It’s the familiarity with which she purposefully strides, mundanely pushing the packed pram through the hospital.

It’s the first-name greetings they both dispense habitually to passing hospital staff in the corridors and baristas in onsite cafes.

It’s the small girl leading the way through the building’s twists and turns with a boldness that exceeds her years.  

It’s the limp with which the slightly taller boy hobbles in a futile attempt to keep up with his little sister, to his despair.

It’s the efficiency with which the adults seem to manage several unruly children whilst negotiating queues and healthcare staff carrying out their jobs.

It’s the short temper and quick irritation they occasionally display when even the little things go wrong.

It’s the deeper skin grooves, the wisps of grey hairs, the sunken, encircled eyes, and the haggard shoulder slump that they both carry wearily.

It’s the over-enthusiastic jokes and games he’s playing with his laughing kids, to cover his fragility.

It’s the unmitigated anxious overreaction she responds with to any casual conversation, joke or perceived threat.

It’s the moments of hesitation in response to usual catch-up questions, followed by answers tinged with defeat and pessimism.

It’s the casualness with which she discusses the surgery or procedure scheduled the next day.

It’s the ringing phone that remains unanswered and the delayed replies because they both struggle to respond to the dreaded questions, or converse with an unbroken voice.

It’s the hardened smiles and slightly pressured speech when talking to other parents, while awaiting the doctor’s call to convey the dreaded test result or distractedly looking at the phone in anticipation. 

It’s glimpsing her, stooped over with face in hands in a hidden corner.

It’s the deadpan, emotionless tone of her voice when discussing the few remaining options and their consequences for her little boy.


It’s now been nearly 4 years of battling this beast, and it’s viciously unrelenting – the constant difficult decisions, battles, broken promises, whilst away from home – both physically and emotionally burdensome. And now we still don’t see an end. The transplant was meant to be it – the end; the cure, but that end-of-tunnel light is now only a vague glow. Every stage has been and is still a rocky, contentious, grueling phase filled with uncertainties and no guarantees. We are sad for all of our children, particularly Ned, and so very shattered – waking each morning, after yet another broken, unsettled night, to get on with the essential motions of getting 4 children ready for the day ahead. It’s a cruel irony that the child who you’ve spent the most one-on-one time with, caring for during their most vulnerable moments; the one in whom you’ve seen the most deep resilience and raw emotion, is the one whose existence you have to constantly grapple with the possible loss of.


We still don’t know what’s ahead, and neither do the doctors. But this we do know: though we are breaking inside at the prospect of our final tentative option possibly falling through, though the grief we may experience is too hard to even contemplate, we know that wherever Ned is or goes, he will be held in loving arms here on earth or with our Father in heaven.