Friday, 9 June 2017

"You are an example to us who are starting this difficult path."


After posting on Facebook about our most recent Family Talk, at J.P. Morgan bank, Deisy, a woman in Peru, shared our page. I thanked her. She replied: "You are an example to us who are starting this difficult path."
Deisy is the young mother of a baby born with Harlequin Ichthyosis.
When our Family Talk was over at J.P. Morgan, Ryan, the Managing Director who invited us to share, said: ‘I shall hug my daughters extra tight tonight.’
And then Ryan made a charitable donation of twenty thousand Hong Kong dollars (HK$20,000) for us to forward to our Ichthyosis charity of choice: F.I.R.S.T. He arranged the J.P. Morgan “testimonial” for our new website, too:
Mui, Tina and Rog,
We had approximately 110 people in the auditorium and joining via telepresence for your Family Talk. Many of those colleagues have reached out to me to express their thanks and say how they had been touched by your family’s story – and the way you tell it. You have faced many painful challenges as a family and your courage to speak of those challenges gave us all tremendous respect for your family’s journey and gratitude for sharing it with us. Thank you for such a moving and thought provoking session. We look forward to staying in touch with the wonderful Thomas Family.
Ryan
This is our motivation to invest our lives into what we are doing. It’s not easy. Of course it’s not. Deisy understands that. It’s why she wrote. Ryan understands that. It’s why he donated.
During our Family Talk at J.P. Morgan, while sharing memories of life changing moments from her childhood and youth, Tina felt her throat tighten and her heart begin to race. She quickly became overwhelmed by a deep, deep sadness. But she sucked it up and smiled and carried on. ‘I battle my memories with smiles and laughter,’ she says.
Once, at the end of one of our Family Talks, Mui burst into tears when details were revealed about bullying that had taken place in school behind her back. She too has chosen to continue. ‘I'm feeling more and more comfortable now, talking about past experiences,’ she says.
Tina and I admitting we’ve both been diagnosed with PTSD; Mui admitting “attending sessions with a specialist... I have a lot of deeply rooted issues.” in our blog isn’t easy, either. Reactions like those of Deisy and Ryan make it worthwhile.
We met Mui 20 years ago as an act of random kindness to a stranger who wanted to be loved. With so many act of random terror happening around the world, Tina, for her birthday this week asks: ‘Please do one act of random kindness for a stranger.’ It need not be big. A simple smile will do. Who knows, it may even lead to something great. A simple smile and wave was how I came to marry Tina. How great was that!
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Thanks


Saturday, 20 May 2017

300... students / “I saw some of the teachers cry today,” the young girl said.

At the conclusion of our Family Talk, at Yew Cheung International School opposite Australian International School, after Q & A, I invited the students and the teachers to come forward and say hi! or give a hug or take a selfie… and with a cheerful roar, three hundred students swamped Mui in a scrum of smiles and laughter!
One smiling teacher shared with me: ‘The kids don’t normally do this!’
Another, to another teacher exclaimed: ‘I told you it would be like this… I told you, didn’t I!’ and her colleague agreed, ‘You did!’
One girl, no more than 14 years of age, approached Tina on her way to Mui, and with a smile she said, ‘I saw some of the teachers cry today!’
And Mui? She barely spoke. Instead, she grinned and posed for selfies and was hugged, and hugged others back and was group hugged and autographed the arms of students.
Giving school and corporate talks – our Family Talks – remains something very new for all three of us. We’re not old hands.  We’re not tired, professional motivational speakers. We’re just a mother and a father and a daughter.
It comes constantly as a surprise to us that our story generates such emotions as tears. We really wonder why. Perhaps because as most parents of a child with special needs say, we say: it’s simply normal life. And Mui? She knows nothing else. Life is life, we enjoy it. We do not see it as a big task. We see our daughter’s potential; we want her to be independent.
Mui says: ‘I don’t see myself as being different. I’ve never wanted to admit I have special needs. I just want to get on and do my thing. I’m thankful my parents have enabled me to live a pretty normal life.’
Nevertheless we do know that most parents of children with special needs are all too often given short shrift. Their stories are under-reported. It’s why perhaps so many such marriages end in divorce. The frequently-quoted statistic is of a majority divorce rate in marriages where the parents are raising a child with special needs. It’s a startling statistic. Perhaps it shows how much more attention should be paid to the lives of such people?
Thank you too to all those who responded warmly to my previous blog: The elephant in the room / the insult in the street. It was a big decision for Tina and me to reveal that such things as being insulted in the street still happen to us; and to reveal, too, that we both have been diagnosed with PTSD, and that we have a normal family story not a “Disney-ending” one. Thank you for your kind support.
Sharing our story as The Girl Behind The Face is a platform to empower others. We are grateful for all the support and opportunities we receive.
Please “Like” our Facebook page The Girl Behind The Face to help us to continue challenging attitudes.
For more on our school & corporate Family Talks, or to book one, please see our website for details.

Friday, 28 April 2017

The elephant in the room / The insult in the street

It came as quite a shock to Tina and me to be insulted, denounced and verbally abused by a woman in the street last weekend. It was insulting to have our love for our daughter questioned. And insulting to be told that we did not understand our daughter. This sort of abuse hasn’t happened to Tina and me for quite some time.
It’s funny how many people tell us: ‘I don’t know how you and Tina cope. I couldn’t!’ with regard to raising and loving Mui.’ Well it’s not that funny, I suppose, because Tina and I were diagnosed with Post-Traumatic Stress Disorder towards the end of last year as a result of coping with our daughter’s psychological challenges. Such is life. We are not complaining and nor is such a diagnosis an excuse for us to stop laughing. We just shut down our emotions. Bottle them up.
From the life changing challenges of her past that inspired her to help others, Tina’s dictum is the Robin Williams quote: “I think the saddest people always try their hardest to make people happy because they know what it’s like to feel absolutely worthless and they don’t want anybody else to feel like that.” Mine comes from Bill Parcells: “Blame no one, expect nothing, do something (positive).”
Stress, depression, breakdowns, post-traumatic stress etc tend to be the “elephant in the room” when it comes to coping with a son or daughter with special needs. Because support and understanding for the chaos of psychological challenges still comes a poor second to having a visible difference or raising and supporting someone who has. We know both sides of the coin. More than one friend has severed ties with us when discovering the psychological challenges faced by our daughter. No doubt more will follow. We accept this and as a result tend to keep such stigmatized pressures to ourselves.
But what we don’t accept is being insulted, denounced and verbally abused in the street and having the sincerity of our love for our daughter challenged, or having the challenges our daughter faces belittled. It is shocking ignorance.
In response to the woman insulting Tina and me, Mui says:
“Yes, I have battled with my parents about going, but I have been attending sessions with a specialist and we are working through a lot of issues. I may come across as fine and chirpy but I do have psychological struggles. I have a lot of deeply rooted issues. Ones that I don’t have any desire to inform the whole world about. I would only mention the struggles in our book and not discuss them on other platforms because I would feel even more uncomfortable than I already do because it’s such a personal topic. My parents and I are making mental health decisions that work for us as a family. Please respect my family and our choices.”
Of the woman Mui adds: “She has repeatedly screamed at me that I just need to follow her advice.”
As a family we owe a tremendous debt of gratitude to Dr Lauren Bramley as well as to Sir David and Lady Tang.
Nevertheless, we do not expect support so why share all of this? Because as a result of our Family Talks and our Facebook page: The Girl Behind The Facewe have come to appreciate how sharing our story might be of help to others.

Please "Like" our our Facebook page: The Girl Behind The Face

Thank you.

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.


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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.


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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”.

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