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

Edward Isham