Let me first define Moebius Syndrome, and then tell you why having Moebius doesn’t define me. Moebius Syndrome is: a condition that occurs from birth, non-progressive facial weakness, and the inability to move the eye away from the nose (one or both eyes) These two symptoms are due to impairment in the facial nerve (cranial nerve 7) and the abducens nerve (cranial nerve 6), respectively. The condition is extremely rare, with roughly 2 to 20 cases per million births. There are varying degrees of severity. Those of us who have Moebius cannot form facial expressions, like smiling, frowning, or raising our eyebrows.

Yes, I have Moebius but I am more than my ailment. My diagnosis doesn’t define me. I, Tina, am a wife, mother, friend, advocate, and someone who tries to love her neighbor more than herself, someone who does her best to make this world a better place.

I had never even heard of Moebius Syndrome until I was 36 years old when I was diagnosed. I always knew I had some type of neurological defect, but it was never precisely diagnosed.

As a child in the late ‘70’s and early ‘80’s, my mom was told I had Down Syndrome, was mostly blind and would be completely blind eventually, (I was even taught Braille and went to the Fort Worth State School for the blind until I was 4). Every time I would get a new diagnosis (per my mother) I would do something someone with that particular diagnosis should be incapable of doing and the neurologist would come up with another thing I must have instead. I had a pretty rough childhood, not at home, but at school and in public. In first grade my mother was urged to put me in remedial classes because I couldn’t see and I’m sure I was a challenge to take care of when the teacher had 20 other students. My mom would not allow this though. She always made sure all the educators knew that just because I couldn’t see well, my hands shook a bit (I have tremors), my balance wasn’t the greatest, and my face looked different, that my mind was sharp, maybe sharper than most and that I could excel in a normal classroom. I don’t know where I’d be today if she hadn’t fought for me the way she did.

I used to get bullied as an elementary student quite a bit. One of my earliest memories is children gathering around me in a circle, laughing and pushing me down on the concrete. I’d get back up and they would push me down…over and over again. The physical bullying got better as I got older and moved into middle school, but it was replaced by mean attitudes and hateful words, which can hurt just as much. Again, I don’t know what I would have done if I hadn’t had my sweet mama. I remember being in 7th grade sitting on my bed, crying, because kids had called me the R word earlier that day. (I absolutely hate that word) when my mom held me and told me something I would end up carrying with me, even to this day. She said, “Tina, hurt people, hurt people. When they hurt you, it makes them feel superior just for a moment. You have the choice of going out and hurting someone or even hurting the people who hurt you back, and it may even make you feel better for a little while, but it will be very short lived. Or you could pray for them. Pray that God takes away their hurt, and He may even use you to do it. I know that this is a lot to bear, and you don’t have to do it alone. When it gets to be too much, you can always come home. I will always hold you while you cry because I love you. You are my life. I will be beside you when you take all that pain and drop it at Jesus’ feet.” And she was, even when I was an adult. She was there and was my safe place until the day she died.

So, while Moebius Syndrome doesn’t define me, it has helped to shape me into who I am today. Having it has given me compassion, empathy, and most importantly, it’s given me strength. It took me 40 years to come to terms with the fact that I really cannot change what my face looks like. I used to be obsessed with “looking normal”. Now I’ve learned not to concentrate on the things I can’t change. My face is what it is. But what I can control is how I treat others, what I give, and who I am inside. Looks are temporary but the things I mentioned above are eternal. So, while it may seem that I have a resting B face, I hope everyone knows that inside, I’m always smiling with my heart