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.

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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.

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.