Lean in baby, lean in


Bede 2 days post surgery – he is irrepressible


What would I say if cancer were standing in front of me right now?

I’d say you hesitated. You underestimated
You hesitated and Bede in all his reckless abandon, in his relentless might, in all the glory of his wisdom empowered himself with light and love and the prayers of many.
I’d put cancer on notice.
It is no longer fighting a beautiful resilient baby. It is being dominated by a little boy who we can now see more than ever consciously makes the decision to fight. Consciously chooses to live. He is more than ever an active participant in his life and the direction he is taking. That direction is a life lived in hyper colour.

As always that fight does not come with the expected connotations of anger or resentment. It is fuelled by love and persistence and hope and light and gentle all encompassing strength.

bede icu 1

On Friday I wrote the blog while the doctors were still in the room and the nurses were starting to prepare him for theatre.
I felt guilty as though in the two minutes it took me to do that I was robbing him of my presence but his daddy held him and I typed. It had been a difficult few days and we had just had a difficult conversation in front of him and I wanted to make sure he went into that surgery wrapped in love and hope and positivity and boy did you guys deliver. Thank you.

You know what really came out of this past weekend is Bede’s incredible ability to inspire love and kindness and positivity and wild hope. Team Bede was in full force and standing behind him and you could really tangibly feel the effect of that.

So many times he has stood on the edge, and while I have no illusions about just how bad a place the edge is, so many times it could have been so much worse. Like he has stood on that edge and then just at the last moment, swayed by your love and his strength, he has leaned back. Back into our warm embrace and a life lived beautifully and gracefully and gently and most of all with determined happiness.
That happened again on Friday. They got in there and as though by a miracle inspired by your goodness and positivity his bowel was not perforated. It was severely infected. He was on the edge but leaning back and we all rejoiced. Give Bede an inch and he’ll make a mile of it.

Late on Friday night I was too exhausted, completely shattered to post here but sent this out to my family. I wish I had had the energy to send it to all of you….


He’s made it through.

He has been robust and resisting sedation although now he is out for the count and I am about to steal some sleep.

His gentle persistence pervades. His glow comforts. His inherent love and light not to be underestimated.

We’re not allowed hold him and he is not breathing on his own yet but it looks like he may have just done it again. Your love and positivity and heartfelt prayers may have just done it again and I am humbled and overwhelmed and thankful for just how much love there has been.

From the bottom of our hearts thank you and if you have any more please keep it coming. He remains worth it and he is fighting hard. He’s made it through.


When I wrote that, he had one tube running outside his body draining his brain fluid, one tube running into his penis emptying his bladder, one tube running down his mouth into his lungs breathing for him, tubes going into his jugular, his central line and one coming out his femoral artery that was giving us a constant dynamic blood pressure. It was a meeting of machines and the human spirit and in that moment I had no idea just what lay in front of us.

12 hours later his breathing tube was removed and an hour after that another one of his tubes and then I was allowed to hold him for the first time in 24 hours. As I held him he really came alive and he looked at me and laughed as though declaring ‘I’m here mum, don’t worry it takes a bit more than that to keep me  down.’

Then over the next 3 days he had serious complications associated with his brain and the tube draining his brain fluid. t was an incredibly difficult few days advocating for him as we knew it was over draining for days before the team did. They corrected the problem and he has since been recovering.

Then yesterday the surgeon came in and told us if the infection had progressed even by a small amount it was a sign Bede’s body was shutting down and dying. We got the x-ray and there again he was on the edge but leaning back. It looked as though he had improved significantly.

Through all this higgledy piggeldy up and down recovery Bede’s strength has been unwavering.  His laugh fills the room. His light ever luminescent gently dances through the air. His persistent love and life are soothing. His presence comforting. It’s all gentle and quite subdued in here but when I put my lips to his cheek his strength, his robustness, and his fight, reverberate through every molecule of my being. He is tired but he is unwavering. His joy unmovable. When he laughs he does so with his whole body and it shines.
This last couple of months feel too big in good ways and bad ways but mainly in a course altering way not to summarise and let you all know what’s happened but that will again have to be for another day. I think for now this is enough.

Today the doctors think the spine might have progressed slightly but his main tumour could be  smaller. That MRI is this afternoon and we’re waiting with bated breath. Never complacent, willing him with every ounce of our being to pull another miracle out of his hat.

We’re hoping tomorrow we will get to re-internalise the tube that is draining his brain fluid but of course that means more surgery.

Thank you all; for all you have already done and for your continued care, from the bottom of hearts, thank you.

Now lean back baby boy, lean back in to our love and positivity and wild relentless hope.
You inspire love and I want your soul and light to dance across this earth for a while longer.

Cancer you are on notice.

bede 2

we need you…

My heart bleeds with love and hope and the gentle strength that bede embodies. We are about to head into surgery for Bede who now has a perforated bowel which is threatening his life after an acute deterioration over night. We have just found out in the last 15 minutes and I’m taking this moment to recruit whatever you’ve got to give. Please if you have love hope soul meditation vibes care please take a moment and send it his way.

He is worth it and he is fighting.
During his deterioration this morning he stopped and tried to smile to let us know he was still there. He’s a gently persistent smiley fighter.
His doctors are backing him.
We’re backing him.
His nurses are backing him
we would really like you to to.
Thank you.

moving mountains

beautiful bede laughing

I know it’s been a while. We have been busy living the highs and the lows and basking in Bede’s persistent glow. He has been growing, nourished by our deep love and with an easy happiness that comes from being in your context.

Over the last couple of months we have had some beautiful times spent in the glowing sunshine, laughter wafting through the coastal air, sipping strawberry lemonade, feeding dolphins, dozing in the gentle southern sun and snuggling into the comfort of home. Wishes have been busy coming true. We have also had some extremely difficult times, especially over the last 3 weeks as I held his lifeless body to my own watching his heart rate drop and calling for help.

I have been putting off posting until I had the space to give the joy all the room it deserves and I do not have that in this moment. Bede is busy and so then are we as he makes his latest come back. I suppose I have also been putting off posting until I really knew what Bede wanted. From the lifeless boy we worried for to spending hours laughing last night he has shown us. He is fighting. He is undeterred. He is resolute. He wants life and all the wonder that holds and he is fighting for it.

Bede’s resolve is uncompromised, hope pours from him, his eyes glisten with promise and love and his inner joy that he has gifted the world with. His gentle tenderness is profound and unerring even as he scales the highest metaphorical mountains. He is no longer our infant son he has become our little boy. He is robust.

This post is me once again laying myself at your feet and humbly asking all those of you who have followed his journey to please get behind him today. He has another MRI. He has pulled some miracles out of his hat over the last few weeks. From nearly being sent home to die to the tumour possibly and miraculously getting even smaller without the chemo to his spinal cancer possibly taking off. There is a lot riding on today.  We are in limbo today waiting to find out if we are approaching end stage or if we are able to keep on making wishes come true. (Melbourne you are in our sights!)

We are tired and we still need to wrap him up in goodness. Today any love, positivity, hope, sunshine, good vibrations, joy, belief you could send Bede’s way are really needed. Our gratitude to each of you runs deep.