Grief: the Reality

What is it like living without a child who was an essential, pivotal part of our family - our core unit? … without the child our lives revolved around, by virtue of his illness? Without the child I carried, bore, breastfed for years; the child we carried, soothed and settled for hours, woke to every night, held, cried for, cuddled, played and laughed with, fed, taught, disciplined, and earnestly prayed for?

Grief is described as “broken-heartedness”, “all-encompassing intense sorrow with emotional, physical, cognitive, behavioural, social, cultural, spiritual and philosophical dimensions”. And they say there are 7 stages – but they don’t say how long it takes to get through Stage 1: Shock and Denial, let alone Stage 2: Pain and Guilt.  

Our grief and immense loss feel like a boulder – a heavy, unrelenting weight tied around our necks with a rope of sharp, spiky bristles, from which we can’t ever escape or seek reprieve other than temporary, shallow distraction. And this is a bittersweet burden that we, and others bereaved, carry; for to wish away this burden would diminish the tremendousness of their existence and our love.

- Reading stories to our remaining children and engaging in light-hearted play is like walking up a small hill with the boulder on our shoulders.

- Finding the energy to start housework, and then not withering from exhaustion, or curling up in a ball whenever confronted with a Ned treasure is like walking up a mountain with the boulder in our arms.

- Going for a therapeutic run when I’m feeling emotionally vulnerable, trying to breathe past the volcanic lump in my throat, is like running up a mountain rolling the boulder ahead of me.

- Getting out of bed every morning, after yet another interrupted night, and beginning the herculean list of daily tasks is like leaping hurdles while carrying the boulder. 

- Being around groups of friends with their healthy children, especially those with children Ned’s age, and trying to be lighthearted or carry on a regular conversation is like trying to lift the boulder over and over again.

- Awakening from deep sleep or rousing from our numb trance, reminding ourselves that our darling older son is gone, is like being pummelled in the stomach with boulder after boulder.

- Attempting to plan anything ahead, or formulate a schedule, or focus on a single cognitive task for longer than a few minutes at a time is like trying to lift and carry the boulder, as well as a screaming baby, squirming toddler, and the groceries. 

- Driving near or walking past the hospital and its carpark is like trying to untie the piercing, bristly rope from around my neck with the boulder ever pulling. 

- Commiserating with others over their crisis is like trying to pause, pick up another large boulder, and carry it at the same time, all with patience and a smile.

- Blending into a group or crowd of parents discussing their children, or attempting small talk with passers-by is like trying to make the boulder invisible and hide the wounds.

- Trying to push ourselves at usual pace; trying to not allow our heightened fatigue and irritability to cloud our judgement, or our lowered tolerance and patience to affect our capabilities is like trying to pretend we’re not puffed or exhausted from hauling the boulder up the hill.

- Sleeping is like trying to rest and nurse our aching muscles back to function, with the boulder still attached. 

- Attempting to keep up with the expectations of others who have not been through such heart-wrenching trauma, or the world in general is like trying to compete when we’re running up a hill, dragging a boulder, while our competitors are running free, over flat terrain. We are not on equal footing with those who have not lived with cancer, palliated or lost their child. 

Still, I can’t sleep through the night; I have to keep myself busy to distract my mind from the wearying emptiness and gnawing unease. Still, we can’t walk past Ned’s grade 1 classroom or go to church without feeling flattened by emotion, we can’t look up to our view of a white-peaked Mount Wellington without reminiscing about how much it would’ve excited our snow-loving Ned, and we can’t thank God for Ned’s life here without weeping with bitterness at his premature departure. 

But in Ned’s absence, I wouldn’t want to be without the wound, or eventually the scar. Despite Eleanor’s pain being so profound, I don’t really want her to pray that she won’t miss Ned any more. I wouldn’t want for Lucy to stop referring to him as her “best friend”. It makes me smile when Gilbert points to a photo of Ned and clearly speaks his name, or when we hear from people about another way Ned’s story has touched their lives. When other living children’s mere presence is the reminder of their existence, the memories of Ned are all we have – in every other formal record of current existence, his identity has been erased. So hearing his name spoken, hearing how his life impacted so many, having his birthday and other significant dates remembered gently acknowledges that our dear Ned walked this earth and he was dearly loved, and we thank God every day for that. I just selfishly wish we could’ve had just a few decades, or years, or months, or even just days with him here… 

For now, we’re contesting a different marathon – one with a boulder dragging behind, and no earthly prize at the end. And with all the aching muscles, torn ligaments, chafed skin, and bleeding blisters, it is by the grace of God that we are even running it. 

“We are hard-pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.”

2 Corinthians 4:8-9

Grief: the Unknown

I didn’t know once what I know now.

I didn’t know how heartwrenching it would be to watch your 4yo sister kiss a framed picture of you while gently whispering “I love you Ned”. 

I didn’t know how empty a dinner table could feel even with all of your 5 family members sitting around.

I didn’t know just how much strength would be needed to box up your clothes, to wipe your routine off the whiteboard, to wash up your drink bottle – so much so that we haven’t yet attempted any of these. 

I didn’t know how on earth I’d come to miss dispensing regular medications, imploring you to eat your specially-prepared foods, and chatting to you on our way into and out of hospital

I didn’t know how defeated and crushed your Dad would seem under the weight of his immense sorrow. 

I didn’t know quite how large the hole that you filled as Daddy’s sidekick and art companion would gape.

I didn’t know how distressing it would be to see other kids your age participating in school activities and running with joy abounding. 

I didn’t know how hollow our family conversations would sound without your witty interjections and comical Dad jokes.  

I didn’t know quite how lonely your 2 sisters would feel, how tightly the tentacles of a lost brother would strangle their souls. 

I didn’t know how much Gilbert would remind me of you, especially now approaching the age you were first diagnosed, when you still lived with such joie de vivre.

I didn’t know how dejected I’d feel without your sensitive intuition for discouragement and your consequent gift of cuddles. 

I didn’t know how deeply it would cut me to headcount only 3 children when it’s time to leave anywhere.

I didn’t know how frequently my mind would revert to still believing you were here, trying to experience things as if you’d never left, or trying to see things through your eyes.

I didn’t know how bitterness could so tinge, how sorrow could so colour any new experience, even those intended as pleasure or distraction.

I didn’t know how soul-destroying it would be to receive mail containing new family medical ID cards… without your name listed. 

I didn’t know how many times I’d replay your final breath in my arms, in the warmth of our bed, with tears soaking my pillow and one of your favourite hymns playing. 

I didn’t know how intricately certain places, sounds, smells and objects would be woven with memories of you.

I didn’t know how triggering Fridays would be - rolling around so flippantly, but yet an ominous reminder of another week since your departure.

I didn’t know how the colour red would be so affiliated with all things you, how often we’d wear it, instinctively knowing it was “red for Ned”, paying tribute to you.

I didn’t know how long those flashbacks would continue, how terrifyingly interminable the emptiness would be, and how overwhelmingly the emotions would tumble out and grip once they’d started to thaw. 

I didn’t know how horribly final death could feel, despite being forewarned; moreso when contrasted with the preceding years of last-ditch clinical trials or life-saving treatments – always “something up their sleeve” to give us a glimmer of hope amidst the gloom. 

I didn’t know how cheated I’d feel that the long-awaited, much-deserved and hard-earned prize of YOU was ripped so cruelly from our triumphant arms at the end of our tremendously gruelling race.  

I didn’t know how furiously enraged I’d be at God for allowing your body to give up, but conversely how wholly dependent we’d be on His strength to carry our broken selves through this darkness.

I didn’t know the profound depths of my gratitude for the years of you that God did give us.

I didn’t know it was possible to miss someone as fiercely and desperately as I miss you. 

“… for those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”

Isaiah 40:31

Now You Are 7

To my darling son, Ned,

Today is your 7th birthday. 

SEVEN whole years since we welcomed you so joyfully into our family – to the delight of your doting older sister, 3yo Lucy. Dada and I were thrilled to finally meet our ‘buddy’, our Ned, inhale your untainted sweetness, breathe your freshness, cuddle the little black-haired bundle of you… although we soon realised you weren’t quite as thrilled. We became rapidly acquainted with wearing ear muffs, bouncing on the exercise ball for hours through the night (to no avail), and the various cracks in our neighbourhood’s footpaths as we paced the block at all hours. That first year was arduous - we cherished your babyhood oh so dearly, but were brought to our knees with desperate exhaustion; my days clouded with the fog of postnatal depression while we tried to maintain family life, work, continue studies, and sit exams. There were several similarly-aged babies amongst our close friends, and I often guiltily coveted their placid natures, their contentedness, and their stretching sleeps, longing for just a tiny slice of their Mums’ enjoyment and rest. But you were a baby of extremes, and though we were challenged by the abnormal intensity of your screaming and sleeplessness at one end of the spectrum, at the opposite end, your glee and exuberance was a delight to behold – your smiley cheeks dominated your round face, you belly-laughed uproariously, and your mirthful giggles emanated like the fizz escaping from a shaken soda bottle. 

But then came your second year… upon which I look with such sadness and guilt. When exactly during that year did you start feeling so tired that you whimpered when it was time to get up in the morning? How many months before your 2nd birthday did your legs actually start aching so dreadfully, though you couldn’t articulate it? When was it that my embittered and doomed battles to get food into you were as a result of your incessant nausea? At what point were your more frequent night wakings because of your general discomfort and pain? When was it, precious Ned? Because I’ll forever live with desolation that I knew not of that suffering or your need for comfort; the shame that I was so preoccupied studying for fellowship exams that I missed red flag symptoms; the guilt that I was so desperate to get you walking and eating that I tried forcing you against your will… but you just couldn’t tell me. 

Day after first diagnosis (25/07/2014)

And yet, as I now meander through my innumerable memories – the ones not so painful that I’ve omitted them from my mind – the sad ones have been sifted to the bottom, leaving the jewels gleaming and exposed… the sound of your sneaky cackle, the quizzical way you called my name, the traditions and routines you loved, the bravery you demonstrated, the tenderness in your play with Gilbert, the kind concern for your sisters, your earnest focus on tasks, the toilet jokes you regaled at every opportunity, the insistence on wearing certain clothing, the prayers you whispered for the patient with each ambulance siren you heard, the perfection of your fragile body cuddling into mine… 

Now, it’s both the familiar and the strange that trigger memories, sometimes floods of tears, sometimes anger, sometimes resentment, sometimes just sheer hopelessness, anguish and painful emptiness where once there was your cheeky grin and your hand to hold.

You were the glue in our family – you were Eleanor’s sidekick at home, building Lego and wearing dress-ups together; you were Lucy’s co-conspirator and “big kid” partner in crime, getting to do the older activities or go on more ambitious adventures with Dada; you were Gilbert’s guide and cars playmate.

Eleanor gets a lot of “tummy pain” now, she mimics a lot of your symptoms, and cries a lot. She says it’s because she misses you. She prays that Jesus will make you a comfy bed, feed you porridge and sausages, and have lots of lego for you to play with. She reminds me of the funny names you called each other (“ba-doongy-face”), and the silly jokes you shared – like “Tuesday (‘Chews-day’) is for ‘choosing’ eggs, and Friday is for ‘frying’ eggs”.

Lucy’s her normal self sometimes, but she gets sad and cross a lot. She says it’s for no reason, but I know the strangeness of our smaller family unsettles her. I know the intensity of her energetic sister doesn’t fill the hole of your comic genius or more easygoing nature. She gets stressed that more precious things will be taken away from her, and doesn’t like to say that we’ve “said goodbye” to you. When Eleanor was scared of ghosts in their bedroom, under the cover of darkness, Lucy explained gently that if any ghost visited, it would most definitely be you, and it would be really nice to see you again. 

Life has certainly become logistically simpler without the constantly-altering medication doses, the rehab exercises, scheduled tests and routine appointments, Melbourne trips; without the uncertainty of every day relying on your temperature and general health. But it’s an unwelcome and bitter simplicity – a freedom I’m loath to take advantage of. Though I so disliked a lifestyle revolving around the hospital institution, I now miss the formal construct of people paid to check in and monitor results, discuss the next steps and the nuances of treatment; I miss the safety represented by boundaries and parameters that I once hated. 

One thing that has stood out to me more than anything else though is how adored you were, my beloved Ned. How did you, in your short 6 years and 10 months, make such a memorable impact on so many people? How did you so readily offer up your beautiful, cheeky smile? How did you so warmly cuddle people with such fond affection? How did you so cheerily invite people into your life when you were in such pain yourself? With never with one iota of resentment or bitterness towards others for their good health, their physical abilities and the fun activities you missed out on. We still had an awful lot to learn from you. 

My boy. Though my face might often seem so composed, or my comments seem so flippantly jolly, or my interactions with your siblings seem so unaffected, your absence is so very profoundly evident in our lives. In so many moments of every day, there’s a distinct Ned-shaped hole. I often try to imagine how you’d play with Gilbert right now, how your cuddle would feel, how you’d get so cross with me for putting your lego away, how you’d comfort Eleanor when she cried in the story, how you’d talk to Lucy in bed at night despite being told not to, how you’d have sat with your friends in class at school, how you’d hold my hand while we crossed a road, how you’d play Snap with me over and over again while waiting for chemo at clinic, how you’d plead for another babycino, how you’d request more olives for lunch, how you’d ask us to turn the heaters up because you were so cold yet still insist on wearing your Avengers shorts, how you’d obligingly come over for me to take your temperature, and compliantly take all your medications… I’m left wondering what would’ve changed in each of these scenarios over the past 7 weeks. I’m so sad for the future you didn’t get to live. Every Friday signals another week without you; another reminder of the finality of this enduring heartache. 

God’s got you now though, my Neddy boy. How I wish that your 6th birthday in Seattle hadn’t been your last; how I wish that you could have woken up to balloons, snuggled into our bed for morning cuddles, and spent just another birthday with us, but how fortunate are we that God lent you to our family for your time here. You “going home” doesn’t make the grief and anguish any easier to bear, but it gives me hope that you are in the arms of one who loves you far greater than even I did, a hope that one day I will see you again. And so, as we go back to work, to school, to our various daily activities, we will always remember you - we’ll keep lighting the red candle, we’ll keep watching the videos of you and flicking through the photos, we’ll keep telling stories and using your sayings, we’ll keep visiting your grave, and we’ll keep celebrating your birthday on the 19th May, with sausages, a birthday cake and a touch of red.

Happy 7th Birthday, Neddy boy. We miss you so much.

With all my love,

Mama

#rememberingNed

“No guilt in life, no fear in death, this is the power of Christ in me.

From life’s first cry to final breath, Jesus commands my destiny.

No power of hell, no scheme of man, can ever pluck me from His hand

Till He returns or calls me home, here in the power of Christ I’ll stand."

- Stuart Townend

New Life

Never before has the Easter period been so intimately woven with loss and deep sadness for us. At Easter last year (from when most of the attached photos were taken), as we participated in the RCH Good Friday Appeal, we also embarked on our crowdfunding campaign to get Ned to Seattle for a new clinical trial treatment. We harboured such uncertainty, concern, dread in realising the urgency and necessity of our expensive decision, especially when we realised that our lengthy application to our government’s overseas treatment program would be denied due to conflict of interest. But then we were fuelled by hope. Hope in the form of covered finances to give Ned a lifeline. And after initial shock that Ned’s leukaemia had mutated and proliferated so rapidly in the interim, followed by despair that he might not get back home, that very Seattle treatment bought us 10 months of precious time. 

What a difference a year makes. There was always hope that we could cling to - hope that the next results would show improvement, that the treatment would work, that a miracle would occur…

And they did; the hope was not unsubstantiated - with every shocking result or symptom showing the almost-unparalleled, insidious nature of Ned’s leukaemia, and its ensuing palliative discussions, a miraculous turn of events would then follow, stunning even our medical teams. Whilst we’d confronted devastation and despair time and time again, there was always a tiny glimmer of possibility. 

Now, though, when waking to our new reality every morning is so very painful, when time as a family feels so bizarrely empty, when we feel consumed by convulsions of sorrow and angry tears flood our souls for all Ned’s suffering, his unrealised potential, our family’s brokenness; when death is so final, where then is hope? 

 “For God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life” John 3:16

There have been so many questions put to me about how we could possibly have faith despite our trials and bereavement. But we don’t just cling to God’s existence and sacrifice just because it makes us feel better about Ned’s death. We don’t just say our prayers because it makes the answers we give to our kids less painful. We actually don’t know the answers. But our questions and tormented path don’t negate God’s existence. They don’t negate the historians’ and eyewitness accounts of Jesus’ torture, death and the empty tomb. They don’t negate our experience of His guidance and peace through such dark tunnels, though I railed against Him. They don’t negate God’s remarkable act to demonstrate His love for us by sending His son to restore our broken relationship with Him, despite our actions, so that we can have life beyond our earthly existence. And it is this knowledge that has carried us through the most harrowing of turmoils, through the unanswered questions; it has filled us with a peace far beyond any clean bill of health or positive bone marrow result. 

Though the parameters of our physical lives have been governed by cancer for so many years, our Life is defined by faith and hope. Hope that there is life beyond the grave, that death is not final. And today, as we have celebrated Jesus’ resurrection, it seems apt that I articulate how we have purpose and hope, despite our grief, for we know that we will certainly see our son and brother, our beloved Ned, again. 

(For those who would like a link to the recording of the funeral service: https://vimeo.com/329538224)

A Father's Chronicle

There is a saying “A parent should never bury their child”, and it was one I hoped would never ever be true for us. But here we are, and it’s incredibly sad. Yes, this is a time to mourn, but it’s more importantly a time to celebrate Ned and the amazing things about him, the things that brought us all joy. He had a short life, but an epic impact! As this huge crowd at this very event and the 50+ video livestreams across the world are testament.

I want to tell you about Ned by telling you about the things that made him who he was. I’ve grouped these things into categories, the first, as it should be, is: 

Ned the Artist  

The first time I taught Ned this word, he said “art-arse” instead (for those of us who’ve been to Arts School you’ll probably find this especially funny).

As an artist myself, I loved how much Ned enjoyed art. It was something special we both shared. And throughout both his transplants and many times in between, art-making, on his own or with me, was of great therapeutic value for both of us. And he was good at it! He was uninhibited, imaginative, creative and willing to try new things. He was careful: placing and choosing colours or shapes and he always knew how he wanted it to be, but was rarely frustrated if it didn’t always turn out the way he wanted. 

He was visionary, so many big artistic ideas and so many projects (like me). Many of them we got to work on together, sadly not all completed (but then I remind myself he liked the process as much as the outcome). Ned often dreamed up all manner of elaborate creatures, like cardboard crocodiles with wheels for feet! I kept thinking he had the potential to become a better (and probably more success) artist then I’d ever be. 

His Duplo creations were another expression of his creativity and imagination, making a swathe of amazing things. He’s often ask me to create certain aspects, like ships of big elaborate trucks to add into his games. I must confess I whiled away many hours of my home Dad days playing Duplo with him. 

Being a fan of superheroes, he often liked to create Duplo versions of them - making pilots into Captain America or red haired characters into Black Widow. And he’d always check the details of each superhero. He’d often tease his mum about her muddling of the DC and Marvel worlds. 

In addition to this he also loved to create the ‘animal versions’ of the superheroes; for example he thought Hulk’s animal would be a crocodile, or Iron Man would be a rhino and Captain America as a bear, and you can work out what he thought Black Panther, Spiderman, Falcon, etc, would be in animal form. 

Ned loved to make things for others, and while he’d often say “Daddy lets make something together”, more often he’d be asking “Daddy, can we make something for Lucy, Eleanor or Mummy?”. He was especially prolific with card making, often with special messages to accompany his wonderful drawings. 

Ned the Affectionate Gentleman

Ned was such a gentle soul; he loved gently touching babies and cuddling them. He was so excited when we told him about Emily being pregnant with Eleanor and Gilbert.  

We often shared ‘Highlights’ around the dinner table, and on one occasion Ned asked Emily’s pregnant belly “baby highlight?”

“Probably when I ate chocolate” Emily replied.

Ned often asked how we were going, and at his most tender vulnerable moments, as I helped him with the most intimate of physical tasks, he would whisper in my ear “I love you Daddy”. Words I treasure so much. 

Ned had a gentle, unassuming manner and captivated the hearts of so many. His smile, laughter and charm brought joy to the many staff that cared for him over the years. He always spoke confidently but politely to them, and always thanked them for looking after him. 

Ned loved to give cuddles: as soon as he knew someone was a friend, he’d give them a hug, often instead of high fives or handshakes (a man after my own heart). 

Ned the Comedian 

Ned always loved a good joke, and while many were poo and fart jokes (I blame this entirely on the Clown Doctors and Starlight Captains), he also loved unusual jokes. His favourite was:

“Why can’t Trev climb a tree?” 

“Because Trev is a tractor.” 

He developed his own tree based joke: “What kind of paddy lives in a tree?” 

“A Pademelon.” 

Another classic was once driving home from hospital, we passed a car with its alarm going off. He asked “what animal does that car need, Dad?” 

“They need a llama!” 

At a young age, Ned also developed, what we call “the funny face”, a hilarious wide-mouthed, wide-eyed crazy face that had us all in stiches of laughter (you’ll see it in the montage).

Ned also loved slapstick comedy, either laughing and interacting with my impersonations or joining in on jokes with me, like pulling his trousers up to create ‘Harry High-pants’ when I dressed him. He’d then go and proudly show Emily, as he knew she wouldn’t be impressed (or at least pretend not to be impressed), and burst into laughter at her eyeroll. He also loved pulling faces with me to take selfies and save them as Emily’s phone wallpaper or home-screen. 

Ned the Musician

Ned loved music; he had beautiful voice (sometimes I’d hear him singing to himself), a good sense of rhythm and thoroughly enjoyed listening to many varieties. He loved going to Mainly Music  when he was younger enthusiastically joining in on the dancing and singing. 

Ned the Fashion enthusiast 

Ned always had very particular ideas of what he wanted to wear, and one of his favourites was his ‘Serious Shirt’ (blue-collared polo pictured above). But he also loved his Marvel shorts, from a friend in Seattle, which he is dressed in now. He often wanted to match me, but also liked to match his siblings or significant others  

Ned liked to wear dress-ups out, even once sweltering in a spaceman suit to Bunnings. Like so many other things he taught me, Ned helped me to be less inhibited, to embrace my inner child, to join in his imaginative world unencumbered by the grown up world.  He embraced my dagginess but also loved it when I dressed up. If Emily and I ever were going somewhere formal he’d make compliments about my suit. He would’ve loved this suit, which I bought for today. 

Ned the Chef

Ned loved to cook (especially cracking eggs), but hated to eat. The only exception was when he was on high-dose steroids and developed very particular cravings: salt and vinegar crackers and cottage cheese, or sausage rolls in earlier years. 

Another favourite of Ned’s were Bunnings’ sausages - he always checked what weekday it was to see if they’d be available. He also loved having pikelets at the Maxwells’ - somehow they always tasted better then the ones I made at home. 

And finally I have to mention the beloved ‘Quiche Café’ (aka Penny’s Bakery next to Woolworths) - their mini spinach quiches were one of the few things he’d eat without coaxing. 

Ned the Sportsman

Quite unlike his father, Ned showed impressive ability at throwing, kicking balls, and great balance on his bike, even teaching Eleanor how to use hers. He loved riding it down the hill fearlessly (no care for the expensive medication strapped to his back) 

And he had big plans for our land including a flying fox, obstacle course and major extensions to the new cubby house - all to satisfy his adventurous spirit.

Ned the Park Ranger and Adventurer

Ned loved animals - he always wanted to catch the lizards outside (lizards were his favourite animal), enjoyed watching the wallabies and feeding the echidnas at Bonorong and on our land; he loved dogs, loved the sheep and chooks at my parents’ place. And he really enjoyed the night walks to see possums with the Richardsons.

He really loved the bush, either when he visited his grandparents’ place (where he loved to climb trees, pick blackberries and build cubby-houses") or at our new home, where we finally got to live from the beginning of this year. We enjoyed quite a few walks around the property, and he loved to sit and cuddle his guinea pigs, and laugh about how fat his Tommy is. We’re so glad he made it home.

He loved going out on adventures walks or drives in the car, whether it was to the Tip Shop, supermarket, hardware store or even just to explore the new building works around Kingston.  

When Ned was younger he’d ask daily “Where are we going today, Dad?”, often wanting it to be the Tip Shop or the hardware store. 

Sometimes I’d ask this question as a way of making trips to hospital more exciting, and I’d continue the good-humoured banter right into theatre where I’d joke about it being a show put on just for him with all the bright lights, cast and crew, to try and make it more interesting. 

Ned the Naturalist

Ned loved to be nude, he especially enjoyed a nude run around the kitchen, laughing and dancing all the way. Often his laughing and giggling siblings would join you in this nudist display. 

Ned the Firefighter Paramedic 

Ned knew the different siren noises. He hated bush fires and fire alarms, but he loved to watch me light the wood fire in our home and enjoyed sitting watching the flames burning and getting dressed after a bath by the fire, and every time I light it now, I remember him. Ned especially loved the special superhero firefighter day that was put on for him as an early birthday present, and aspired to be a driver of all emergency vehicles 

Ned the Communicator 

We were worried about his language development in early years, but the time in hospital with so much one-on-one time meant there was a rapid improvement. Ned entered easily into conversations, accepting people into his confidence and loved to talk about his family. Ned had quite a loud voice, especially noticeable when yelling on video calls with overseas friends or relatives. Ned had some very distinct words (and maybe you’d like to adopt a few of these to remember him by): 

From Earlier years: 

• “Soop soop, ooh ooh ah ah”  (super-monkey)

• “Soop soop, mark mark” (supermarket)

• Tell himself to “settle down” to calm himself when he was panicked

 More recently (many of which we still use to remember Ned):

• “Scuffle” (whisk) eggs

• “Wrinkles” = sprinkles

• “bot-bot” = bottom

• “upf” = up

• “metal” = medal

• Farewelling someone: “See you later Alligator, don’t forgot your toilet paper”

The Brother 

Ned was a great brother; he loved his sisters and brother so much - his siblings whom he so gently nurtured and so beautifully cared for: Lucy, the big sister who so longed for and prayed for a baby brother, and who loved and cared for Ned from first to last cuddles. Eleanor his playmate and young padawan, eagerly soaking up what he had to tell her and teach her. And Gilbert, his companion especially through some of the darkest times. (Lucy has a few stories she’ll hopefully share after me.)

The Son

I am so privileged to be Ned’s Dad. I’ve learned so much, and been so inspired to be the best I can be. He embraced my inner 6yo boy as playmate, companion and fellow creator. And he looked up to me as his devoted Dad, guide, mentor, comfort and Marvel expert. 

While now here on earth I only have one son, I will always be the father of two sons. But now my oldest son is free from pain and more alive then he ever was here on earth. And I hope he’s up there making sculptures, cooking meals, playing with animals, throwing and catching, telling jokes and hopefully getting all his questions answered as he hangs out with his Heavenly Father. 

A Mother's Tribute

Our beautiful, courageous son. Rest in Peace now. You couldn’t have fought any harder.

• Edward (Ned) Isham 19/05/2012 - 29/03/2019 •

© I draw childhood cancer

Emily’s Eulogy 04 - 04 - 2019

What a journey this has been. A warpath. For a boy who seems to have captivated and won so many hearts merely with his cheeky smile, unassuming, kind nature and resilient character. 

I speak those words so flippantly, but they were the essence of Ned. 

·      He was kind – the day I found out he relapsed the first time, when I was in clinic on my own with him and baby Eleanor, he could see I was upset, kept patting my knee, looking up at my eyes, asking “are you ok, Mummy?” He’s done this every time when I’ve been upset and my eyes have welled up.

  He and his sisters also had a lovely tradition that Lucy started years ago when she realised Ned wouldn’t be going to as many parties or events as she was – (not to my knowledge) she’d ask the party host if she could take home a piece of cake or spare party bag for her brother. Consequently, well-intentioned Eleanor started saving things from her outings (eg. a half-eaten muesli bar for Ned and Lucy to share), and dear Ned, whenever offered a lucky dip or gift as a reward after procedures, he’d always get an extra or put some aside for his beloved sisters. He’d go to great lengths to choose out a specific Frozen bandaid for Eleanor from hospital, and a sticker for Lucy. 

Since Eleanor had determined that her guinea pig, Giraffe, was a girl (but we knew all 4 were male) and got very stroppy when anyone suggested otherwise, he would humorously say “yes, Giraffe’s a girl, Eleanor”, then turning to us with a cheeky grin, hand covering his mouth, and whisper “he’s really a boy”. He was concerned for her when she was in hospital (though she loved every minute) and pep-talked her, he was sad when Lucy was being disciplined, trying to remedy it by siding with her, and he cuddled Gilbert during his tantrums. 

·      He was cheeky – he loved spiders, and with them, he loved teasing anyone and everyone, including his arachnophobic aunt and great aunt, and poor unsuspecting nurses working on the wards. In Seattle, with the encouragement of one, he tiptoed out to their work station, and placed a few on keyboards and work computers and then called out to them, giggling at their shock and horror. He also knew full well that my Dad and his family barrack for Hawthorn Football Club, and when he realised that the Sydney Swans were arch rivals since their 2012 premiership win over Hawks, he decided to provoke and goad them all long-term, particularly Dad, by making the Swans his team – hence sparking his love of the colour red… further fuelled by his love for fire engines and super-heroes.  

·      He was so very resilient – he hated procedures, and actually became more anxious and sensitive to them as the years went on (justifiably so). But he knew that they were non-negotiable, and though he cried or sometimes screamed, he would endure it, and once it was done and cuddles were given, all was forgiven and forgotten. Never did I ever hear the phrase “it’s so unfair” uttered by Ned – though he expressed sadness and dislike for certain procedures, he never questioned what discomforts we had to subject him to. 

  He still thought of others. During his last night, after I tended to yet another vomit and cleaned him up on his mattress next to our bed, I leaned down, kissed him and whispered “I love you Neddy boy”, and he replied quietly, in his half-delirious state “I love you too Mama”. 

It’s a cruel irony that the child who we’ve spent the most one-on-one time with, caring for during his most vulnerable moments; the one in whom we’ve seen the most deep resilience, courage and raw emotion, is the one we’re now mourning. 

But I will not say that Ned lost the battle. Look around; look how many people are here, united simply because you have loved Ned or walked alongside our family. No, cancer has not prevailed. In my darker days, I have and will continue falling to pieces, feeling sometimes like cancer triumphed; I will grieve for his absence, for the gap left in our family, for the lost experiences and memories; I will struggle to get out of bed, feed and dress, cajole and encourage our other children; I will question God about what the point of all of this torment has been. What was the actual point of all of this – our enormous struggles, Ned’s suffering, our relationship tensions, our lost experiences, displacement, grief… what was the point? But then I realise that Ned was a precious gift from God – a gift in the form of a perfect 3.5kg baby born in May 2012, into a life of only 6 years, 10 months and 10 days. 216,360,000 moments (seconds) approximately. We did everything humanly possible to treat his cancer, and yet it didn’t respond. Though we weren’t to know, nothing could have prevented this end. But God gave him to us – to me, Seth, Lucy, Eleanor and Gilbert, to us all – and how much richer are we for knowing him. Not all of those 216,360,000 moments have been full of laughter and joy, but gosh the emphasis on the life’s transience thanks to Ned’s joie de vivre juxtaposed with his physical fragility have really made me live most of those moments as a much more present and grateful mother, trying to immerse myself in each moment as it stands, rather than fearing the future. And God has graciously given me the aliquots of strength I need to get me through just one moment at a time.

I’m so glad that, when this all began, Seth and I made the decision to intentionally “make memories” – when adventures seemed like way too much effort, when we were just too exhausted, when the energy expenditure required for an outing or event seemed to far outweigh the joy for us, those moments are when we’ve looked across and reminded each other that we’re “making memories”, and those times have often proved to be the most poignant and memorable. 

Because if anyone had anything to fear, it was Ned, and it was us. Starting our 2yo on heavy cancer treatment 2 weeks before my fellowship exams, which I consequently failed, having our 3rd child and then another, re-sitting my exams, selling our house ourselves in pursuit of a nicer home with bush for our kids to grow up in, and then Ned’s relapse in June 2017 just after my final exam, just after our house move, when I was 29 weeks pregnant with Gilbert, and relocating entirely interstate. The initial 10 months, mostly admitted in hospital, included Gilbert’s birth and putting our younger daughter through procedures. Then a 2.5-month trip to Seattle with so much uncertainty about outcomes and many panic-inducing unknowns (like traveling internationally for 30+ hours with 4 kids, one unwell). Then returning for another 6 months in Melbourne and a risky 2nd bone marrow transplant. There were so many sleepless nights, gastro episodes, heartaches, logistical complications, and just sheer exhaustion in between. Seeing each of our family members suffering has been awful, but watching Ned suffer was the worst – it often broke me. His was not a fun-filled life. But he still found joy and laughter. God has been faithful in only opening one door at a time, one moment at a time, and we’ve learned to trust him implicitly. And He knows intimately the pain of watching a child suffer. His peace is what filled my soul as my dear boy took his last breaths resting in my arms, warm in our bed.

I’d like to acknowledge all of the other parents living in the shadow of childhood cancer… to acknowledge all the anxiety, the waiting, the despair, grief, horror, fear, disappointment, broken relationships, interrupted hopes, and suffering. It’s a dark, dark place that you can’t possibly convey to those on the outside. 

We’d also like to say thank you. Thank you to those of you who contributed to getting us to Seattle for treatment gaining us precious time with Ned. Thank you to Seth’s parents, Steve and Marion, and my parents, David and Prue, having returned from their work in Congo several times. They have all continued to love and care for us along this warpath. 

Thank you to those close family members and friends – you know who you are – and our church family and community who have carried us and interceded for us in our despair and heartache. Thank you to those who have made special trips and travelled interstate to be here, to the firefighters and emergency personnel paying tribute, and to so many behind the scenes who have worked tirelessly to make today happen. 

And thank you to everyone who has followed our lives, who has come to mourn and celebrate with us today, who has been loving our family, and who is now sharing grief with us of losing a boy who has had such an impact on you.

And to our other children, Ned’s best friends: 

Lucy, we love you just as much as we loved Ned. We saw you – caring for Ned, looking out for him, enjoying his company, making up games, reading books to him, cuddling him, teaching him to walk and talk, singing to him and crying for him. We heard you enjoying conversations in your shared bedroom after lights-out. We saw you, and we both think you’ve been such a beautiful big sister to Ned.

Eleanor, we love you just as much as we loved Ned. We know you loved dressing up, building duplo, painting, riding bikes, chatting to him, making him giggle and roll his eyes at you. We know that you miss him already, but we love that he had you as his crazy little sister during his time on earth, keeping him on his toes every day. 

Gilbert, we love you just as much as we loved Ned. You were his companion through both transplants, the one he taught to play cars, to strum a guitar, to look out the window for trams; the one you looked up to, and we’re sad that you won’t get to know him as well. But thank you for dispersing the tension and bringing us all delight through dark times. 

Ned knew he was going to be with God. Though we didn’t put to him precisely what was happening, I had many conversations with him during the car drives to and from hospital about what it will be like in heaven, with no more hospital or needles, how he’ll be with Great Grandad and his friend, Zoe, how Jesus will be there preparing bedrooms. He knew he was getting sicker, but he was most certainly not fearful. And I know he would’ve run and leapt into one of his beautiful whole-body hugs with Jesus when he finally went to Him. 

I’ll end with his gentle, unassuming prayer – the words he prayed unprompted with me at bedtime a few nights before he died:

“Dear God. Thank you for loving me. Please help everyone have a good sleep. I love you. See you when I get to heaven. Amen” 

Our Ned knew it was not the end. Though he is no longer in our sorrowed arms here, we know he is in the everlasting arms. So let his life be a testament to God.

The End is Nigh

“Lucy, Ned’s leukaemia has come back again. And we won’t be able to get rid of it this time.”

 “Why, Mum?! It’s not fair! Why has God let this happen??”

 “My darling girl. I’m angry too. And so so sad. But given Ned was going to get leukaemia anyway, and nothing to our knowledge would have prevented this, given he was born into his short life, aren’t we fortunate that God chose our family to have Ned?”

 We’re living a surreal daily existence; an alternate reality. A reality whereby the parameters of your old life have shifted dramatically. Where your prompting for your child’s farewells needs to change from saying “see you later” to “goodbye”. Where your utmost focus for your child is pain minimisation and comfort, no matter the cost, rather than considering the long-term consequences of certain medications. Where your daily self-expectations amount to simply responding to your children’s frustrations and meltdowns calmly, and administering each of the numerous medications precisely via the correct route. Where the very sick child’s irritability and lack of tolerance is granted compassion rather than discipline. Where each day’s usual firm routine and non-negotiable responsibilities are bent and moulded around each child’s capacity.  Where the little things, like brushing teeth, doing some physical activity, eating a variety of food, or even eating at all, no longer matter. Where getting each child to sleep the night in their own bed is no longer an aim. 

Since my last update, we’ve travelled a torturous rollercoaster, riding a brutally steep and swift descent from our preceding victorious ascent. Initially, in the five days after we received the news of his relapse in Melbourne, Ned’s disease proliferated at a devastating rate, and we had to cancel any ideas of his much-anticipated Hamilton Island Make-a-Wish trip, as well as letting my interstate family and overseas parents know to come as soon as possible. Instead, over the course of 2 days, some dear friends and the MAW team banded together to send us spontaneously up the east coast of Tas for 4 days. And although the reason for this holiday never slipped from Seth’s and my consciousness, that precious time away enabled us to switch off somewhat from the outside world and bask in obligation-free time as a family, although Ned became quite unwell on our last day, propelling me quickly back into my main palliative carer role. 

Since our return, our immediate panic subsided with evidence that the palliative chemo was having an effect in reducing his disease burden and holding it steady… thus gratefully learning we may likely get a few more months, rather than just a few days to weeks as previously thought. These last few weeks have allowed us to reach some milestones that we’d previously thought unattainable – one being able to fight ‘villains’, save captives, ride fire engines and a helicopter in an epic local community extravaganza organised for Ned by some dear church friends and local kindhearted firefighters. Ned also proudly accompanied Lucy in the bridal party for a good friend’s wedding, and then celebrate her 10th birthday with her – albeit from bed. 

However, we need to tell you, our village, that this time, the end is nigh. 

Last Friday, Ned had a GA in theatre for planned surgery, new PICC line insertion (for central IV access), spinal chemo, a bone marrow test and lumbar puncture. He was discharged that evening, but his weeks-long pneumonia seemed to start worsening on Saturday, with further deterioration on Sunday. I had been attempting to keep him at home as much as possible over the prior 3 weeks, however on Sunday, it became quickly apparent that the infection would overwhelm his body if I didn’t take him into hospital urgently for treatment of vomiting, dehydration, confusion and severe pneumonia. He did slightly improve with increased fluids and antibiotics, but a consultation later in the evening with the paediatrician revealed that the regular palliative chemotherapy is no longer holding his leukaemia at bay, and the progression of this relentless, aggressive disease has been rapid. Our distress and grief from that initial suckerpunch was further amplified by our ensuing discussion to alter his emergency code parameters and Goals of Care plan to just ‘comfort care’.

Being discharged home from hospital loses all its triumph and relief when one is bringing their child home to die. The anguish is so very painful, the sadness is so very profound. 

And so, it is home where we are and where we’ll now stay, in this new, most unwelcome phase. A phase whereby we bend to his every need and whim. Where we don’t need to cajole and implore him to “just eat a mouthful”. Where we don’t need to stress about when to take him into hospital in case of deterioration. A phase where every moment is spent either pleading for God to have mercy and take it all away, or begging Him to carry me where my stamina falters. It has been a heartwrenching and profoundly sorrow-filled few days and nights for us, reeling from the sudden realisation of our newly-contracted timeline with our darling son. And given his predominantly bed-bound state, his weakness, lethargy and fragility, we can no longer be ambitious in giving him special “lasts”. Through God’s strength alone can we trudge, with His soul-filling peace replacing our prevailing fear and panic about what’s ahead.

Each night, as Ned now sleeps next to Seth’s and my bed, it is a fresh deep and raw agony to realise we won’t hear that gentle, rhythmic breathing for much longer.

I’ll close this chapter with Ned’s prayer tonight:

“Dear God. 

Thank you for loving me. 

Please help everyone have a good sleep. 

I love you.

See you when I get to heaven.

Amen”

Bitter Sorrow

Dear friends. Late last Thursday morning, on a scheduled Melbourne visit for medical reviews, in an airless hospital room, I found out that Ned’s leukaemia has shockingly made an aggressive comeback and has been rapidly taking over his bone marrow, much to our anguish and horror. The “hurting legs” that he’s been complaining about was not just over-exertion or physio exercises. There are now no further viable treatment options, and we’re going to prioritise quality of life and family time above all else. From naive to numb in an instant. A brutal shock we’ve experienced 5 times now - 3 of which when I was on my own. And the dates and circumstances of each are deeply etched in our minds.

The boys and I flew home immediately Thursday afternoon, and we’ve been trying to process the news since, whilst still maintaining household and family life as normally as possible, and disseminate the news gently. Disclosing this development to Lucy and Ned (separately) was grim, but in some ways, our consistently un-emotive, undetailed presentation of simple facts at every stage along the way has meant that Ned has always taken everything in his stride, and seems now more concerned about having a new intravenous line for occasional chemo to reduce disease burden and alleviate symptoms where possible. Fortunately, other than some fatigue and leg pain, Ned’s still in relatively good spirits currently.

But folks, though we don’t have definitive answers, and your questions are most likely our questions too, we do sadly acknowledge that this is likely the end of a very long, challenging road. And time is not plentiful. We intend to continue the girls at school as usual (and for Ned when he’s not too fatigued), Seth will continue with his part-time work (teacher at the same school) while he can, but I will not yet go back to work as planned. We’re also trying to very hastily plan and re-book Ned’s oft-postponed and keenly-wanted Make-a-Wish beach holiday in Hamilton Island for as soon as possible. 

Whilst we have often found incredible encouragement and community from social media, and we will continue to do updates when we can, we’re going to take a step back for a time in the interests of self-preservation and family time. We genuinely appreciate contact, however may not be able to respond or articulate our needs. In this gap, some dear friends of ours have offered to kindly step up and help coordinate support where possible, and the contact person for this will be Stelle Carmichael: stelle.carmichael@gmail.com. Whilst we’re not actively seeking financial support, we thank those of you who have offered - Seth’s workplace and the kids’ school, Southern Christian College, are holding donations marked ‘Isham’ in their account (Southern Christian College, BSB 633 000, Account 144053006), but please don’t feel obliged.

We are so very heavyhearted that, after his last 18 months of suffering and our family’s displacement… after EVERYTHING… it has come to this, and don’t understand why we couldn’t have spent those 18 months instead making memories. Perhaps God was using that time to remind us, and everyone around us, that time is precious, that each of our children are gifts from Him, and though much of parenting and life is really difficult, it’s so important to really indulge and “be” in those golden moments. Just be. In each moment. We are feeling extremely thankful that we’ve had these last 2 months of blissful ignorance back at home in Tasmania – time that was bought by each of the previous treatments.

Because even now, back in this hopeless darkness and anguish that is somewhat familiar but somewhat altered, there are still moments of joy, of gratitude and of humour, as we tenuously flip between acceptance, denial, and bitter sorrow - especially for his beloved, devoted siblings. Above all, as our dear friend reminded us in church this morning: “The eternal God is our refuge, and underneath are His everlasting arms” (Deuteronomy 33:27). He will walk with us every step of the unknown ahead, comfort us when it’s too hard and grief is overwhelming. And in that knowledge, despite the torment and despairing anguish, right now there is some tangible peace for us both.