There is a saying “A parent should never bury their child”, and it was one I hoped would never ever be true for us. But here we are, and it’s incredibly sad. Yes, this is a time to mourn, but it’s more importantly a time to celebrate Ned and the amazing things about him, the things that brought us all joy. He had a short life, but an epic impact! As this huge crowd at this very event and the 50+ video livestreams across the world are testament.

I want to tell you about Ned by telling you about the things that made him who he was. I’ve grouped these things into categories, the first, as it should be, is:

Ned the Artist

The first time I taught Ned this word, he said “art-arse” instead (for those of us who’ve been to Arts School you’ll probably find this especially funny).

As an artist myself, I loved how much Ned enjoyed art. It was something special we both shared. And throughout both his transplants and many times in between, art-making, on his own or with me, was of great therapeutic value for both of us. And he was good at it! He was uninhibited, imaginative, creative and willing to try new things. He was careful: placing and choosing colours or shapes and he always knew how he wanted it to be, but was rarely frustrated if it didn’t always turn out the way he wanted.

He was visionary, so many big artistic ideas and so many projects (like me). Many of them we got to work on together, sadly not all completed (but then I remind myself he liked the process as much as the outcome). Ned often dreamed up all manner of elaborate creatures, like cardboard crocodiles with wheels for feet! I kept thinking he had the potential to become a better (and probably more success) artist then I’d ever be.

His Duplo creations were another expression of his creativity and imagination, making a swathe of amazing things. He’s often ask me to create certain aspects, like ships of big elaborate trucks to add into his games. I must confess I whiled away many hours of my home Dad days playing Duplo with him.

Being a fan of superheroes, he often liked to create Duplo versions of them - making pilots into Captain America or red haired characters into Black Widow. And he’d always check the details of each superhero. He’d often tease his mum about her muddling of the DC and Marvel worlds.

In addition to this he also loved to create the ‘animal versions’ of the superheroes; for example he thought Hulk’s animal would be a crocodile, or Iron Man would be a rhino and Captain America as a bear, and you can work out what he thought Black Panther, Spiderman, Falcon, etc, would be in animal form.

Ned loved to make things for others, and while he’d often say “Daddy lets make something together”, more often he’d be asking “Daddy, can we make something for Lucy, Eleanor or Mummy?”. He was especially prolific with card making, often with special messages to accompany his wonderful drawings.

Ned the Affectionate Gentleman

Ned was such a gentle soul; he loved gently touching babies and cuddling them. He was so excited when we told him about Emily being pregnant with Eleanor and Gilbert.

We often shared ‘Highlights’ around the dinner table, and on one occasion Ned asked Emily’s pregnant belly “baby highlight?”

“Probably when I ate chocolate” Emily replied.

Ned often asked how we were going, and at his most tender vulnerable moments, as I helped him with the most intimate of physical tasks, he would whisper in my ear “I love you Daddy”. Words I treasure so much.

Ned had a gentle, unassuming manner and captivated the hearts of so many. His smile, laughter and charm brought joy to the many staff that cared for him over the years. He always spoke confidently but politely to them, and always thanked them for looking after him.

Ned loved to give cuddles: as soon as he knew someone was a friend, he’d give them a hug, often instead of high fives or handshakes (a man after my own heart).

Ned the Comedian

Ned always loved a good joke, and while many were poo and fart jokes (I blame this entirely on the Clown Doctors and Starlight Captains), he also loved unusual jokes. His favourite was:

“Why can’t Trev climb a tree?”

“Because Trev is a tractor.”

He developed his own tree based joke: “What kind of paddy lives in a tree?”

“A Pademelon.”

Another classic was once driving home from hospital, we passed a car with its alarm going off. He asked “what animal does that car need, Dad?”

“They need a llama!”

At a young age, Ned also developed, what we call “the funny face”, a hilarious wide-mouthed, wide-eyed crazy face that had us all in stiches of laughter (you’ll see it in the montage).

Ned also loved slapstick comedy, either laughing and interacting with my impersonations or joining in on jokes with me, like pulling his trousers up to create ‘Harry High-pants’ when I dressed him. He’d then go and proudly show Emily, as he knew she wouldn’t be impressed (or at least pretend not to be impressed), and burst into laughter at her eyeroll. He also loved pulling faces with me to take selfies and save them as Emily’s phone wallpaper or home-screen.

Ned the Musician

Ned loved music; he had beautiful voice (sometimes I’d hear him singing to himself), a good sense of rhythm and thoroughly enjoyed listening to many varieties. He loved going to Mainly Music when he was younger enthusiastically joining in on the dancing and singing.

Ned the Fashion enthusiast

Ned always had very particular ideas of what he wanted to wear, and one of his favourites was his ‘Serious Shirt’ (blue-collared polo pictured above). But he also loved his Marvel shorts, from a friend in Seattle, which he is dressed in now. He often wanted to match me, but also liked to match his siblings or significant others

Ned liked to wear dress-ups out, even once sweltering in a spaceman suit to Bunnings. Like so many other things he taught me, Ned helped me to be less inhibited, to embrace my inner child, to join in his imaginative world unencumbered by the grown up world. He embraced my dagginess but also loved it when I dressed up. If Emily and I ever were going somewhere formal he’d make compliments about my suit. He would’ve loved this suit, which I bought for today.

Ned the Chef

Ned loved to cook (especially cracking eggs), but hated to eat. The only exception was when he was on high-dose steroids and developed very particular cravings: salt and vinegar crackers and cottage cheese, or sausage rolls in earlier years.

Another favourite of Ned’s were Bunnings’ sausages - he always checked what weekday it was to see if they’d be available. He also loved having pikelets at the Maxwells’ - somehow they always tasted better then the ones I made at home.

And finally I have to mention the beloved ‘Quiche Café’ (aka Penny’s Bakery next to Woolworths) - their mini spinach quiches were one of the few things he’d eat without coaxing.

Ned the Sportsman

Quite unlike his father, Ned showed impressive ability at throwing, kicking balls, and great balance on his bike, even teaching Eleanor how to use hers. He loved riding it down the hill fearlessly (no care for the expensive medication strapped to his back)

And he had big plans for our land including a flying fox, obstacle course and major extensions to the new cubby house - all to satisfy his adventurous spirit.

Ned the Park Ranger and Adventurer

Ned loved animals - he always wanted to catch the lizards outside (lizards were his favourite animal), enjoyed watching the wallabies and feeding the echidnas at Bonorong and on our land; he loved dogs, loved the sheep and chooks at my parents’ place. And he really enjoyed the night walks to see possums with the Richardsons.

He really loved the bush, either when he visited his grandparents’ place (where he loved to climb trees, pick blackberries and build cubby-houses") or at our new home, where we finally got to live from the beginning of this year. We enjoyed quite a few walks around the property, and he loved to sit and cuddle his guinea pigs, and laugh about how fat his Tommy is. We’re so glad he made it home.

He loved going out on adventures walks or drives in the car, whether it was to the Tip Shop, supermarket, hardware store or even just to explore the new building works around Kingston.

When Ned was younger he’d ask daily “Where are we going today, Dad?”, often wanting it to be the Tip Shop or the hardware store.

Sometimes I’d ask this question as a way of making trips to hospital more exciting, and I’d continue the good-humoured banter right into theatre where I’d joke about it being a show put on just for him with all the bright lights, cast and crew, to try and make it more interesting.

Ned the Naturalist

Ned loved to be nude, he especially enjoyed a nude run around the kitchen, laughing and dancing all the way. Often his laughing and giggling siblings would join you in this nudist display.

Ned the Firefighter Paramedic

Ned knew the different siren noises. He hated bush fires and fire alarms, but he loved to watch me light the wood fire in our home and enjoyed sitting watching the flames burning and getting dressed after a bath by the fire, and every time I light it now, I remember him. Ned especially loved the special superhero firefighter day that was put on for him as an early birthday present, and aspired to be a driver of all emergency vehicles

Ned the Communicator

We were worried about his language development in early years, but the time in hospital with so much one-on-one time meant there was a rapid improvement. Ned entered easily into conversations, accepting people into his confidence and loved to talk about his family. Ned had quite a loud voice, especially noticeable when yelling on video calls with overseas friends or relatives. Ned had some very distinct words (and maybe you’d like to adopt a few of these to remember him by):

From Earlier years:

“Soop soop, ooh ooh ah ah” (super-monkey)
“Soop soop, mark mark” (supermarket)
Tell himself to “settle down” to calm himself when he was panicked

More recently (many of which we still use to remember Ned):

“Scuffle” (whisk) eggs
“Wrinkles” = sprinkles
“bot-bot” = bottom
“upf” = up
“metal” = medal
Farewelling someone: “See you later Alligator, don’t forgot your toilet paper”

The Brother

Ned was a great brother; he loved his sisters and brother so much - his siblings whom he so gently nurtured and so beautifully cared for: Lucy, the big sister who so longed for and prayed for a baby brother, and who loved and cared for Ned from first to last cuddles. Eleanor his playmate and young padawan, eagerly soaking up what he had to tell her and teach her. And Gilbert, his companion especially through some of the darkest times. (Lucy has a few stories she’ll hopefully share after me.)

The Son

I am so privileged to be Ned’s Dad. I’ve learned so much, and been so inspired to be the best I can be. He embraced my inner 6yo boy as playmate, companion and fellow creator. And he looked up to me as his devoted Dad, guide, mentor, comfort and Marvel expert.

While now here on earth I only have one son, I will always be the father of two sons. But now my oldest son is free from pain and more alive then he ever was here on earth. And I hope he’s up there making sculptures, cooking meals, playing with animals, throwing and catching, telling jokes and hopefully getting all his questions answered as he hangs out with his Heavenly Father.

Edward Isham