A baby of substance

Bede is already so soulful. Every second person, be it a doctor or a stranger, will comment on what an old soul he is. He gently shines and he reels everyone in. Nurses openly tell him they love him, strangers are drawn to him, his brother adores him and through it all he smiles. He is calm and placid and special. When you hold him he melts into you and that feeling is sublime.

From the day Bede was born we have known there was weight and substance and beauty and light all melded together in him.

He loves to look at the world and will try and have a conversation with anyone who stops long enough to listen. He is curious. He is unlike my other son who was a bundle of boyish joy, he is calmer.

I never knew it was possible for a baby to deal with illness with grace but Bede does. He does not simply bounce back as you so often hear children do. He takes a moment, considers, consolidates and then moves forward. He does so calmly and purposefully.

He softly shines and he has a gentle determinedness.

For all these reasons and more as a couple and as a family we are committed to fighting this cancer. To rising up and meeting it head on. We firmly believe if anyone can carry him through this with grit and with love it will be me and my husband. We are also committed to not ever fighting just for the sake of it. To making his life as comfortable and as sweet as possible.

Please check out the magnificent Bede’s story under the home tab at the top of the page.

27 thoughts on “A baby of substance

  1. That’s our boy and we love him just as he is. There is so much to love and admire, his wonderful parents, his wonderful brother and him (or should that be he?).

  2. “A Baby of Substance” What a beautiful & accurate description. “Calm, placid & special” not a truer word spoken. Loving parents and a beautiful brother, to see Bede through this fight. He’s a winner for sure! Then you have “Team Bede” all praying and keeping the faith. Go Bede Go!…beautiful strong baby boy!

  3. Pingback: Baby Bede | Make All Things New

  4. Faith… Fight… Forward… Free…

    Go Bede!

    Issy, Roy, Gus, you have the most amazing & courageous little boy, stay strong, we wish you all the strength in the world

  5. Absolutely loving your blog and updates Iz, what an amazing little man you have and he is incredibly blessed to have been born into this family. Thinking of you guys heaps and heaps. Looking forward to cuddles xxx

  6. con what a beautiful boy my thoughts and prayers to you all having gone through my youngest sons baby illnesses i know how gut wrenching it is stay strong together forbaby bede love lynne

  7. Your beautiful boy has touched my heart. How brave he is and what an amazing smile. My thoughts and prayers are with you little one. X

  8. Pingback: The sky is falling | The Bede Update

  9. My Heart goes out to you at this time , so much suffering for such a small soul. I can only imagine what you are going through, I will include you in my prayers, Fight Bede

  10. Those beautiful soulful eyes – I just fell in love! The courageous like Bede and you and your husband are rewarded. The pureness of your love surrounding your son and nourishing his calm fighting spirit is so luminous I can see and feel it from here.
    Fight on with every prayer.

  11. Hi, I’m a friend of a friend. I wish Bede and his family all of my best wishes. The courage, dignity and strength that I see brings tears to eyes and this is something no person, child or parent should have to go through.
    Keep shining Bede, you’re a little star and so very strong. You’re in our thoughts and prayers every single day, keep fighting little one xoxox

  12. Oh beautiful Bede. I had the pleasure of being touched by your little spirit whilst you stayed at SJOGH Subiaco (very early days). I got to meet your loving parents and had meaningful chats to your mum about the meaning of baby names (yours and my baby to be at the time) I shared his name to your mum (only a handful of family knew). Now I am a mummy of a truely beautiful soul named Gabriel. I can only hope and prayer you sail gracefully through this thinking of u and your family xxx

  13. Pingback: The balance of power. | The Bede Update

  14. May God Bless you and especially Bede with a miracle of defying the odds your darling son has been given,as a mum I’m so heartwrenched at just the thought of what and how you must be feeling,I thought my 14yr old being diagnosed with Chrones was bad,we all would love our babies to live a purfect and trouble free,pain free successful life.
    We are blessed to at the very least not have this diagnosis,we have simply been severely injured in an MVA and for this our children were stated to be at best in the care of their maternal aunt who has consequently kept our babies away from us especially since my diagnosis of Luekamia.Nothing compares to your heartache and pain though.
    I pray for everything to be well in your world as you wish,I have no judgment and respect your decision with faith it is the most correct.What a wonderful family 👪 love and prayers go to you all,my inability to hold,hug and be with my children I am able in a way to empathize with the pain and emptiness within your family💕❤❤🙍

  15. i have often wondered aboit your family where u are how you are doing. i think we met once at pmh when my boy was younger as we are there alot. and i remember an srticle written about how you had been treated by them and i tried to reach out after the same was done to me. i want to send you my love and light and want you all to know i am thinking of you. you are an incredible family ♡
    kat from karters fight

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