And in the end

Saying goodbye to my brother

Aug 09, 2024

I was sitting in an Invercargill cafe when my mother shared a story which brought me to tears a day later.

We had just come from Southland Hospital to see my youngest brother, who was being kept alive due to a series of tubes, machines and health professionals.

It was at that cafe where mum ordered the soup of the day, my brother a cheese roll, which according to the menu ‘David Hasselhoff voted this as his favourite cheese roll in Invercargill’, and I had scrambled eggs.

That wasn’t really important, but I’m a sucker for details, and that included being served by a lovely Down syndrome woman.

She wanted to know my oldest brother’s name, and we all introduced ourselves, it was a nice interaction in what had been a largely sad day.

That’s when mum told us the story, almost distantly, and not really directed at either of us.

It was in 1980, not long after Tim was born when she visited another family with a newborn.

A proud mum holding her youngest of three, she was asked if she wanted to hold a ‘normal baby’.

“I cried all the way home,” she said.

That got me, and it was on my mind as I drove the two hours back to Dunedin playing a random selection of songs from The Beatles, my brother’s favourite band. I hadn’t purposely listened to the Fab Four for years, but knew every song by osmosis - thanks to my brother.

“"Little darlin', it's been a long, cold lonely winter, little darlin', it feels like years since it's been here, here comes the sun."

When Tim was born, almost 44-years ago, I remembered getting a plastic machine gun, and my older brother a plastic rifle, who immediately forced a swap with me.

And yes, I held a grudge for him for years over it.

That day we stayed at a neighbour’s house, and we later went to see him at the Winton Maternity Centre.

Photos show us holding a toy car in each hand, wearing matching brown jerseys and huge smiles. My mum, who was 32, and my dad, a few years older, are beaming.

If she was ever upset, I never saw it. It took a few tests and days to determine that Tim was indeed Down syndrome.

That didn’t mean anything to me, he was perfect. I now had a younger brother, who I could now boss around (spoiler alert: years later I found out about how stubborn a Down syndrome brother could be).

“There are places I remember - all my life, though some have changed. Some forever, not for better, some have gone and some remain.”

I never noticed the people who crossed the street rather than peer in the pram as we walked around the streets of our small town.

I don’t really know why we moved to the big smoke, well, Invercargill some 30kms down the road.

My parents bought a big old house on one of the few hills in the flat-as-a-pancake city. It offered views of the Takitimu mountains towards the north, and Bluff and Stewart Island to the south.

But Tim and I had a view of the driveway from the downstairs bedroom we shared together for some of the eighties.

I can remember our orange bedspreads, his Kermit the Frog toy, and his annoying habit of climbing into my bed and opening my eyelids to see if I was awake.

“You may say I’m a dreamer. But I’m not the only one.”

It was in that bed that I would read him stories, Spot, Dr Seuss, and Mr Men, often inscribed with a message from our wonderful grandma, and where I would test him on the alphabet.

I spent hours teaching him how to read, but for some reason he only ever wrote in block capitals. His notes over the years often looked like the messages of a serial killer, including cryptic messages of lyrics.

“SITTING ON A CORNFLAKE, WAITING FOR THE VAN TO COME.”
Tim went to a local kindergarten down the road, and then to Ruru School, which was for kids with special education needs. As an aside I thought that name, ‘Ruru’ was the Māori name for the kids who needed special education. The things we remember.

That was reinforced in the playground of my local school, which years later was closed by Trevor Mallard who also forced the closure of my intermediate school. On its expansive grass field, where you would always smell the meat works if it was a northerly, you would always hear ‘Ruru’, if someone did something wrong.

‘Mongol’ was another.

I can’t blame Tim for my first ever fight, but I can blame the kid who said my brother was a ‘Mongol’.

I can still see his smug face before I punched him in the nose, leaving him bleeding and crying, and me with a sore hand, and also crying.

#noregrets.

It can’t have been easier for Tim when he was mainstreamed a few years later, but I only recall him thriving at primary school, as he left in his taxi.

At his funeral service last Thursday, mum spoke first. I wasn’t sure if she was going to do it, but she delivered a heartfelt eulogy to “my wee gentleman”.

That included recalling that Tim would read his notebook entries from the teachers on that taxi ride home, and if it was bad he would simply rip them out and shove them down the side of his seat.

“Blackbird singing in the dead of night. Take these broken wings and learn to fly
All your life. You were only waiting for this moment to arise. (You were only waiting for this moment to arise).”

I don’t ever remember him having a tantrum, he was always good natured and kind, and was once even cast as Jesus in the Christmas play at our local Sunday School.

Shout out to the Presbyterians!

But he wasn’t quite the little Jesus. My older brother reminded me of when our neighbours called us to let us know that Tim was dangling off the TV aerial from the roof of our two storey house.

He once painted dad’s white car with brown house paint, but rather than receive the punishment we would get, he got a photo in the family album.

DOUBLE. BLOODY. STANDARDS.

I remember when he pulled the handbrake from dad’s car as it slowly rolled towards the Oreti River - with him inside it - before he was rescued from certain death.

Years later, just after the 9/11 attacks, he was stopped at airport security in Queenstown, as we were heading towards my cousin’s wedding in Wellington.

They patted him down and he was found with a large pair of fabric scissors. We just died, and still have no idea why he was taking them.

“Two of us riding nowhere. Spending someone's hard-earned pay. You and me Sunday driving, not arriving on our way back home.”

When I think of my brother I just think about his love of music, particularly The Beatles.

It started with their earlier poppy stuff, Love Me Do, I Want to Hold Your Hand, that sort of thing. The older he got the more he deep-dived into their more experimental records.

“Turn off your mind, relax and float downstream. It is not dying. It is not dying.”

He would write pages of notes, ALWAYS IN BLOCK CAPITALS, about The Beatles, their songs/lyrics, solo careers, and some of their deaths.

It really was his magnificent obsession.

His room in our old house on the hill was covered in Beatles’ posters, and I can still hear Paul McCartney’s bass lines reverberate through the walls whenever returning from holidays.

I remember mum calling me about Tim, just days after my brother and I left for university. Turns out he was giving her the silent treatment after we left home.

Days turned into months, months turned into years.

“I read the news today, oh boy. About a lucky man who made the grade. And though the news was rather sad.”

He was diagnosed as being an elective mute, but to my older brother and I he was just being a stubborn little shit.

I remember our first trip home from university when we held him down, tickled him and gave him dead arms so he would speak to mum.

“FUCK YOU,” he said through gritted teeth.

He would chat to mum no problem on the phone, but stay quiet if she was in the room.

Inevitably he would potter downstairs before disappearing upstairs to listen to music and to write his notes.

The self-imposed silence led him to develop a few quirks. One of his favourite things was to walk to a dairy to buy a Lotto ticket and TV Guide each week, but that regular journey ended when he decided to steal SIX copies of the same TV Guide.

In recent years he had lived in a supported environment with some others at a Pact house in Invercargill.

He loved it there, had a new lease of life and was becoming more like his previous self.

My family was looking forward to watching him compete in the Special Olympics in Dunedin later this year.

But his death, although unexpected, came fast.

He simply choked on some food, and was without oxygen for 20 minutes, before paramedics were able to revive him.

Mum was there when he was taken by ambulance to Southland Hospital, and was there when her wee gentlemen took his last breath three days later.

My brother taught me that life isn’t linear.

He never had a girlfriend, never got married, never had kids.

His wordly possessions, which consisted of clothes, books, CDs and albums, could almost fit in a car boot.

Tim didn’t hate anyone, was never in a fight, never bullied anyone online, never expressed jealousy, never called people names.

One in a 1000 babies are born with Down Syndrome, a genetic disorder caused when abnormal cell division results in an extra full or partial copy of chromosome 21.

When I travelled throughout Europe, the Middle East and later Asia, the sight of a person with Down syndrome would always make me smile.

They would look more like Tim than myself or my older brother ever did.

Apart from his brilliant green eyes.

Those eyes were shut when I last saw him in hospital.

I took an AirPod out of my pocket and put it in his ear.

I played some of his favourite Beatles’ songs, as I wept for my brother.

‘And in the end the love you take is equal to the love you make'