Bede’s back!

smiles for bede copy jpeg

I have tried hard to write a blog explaining all that has happened but there is no point intellectualizing it. It’s been a very difficult week.

I am awash with exhausted relief. Glorious exhausted relief. Far too awash to do justice to the calm joy that wells deep within me. Most of all I am thankful. His soul is here with his Mumma, entwined for another day. His weight and light and beauty and substance mingle with every fibre of my being.

Let me tell you something about Bede, all superfluities aside he is just plain awe inspiring and incredible.

Bede is here. As has become typical his little body rose up to meet the challenges it was faced with. He some how determinedly and resolutely put one foot in front of the other and got on with the business of living, balancing grit with beauty and light. He was in the deepest pit, one that none of us could see a way out of and he has step by step climbed his way out.

He is tired, as we all are, but he is slowly rousing from the fog that the large amounts of narcotics visited upon him.  I have said it before Bede doesn’t simply bounce back as you so often hear some children do. He is consolidating his position and then slowly and purposefully moving forward.

looking up to mumma.

I’m not sure exactly how or even the exact moment we turned a corner but we did, he did. When we were still in the midst of the fog just after the pain had passed but when Bede was heavily sedated he chose his moments and then shone through. He opened his eyes and was engaged. He could not physically bring his lips to a smile but every other part of his face lit up as he looked up at his family. The little eyebrow that twitches before a grin was insuppressible and his eyes sparkled.

Now slowly, bit-by-bit he wakes. He is not a 100% yet but he is in there. Today when it was just Bede and I snuggled in together the smallest smile skipped across his face…. Bede’s back!

The last week has been overwhelming for a whole number of reasons aside from the acuity of Bede’s illness, most of them distractions, and we are all physically and emotionally exhausted.

All is not solved, we are where we were before this latest scare but that is still so much better than we were last Sunday. We are waiting to see how effective this chemo is to know how much time we are afforded. We are slowly weaning back the oxygen and pain killers. Bede lives to fight  and love and light another day.

Tonight I bathe in sweet relief. I am wrapped in his warmth. His love is all encompassing and more grounded than ever. I remain madly and deeply in love with Roy and lightened and uplifted by Gus’ joyfulness. I am so incredibly deeply thankful. We have faced our darkest moments and once again Bede lit the way.

I am so especially thankful to Bede’s primary doctor for the care and time she has given not only Bede but also Roy and I that helped us find our way through. She did more than treat him physically, she kept hope when ours erred. We are blessed to have her on Team Bede.

Most of all I am thankful to all of you. Make no mistake your love and prayers and care are real and tangible and helpful and solid and amazing. I truly believe they are carrying him through. The miracle Bede needs is all of you. We were there, teetering on the edge of the cliff and I believe you pulled us back.

This blog doesn’t sound as celebratory as it should be, my exhaustion pervades. Feel free to cheer, dance in the streets, grin ear to ear for me. Bede did it again.

24 thoughts on “Bede’s back!

  1. What a wonderful update! Good on you for enjoying the little moments of joy, and we wish you all the best. Keep fighting on little Bede! 🙂

  2. Sun shines on the righteous and the sun shone bright today, another stitch in the tapestry of life. Go Team Bede 🌻🌻🌻

  3. My goodness he is remarkable! I just did a happy dance in the kitchen for you. He is amazing and you Roy and Gus are amazing too. I’m so thankful Bede is here!

  4. I’ve been checking in all week to see if there was any update on your beautiful little Bede. Crying tears of happiness for you, what an amazing baby boy 🙂 Enjoy all those special cuddles, lots of love to you Issy and your beautiful family xoxoxoxoxoxox

  5. So happy to hear this, the strength you are all showing is truly amazing!! Especially from gorgeous little Bede!! Thinking of you all even though we don’t know each other, you have touched all of us with your story.
    Stay strong gorgeous Bede

  6. Happy dance done for Bede and you. Still hoping and praying he proves the medical profession wrong! All at St Johns ask about Bede and his journey. So excited to be able to share this latest blog with them. We will be dancing in the ward tonight xx

  7. How wonderful! Happy for the beautiful moments Bede shares with his Mumma and Dadda. Thanks little Bede for sharing todays awesome achievements with us. Your strength and Team Bedes love and prayers give us much hope.
    Our Love to all of you. xoxo

  8. I came to read your blog after hearing of your story through my friend at Little Silver Prints.
    I cannot begin to imagine how you’re facing every day but I pray for your courage and strength to continue and that good health of your precious little one.
    From Orange NSW

  9. I am so incredibly pleased to hear Bede doing so well. I look forward to hearing of the small successes he brings to you. All my love adn healing thoughts.
    Francine and Blake xx

  10. Bede is so strong! Looking out for you guys.

  11. You deserve this moment to relish in the beauty of Bede’ spirited strength. What a fighter! I am relieved and encouraged for you and hope that I might be able meet your amazing son face-to-face one day. I too have a niece enduring chemo for a brain tumor and recognise the need to appreciate every small step forward. Bless you and your courage Bede. Michelle

  12. Happy tears this time 🙂 Your blog, and your sweet little man continue to move me…What an amazing little fella you have xxx

  13. Hi izzy and family,

    Your blog is beautifully written, obviously inspired by a beautiful soul in Bede. Everything you’re going through puts everything else into perspective and I have nothing but respect and wonder for how you are dealing with it. I’m not a religious person at all so all I can offer is every positive thought I can muster and send them to all of you. X

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