Real Life

Single father's story of unconditional love

Superdad Cliff left his job and devoted his life to caring for his disabled children - who have the same disorder as the one caused by the Zika virus.

Cliff Robinson can only imagine what it’s like for pregnant women living in places where the Zika virus is rapidly spreading. From his home near Thames, the 79-year-old says the fear and the uncertainty over whether or not their children will be born with the neurodevelopmental disorder microcephaly must be a nightmare.
Having single-handedly raised two children with the condition, Marita (49) and Johnny (45), Cliff says he’s heard more about it over the past three weeks than he has in 50 years. He knows all too well what these parents might face – and his advice is honest but also full of hope.
“It can be a debilitating disease, but it can be managed and the family can have a good life. Those with microcephaly probably won’t be able to get married or have a job, but in a lot of instances, they can get up in the morning, have their breakfast, go to a centre and come home – they can lead life like most members of society.“
While the Zika virus is a new risk factor, there are other causes of microcephaly, including genetics, exposure to infections in pregnancy such as rubella, toxoplasmosis or cytomegalovirus, severe malnutrition to the foetus and exposure to harmful substances. The disorder itself has been described as a box of surprises – some with microcephaly cannot walk or talk, for others the only obvious sign is a smaller-than-average head. Cliff believes Marita and Johnny’s microcephaly was due to genetic changes. While there’s a wealth of information out there now for new parents, in 1967, when Marita was born, he and his wife Mary were clueless.
“The nurse said, ’Oh, your child’s a microcephalic,” Cliff recalls. “She may as well have been describing a visitor from outer space – that’s how little idea we had of what this was. At first, the nuns said, ‘Leave her with us and we’ll take her away and look after her’ – back then it was the custom to put children in institutions or homes run by churches. I talked Mary into keeping Marita but she was reluctant – not a bad mother but one who could never really accept her daughter.“
Mary, who was 26 at the time, had schizophrenia and, when Johnny was born two years later, also with microcephaly, despite a geneticist ruling out the possibility, her mental health deteriorated further. After spending time in a treatment centre, she returned home to her children, but not for long. Cliff remembers the day she said goodbye like it was yesterday.
“Mary woke me up on June 15, 1970 and said, ’I’m going,’“ he recalls. “I thought she was going down to the shop or something. When I got out of bed, her clothes had gone, the car had gone, Marita was crying and Johnny was in the cot propped up with a bottle. Here I was with two disabled children and not a clue.“
At the time, Cliff says he was a hard-working, hard drinking typical Kiwi bloke who had lived his life at sea as an engineer. Initially, he put his children into care and even considered leaving them as their mother had. But then one day Marita changed his mind.
“I had decided to go back to sea and join a crew. But I’d been missing her terribly because she was such a lovely little thing, so I went to visit her. She came running towards me saying, ’Dad, Dad, Dad!’ and that was it,“ he recalls fondly.
Cliff left his job when the domestic purposes benefit was made available in 1973 and began caring for his children full-time. More than four decades on, Marita still hugs him each morning and tells him how much she loves him.
For Cliff, the days are long with his children needing constant supervision. Johnny suffers from diabetes and schizophrenia, and Cliff has to deal with his son’s occasional aggressive outbursts. Marita can help make breakfast or a packed lunch for herself and Johnny to take to their IHC service that Cliff drives them to every weekday.
“When Marita and Johnny were small, there was great urgency to try special things in education – I just thought it was rubbish,“ he confesses. “I never bothered too much about whether they could write the alphabet or count to 20. I taught them how to cross the road safely and which was the men’s and womens’ toilets – skills to help them enjoy life. And that’s the life we’ve lived.“
Cliff lives mostly off the land and sea to feed his family. He tried to teach Marita and Johnny about the countries he’d visited during his time overseas, but they were never interested in maps or globes. For the former seaman, there was only one thing for it. Over the years, he’d squirrelled away a little money, so he took his children travelling – on the smell of an oily rag.
“I’d read up on the cheapest places to go – Sri Lanka, India and Mexico – where you could stay in hostels and live cheaper per day than in New Zealand. We took some awful chances and visited some pretty dangerous places, but they’ve had an enormous look at the world. Sometimes I’ll talk about places and they’ll say, ’I’ve been there!’ – little skites,“ he laughs.
Things didn’t always go to plan, though. After a few months in Mexico, Cliff was waiting for his money to be sent over from New Zealand without a penny in his pocket. But they’ve always found kindness in strangers and his children have learned so much from the experiences.
“One Kiwi guy we met at a New Zealand Embassy had a packed lunch. He gave us his sandwiches and sorted us a place to stay,“ Cliff recalls.
They have been to Africa, seen the Great Pyramids of Giza, and even met Pope John Paul II, who put his arm around Marita in the Vatican City. A special memory is helping to feed and care for abandoned children at Mother Teresa’s home in Calcutta.
“One of the nurses took a shine to Marita and gave her a pack of bubble gum she’d been saving. These nurses had a sari and the Bible – that’s all. It’s those little acts of kindness, the spontaneity of the human condition that mean so much. Marita’s always had the ability to captivate people, and I’ve always taught my children to respond to acts of kindness, thank people and have a ready smile.“
But Cliff knows the world is not always like that. The biggest obstacle for his children, like others in the disabled community, is being accepted by the public.
“Most people find it awkward to be in the company of disabled people and don’t know what to say. Marita and Johnny can be standing right there, and people ask me how they are. I say, ’Ask them!’
“In the wake of the Zika outbreak, Cliff is hoping the New Zealand government will assist families who have children with microcephaly in the Pacific Islands. And he thinks the Olympic Games, due to be held in Rio de Janeiro in August, should be postponed.
“If I was a woman, I wouldn’t be going there,“ he tells. “What’s more important, a condition as bad as this or running around a track? While I love my children, there should be a discussion on this. We have to get our priorities right.“
Cliff, who turns 80 in December, fears for his children’s welfare after he dies. He can only hope they get the love and care they deserve when he’s gone. For all the hard times, Marita and Johnny have given him 10 times more joy and love.
“We have such a wonderful life together,” says Cliff. “The message that I have for parents who have microcephalic children is you can enjoy them. It’s tough, but you can lead a great life with a son and daughter who are disabled.“
Words: Anastasia Hedge

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