My heart is raw.

There has been so many beautiful and busy things happening in our lives lately. All the while there is Bede. Steady, unwavering. Our touchstone of love and hope and light that keeps us all grounded. That slows us all down. That makes sure we never get caught up in the business in life.

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It’s funny how elastic time is. Cress has just turned 1 and it feels like she was only born yesterday. That same year in Bede’s life feels like an age. He has accomplished much but he has also endured much.

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Last post I wrote about how Bede’s distress prompted me to ask the doctors to bring his MRI forward.

So there I sit. In that same room. With that same doctor. I am in the same clothes. Roy wears that same weathered look. But getting your heart broken is never the same.

The doctor asks if we need a support person. We laugh. We have made our home here in this moment. He laughs. I know what that question means though.

It’s growing again. We’ve never had growth in this many scans in a row. Not even in the beginning.

Cut to the chase doc. “How long?”
“Well lets look at the scan first”
“I just need to know”
“6 months. Unless the cancer spontaneously stops growing I think you have around another 6 months with Bede.”

But if having your heart broken is never the same what’s the difference this time?
This time the aftermath is brutal.

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My heart is raw. Because the truth is I want my son to die. I’m tired. He is tired. I want peace for him, rest. But I instantly hate myself because I know then that is all there will be. He will have no more growth, no more moments tenderly reaching out to his brother, laying next to his sister. He wont squawk away at his dad anymore, he won’t let me kiss him in the way only I can.
He will just be gone. That is not enough for my special light filled boy. Life is hard but death seems worse.

Roy likens it to having something you love more than anything else in the world, that you want more than anything else, that you treasure above all else but knowing you can’t have it. Knowing it’s better for everyone if you don’t. Knowing you need to let it go. It’s heart breaking.

All I want for Bede is happiness. I grieve that we don’t all get that.
I am angry that we feel so alone.

Roy is confident about life after Bede, that he will be able to go forward living a life in testament to him. That his legacy will be brilliance.But I am scared. Scared that without my steady ship, my touchstone, my beautiful gentle soulful boy I will crumble because my world will never be the same.
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I am scared that the woman that will mother cress will be a stranger to who I am now. So I try to smile as much as I can and love as hard as I can in the hope that I can build her up enough that she will weather having me as her mum.

We go on trying to be present, trying to soak in every single moment, utterly mindful of how precious each one is while we spend sunny staurday afternoons choosing toddler sized coffins that would never, could never hold all that our son is. My heart bleeds and I grieve. I am tired. My bones and muscles and every tendon and ligament ache.

But as the bitterness of life rages the storms are rolling in across that familiar ocean. I know this too shall pass.

As I type tears stream down my face and I pound at the keyboard because life is hard and even writing isn’t easy anymore because there is so many conflicting things to say. Because of course amongst all this grief there is light. Bede’s interminable light.


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We got a puppy!

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Bede has grown more in the last few months than he has in the past few years and I am reminded that often despite the agitation, Bede is the fullest version of himself when his tumour is growing. Gus says now there is just more of Bede to love.

He is immersed in his therapy at least three days week. He is building his upper body strength and undeterred by previous failings he is attempting to crawl. This kid is the personification of determination He is relishing laying on the grass in the sunshine with his brother and sister. He is laughing fuller and deeper than ever before unable to catch his breath as the giggles pour out of him.

Our little Bede who can sign and screech but can not speak mimicked the words ‘I love you’ back to me the other day and it was everything to me.
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Through all this sadness and fear and joy and light and grief and hope and uncertainty and love we have found so much comfort in our friends and community.  A fundraiser is being held for Bede on June 17 in North Beach. With an aim to making his life as meaningful and as happy as possible and his death as easy and as comfortable as possible.


I will post more details later but for now you can check out some of the details for the event on the Facebook Event page (CLICK HERE) or on the booking website where you can also buy tickets if you’d like to come down and spend an eveing with us and say Hi. We’d love to see you!

Our dear friends have also been kind enough to set up a gofundme to help us support Bede during this time and said some beautiful things about us:

I feel like we are in a fog and its confusing but one unmovable truth remains…
He is small but he is mighty. Bede shines.

55 thoughts on “My heart is raw.

  1. I’ve just seen your beautiful boy on ‘The Project’. I fell in love with him and your whole family immediately. My heart is just breaking for you all. I wish I lived closer. I would happily donate my time, I do not make this statement lightly. I have helped other families before. We are on pensions and dont have money. All I can do is pray. I feel so very helpless.

  2. Dear Issy, Roy, Gus, Bede, Cress and Harley.
    I so enjoyed meeting you all in Monkey Mia, especially Bede. I was honoured to have you feel comfortable to share your story. Witnessing your love as parents and joyful people was infectious. I hope you were as entertained by us as we were by your lovely family. Wishing you all the best for your continuing journey ahead. With love Karen.

  3. I just read your blog…I wish you more time I wish you God’s miracle…I pray for your family..God bless you….

  4. I am not sure if our last comment made it to you but there is never too many time to send kisses and hugs to Bede and all of you. We don’t know Bede personally but we love him to bits and Gus the beautiful brother and the little lady Cress. You are one amasing family and role models for everyone one of us in the community. Miss Ivy is sending Bede big kisses and hugs😘 We are thinking of you every day and hope Bede is is being Bede through everything life puts in front of him daily!

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