This is not a typical Bede update rather a message.
The purpose of this blog was never to make everyone sad or heartbroken.
The joy of Bede is that he is so present in the now. He is enjoying his life and packing more love into it than most people do over decades.
After spending this morning walking by the beach with him and his dad I am filled with joy and love and brightness. I keep finding smiles welling up from deep within. That is Bede’s effect.
Bede is tired for the last few days, that is true, but we all have bad days. He is resilient and he is strong and even this morning he has been smiling, finding happiness in being held by his mum.
When we first heard the news of Bede we said to all our loved ones that while we appreciate the kindness of your sympathy we don’t want it. Instead use that energy on sending him love and light and positivity and prayers and filling his time here with all those things.
Share in our utter delight.
This blog is here to say… take note! There is an incredibly warm, bright, happy, loving soul on this earth and he might not be here long. Enjoy it while you can. There is weight and light and beauty and substance and grace and joy and brightness and depth and strength and composure and determinedness in him. Take from that and this blog whatever you like, but I sure hope sadness is not the only thing you take. That will not be Bede’s legacy, I assure you of that.
The Bede Update 
It is a honor to know him and share his journey. His beautiful smile fills my heart with joy with every photo.
Go Bede!!!
#teambede
He’s adorable,as much as it is heart breaking, it’s beautiful that you have so much strength to make sure his time here is spent with lots of love and happiness surrounding him. You guys should be very proud. xxx
How can I be sad when I’ve got the amazing luck to be close to, love and care for Bede. Having him in my life is something I’d never change
I VOTE TEAM BEDE! YAY BEDE!!!!!!!!!!!
I’m loving this beautiful blog – it makes me tingle every time I read it.
He is just gorgeous.
I understand the happiness. We’ve been undergoing a boatload of tests for my now 10 month old daughter, starting when she was three weeks old. We still don’t know what’s “wrong” or what her long term prognosis is (if there is one). Waiting on tests for neuromuscular diseases to return. But frankly, I am just so happy I get to have her. No matter what, she makes my day brighter, regardless of her issues. I imagine you feel very much the same way about Bede.
Stay strong & peaceful, the joy that Bede brings you each day mirrors the joy that you represent to Bede. You are all in my thoughts and each minute I can I will send you beautiful white light and hope. xx
Isabella your amazing, keep sharing your heart and the amazing Joy that Bede is, Bede’s journey inspires us all to remember how precious life is and how every day moment should be cherished and never be overlooked, and just how much joy your precious bundle is bringing so many people…… we stand with you and your family go #teambede
I’m still smiling by how cool, calm and collected Bede was on Saturday :o) makes me all warm and fuzzy inside. Such a beautiful boy
My thoughts and prayers are with you and your family, may your gorgeous son continue to shine #teambede
Is and Roy sending you love and light x
Bede’s smile is so contagious! You’re all in my thoughts and prayers xxx
You are an amazingly strong mum, and your son is just beautiful. The way he smiles really does appear to defy all that he must be going through – his calmness could easily be attributed to yours. Your ability to just ‘enjoy’ him is inspiring. Wishing you strength and love.
As much as joy brings joy to you his light reaches many more lives. What a gorgeous smile, still as big as the day I met you and beautiful Bede.
Beautifully said
I’ve just discovered Bede’s updates. I’ve been on 3b before, a long while ago now.
I’m delighted to ‘meet’ Bede online, and he will be in my thoughts.
With love, hope and smiles.
Colleen – Kaitlyn’s mum
Good morning Bede bop we do love you so.
I dont know you guys, I am not even sure how i came across your blog but what a beautiful little sweetheart your Bede is. What a delight, i bet he touches the heart of everyone he comes into contact with. How one so tiny can teach us so much about love I don’t know. My thoughts are with you, wishing you all strength and love and peace and joy and grace as you deal with this most ridiculously tough battle.
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