It’s been a while.

img_8341

Family, friends, doctors, nurses, reporters and complete strangers have kept asking me to return to writing.  Mothers of kids with terminal illnesses have asked me to go back to writing because my words have  validated something in them. But one of Bede’s doctors brushed all that aside and said to me “Why did you write? You wrote to give him a voice. Start writing again.”

To be honest I have been buckling under that privilege and like for many people 2016 has at times been a hard one. Not least was within days of Bede’s story airing on The Project we were told we would lose Bede any day. That Bede was in what is known as the honey moon period, even his wellness was bittersweet. That there was no medical explanation of why he was doing so well given his tumour had now grown so large. We were to prepare ourselves.

So we did. I withdrew from uni a week before my final exams. Roy once again put work on hold. We stopped pushing him as hard in therapy. We spoke to Gus. We worked with palliative care. We braced. True to form Bede lived, he shone, he grew.

But we were now in a new place having received so much attention and support and everyone having a different idea or expectation of how we should be feeling or responding to that attention, how we should be living, what we should be doing and all the while the doctors were certain that we would lose Bede imminently, it was time to plan his funeral.

So for the first time my anxiety took over. In the absence of adrenalin, dealing with the blunt force trauma of the news we were losing Bede, that his tumour was now the biggest it had ever been, combined with the chronicity of cares and doing my best to be a fun Mum for our other two kids I have been paralysed. With every ounce of strength I have had I have worked to maximise Bede’s quality of life, hold down the fort at home and hold on to our marriage. I haven’t been returning your calls, responding to your messages, answering your emails because it’s taken everything we have had to just survive. It’s been a brutal 6 months.

But shutting down doesn’t allow for much light to creep in.

I’ve had this concept percolating in my mind of the success story.
Mother’s post images and stories of their children’s lives once they have defeated cancer and they are out fishing, dancing, attending balls, going to school, achieving awards, getting drivers licences. Meanwhile renewed debates rage over quality of life versus quantity and what side effects of cancer render a life not worth living.

Somehow I don’t feel the permission to participate in any of it. Because my child will die or because I am perceived as bias. Either way we won’t have that success story.

But the truth is we are all going to die. Our success is not in some predetermined outcome or measured in months or achievements it is in the way we live our lives. Bede lives brilliantly and boldly and he is seeing in 2017 surrounded by friends and family and with a smile on his face. I keep getting caught out by these moments of OK-ness where I think I wish someone had told me this would be possible back then.

So I want to talk to the mothers who have shared my heart break – who’s children have no cure, there is just time. To the families who the ‘success stories’ don’t resonate with.

Here I am audaciously holding my terminally ill child up as hope.

Because the one promise they made us is that it was impossible that Bede would ever live until two. Now he is starting to drive his motorised car, we have a brand new wheel chair on the way, he is communicating and making choices with his switches, he has completed his kindy orientation. He has made new friends and his old friends love him even more. He is acquiring new skills and sharing the same old soothing light and when I lay on the mat with him the other day he laughed until he cried.

2016 has been hard for many of us but you can have moments of despair, moments where you lose trust in the system, or faith in yourself, where the challenges seem insurmountable, where you lose your positivity or even moments where you wish for the mercy of death and you can move beyond them.

Bede will turn 4 in a matter of days. He will start kindy in a matter of weeks. His brand new wheel chair will arrive in a matter of months. He is once again slowly being surrounded by people who are backing him for the slightly longer haul. This year I will once again try to go back to uni, roy will try and return to his career, our other kids will each reach their own milestones.

3 years after we ceased chemo for Bede’s cancer, a cancer that was meant to retaliate by taking him almost immediately we are at home, watching the sunset and bathed in the glow of gratitude.

We want to wish everyone a happy, healthy, joyful new year. There is so much more to say but for tonight this will have to do.

Bede is well.

 

 

This blog is dedicated to our family’s greatest success story. My teacher, my friend, my uncle. A man who demonstrated to us all that a boy swathed in his parents love and his own strength and zest for life could defy the odds and never be defined by disability. A joker, a family man, a special olympian. The very best of us.
Rest in Peace now Dominic,  you and your memory are so very cherished.

My heart is raw.

There has been so many beautiful and busy things happening in our lives lately. All the while there is Bede. Steady, unwavering. Our touchstone of love and hope and light that keeps us all grounded. That slows us all down. That makes sure we never get caught up in the business in life.

blog one

 

It’s funny how elastic time is. Cress has just turned 1 and it feels like she was only born yesterday. That same year in Bede’s life feels like an age. He has accomplished much but he has also endured much.

blog a birthday

Last post I wrote about how Bede’s distress prompted me to ask the doctors to bring his MRI forward.

So there I sit. In that same room. With that same doctor. I am in the same clothes. Roy wears that same weathered look. But getting your heart broken is never the same.

The doctor asks if we need a support person. We laugh. We have made our home here in this moment. He laughs. I know what that question means though.

It’s growing again. We’ve never had growth in this many scans in a row. Not even in the beginning.

Cut to the chase doc. “How long?”
“Well lets look at the scan first”
“I just need to know”
“6 months. Unless the cancer spontaneously stops growing I think you have around another 6 months with Bede.”

But if having your heart broken is never the same what’s the difference this time?
This time the aftermath is brutal.

blog a 11

My heart is raw. Because the truth is I want my son to die. I’m tired. He is tired. I want peace for him, rest. But I instantly hate myself because I know then that is all there will be. He will have no more growth, no more moments tenderly reaching out to his brother, laying next to his sister. He wont squawk away at his dad anymore, he won’t let me kiss him in the way only I can.
He will just be gone. That is not enough for my special light filled boy. Life is hard but death seems worse.

Roy likens it to having something you love more than anything else in the world, that you want more than anything else, that you treasure above all else but knowing you can’t have it. Knowing it’s better for everyone if you don’t. Knowing you need to let it go. It’s heart breaking.

All I want for Bede is happiness. I grieve that we don’t all get that.
I am angry that we feel so alone.

Roy is confident about life after Bede, that he will be able to go forward living a life in testament to him. That his legacy will be brilliance.But I am scared. Scared that without my steady ship, my touchstone, my beautiful gentle soulful boy I will crumble because my world will never be the same.
blog a 2

I am scared that the woman that will mother cress will be a stranger to who I am now. So I try to smile as much as I can and love as hard as I can in the hope that I can build her up enough that she will weather having me as her mum.

We go on trying to be present, trying to soak in every single moment, utterly mindful of how precious each one is while we spend sunny staurday afternoons choosing toddler sized coffins that would never, could never hold all that our son is. My heart bleeds and I grieve. I am tired. My bones and muscles and every tendon and ligament ache.

But as the bitterness of life rages the storms are rolling in across that familiar ocean. I know this too shall pass.

As I type tears stream down my face and I pound at the keyboard because life is hard and even writing isn’t easy anymore because there is so many conflicting things to say. Because of course amongst all this grief there is light. Bede’s interminable light.

 

blog a 2 puppy

We got a puppy!

blog a puppy

 

Bede has grown more in the last few months than he has in the past few years and I am reminded that often despite the agitation, Bede is the fullest version of himself when his tumour is growing. Gus says now there is just more of Bede to love.

He is immersed in his therapy at least three days week. He is building his upper body strength and undeterred by previous failings he is attempting to crawl. This kid is the personification of determination He is relishing laying on the grass in the sunshine with his brother and sister. He is laughing fuller and deeper than ever before unable to catch his breath as the giggles pour out of him.

Our little Bede who can sign and screech but can not speak mimicked the words ‘I love you’ back to me the other day and it was everything to me.
blog a sibs

Through all this sadness and fear and joy and light and grief and hope and uncertainty and love we have found so much comfort in our friends and community.  A fundraiser is being held for Bede on June 17 in North Beach. With an aim to making his life as meaningful and as happy as possible and his death as easy and as comfortable as possible.

 

I will post more details later but for now you can check out some of the details for the event on the Facebook Event page (CLICK HERE) or on the booking website where you can also buy tickets if you’d like to come down and spend an eveing with us and say Hi. We’d love to see you!
www.trybooking.com/lanh

Our dear friends have also been kind enough to set up a gofundme to help us support Bede during this time and said some beautiful things about us:
www.gofundme.com/wishesforbede

I feel like we are in a fog and its confusing but one unmovable truth remains…
He is small but he is mighty. Bede shines.

The Biology of Bede.

I’ve gone back to uni. In the hope of completing my degree and Bede hanging around long enough for me to be able to afford all the services I wish for him.

bede studying

Bede’s been helping me study.

One of the units I’m studying has a strong emphasis on human biology.
Everything featured in the first lecture on that aspect of the unit related to Bede.
The tentacle like villi that line the gut, the sympathetic and para sympathetic nervous systems, the thyroid, the structure of bones, the grey matter of the brain, the list went on.
Then we moved to the lab and I started looking at some of these things under a microscope.

the brain 1

Cellular structures, as pretty as art.
the brain 2
It really hit me that Bede’s body is failing him on the most basic, fundamental levels. That if we are the sum of our parts Bede is crumbling from within.
No wonder he has been crying so much, no wonder at times the fight has felt so insurmountable.

So what is it that has been sewing him together? His light, our love, your hope?
If our bodies are poetry in motion, cells signing to one another, are life’s intangibles threading Bede back together into the now.

If it is all those beautiful intangibles then how strong is that thread?
I’m not sure. But nonetheless here he is.

Resourceful as ever. Rebuilding himself from within and reinventing himself yet again. Shining his light and his resolve and his unconditional love.

So that even as we fall, as we fail, as we falter, Bede pulls us up and reminds us we are more than the mere sum of our parts. We are whatever we each choose to be.

Bede chooses to play with his brother and sister, to work hard in therapy, he chooses to love. He chooses to laugh in between his tears. He chooses to let it shine. He chooses to pull us in as hard and as close as he can.

Bede’s last MRI showed the cancer was growing again, significantly.

Bede’s symptoms have been intensifying but he chooses not to bow to them. Just as we feel as though it is time to surrender to the thought that he may be deteriorating he regroups, he dominates at life.

So tomorrow we go into the next MRI. Brought forward in response to his ever increasing upset.

I am too tired to hope for a miracle, I am not naïve enough to try but the thought of spending a moment of life without the glorious sum of his cells, without the villi that refuses to absorb nutrients, without the nervous symptoms that refuse to get organized, without the thyroid that refuses to make enough hormone, without the little body that refuses grow, without the bones that refuse to bear their load, without the eyes that refuse to sleep, without the brain that refuses to follow my plan for it, the thought of a moment without those stubborn clusters of cells just renders me useless.
spongey bone
Maybe that’s it after all. Maybe Bede’s presence isn’t in spite of his body’s failings but due to the stubborn, loving, determination that body has generated.

Because at each moment he has chosen us. As I once again hold him before he goes under and repeat those well worn words “you are strong, you are loved, you are important” we will choose him. With every last ounce of strength. For now and forever.

But we are preparing ourselves for the reality that the choice might not be ours for the making.

So as he heads into the scanner yet again we hope you’ll join us in hoping, praying, wishing for whatever is best for Bede.
He may be small, but he is mighty.

black and white bede

I want to be your earth.

 

issy and B

I want to be your earth so no matter what happens gravity will always bring you back to me.

I want to be your foundation, the ground upon which you build.

The dirt from which all the colours of your flowers bloom.
I want to be your earth so my valleys bring you far back from the edge and my mountains let you reach your potential.

Let you relax in my shade.

 

I want to be your earth.
So my sweetness can balance out life’s bitterness and the coolness of my seas will take the sting out of your pain and wash life clean.

I want to be your earth.

I want to be your earth, tie your feet to the ground and never set you free.

But deep down I’m not sure you exist for earth. If I’m your earth I’m scared that means you won’t always be with me.

So let’s be each other’s song and together we can dance on the breeze. Let’s be each other’s breeze to carry us all the way home to you and me. Lets be each others light so in the darkness we can both see.

But really I just want to be your earth so gravity will always hold you close to me.

 

I love you Bede.

A Bede Update.

many faces of bede

Once again there is so much to say that it is overwhelming.
First off the long overdue news…..

You stormed the heavens with us.
You loved, you hoped, you prayed.

Bede’s tumour looks stable. It hasn’t gone back down, it hasn’t grown.
The 6 months we were given has been and gone without us even noticing it’s passing because there was so much living to be done.

I want to jump up and down and scream ‘He’s done it!’ but I think the real proof will be in our next scan in December. Thank you for getting behind our bumble.
In reality we haven’t had much time to think about it there has been too much work to be done!
Bede is a bright determined adventurer. He’s an explorer.

bede walker

He no longer exists in a cold, sterile hospital room. His presence dances through our days. His belongings spill from every surface in our home and his cries and babbles and laughter fill every crevice and surface of our home, our car, our lives and our hearts.
He is determined and he is strong. I suppose his perserverence is nothing surprising but in this new setting, in rehab and intensive therapies, it is awe inspiring. I watch him, our little boy, who fought for his life and who is now determined to live.

bede water bede water 2

Bede loves story time, trying to climb things and music. One of his favourite things is standing in his walking frame and strumming the guitar.

He loves toys that he can control. I think its so frustrating for him not being able to speak yet so he loves things that have a clear cause and effect. He has started learning sign language to communicate with us and is practicing sitting up on his own

There is so much to say but really it boils down to this…

Our family has spent the last 5 months or so in our darkest time. Drifting from positivity. We repeatedly reached out needing a life rope and unfortunately for one reason or another none was there. Bede was well but despite this, we were not. We have been emotionally, practically, financially, physically at our breaking point. One thing has come after the other, a minor example of this was our car and belongings being stolen from our home.

While we have been able to delight in our children and take solace in some of our friendships it is hard to explain just how hard it has been and it has been lonely. Because no one can do it for you.

But we have put one foot in front of the other, and clung to each other and now finally the clouds are parting. We have a carer for the next 6 weeks which is some long awaited help. We feel like we can breathe again and tackle our challenges together and there is space to blog now. So after some unexpected time away, time that we needed to take care of our family, we’re back.

Thank you for holding this space for us.
Thank you for asking after us.
Thank you for letting us know you miss the blog.

Bede is well.

So are we.

The tumour update.

I suppose the moment for this blog has long past.

great

But it’s been too difficult to write.
Following so much joy and hope and just spectacular everyday-ness Bede’s last MRI wasn’t great.
We had been talking about Bede walking, about him going to school one day.
Our doctor walked into our rehab session.

“You’re not smiling”

“No I’m not”

“Is it because you’re just not smiling or because you have our results?”

“I’m sorry guys, we need to talk about the results.”

I clutch Bede to my chest.
How dare cancer do this to us now.
Not with his progress.
Not when he finally visits the park, participates in family dinner, explores.

Not when he is learning to live.
I desperately want to put brain cancer on hold.

This is what the moment you know you’re about to be told your child is dying looks like. You’d think I’d be an expert by now but I’m not.

bede flowers

This is what disconnected soul trauma looks like. A sunny friendly room, with two happy babies, a loving husband, and a man who is far too kind tasked with breaking my heart.
I slump onto Bede’s therapy mat frozen. Looking between my tiny newborn daughter and Bede. Talking to B, reassuring him even though he is oblivious.

I can’t bring myself to get up. I don’t want to. I know they’re waiting for me.

“Come on Is”.

But I cannot cross that threshold. I don’t want to go back into a world where even the golden moments are all about losing Bede. I know when I stand up I lose him all over again. I know what that is now and today I can’t bear the grief. I don’t want to cross that threshold. But here we are and mothering Bede as he deserves demands that I do. So I rise and I brace and I refuse to cry because there are questions be asked.
The answers are brutal. The tumour shows significant growth although we can’t know for sure how quickly it will take Bede its estimated he only has 6-8 months.
My worst fear that Bede has hung around just long enough to meet his sister seems to have arrived.

At night Cress wakes me up to breast feed but I cant get back to sleep. Instead I lay there wondering how I will mother Bede in death. I know we have always wanted to keep him at home and I wonder if and how that will be possible. How I will honour him.

I am hormonal, exhausted, lost and broken when a dear friend, in a comparable position, reminds me of my own words. Words I had given her years a go. “At the end of the day we are the lucky ones. Because we got them. We get them. No one else will ever know the privilege of mothering these boys.”

I remember all we have is today.

Roy and I focus. We regroup. We know we’ve been here before. Almost a year a go exactly. We once again book tickets to Sydney and we hold our breath….

Once again Sydney delivers a completely different perspective.
It lashes out exhausted hope.
Professor Sydney doesn’t think Bede is necessarily terminal. He doesn’t think we should rush the next MRI. He does think the tumour change that’s clearly visible on the MRI is within the realms of normal fluctuations. He disagrees about its significance.
He reminds us to focus on therapy and rehabilitation and nutrition. He says we may just have a very long haul ahead of us and we need to focus on minimizing Bede’s long-term disability.

bedes mandarin

We try and reconcile this with the prognosis Dr Perth gave us. Two men who are leaders in their fields. We decide to live each day is it comes, order a bottle of champagne and wake up the next morning and take the kids to Taronga.

bede cable car

So here we are again living in the in between. Waiting with bated breath.
But there is no waiting for Bede… he barrels ahead embracing life and learning and his brother and sister.

beach smiles

So now the next MRI is tomorrow. We’re leaning towards no more treatment if the tumour has grown. That’s a scary thing to put in writing in the public domain. It feels like a decision that is almost too deeply personal to share but that’s what this blog has always been.

If we choose no more treatment for Bede it will be because our backs are to the wall. Because they are all too exceptionally horrendous due to the unique complications Bede would face. I spoke a long time a go about the fallacy of choice.

So let’s call this the elusive tumour update. Not my best piece of writing, not my best piece of life. It is what it is and it is the best I’ve got right now.  I have a Bede update ready to go but I wanted to separate him from this. I think because who he is now seems so separate from this news.

I was at mothers group today and some beautiful catholic nuns help out looking after the babies to give the mums a chance to eat fruit toast and chocolate cake. I was talking to one of the sister’s about Bede’s scan tomorrow. She is a small gentle woman but with all the conviction in the world she said “Let’s pray and storm the heavens!” So if you have any prayers, love, light, hope, good vibrations, sunshine on a rainy day, wishes to send our way please do.

I just want our Bumble Bede, our brave little explorer, to be ok.
He may be small but he is mighty and more than ever he seems bigger than this.

joy! oh joy! oh joy! She’s here!

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

11739667_10207713812151748_1204333988_n

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

Another MRI day

It’s MRI day here today for our beautiful snuggle bug.

IMG_0736-0

So we’re asking all of Team Bede…

do you have a little love to spare?

Hope, prayers, light, love all received with the deepest gratitude.

There’s too much to lose to start going backwards now.

IMG_0591

We have so much news to update you with I’ve just been trying to find time where my hands aren’t full!

No news has been glorious news.

bede rotto

It’s been a while since I’ve blogged and so many of you are waiting to hear if Bede is ok. I have been a bit swamped with everything so Bede’s incredible Dad Roy has stepped up and is writing his first blog. It’s exciting to note that Bede had surgery in January that after many unexpected and life threatening complications allowed us to remove the tube from his face and feed him into a tube in his tummy. We’re loving seeing his face! Over to Roy….

 

The last time Izzy wrote she wrote about standing yet again on the edge of a cliff. Well Bede has triumphed he has grown he has developed he is smiling he is living.

The admission in Janurary and through part of February was a long and intense. The close medical management and care and love that was shown to Bede eventually got our family home.

Bede and G hangout at the hospital.

Bede and G hangout at the hospital.

Unfortunately each time we were sent home it lasted no longer than a week and bede was readmitted with more internal bleeding. It was a difficult and all consuming time where each treatment seemed to stir another issue. But Bede did Bede and got through it and levelled out.

Bede with nothing on his face for the first time in years.

Bede with nothing on his face for the first time in years.

Kisses with Dad

Kisses with Dad

gus and bede blog

slowly he improved

roy and bede blog

All of this and so much more are also the reasons why the blog has not been updated it has simply been full on.

Bede is now happy not for the passing moment or glimpse we have seen in the past but truly happy, laughing from your stomach happy and he is growing. We are doing rehab 3 times a week, we are singing, clapping, playing and he is even trying to crawl. We are reducing Bede’s medications and he is putting on weight.
Someone said to me last week :   “awww look at him are they steroid cheeks?” and for the first time I was able to say no Bede is chubby.
Bede is telling us when he is happy and when he is not. He is communicating. He is really living.

Morning swims

Morning swims

excited to be home blog smiles with dad rotto blog gus and b blog

We have even been out to dinner as a family with everyone happy... theres a first for everything!

We have even been out to dinner as a family with everyone happy… theres a first for everything!

More than all of that Bede is part of a happy, together family. We have been at home, at the beach, we have been on ferries to Rottnest island, we go for walks and drives up the coast, we play for hours on end and then we sleep not for 2 or 3hrs at a time but for 4 or 5hrs. Our family feels whole. Our family feels happy. Our family feels alive.

farmers markets blog

We eat fresh food, take the boys to the farmer’s markets, we are enjoying life

issy and bede beach cuddle blog gus and roy mettams blog blogthe boys at mettamsgus and B mettams

For the first time in along time I feel like Bede has the world at his feet. I feel it his time to grow, to develop to catch up on the things he missed out on and to do the things people said he would never do. This is Bede’s time to live and I couldn’t be happier to be there standing along side him encouraging him and loving him.

Life glows, we couldn't be any happier to be living this time as a family.

Life glows, we couldn’t be any happier to be living this time as a family.

This is also a good time to announce for those of you who might not know that Bede will be reaching another milestone shortly. Bede, along with Gus, will become a big brother to his little sister due in April/May this year.

Bede cuddling his sister while in hospital.

Bede cuddling into  his sister’s kicks back in January while in hospital.

 

Thanks for your patience, we feel deeply blessed. – Issy and Roy

Just know that you are loved.

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

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

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

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

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

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

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

 

 

—–

 

 

Bede is out of the ICU and avoiding being returned.

Small but mighty. Small but mighty

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

Issy and Roy