He is the wonder that is keeping the stars apart

I am overwhelmed by this update. Everytime I start writing I remember a new detail. Why haven’t I done this post before now? Why have I left it so long when so many of you have been so eager to hear of Bede?

Well because I try and pick a moment in time when I can give you all a clear idea of where were at and over the last two weeks the landscape has constantly been changing. Everytime I have found my feet the world has gone hurtling off in a new direction and so many times, as we are in this moment, we have been left waiting for time to pass, for something to declare itself, for the doctors to catch up, for confirmation. We haven’t been able to find our feet.

I have written pages of details tonight but that is numbing. It all boils down to this.

He fought the infection.

We got home.

The moment we were least expecting it, after a gorgeous night with friends, things turned.

No one could figure out why but I knew there was an infection.

He was struggling.

His oxygen levels kept dropping really low and he turned blue a couple of times over the coming week.

I thought there was an infection so I postponed chemo and him having a depleted immune system. The doctors were happy to forge ahead so we did.

Bede got worse.

There were CTs that said different things depending on who you asked.

His brain was swollen.

His brain wasn’t swollen.

The tumour had a fresh bleed.

There is no fresh bleed.

The tumour is swelling.

The tumour is not swelling.

These oxygen problems are from the cancer you need to brace for losing him.

This is not from the cancer but we cant figure out what it is.

You need to consider signing Do Not Resuscitate forms in the near future.

My strong recommendation is that you do not sign Do Not Resuscitate forms at this stage.

His brain ventricals are enlarged

His brain ventricals aren’t enlarged.

All the time in the background I know he has an infection and despite their best efforts they’re missing it.

They tap his shunt which involves inserting a needle in to the lump on top his head and drawing back and seeing if any brain fluid comes out. It came, that meant the shunt wasn’t blocked, that wasn’t the problem.

“We’ll just send some of the fluid off for testing just to make sure there’s no infection.”

“Issy, he has meningitis”

"Another infection?!?!"

“Another infection?!?!”

"You didn't listen to Mum and Dad again?!"

“You didn’t listen to Mum and Dad again?!”

"COME ON!"

“COME ON!”

Here I am quietly and calmly wondering what next.

I called Gus and told him Bede had another sickness in his brain. He asked if it was weak. It’s a hell of a lot weaker than Bede, my beautiful son.

Ultimately we don’t know where we stand. There are risks we are hoping to avoid. There are things we are hoping will happen. Right now we’re in limbo. Waiting for the world to shift again.

In two weeks when it has felt like the world has turned a thousand times and the land scape shifted with each one of those turns one thing has stayed unmoving, Bede.

He is solid and he is heart breakingly beautiful.

His soul is profound and wraps me up as his little fingers reach out and they find my lips or my ear and they explore, tip toing around my face, defining his limits.

He is soft and tender and divine and he glows. Softly and gently and unassumingly his glow lights the way.

Our secret is before every defined fork in the road like surgery or an MRI I whisper to him repetitively

“you are strong, you are loved, you are important.”

Willing him to know his worth. Willing him to know his foot print on my heart is deep.

Willing him to know I recognize his fundamental greatness and I promise the world has taken note.

I care for him so much and in so many ways. I care that he knows the world is beautiful and that hears beautiful words but sometimes I am at a loss for words that are filled with beauty. So I read to him a poem. A poem I rediscovered when I was pregnant and felt so deeply back then that this poem was intrinsic to our connection but didn’t understand why. Usually I have my own words but when I don’t I borrow Mr Cummings’ because if I know only one thing it is that Bede is truly a once in a life time wonder.

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart
i carry your heart(i carry it in my heart)

There is so much more to say but tonight I am overwhelmed by the telling. I will come and share all the happiness and all the triumphs of the last few weeks over the next few days because of course with Bede there is always so much joy. I will better update you on Bede’s little soul not just the happenings, tonight I knew many of you were waiting to know where we were in this moment. Where we are is that brain cancer is throwing Bede the worst its got and he is meeting the challenge with grace and beauty and gentleness and fortitude and light and love.

I am painfully thankful for my son. Now we are watching, once again, the mighty Bede demonstrate his grandeur and Roy and I are in awe of him.

26 thoughts on “He is the wonder that is keeping the stars apart

  1. Oh issy,
    Thank you for finding the strength (and I don’t know how you could possibly find any more than you have already) to make another post.
    My prayers are with you and if course with your amazing son.
    Love Bec c

  2. With a tear in my eye I thank God for Bede and his lessons to us all about bravery and resilience and strength. I am appreciative of your ability to put down such beautiful and powerful words to describe this journey. My heart aches for you all and my thoughts are with you each and every day. Michelle Toye

    Sent from my iPhone

  3. I have tears streaming down my face as I read your incredibly powerful and heartfelt words – thank you for finding the words and the strength to share Bede’s journey, despite the most unimaginable roller coaster ride of emotions you must be going through – your raw honesty, your grace, your eloquence is just astonishing, The reality of your situation is heart-wrenching. The depth of a mother’s love for her beautiful son touches my heart. The beauty, strength and resilience of your lovely boy moves my soul and leaves me in complete and utter awe – to say Bede is a remarkable human being does not do him the justice he deserves. My thoughts and prayers for all of you are constant. xxx

  4. I’ve been trying to find the words to convey how very much I wish for Bede to come through this. I have such faith in medicine and science, that Bede will have a helping hand in his fight and in the same breath I see how much doctors are bewildered and confused by this, I see how in many ways, you have been let down by medicine.

    I am in awe of you and Roy, of your courage and persistence. There is no doubt in my mind that your careful observation, advocacy and love is the vital thread helping Bede through.

    I pray with everything I have that Bede will be free of this infection and that he will be able to spend time with his family, to be filled with love, peace and joy. Our thoughts and prayers are infinitely with mighty Bede xxxxx

  5. Hi Bede , we do not know each other but we know your brother’s friend Maya. Maya and our son Nicholas were good friends and they used to play together in Trigg. We now live in Glasgow, UK, and we have got your message from Maya’s mum, Catherine. Please be sure that we will keep your family and you in our prayers. Unfortunately some of the babies have a tendency to get bugs and all types of sickness more than others. Very sorry to know that you have got some of the nasty ones. Not fair! Rest assure that our prayers and good thoughts will help you will be very happy and healthy and as soon as possible you will be going back to your home. Love and peace, Sandra Pereira and family.

  6. Again you bring tears to my eyes, such a beautiful boy and such an amazing and inspiring mum and dad.
    I so wish I could do more for you but pray and wish and hope with all I have and my heart that your gorgeous lil man continues to defy and beat every challenge that is put before him
    Xxx😘💖

  7. Your story touches me every time. .I dont know you but you an your family an your gorgeous son are in my thoughts and prayers always. . May bede come through this with s smile on his face. . May you continue to find joy in every moment with him. . Lots of love

  8. What amazing things the four of you have achieved against so many odds, keep going there are many more blessings to come for you all.

  9. There are many of us out here whom you don’t know, who are thinking, hoping, praying, lingering, in awe of your strength and love.
    Maureena

  10. I don’t know you and I’m not even sure how I came to know of Bede, but for a while now I have been checking in regularly. Just wanted say that Bede is noticed and thought of with love and hope.

  11. Thank you for sharing your beautiful Bede. You are all inspiring. May ou always be surrounded by love, strength and light as you walk this journey and may this journey soon take a turn for the better and healing. Thoughts are with you often. Xxx

  12. We don’t know each other but on the 3rd June I was so moved by your words about your precious little boy that I have been checking in now and then, praying and hoping for good news. Your strength and courage is an inspiration to us (mums) . Bede, you truly a brave, resilient beautiful boy and I pray that your months of fighting pay off for you. Thinking of you and sending you prayers for strength and hope.
    Josy xx

  13. Dear Issy and Roy. You and beautiful Bede and Gus have been in our thoughts and prayers for many weeks now and we have been so worried about you all. If you have the strength, time and wherewithal it would be good to know how your lovely boy is going. Little Bede – your whole family – have touched so many hearts and lives. Wishing you abundant love, peace and strength. xx

    • Thanks for your thoughts M, I will put up a post today. I have been finding writing more difficult than it was lately. We are doing very well and have been enjoying some wonderful ‘normal’ time at home 🙂
      Issy

      • I am so glad to hear that Issy. How wonderful that you are having much needed family time at home. It must be such a relief and, undoubtedly, very therapeutic for all of you to have some ‘down’ time together. You are so thoughtful to respond to my message and I really appreciate it. I can’t begin to imagine how difficult it would be to write at times. Know that through your beautiful and heartfelt words, even for those of us who are not fortunate enough to know your family personally, give such an amazing insight into the incredible depth, substance, resiliance, spirit, beauty and strength of your lovely baby boy and of your whole family. Love and prayers xx

  14. Hi Isabella,
    I just read your amazing blog and I am speechless and have no words of wisdom for you because you have really so succinctly detailed your journey and emotions and shared beautiful wisdom for everyone.
    Our children are a gift and Bede is such a precious one, just like my Matthew. All I think about is Love is Stronger than death and that gives me some solace. Matthews journey has been a similar one of pain and visits to ICU and he doesn’t bounce back either but Bede’s approach. Considered and astounding the doctors at every turn. No one knows how long we will be here and our journey has taught us to make each day the best we possibly can and whilst it has been the worst eight years of our life it has also been the best eight years. Sending all our love and strength you Bede and your family and I will keep you all in my prayers xx Shelley C 3B

    • Shelley it was such a treat to meet you the other night you are so lovely and I feel very humbled that you took the time to read the blog. You have such a generous spirit. I hope one day I get to meet Matt although I am content in the knowledge he has had such a positive impact on me already. His brilliance is far reaching.
      I hope to see you again soon when both our boys are travelling well. Will be thinking of you and sending you positivity and prayers.
      Is xx

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