I thought it best to begin this journey by sharing my story and the heart behind Defy The Diagnosis. There’s a lot of ground to cover but I’ll start with a brief-ish overview of how I got here.
I was born with a condition called OAVS (Oculo-Auriculo-Vertebral Spectrum). Simply put, it’s a combination of three rare disorders that involve malformations of the eyes, ears, and spine. In my case, various deformities such as microtia (“little ear”) and mandibular hypoplasia (undersized jaw) resulted in the entire left side of my face being underdeveloped. As you would expect, my parents were overwhelmed when they were given the news moments after my birth. Thankfully, there was a lot of extended family there to help comfort and support them.
Throughout the next few days, we continued to find out more of how OAVS was going to affect my life, such as one of my eyes not opening for four days, being unable to nurse normally because of my jaw condition and acid reflux, and not gaining weight because of FTT (failure to thrive). The most pressing matter, though, was the discovery of two heart defects known as ASD and VSD (holes or “heart murmurs”). We went to see a cardiologist who ended up scheduling us for open heart surgery to close the holes. Before taking me back to the operating room, the doctor pulled out his stethoscope to check for any other heartbeat irregularities. After looking puzzled by what he heard, he went to grab another stethoscope. A second listen resulted in the discovery that both holes had miraculously disappeared. The Lord was working in my life before I was even able to comprehend it.
The next issue to address was finding out that because of my underdeveloped left side, I would only be able to hear out of my right ear. This meant that I would need to see an otolaryngologist (ENT doctor) on a regular basis. At our first visit, he told us that a bone-anchored hearing aid and/or reconstructive surgery would be possible but not until I was at least five years old. Jaw surgery was also put on the table, along with voice therapy and oral motor exercises which my mom was able to help with since she is a speech pathologist. After spending weeks in prayer and doing research to find the best craniofacial clinic for my specific condition, we ended up at Dallas Children’s Hospital, under the care of Dr. Craig Hobar. My family and I are forever grateful for how he cared for and loved us throughout the entire time that I was his patient.
Altogether, I’ve had 15 reconstructive surgeries spread out over 18 years. The list includes a tissue expander placed in my cheek, rib grafting, groin grafting, a palatal expander, two instances of braces, a titanium plate put into my chin to draw attention away from the “affected” side, and a coral reef implant used to build my jaw and ear. Often times, it was difficult to see the “big picture” through all the scar tissue and deformities. Even though every surgery was intended to improve the external structure and physical appearance of my face, the grueling recovery period and stares I would get every time that I went out in public made me want to give up on the process entirely. However, God’s sovereignty and grace was evident in every moment.
Because of the differences in my facial structure, I’ve dealt with self-image issues and insecurity for as long as I can remember. I’ll never forget the first incident where a kid called me “Barbie,” which doesn’t seem that bad until you realize that someone making fun of your name is all it takes for your self-esteem to become nonexistent. The impact it has on your life is profound. You see people differently, you feel as if people see you differently, and you act out of defeat, instead of the victory that Christ affords us through the Cross. That truth didn’t make sense to me at first, but I’m learning how to embrace it more and more each day.
Just before I went into middle school, I became interested in music, specifically drums. I ended up auditioning for the band and got into the percussion program. However, there’s more to this story that makes it yet another instance of the Lord’s power and provision. The way that auditions worked at my middle school was that you had to try out on two other instruments before percussion, since every preteen wanted to be a drummer. Because of my jaw condition, proper embouchure (the way that a wind instrument player applies their mouth to the mouthpiece) wasn’t an option for me so my parents spoke to the band director and pleaded with him to make an exception for me. Luckily, my admittance into the percussion program ended up being earned entirely by merit. To this day, drumming is one of my greatest passions and is the means by which I serve my church and the Kingdom as a whole. Only God could orchestrate a situation where my only option became an opportunity to glorify Him. It makes no sense that I would also be passionate about producing music, which relies heavily on being able to perceive sound from both ears, but that was precisely why the Lord gave me these specific gifts, so that only He could get the credit.
Recently, a friend of mine spoke a word over my life that beautifully articulates why I believe the Lord has created me with purpose beyond my understanding:
I felt God tell me that your ear is not of the world; it’s a heavenly gift and a Kingdom-blessed ear. God gave it to you so that as a worship leader, you can hear what the people need from the Kingdom and then step out in God’s name to lead straight from His Word.
My encouragement to you is that your diagnosis does not define you. Your identity is only what God says about you, not labels that society places on you, a medical condition, or anything of this world. The heart of our Father is to use what we call a weakness as a tool to encourage others and glorify Him in everything that we do. This is just the beginning of an ongoing discussion, but I hope that my journey of learning how to defy the diagnosis will encourage you to defy yours.