So, I have hemifacial microsomia. To me, that’s just a big word saying there’s multiple things “wrong” with me. Technically, it means “a congenital disorder that affects the development of the lower half of the face, most commonly the ears, the mouth and the mandible. It usually occurs on one side of the face, but both sides are sometimes affected.” I’ve also been described as having Goldenhar syndrome, Treacher Collins (but we’re pretty sure that’s not correct), and Pierre Robin sequence. With this disorder, I have micrognathia, bilateral atresia, and a unilateral complete cleft lip and palate. Micrognathia basically means small, retracted jaw (mandible). The easiest way to describe my natural bilateral atresia appearance like thick pieces of gum were stuck to my head where my ears should have been. So, as I say, I literally don’t have ears. The technical description is Grade 3 Bilateral Atresia. The gum analogy makes more sense to me.

I got my first hearing when I was two weeks old. I am so so thankful for the early intervention and access to language. I’ve worn a hearing aid all my life. The kinds I use are “bone conduction” to help with my conductive hearing loss. I’ve really only had two kinds in my 22 years, because those have been the only types available for me. Let me tell you, digital technology has been a revolution for the world. Not just because of phones and internets and whatnot. I didn’t learn firsthand that refrigerators made noise until I was 17! Crazy. So thankful to live in this age.

With these deformities/birth defects/abnormalities/malformations or whatever other name has been used to define my face over the years, I’ve had a lot of accompanying medical visits and surgeries. I had my first surgery to start to reconstruct my cleft lip and palate at 3 months old. Obviously I don’t remember it, but I have a lot of cute pictures of me in my Pooh Bear onesie with splints on my arms so I didn’t mess with my stitches. I’ve had at least 10 surgeries in my lifetime- I can’t remember the exact number, they’re all a blur. Lots of going to sleep and waking up is all I recall. A plus side of this is I used to have a really high pain tolerance! I’ve become a baby as I’ve gotten older, so definitely “used to”.

Seeing so many doctors when I was younger made me feel like a specimen. Something to be studied. Something to be fixed. Something that wasn’t quite right. I remember one time I was probably 10 (? I really have no idea how old I was). I went to see an allergist for my nose problems (another complication of my syndrome). I was there for ONE doctor. That ONE doctor that was supposed to be assessing me for a sinus infection brought in SEVEN doctors (residents, interns) to come look at my ears and everything else. I felt so small. They addressed my mom and did not address me. They poked, proded, looked. I felt like a subject, not an actual person. Because of this instance and others like it, I have always felt like people are looking at me, assessing me, diagnosing me. They see my differences before they see me.

When I was younger, I used to tell my mom that when I was born, I think God wasn’t quite done with me yet. Now that I’m older- and have a better grip on God’s workings- I know that this is exactly how he wanted me. I can’t waste my life wishing I could hear, or was “prettier” or more “normal” looking. Because I have wasted a lot of time thinking those things, and those thoughts still to creep up on me. I know it sounds like a Christian cliché, but reading Psalm 139:13-16 is a real reminder that God doesn’t make mistakes. He knows, he creates, and he has a purpose for me. Even when I’m caught in the depths of insecurity, shame, and doubt God still has that plan established for me.

                        Psalm 139:14-16 

¹⁴ I praise you because I am fearfully and wonderfully made;
             your works are wonderful,
            I know that full well.
¹⁵ My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

I’m not quite sure why exactly God made me like this: “unfinished”, almost. I do know God is calling me to share my story. To encourage and educate others. To work to normalize disabilities and differences. To show that you don’t need ears to be strong and courageous (Deuteronomy 31:6). To prove that God is an artist creates beautiful people that don’t all look the same.