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….

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

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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.

 

 

 

 

 

 

 

 

 

27 thoughts on “Clap along if you feel like happiness is the truth….

  1. Oh the tears.. Your writing is exquisite.. Just like your son. He is brave, he is strong and he is an inspiration.

    He is never out of our hearts or far from our thoughts xx

  2. Words cannot describe how I feel looking at those mri’s. I so clearly remember seeing those first mri’s and the sinking, sickening feeling I had to the tip of my toes. I remember holding my own baby oh so close. Your Bede is amazing Issy, he is miraculous and he has changed the world I live in. Tonight, I shall eat ice cream to celebrate.

  3. Beautiful Bede, loved seeing these photos. Will always be sending lots of positive thoughts, what a rollercoaster of emotions.. big hugs to everyone. xx

  4. What an uplifting and joyous update. It is an honour to be able to share this journey with you. Thank you so much for letting us into your lives to share your joy, your sorrow, your delight, frustrations, hopes, despair and your triumphs. We continue to send love, strength and positive energy to all four of you and pray for further improvement and more precious time. xx

  5. YES…. You go Bede – you are continuing to defy all and show how strong you and your determination is.
    You deserve all that this world has to offer and lil man you can have it.
    You have the most amazing parents, family and friend around you – they are you’re added strength – we are your added strength- take it, run with it, live with it.
    Sending so much more love and strength your way.
    Xxxz

  6. Because I’m Happy….Happy for you all and most of all for your beautiful boy! Your words are so brilliantly written. Bede is very lucky to have you as his mum and advocate. As the lyrics say…
    “Bring me down
    Can’t nothing bring me down
    My level’s too high
    Bring me down
    Can’t nothing bring me down”

  7. What an amazing little boy Bede is. And an amazing family you are. Lots of positive thoughts and prayers being sent your way xxx

  8. Miracles do Happen! As the Prayer for a Little Boy asks “Make me a boy who’s brave of heart, willing & strong to do my part”. You’re doing it, little Bede, you are truly doing it! We, our families, old friends and new, strangers all over the globe, continue to pray everyday for more miracles to come your way!
    From my Daily Prayer Book – Today, “Lord, today I want to praise you for giving me the faith to believe, for faith itself is a gift from you”.
    Lots of Love to all of you xxxx

    • Deacon Paul, I remember at Bede’s baptism we asked that if it was god’s will that he help heal him and now here he is by the grace of god. thank you for your prayers and care.

  9. In the ring of life,
    I’ll reign in love (I will reign)
    And the world will notice a king (oh, yeah)
    When all is darkness,
    I’ll shine a light (shine a light)
    And the mirrors of sucesss reflect in me (Me)

    I’m that star up in the sky
    I’m that mountain peak up high
    Hey I made it
    I’m the worlds greatest

    I’m that little bit of hope
    When my back’s against the ropes
    I can feel it
    I’m the worlds greatest

    (Lyrics extract – the worlds greatest- R Kelly )

    One word buddy-Inspirational xoxoxoxox

  10. A truly wonderful update.
    An amazingly beautiful boy with amazing strength.
    Keep on enjoying him, as he keeps on enjoying life!!

  11. This post brings me to tears of happiness. Bede, you are the most amazing little guy, much love to you and your family xx

  12. What an inspiration your beautiful little man is. Keep fighting Bede. Your amazing strength shines through in the way you write about your son. Sending loads of positive thoughts & hugs to Gus too who I imagine is an amazing big brother! X

  13. Am so thrilled with this news – I check on your blog each day for news on how your little man is going and am smiling with all the photos of his smiling face – love the photo of Gus and Bede in their pj’s – you are strong wonderful parents with strong wonderful children. Sar in Como xx

  14. Oh Bede, we all knew it already but you are truly amazing!
    I love reading your raw thoughts Isabella, sometimes so very sad but always so full of love and so uplifting.
    Go team Bede!

    Sammi x

  15. That is wonderful news Isabella, I have been checking your blogs every week hoping that your absences were for all the right reasons …. and they are! I’m so glad Bede has been home with you, Roy and Gus. Keep up the good work, and I’ll keep praying for you all. Lucy (previously Kalparrin)

  16. Bede, Isabella, Roy & Gus: you have touched me in such a profound way. I wish you all the strength to continue this fight and all the happiness that life has to offer. The world is a better place with your smile Bede. You are all truly inspirational! Thinking of you always xxx

  17. Love and light to you and your family roy! Such an inspirational and beautiful little boy you have there! Your wife and you are ao strong I cant even begin to imagine what you go through on a daily basis! Am glad bede is doing well and I will continue to send positive thoughts your way!

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