Late one evening while browsing my email, I discovered that someone had sent me a message using the “Contact Me” form on my blog, EEC Chick.
So happy to find your blog and that you have dedicated time to help others with EEC. My wife and I just found last week she is carrying a child with likely EEC…Your blog has given us a sense of humanity, inspiration and hope. Finding your words, thoughts and accomplishments have helped us make the next step towards acceptance and positivity.
My heart swelled as I read the email. To think that all these words I’ve written had actually reached people who needed to read them. What a rewarding feeling!
Creating a blog about EEC was something I had wanted to do for years. I was hesitant though, because I didn’t necessarily want the whole world knowing that I wasn’t “normal.” Of course I knew people could look at me and see that there were things about me that were different, but the truth was mostly shrouded in secret.
In 2011, when I decided to get involved with the National Foundation for Ectodermal Dysplasias (NFED), I had been going through a period of figuring out how I could do something to give back to the world. I felt that perhaps getting involved with an organization that supported families and individuals who had similar challenges as I would be a good place to start. It was in going to that first conference that I began to feel cracks in the façade I had built up to protect myself all of my life.
I became a liaison and began the first steps of “coming out” about my syndrome. Part of being a liaison meant that I would be listed on the NFED page, with a photo and a short bio. A part of me worried that people I worked with or wanted to impress would come across this and think less of me because I was a person with a condition – imperfect. But I also felt a sense of pride in stepping forward and letting my syndrome be named.
It wasn’t until a few years later that I finally decided to write a goals statement and plan out a blog. I wanted to share my stories to show that living with EEC isn’t a terrible thing. I wanted to pave the way for others, to let them see that they or their children could have a pretty normal life, despite having EEC. I also felt that blogging about myself and my experiences would be a therapeutic way for me to get over some of the things that happened in my life, and to realize my strengths.
For the first several posts I focused on things that had happened to me a very long time ago. It was easier to share things that had happened when I was very young, because it was almost like I was writing about someone else. Yet there was a very personal element to it all. It was like travelling back in time to my childhood and the thoughts and fears I had as a little girl.
I shared the blog with my friends from the NFED, and with my family and a few close friends, but I didn’t make an effort to spread the word outside of that group. After a while, my blog began to show up in Google searches. Through the WordPress stats page I could see how many visitors came in through searches, and in some cases I could even see what words they used in their search. The more I wrote, the more visitors trickled in.
When I received the email mentioned above, I had been blogging as EEC Chick for about a year and a half. I was getting to a point where I was thinking that maybe I had written enough about EEC and that perhaps I should move on to another topic.
Receiving that email from this young family (Dennis and Lindsay Claire) reminded me that while I may feel like I’ve written all I can about EEC, I will never know when someone out there will need to read about it.
I responded to Dennis and thanked him for his kind words. I recommended that he get in touch with the NFED, and conveniently, there was a regional conference coming up in a few weeks where we could actually meet in person.
Three weeks and a few emails later, I was face-to-face with Dennis, Lindsay and little Denny, who had made the trek all the way from Maine to White Plains, New York for the conference. Throughout the day, I saw many different people approach Dennis to ask his story and then become amazed at how his family had found their way to the NFED.
Writing and sharing my story has led at least one family to the NFED, and in so doing, has given them hope and a positive outlook for the future of their affected child. Writing has also helped me to become more comfortable talking about my syndrome with anyone. I find myself telling coworkers about my artificial teeth or about my ear troubles – things that my former self would have curled up and died before mentioning publicly. It has given me confidence and a sense of pride in who I am and in what I have been through.
Writing on my blog and on the NFED blog is one way of paying it forward. Being involved with the NFED and volunteering in various ways is another. I know that there is an abundance of love and support in our NFED community and being able to share that joy with others is an incredibly rewarding feeling. I hope that as you read this, you are inspired to share your story and your journey. You never know who might be helped by your efforts.