joy! oh joy! oh joy! She’s here!

Well I’ve had a bit of a break from the blog.

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These photos were taken when Cress was just one or two weeks old. Roy and I especially love this one it seems to capture how there is always something going on.

Mainly because my hands are literally full more often than not. So even when it’s possible to think it’s impossible to type.

In fact most days I draft a blog in my head but the further it goes between posts the more overwhelming the job of catching up becomes.
Most people that meet us comment “wow you’re hands are so full!” and I reply with pride “not as full as our hearts”.

For now I want to share Bede’s biggest news, our greatest joy, the reason we’ve been so busy. cress blog3 Our beautiful Bede has become a big brother and our family has grown into itself. cress blog Our beautiful unexpected blessing has arrived and put light to any darkness. I remember praying Bede would remain with us long enough to meet his sister and now here they both are babbling away to one another… reaching out to meet one another… loving one another as easily and as instantly as only siblings can. We are consumed by the colourful, loving, chaos of family life.DF_145 Bede is a loving brother, he learns from the best. Gus remains a shining star and a beautiful example of how to be a wonderful big brother. At times Bede is even instinctually gentle with his sister. Anyone who knows Bede and his brand of enthusiastic, excited movement will now how incredible this is. DF_141I still remember the moment Roy lifted our daughter onto my chest for the first time. The air was thick with love, joy, happiness and I was completely overcome with the deep gratitude. Even then I was underestimating just how happy we would be.
We delight in her everything, the way her hair stands on end, the sparkle in her eye, even her burps. Cress doesn’t smile, she grins. She has completely captured us.

Cressida Joy Margaret arrived in April and has been reinventing our world ever since. cress blog 2 cress blog1

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.

 

Tada! Bede’s back.

I can’t really put into words my optimism right now.

tada.... i'm back!

tada…. i’m back!

Bede has been out of PICU for a little while but there was the strong chance he would have to go back especially as we were finding it difficult to maintain IV access. While that chance was there and still so strong we didn’t want to jinx it too much. Now that is looking less and less likely.

laughing after an ICU doctor said he probably wouldn’t make it

 

I have a lot of updating to do and I will. There is still so much big positive happy news to deliver! We need to fill you in after you all so happily ‘held this space‘ and to give you the results of our last MRI scan when we all wished for whatever was best for Bede.

For now Bede seems to have made such a strong comeback. With the incidental adjustment of some meds he is the most himself he has been in months. He laughs freely and happily and it’s glorious.

Our happy little bumble Bede

Our happy little bumble Bede

We know he’s not out of the woods yet, we know his recovery is slow almost too slow but his soul, his spirit, is strong.

We will CT his lungs on Monday and hope there is nothing unexpected or too bad there.

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Hope is tangible and although Bede is still on oxygen he is nearly crawling!

Slowly but surely we are making ground.

I feel positive, optimistic, uplifted and happy all his teams are communicating with each other and us.

 

Gus has made his high flow oxygen tubing his teething toy.

Bede has made his high flow oxygen tubing his teething toy.

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this is too much happy for 3am!

 

So the big update is being drafted as we speak…. Get excited Team Bede, get excited.

For now I just wanted to share these pictures and let you know that once again your love and prayers and positivity have helped carry him through a storm that some thought he could not weather. Our last post received hundreds of Facebook shares, thousands of visitors and views from dozens of countries. We are so deeply humbled and thankful that so many of you are getting behind Bede. We truly believe it is making a difference in his life.

 

 

This Kid!

 


Bede is small but he is mighty.

This is Bede after all.

 

 

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Our boy smiley

Bede’s been in PICU fighting for two days now. They think we could lose him.

He of course has other ideas. He is fighting with a smile.

He may be small but he is mighty and his brand of resilient happiness is not done yet.

Brothers

We have prayed and loved and hoped ourselves into physical and emotional exhaustion. Bede was heading into a period of intense rehab and moving beyond his tumour into life. We are devastated all this potential for a happy life could be snatched from him when he is so close to it.

A massive thanks from Roy and I to everyone who has sent love, prayers and red bull.

Bede and his dad

I am too exhausted to convey how much this light filled child and his determination to stay with us means to us. In this moment there are no words just profound love and faith. We are proud beyond belief and hopeful beyond reason.

As one doctor who knows Bede well said… “He’ll come back. This is Bede after all”

 

Hold this space

We have so much to share with you all. As soon as we have had enough time to sit with all the different pieces news and process them ourselves, as a family, I promise you we will.
As soon as I feel like I can adequately convey the light and shade of it all I will.

In the meantime I wouldn’t get too invested in any of the third hand whisperings that are doing the rounds and I can’t  let them rush us.

We have some more big positive posts coming up and we can’t wait to share them with you.

For now here is Bede.

imageHis agitation has passed. He can’t tolerate any feed at the moment and has been losing weight. He ended up needing a general anaesthetic just to get a drip in so we could hydrate him and yet he does not falter.

Bede is irrepressible, unstoppable.
He is nearly crawling and always laughing.

He is growing and developing.

He is hope.
He is light.
He is shining.
Busy embracing life and rolling around after his brother or the dog. He is enjoying himself.
I can’t help but smile as I type this just thinking of him at the moment is such a delight. He is so happy and cheeky and fun.

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Thank you for your patience, for standing with us. Thank you for your love.

We are both so grateful

I promise the updates will come soon.

 

Issy and Roy

Whatever is best for Bede

imageWe’re home!

Our trip gave us hope and despair, peace and then lost peace and solace.

We will update on the trip when we have had a little more time to process and the official written opinions arrive. Unfortunately Bede was very unwell for the majority of the trip but was visibly relieved to be home with familiar voices and all his creature comforts.

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It was very important to Gus that this photo of Bede laughing was included in this post.

For now his little soul is fighting his intruding agitation. His light rises up, unrelenting and unwilling to be quashed. He struggles to find his place of comfort but then he does and he laughs as deeply as he is whole. His sense of humour is intact, his cheekiness unscathed.

This morning as I type this his light is sparkling… all out shining and he is laughing

Today is MRI day and with both hope and fear in the air I thought I’d ask all of you, Team Bede,  to join us in hoping or praying that whatever is best for Bede is what will eventuate. Unselfishly, unreservedly, without any request more specific than that. Just whatever is best for Bede.

Have you got a little love to spare today? Let’s wrap him up in it.

Thank you all so much.

Bede’s tumour is growing.

As I write this it’s late. Roy’s been doing the heavy lifting with nights lately but tonight I am alone. Waiting to give the midnight meds and hoping he drifts off soon.
We have been buying time. Buying time to process our reality, buying time to let Gus sort out everything he has going on at school, buying time while we figure out what we want to do.

But there is no time to be bought and I am sick and tired of half sentences, half answers. Not lying but not disclosing. Holding our secret close when we all know a problem shared is a problem lightened.

Three weeks ago we posted about Bede’s MRI and received the results pretty quickly. Since then we have wrapped ourselves up in the love and comfort of our closest friends and family.
We have had twice weekly meetings with Bede’s primary doctor.

We have tried to keep on swimming while the difficult wave filled nights have threatened to drown us in exhaustion and in our own thoughts.

Bede’s tumour is growing.
The cancer is overcoming the chemotherapy and the tumour is breathing new life, focused on robbing Bede of his. For now, both astoundingly and predictably, it fails.

Bede is here living and laughing, lighting and loving and it looks a little something like this…

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He lights the way and I am so happy to just bathe in that shine and follow his lead. His inner joy, his uncompromising happiness and resilient love glisten through the troubles like jewels.

 

We also have two trips to Sydney coming up to see different doctors. We have people in the US and the UK looking at Bede’s scans. Surgeons, oncologists, radiation oncologists. We are having renewed discussions with our team of doctors in Perth.

We hope to go forward with balanced judgment with an aim to prolong sweet life for Bede but never at his own expense. As our little miracle man keeps on keeping on.

Your prayers, your hope, your love are always humbly received.
I know I have said it before but the miracle Bede has had and continues to need is all of you. We hope you will continue to buoy him with your good will.
If love, hope, prayers, faith, positivity and joy don’t shrink this tumour it won’t be for lack of trying. Please continue to get behind Bede.

The tumour is growing.
Bede is small, Bede is mighty and we are so very thankful.

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

picnic

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.

 

 

 

 

 

 

 

 

 

Understated Magnificence

I am not sure if I have been doing Bede justice. If I have been able to find the right words. Though I suspect I could search for a lifetime and there would be no words glorious enough to befit him.

You know the blog is a funny beast in some ways. Early on I would pour my heart in to it, my child was laying next to me dying, the emotion was close for the recall. At times I have felt tethered. I have recruited so many of you to back Bede and I so desperately want to bring him to the world and hold him up as a shining example and say this is beauty and joy and light. Sometimes it is hard to write and I have found myself making myself write  to honour the support you have given him. Tonight I really want to write.

I want to say that right now he is rolling back and the forth on the floor grizzling but my goodness he is oozing heartbreaking, life altering, world shaking beauty.

Sometimes his eyes are subdued but they are pools of love and hope and wisdom and all the secrets of life that he has been so generously sharing with the people that will pause long enough to gaze into them.

Sometimes his voice gives life to his discontent but the shades of light and love dance within every inflection.

His fingers reach out and grasp me and his daddy, purposefully and with hurried conviction but he is gentle and thoughtful in his purpose.

When he wakes he smiles. His laugh is round and whole and sincere it shakes his core and then it tickles mine.

His head is close to bald but that lets the gentle afternoon light glide across it a little more easily.

He looks within himself as the sunsets and finds a non medicated peace. It’s not synthetic, it’s not prescribed, I have not raised him to have it, it can not be given. His peace wells bountifully from deep within him and if you’d like a piece of his peace he’ll freely, happily, lovingly give it to you.

His light fluctuates it is true but it is beautiful light and it always has depth. When he is defiantly glowing, persistently shining and all out dazzling it is captivating.

There is some how earth within him. He is grounded and has substance and light and weight and hope. They meld together within him and he overflows with the goodness of life. He is beautiful, he is truth.

He is understated magnificence. Who even knew that existed? Understated magnificence.
And yes there will be grief but that is for me and you and his daddy and his brother and all those who have known him or of him or who have been privileged to love him through real time or cyber waves. There is no grief for him.

He has lived. He brought it.
If we choose not to measure life in longevity but by life lived Bede has out done us all. He has found joy and adventure and experience and life in the big things and the tiny things. He has calmly, minimisingly, walked through horrors and let them go.
He has been ever present in every moment. I’m sure you could not say the same.

He has brought it.

So yes there will be grief but it is not his. Yes I posted a post where you could find grief but that is not ours. For Bede is here. What a gift.

A life altering, world shaking, course defining, light embodying, secret telling, profound soul is here. What a joy!

I think the reason I started to feel tethered to the blog and started posting less was because I doubted myself. I started seeing everyone calling Bede heartbreaking. If that is what you think then, and I say this with all my kindness, my heart breaks for you.

He is beautiful and though his life may be fleeting it is impressive, it is joyful, it is the greatest gift I never even knew I was worthy of until he raised me up and made me worthy.

Through all this bigness, big words, big heart, big impact – he is tiny, he is gentle, he is precious. Unwaveringly true.

None of this is cause to call our lives heart breaking. It is not cause for sad face emoticons to be given out like they are going out of fashion. It is not cause for pity. If I am honest, and I fear I may sound abrupt, if that is your take, I pity you.

I am sorry that his light isn’t falling on your face, I am sorry his profoundness isn’t having the opportunity to raise you up, I am sorry you haven’t experienced his healing tenderness. Lean in a little closer, smile a little more broadly, love a little more recklessly, rejoice a little more daringly and you will feel it to. His shine is generous and I know it is not just confined to his family.

Yes I posted earlier today. It was a call to arms of love and happiness and faith and blind hope.  Bede is here, dancing his way through life. He has a had a bad couple of days but he is dealing with it with smiles.
Tonight Bede’s love envelops me. His strength fortifies me. His light dazzles me. His tenderness heals me. His persistence encourages me.

I urge you to get behind the boy who will give you whatever you are open to taking from him. Get behind him with positivity.

Tonight the roses are in full bloom, the breeze is in and there is magic in the air. The world is more beautiful, more light, more wonderful because he is in it.
His is a life worth celebrating.

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(I posted a shorter post earlier today. To check it out and find out why we need your positivity leading up to the 8th of Jan click here.)