Our family response to the ignorance and hate.

“She’d be better off dead.” “She should’ve been aborted.” “She’ll have to be sterilized.”

Why do people think Tina and I, or any parent, have ever wanted to be told this?

The Social Welfare Department told Tina and me a doctor had to sign-off on our ability to cope psychologically with Mui’s expected death in infancy before adoption could be considered.

But no one taught us how to cope when Mui survived.

One qualified psychologist had Mui shout: ‘1, 2, 3… be happy.’ Stupid. So Tina and I had to figure out how to support Mui ourselves.

There are no days off. Ignorance is confronted daily. Kids with special needs don’t raise themselves. It takes commitment, resilience and hard work and still does. We’ve chosen to do that with a smile even if a smile is sometimes just the best mask to get you through the day. So even though Mui was abandoned and hidden because of her appearance, she’s grown up smiling too!

But the ignorance continues… and “just ignore it” doesn’t work. You confront it, deal with it and move forward. That’s why we’ve shared our family story.

MUI says:

“I am an avid user of Instagram and I use it to share bits about my life. I don’t feel like I am a spokesperson for Ichthyosis particularly but I also like to try and educate if I can but I don’t force people to think a certain way.

This week, someone posted a comment under a photo of a baby with HI side by side with me (see above). They wrote: “should have aborted that thing Jesus Christ.” I wrote underneath, “thanks for saying that. Makes me feel fantastic about being wanted in the world”.

I have no doubt that if my birth parents found it about my HI early enough, they would have terminated the pregnancy.

I was adopted and I’m glad my parents gave me a chance in life when everyone else walked away.

The fact that Instagram person wrote this comment felt like a slap in the face because I still get affected by comments like this. It’s hurtful. This user doesn’t know me. And I don’t know them.

What she didn’t realise was that her comment kind of hit a chord with me. Words can be incredibly powerful. They stayed with me for much of the day. She will forget about what she wrote. I won’t do so as easily.”

https://www.thegirlbehindtheface.com

Ichthyosis & Halloween…

Once upon a time one Halloween… Tina, Mui and I walked through Kowloon. A woman recoiled on seeing Mui, then laughed... then stared... then screamed and screamed. The woman had mistaken Mui’s face for a mask… then realised it wasn't. 

Mui ran off in streams of tears.

Such screaming happened weekly if not daily on occasion. As parents, we dealt with it each time with Mui at home. Each time we talked it through, came up with answers and solutions, discussed it honestly and openly till Mui was comfortable. 

Mui still has difficulties coming to terms with her skin condition. She’s gone through years of (very loud!) denial of all things Ichthyosis. She isn’t as vigilant with her skin care routine as she should be.

People still send hate: “The b*tch is a f*cking ghoul… face it.”

People still say: “Just ignore it!” though wouldn’t if it were racially motivated hate. 

Too many turn their heads and look away.

In school one of Mui’s friends once piped up: “Mui won’t need a mask for Halloween!”

As parents we asked the teachers to consider a soft discussion of the young girl’s choice of words. We offered to come in to school and present a relaxed talk, though the offer was declined.

These days Mui handles Halloween differently. Her choice.

MUI says: “Everyone goes all out and splashes out on Halloween stuff and costumes. Thankfully I have a cheaper alternative! (Mui's photo pointing to her own face) I am deadly serious. There is an upside to Ichthyosis! This is meant to be a funny post!”

Dealing with Ichthyosis and Halloween remains each individual’s choice.

We’d love to hear your thoughts.

To help our story help other parents and children come to terms with their choices, simply “share” and “like” our Facebook page: https://www.facebook.com/GirlBehindTheFace

For more on our story please visit our new website: https://www.thegirlbehindtheface.com

Thanks. Tina, Mui & me (Rog)

This Blog first appeared on: The Girl Behind The Face

I'm out of hospital after 11 days on IV antibiotics. For a few days Tina was terrified. She was there for me day and night... as she was, aged 26, for Mui during Mui’s early years of endless hospitalisations. Tina is one amazing woman.

Mui’s psychiatrist says Mui processes empathy “differently”. Nevertheless, Mui has many great qualities. And she is never still! 

MUI says: “I took part in a fitness challenge called Project Change 2018 this summer. A 6 week body transformation challenge. For me, it was never about losing or gaining weight. I yo-yoed on the scales. Didn’t care. I won the challenge in a three way tie.

Every contestant was told to pick a charity. 

Once, I didn’t want anything to do with Ichthyosis. But because of our platform, The Girl Behind The Face, I was able to confront the fact that I have HI. I have been taught by my parents to give everything a go. I wanted to show people that no matter your limitations, don’t let that stop you from doing your thing.”

TINA says: As The Girl Behind The Face, the three of us have raised HK$36,515 for Ichthyosis related causes. Mui’s Project Change win means US$243 for the Foundation for Ichthyosis & Related Skin Types.

Here’s a video of Mui’s Project Challenge:

https://www.facebook.com/716884821996742/videos/2101576209861741/

To help our story help other parents and children simply “share” and “like” our Facebook page.

For more on our story and future charity challenges, please visit our new website: https://www.thegirlbehindtheface.com  

Thanks Rog