Just know that you are loved.

As I sit here over your resilient body know that you are loved.

As my tears turn the fine embers of your hair to liquid gold, know that you are loved.

As my tears roll off your gentle skin and I wish they could wash this away from you, know that you are loved.

The tears are not defeat, they are resolve. Each drop filled with grand, fluid, soul altering love that wells from deep within me.
I feel your own soulful, gently determined, resolve in each laboured breath you take. I am pleading with you. Stay a little longer and know that you are loved.

As I cover your skin in gentle kisses I soak you in and I pour myself into you.

We can sit in the silent solitude of prayer, let that depth wrap you up and know that you are loved.

This is it. This is the precipice. This is the edge of the cliff. We’ve made our home here. Now lean back sweet boy and let my tears wash the fight away. Just lean a little bit closer and know that you are loved.






Bede is out of the ICU and avoiding being returned.

Small but mighty. Small but mighty

Thank you Team Bede for all the love you are bringing him. 

Issy and Roy

Existing in the privilege of tonight.

My body wants to put you down so I can stretch out. But I know the rhythm of my breath is helping regulate yours.

I want to go home and sleep, hand you into the arms of your ever loving daddy, but I know tonight the rhythm of my heart is helping regulate yours.

I know if you were awake and lucid you’d be asking for your daddy by now but this is where the depth of our connection lies. In the unconscious, the instinctual need. Tonight you need me. Physically. Somehow the synapses and circuits and bio-chemical fireworks of our bodies anatomically dance to the same beat. Two puzzle pieces, locked in place. Two working parts of the same machine. The common goal is to exist in the privilege of tonight. To just hold one another and hold on lovingly tight.

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The gentle light that emits from your soul dances across the air coming back to rest on the tips of your golden hair and together we glow in tender love.

So tonight I ache.
I am exhausted and I want to go home. But tonight you need me and honey, I have always needed you.

My body is empty, my heart is full.
Together. As we were made to be. Existing in the privilege of tonight.

Our precious Bumble Bede was admitted into ICU earlier today. It was an extremely difficult night.
We love him deeply.

Let’s bring Bede home.

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Bede has found his way to his joy again. We remain depleted but Bede has been reclaiming himself which has given us some sweet relief.

Bede needed surgery to explore the source of his internal bleeding, had multiple biopsies and had a special feeding tube inserted into his stomach which is something we’ve been planning on for a while. My understanding is that he is one of two children in the hospital, likely the state, that has this tube. The purpose of the tube insertion is to give him a better quality of life.

Bede was off pain killers in under18 hours and smiling the next day. Like a champion.

The bleeding stopped.

Then slowly the vomiting began. By three days ago it was the first time we had seen Bede in pain in a long long time. I was once again in the position of tearfully saying ‘there is something wrong with my child’ and having people hear that, believe that but have no answers.

Well we found our answers and Bede is heading back into surgery today to HOPEFULLY correct a complication from the last surgery.

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Bede has been reclaiming himself. Slowly the requirement for sedation was easing. He laughed more freely. He is tolerating being upright again. He plays. He is happy. Then a unsoothable surge of pain interrupts him. It is unlike the agitation of the last few months as soon as the pain passes he is back and wanting to play music.

I am writing this on my way into see him before the surgery. We’ve just been on the phone together and he is laughing big belly laughs in his daddy’s arms.

I am writing this in the hope that you will all get behind Bede today. Send him love, prayers and positivity. Every time I reach out to you all asking for love and prayers and good vibes he turns a corner. He is fighting the good fight with peace and love and this bubbling infectious happiness that is so filling. The melody to my soul. When people play with him they laugh or cry. His light is bright.

He deserves for this to work. Let’s bring Bede home. Let’s carry him there on a wave of happiness.

Bede may be small but he is mighty.

Let’s bring Bede home.


Apart from everything it’s ok.

There is so much I have wanted to say to each of you, all the valued members of Team Bede. Things like thank you, Merry Christmas & Happy New Year but I have been struggling to post. On paper things are getting better – there is hope for Bede, his pneumonia has resolved and we made it home.

In reality things are tougher than they have ever been. Bede has been screaming a lot. Roy has not been able to work for months now because it literally takes both of us to care for him and so in every aspect of our lives we are seriously struggling. Bede is in a lot of distress and no one knows why. He screams through excessive amounts of sedation. He is on a lot of medications and no one knows why he is needing it or why it’s not being effective.

Everyone is lost.

We have been drowning. We have been struggling to retain our positivity as Bede bashes large bruises into his own head and we get anywhere from 45 minutes – 5 hours broken sleep a night.

It feels fake to share all of our happy news without acknowledging Bede’s reality. So I think it is important to do that. As always though there is light and shade and balance to be found. The distress and trauma has been peppered with a few peaceful happy moments.


Bede screamed 20 hours a day leading up to Christmas and then managed to have a mostly beautiful day with his family.

One of our gifts to Bede was an inflatable swimming pool and 100s of coloured balls to fill it. He would have just been happy with one!

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christmas night cuddles

christmas night cuddles

Bede also turned two.

The small family party was a mix of Bede’s favourite things… Katy Perry, Lorde and mostly Jack Johnson played in the fresh air, bubbles floated on the breeze, we only served Bede’s favourite foods. Bede was surrounded by people who love him. Once again he seemed to ‘come good’ for a couple of hours. Laughing and smiling and settled.


sucking on a syringe of watermelon smoothie

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There is joy and despair and light and shade here. I am sure there is balance to be found. I have always strived to make this blog such a positive testimony to the joy and hope and brilliant light that is Bede. But it has also always been true. This is his truth. Right now it is hard.

He has fallen into such a difficult space. His face bleeds when we change his tube tape, he needs to be held a lot, his unrest is almost all consuming. Bede is still there. His light uncompromised. Temporarily obscured but glowing. His cheeky smiles and all knowing eye rolls remain. His gentle, strong, peaceful love is permeating. The hope, the magic, the joy, the absolute resoluteness of Bede is all still there. His foundation is uncracked, never broken.  In our depleted state I feel less and less like I am able to do any of that justice with my words.


Bede’s favourite activities at the moment are wrestling/eating Dad and getting tickles and playful kisses from Mum.


Since I started writing this blog Bede has been readmitted to hospital with internal bleeding. A complication caused by one of the medications that was meant to help him find some relief, the same medication that I mentioned at the end of my last blog that we were having trouble with. His skin has become so fragile over the last few weeks that he is literally just tearing open, he is covered in rash and bloated. Yet some how he has found his way to some happiness. His agitation has lessened, his laughter is tentatively blossoming, he seems to be gaining momentum as he fights this latest set back.

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He is receiving blood transfusions and everyone is keeping a good eye on him with surgery very much on the cards.

We presented to emergency department. Once we were rushed through I was talking to the senior doctor. I was listening to myself answer all her questions and hearing myself say that apart from the screaming, the tearing open, the head hitting, the needing to be held 20 hours a day and now the internal bleeding he’s fine. “apart from all that he’s fine”

I hear myself reassuring those that love him “apart from that he is good.”

I hear myself talking to bede’s teams “apart from that he’s actually doing ok”

But it’s not is it. There is no universe where any of this is fine or good or ok no matter how many caveats you apply.

As I see the bags form under Gus’s eyes, his sleeping patterns disturbed, him shakily and quietly asking about the things I can’t stop him seeing and him trying his hardest to hold it together while Bede is readmitted only a few short weeks after a 10 week admission I know it’s not ok for him either.

Slowly but surely my faith is eroded. My faith that whatever is best for Bede is what will eventuate, my faith that one way or another somehow it will be alright, my faith that as long as our decisions were made selflessly with love and Bede’s well being at heart they were the right ones, my faith that we are strong enough to do this, my faith that we could nurture Gus enough, that we could all hold on tight enough, that eventually there would be some relief, my faith in our ability to make this ok for Bede. My faith is diminishing. We are left tired and lost and diminished and so worried. We’re drowning in every aspect of our lives.

I hope as the parents of two amazing boys we can find some more of the strength they embody but we are struggling.

As we hold Bede through his distress and in hushed tones speak the unbearable words that this is no quality of life for our boy. We try and find faith, we try and hold on. Bede smiles.

This is not the kind of post we want to share, or have you read or even write but this is the truth. Bede’s truth, our family’s truth.

This is the closest to broken that we’ve ever been but apart from that it’s ok.