Our christmas star.

blog 4

Wow! What a big post I have ahead of me. Bear with us – the news is worth it!

We’ve been in such a difficult place over the last few months it’s been impossible to write but we are glad to be moving forward and happy to be updating you.

It’s also been a massive few months!
If you recall first we were told his tumour was growing and we braced to lose Bede.
Then we went to Sydney.
Then we came back and hoped for whatever was best for Bede. Well what a beautiful wish that was. I am so happy and privileged to say the tumour had not grown! The previous scan results were incorrect. The cancer was not winning.

The real magic, the delicious stuff, the hope inspiring soul shaking, world altering stuff happened in between those two scans in Sydney. It’s a long story but one we need to tell you and I can’t find a way to condense it.

In September we made our way to Sydney to see some doctors at that stage with the news Bede’s tumour had grown.

waiting to see the doctors

patiently waiting to see the doctors.

 

In between appointments we drove down to Melbourne to see my beautiful extended family and introduce them to Bede for the first and possibly last time.

 

NSW drive

IMG_3251

Bede wasn’t himself but was wrapped up in the kind of love, generosity, easy familiarity, friendship and self deprecating humour my family does so well. I have barely had a chance to breathe since being back let alone express my deep gratitude to my whole extended family for such a warm welcome.

 

uncle vin

IMG_3281

Bec I can promise you Bede only eats the people he loves the most!

IMG_3274

 

jess, kate and bede

ackland street

Gus loved Acland street even more than I did as a little girl!

 

In fact we almost skipped seeing the professor in Sydney that PMH had referred us to as we were having too much soul nourishing fun with the gang. To be honest we were convinced that being PMH’s guy that he would blindly back them up and say all the same things. We went anyway.

He defintitely did not say all the same things!

HOLD ONTO YOUR HATS PEOPLE!!!!!

hold onto your hats people....
He said he does not believe Bede’s tumour is terminal.

I’ll let that hope filled glorious sentence sink in for a moment.

blog 3

He is arguably the best peadiatric neuro oncologist in Australia and he said he does not believe Bede’s tumour is terminal. He said he has seen this before and the patients did not die.

My gosh we have never been so blown away. We sat there in that office like stunned mullets.

When the professor said I do not believe this tumour is terminal I asked him to repeat the sentence as though he was speaking another language. This has never even been a possibility for Bede and then all of a sudden it is. It was a mammoth moment.

We always knew the type of tumour Bede has can, hypothetically, reach burn out. Our doctors in Perth had always made very clear that the way Bede’s tumour behaved he would die before he reached an age when that could happen.

Well not according to the professor – he says we’re already there. That the tumour has ‘run out of petrol’. That’s why the tumour kept shrinking 6 months after chemo. That’s why it’s still stable. That’s why while the PMH doctors predicted we’d only ever achieve 20% shrinkage we have now achieved 80%!

He said he didn’t believe the last scan really did indicate growth (turns out he was right!) and that the tumour is no longer behaving aggressively. He said if this was his patient he would start focusing on nutrition, hormones, OT etc and leaving Bede as minimally disabled as possible. He said he would not let them send us home to die again.

There has been a lot to come to terms with including the worst case possibility that Bede lives but is severely disabled and what that means for all of us. There has been a lot to process. That processing has been grounded in faith, love and sharing the news with just a few of our closest friends.

The best case scenario is glorious. Bede will continue to develop and although delayed by all of this he will in his own time reach all his milestones and grow to have a fulfilling life.

As his parent’s and his advocates we have to hold this opinion along side the second opinions we have received from the UK and the US both of which say Bede’s cancer is still terminal and that that won’t change.  From the beginning we have said if you gave Bede 1% he would be the kid that made it. I think he definitely has that 1% now and we move forward with reckless hopeful abandon.

IMG_3369

blog 7

I can’t really explain it though. There is fear. Fear we will lose Bede, our shining light. Fear that an unfillable hole will be left in our hearts and family and lives. But Bede teaches and exemplifies bravery for us all. It was sometime ago that I secretly stopped believing this cancer would take him. Fear of sounding like a mother in denial stopped me from articulating it but the belief Bede was hanging around at least a little longer than expected planted like a seed in my heart and mind last November and that seed has just continued to grow.

In the last 24 hours 3 people have cried tears of joy upon seeing Bede. It’s a brash statement but I really believe he is, day by day, becoming the good news story I always believed he could.

power

All this news made heading into ICU and potentially losing him to pneumonia that targets low immune systems all the more difficult. So thank you for your love, your prayers and your hope.

IMG_3660

I want to once again thank you all. Each of you are amazing. You have not given into apathy. You have not become desensitized to the ups and downs of this journey. You have not turned your backs. You have given our son a platform to shine. To be known to the world. To have his life seen and noted. You have fortified us with your prayers and positivity and hope. I once again write this with tears of gratitude and a renewed belief that miracles happen. This year Bede is our Christmas miracle. Thank you for sharing in the joy of him.

Ill say it 100 times the miracle bede has had and continues to need is all of you. Please keep helping us deliver this miracle.

I sincerely hope going forward this blog documents Bede’s triumph, his rich light filled defiance and his beautifully lived life rather than his death. Either way I now have so much comfort that whatever lies ahead Bede will do it his way and that’s just perfect, a miracle in itself.

For now Bede giggles. He is happy and he is whole.
His light bubbles up from deep with in him as he gasps for air between belly laughs losing himself in his joy.

blog 6

blog 5

His trademark light is undimmable, he is radiant, all out dazzling. Our Christmas star.

He stretches, he climbs, he explores and you can see him grow.

He is cheeky and his sense of humour is bold.

IMG_4036

There is still that foundation of peace, a deep peaceful contentedness that sees him through difficult times but now his cheeky smile, his eagerness and his growth just take your breath away. Where before there was a calm stillness now there is energetic exploration.

Our little boy is growing up. What a flipping delight that is!

He looks like a boy at the starting line. Ready to take on life and embrace every opportunity to live it. Roy and I are 100% committed to providing him with every love filled adventure he could hope for.

IMG_3946

Bede may be small but he and his joy are mighty. He’s not done yet.

 

 

 

Note: For now Bede’s still in hospital. We’ve managed to get on top of his lung issues and he is off oxygen. He is needing one of his drugs (a substance that occurs naturally in our bodies but due to the tumour not in Bede’s) every 6 hours via injection. Once we have this sorted out, a tall order, we will get to take Bede home. I’ve lost track of time. I think this admission has been nearly 2 months. SO far it is starting to give us answers though which is good. We are hoping to have Bede home and in good shape to enjoy christmas with his family.

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.

smiles 1

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.

teething smiles 2

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.

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.

IMG_0535

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.

IMG_1250

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.

IMG_4708

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.
IMG_4459
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:

—-

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….

15

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.

 sleeping 1

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

heamatoma

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.

full body

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

bede9

This picture shows bede exactly as he is.

bede99

this photo is Bede to a tee.

matching easter pyjamas

matching easter pyjamas

IMG_3764

worlds most photographed baby

world’s most photographed baby

chilling by the lake

chilling by the lake

IMG_4063

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:

text1 text2 text3 text4

text5

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.

bedeeeeee

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.

image
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.

image
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.

image

image

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.

image
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)