Oct 2, 2018

God created, mom advocated, and I'm killing it at 30

Where have I been all my life? Trailblazing my next chapter

Where have I been all my life? A few years back I was scrolling on Pinterest and saw a quote that absolutely resonated with me, "Be who you needed when you were younger." It was around that time when I had taken ownership over my life, my story and my future.

I am a preschool educator, and an advocate for people with differences and disabilities. I am entrapreneur and an author. I am a go getter and dreamer. I often hesitate to lead with this list of titles, but why should I? I'm killing it at 30. I'm killing it at 30, because I now own the manuscript of my life.

I was born with a laundry list of craniofacial anomalies that at the time seemed unrelated, according to the doctors. I had a cleft lip and cleft palate, craniosynostosis, midline deformity... etc.

Fast forward many years later and we have been introduced to the term Craniofrontonasal syndrome- in short, the laundry list. When I was a kid, my mom kept my days filled. We went to the park, we went to the museums, I had play dates, went to school, just like everyone else. I also had surgeries scheduled, tests scheduled, doctor appointments, specialists and the inevitable sick days. Being a kid with any differences can be isolating, lonely and terrifying, at least it was in the 90s. Any time I had to go to a doctor appointment, a surgery prep, or the like, I would nearly have a full fledged panic attack. These moments were completely out of my control, and so, I would give in to the fear of the unknown and in later years, the fear of the known. My mom was always there to make sure that I was well taken care of. My mom was my advocate when I was younger when I didn't know how to speak up for myself.

Growing up I knew nobody else that looked like me, or had any related experiences, and while times with friends and family were joyful, I unknowingly had wished someone would be able to relate to me. There were many times during those important developmental years that I had cried and wished that I looked "normal." I questioned why I had to go through so many surgeries, why people stared, why children could be so rude. These were things I thought about as a child, along with all the typical thoughts of the joys and struggles.

Flash forward to college. My mom had read an article in the local newspaper about a little girl and her mom. The little girl was born with Apert Syndrome. Her mom had been traveling to schools with her daughter talking about differences and choosing kindness. It happened to be that we connected and Kerry and Mary Cate would be visiting a school not too far. My mom and I had the opportunity to meet the Lynchs and hear Kerry speak. For the first time in my life, I had met someone who understood. We have since become wonderful friends.

At the time, I was majoring in photography and we had been challenged to do our final exhibition on something that had strong meaning to us. Another first, I had finally found an outlet to express my feelings about my own experiences with my physical differences. The photo exhibition was an incredible success. This was a pivotal moment.

From that point on I had a way to gain control over my story. Craniofrontonasal Syndrome may have dictated my history but I would dictate my future. Since then I have found a community, my tribe, an incredible world of people with craniofacial differences, with all types of differences, people that get it. I felt that I found long lost family, family that I never knew existed.

I have spoken at a dozen and a half schools, camps and community programs in the past three years, started a platform to promote kindness, awareness and understanding of physical differences. I have coauthored a children's book, The Courage to Be Kind, about this topic and I have been part of several campaigns for non profits with a similar message.

I am proud of who I am becoming. I have fought, clawed and crawled to get to this point and I am nowhere near finished. Craniofrontonasal syndrome no longer owns me, but it will always be a part of me, affecting me in various ways but I would not be the person I am today without it.

If I can be of support, guidance and hope for one child or parent of a child born with a craniofacial syndrome or anomaly, I am fulfilled.