Sir David Tang & the “monster” on the bus.

Uncle David, Mui’s de facto godfather, died this week. He’d been fighting cancer.

In the forward to our book The Girl Behind The Face, David writes of us as a family: “I am an admiring friend.”

Well, we’ve admired David since the very first day we met him; the day he changed one vile act of discrimination, into something very, very good. The day he changed our lives.

When Mui began at international school, she had to go by bus. Tina booked a seat for the coming term. The first evening, Tina received a phone call from a woman from the bus company.

‘I saw your daughter, today,’ the woman spat down the phone, ‘your daughter looks like a monster… She’ll scare all children… She will never go to school on my bus…’

No one offered help; people looked the other way. Unstable health meant Mui’s life hung in the balance then and Tina and I were coping together alone; no time to fight vile discrimination.

Mui was banned from the school bus and there was nothing we could do. It was a devastating moment. We shielded her from the truth and moved on.

Three years later, Tina received a phone call from a man we’d never met. An eloquent English voice asked: ‘Is that Tina?’

Tina answered, ‘Yes.’

‘I’m David Tang. I’ve heard about you and your family. I’d like to meet you, Roger and Mui. Can you come to the China Club on Wednesday?’

On Wednesday we made our way to David’s private club.

David’s humour was immediate, outrageous and fun and he had Mui in a fit of giggles and Tina and me laughing out loud from the off. And he wasted nobody’s time:

‘What’s this about a school bus…? Right, let me sort something out… How about a taxi back and forth to school…? You find a driver… I’ll pay…’

The following Monday, taxi driver, Mr Lee, became Mui’s twice-daily chauffeur.

One reader of our book wrote after reading the chapter in full: “Sickening to read these hurtful, ignorant comments but how good was D. Tang! Fantastic.”

And that same evening David did a second fantastic thing for us. Trips, parties, lunches, dinners, a medical conference in Seattle and so much more... down the years, David and Lucy, his wife, have done so many huge and big and small “fantastic” things for us.

On Mui’s 21^st birthday, a day doctors said she’d never see and we would never celebrate, we celebrated together with David and Lucy, on Sir David’s boat. It created another magical memory on such a special family day. Later in the afternoon as Mui opened presents and David told funny and mischievous stories, we sailed past the hospital on Hong Kong Island where Rog and I first met Mui and where we’d celebrated Mui’s second birthday – our first together. The distance travelled between both birthdays was lost on neither Tina nor me.

David has been a larger than life figure in a great many people’s lives and it has been a privilege to be called a friend by him and to call him our friend, too. So please keep Lucy (Lady Tang) in your thoughts and prayers, right now.

So many happy, funny and fun afternoons and evenings. We shall miss David greatly.

Thank you, David.

Rog, Tina & Mui Thomas (The Girl Behind The Face)

By Rog Thomas

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We saw this happen, but couldn’t believe our eyes

20 years ago today, Mui stole the show:

Adapted from: The Girl Behind The Face.

It’s June 30^th 1997. The eyes of the world are on Hong Kong. It is a sultry night. 156 years of British rule are ending. The territory is being handed back to China. The “Great Chinese Takeaway” Prince Charles calls it in his diaries.

At a few minutes to midnight, Tina and I sit glued to our TV.

Mui has a fever. She sleeps fitfully in her room a few metres away.

CBS news anchor Dan Rather, who Mui likes to watch and calls Uncle Dan, is dressed in khaki fatigues ready for four thousand Chinese soldiers to arrive on Hong Kong soil.

I fill our glasses with champagne.

Prince Charles represents the Queen. He begins to deliver his farewell speech. In minutes Hong Kong will once again belong to China.

The door of Mui’s bedroom opens. She stands bolt upright in the doorway. Eyes stretched wide-open, she looks ahead with the opacity of a blind man’s stare. ‘She’s still asleep,’ Tina whispers. Tina and I remain stock-still. Mui often sleepwalks. We guess it’s best not to wake her.

Bloody from scratching, Mui walks round the settee and squeezes into her favourite spot: in-between Tina and me. She stares vacantly at the television. Tina looks at me, I look at her, we both look down at Mui. We stifle giggles and sniggers. We’re missing Prince Charles’s farewell speech. But we can’t take our eyes off Mui. ‘Should we wake her?’ I whisper. Tina shakes her head.

It’s midnight. The rigmarole is done. The Union Jack is lowered, the communist flag is raised, the PLA rumble into Hong Kong in their thousands.

Mui stands up and sleepwalks back to bed. Only now, of course, her bed’s in China!

With champagne, we toast our daughter and Hong Kong.

Thanks Rog

"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!

To help us challenge attitudes to visible differences, cyberbullying and commitment simply “Like” our Facebook page at the top: https://www.facebook.com/GirlBehindTheFace

Thanks

Rog

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.

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 Face, we 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.