The Biology of Bede.

I’ve gone back to uni. In the hope of completing my degree and Bede hanging around long enough for me to be able to afford all the services I wish for him.

bede studying

Bede’s been helping me study.

One of the units I’m studying has a strong emphasis on human biology.
Everything featured in the first lecture on that aspect of the unit related to Bede.
The tentacle like villi that line the gut, the sympathetic and para sympathetic nervous systems, the thyroid, the structure of bones, the grey matter of the brain, the list went on.
Then we moved to the lab and I started looking at some of these things under a microscope.

the brain 1

Cellular structures, as pretty as art.
the brain 2
It really hit me that Bede’s body is failing him on the most basic, fundamental levels. That if we are the sum of our parts Bede is crumbling from within.
No wonder he has been crying so much, no wonder at times the fight has felt so insurmountable.

So what is it that has been sewing him together? His light, our love, your hope?
If our bodies are poetry in motion, cells signing to one another, are life’s intangibles threading Bede back together into the now.

If it is all those beautiful intangibles then how strong is that thread?
I’m not sure. But nonetheless here he is.

Resourceful as ever. Rebuilding himself from within and reinventing himself yet again. Shining his light and his resolve and his unconditional love.

So that even as we fall, as we fail, as we falter, Bede pulls us up and reminds us we are more than the mere sum of our parts. We are whatever we each choose to be.

Bede chooses to play with his brother and sister, to work hard in therapy, he chooses to love. He chooses to laugh in between his tears. He chooses to let it shine. He chooses to pull us in as hard and as close as he can.

Bede’s last MRI showed the cancer was growing again, significantly.

Bede’s symptoms have been intensifying but he chooses not to bow to them. Just as we feel as though it is time to surrender to the thought that he may be deteriorating he regroups, he dominates at life.

So tomorrow we go into the next MRI. Brought forward in response to his ever increasing upset.

I am too tired to hope for a miracle, I am not naïve enough to try but the thought of spending a moment of life without the glorious sum of his cells, without the villi that refuses to absorb nutrients, without the nervous symptoms that refuse to get organized, without the thyroid that refuses to make enough hormone, without the little body that refuses grow, without the bones that refuse to bear their load, without the eyes that refuse to sleep, without the brain that refuses to follow my plan for it, the thought of a moment without those stubborn clusters of cells just renders me useless.
spongey bone
Maybe that’s it after all. Maybe Bede’s presence isn’t in spite of his body’s failings but due to the stubborn, loving, determination that body has generated.

Because at each moment he has chosen us. As I once again hold him before he goes under and repeat those well worn words “you are strong, you are loved, you are important” we will choose him. With every last ounce of strength. For now and forever.

But we are preparing ourselves for the reality that the choice might not be ours for the making.

So as he heads into the scanner yet again we hope you’ll join us in hoping, praying, wishing for whatever is best for Bede.
He may be small, but he is mighty.

black and white bede

24 thoughts on “The Biology of Bede.

  1. There are no right words but I hope any words I type will let you know Bede is in my heart and my thoughts and has been since the start of his journey and I send love to you all. Bede is a gift to us all X

    • Thanks so much. Lynn, we completely understand not knowing what to say so we deeply appreciate it when people say whatever they can. It reminds us of all the love out there for Bede and that comforts us.

      • What a touching story of this little Boys life, i have just read. I applaud you as a family , and wish this brave little Boy all the best. His strength is a true sign of the human spirit. His determination is outstanding. You keep fighting Bede.

  2. Darling Bede, I close my eyes and think of you, surround you with the warmth of love, draw on the universe to give strength to you and your family, Darling Bede, Mighty Bede fight on little man…..Isabel, you continue to inspire me, how lucky Bede is to have chosen such a family and how lucky a family to have chosen Bede….love and light to you all….💙

  3. Sending all my love and positive energy to Bede and your family right now. He’s being carried by the most amazing parents – you guys leave me in awe.
    Thinking of you all as he goes into this next scan…
    You’ve done so much little man, be proud of yourself xxx

  4. Have followed Little Bede’s. Thank you for sharing his journey with us. Praying for a special little boy & his amazing strong family xo💚💛

  5. Your words touched my soul, your pain i felt deep in my heart as a mumma.
    Your precious little Bede is loved, he is so loved not just by you and yours but by the invisible army of those of us like me who will never get to meet Bede but who love him and pray for him all the same.
    Love, strength and prayers to you all 💛

  6. You blow me away every single day… With all you have to endure, with all beautiful Bede has to endure you still find time to expand yourself, your knowledge and your world..
    Sending you, Bede and your family all the positivity, strength and love you need to continue xxx 😘

  7. Beautiful Bede, you are strong, you are loved and you are mighty and you are blessed because your family is too!
    Thinking of you all.
    Love the Andersons xx

  8. Dear Issy and Roy,
    My first reaction is ‘oh no’ but then I quickly realise that there is nothing ‘oh no’ about Bede. He is just the most amazing young lad who has personally made me stop in my tracks, he makes me stay on track and he inspires me to move forward. I join you in your hope for a miracle and will do anything in my power to buoy you regardless of what comes.
    With you, M x

  9. Sending you all the Love, Light, Good Vibes, Positive Energy and most of all Hope.

    A family and little boy who I have not had the pleasure to meet, but I think of you all often.

    May your strength carry you through this time as I know, being part of Team Bede, I am willing with all my strength that a miracle comes and shines on you all. Xxx

  10. Dear Isabella and family, my thoughts are with you and I send you lots of love and light and positive thoughts. Bede is indeed mighty and strong and just amazing. Stay stubborn Bede, let your light shine through gorgeous boy. xxxxx

  11. Dearest Isabella, I read your posts about Bede and your words are lyrical and beautiful and positive and at the same time tear at my heart. It has been two years now on 28th of January since our gorgeous boy Matthew died. The months after his death I read a book called The Emperor of all Maladies a biography of cancer and wondered how he survived at all let alone almost nine years post his diagnosis at 8. Their survival is not just the sum of their cells but the wondrous and powerful and pure love that surrounds them and is within them. Simply Love is stronger than anything. So I am sending you all an insurmountable amount of love. 💓💛💓 Shelley Carulli

  12. You are always be in our minds and hearts Bede.. If only love was enough xx
    I hope that your tiny body feels our love and feels our light and you and your family feels some comfort.. It’s all we can offer you but we send it in waves.
    I hope you get some longer periods of peace and comfort xx

  13. When your precious baby Bede was only a few months old, a friend told me about him. I’ve been following your blog ever since and sometimes check several times a day to see how Bede is.

    My heart swells and breaks at your posts but not a day goes by where I don’t think of Bede.

    I know I’m just a stranger on the internet but I want you to know that my family of 4 in Adelaide thinks about and prays your family often and we certainly will tonight.

    Bede certainly is mighty xx.

  14. Precious Bede . I can’t change anything or make it better for you . When your time comes to go over the Rainbow , you wont be alone . My girls will be waiting for you . Mum and Dad , I can’t change anything ; just wrap you in a cyber blanket of love and thought .

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