Hearing the Music: a guest post by Tina and Rog Thomas

We were inundated with people in the ichthyosis community reaching out to us after I started blogging when Brenna was born, and it was hard to keep everyone straight sometimes – who belonged to what family and what kind of ichthyosis they had. But there was one couple who really stood out – Rog and Tina Thomas. They had adopted a little girl in Hong Kong who was born at a time when surviving Harlequin Ichthyosis was nearly unheard of. Mui is one of the oldest in the world with HI, and just in recent months has begun to share her story. This family has such a touching story and message, and I know that they are changing lives by sharing, both in media and through their book, which will hopefully be published soon. Here are Mui’s parents Rog and Tina Thomas, in celebration of Ichthyosis Awareness Month…

A German philosopher once wrote: “And those who were seen dancing were thought to be insane by those who could not hear the music.”

People often do not understand how someone can fall in love with a child who does not correspond to society’s definition of perfect. Perhaps they simply cannot hear the music?

When our daughter, Mui, was three years old, and before the adoption process had even begun, she was handed over to my husband Rog and me in a car park, with the words: ‘I think, Tina, you might as well keep her.’

We never intended to adopt a child, let alone one with a life threatening skin disorder like Harlequin Ichthyosis, which makes the skin grow ten times faster than normal.

Yet our life has never been tinged with regret.

Rog and I decided to write a book, The Girl Behind The Face, to share our story of how two ordinary people saving to start a new life and a birth family in Australia came to adopt and raise an abandoned child with a rare, deforming skin disorder in Hong Kong.

I know personally what it is to be unwanted and rejected and be punished for it; I know what it is to witness beatings dished out and received by others; I know what it is to feel helpless and feel unable to make a difference.

And sharing my story, which touches on Auschwitz, abuses and the Baader-Meinhof gang, and love, fear, violence and death, provides a context and a foundation for understanding how Rog and I could be of help to Mui, whose reward for fighting to stay alive was to be hidden away on the very fringes of society in an institution that could, at best, be described as inappropriate.

Life’s not been easy raising Mui – of course it hasn’t – and life’s rarely been straightforward. Nevertheless, Rog and I have done whatever necessary to ensure Mui has lived her life with a smile on her face because she is our daughter and we love her – often we’ve been the webbed feet paddling furiously beneath her swan that glides serenely!

A woman has spat in my face while I held Mui in my arms; a man has followed Rog down a street screaming abuse at him while he held Mui in his arms; Mui has been banned from her school bus because of her appearance, yet we choose to focus on the positives – we choose to have a happy day not a sad one.

We have confronted and overcome each obstacle placed in our path without blame. We have expected nothing, but have grasped opportunities when they have presented themselves. And we have embraced all the good times together with great relish.

Even when Mui’s life hung in the balance during hospitalisations and I would sleep on the floor beneath her bed so as to be there for her before she was adopted; even when she raised her fists in anger at children who were mean to her and Rog had to counsel her; even when cyberbullies brought her to the brink of suicide, we never gave up believing there would be a tomorrow – and a bright one at that! Because we’ve not lived this life in order to live in sorrow. We cherish our dreams.

Our book is our response to the cyberbullies.

We’ve spent a lifetime avoiding all forms of publicity; now we court it. Why? Because sometimes you must reveal yourself in order to disappear into a crowd.

Abandonment issues and attachment disorders continue to complicate family life – they are the invisible differences that so frequently discomfort people who wish to put Mui on some saintly pedestal.

Well, our daughter is not an angel – she’s a bright and breezy 22-year-old woman just like any other. Only of course she’s not because she was born with a visible difference.

Nevertheless, she’s been raised with the Australian dictum: Give it go!

So, though Mui should avoid direct sunlight and can’t control her body temperature because she cannot sweat, and she suffers from arthritis, our daughter can be seen dashing around the rugby pitches of Hong Kong because she’s the world’s first rugby referee with Harlequin Ichthyosis!

We hope our book, The Girl Behind The Face, and our Facebook page of the same name, will help raise awareness of visible differences, invisible differences and cyberbullying, as well as encourage greater tolerance and understanding for those with special needs in the community

One thing I know for sure is that you really can rise above the problems that happen in your life and do some good for others.

Rog and I have not made it to Australia: we had to give up that dream when we adopted Mui.

Some people thought us insane.

Yet we could hear the music, and we’ve realized a bigger dream: we’ve done some good for someone else who society had rejected.

Rog and Tina live in Hong Kong with their daughter, Mui. You can find them on Facebook, and on Twitter, and Rog also writes a blog.