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 ...

Make a Muscle for Parker

My experiences with surgeries and scars never broke me.  In fact, they made me stronger and empowered me to look for ways to make the world a better place in any way I could.  One of those ways is by fundraising for charities. I am running the Star Wars 10K in Walt Disney World as a member of Team Muscle Makers for UCMD (Ulrich Congenital Muscular Dystrophy).  All proceeds from this design will benefit children and their families who utilize the MDA facilities in California.  The founder of this organization has a son, Parker, with UCMD and she has dedicated so much time and effort into giving back to the association that has shown so much support for her own family. Purchase this shirt and you will ...

A Letter to My Mockers

To the two boys in The Fresh Market yesterday who pointed and snickered at me: I was too taken aback to confront you in the moment, but since I’ve had the time to process your asinine behavior, I have something I’d like to say to you. Grow the f--- up. You were only about 12 or 13 years old but that doesn’t excuse your behavior. You are never too young (or too old0 to be respectful of someone’s differences. I’ve dealt with my fair share of stares and lingering gazes over the years; I’ve heard the questions kids asked their parents about me; I’ve seen kids point in my direction to show their siblings or friends. But never in my 33 years have I witnessed and knew with ...

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 ...

A new year means it’s time to be…selfish.

Today is the first day of the rest of your life. There’s nothing like starting off a brand new year with a cliché, which is what I’m sure most of you are doing today (hello New Year’s resolutions!). Like many of you, I often quickly forget about these resolutions around, eh, January 2nd.  Instead of setting myself up for obvious failure, I’m opting to set a motto for 2016. 2016 - the year of me This is my chance to be absolutely, shamelessly selfish and focus first and foremost on myself. I grew tremendously in the last twelve months, but I’m eager to push my own personal boundaries even further. By focusing on myself, I make reaching my goals a priority. This will raise the quality of ...

Ohana Means Family

I’ve had ravens fluttering in my stomach all day long. Even with a pile of work on my plate, I couldn’t suppress the anxious feeling rising in my gut. In the past, I’ve always been quite steady when death presented itself. It’s a part of life, after all. However, up until now, I’ve only witnessed passing's caused by old age and illness, never by tragedy. Over the weekend, a box truck barreled into the back of a car carrying a father and his two young children, killing the 4-year-old son, Nicholas, and seriously injuring the father and 2-year-old daughter. The wife is a coworker of mine who was out of the country at the time of the accident and whose life will never, ever be the ...

‘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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