We know that Jesus understands suffering and weeps with us

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From Luke’s Journal 2021 | Dying & Palliative Care | Vol.26 No.2

“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?”

I tell her that. I tell my other children that. But in reality, I’m also telling myself that. Because I still don’t understand why I had to palliate my 6-year-old son, who had already shown such resilience in enduring cancer treatment after treatment for nearly 5 years. 

Our second child, Edward (Ned), was born into our family on the 19th May 2012 – a healthy, thriving infant, albeit one who never slept. We struggled with excessive sleep deprivation in that first year, but after that, things started to improve. However in the latter half of his second year, his appetite started to wane, his sleep worsened again, and was becoming distressed easily particularly when walking. Just after his second birthday, at the end of a busy afternoon playing in a playground, he refused to stand or walk, and reverted to crawling around. I thought he’d had an unwitnessed fall at the playground perhaps, but then began the carousel of scans, and endless GP, orthopaedic and paediatrician appointments. Six weeks later, when I was 11 weeks pregnant with our third child, after a morning full of scans and blood tests, my husband and I were confronted with a teary paediatrician and a computer screen showing a blood panel indicative of leukaemia. 

“My husband and I were confronted with a teary paediatrician and a computer screen showing a blood panel indicative of leukaemia.”

I was, at the time, studying for my GP specialty medical exams, and leukaemia had barely featured on my radar of differential diagnoses. It floored us. We not only had to process our child having cancer, and convey that to our five-year-old Lucy, our extended family and the rest of our community, but we had to grieve the life we had planned and carved out in pursuit of what we thought God was calling us to – overseas missionary work. We were now tethered to a tertiary hospital in Tasmania, or at least Australia, for the next three and a half years at least. The biggest challenge, of course, was keeping our marriage intact and being grace-filled, patient, stable, loving parents to our two – nearly three – children over the coming years of intense treatment … as we soon found out … 

The nearly five years of cancer treatment ahead, during which two more precious children were born to us, necessitated two bone marrow transplants and 18 months away from home – either interstate (Melbourne) or overseas (Seattle). I can’t even begin to convey the profound depths of devastation with every bad result and leukaemia relapse, or the ecstatic highs where God, in His infinite mercy, provided just what we needed (I did keep a blog: www.edwardisham.com).

Our family lived a life of hyper-vigilance, uncertainty and separation – between hospital and our two-bedroom accommodation nearby. Our utterly depleted selves were sustained only by the prayers of many, the kindness of strangers, local friends, extended family and a new church we started attending; solely relying on God’s strength to put each foot in front of the other, day after day, despite the seemingly-constant bad news and developing PTSD. So many small victories, followed by blows – relapse after relapse after relapse. 

Ned’s second bone marrow transplant was his last remaining chance. It was gruelling for us all, so you can imagine the triumph and celebrations upon its end and our return home at Christmas-time 2018, after 18 months away. We had fought valiantly, he had battled courageously, and we were victoriously given the prize of his life… or so we thought …

But in February 2019, on a return trip to Melbourne for numerous medical reviews, Ned’s leukaemia was found to have returned aggressively – the fourth time. Our oncologist grimly said to me, “That’s it. We have no more options. You need to take him home.”

“Palliating your own child is a truly surreal daily existence; made even more so in our case because I’m a doctor as well as a Mum.”

Palliating your own child is a truly surreal daily existence; made even more so in our case because I’m a doctor as well as a Mum – a vocation primarily focused on saving lives. It feels almost like an alternate reality – one in which 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. Where ‘trust in God in each moment’ is crystallised, for we know not which moment our son’s life will end. 

Everything’s turned on its head when you’re no longer trying to save your child, but merely keeping him comfortable, showing him as much love as possible until he returns to his Father. How do we prepare ourselves for this? How do we prepare our other children for this? Most importantly, how do we convey to our 6-year-old son that his life is going to end … and soon … 

We had five weeks with Ned between us learning about his fourth relapse and his death. They should have been glorious, and in some ways they were – we had him alive with us, and oh how I long to have that time back. But we were shocked and grieving, not knowing what was around the corner, not knowing the timeline. With each short hospital visit or admission, we would wonder – is this real? Surely the doctors got it wrong? But just when we thought the chemo was holding his leukaemia at bay, he was admitted for pneumonia, and a bone marrow aspirate showed that it had in fact proliferated with a vengeance.
And so … we took him home. 

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. 

Back home to a new, most unwelcome phase in a world of uncertainty. A phase whereby we bent to his every need and whim. Where we didn’t need to cajole and implore him to “just eat a mouthful”. Where we didn’t need to stress about when to take him into hospital in case of deterioration. A phase where every moment was spent either pleading for God to have mercy and take it all away, or begging Him to carry me where my stamina faltered. It was a heart-wrenching 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 could no longer be ambitious in giving him special “lasts”. Through God’s strength alone we trudged, with His soul-filling peace replacing our prevailing fear and panic about what’s ahead. He alone was our Rock amidst the sea of debilitating uncertainty. 

But it turned out our son was better prepared for his death than any of us were anyway … 

Not knowing the end was so nigh, Ned prayed this prayer the night 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”

The rest of us have been left brokenhearted, to carry on since the 29th March 2019. 

It’s been two years since he left us. We have a new child in the family – two-month-old Beatrice Jean – her name labeling her as a ‘bringer of joy’, and reminding us that God is gracious. She doesn’t in any way replace our Ned, and though we rejoice in her being, we continue to mourn with an all-consuming heartache, crying out to God in agony, raging and pleading with Him for answers. 

We lament at everything that’s gone against our wishes and the scars we bear. But while having faith doesn’t make the pain hurt any less, it does allow us to see a God who’s working out His plans to put an end to the evil and suffering in this world.

We know that Jesus understands suffering, sees our pain, and weeps with us, and it is by His grace alone that we continue on, eagerly anticipating the day when we’ll be reunited once more with our Ned.

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Blessing for the Brokenhearted

by Jan Richardson

‘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.

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