Finding My Craniofacial Tribe

I was born different. There’s no denying that. Maybe it’s not as noticeable now, but the truth is I wasn’t like all of my peers. Not completely anyways. I had appointments with reconstructive surgeons. I received copious amounts of stares out in public. And I knew the ins and outs of my local children’s hospital. It was all thanks to my craniofacial abnormality.  But I didn’t mind being different then and I certainly don’t mind it now either. It’s who I am and I’ve learned to embrace it. In high school, a teacher posed a question to my class of predominantly Caucasian students. How many of us had ever been the minority? No one raised a hand. It wasn’t until a while later that I realized I ...

How To Ask Me About My Unique Appearance

There are many reasons why I write: to tell my unfiltered story, to bond with others dealing with craniofacial differences, and to educate those who are not. I have always wished that strangers knew more about Treacher Collins syndrome so they could see me the way I see myself. I think people forget that I don’t stare at my uniqueness all day long. The only time I see what I look like is in a mirror or photos. The rest of the time I just witness life around me through my own eyes, the way everyone else does. I see the bridge of my nose, the tips of my bangs, and on occasion, the rim of my glasses. I truly forget that I am even ...

Diary of a Beautiful Disaster Book Launch Recap

Monday, March 27th was a dream come true. It’s when I officially celebrated the launch of Diary of a Beautiful Disaster with the world. (OK, maybe the world is a bit exaggerated, but at least with my friends and family.) I’ve never been a huge enthusiast of public speaking. I don’t mind it. I don’t hate it either. I just don’t love it. Then again, I’m not much of a talker in general, am I? I’m also a little self-conscious of the sound of my voice. It’s very common for people with craniofacial anomalies to have speech impediments. While I did work extraordinarily hard as a child to learn to speak clearly and properly, there’s no denying that my narrow nasal passage complicates things. I definitely sound ...

I am in Control

I often wish I were quick-witted. I wish I knew what to say the very moment it needed to be said. For instance, the other night in an elevator a preteen was standing across from me, noticed something weird about my face, and ran over to her friend to whisper in her ear. Her friend then ran over to stand across from me to stare. I thought to myself: are you serious right now? I need to say something. But all I could blurt out was a very quick "I know you're looking at me!" I wish I had said something stronger. Not spiteful nor malicious, just more impactful. Why say anything you ask? Because if someone is going to be that obvious about my face, I'm going ...

When a Perfectionist Writes a Book

It’s here! It’s finally here! It’s been a year since I found out I would be writing a book and having it published, but in many ways, it feels like I’ve been waiting for this day my entire life. I don’t necessarily believe in fate or destiny, but I have always known I would do something meaningful with my life. For thirty-three years I struggled to figure out how exactly I would do that. When KiCam Projects contacted me in February 2016, I knew I had my answer. It was too perfect to pass up, even if it meant completing a book in roughly four months while still working my full time job. I had never backed down from a challenge before. Why start then? Now that the ...

An Open Letter to the Mother of a Newborn with Treacher Collins Syndrome

Last night, my cousin tagged me in a Facebook post about a newborn baby with Treacher Collins Syndrome.  When first finding out she was pregnant, the biological mother planned on giving her up for adoption.  A facial anomaly was unknown during the pregnancy and the mother simply couldn't handle a child at the time.  Adoptive parents were chosen and on the day of the birth, they waited at the hospital for their new baby to arrive.  Once she made her appearance into the world, the adoptive mother went to meet her new daughter, but quickly emerged from the room crying and left the hospital never to return.  Adopting a child with preexisting conditions requires certain approvals that this family hadn't obtained, nor had they known ...

Confronting My Reality – Part 2

If you haven’t already, read Part 1 of this essay for a little bit of background.   A few months ago, I found myself in another predicament of choosing whether to confront my reality or to ignore it. A friend suggested I read a best-selling book about a boy with an extreme craniofacial abnormality. She had been reading it with her students and thought I would appreciate the message, as it is similar to my own. I once again skirted around the idea of celebrating someone else’s uniqueness because I didn’t want to be reminded of mine. Was I worried I would have nothing in common with the main character? Or was I afraid of the similarities?   I finally decided to concede. The book is Wonder written by ...

Confronting My Reality – Part 1

I’ve never been one to confront my uneasiness with a head-on crash; I’d rather cautiously navigate around my feelings without leaving an emotional wreck in my wake. Believe me when I say my stoicism runs deeper than just the mask you see. With a heavy dose of irony I tell you that as vocal as I am about celebrating one’s uniqueness, there are times I avoid mine at all cost. If I’m urged to share the stage with others who hold similar life experiences, I momentarily lose interest in being a gladiator for self-acceptance. It becomes both a reminder that far too many of us share similar struggles and a realization that my hardships pale in comparison to others in paralleled circumstances. For example, the severity ...

An Open Letter to Valentine’s Day from a Perpetually Single Female

Dear Valentine’s Day, We don’t know each other well – strike that – we don’t know each other at all. Aside from the few brief times in elementary school we were forced to converge for the sake of the class, I’ve been nothing more than a bystander to you for 32 years. I watched everyone else partake in your love-induced debauchery while I stood alone all that time. In case you missed the memo, I’ve been single since day one and have had no chance to celebrate you properly (read more about that here). You heighten my awareness of that annually on February 14th. I question my value when you come to town because it seems like time after time I fail to prove that I ...

‘Cause it makes me that much stronger, makes me work a little bit harder

I finally understand the anxiety behind releasing a second album or a movie sequel. Expectations soar and you’re left wondering how you’re going to compete with your initial success, not that my last blog post was “initial.” I posted 57 essays prior to that one game-changing post. The others were meaningless compared to the brutal honesty I shared a couple weeks ago, and since I wrote that, I don’t want to return to writing fluff. I enjoyed baring my soul, but I wonder how much soul is left to bare? How can I top it? There’s my issue: I’m entirely too competitive for my own good. I always search for ways to improve. I can’t face that life isn’t a steady climb upwards. It’s a rollercoaster ...

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