Ichthyosis Awareness Month – The Girl Behind the Face: “Life’s rarely been split between either laughter or tears; both have existed simultaneously.”

“The mother of a child with special needs whose daughter was often called inspirational for behaving like other children, once lamented: ‘People seem to think these children raise themselves.’

We never intended to adopt a child, let alone one with a life threatening skin disorder like Harlequin Ichthyosis, which makes the skin grow at a super-abnormal rate. We were told nothing and were unprepared for everything. We were only volunteers wanting to do some good and have some fun. 

Our book shares the 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.

At times life has been harrowing, for years it’s been exhausting, but never has the laughter stopped for long. Life’s rarely been split between either laughter or tears; both have existed simultaneously.

You get knocked down; you get up again.

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

But why share this in a book? Because it happened. And understanding what happened – Auschwitz, abuses and the Baader-Meinhof gang; love, fear, violence and death – provides a context and a foundation for understanding how we could help Mui. It also lets people know you can rise above problems that happen in your life and do some good for others. It’s about being a survivor not a victim.

My dreams of Australia began when I was child growing up in Germany. It was a dream of living somewhere far away, and new, and sunny and untroubled by my past.

To date I’ve got as far as Hong Kong!

What happened to our daughter, Mui, in the first three years of her life was often horrendous. It scars her to this day. Because, the first three years of life are so important. Yet we’ve done whatever necessary to ensure she’s lived her life with a smile on her face.

Winning Mui’s trust was both hard fought and draining, early on. Alone, I would not have coped. My husband, Rog, and I have confronted and overcome each obstacle placed in our path, together. 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.

But always the extremes: as a family we have routinely been screamed at in the street; as a family we have relaxed with Kate Moss in her hotel suite.

Our daughter can’t control her body temperature because she cannot sweat, and she should be careful in the sun because of the damage it may cause her skin, and at the age of twenty-two she suffers from arthritis. Yet, she is now the world’s first rugby referee with Harlequin Ichthyosis, dashing around the rugby pitches of Hong Kong!

When cyberbullies pushed her to the brink of suicide, we stuck together as a family, and came through it as a family. There are scars, of course there are, but everyone’s got issues, both visible and invisible.

We hope our book, The Girl Behind The Face, and Facebook page will contribute to giving courage to others to negotiate the cruel aspects of everyday life so as to be able to celebrate life’s simple joys, as well as encourage people to do some good for others.”

May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

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