Hold this space

We have so much to share with you all. As soon as we have had enough time to sit with all the different pieces news and process them ourselves, as a family, I promise you we will.
As soon as I feel like I can adequately convey the light and shade of it all I will.

In the meantime I wouldn’t get too invested in any of the third hand whisperings that are doing the rounds and I can’t  let them rush us.

We have some more big positive posts coming up and we can’t wait to share them with you.

For now here is Bede.

imageHis agitation has passed. He can’t tolerate any feed at the moment and has been losing weight. He ended up needing a general anaesthetic just to get a drip in so we could hydrate him and yet he does not falter.

Bede is irrepressible, unstoppable.
He is nearly crawling and always laughing.

He is growing and developing.

He is hope.
He is light.
He is shining.
Busy embracing life and rolling around after his brother or the dog. He is enjoying himself.
I can’t help but smile as I type this just thinking of him at the moment is such a delight. He is so happy and cheeky and fun.

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Thank you for your patience, for standing with us. Thank you for your love.

We are both so grateful

I promise the updates will come soon.


Issy and Roy

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.