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Jonah & Nadene’s heartbreaking decision

Jonah and Nadene Lomu don’t allow themselves to think too far into the future. Faced with major uncertainties – such as the All Black legend’s continued struggle with kidney failure – the couple, who are parents to Brayley (5) and Dhyreille (4) prefer to take each day as it comes.
Jonah Lomu with his family

Jonah and Nadene Lomu don’t allow themselves to think too far into the future.  Faced with major uncertainties – such as the All Black legend’s continued struggle with kidney failure – the couple, who are parents to Brayley (5) and Dhyreille (4) prefer to take each day as it comes. So while there were many wonderful moments in 2014, nothing was taken for granted.

The year brought with it much change for the Lomu family. Brayley started primary school – something that both delighted and terrified his proud parents – and Nadene (35) and Jonah (39) were forced to evaluate their jet-setting lifestyle.

After five years of travelling as a family while Jonah attended engagements, events and meetings around the world, the Lomus are experiencing life as a “normal” family, complete with morning drop-offs, school lunches, regular bedtimes and, who knows, baby number three.

“She wants a girl,” Jonah says with a smile, shooting Nadene a playful look.  “I wouldn’t be upset if I didn’t!” she says. “But if we’re blessed with another child, then awesome.”

“Yeah, that’ll mean me getting kicked out of bed at 1am to get cheeseburgers, like last time,” Jonah laughs.

Brayley started primary school – something that both delighted and terrified his proud parents

Though talking about school newsletters, snacks, sports days and the like might seem mundane to many, these everyday trappings of parenthood have been nothing short of extraordinary for Jonah and Nadene, as they’ve strived to make sure Brayley and Dhyreille’s lives are as stable as possible in the face of perpetual upheaval.

“Before last year, the closest thing the kids had to ‘normal’ was watching Daddy have dialysis,” says Jonah frankly. “With all our work commitments being on the other side of the world, my treatment was the only constant in their lives. Now, school comes first. We have a routine for the first time ever.”

But also for the first time since the pair wed in 2008, Nadene and Jonah are facing long stints apart. Torn between her job as Jonah’s manager and her role as a mum of two, an understandably protective Nadene has had to a make a hard choice.  “I can’t be in two places at once!” she says with a sad smile. “Jonah and I just did two big trips away to the UK and to Chile, and the boys were standing in the driveway with my mum Lois, begging me not to go. It was heartbreaking.”

“So I’m going to have to do the work trips by myself – 99.9% of my work is overseas. I wish it was in New Zealand, but it’s not,” finishes Jonah. “And we have to do what’s best for the boys.”   Watching Brayley and Dhyreille run around with a rugby ball in the backyard – Dhyreille displaying that famous Lomu speed when Nadene tries to catch him for a clothing change – it’s clear the boys are Jonah’s absolute pride and joy.

Jonah & Nadene Lomu make the perfect team!

But as he lifts up a giggling Brayley for a photo, he has to pause for a second to catch his breath – a reminder of the debilitating illness he’s been battling for almost 20 years.  In 2011, one month after a triumphant appearance at the Rugby World Cup opening ceremony, Jonah was admitted to hospital with kidney failure. The organ donated by radio DJ Grant Kereama in 2004 had failed and, to keep Jonah alive, dialysis was required four times a week for six hours at a time.

“Since then, nothing has really changed,” Jonah shrugs. “I still need a new kidney, but I’ll require another operation before that can happen. I just have to wait.”

What has changed is his and Nadene’s acceptance of their situation, with pragmatic positivity replacing the sense of hopelessness the pair had only two years ago. “Hand on heart, it does get me down sometimes,” Jonah says. “But that’s when I look at my boys. If I didn’t have them and Nadene, I don’t know where I’d be.”

Looking at Brayley and Dhyreille, it’s clear Jonah and Nadene have each got a little carbon copy of themselves. Brayley’s very much like his mother – quiet and sensitive, but with a steely determination and thoughtfulness beyond his five years. Dhyreille, on the other hand, is pure Jonah with his boisterous, extroverted and larger-than-life personality.

Jonah with Brayley and Dhyreille

“I don’t know if he’s a blessing or just here to cause havoc,” Jonah jokes. “Dhyreille’s very active and very strong. We were at the gym one day so Nadene could train. We looked around and he was walking around holding a 10kg weight bar. He was three! It was incredible.”

“He’s definitely Jonah all over again,” smiles Nadene, looking on as Dhyreille continues to tear around the backyard.

“But Brayley is a bit quieter. And so considerate. If I’m having a bad day, he’ll ask, Are you okay, Mummy?’ He’s very sweet.”  Nadene admits to some typical first-day-of-school nerves, finding it exciting and terrifying – in equal parts. “School is scary!” she exclaims. “And dropping him off on that first day was awful. But you have to let go, don’t you?”

“We’re very protective of Brayley,” Jonah adds. “But this next phase of his life – school, sport – is exciting.”  To these devoted parents,it seems like only yesterday that Brayley, the son they thought they would never have, was born. Given a 0.01% chance by his doctors of fathering a child, due to the countless medical procedures he’s endured, Jonah still calls his boys their “little miracle kids”.

“There’s certain things that stick in your mind,” Jonah recalls with a smile. “Like Brayley’s first Christmas. Nadene had spent hours decorating the tree to perfection, and all of a sudden we hear this crash.  “We race in and there’s Brayley sitting next to it with this ‘I didn’t do it’ look on his face.”

The boys are both learning Mandarin – Brayley at primary school, Dhyreille at preschool – making for an adorable sight as they babble away to each other in their second language. Jonah and Nadene admit to being “completely oblivious” to what they’re saying, but love the fact that they’re picking up the vocabulary so quickly.

For all its adjustments, “big boys’ school”, as Brayley calls it, has been a welcome injection of normality when Jonah’s illness dictates so much of the family’s life. “With Jonah as their dad, life will never be totally ‘normal’,” Nadine says. “Every time one of us gets sick, I know what the consequences could be in terms of infecting Jonah – he has no reserves. There’s nothing inside him to save him. I can’t fix it and that’s heart-wrenching for me.”

The boys, however, are “very comforting” when Dad’s feeling poorly, Jonah says. “Although,” he adds with a laugh, “they’re now using me for chocolate biscuits. When I’m hooked up to the dialysis machine and Nadene’s told them they’re not allowed any, they come down to ask, ‘Dad, want some biscuits?’ I’ll say, ‘Go on, then’ – I’ll get just one while they’re off with the entire packet.”

Even with all the sickness, life for the Lomu family is pretty good, according to Jonah and Nadene, who firmly believe their relationship has never been stronger. “We were best mates for 12-and-a-half years before we got married,” says Nadene.  “A lot of people would never have to deal with what we’ve dealt with in that time and still be so happy.”

The couple still try to head out on regular date nights, usually involving food and fight sports, and Jonah’s made a habit of crashing Nadene’s lunches with her girlfriends.  “We love the same things,” says Jonah. “She’s competitive like me, especially in squash! I get run ragged by my own wife!”

It’s this playfulness that the couple have taken into 2015, which is shaping up to be their biggest year yet. With the launch of their latest project, SOMA Performance, a bio feedback programme designed to help kids deal with pressure in sport and school, as well as other soon-to-be revealed exciting projects aimed at improving the lives of New Zealanders, their schedule is as full as it has ever been.

Even Jonah and Nadene don’t know how they’re fitting everything in. “You just keep going!” says Nadene. “Life doesn’t stop. Whatever you’re given, you deal with it. It’s what we’ve been doing for years.”

“We want to make sure that our projects are future-proofed for the boys,” Jonah adds poignantly. “Nothing else really bothers us as long as they have a roof over their heads and food on the table – lots of food!”

Jonah will turn 40 in May – and it is one milestone he has allowed himself to think about. “We’ll be having a party, although I think I’d rather take the kids to Disneyland! But you know what?” he adds, leaning forward. “I wouldn’t change anything about the last five years. I really wouldn’t. It has been a cool ride. And at least we can say it has never been boring!”

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