Part 1 – Bede is living!

We have done it, we have won, life is good. The sun is shining, his sly, cheeky grin fills our hearts and his steadfast love permeates every corner of our family. Our beautiful Bede has once again risen to the challenge and defined his own course.

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No longer a fragile or struggling little boy that we need to stay hushed for –  Bede has thrived and is embracing life.  Bede loves being surrounded by different people, different sounds, smells, textures.  He is making new friends and trying new things. He is gaining brand new skills, the skills they called impossible. Thanks to his persistence and our dedicated team’s hard work he is now able to sit up completely unassisted! (yes! you read that right! He is so casual about it.)  He went to a performance of The Very Hungry Caterpillar recently and sat up the front with all the other kids and got his face painted for the first time.

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Bede’s babbling voice with gentle, happy, inquisitive tone and intonation fill the air as he practises words and clumsily manages a few. His contentedness soothes any doubt I ever had.

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Bede loves going to the dog park in the afternoon and seeing all his old and new canine friends as they bound over to his wheel chair and nuzzle him or the eager ones that slobber him in kisses to their owner’s dismay. He loves attending kindy and being cared for by the staff who engage with him with such skill and genuine care it has blown us away. He loves swimming lessons and his music therapy and protests his devoted and beloved physio louder than ever!

He is attending rehab and has been practising his sign language and has started learning to walk on the treadmill as we all sing “hoorah!”

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A workout this hard is serious business.

He loves pressing his switches with recorded messages or calling out to us with his laughter to remind us all he is at the centre of our world.

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Bede sits on the water’s edge at sunset, a total beach baby like the rest of his family, and lets the waves wash over him. The cool sensory tug of the waves comes and goes threatening to topple him over but Bede remains strong, determined and lapps up every bit of happiness that is washed his way. Bede’s always been good at going with the flow. That hasn’t changed.

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It’s been a year since I dared write the words that so many of my friends who have lived alongside brain cancer have thought but dared not say. A year that left me wrapping Bede and his siblings in a loving cloak of protection. Unable to share as I focussed on him and making it all better. A year that has left me timid and with no time to write but Bede was born to shine and I am privileged enough to be his voice. It’s been a year of hard, constant, vigilant work. Both exhausting and energising it’s been an absolute labour of love that we could not have done without our incredible support crew of carers, therapists, educators, family and friends. The good bits outweigh the bad. In that time as I dealt with whatever was in front of me I have also felt so overwhelmed by all the support we received from our local and the wider Australian communities. We have been able to give Bede support we never imagined. What thanks could ever be big enough? You joined us in changing Bede’s experience of his life. My mum said the thanks would come from Bede. Perhaps the best thanks is a life well lived and he is here enjoying trying salted caramel for the first time and pulling his little sister in for a hug.

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Salted caramel and sunset celebrations.

Life slowly returns to the hum of normal Roy returns to work, I return to study, Gus takes surf lessons and Cress is in daycare. Each day I am thankful for the ordinary and extraordinary and I love Bede even more.

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One of the boys.

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When you try and tolerate your sister for your mum’s sake but she won’t stop therapy-ing you!

Bede, it’s been a year since I felt life was too hard for you. I was wrong.  I should have known.
You are remarkable. Thank you for holding the faith when my own faltered.
Thank you for reminding me as you so often do that magic exists.
You are bigger than the ugliness of brain cancer and and as small as a tender kiss and whispered sigh.
The most complex life defined by the simplest love and purest happiness.
You are sitting on the beach with me. Right now. Perfect just as you are.
Our triumphant king of the point.
For this moment and everyone that has gone before and lies ahead.
Thank you.

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Then the doctor walked in… that friendly face we know too well. “I’ve looked at the scan”.

26 thoughts on “Part 1 – Bede is living!

  1. Just today I was wondering why we had not heard news of Bede for some time. Wonderful to read how well he is doing and such a delight for your family. Keep up the good work Bede. Heartfelt wishes, Ceri Wiercx.

    • Thanks Ceri, It’s very busy around here these days. Bede has therapy sometimes multiple times a day + his sibling commitments + his dad has been doing some work away + uni + friends + general life stuff! Life has crept back in! It’s certainly not the same as when I would write a blog to pass the time in hospital while he slept. I’m so grateful to you for thinking of him though and for leaving a comment.
      Issy

  2. Laying here this morning in bed reading this with tears streaming down my face.
    He simply is your tiny warrior and your momentary underestimation of his strength was caused by a mummas love and pure heartache in watching him suffer……that is true love 💙
    That is over and past now so its time to let it and all that surrounded that moment go and get on with the magic of living and we can all see how beautifully your amazing loving family is doing just that 😊
    Much love to you all xxx Pete

  3. So happy I was to see an update when I checked my inbox in the wee hours of the morning!
    Continue living and loving and thriving, sweet Bede
    x

  4. Hi Isabella, That is great news that Bebe is still on the earth

    Sent from my iPad

    Regards Rebecca Law-Davis

    >

  5. I read Bede’s story, it’s a beautiful to see that he is a fighter, a better one than I could ever be… you are a true inspiration little man… keep on kicking that cancer’s butt… xx

  6. This post has made my day week month year
    Go Bede you brave string amazing boy and go Tram Bede. I am humbled by you positivity and strength
    Blessings and positive thoughts always
    Karen xxxxx

  7. Darling Bede, you are a mighty champion~In your few short years you endured so much and still you fought on valiantly! So here we are today, the sun shining ever so bright. Bless you little man and Bless your beautiful family. Thank you for the update, your news has certainly brightened my day. Life is grand! x
    Lyn

  8. I’m so happy to see him thriving, the beautiful way he lives his life is a testament to how amazing he is but also the love he gets from everybody around him. I truly look forward to seeing his results and hoping as always that he is shining through xoxoxoxo

  9. I too have been wondering how Bede and the family were doing. Very happy to see such delightful photos and beautiful words telling us all what you have all been up to! Bede continues to be such an inspiration to all who have been privileged to know his story. God Bless you all.

  10. The strength and endurance of beautiful Bede shines brighter than any star in the sky! Keep on keeping on and doing your thang!!! Love Hayley and Gabriel xxx (Midwife at St Johns. Subiaco)

  11. This is the best news ever!! I’m just so happy that Bede is doing so well. I think about him often and wondered how things were going. Finding this update in my inbox has made my day. I hope things continue to improve, what a champion you are Bede!! Best wishes, Silvia 🙂

  12. Well done beautiful boy and well done to your beautiful amazing family x I continue to wish you a full recovery and long happy life you deserve so much Bede we all love you and are always here for you good and bad xxx

  13. So, so happy to read this update! Thank you for taking the time to give us news, kind regards from France.
    Rita

  14. That was a beautiful read! What a strong brave wee boy and so lucky to have you all as his family! Harley & Ben both fell in love with him and told us all about him when they got home. Great to have this wee update to hear he is strong and thriving! … much love Jackie xxx

  15. Now is awesome! You show the world Bede! We are standing right beside you, feeling your little ray of sunshine that beams from your smile. Such a wonderful post Issy!

    Sending you all love, light, positivity hope, happiness and peace for the times ahead xxx

  16. It’s been so long since we have heard about Bede and how you are all going. While I think of you often and keep you all in my prayers, it has warmed my heart today to see your beautiful photos and it is truly just remarkable to see how much your gorgeous boy has grown! His sweet little face and his lovely red curls – he has just changed and grown up so much – as has lovely Gus and Cressy too! Bede has achieved so much in his short life and has touched so many lives with his story that it is simply amazing! His life is a testament to his incredible strength, courage and determination as well as the love he gets from his beautiful family. Heaps of love, good wishes and prayers for all of you xxx

  17. Pingback: Part 2 – No one told Bumble | The Bede Update

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