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

Edward Isham