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”
Here I am quietly and calmly wondering what next.
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 inmy heart)i am never without it(anywherei go you go,my dear;and whatever is doneby only me is your doing,my darling)i fearno fate(for you are my fate,my sweet)i wantno world(for beautiful you are my world,my true)and it’s you are whatever a moon has always meantand whatever a sun will always sing is youhere is the deepest secret nobody knows(here is the root of the root and the bud of the budand the sky of the sky of a tree called life;which growshigher than soul can hope or mind can hide)and this is the wonder that’s keeping the stars aparti 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.