We will never not be sad...

“The reality of grief is the solitude of pain, the feeling that your heart is in pieces, your mind’s a blank, that there is no joy the world can give like that it takes away.” – Lord Byron

Five Years. March 29th has again rolled around with the passing of simply another 12 months, in what feels like an unceasing march away from Ned’s presence in our earthly lives. The gravity of today’s date sits heavy. Our memories and photos are one year older – there will never be any new ones with Ned; we can only look back. It is now five years since our Ned breathed his last in my arms; surrounded by family, he let go and went to Jesus. I begged God for just another breath, whilst simultaneously praying he’d be relieved of pain.

These last 5 years have been a “valley of the shadow of death”. In the shadow of death. For unlike with older generations, when children die, they take away not only the past, but the future as well. This interminably dark valley has also had some glows – a new baby ‘Bringer of Joy’, delights of our other children’s presences and milestones, work satisfactions and progressions, overseas and cross-cultural experiences. We’ve tried to show our other children some of the world since Ned left us – to learn more of their place amongst billions of others, to find beauty in pain, to recapture the wonder. Yet this wound is deep – like a phantom limb; a visceral ache everywhere, every moment each day, and at its worst when we’re together as a family, yet incomplete.

And there is the aloneness.

“Those who have lost children are, in many ways, forever seen as mourners, forever noted for their loss, on the margin – in the community but not entirely of it.” – Sarah Wildman

We crave understanding, but that’s impossible. For I wouldn’t wish this on anyone. Grief of this kind is simultaneously universal and unshareable, with loneliness its inherent point of reference. The oppressiveness cannot be conveyed – being ‘bereaved’ feels too sanitised, too sterile and polite. ‘Bravery’ implies some agency in the matter. We just wanted to keep Ned. We haven’t felt ‘brave’.

We try to memorialise, to remember, to feel; I often try to pinch myself out of our nightmare, to install scaffolding that I can cling to when I feel like I’m crumbling. We will never not be sad. I’ve been listening to and reading a lot over the last 5 years – noting how others navigate, process, articulate grief. I know the wrestle continues despite these written or audio narratives ending.

But surreality is gradually turning to cold, hard reality.

“The acute pain… will weave itself into our lives in a way where threads of our child will be in the tapestry of our lives forever.” – Rob Delaney

Although the heart-ache is pervasive, unbearable grief will evolve into bearable sorrow. I lean on God daily for strength – He carries us; He is “near to the brokenhearted”. This year, Ned’s Heaven Day has aligned with the day Jesus was crucified. His resurrection at Easter shows us that death is not final, and we know that Ned is safe in Jesus’ arms now.  

So for now, we try to ground ourselves in each moment as another year passes. The pain will always be there to return to – we need to hold it side by side with the beauty: God’s wondrous creation, our precious four children here with us, our memories. Not letting one crush or crowd out the other.

A Decade of Ned

His last hospital appointment in Melbourne. The oncologist got straight to the point. “His bone marrow results are not good. The leukaemia has come back…. There is nothing more we can do. Take him home. Love him.”

She’d been prepared for this moment. On the edge of her desk sat pencils and hospital printing paper - its clinically white starkness somewhat representative of the tone of this interaction. The tone of his hospital life thus far. And as he began filling it with dinosaurs, alien creatures, and other figments of his imaginative world, all of the colours swam before my leaking eyes. He turned, laid his hand on my shoulder, and with concerned eyes, said “don’t cry, Mama. It’s ok. Don’t cry.”

This is the type of person our Ned was. He was born 10 years ago today; an unsettled babe, yet, to become a compassionate, kind, thoughtful, sensitive boy. He only grew to be moreso through his interminable suffering. His faith in God was incomprehensible for one so young.

Don’t tell me it’ll be ok because we’ll see him again.

We will. But his is a loss that deserves to be mourned.

His is an absence that jars; the ache still catches my breath. But I have some comfort that he is with Jesus; he is no longer hurting, no longer itching, no longer fatigued and doubled over.

Happy Heavenly Double-Figures Birthday, Neddy Boy. You are so profoundly missed.

10 years of our Ned. Remember him.

“He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away”

~ Revelation 21:4

Grief is a Whole New Language

2 years since we buried you.  

2 years and 6 days since you breathed your last, since I heard your voice, since I kissed the tiny scar on your cheek, since I saw the mirth in your cheeky, blue eyes…

2 years and 6 days of grief - a whole new language.

A dark language that eviscerates every time we learn a new dimension, yet despite its torment and opacity, it’s really hard to make grief obvious to the unsuspecting eye. It’s like that thin veneer of ice quivering over an abyss of inky black, troubled, frigid waters. One can only see the smooth expanse of formed ice. Grief can sink our souls.

But grief can only be borne of love. There can be no grief where there is no love. So I guess the depth of ours bears testament to just how profoundly we loved you, Ned.

“Children who lose parents are orphans; bereaved spouses are widows. But what do you call parents who lose children? It seems telling to me there is no word in our language for our situation. It is unspeakable, and by extension, we are not supposed to exist.” (Jayson Greene, 2016)

Into our darkness now, we have a new tiny light, your littlest sister, Beatrice Jean. Your gentle soul would’ve loved her - you always loved babies. She looks like you. ‘Bringer of joy’, ‘God is gracious’ - a perfect description of her presence for us. Know that we’ll teach her all about you; your presence is evident in this house – the photos, the way your siblings and we talk about you... Even Gilbert looks at your pictures and tells us “Ned is here”. 

Stay close to her, ok? There are many things about life and faith that only you can teach her, and Gilbert, Eleanor and Lucy. They all need you.

Oh Ned. 

All the others are growing up, but you’re still 6. With all your baby teeth. You’d be in grade 3 this year, 9 years old in May. Eleanor’s 6 years old now. You would’ve loved seeing her at school. She sits on the Ned Isham buddy bench often – she makes sure she has her back resting on your name plaque. She claims her favourite colour is red because it was yours, and still cries for you at night. Lucy turned 12 last week. She’s loving high school, is of course keeping herself busy with all the extra activities, and has found some lovely friends. She wishes she could introduce them to her brother, Ned, but instead shows them your photos. She doesn’t like to talk about it all though. Gilbert is typical busy 3-year-old, loves setting up trains just like you, and plays with Eleanor just like you played with her.

Into that bleakness of your absence, we cling to our faith and hope for reunification one day. How apt that your ‘burial day’, April 4th, falls on Easter’s Resurrection Day this year.

2 years on, my heart still doesn’t want to accept that you are no longer with us. But the numbness is starting to thaw, leaving exposed a tangle of pain.

If I’d only I’d known there was only 5 weeks left. If only I’d sat with you longer, told you again how much I loved you, cuddled you more, read you another story, caught more of your uniqueness on camera, asked you more questions and listened longer to your thoughts… If only I remembered more, because my sleep deprivation and stress through the last few years was so severe that my failing brain has wiped many memories. 

For your Dad and me now, there’s sorrow and bitterness seesawing with melancholic peace. The former, for all you endured and the missed normalcy of your childhood; the latter because you are no longer in pain, and you left this earth knowing you were deeply loved - by us and by Jesus.

You are desperately missed. May you keep teaching us, though you are not here with us. May it not take retrospect for us to treasure the moments, show grace and love. May we always, always remember you, your courage and your faith, through the years to come, and use those memories to inspire further kindness and compassion. We will look for you in every moment - may there be innumerable moments full of you.

“Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die.” John 11:25-26

Am I still breathing?

Am I though? And if I am, what kind of rhythm does it have? I’m about to give birth to our fifth child, yet I have lost 3 babies and a beloved 6yo son along the way. It’s a mystery as to how one should hold these juxtaposing feelings in tension…  

Has my body moulded itself around the holes of grief? Or is it still in pieces? Has my brokenness yet started repairing into a Kintsugi-like artwork? Or do people see me as the moth-eaten shadow of the happier person I used to be, tainted with loss? Can they see the weariness borne of dreadfully missing one child in every moment, whilst concurrently trying to love and serve my three, soon to be four, children here on earth? I’ve been told I don’t understand grace, and I’m ‘too negative’; yet, in a culture so unfamiliar and awkward about sitting in uncertainty and discomfort, I feel like there should be no one template of how to do something so unnatural as to grieve a child before their time. 

‘Mourning’ is defined as “the outward signs and rituals associated with sorrow for a person’s death; usually limited in time by social conventions or community expectations”. Whereas ‘grief’ is “the deep and poignant distress caused by bereavement and profound loss”. Unlike a funeral, the Ned-shaped chasm in our lives will not come to an end until we are reunited with him in Heaven. 

This is a bittersweet time for us, awaiting the arrival of another much-anticipated family member – who won’t ever know Ned here on earth. Memories of my last pregnancy at this same gestation cloud my mind – trying to navigate Ned’s intense pre-transplant treatment, Eleanor’s pre-transplant donor work-up, figuring out logistics of who would be with Ned in hospital while I was in labour, all in a different state from our home… This time, to my detriment perhaps, I’ve spent more time working and studying to keep my brain busy and distracted. Though our family has already endured such sorrow and suffered a tragedy, it doesn’t render us immune to further heartbreak and loss - and this weighs heavily on my mind.

So in my incapacity to better articulate where I’m at, I reflect only on these beautiful words below, written by writer, minister and artist, Jan Richardson:

Blessing for the Brokenhearted

‘There is no remedy for love but to love more’ — Henry David Thoreau

Let us agree for now
that we will not say the breaking
makes us stronger

or that it is better to have this pain
than to have done without this love.

Let us promise we will not
tell ourselves time will heal
the wound, when every day
our waking opens it anew.

Perhaps for now it can be enough
to simply marvel at the mystery
of how a heart so broken can go on beating,
as if it were made for precisely this — as if it knows the only cure for love is more of it, 

as if it sees the heart’s sole remedy for breaking is to love still,

as if it trusts that its own persistent pulse is the rhythm of a blessing we cannot begin to fathom
but will save us nonetheless.

~~~~~~

I’m sad more often than not, but I’m not scared. Psalm 23:4 says “though I walk through the valley of the shadow of death, I will fear no evil, for You are with me.” We have not yet made it through that valley. In fact, we are far from it. But as I remind my eldest (and myself) every night, just as God promised the Israelites back in the Old Testament as they fled through desert for 40 years, likely full of uncertainty and fear, though we know not what tomorrow holds – joy or sorrow, contentment or despair – God has assured us that He will be walking beside us. To this I have held, and I continue to cling.

“Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me;

your rod and staff, they comfort me.” Psalm 23:4

Good Friday in the Pandemic

Easter time 2020. What a paradox – rejoicing in freedom, whether through our faith, or by virtue of a long weekend from work, contrasted with the now law-enforced restricted physical freedom. 

I speak from the point of view of both disadvantage and vulnerability. Firstly, whilst I acknowledge our privilege, not being disadvantaged ourselves, I did spend my childhood in a country that will reel from this pandemic’s impact, where I observed extreme disadvantage. Secondly, years of my adult life have been spent parenting a vulnerable, profoundly immunosuppressed child – we’ve lived in the shadow of cancer-induced restrictions, with our ‘freedoms’ curtailed, through no fault of our own (the cause of Ned’s leukaemia has as much to do with us, his parents, as the start of this pandemic has to do with you). 

Having lived the first decade of my life in Congo, I saw most people around me living in service of others, not comfort-seeking or self-indulging, nor looking to blame or argue with anyone about what they didn’t have, or ending relationships over disagreements. Maslow’s hierarchy – ensuring safety, food and health was far more important than arguing about blame and taking pride in being right. As my years in Australia went on, I started noticing I was developing some indifference towards my privilege – a growing apathy about the hot showers I could have at any time, electricity 24/7, clean water I could drink whenever I was thirsty, my ability to drive a car on safe roads, easy access to fresh produce and any groceries at my convenience, expert healthcare within a short drive, good education for our children, ease of travel if we were to decide on a trip, attending church without persecution, access to a clean gym or safe tracks to run on. And then I re-visited Congo, and I was stopped sharply in my tracks, chastened and humbled – these friends of ours had just endured a war, many family members were killed or wounded, their ‘houses’ (mud huts) had been looted or burned, their incomes had ceased, their children were often hungry, or wearing disintegrating clothes and sharing beds with each other, and yet, they were overjoyed to see us, invited us in, fed us, and told us of how God had looked after them, listing all the things they were grateful for. This is how most of the world lives. 

Then having lived most of these last few years at the mercy of cancer, with our child’s need for isolation (either in the high-rise apartment with no outdoors, or in a hospital room) as utmost priority, and our other children’s needs as a close second; our desires, and even necessities have been of distant unimportance. We’ve both had to live a lot of self-denial and deprivation for the sake of our children, with super-imposed study and work for the sake of income, however we have had no resentment towards the child who has cancer, and actually little towards the cancer itself. Why waste emotional energy on anger at a disease? Why get wrapped up in blame that won’t relieve bitterness? I’m not saying this for sympathy because we weren’t always very good at it – in fact, Ned led by miles in humility and selflessness. But let no one tell us that we don’t get it because right now we are comfortable in a warm, secure home with outdoor space – we’re not complaining. We do indeed understand, because this ‘home isolation’ thing, while homeschooling, working and studying amidst chaos, is not foreign to us – we know too well what restricted freedom, physical space, no holidays, no ability to make plans with others and having to lock ourselves away means. And I’m shocked that, though so many Christians uphold the compassion, selflessness and love that Jesus demonstrated through His sacrifice on the cross, on this very day centuries later, I have to reflect on all the self-seeking, outraged and blaming attitudes that I’ve observed over the last few weeks when suddenly there’s some discomfort or impeded freedom. 

Let me tell you, we didn’t ask for cancer – as much as you didn’t ask for coronavirus. Even if you believe it’s someone’s fault, it doesn’t matter now. We’ve been told that it jeopardises the lives of the ‘vulnerable’ – a huge proportion of our community. Our Ned would’ve been included in this group, as are many other kids with cancer – who also live years in and out of isolation. Many, many, many people survive cancer and live great lives, contributing enormously to the world in innumerable ways, but regardless of contribution, no person matters less than another. Right now, one ultimate act of caring for the disadvantaged, the vulnerable, the suffering is to deny oneself, and try to fill gaps from afar for others. 

Social/physical distancing is a proven public health preventative strategy during pandemics – particularly airborne ones. We, as the medical community, are VERY aware of the long-term implications of these measures, with regards to morbidity and mortality from other chronic diseases and poor mental health, loneliness and economical downturn. We know this will be a tough slog for so many, and are trying to think collectively of innovative ways that we can care for our individual patients and our communities. But right now, the imminent threat needs to be addressed with drastic measures. Remember Maslow’s hierarchy? Right now, if basic health is in threat, then our desires in seeking comforts seem excessive, no matter what our ‘rights’ may be.

Not one of the Ten Commandments instructs ‘seek comfort and put yourself first’. Rather we are told to seek God’s Kingdom, love others and put others first. What better way to use this uncannily eerie, disrupted period, while our freedoms are limited? It speaks to me deeply, because no matter what the last few years have held for us, this is still a jarring experience for many, and it is my daily endeavour and prayer - to be aware of and reach out to others in love. Yes, right now is hard, possibly lonely. I know many are enduring inordinate hardship, and my heart bleeds for those living in neglect or danger. But to those who can, I urge you likewise to look outwards – as well as caring for ourselves, love others by prioritising their vulnerabilities; as well as reflecting on our inconveniences, put others first by reaching out to them amidst their isolation and loneliness. 

It is Good Friday. We can surely sit in some discomfort while we reflect on the greater sacrifice and act of love so long ago.

“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 3:16-17

One Year On

Not unfamiliar to us, this current climate.

But unfamiliar altogether. 

Such an eerie, poignant sensation being taken back to the feelings of loneliness, imposed isolation and worry so familiar to those in the ‘oncology world’. So much of our prior 5 years was in physical isolation, distanced from our communities during the trauma. It feels like that cancer-centric life’s bubble of hyper-vigilance and vulnerability has now expanded – very much a trigger for traumatic memories from years of living apart, distanced or quarantined.

‘Three’ by Seth - God walks with our broken selves

Even more eerie that it coincides with March. For after 6 years and 10 months of our lives revolving around Ned, it’s now been one year revolving around his absence – the gaping hole he left. One year of our family struggling to stand back up and recalibrate around his footprint, but without him. One year since, in my arms, our darling Ned breathed his last and went to Jesus.

And after so many repeated blows, year after year, losing Ned here on earth was followed by a year full of further challenges… a year where we lost, we despaired, we hoped, and then we lost so much again – precious lives, health, relationships, many plans and career hopes. All while trying to uphold our children through their grief and consequent behavioural issues, and trying to re-enter the non-oncology world. That wound still freshly gaping, kept being scraped and pried open over and over again – the suffocating heaviness upon waking in the morning, the sudden choke of tears hitting the edge of my cracked voice mid-conversation, the ruminating about what-ifs while trying to go to sleep, the unfairness I feel that our children here have 2 parents with them while Ned has none, the internal anguish I wrestle with in answering questions about how many kids I have, the persisting numbness… I know Seth and the girls are struggling just as much. And we know this sorrow will last all our earthly lives.

I realise, though, that this brokenness and dejection is not exclusive to me right now. Many people have lost so much in the last month. So while we spend today, Ned’s Heaven Day, as a family of six minus one, remembering Ned in all his gentle, insightful, imaginative cheekiness, we’re going to re-focus and trust in Isaiah 41:10 – the verse that has pulled us all through one of our darkest years: “I will strengthen you and help you; I will uphold you with my righteous right hand”. It hasn’t fixed the pain, but in His grace, it has held us. 

19th May 2012 – 29th March 2019. We are so grateful that we got our Ned for those years, but oh how we ache. And each night we pray afresh “take care of him, dear God; please look after our Ned”.

Some snapshots of Ned, played at his funeral, thanks to Joe Looker, and Mark and Lisa Kuilenburg.

“My grace is sufficient for you, for my power is made perfect in weakness.” 2 Corinthians 12:9

31.12.2019

The end of the worst year of our lives so far. How different last NYE was, filled with hope.  

It was a year that began in triumph, with four children, and the prospect of beginning our onerous recovery from years of hardship.

But it tragically became a year with the worse horror of unexpectedly palliating and saying goodbye to one of our precious children. 

It’s not that we’ve been “hit by a bus”, regained our feet, only to be hit by another bus. No, we never even got to stand up in between buses in the first place – for years. 

Many would assume that we’re looking forward to turning the corner into 2020, and leaving the ghastly 2019 behind. 

But as I sat on our staircase consoling my weeping eldest daughter this evening, who doesn’t want to leave Ned behind in 2019 and enter a new year without him, who wants time to stand still just before the clock ticks over, it became bleakly evident that the relentlessly passing time just aggravates the deep ache. It’s the physical planet’s ambivalence to our emotional standstill. And each moment marching by represents more and more distance from our previous reality, from Ned’s existence, from his last touch, giggle, cuddle, and conversation. Distance from the traumatic 2019 will not ease the torment. 

So onward, into a new, unwanted year we must go, as a family minus one. A new year that Ned will never be a part of. History being written without one of our children. Like changing trains, and leaving one child behind on the train platform.

Yet as I reflect over the course of today, I’m also being inundated with updates about the terrifying fire attack unfolding on mainland Australia, and I attempt to put myself in the shoes of those caught up in such horror – today will be a day etched in their memory for whatever awful reason, and their steep roads of processing the trauma, of working towards recovery, begin today. 

And so, as we enter a new year, leaving a year of terrible devastation and sorrow behind, perhaps fearfully anticipating what may lie ahead, as we draw in close to the many families who have also lost a member, or those who have endured challenging years, perhaps the one thing I will ask of each reader is to show grace: unmerited, undeserved kindness. I understand from personal experience how demoralising and undermining it can be when there is no grace, especially to the vulnerable, or those beset by hardship and strife. 

Remember that we are fallen, we make mistakes, we do wrong, we are misunderstood and we misunderstand, we are each imperfect. Please, if there’s anything you take from the way Ned lived his life, if there’s anything that his cheeky smile reminds you of, let it be to always give others the benefit of the doubt.

Please, whatever background and beliefs you have, just show grace.

“Let us then with confidence draw near to the throne of grace, that we may receive mercy and

find grace to help in time of need.”

- Hebrews 4:16

Dissonance

Reflections from your grieving Mother

I regret…

• not savouring every single moment that you were content and stable with my undivided attention.

• pushing you to walk when your legs were tired and painful, not realising that growing leukaemia was responsible, rather than just muscle weakness and deconditioning.

• tense dinnertimes, trying earnestly (and often despairingly) to get you to just eat one mouthful, while the other kids watched on – pleasant mealtimes were few and far between.

• encouraging more independence and proficiency in certain tasks when you most just needed our help.

• often letting other tasks or children get in the way before I came to your aid, gave you a cuddle or tended to your care.

• allowing my over-tired frustrations bubble to the surface when you woke baby Gilbert or me for the umpteenth time every night in Transplant, because you were miserable and uncomfortable.

• having to say ‘goodbye’ at the end of my half week in Transplant when it was Daddy’s turn in hospital, and I had to go back to the flat with the others, when all you wanted was another Mama cuddle.

• not being able to give you more play dates with your beloved friends.

• profoundly: that you never got to have your long-awaited Make-A-Wish Hamilton Island beach holiday.

• never being able to give you the opportunity to ring the End-of-Treatment bell at any hospital, because you never got to the end of any treatment.

• the many times I couldn’t fix your pain, discomfort or tremendous itch, and couldn’t take your agony from you.

• that you never got to have your well-planned, much-anticipated 7th ‘superhero’ birthday party with your little group of friends in your backyard at home.

• that you had to miss out on so many swimming adventures because of your hated Hickman central line.

• that you never got your booked Melbourne-Tasmania overnight ferry trip with Daddy because you became too unwell at the last minute both times.

• having to take you away from your beloved friends and community for so long while we were in Melbourne and Seattle.

• that you didn’t get to experience the joy of losing your first tooth.

• not helping you have more cuddles with your adored guinea pig, Tommy.

• getting cross at you and Lucy for talking in bed after lights-out.

• that I allowed so much of your precious time in your remaining 5 palliative weeks of life to be wasted waiting in clinic.

• that you didn’t get to say goodbye to your best friend.

• not reading you more books, not playing more games, not having more endless cuddles.

• not taking more videos and photos of everyday life.

• that you’re not around to watch your adored baby brother grow – to keep playing cars with him, to ride your bikes together, and to listen to and rejoice in him learning words and songs.

I’m thankful that… 

• we exhausted every evidence-based therapeutic option, we researched every possible clinical trial, and we traveled worldwide in pursuit of a treatment that would kill your cancer.

• I allowed you to decide when you felt up to going to school, and when you wanted to stay home, during your last few weeks.

• we let you eat whatever you felt like you could stomach towards the end – even if it meant only a few banana lollies for lunch.

• we carried you upstairs, helped you dress, and used the pram when we could see that you tiredness was overwhelming you.

• we still went to the effort of taking our family up the east coast of Tasmania for a few days of a replacement Make-A-Wish holiday.

• I skipped early-morning running or gym because you’d crept into our room before sunrise, and we got to snuggle in my warm bed.

• I took the time to really feel your breaths on my arms, indulge in the warmth of your skin next to mine, and the softness of your hair on my cheek.

• you got so many special Daddy outdoor adventures in your early years, and so much one-on-one creative art time with him in hospital.

• you had Gilbert to keep you company through Transplant Ward isolation.

• we have kept your many drawings, sculptures and creations, your cards, your hair that you lost once after chemo, your clothes, your special toys, and your teddies.

• we read so many books, played so many games, and had SO many beautiful cuddles.

• we took so many videos and photos of everyday life.

• we let you know just HOW much we adore you.

• I talked to you about going to Heaven many times, and how much God loves you.

• we were part of a church community that you loved, who upheld us and interceded for us when we were breaking

• you felt safe and loved in my arms at the end, with Daddy beside us.

• you stayed with us that morning until your cherished sisters were able to say goodbye.

• you weren’t scared of dying; you knew you were going to Heaven.

• we have a Father who knows what suffering is, and loves you more than we could imagine.

• you are no longer suffering.

• we got you, our Ned, from the 19th May 2012 until the 29th March 2019.

“He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” - Revelation 21:4