Doctors Left Their Mark, Now It’s Time to Make Mine

“It’s inspirational that you turned out so well adjusted, considering everything you’ve been through…” 

Inspirational? I’ve just figured out how to live my truth and take every life experience as just that: an experience. All those experiences have pushed me forward and made me stronger as a person. My cousin often tells me that when I tell her stories about growing up.

Today, I am 29 year old, a full time preschool teacher, a published author, a passionate entrepreneur, and a fierce advocate for differences, inclusion and kindness.  

This is how I choose to describe myself, because I've worked hard to reach this point.

I was born with what is now categorized as a craniofacial syndrome called Craniofrontonasal Syndrome. When I was born, back in the eighties, doctors told my parents that my craniofacial differences along with my cleft lip, cleft palate, and midline deformities had nothing to do with one another. Several years back I did my own research and found out that, low and behold, there is in fact was a syndrome which matched my medical history almost perfectly. 

In the span of about 18 years, starting when I was only a few weeks old, I had over 12 surgeries, the most recent at the age of 22. I don’t clearly remember the earlier surgeries, however, they left me with physical and emotional scars.  

My craniofacial differences were physical and did not affect my cognitive functioning. I did have some learning disabilities, but by the time I ended high school, I was in honors classes.  I never let anything in life hold me back. I have always mastered skills and created my own path at my own pace and in my own way. 

While they did not affect my cognitive abilities, my differences did have a rather large effect on how I felt socially, particularly in middle school, but also to some degree in high school. I had many friends but never quite felt like I “fit in”. While my family and friends accepted me with all my quirks and differences, strangers noticed my differences and their looks made it clear to me how they felt. Children would stare and laugh or make comments. Parents would pull their children away, sometimes even staring too. I always smiled and waved as a child, but as I grew older, it became evident that some people were uncomfortable with the unknown and they didn’t understand why I looked different. Of course now I devote most of my days to teaching acceptance and inclusion as well as speaking on how to interact with other people who may look different. 

When I am not advocating in schools or via social media, I am helping out with organizations that share my goals, or teaching, singing and doing photography. I also enjoy spending time with my friends, my mom and my two dogs! 

If I could give advice to parents that have a child with a craniofacial difference, I would tell them, first and foremost, you are not alone and there is a community of people out there waiting to embrace you and tell you its going to be okay! Secondly, I would advise parents to focus on what your child can do rather than what they are struggling with. This strength-based approach has a strange way of helping children accomplish their goals. I would also tell those parents that one day down the line, their children are going to look them in the eye and thank them for all they have done for them. And they will sure as heck mean it with every fiber of their being. I am continually grateful for my family--to them I say, I wouldn’t have been able to get through it without them! 

When I speak to children who notice that they are different, I tell them to embrace that difference! I tell them that there will be some people in the world that may not have the most appropriate ways of interacting with them, but there is also a large community out there who will stand with them and shout their worth.  Though you may feel different, you may very well have a kindness army on your side! Whatever challenges you face, you are stronger, braver and more capable than you even know. Trust that time will heal many of your wounds and build your confidence. This is your life so own it!

About Rena:

Rena Rosen is the founder of ‘Art of Compassion’, a platform dedicated to creating a higher level of acceptance, appreciation and understanding of physical differences among parents and children in our community. Since creating 'Art of Compassion', Rena has spoken at over a dozen schools, summer camps, and organizations. She has co-authored and published the children’s book, The Courage to Be Kind, with her friend Jenny Levin, and has established a large social media following through her Facebook page. She is also involved with ‘Changing the Face of Beauty’, an organization that provides a platform for individuals with disabilities to speak out about inclusion in advertising and media.