Crouton Baby

This may come as a surprise to some of you that know me, but I was born with a genetic disorder called Crouzon (or croutons, as I used to call it) syndrome, which basically means that the bones in my skull were growing prematurely fused together. This prevents the skull from growing “normally” and affects the shape of the head and face. It’s pretty rare, occurs in about 1 in 150,000 people, but because neither of my parent’s have this disorder, it’s extremely rare and surprising that I somehow was born with it. I guess it was just meant to be.

croutonpost

Having Crouzon’s doesn’t change life much, except one major difference: surgeries. As of 2005, I’ve had 13 reconstructive surgeries on my skull and face, of varying severities. I have a few unique skills because of these experiences, like a high tolerance to needles, a love of doctors (the good ones), and an innate desire to research everything (I assume that’s where it comes from). I can also go into a fast food restaurant one time, then return several months later, and the person who took my order originally will remember me. I guess I have a memorable face. Kevin says it’s because I’m a snowflake, I don’t look exactly like anyone else. He’s sweet.

I absolutely loved my childhood, regardless of having surgery. In fact, some very happy memories are associated with those times in my life. The evening before every surgery, my parents and I would go out to dinner (this is a happy memory because I like food, a lot). Every time I woke up from anesthesia, my parents were there with me. Staring at me. Unless they decided to go to Black Eyed Pea. That really only happened one time, but they’ll never live it down. I was showered with attention and always felt loved. Even in the scariest situations, I never felt scared, because I knew I had the absolute best surgeon anyone could ask for (Dr. Jeffrey Fearon – Medical City Dallas).

I’m sharing this now, because I have grown frustrated over the years as I search the internet for other people “like me”, and come up with very little. I know I’m not the only one out there, but it would seem that blogging about this type of thing isn’t very popular. Yet another thing that I would like to change. I hope that someone else with Crouzon’s, or something similar, will find this blog one day. I hope that it will show them that even though you may look different, it doesn’t matter. We all look different.

People have asked me “the miracle question before”, which is: “if you woke up tomorrow, and could have one thing be different, would you choose not to have a genetic disorder?”. My answer to that, every single time, is no. I don’t believe that God gave me Crouzon’s, but I do believe that I was definitely meant to have this life. Just going off of statistics alone, 1 in 150,000 is a lot of people, especially when you throw in the fact that I did not inherit this from anyone in my family. All of my life experiences have contributed to the person that I am today, and I like that person. So, if it ain’t broke, don’t fix it.

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3 Comments

  1. Beautiful! I’m crying here! I’m so proud of you. I know that God didn’t make you have “Crouzon’s” either, but I know that He has let this be your testimony! In those early years, after learning what you had, I wish I had the information that you have now. I was so isolated from the world then and so overwhelmed. Thank you for wanting to help that person that’s just learning their little one has some sort of genetic disorder and doesn’t have a lot of information about it! I love you too little snowflake!

  2. You are a beautiful, precious, Godly Christian young lady! Tom and I are Blessed to have you and your special family as our friends!! We love you all!!!

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