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.
Please make sure you’ve also had a read of Part 1 – Bede is living! Bede deserves for all his joy to be seen.
For the first time in my life I can not find the words. He is unbelievable, strong, an exception to the rule. We hope you have many more days of happiness ahead with your Bede
Miraculous Team Bede, our hearts are full of love and admiration. Bumble is one very lucky kid to have been born of such strength. Far-reaching hugs from Michelle and Richard ❤️
Sending you lots of love ❤️ No words can make it better thinking of you all
Your words as always are so beautiful. I have never met you or your lovely family but feel as if I know you through your words.
This sweet little boy in the other side of the world has touched my heart.
God bless you all ❤
Always in our thoughts-love seeing the pics of how much he has grown & progressed!
A gentle fist pump to the irrepressible Bede from Reubs & a soft squishy cuddle from me.
Katrina & Reuben xxx
No words, just tears at what an incredible human our Bede is. Sending love from Matty and Sam ❤
Just sending my love and hopes to you all, hold tight to each other xxxx
He is mighty.
I’ve been checking your posts recently and shared a smile when I read post one.. He sure is mighty!
A mothers strength is something to be admired- and every mother, father, relative and friend is right there supporting you.
I’ll never forget our first chats, our first meeting (even if it wasn’t in person) whilst pregnant. Bede will forever be in this mothers heart. Sending love, hope and strength, all the way from Tassie to you! 💙
My god Izzy. How great is Bede…..and the love you guys give him…..and get back in return.
Your faith and love within your family unit is inspiring and humbling, I hope you get many more neck nuzzles and stories shared. Record as much as you can and know that your love is never ending.💜💜💜
First of all…. I love Nico. That song is just so perfect.
I’m watching my 9 month old bounce in his exesaucer and crying. How much love can one tiny body hold? Bede is a true miracle and an example of how love can do what medicine cannot. He is lucky to have you and you are lucky to have him. But you already know this 🙂
There is no reason to think of time left, only the right now. Sending love from across the world to your family ❤️
Amazing, beautiful and powerful Bede. He is such an inspirational human being. He always has been.
So very proud of you all. Your words just sum everything up that us 3B families feel for our children.
Love, hugs and a rasberry for Bede.
Sandra, Chris, Georgia & Cal 💋💋
Beautiful as usual Isabella, I feel your joy, pride and heartbreak and marvel at your strength and acceptance. You have touched the hearts of many of us with your stories of your beautiful Bede. What a gift to all who know him and to us who don’t. Bede chose the perfect family when he chose yours. Sending love and light to you all, especially Bede.
Bede is a living miracle of love – yours – his. This world is not good enough for the likes of this Mighty Man
Oh my, Bede, you truely are a gift from above. You have shown us how amazing you are and now even more so. Your light, your strength, your unconditional love to life! I wish you and your family all the strength, light, positivity and love to what may be ahead of you. Team Bede is with you all the way xxx
Thank you so much for updating.
Bede is such a beautiful humble boy. I wish I could cuddle him. Looking at the current picture and reading how you describe Bede has washed a wave of calm over my heart.
Although my eyes are leaking and the pit of my stomach hurts.
I hope, as you all have been doing, keep living simply and happily when you can and breath Bede deeply into your souls.
I’m so amazed and very thankful how Bede chooses his own path.
Lots and lots of love to you all 😘✌️💜❤
Hugs and kisses and love to you all xxx
Touches the heart and soul – with love to you all and especially the “impossible” Bede xx