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Sumner Beach holds a special place in Simon Barnett’s heart. A romantic spot that he and his wife Jodi loved escaping to - the Pacific breeze a tonic.
A few weeks ago, on the advice of a doctor, he made a rare venture out of the house, to the beach - “I stupidly went on my own” - to allow himself some fresh air.
Barnett spends hours each day at Jodi’s side, bathing and feeding her at their home in Christchurch. Sleep has sometimes come sporadically over the past five-and-a-half years. He’s up by 4am most days.
As he hopped out of the car at Sumner, the first passerby recognised him immediately. She was on a bicycle and circled back.
"This very well-meaning, very kind person said: 'You’re that guy on the TV’. I said ‘yeah’, trying to be upbeat.
“The first thing she asks is, ‘How’s your wife?’ Everybody says that to me, and I’ve always been, ‘Oh, she’s doing really well, she’s going really well’ because she had been.
“But this time I said, ‘She’s not doing that well’. I just burst into tears, and I said, ‘You’re going to have to forgive me, but I’m going to have to press on’.
“She was very sweet. I walked on another 20 metres and another couple said, ‘Oh, you’re that guy – how’s your wife?’
“I started to cry again and thought this is not going to work for me. I basically broke into a canter, got back to the car, and just dissolved into tears.
“It was like a movie. I’m sitting in the car in tears and just thinking, ‘Oh, my gosh, I can’t breathe’.”
As Barnett reveals today, the family has been told by doctors that their beloved Jodi, 61, the mother of their four daughters, and matriarch of the family, has been given just weeks to live.
Barnett has invited me into their Christchurch home to tell Jodi’s and the family’s story, to thank the thousands of people who have sent messages and prayers of love and support; and to pay tribute to his “perfect” soulmate and “hero”.
As he sits on a couch in the lounge, below a striking, wall-dominating photographic image of Mt Aspiring, Barnett is tearful as he pays tribute to the love of his life.
In the next room, one of the couple’s four daughters, Bella, takes over lunchtime duties, feeding homemade soup to Jodi.
Bella and her three sisters, Samantha, Sophie and Lily, are incredibly closeknit. They all live nearby and, along with Barnett – they describe their dad as the “backbone” of the family – have played a huge role in caring for Jodi.
As I’m welcomed into the family home, Simon and Bella introduce me to Jodi. She briefly opens her eyes. It is raw and heart-wrenching, a special moment in a household of love.
Barnett dabs a tissue at his eyes while speaking openly and articulately of his love for Jodi, and an inescapable nightmare.
He says he wants to be strong “but I’m pretty fragile”.
Fragility and strength, good news and bad have come in waves since April 2018 when Jodi suffered a horrific seizure at home and was rushed to hospital.
Through four brain operations, as well as radiation and chemotherapy treatment, the family’s hope and faith have remained steadfast.
Over the years there has been encouraging news.
Not to the point, Barnett says, where the experts will say “Jodes is going to get through this … but encouraging to say she’s tracking well, she’s exceeding all our expectations”.
But now there is a realisation. It is a matter of time.
A palliative care doctor visited recently and was frank. Barnett came off air from his Newstalk ZB Afternoons show straight away.
“She said, ‘We’ve always known, Simon. I think you need to understand that,’ – her words – ‘your wife is dying’.
“It was very confronting. I just sobbed.”
While faith and a belief in God continue to form a rock-solid foundation for the family, “there was always that sense of the Grim Reaper just there.”
He had first spotted the striking brunette at the Les Mills gym, during aerobic classes.
“I just remember thinking this girl was impossibly beautiful not just physically – she was clearly that. But there was just something that radiated from her.”
Back then, he was hosting the TVNZ children’s show What Now.
“So I was like big time,” he jokes.
But, sadly for him, “she had never heard of What Now, never seen What Now…!”
While he was filming a segment for the show on the Mt Hutt skifield, he saw someone struggling on the Poma lift, and recognised her as the woman from the gym.
“She just happened to be there that day, by chance, and she was quite possibly the world’s worst skier.
“I was possibly the second worst, although I pretended I was immensely capable.
“She fell off the Poma lift and the whole lift came to a standstill. I saw this and I thought ‘That’s the girl from the gym!’”
He scrambled down the mountainside on skis, not knowing how to stop himself properly.
“I said, ‘Would you like a hand?’, which is patently ridiculous for me, given that I can’t really ski.
“She said ‘That would be really good, please’. I got her up and that just started it. She was jaw-droppingly kind from that moment.
“Every time I was in her company, I just felt so much better.”
Simon was 21 at the time, Jodi, 26.
On a first date, he packed a champagne picnic and took her up Scarborough Hill, overlooking the Christchurch lights and Pacific Ocean.
Jodi told Simon she couldn’t drink alcohol – a genetic issue causes an asthma-like reaction.
One little sip of champagne wouldn’t hurt, suggested Barnett. She relented.
“Then she was bright red in the face ... she was breathless and I’m like, ‘Oh my gosh, she’s going to pass out in the car’.
“I just raced her home, basically pushed her out the door and said, ‘Thanks. It’s been a lot of fun, I’ll give you a call!’,” Barnett laughs. “That was our first date.”
Within weeks he knew he’d found The One. They were married within three years.
“I just want to spend the rest of my life with this person. I’ve never stopped thinking that, after 32 years of marriage.”
“I think men have this different need when it comes to relationships.
“Women want to be involved; men want to be adored. She just adored me … it was inexplicable because everybody used to say to me, ‘gee, you’re punching’, and I kind of knew it.”
Jodi, he says, has been his “greatest cheerleader”, a soulmate who “has never wavered”.
He was always the best television presenter, best radio host, best father, and best husband.
She was fully behind him for Dancing with the Stars, the TV competition he won in 2015.
“I was wracked with nerves but she was always there, just saying ‘You can do this’, ‘I think you guys can win this’, ‘You’re so white normally, but gee you can dance’.”
Barnett’s remarkable and high-profile broadcasting career – from his time on What Now, through a range of hit TV shows, and as a ratings superstar for the More FM breakfast show and in recent years as part of the juggernaut Newstalk ZB line-up – is a tribute to his rare talent, most definitely, but also the support and encouragement of Jodi.
Unlike Barnett, the self-described “performer”, Jodi has always wanted to be behind the scenes, he says. “We’re very different in that regard.”
She was a pharmacist when they met – born and raised in Taupō before high school in Havelock North and then a move to Christchurch after her pharmacy studies.
But a career in that field was not her ultimate goal.
“Her whole mission in life was to be the best mum she could be and the best wife that she could be,” says Barnett.
“And if you look at her life – by any measure of success – she completely exceeded that.”
Their four girls – Samantha, Sophie, Bella and Lily – are all now in their 20s. Samantha and Sophie are mums themselves; Barnett and Jodi have three grandchildren.
When Jodi was diagnosed with brain cancer almost six years ago, Barnett literally fainted.
Her seizure at home, in April 2018, had come out of nowhere. “It was horrific.”
“I’ve never seen anything like it. I’ve been absolutely scarred and forever will be. I just have to bury that image way down deep.
“I knew what was happening. I knew it was a seizure. But I’m like ‘What’s happened, what’s happening’ and screamed to my daughter Lily, the only one who was at home at that point, and we dialled 111.”
An ambulance rushed Jodi to hospital. “She was clearly very, very sick and that just set about this awful chain.”
Jodi was diagnosed with two brain tumours. Tests revealed a malignant cancer, glioblastoma.
She started losing her speech almost straight away.
Three or four days after the seizure and before her first operation, she woke in the night, trying to speak, but her words were a jumble.
“I’d say ‘it’s just because you’re tired, lovey, it’s okay’,” says Barnett.
“You could see she was scared because she was trying to speak. She knew, she could hear [herself].”
The first operation was successful, with almost all the two tumours removed. “We were overjoyed.”
Within two weeks, however, Jodi cried out in agony in the middle of the night.
“She’s tough, stoic … but she was in agony, holding her head.”
She was rushed to hospital again. A neurological assistant urged Barnett to summon his daughters to the hospital.
“I said, ‘Sorry?’
“I was in disbelief. She said ‘You better get them here as soon as they’re able’.
“I said, ‘Do you think she’s going to die?’ She said, ‘I think she will possibly struggle to get through the night’.
“Even telling you now, it’s traumatic.”
Jodi was diagnosed with a catastrophic brain bleed. She made it through the night, but the prognosis was grim.
Five neurosurgeons had looked at her scans and said they did not want to operate. They feared she would not walk, talk or have a quality of life again.
“I should basically let her go.”
Barnett says he’s in awe of the medical profession, having seen two of his own daughters become doctors.
He pays a special tribute to neurosurgeon Simon John. “That guy has been beautiful, he is an amazing man. He really cared for Jodi as well.”
But Barnett said he did not agree with the recommendation that they should not operate for a second time.
“I don’t say this with a hint of smugness; I am gobsmacked at the intellectual capacity of these neurosurgeons and their incredible knowledge. You know, they hold people’s brains in their hands.
“But I literally said to him, ‘You are God-like, but you’re not God’. And we as a family really believe in God and we believe that he’ll get Jodi through this and so I want you to operate.”
Six days after her second surgery, Jodi was discharged from the hospital and took two steps to get into the car. She continued to “have an amazing quality of life”.
And while she would struggle with words – five years on, she can no longer speak at all – she was able to say five words for a time to Barnett.
“I love you so much.”
The disease is dreadful; says Barnett, and the impact on the family has been “brutal”.
Brain cancer can be incredibly aggressive. Tumours, as in Jodi’s case, can return quickly.
Many patients with malignant and aggressive brain tumours survive for less than two years. Doctors generally don’t operate more than once or twice.
Jodi’s fourth and final operation, in January this year, was followed by another round of chemotherapy with a specialist drug.
Barnett says over the years, his faith has led him to believe Jodi would “get through this – and she did every time”.
“But of course, more recently, I’ve realised that we are really in a battle.
“She won’t quit. She’s not the toughest woman I know, I don’t qualify that. She’s the toughest person I know.”
She has not once cried about her predicament.
“I’ve cried bucket loads. When I’m showering her and massaging her legs I just cry.
“I’m holding her legs and her feet and just looking at this girl, just my beautiful wife, and saying, ‘I just want you forever and ever’.”
After Jodi’s brain bleed, Sophie turned to Barnett in hospital.
“She said, ‘Dad, I just don’t want to live in a world without mum’,” says Barnett, in tears. “And that’s so what I felt, I just didn’t want to live and don’t want to live in a world without mum.”
Barnett and his daughters talk of Jodi’s selflessness – regular breakfasts in bed for the girls, and donating her kidney to one of her sisters.
Barnett says he misses Jodi’s voice and her wisdom.
“All that insight and it’s just gone. I just so yearn for that. But most of all, I yearn for her … she would just cup my face, just hold my face and say, ‘I love you so much’.
“When she said that to me, I thought life doesn’t get any better than this.”
The Barnett family is close, bonded through love, faith, and holidays.
Barnett and Jodi used to love going out for dinner but, he says, she was not materialistic, never into fast cars or flash living.
She often cited a movie quote: “We need to celebrate the extraordinary ordinary life.”
Up until recently, the family owned an “old, crappy, beaten-up” purple Toyota Previa, nicknamed Barney. It had clocked 300,000km before the family finally gave it up.
“We’d say we’ll get a new car for you Jodi – she’d say, ‘this thing’s fine’. You could hardly hear yourself think on the open road, it was so noisy; Jodi didn’t care.
“This immaculately presented, stunning, impossibly beautiful woman in a Previa. She didn’t want jewellery, didn’t want [other items]. People wouldn’t believe that, but it was 100 per cent.”
Barnett says it took him almost 20 years to convince Jodi to leave the kids at home for a weekend away together. In September 2010, she agreed to a romantic escape to Hanmer Springs.
Late on that first Friday night, the pair were in bed together. Jodi said she had a weird feeling and wanted to get home to the kids.
Barnett convinced her they should wait until the morning at least. He was looking forward to a hotel breakfast featuring hash browns.
At 4.35am on that Saturday morning, a 7.1 magnitude earthquake struck Canterbury, causing widespread damage (it was to be the precursor to the devastating February 2011 quake).
“Hanmer Springs, because it’s on the fault, just shook; the whole building shook.
“Jodi was panic-stricken and said, ‘We’ve got to go’. I said, ‘Darling, we’re not going, it’s pitch black’.
“It was in winter too. I said, let’s wait till we can see because the roads and the bridge might have gone out. It was a vicious shake.
“I said, look, I don’t think the girls would have felt it in Christchurch.
“The next moment the phone rang and it was Samantha.
“She said, we’re all in bed together, we’re all safe.
“But the televisions have fallen off the wall, furniture’s down and I’m like, ‘Oh my gosh’. That was the first night of being away together.
“It took a while after that to get [Jodi] away again.”
After six weeks off air, Barnett was due to return to Newstalk ZB next Tuesday, operating from his makeshift studio and desk in the garage of his Christchurch home.
But life, he says, is very fluid, and “I don’t want to miss a moment with Jodi”.
His studio desk is about five paces away from Jodi.
“The reason I’m doing this story and why I wanted to talk to you and want to put it out there is because, for whatever reason, for 35 years in my job, I’ve formed a sort of a relationship with people.
“If anything at all, the one thing I take pride in is that people see me as being authentic and being honest and just being legitimate.
“The reason I want to do this story is that we’ve had so many people ask us about the situation and they’ve sort of been along the journey.
“They’re almost too scared to ask because they don’t want to intrude; they want things to have gone well.”
He says he feels genuine care from the public for Jodi and his family.
“I feel – not in a burdensome way – like I want to give back to people who have shown interest, love and care from afar.
“People who don’t know me, people who don’t know Jodi, but through the broadcasting conduit, they’ve formed a relationship and that’s how it’s felt, it’s a relationship.
“I want to give back and be honest and say, look, things are grim now.”
He also has another motivation.
“I hope people who are in our situation will go ‘Simon, you’re right, we’ve been here. It’s awful. We know how you feel’.
“I know how they feel now. I hope this story is reflective, not of our family in isolation, but I hope I tell the story that everybody that’s going through this, gone through it, been through it goes, ‘we get it and it’s awful and there are no words’.
“No words can ever actually bring comfort in this situation.
“I remember saying that in a radio interview years ago, just saying we’re not unique in this, sadly, but also gladly, you know, like it’s we’re not alone.”
Barnett says his and his family’s Christian faith has remained rock-solid.
He tells a story of asking God for a sign in the first year of Jodi’s illness, that she would be okay. In the Bible book of Exodus, one of the seven plagues features frogs. Send me a frog, prayed Barnett.
At their former home – they have moved into a new, slightly smaller house to help with Jodi’s care – they had a swimming pool. Two weeks after his prayer, Barnett lifted the pool cover and heard a splash.
“I’m like, huh, what was that? I wind the cover back and there is a frog in my swimming pool, doing breaststroke.”
He says he’s suspicious by nature, but “that’s a crazy coincidence”.
People say to him that God or Jesus “is just a crutch” but he says it’s bigger than that – “he’s a hospital”.
He understands why people would question if there really is a God, given what’s happened to Jodi.
“I reconcile it, that there’s just so much I don’t know this side of Heaven. I just can’t work it out. But I know God’s good and I know God hates this himself.
“And then the next question which I understand people will say – can God stop it?’
“And I say yes, he can. Why doesn’t he? I don’t know. I don’t know.”
For now, it is a day-by-day proposition for a family forced into an impossibly sad situation.
“That’s what’s so, so scary and hard about this. I know that my life will never be the same,” says Barnett.
“I read Terri Irwin’s book when she lost Steve. She couldn’t take his toothbrush out of the toothbrush holder for eight years – she just couldn’t move on from the grief.
“In her book, she said the only time she moved on was when somebody said, ‘You need to accept that when Steve died, a part of you died and it will never come back’.
“I don’t want to be on my own for the rest of my life. I’m 56 but she’s completely matchless. Completely matchless and I know that.
“It’s just so, so sad.”
Barnett wonders if he will ever genuinely laugh again. He misses running. Everything has paled into insignificance.
“It’s one foot in front of the other. It’s learning how to breathe again but every day is walking with a limp.
“I miss being able to run and unconsciously laugh and that’s what I fear: Will I ever laugh again?
“Like a belly laugh that isn’t tainted or tarnished through this filter of real worry and pain.
“I sound like I am hero-worshipping her, but the fact is, she is my hero.
“I’ve said to her multiple times in the past five years and even though she can’t respond, ‘I’m simply in awe of you’.”
He says his bond with Jodi has only strengthened.
“As if it were possible, I love her more deeply now than I ever have at any time in our marriage. I mean, so many things have changed, but I just love her now more deeply, more intently than I ever have at any point in 32 years.
“So many people have said you’ve just got a genuine love story.
“Unfortunately, it’s just got such a tragic end and I never saw it. I just never saw this.
“But as the Bible says, love never gives up, love never loses faith, love is always hopeful, and endures through every circumstance.”
The Barnett girls: ‘Is Mum actually an angel?’
Simon Barnett told his daughters that he’s in a privileged position to tell the world, “Your mum is unbelievable”.
All four sat down with me after I spoke with Simon, and I heard it first-hand.
Samantha, 29, is a mum and first-year doctor at Christchurch Hospital and is married to Micah.
I was newly married when mum had her seizure. I beat the ambulance to hospital. I remember meeting mum when she came in, she was conscious. [The diagnosis] was devastating. You felt like everything dropped out from under you. We moved back in with Mum and Dad; I was the oldest, I felt I could help with the care. I did a bit of that transition period as mum lost the ability to walk and talk as effectively. Mum is just so incredibly kind and thoughtful, our number one supporter. When I was in Dunedin, she sent me a card and a care package probably every week. By the end of the year, I had a whole wall of cards. You could call her about anything – there was never any judgment, she just provided advice and encouragement.
Sophie, 27, is a stay-at-home mum of two who is a trained speech and language pathologist married to Cody.
We’ve always been an extremely tight family – we all live in the same subdivision. We’re literally within 10 minutes’ walking distance. We’d have our low moments, and the other sisters would pick us up, we’d take turns as to who were the strong ones to carry us through. Mum is the most caring and loving person. People say when things like this happen, ‘Oh, this is a real wake-up call to appreciate my mum or my dad’. We’ve never needed that – we always knew how lucky, how blessed we are, how amazing mum is; we never needed a wake-up call. She would from the first day of school, through primary and middle school, write a handwritten note in our lunch box. When dad was on the breakfast show, she would get up with him at 4am, just so she could sit with him, and make him breakfast. If I can be a fraction of the mum that mum is, I’ll die a happy woman.
Bella, 24, is a trained and graduated doctor, who is taking time off to nurse her mum.
I was in Dunedin doing studies and came home after about 18 months. For mum, it was important we finished our degrees. I moved into home for a period. Now I’ve been able to take time off work to look after mum. Dad throughout has been massive, the backbone. The love that he and mum have is extraordinary. Mum managed to keep her maternal role the whole time. Up until very recently when she was communicating, she was still mum. If someone had a bad day, she’d be hugging us, smiling, or rubbing our back with the one arm that worked. I remember when I was little, I was probably 5, I said to dad: ‘I have something to ask you – is mum actually an angel?’. She’s been genuinely the best mum. She’s special.
Lily, 23, is studying IT with the aim of becoming a UX designer. Her partner is Hushdon.
I was 17 when this happened. I was asleep and I heard dad screaming, and dad was trying to get mum to breathe. It was exceptionally traumatic. For my whole life, mum, dad and my sisters have been everything to me. When this happened, I was distraught. I am so blessed because of my sisters and mum and dad. My three sisters have never left my side, they have stepped up. My beautiful sisters are exactly like mum – they have mum’s kindness, mum’s compassion, mum’s selflessness. And should I say dad as well! At school, after the earthquakes, I struggled with my mental health and I called her sometimes seven times a day, she would always answer. She recorded a prayer for me, which I listened to over my headphones. Faith is a big part of our family. Mum and dad’s love story is extraordinary. Their love is so strong and so pure; it’s like something out of the movies. He has been a superhero.
-By NZ Herald editor-at-large Shayne Currie