is mighty. Bede shines.

The Biology of Bede.

I’ve gone back to uni. In the hope of completing my degree and Bede hanging around long enough for me to be able to afford all the services I wish for him.

bede studying

Bede’s been helping me study.

One of the units I’m studying has a strong emphasis on human biology.
Everything featured in the first lecture on that aspect of the unit related to Bede.
The tentacle like villi that line the gut, the sympathetic and para sympathetic nervous systems, the thyroid, the structure of bones, the grey matter of the brain, the list went on.
Then we moved to the lab and I started looking at some of these things under a microscope.

the brain 1

Cellular structures, as pretty as art.
the brain 2
It really hit me that Bede’s body is failing him on the most basic, fundamental levels. That if we are the sum of our parts Bede is crumbling from within.
No wonder he has been crying so much, no wonder at times the fight has felt so insurmountable.

So what is it that has been sewing him together? His light, our love, your hope?
If our bodies are poetry in motion, cells signing to one another, are life’s intangibles threading Bede back together into the now.

If it is all those beautiful intangibles then how strong is that thread?
I’m not sure. But nonetheless here he is.

Resourceful as ever. Rebuilding himself from within and reinventing himself yet again. Shining his light and his resolve and his unconditional love.

So that even as we fall, as we fail, as we falter, Bede pulls us up and reminds us we are more than the mere sum of our parts. We are whatever we each choose to be.

Bede chooses to play with his brother and sister, to work hard in therapy, he chooses to love. He chooses to laugh in between his tears. He chooses to let it shine. He chooses to pull us in as hard and as close as he can.

Bede’s last MRI showed the cancer was growing again, significantly.

Bede’s symptoms have been intensifying but he chooses not to bow to them. Just as we feel as though it is time to surrender to the thought that he may be deteriorating he regroups, he dominates at life.

So tomorrow we go into the next MRI. Brought forward in response to his ever increasing upset.

I am too tired to hope for a miracle, I am not naïve enough to try but the thought of spending a moment of life without the glorious sum of his cells, without the villi that refuses to absorb nutrients, without the nervous symptoms that refuse to get organized, without the thyroid that refuses to make enough hormone, without the little body that refuses grow, without the bones that refuse to bear their load, without the eyes that refuse to sleep, without the brain that refuses to follow my plan for it, the thought of a moment without those stubborn clusters of cells just renders me useless.
spongey bone
Maybe that’s it after all. Maybe Bede’s presence isn’t in spite of his body’s failings but due to the stubborn, loving, determination that body has generated.

Because at each moment he has chosen us. As I once again hold him before he goes under and repeat those well worn words “you are strong, you are loved, you are important” we will choose him. With every last ounce of strength. For now and forever.

But we are preparing ourselves for the reality that the choice might not be ours for the making.

So as he heads into the scanner yet again we hope you’ll join us in hoping, praying, wishing for whatever is best for Bede.
He may be small, but he is mighty.

black and white bede

I want to be your earth.


issy and B

I want to be your earth so no matter what happens gravity will always bring you back to me.

I want to be your foundation, the ground upon which you build.

The dirt from which all the colours of your flowers bloom.
I want to be your earth so my valleys bring you far back from the edge and my mountains let you reach your potential.

Let you relax in my shade.


I want to be your earth.
So my sweetness can balance out life’s bitterness and the coolness of my seas will take the sting out of your pain and wash life clean.

I want to be your earth.

I want to be your earth, tie your feet to the ground and never set you free.

But deep down I’m not sure you exist for earth. If I’m your earth I’m scared that means you won’t always be with me.

So let’s be each other’s song and together we can dance on the breeze. Let’s be each other’s breeze to carry us all the way home to you and me. Lets be each others light so in the darkness we can both see.

But really I just want to be your earth so gravity will always hold you close to me.


I love you Bede.

A Bede Update.

many faces of bede

Once again there is so much to say that it is overwhelming.
First off the long overdue news…..

You stormed the heavens with us.
You loved, you hoped, you prayed.

Bede’s tumour looks stable. It hasn’t gone back down, it hasn’t grown.
The 6 months we were given has been and gone without us even noticing it’s passing because there was so much living to be done.

I want to jump up and down and scream ‘He’s done it!’ but I think the real proof will be in our next scan in December. Thank you for getting behind our bumble.
In reality we haven’t had much time to think about it there has been too much work to be done!
Bede is a bright determined adventurer. He’s an explorer.

bede walker

He no longer exists in a cold, sterile hospital room. His presence dances through our days. His belongings spill from every surface in our home and his cries and babbles and laughter fill every crevice and surface of our home, our car, our lives and our hearts.
He is determined and he is strong. I suppose his perserverence is nothing surprising but in this new setting, in rehab and intensive therapies, it is awe inspiring. I watch him, our little boy, who fought for his life and who is now determined to live.

bede water bede water 2

Bede loves story time, trying to climb things and music. One of his favourite things is standing in his walking frame and strumming the guitar.

He loves toys that he can control. I think its so frustrating for him not being able to speak yet so he loves things that have a clear cause and effect. He has started learning sign language to communicate with us and is practicing sitting up on his own

There is so much to say but really it boils down to this…

Our family has spent the last 5 months or so in our darkest time. Drifting from positivity. We repeatedly reached out needing a life rope and unfortunately for one reason or another none was there. Bede was well but despite this, we were not. We have been emotionally, practically, financially, physically at our breaking point. One thing has come after the other, a minor example of this was our car and belongings being stolen from our home.

While we have been able to delight in our children and take solace in some of our friendships it is hard to explain just how hard it has been and it has been lonely. Because no one can do it for you.

But we have put one foot in front of the other, and clung to each other and now finally the clouds are parting. We have a carer for the next 6 weeks which is some long awaited help. We feel like we can breathe again and tackle our challenges together and there is space to blog now. So after some unexpected time away, time that we needed to take care of our family, we’re back.

Thank you for holding this space for us.
Thank you for asking after us.
Thank you for letting us know you miss the blog.

Bede is well.

So are we.

The tumour update.

I suppose the moment for this blog has long past.


But it’s been too difficult to write.
Following so much joy and hope and just spectacular everyday-ness Bede’s last MRI wasn’t great.
We had been talking about Bede walking, about him going to school one day.
Our doctor walked into our rehab session.

“You’re not smiling”

“No I’m not”

“Is it because you’re just not smiling or because you have our results?”

“I’m sorry guys, we need to talk about the results.”

I clutch Bede to my chest.
How dare cancer do this to us now.
Not with his progress.
Not when he finally visits the park, participates in family dinner, explores.

Not when he is learning to live.
I desperately want to put brain cancer on hold.

This is what the moment you know you’re about to be told your child is dying looks like. You’d think I’d be an expert by now but I’m not.

bede flowers

This is what disconnected soul trauma looks like. A sunny friendly room, with two happy babies, a loving husband, and a man who is far too kind tasked with breaking my heart.
I slump onto Bede’s therapy mat frozen. Looking between my tiny newborn daughter and Bede. Talking to B, reassuring him even though he is oblivious.

I can’t bring myself to get up. I don’t want to. I know they’re waiting for me.

“Come on Is”.

But I cannot cross that threshold. I don’t want to go back into a world where even the golden moments are all about losing Bede. I know when I stand up I lose him all over again. I know what that is now and today I can’t bear the grief. I don’t want to cross that threshold. But here we are and mothering Bede as he deserves demands that I do. So I rise and I brace and I refuse to cry because there are questions be asked.
The answers are brutal. The tumour shows significant growth although we can’t know for sure how quickly it will take Bede its estimated he only has 6-8 months.
My worst fear that Bede has hung around just long enough to meet his sister seems to have arrived.

At night Cress wakes me up to breast feed but I cant get back to sleep. Instead I lay there wondering how I will mother Bede in death. I know we have always wanted to keep him at home and I wonder if and how that will be possible. How I will honour him.

I am hormonal, exhausted, lost and broken when a dear friend, in a comparable position, reminds me of my own words. Words I had given her years a go. “At the end of the day we are the lucky ones. Because we got them. We get them. No one else will ever know the privilege of mothering these boys.”

I remember all we have is today.

Roy and I focus. We regroup. We know we’ve been here before. Almost a year a go exactly. We once again book tickets to Sydney and we hold our breath….

Once again Sydney delivers a completely different perspective.
It lashes out exhausted hope.
Professor Sydney doesn’t think Bede is necessarily terminal. He doesn’t think we should rush the next MRI. He does think the tumour change that’s clearly visible on the MRI is within the realms of normal fluctuations. He disagrees about its significance.
He reminds us to focus on therapy and rehabilitation and nutrition. He says we may just have a very long haul ahead of us and we need to focus on minimizing Bede’s long-term disability.

bedes mandarin

We try and reconcile this with the prognosis Dr Perth gave us. Two men who are leaders in their fields. We decide to live each day is it comes, order a bottle of champagne and wake up the next morning and take the kids to Taronga.

bede cable car

So here we are again living in the in between. Waiting with bated breath.
But there is no waiting for Bede… he barrels ahead embracing life and learning and his brother and sister.

beach smiles

So now the next MRI is tomorrow. We’re leaning towards no more treatment if the tumour has grown. That’s a scary thing to put in writing in the public domain. It feels like a decision that is almost too deeply personal to share but that’s what this blog has always been.

If we choose no more treatment for Bede it will be because our backs are to the wall. Because they are all too exceptionally horrendous due to the unique complications Bede would face. I spoke a long time a go about the fallacy of choice.

So let’s call this the elusive tumour update. Not my best piece of writing, not my best piece of life. It is what it is and it is the best I’ve got right now.  I have a Bede update ready to go but I wanted to separate him from this. I think because who he is now seems so separate from this news.

I was at mothers group today and some beautiful catholic nuns help out looking after the babies to give the mums a chance to eat fruit toast and chocolate cake. I was talking to one of the sister’s about Bede’s scan tomorrow. She is a small gentle woman but with all the conviction in the world she said “Let’s pray and storm the heavens!” So if you have any prayers, love, light, hope, good vibrations, sunshine on a rainy day, wishes to send our way please do.

I just want our Bumble Bede, our brave little explorer, to be ok.
He may be small but he is mighty and more than ever he seems bigger than this.