Strength and Courage
By Beth Wenger - Spring 2011

Long after the corrective portion of my life was behind me, and right in the middle of trying to figure out the woman I am supposed to be, I had a great need to find someone I could really relate to. I needed to find someone who had endured craniofacial defects and reconstructive surgeries like I had. So, as any modern girl would do, I turned to the Internet.

In my search, I stumbled upon the CCA website. CCA didn’t exist when I was growing up and going through most of my surgeries (and neither did the Internet). Before I discovered this vast resource, I knew of no one who had experienced anything like I had. For the first time, I found that the lonely part of me so inherently tied to the medical issues of my past was no longer alone. In the faces and stories posted on ccakids.org, I not only found good company, I found a common bond as well.

Enduring facial differences and massive reconstructive surgeries from the age of 6 weeks to 22 years gave me strength and courage. Through stories written in CCA newsletters, I have since found this strength to be quite common among young people who endured the same or similar procedures (and in many cases significantly more). These children— and probably all children who have craniofacial differences—have incredible grit.

The grit I developed so early in life through my medical hurdles overflowed into all aspects of my life. It has propelled me forward through many challenges and into many great experiences and rewarding opportunities. At the same time, I have always loathed that I was “different,” that I had a defect and that I had all that stuff to deal with as a result of it. (And, boy, there is a lot of stuff!)

In spite of all that stuff, the summer before I entered sixth grade I became so determined to not be the girl with the birth defect, regardless of how well doctors could make me look “normal.” I worked like crazy from that time forward to become the girl and later the woman who “did all this and had all that going on.” The birth defect and the facial differences would just be a fact of life, a side note for those who really had to know.

From that point, defining myself as I saw fit became my life’s goal. In fact, it has been my only true, deep-in-my-core goal. It has been a goal that has pushed me forward to have many, many remarkable and fun adventures and experiences.

With a no-limits attitude, most days it has been easy to get up and try and do, win or lose, succeed or fail, or just be satisfied with the effort and outcome. And some days, even still, I have to remind myself of the strength and courage I possess—and where it comes from—before I can take those big bold steps to go after whatever I desire.

Through all my pursuits, I have learned that having craniosynostosis will always be a part of me. But it is, just as I had long ago hoped, not at all who I am.

Beth Wenger is Program Manager for KEEN Greater DC, a nonprofit organization providing free recreational opportunities to children and young adults with disabilities. Beth is also a professional writer and editor with a B.S. in Psychology and Marketing/ Business Administration from Albright College in Reading, PA, and a Publication Specialist Certificate from George Washington University.

If you would like to share your story with CCA, please send an email to Annie Reeves at areeves@ccakids.com. If your story is chosen, with your permission, we will edit and publish it in the CCA newsletter, on the Web site or use it for public awareness programs. Not all stories will be selected.

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