Saturday 10 December 2016

Please tell us what you think!

On Facebook, a friend of Mui’s wrote of her:

‘I happen to know this loud mouthed, persistent little monkey for the last 12 years (God really?!?) Do not be fooled – her unedited-not-for-the-shops life story is chock full of alcohol induced activities, (much like all of us really!), rugby stories, anger management failures, plots to kill mini bus drivers and name dropping of almost every celebrity known to hit HK. I’m pretty sure none of that is in this book that her lovely parents have written… But you might have to buy it to find out and if not – go and have a pint with Mui Thomas down the pub (your round btw).’
The line: I’m pretty sure none of that is in this book that her lovely parents have written begs the question: ‘What is in our book and why should people read it?’
Our book is a bare-knuckle account of how and why one woman (Tina), the birth-granddaughter of an Auschwitz survivor, overcame the traumas of her childhood and, quite by chance, came to fight for and adopt and raise an abandoned child with a deforming skin disorder in Hong Kong. And what that child – just a baby – overcame to stay alive and the challenges day-to-day from then on up to the present day.
This book does not sugarcoat the reality of raising an abandoned daughter with special needs, does not build false images and confronts the issues head-on. Like so many other families who nobody knows anything about, we are ordinary people dealing with an extraordinary situation. The “voice” of the book is Tina’s though it’s written by me. Mui has contributed her own words, too.
In the words of some of the people who have read it:
·         “This book unfolds a dramatic real life story between a young woman’s traumatic life (Tina’s) and how it impacted her and a child’s life (Mui)…”
·         “… the narrative of Mui’s life is interwoven with Tina’s story…”
·         “The action is solid, the dialogue flows, and the whole thing is smoothly paced. Love the touches of philosophy…”
·         “I experienced and absolute rollercoaster of emotions…”
·         “… once in a while a story comes along which makes you sit up and take note and makes you want to get your act together…”
·         “This is a must read for anyone that admires the enduring human spirit and how it it triumphs against all odds…”
Our daughter is an inspirational young woman not because she has a skin disorder – she has always been told her skin does not define her – but because with support, she’s willing to confront and overcome challenges that might break many of us. It's why, as a family, we give school and motivational talks together.
We are grateful to the Duchess of York who introduced us to her literary agent, and grateful too to Mui’s de facto godfather, Sir David Tang, for introducing us to the Duchess of York.
We are a family getting by in a little village in the eastern New Territories of Hong Kong. We never thought our story would interest anyone beyond friends and family.
Please tell us what you think.

Saturday 15 October 2016

This blog was first published by Cathay Pacific inflight magazine

‘Sai Kung in the eastern New Territories of Hong Kong is a surprise, a breath of fresh air, a relaxation, a break, a quality of life; Sai Kung is coffeehouses, bars, little bakeries, eclectic eateries, seafood restaurants and al fresco dining; and beyond the town itself, Sai Kung is rugged beauty: rolling hills, uninhabited islands and white sand beaches; wild monkeys, barking deer and feral pigs, and cows that wander through the streets. Sai Kung is a world away from the picture postcard images of Hong Kong: the hustle and bustle and towering glass skyscrapers of downtown Central; the “girlie” bars of Wan Chai made famous by Richard Mason’s The World of Suzie Wong; and the madding crowds of densely populated Mong Kok.’
(Extract from The Girl Behind the Face by Rog Thomas)
SAI KUNG IS also where my wife Tina and I raised our daughter, Mui. We became Mui’s parents quite by chance.
It was summer and Tina suggested we volunteer for a couple of weeks with young children. It sounded fun. We were introduced to Mui, an abandoned one and- a-half year old Hong Kong Chinese girl with a rare deforming and life threatening skin disorder called harlequin ichthyosis. We looked forward to having Mui visit us in Sai Kung.
But each time we visited Mui in the hospital where she lived, she screamed and turned away and ripped off her skin, tearing out clumps of hair until she was a bloody mess. For Tina, winning Mui’s trust quickly became a stubborn battle of wills. And each time Mui would finally calm down, she was inseparable from Tina, like a baby kangaroo in her mother’s pouch.
It wasn’t until the beginning of the following year that this battle was won and Mui finally came to visit.
Twenty years ago, caring for a child who looked as different as Mui did in Hong Kong was a constant challenge: people in wheelchairs were stared at. Taking Mui outside meant walking the gauntlet of  staring and occasional cruelty: sometimes people shouting insults at us, sometimes people screaming at Mui. Once, someone spat in Tina’s face.
But Sai Kung has always had a strong sense of community – although connecting with the warmth and kindness of the local Chinese population meant making a bit of an effort. It began with our first ever walk through Sai Kung.
In the market curious Chinese women, men and children clustered round us. Tina smiled and said jo san – good morning – to the different faces in the crowd and told Mui to say hello, too. An old lady pushed forward and demanded to know what had happened to Mui. Tina told her it was a skin disorder and added, Mui’s Heung Gong yan – a Hong Kong person. The woman smiled and gave Mui sweets. Tina told Mui to say thank you and give the woman a hug, and with a hefty nudge of encouragement Mui hugged the woman, who smiled, and the cluster of people was soon smiling, too.
When we left the market Tina told Mui to wave and blow a fei man – a ‘flying kiss’ – and everyone smiled and waved and blew kisses back.
In the street, some people stopped stiffly, some stared silently, some screwed up their faces. Some people recoiled or jerked their heads back like they’d been scalded. We walked on and smiled at them, said hello, made eye contact and sometimes held their stare, or chose not to see them.
Treating Mui as an ordinary child seemed to put the people we bumped into in Sai Kung at ease. As she has grown up, folks in Sai Kung have tended to embrace her and regard her as a sweet and confident girl.
How we came to adopt this courageous little girl, how our daughter grew up to inspire ordinary men and women across Hong Kong, how she won over a British prime minister, billionaires and royalty with her dynamism and spirit, and how cyberbullies drove her to the brink of suicide – that is our Hong Kong story. We’ve shared it in a book: The Girl Behind the Face and we have now signed with a US literary agent.

If you want to help us build a platform to help individuals and families who are fighting battles no one else knows anything about, you can do so by clicking “Like” at the top of our Facebook page The Girl Behind The Face and by sharing it with your friends.

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Saturday 10 September 2016

Blame no one. Expect nothing. Do something.

An afternoon in autumn, 1996… The policeman’s hand’s outstretched and raised to indicate I stop. Steering wheel gripped white-knuckle-tight, I curse, I pump the brakes. Serenely in the glowing sun and noting number plates, policemen move from car to car booking drivers one by one. Still rolling to a stop, still cursing, I bang my shoulder to the door. The door swings open. The hinges creak. Whites of eyes glow white-hot as I struggle from my seat. The officer’s face is calm and blank, a notebook’s in his hand. His lips part matter-of-factly as if about to speak. ‘NO!’ I bark, ‘you listen,’ I shout, ‘I’ve got no time for this.’ The officer’s back is quickly straight. ‘My daughter’s in the back,’ I say and jab a finger at my car. ‘She’s sick. Get us to the hospital. NOW! NOW!’ Still calm but eyes alert to me, the officer meanders round the car. He peers in. He sees Mui tightly held by Tina forlorn and tiny in Tina’s stiff embrace and barely conscious. Dried curls of peeling skin are peeling dryly from Mui’s face. ‘HURRY!’ screams Tina from her seat. The officer turns tail and runs. I jump into the car. Seconds tick-tock loudly in our ears. A pair of motorcycles roar off on either side of us lights pulsing in our windows as we roar too. At traffic lights both patrolmen beside both motorbikes block traffic and wave us through. Oblivious to sense and caution on we hurtle. No time to waste and Tina’s running from the car towards the hospital with Mui hanging from her chest to where the doctors are preparing. To where we’ll wait. Only of course, that’s not how it really happened…
An afternoon in autumn, 1996…. Mui sits in Tina’s arms barely conscious on Tina’s lap. She’s running a high fever. Rolling eyes suggest a blood infection. I’m driving and I’m cheerfully telling quirky stories while Tina sings because Mui loves it when we do. It distracts her. She vomits into a bucket on Tina’s lap.
Tina and I share glances in the rear-view mirror that betray our crippling fear. It’s the time for silent prayers. Our glances give each other strength. We continue with the cheerful, quirky stories and the songs.
Up ahead the traffic slows. Three lanes of static cars. Hard shoulder’s free. Impatient drivers take a chance and use the shoulder as a shortcut round the bend ahead. ‘Should we do that?’ ‘You think we’ll be ok if we do?’ ‘Police could be waiting round the bend.’ ‘If they book us we’ll be even worse delayed.’ ‘Then let’s not risk it.’ The traffic crawls. Minutes tick-tock loudly in our ears. Round the bend and sure enough a backed-up row of cars are on the shoulder drawing to a halt as an officer holds up one hand. Policemen move from car to car booking drivers one by one. Tina and I grin high-fives in the mirror. Traffic clears. On we hurtle. No time to waste. I pull up at the hospital. Tina’s running from the car with Mui hanging from her chest. We’ll stay nine days in hospital this visit.
When later we tell friends about the drivers being stopped and booked for taking the hard shoulder, they both look puzzled. ‘Surely the police would have waved you through. They’d have probably brought you to the hospital with an escort!’
In the autumn of 1996, Mui’s hospitalisations, her unstable health, were constant challenges but that’s just the way it was. We didn’t expect special favours, we just got on with life with a smile like everybody else. And though the challenges are different now, we still do.

If you want to help us build a platform to help individuals and families who are fighting battles no one else knows anything about, you can do so by clicking “Like” at the top of our Facebook page The Girl Behind The Face and by sharing it with your friends.

Do leave a message if you’ve enjoyed reading this, or earlier, blogs. Thanks & see you in a fortnight!

Saturday 13 August 2016

"Let’s give it a go": Raising Mui

Beside a sloping jungle airstrip in Papua New Guinea, the Australian pilot of a small light aircraft loaded with vegetables wondered out loud if my rucksack and I would be too heavy for his plane to takeoff. I’d asked to hitch a ride. He scratched his scalp with a baseball cap pushed far back on his head. He looked pensive, then shrugged, then he said: ‘Aye mate… let’s give it a go!’
I clambered onto sacks of sweet-potatoes and taro. The airstrip was hacked from dense jungle. I gazed through the windscreen ahead. Trees to the right of me, trees to the left of me, trees in front of me. Sweet-potatoes dug into my back. The engine raced, I braced on the sacks, we cleared the tree tops both grinning.
Raising Mui has been seat-of-the-pants, too.
First home visit… baths, body creams, howling screams and vegetable curry – first and last curry after changing her nappies! Or the hospital visits and her face masked by blood dried black and her stare not sad just vacant. And in Tina plunged with a cheery smile.
The rattling wheeze of Mui with a chest infection, the chattering teeth of Mui with chills and rigours, the rolled back eyes of Mui unconscious with a blood infection. At Mui’s side at home and in hospital untrained, ill-prepared and fearful, but with determination and commitment, laughter and smiles, we give it a go.
As a family we confront obstacles placed in our path. The strangers with their screams, and their stares, and their pointing and their “I think she’d be better off dead”. The ban from the school bus, the ban from the swimming pool, the ban from the restaurant, the cyberbullying, the suicide thoughts are seat-of-the-pants moments to be dealt with.
Opportunities are grasped when we’re offered them. Flights to America, a trip to Disneyland, to Europe and to Macau. The welcomes, the gifts, the warmth; the famous faces who say “hello”.
Give it a go’s meant embracing the good times with relish. Watching Tina paint pictures with Mui; witnessing Tina build Mui’s confidence to approach people in public when Mui’s instinct had been to be shy. To have Mui dive under our bedcovers eager for mornings of fun. Tina teaching her how to read stories. Me helping her speak with more clarity when her lips were for years stretched too wide. Her vocabulary had everyone purring as she learnt English with giant strides. The tingle of pride at her first solo bicycle ride: ‘I’m doing it Daddy, I’m riding!’ The frivolous jollity of shopping trips, of hikes in the mountains, of barbecues on carefree days in the sun.
Days that flash by yet are seared into the mind: I watch my train as it arrives in the station. At a window Mui kneels on her seat. When she sees me she waves like a maniac. Her eyes shout out loudly, “It’s DADDY!” The doors swish wide and she’s first from her carriage. On the platform she’s in the Olympics and her finish line will be my embrace. Her hair flies about as she’s running and she leaps for my arms in her haste. Cheerfully and loud she shouts: ‘DADDY!’ and I’m feeling incredibly proud.
There’s no shame to admit that we’re humble, but I’m proud that we “give it a go”.

If you want to join us in building a platform to raise awareness of visible differences, cyberbullying and commitment you can do so by clicking “Like” at the top of our Facebook page The Girl Behind The Face and by sharing it with your friends.

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Saturday 30 July 2016

Strong Women… just get on with life

‘You always judge a man by how he deals with adversity’ is a not uncommon quote.
Women though, in my experience, tend just to get on with life.
When my favourite aunt needed to get from her village to another in the 1920’s but found no means of transport, she bought a small motorcycle on the spot and rode there. She stood up to my grandfather, too, whenever he put a member of the family down. When her fiancĂ©e was killed in World War One she never married. She just got on with life.
When my grandfather denounced my mother and my father on the doorstep of his apartment in front of my mother and my brother and me, my mother wiped away her tears, came home and made dinner. She just got on with life.
The first time Mui was rushed into the hospital emergency department with a severe chest infection when we were her volunteers, a nurse told us we were not allowed to be with Mui because we were not family. Tina stood her ground for over forty minutes and refused to leave the hospital. Finally the hospital staff relented and allowed Tina onto the ward. Mui was withdrawn and small on her bed, and suffering. The moment she saw Tina, her face exploded with delight. Each time after that when Mui was rushed into hospital, Tina, for two years as a volunteer and from then on as a mother, slept on the floor beneath Mui’s bed so as to be there for her. No beds were provided, no mats were allowed. After months of hospitalizations, I convinced Tina to come home for a few hours each night to sleep before returning each following morning before dawn to be at Mui’s side when she awoke.
Johnny Depp is the parent of a child who was once seriously ill. He frequently visits sick children in hospitals. The actor says: “The kids, bless them, they are so strong… they are so courageous. But the parents are the ones who are slowly dying.”
As a father, I would never belittle the role men play in their children’s lives or in the lives of those they help as volunteers. Men do get judged on how they deal with adversity.
And women? There have been days and weeks and months of adversity as Tina and I’ve raised Mui. There still are. Yet Tina has never complained about her own needs or on what she has missed out on. She has never expected help or support. She just gets on with life, as strong women do.
She’s made me a better person. She is my inspiration.
And now there is my daughter.

If you want to join us in building a platform to raise awareness of visible differences, cyberbullying and commitment you can do so by clicking “Like” at the top of our Facebook page The Girl Behind The Face and by sharing it with your friends.
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Sunday 17 July 2016

Here's why a vote for Mui matters

When hope is done there’s always action. When action is done there’s always help. When help is done there’s always love. And come what may there’s always Mum.
How odd to watch a TV medical drama and to, in seconds, relive a moment when a preteen daughter’s body dangles grey and limp and lifeless from her mother’s arms. A moment when all hope’s extinguished – just when hope is needed most – and as her parents we both think this time our daughter’s gone.
Yet still the mad dash to find the ambulance that’s got lost; the mother’s calm refrain: ‘Please God, don’t let Mui die’; the mad dash in the ambulance to the hospital; the calm resolve of doctors doing what doctors do. Hour after hour, till finally hope seeps back and the memory gets flagged up to be suppressed.
Till unexpected moments when the memory bubbles up and briefly floods the mind. But always there is the laughter and the joking to wind the lock gates shut.
Always the morning after the night before is just another day.
Life always carries on… come what may.
Our daughter says: “I still find the idea crazy that two people who only wanted to volunteer for a short while ended up scrapping their future plans to raise me. That shows some pretty amazing selflessness. But I'm happy they did.
And I will never be able to understand how my mum and dad managed to keep me alive, especially when knowledge of Harlequin Ichthyosis was so little back then. But because of them, I’ve been able to grow up and hopefully lead a normal life. They’ve done an amazing job and even if I don't always show it, I’m lucky!

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