When did my parents realize I was different? From what I understand, at my one week check-up my new pediatrician just kept repeating that there is something unusual. She didn’t know what it was but invited every doctor in the office to come and admire my unique appearance (lol). That’s when they referred me to several local doctors that checked me over and all they could come up with is that I was unique and looked different. At about 18 months my pediatrician referred my parents to University of Michigan, Mott Children’s Hospital in Ann Arbor where they immediately pinpointed the distinct features of Crouzon’s Syndrome.
After MRI’s and genetic testing the diagnosis was confirmed and the side effects from the syndrome started to be revealed one at a time. First I was found to have a Chiari Malformation, which was corrected with the reconstruction of the bones in the back of my skull to allow more room for brain development. Then I was diagnosed with Hydrocephalus and had a shunt put in. My facial surgeries started at age 4 when I had my upper eye sockets and forehead reconstructed (about a 20 hour procedure). It was about that time they discovered optic nerve damage as well leaving me with little to no vision in the left eye. At age 6 I had my lower eye sockets, cheekbones and upper jaw bone reconstructed (a 21 hour surgery). These were the procedures I have little no memory of.
My parents say that I was a very outgoing child up until I started school. This is when I began to notice people treating me differently. Whether we were in the grocery store, restaurants, or a public place in general, people would stare and whisper. I remember those moments where we would be sitting down at a restaurant and my dad would get so angry because people would be staring. I distinctly remember a time where a woman and her children were staring and whispering in the grocery store. Eventually my little sister went right up to them and told them to knock it off. These things were and still can be common occurrences.
The truth is, up until I was about ten years old I did not really know that I had Crouzons. I had just assumed every child went to the doctors as much as I did, and underwent surgeries. It was not until I started hearing things from my peers in the fourth grade that I really started to acknowledge the difference. What really made a difference was when I had to wear a metal headgear (RED System) for three months to pull my upper jaw forward. During this process and healing, I was homeschooled so I did not have to see my school peers.
My only social outlets were church and Girl Scouts, which I was very excited to attend because I can remember wanting to go somewhere other than a doctor’s office or hospital. I was not sure if I was prepared to face my peers, and honestly? I wasn’t. What a life-changing experience that was. There are always cliques and groups in social settings. When I entered my Girl Scout meeting, I realized it was me against the world. My troop leader looked like she did not even know how this was going to go. As my troop entered the room it was completely silent. Their conversations stopped. They sat down with each other and looked genuinely terrified at what they saw. My mom tried to explain what I had on and what was going on, but it was then and there that I knew nothing would be the same.
By the next day, most of my school peers knew what was going on with me. I did not see most of them until the next year of school and they could tell something was different. Something was different. I was a different person. I realized that I was never going to be like everyone else, and there were people that would never accept me because of my appearance. In the movies, bullying is getting attacked physically or by words. The bullying I endured was different. With the exception of a few close friends, people made me feel invisible, like I didn’t belong.
Tomorrow I will write more in depth about the bullying and the effects it had on me, especially jr. high and high school years.