Whatever is best for Bede

imageWe’re home!

Our trip gave us hope and despair, peace and then lost peace and solace.

We will update on the trip when we have had a little more time to process and the official written opinions arrive. Unfortunately Bede was very unwell for the majority of the trip but was visibly relieved to be home with familiar voices and all his creature comforts.


It was very important to Gus that this photo of Bede laughing was included in this post.

For now his little soul is fighting his intruding agitation. His light rises up, unrelenting and unwilling to be quashed. He struggles to find his place of comfort but then he does and he laughs as deeply as he is whole. His sense of humour is intact, his cheekiness unscathed.

This morning as I type this his light is sparkling… all out shining and he is laughing

Today is MRI day and with both hope and fear in the air I thought I’d ask all of you, Team Bede,  to join us in hoping or praying that whatever is best for Bede is what will eventuate. Unselfishly, unreservedly, without any request more specific than that. Just whatever is best for Bede.

Have you got a little love to spare today? Let’s wrap him up in it.

Thank you all so much.

24 thoughts on “Whatever is best for Bede

  1. Dearest Bede
    I always have lots of love and positivity for you. I send it to you at the speed of sound! You and your family are in my thoughts every day. We all only want what is best for you. xxx

  2. I haven’t met you but I have followed Bede’s journey and shed a few tears for him. Sending love and strength to you all and sending positive vibes out to the universe. Lots of love xxxx

  3. Our little family is holding him in our thoughts and prayers. He is so big and smiley and he truly does shine so bright! Gus is right…that picture is just Bede complete…shiney happiness!

  4. Such a brave, funny little boy ( a big boy now, almost a toddler, I write this because as sick a he is, I see him like my own 20mth old toddler who like Bede is full of cheeky laughter) . I am as always sending our good vibes, and think of Mr B every time my own Mr N runs , jumps and plays. I hope his brave little soul can handle what comes next. Light, shine and pure joy to all of you xoxox

  5. Hello, Just sending you all prayers and loving thoughts. We all want you to know …. we care! Big hugs, with so many prayers. Helen 🙂

  6. ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

  7. My love support and strength may be a little late but it is continually there… Anytime you need us, just think of your blog and know how many lives Bede has touched and how much we are giving you all our strength.
    Love and hugs to you and more so that amazing lil man

  8. Love and prayers to you all xxxxx
    Thanks Gus for encouraging mum to include that laughing photo of Bede. Full of happiness, laughter and love xx

  9. Pingback: Tada! Bede’s back. | The Bede Update

  10. Pingback: Our christmas star. | The Bede Update

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