Brain Cancer

This blog post was written in April of this year at a time when our family was under a lot of external pressures and Bede was not in as good a place as he is now. He was incredibly ill. A couple of people repeatedly expressed to my husband that all cancer is the same and that night I wrote this blog. When I chose not to post it I almost stopped blogging. I’m posting this now in hope of undoing my writer’s block so I can start to communicate the joy of Bede again. This blog has always sought to be honest, our positivity and our happiness is honest. A number of people involved with brain cancer, including other brain cancer mothers,  have asked me to post the blog as they feel it is an honest representation. So here goes….

 

 

Let me tell you something, it is not a gentle drifting.
It is not a slow but gentle decline. It is not an all encompassing nausea.
It is an all out assault. It is brutality in its purest form. It is invasive.

It takes your inner core and torments it.
Hours of distress and constant uncontrollable movement.
Vomiting even when the tube surpasses his stomach so there are no contents just painfully retching up pure bile for hours at a time.

Repeated spells of lifelessness.
Seizures.
Brain irritiation that just results in constant screaming.
Losses of oxygen.
For some loss of sight, loss of hearing, loss of ability to control your own bowel or empty your bladder or walk or swallow or talk and Im not just talking end stage here. I am talking this is life. This is where the hope is lingering.

Bede’s bones are breaking, his gut is breaking down, his brain is irritated, his vertebrae is collapsing in on itself and both his knees are fractured.
He is not able to communicate what is wrong.
Sometimes I don’t sleep for 30 hours at a time while I try and soothe his symptoms. This is mentally, emotionally and physically the hardest test of endurance I have ever met.
None of this stops when the chemo does. When the chemo stops all of this hits it’s stride.

 

There is death. Sitting in the room with death and wondering if this week, this day, as I press the red emergency bell, if this moment is his death. Not fighting, not resisting, wondering. That is repeated frequently and that is exhausting.

 

People say they can not imagine losing a child. Well imagine having that happen repeatedly in the space of a week. Watching their body go lifeless. Watching their numbers drop on the monitor. Feeling the adrenalin surge through you. Trying to keep your voice steady as you reassure him hoping to reach him on some level.
Trembling as the doctors explain what is happening and this is still our best and only option.

Let me tell you something else at no point do you get used to your child dying. Each time his body goes limp and lifeless, each time the doctors mistakenly tell you he is end stage and it could be any time, each time he has a seizure that can not be controlled, each time is just as traumatic as the first.

It doesn’t matter how at peace you are with his death, how comfortable you have become in it’s presence, how many times you have given him your blessing to go each time it winds you, each time I sob. One of the most recent times I was alone. My husband was not at the hospital, he had been on speaker phone for the news but when the conversation stops, the practical discussion ends I am reduced to guttural weeping. Clinging to my son’s doctor as though that could change anything.

There is horror here. There is blackness and desolation.

You sit there and you tell us all cancer is equal, its all the same. That we shouldn’t need to support each other quite so much.

If all cancer is equal why do I long for a different cancer for my son.
Why is there not even the hope of cure for my son?
Why when I tell the nurses and the doctors what you say do they shake their heads in disbelief?
Why has my son spent the majority of the last 5 weeks sedated?
Why is it even improvement in the tumour robs him of his autonomy?

When you say that all cancer is the same you deny his brilliance. Because this is black and this bleak and this is hard but he is soft and he is light and he is hope and he smiles when I know you or I would never, could never, have the strength of character to.

So all of the light and positivity and happiness I have always blogged about is true. the miracle is that his light is not diminished by the darkness, he radiates through it. Shining and glistening and laughing and exploring his way through life.

This is harder than you have the ability to imagine.
Bede’s is a story of triumph but triumph does not come without a cost and when you deny his reality you deny his brilliance and I will not sit idly by while you do that.

I will not sit idly by while you diminish the brutality and the relentless reality of childhood brain cancer. I will not allow our focus on positivity and light and love to enable your misconceptions.
So here I am correcting you in the name of Imzadi and *Luca and Harvey  and *Ben whose deaths were slow and painful and prolonged and unimaginable and who fought with cheek, valiance, love and grace respectively.
In the name of Bede and & Blake who fight the incredible fight with smiles and songs and love and joy.

Brain cancer is not better or worse. It is different, it is more hopeless and the demands it places on patients and families are in a league of their own.
Bede may be small but you better believe he is mighty.


Note:

* some names have been changed to respect the privacy of the deceased.

Sadly Blake has passed away since this post was first written.

This blog is not intended to diminish the sadness, real deep difficulty, pain of other cancers. This blog is a reflection of my experience of pediatric brain cancer and my observations after spending a year on the peadiatric oncology ward. One of my dearest friends in the world lost her beautiful precious daughter to leukemia recently. I am not seeking to diminish the tragedy of other cancers.
I am saying the dance to the grave is different and I am hoping to seek understanding of that.

If your into it. Please take the time to follow the blog. Then the next time Bede needs some positivity and hope behind him we can call on you to send a dose his way.

Dear Gus, thank you for your nurturing cooling shade.

For some reason whenever I see this photo I imagine the two of you at a festival in 18 years time.

For some reason whenever I see this photo I imagine the two of you at a festival in 18 years time.

Dear Gus,

I am writing this now because I imagine one day you will go looking for this blog and you will survey a small but defining part of your family’s history through it’s words.

The fabric of our family is woven with love and friendship. In so many ways we all chose each other and what we would become to one another.

When you look back at this time I hope you remember it with the fierce love that has come to define it but I know you may not. I know that teenagers can have angst. I know that hindsight can create imagined regret, manufactured guilt and should that happen for you I don’t want my words to seem retrospectively comforting for the sake of comfort.

I am writing this to you today so you can undoubtedly know the truth. The truth of this moment as it was lived; repeatedly.

You have been the best brother we could have ever imagined for our Bede and when we tell you that you always remind us that he is the best brother you could have ever asked for. You tell him how awesome he is everyday.

You wrap him in love and hope and pure unmitigated acceptance. You fill his days with laughter, sincere chats, playfulness and you educate us all on how to settle him. You tell me about how your hearts talk to each other.

When Bede is crying in the mornings I put him into your bed and even if you are cranky at being woken up for school you never show it. You snuggle into him. He snuggles in to you and he smiles. You bounce him in the crook of your arm.
You are Bede’s safe place. You are his happy place. He has a gentle ease with you. You couldn’t possibly be more than you are to him because to him you are everything.

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I want you to know at 7 years old you were scared to tell me you were hoping Bede would die. You couldn’t bare to see him suffer, you weren’t sure how much longer we could go on. It was a particularly difficult time in Bede’s treatment and you were not alone in those thoughts.

In that moment my heart broke that my beautiful Gussy that I had held so tenderly for so many years had to grapple with compassionately hoping his brother would die, a concept far to adult for my little boy. But as my heart broke my pride for you put all the pieces back together. I was in awe of your love, your empathy, your depth of reflection. Never feel guilt for this you have loved him purely and unselfishly.

I am not sure if you have ever felt a moment’s resentment for your brother. If you have you haven’t shown it and he has certainly never known it. You make allowances and cancel plans with a happy and understanding coolness.

There has never been a moment you haven’t hoped for what was best for your brother.

I remember you telling me that you didn’t see a down side to Bede not getting better and I said “well darling I explained to you the down side is that Bede will die”. Your reply has become one of our classic family tales. You said

“well that is all about us mum and this is actually about Bede. If he dies he will go to heaven and be with Molly Gran and Poppa and if he lives he gets to stay here and know our love”

You have given your brother the greatest gift in the world. You have made cancer irrelevant. When he is with you you are his big brother, he is your baby bro and he gets to be all he was meant to be and all that he is. He gets to play.

The medical team aren’t sure how good Bede’s eye sight is right now but when you walk into a room he seeks you out. He is drawn to you. He loves you happily, tenderly, with the awe of a little brother and soaks up whatever you are happy to teach him.

He uses his little arms to pull your face into his own and hug and kiss you. He gets to be a playful little boy with you and as I type this you are both lying on the living room floor laughing.

Your light fills every crevice. Bede’s light is no accident it is clearly a familial trait amongst brothers. You have led by example.

Your matter of factness, your groundedness and your ability to simultaneously hold defiant faith fuelled hope and the grim reality at the same time is truly humbling. Most adults I have encountered cannot do that.

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People have told me and one day they may tell you that this has been the making of you. Do not listen to them son. How wrong they are.
You were born the most compassionate, loving, tender, affectionate, empathetic, clever, dry, funny, joyful, thoughtful little boy. This has not made you, or defined you. You have always been your own incredible person.

It can only be an act by the grace of God that Bede got to have you, he got to grow with you in your nurturing, cooling shade.

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How much love can a bear bare.

I have grown up with you. Being your mother grew me. I so often wish I could spare you from the pain ahead, from the sorrow. I wish I could protect you but in some round about way I hope our positivity, our love and the happiness we find in one another will help us all.

If I could offer future you any comfort it would be that you make him happiest. He is at home with you. He has truly lived because he got to have you.
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This post is to future you but if I had to think about present you I’d say:

I know that sometimes I am hard on you but I want you to continue to grow into the remarkable young man you are set to become and part of that is respect and discipline.

I know that sometimes I am soft on you and I spoil you but I want you to continue to grow into the remarkable young man you are set to become and part of that is embracing you gently with tender easiness and protecting from the bruises.

If I had to make present you a promise I’d say:
I will continue to try to live up to the gift of being your mother (and I promise to beat you in every water fight this summer).

You were my first love. You are my whole world. You are my sunshine, my only sunshine. Your wit, intelligence, faith, affection and hope sustain our family. You are our anchor. Your Daddy and I love you so very much Gussy. You are doing brilliantly.

Thank you darling.

Clap along if you feel like happiness is the truth….

GOOD NEWS AHEAD:

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We’ve been busy living.
We’ve had beautiful Bede’s first easter at home but it was his second easter. We are well and truly in the year of seconds now!

We’ve been home which has been challenging and care intensive but also fortifying.
We’ve been on picnics in parks and lakes and little monastic country towns. We’ve been for bush walks and BBQs and to the farmers markets. We’ve sat in the fresh air and sunshine and we’ve even dragged Bede along to a wine tasting. We’ve had baths and cuddles and snuggles and kisses. We’ve been enjoying the day to day of family life and all during the school holidays so Gus has been around with us.

Most of all we’ve been delighting in our little boy’s spirit. He has the funniest comic timing and his laugh is irrepressible. He will be sleeping and just wake up bubbling over with laughter, watching a movie, in the middle of a conversation, while he’s lying on his play mat alone. His laughter and smiles and light fill the air.
So here’s what getting home and being home have sort of looked like….

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Bede’s 15 month birthday…I’m always pinching myself reminding myself that I sat in ICU begging for months not weeks and here we are! living it.

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Sometimes its hard to find the baby amidst the medical but then there his soul is reliant and dazzling

Sometimes its hard to find the baby amidst the medical but then his soulfulness is always there.

Mates chilling, waiting for MRI

Mates chilling, waiting for MRI

So confident, bede was so strong and happy going into surgery.

So confident, bede was so strong and happy going into surgery.

just chilling

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Following his brain shunt reinsertion. This whole process can be brutal and yet Bede retains his tenderness. he is not hardened, he retains his gentle strength

Bede's favourite place in the world is the shower even at the hospital.

Bede’s favourite place in the world is the shower even at the hospital.

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Bede’s osteopenic now as a result of his treatment. A full body scan showed two fractured legs and a collapsed vertebrae

 

heading into mri

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This picture shows bede exactly as he is.

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this photo is Bede to a tee.

matching easter pyjamas

matching easter pyjamas

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worlds most photographed baby

world’s most photographed baby

chilling by the lake

chilling by the lake

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brothers

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picnic laughs at the park

His joy is whole and pure. He is resettling finding his feet and once again reclaiming his peace. His light shimmers.

Physically he has been temporarily diminished but he is still whole.

He babbles. He says “hi”. He reaches out for hugs and pulls us in until he’s had enough and then pushes us away. Although his illness and his treatment have delayed his development he is so purposeful now.
Most of all he smiles and laughs and glistens with wonder.

We are happy.
Bede has been readmitted once again on the verge of his bowel perforating but thanks to the team we caught it early and he has beat it back and is doing well. The experimental treatment he has been on has involved high flow oxygen which really agitates him but everytime he manages to pull the prongs out of his nose he laughs and delights in his own determination.

That is a determination that has served him well.

A little over a year ago the Bede Update was not yet a blog and was being delivered to around 60 people in the form of a text message. A little over a year ago I sent this text out:

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I asked for your positive thoughts for a day and I had no idea I would still be here clothed in gratitude and the deepest humility after a year of support, love, prayers, sunshine and good vibrations or that all of that would now be coming from so many of you.

You have not given into apathy, you have lifted us up and my gosh we are thankful.

So here, almost by way of thanks, is the big MRI news.
The MRI results are in and 5 months after chemo finished the primary tumour is still shrinking significantly month to month. It is not just the necrotized cystic matter but also the solid tumour matter significantly shrinking. This is phenomenal, unexpected, incredible. Miraculous.Our doctor has never seen this before.
We were only meant to be able to achieve 20% shrinkage. We are now so far beyond that.

o the left is Bede;s tumour May 2013 and to the right April 2014. The white specks on his brain stem that used to keep his neck crooked to one side are completely gone.

To the left is Bede’s tumour May 2013 and to the right April 2014. The white specks on his brain stem that for a while kept his neck crooked to one side are completely gone.

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Bede’s face as his main doctor told us the news.

We are happy and proud and reassured and validated and just overwhelmingly happy. We have fought hard and he has fought with us and we are finally winning. We are holding on tight to each other and we are so happy.

after hearing the news we went out and had a tequila almost a year since we went and had one tequila to celebrate finding out we would have more than weeks.

after hearing the news i must confess we had a celebratory tequila before getting back to work.

Bede is defying. He is cancer conquering. He is living life on his terms. He is calmly and purposefully setting the rules.

The doctors of course still say Bede is terminal and won’t give us a timeframe but slowly, daringly, maybe naively, wild brash hope starts to creep in. Hope for time, hope for life, hope that we can continue to enjoy his company for a little longer.

It’s not an easy fight. But it is one that Bede fights with peaceful loving resistance. He is the embodiment of so much love and devotion. It’s time we all start getting used to the fact he may be sticking around for a while.

Trying to write a thank you to all of you, the members of team bede,  I imagined you all standing in front of me and this is what I would say to each of you…

You have helped me carry my child, you have stilled my hands when they were shaking, you have strengthened me when I faltered and when I was too scared to be positive or scared that my positivity alone was not enough you helped carry a mother’s load. You have held Bede as I have held Bede. Your love has grazed his forehead like the gentlest kiss. When our family faced fear, darkness and despair it was your arms we felt around us.
Apparently miracles do happen, Bede’s life is a miracle and from the bottom of my heart I believe it is you who are helping deliver it. So as I type this through tears of gratitude thank you does not seem enough but thank you and Bede’s life lived so beautifully is all I have to offer.

I hope you will all continue a long this journey with us, carrying him on this wave of good intent,  delivering the miracles that love and prayers and positivity have helped deliver

Thank you.

 

He may be small but he is mighty.

 

 

Note:

Last post I said I would update you on all the ups and downs of the last few months but I think its time to let all that go. We sat there with death by our side and predictably Bede stared it down. It was taxing and difficult. For Bede, and indeed all of us, it was brutal. We were in some of the worst places we have ever been. But that is done and now here we are bathing in his light and love and happiness. In this moment tired resilient happiness is our truth.

 

 

 

 

 

 

 

 

 

Bright blessed days and dark sacred nights.

This will be one of my longest blogs. A lot has happened in a short period of time and I am too tired to make this post beautiful, too tired to make it appealing, too tired to cull the boring bits. This is what it is. Bede’s truth.

The last week started with an ambulance ride and ended with so many of us praying. Here’s what happened.

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After arriving at the hospital on Monday Bede started to deteriorate on Tuesday night and we started to worry that we were losing Bede.

He was fighting a winnable battle but he was exhausted and he was coming from behind. He was more tired than we had ever seen him and just breathing was hard work. For the first time ever he was finding it difficult to shine through and that was devastating.

I sent a message to our family and friends recruiting love and positivity but even as I sent it I knew one part wasn’t true. “there must be more to come”. I realised he had filled us up, his light has shone bright and he has been more than enough for our family. That scared me even more. Perhaps it was time.

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My gut told me it was line ball and we were in trouble. The doctors agreed it wasn’t good and we may lose him. Bede fought valiantly but I was losing my boy.

Come Wednesday afternoon I asked for a moment alone with Bede. I whispered in his ear that I loved him. I sat by his cot holding his hand and told him the truth. I told him he is magnificent and that he had exceeded all expectation. I told him he had made me happier and given me more than I could have ever asked or hoped for. I told him he had done enough now and if he was tired and if he wanted to go that was ok, he could. He had given us more than I could have ever hoped and if he chose to stay around for a while it could be our turn to give back to him but whatever he chose was ok.

He was exhausted.

ICU came and gave him more supportive measures. My incredible husband Roy describes it as “he was standing on the edge of the cliff but not looking down”. We were maxed out. Any more support meant we would have to be transferred off the ward to ICU; he would need to be anaesthetized and ventilated. We needed to consider what our wishes were for Bede. Our primary doctor one of Bede’s biggest advocates said that should the time come we ventilate. For now we fight and that made sense because he was still fighting to. She acknowledged we were in a bad place but told me she still had faith in him. We both decided it was time to get Gus in to see Bede just in case. Gus brought unconditional healing love into the room and sat by Bede as I held him and Gus read to him for a while. Then overnight what has become almost the ordinary happened. Bede put his head down and one foot in front of the other and he worked. Slowly but surely he reclaimed himself. He shined again.

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We had about  24 hours of peace. Bede remained maxed out but we suspected he was able to progress and were just giving him a chance to rest. Then it all turned again.

Bede’s body writhed and thrashed uncontrollably. He screamed in distress.

We kept pumping him full of an array of IV drugs to try and stop it but nothing worked. ICU came down and spoke to us about the possibility of anaesthetizing him and ventilating him until hopefully this episode passed. We were now losing him again but in a completely different way.

The on call consultant who knows Bede well talked to me on the phone at 4am. He said it was time to stop the drugs, they weren’t working. There was nothing we could do to make him comfortable. It was time for us to just hold him through it. That was the hardest thing I have ever done and late that sleepless night I wrote this:

I have always said Bede’s resistance to cancer was much like a peaceful protest, his gentle strength forging the way.
Tonight it’s all out war. It is violent. He is in the trenches. He is fighting a messy, dirty battle and he is doing it with grit and determination.

It almost reminds me of a shark feeding frenzy. The waters obscured by the movement, frantic, fast. His limbs are flailing his back arching, he’s cycling through uncontrollable movement and agitation before managing to ground himself for just a moment before the next round. It is unrelenting.
I’ve never liked the word fighter for Bede, I’ve always found it too abrasive for his gentle soul but tonight he is fighting for his peace, for his light, for his life. Refusing to be taken easily, refusing to leave his big brother just yet, refusing to be robbed of what he has rightfully earnt – some time off treatment by the beach enjoying life.

It was pretty accepted that Bede wasn’t aware of us at that point but I refused to believe I couldn’t reach my baby on some level. I spent the night trying to pour love into him so in the midst of his despair he wouldn’t feel alone. It took every ounce of my being to smile as I sung “this little light of mine” my voice shook and my mouth trembled but I smiled and I sung and I tried to fill him with positivity and love and so did his daddy. I think we all found out just how hard we can fight that night.

imageEven in the depths of his despair, as he thrashed and wailed, he paused. He became Bede. He looked at me and he smiled, his light shining brilliantly, dazzling until seconds later he succumbed again. He took a moment to remind us just how hard he can fight, to remind us it takes a bit more than this kind of horror to keep him down. As he thrashed his light was dimmed but unassailable he glowed. His gentle loving soul fortifying us reminding us to be peaceful be patient.

On Friday morning after 12 brutal hours neurology saw us. It wasn’t seizures. He was aware of us he just couldn’t show us that. The movements were coming from a different part of the brain and were not sure why it’s happening. Finally early yesterday afternoon we got it under control. A lot of those measures have a sedative effect so he is catching up on his rest.

Now he sleeps. His vital signs, his heart rate, his oxygen, his respiratory rate are all good. We have managed to do a miniscule reduction in the support from ICU, it is a reduction nonetheless and soon we will start him on a tiny feed of 5 mls an hour. It will be the first time his body has had food since early Monday morning.

Today he gently tip toed his fingers across my own, he smiled gently but purposefully. He is resilient.

Last night Bede’s aunt came and played the guitar and serenaded him. Her chords permeated his upset and he relaxed. She played all his favourite songs and created a few new favourites. She helped me help him resist drifting back into despair and helped us give him some sweetness.

If we didn’t know already over the last few days we have found out what our son is made of.

Bede is weakened but he is not diminished, his strength incontestable, his light indelible. His soul glistens with hope and love and beauty and light and joy. He is a blessing in its purest form.

The fight is hard but he is soft. He is tender and he is warm. The fight is robust and he is delicate.

Although it is not perfectly apt it reminds me of a quote that I came across some time ago.

 Returning violence for violence multiplies violence, 
adding deeper darkness to a night already devoid of stars. 
Darkness cannot drive out darkness: 
only light can do that. 
Hate cannot drive out hate: only love can do that.

So yes the fight is hard, the cancer is dark and Bede is soft and glowing and tender and I feel like that is just what he needs to be. It is not fair and it is not right and this did not “happen for a reason”. It stinks but if there were ever a baby up to the challenge you better believe it is Bede. His soft beautiful love, his gentle soul, his resilient tenderness and his purposeful persistence have him in with a fighting chance and for this fight I’m backing Bede. Cancer ain’t seen nothing yet.

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I want to add a thanks to all the nurses who have surrounded him and us with genuine care this admission and who have prayed for him. Who have made us feel like Bede matters and is valued even in this environment that he is more than just a number on the ward that he is cared for. I want to thank everyone who has sent him love and positivity this past week. From virtual strangers to our nearest and dearest thank you. Your love strengthens him and us and enables him to work his magic.

Bede has been remarkable.

If he chooses to go it is ok. He has done enough and I have tried to be enough. Mothering him has been a privilege. I have tried to empower him to make his mark through this blog and through all of you. If he chooses to stay that would be a dream but if he chooses to go I hope you will help me to wrap him up in love and tenderness and light and joy and soulful kindness. In the meantime, while we wait, I hope you will help me fortify him with love and positivity as his light has so often fortified me for the fight.

As I nuzzle my head against his own I am at home in the world and I count my blessings.

(I did a photo post earlier today showing some of the last 6 weeks including our happier times and times of growth and joy. you can check it out here)

Oh Happy Day!

My cup is full. I am brimming with joy and happiness and thankfulness. A smile irrepressibly spreads from one corner of my mouth to the next. Life is grand and beautiful and saturated with colour and light.

Bede turned 6 months old on the 2nd and we celebrated. We celebrated with balloons and colours and cake and love.6 month cake

 6 months with mum 6 month with daddy

Time is a funny, elastic thing. If you asked me if I have had long with G who is 7 years I would say not at all, he is still a baby. But this week when I think of Bede I feel like 6 months is a long time. It feels like a miracle. I have truly loved and fully lived each of those days and fully immersed myself in the experience of Bede’s life. Being Bede’s mum has been all encompassing. I have held him for hours every day and made sure he has felt loved and nurtured and safe. My love for him is embossed on every cell of my being.

6 month old Bede isn’t too much different to the one month old Bede. He is calm, resolute, substantial, joyful, curious and happy. He shines. He seeps beauty and grace and oh so much light. even when he can not phsyically mould his mouth into a smile you can see the light and happiness pouring from his eyes. The main difference is now we know just how much he is capable of. He is capable of more than simply enduring. He is capable of growing and evolving through the most daunting and trying circumstances.

Bede has really taught me a lot about unconditional happiness. I mean it when I say there are times when he can not physically smile but he is happy. His happiness is not pre determined by his conditions, it is not ruled by externalities. He cultivates it from deep within. Like a kaleidoscope his happiness is the reflection of so many things , his family, his toys, a world to explore even if it can not be as vast as yours or mine, his curiosity, his disposition. At times I find myself walking down a corridor on the children’s cancer ward smiling and I feel what Bede feels, unconditional happiness that is not dependant on my environment or material things or anything and I know Bede has taught me a lot.

Bede was so sleepy but so happy to be in the fresh air, tasting ice cream and experiencing his parent's joy at having him outside

Bede was so sleepy but so happy to be in the fresh air, tasting ice cream and experiencing his parent’s joy at having him outside.

Other than Bede’s 6 month celebration there has been a lot of other bits of happiness floating around. Last weekend we got home for about 8 hours. The ward also had a BBQ and Bede wore a party hat. We broke all the rules and snuck some ice cream into his mouth.
He has started mouthing at things a lot and we are so excited to start feeding him food soon. I have never taken food granted and can not wait to share with Bede the adventure of taste, such an essential party of experiencing this world of ours.

Roy is obviously so proud of his little baby boy as he watches Bede commandeer his rusk. He seems excited and hopeful and happy and just really really proud.

The truth of course is there is always a balance. This post sounds boldly happy and things are but at the same time there are still moments, quiet moments, even sad moments. There is always a choice to be had. There are moments where you think that 6 months old means we’re already a quarter of the way through Bede’s life expectancy. We choose to focus on the moments where we just feel blessed to have had him this long.

At the moment he is bold and curious and an explorer. Most of all he is adored and rightly so. Well actually in this moment by the time this blog finally goes to air he will probably be asleep and we MAY have even got home! Fingers crossed. Love to you all.
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This is where all the cool kids hang out, sharing the love.

WOW! What an incredible few days.
My greatest fear, that our stoic, warm, solid, peaceful, smiling Bede would all too easily fade into nothingness, is slowly, person by person, facebook share by facebook share, being alleviated.

The blog has taken off. Everyone from Joel Madden to Kevin Rudd, Liverpool player Brad Jones to Chrissie Swan and so many more have tweeted support for Bede and I’m not even on twitter. All our facebook friends, the people in our atmosphere, have been reading about Bede. I can’t adequately express my deep thankfulness. It is such a gift you all give me as a mother to know my son was here, you noticed, he matters and that despite his short life he is getting his opportunity to make his mark on this old world.

We had Bede baptized on Saturday and as I walked around the corner to the church I was overwhelmed by all the people standing out the front ready to offer Bede and our family, their love and support.  Such a joyous milestone, marked with a front lawn party, gifts, good friends, champagne, kids running around, just a total celebration of Bede and his joy.
baptism church baptism church candles

The days have also been marred with some difficulties. Bede is momentarily, worn and wearied. For the first time in his life he cries with discontentment. He’s had a rough couple of days, with the new tumours have come more pain and so we have been working hard at  getting his pain management plan right. I think we are getting on top of it now.

Bede in my arms blog

Today we decided to up his treatment to the hard core chemo. It’s a difficult decision. For a while most of our time will be spent at the hospital which will be difficult for Bede and for Gus. We were at the stage where the doctors would have allowed us to just make him comfortable if we had pushed for that. But for now he is full of life and vigor and a grounded determinedness. He’s still smiling.

At the beginning of all this we promised ourselves and our families and Bede that we would fight like no one has ever fought before. We also said that when the time came we were the right people to honour his truth, his life experience and fill his life with sweetness, comfort and light just as he has filled ours. We’re not there yet and the doctors agree. He surely is tired though.

In the hospital for a short visit on Sunday, I watched as his limbs just melted exhaustedly into Roy’s arms. He took a moment, searching within himself for the energy and started producing glorious smiles. His light shining relentlessly, determinedly, refusing to be obscured.

There is an exhausted joy. A lopsided happiness. Until now Bede has just simply continued on despite his illness. I really see for the first time this illness taking its toll on Bede’s soul. I also see, Bede digging in his heels and fighting. Refusing to be robbed of his gentle peace. Its not an angry fight or battle but a peaceful protest. He is shaken but he is undeterred. He is calm and beautiful and warm and his light glows and lights up all those around him. He is powerful and gentle. He is peaceful and strong.
In this, some of his most difficult moments yet he is showing his metal and I am in awe of his strength and his grace.