Who I am and Why I’m Here

Hello! Happy New Year!

One of my objectives in 2016 is to improve my blog by posting more often, posting more interesting content and reaching more people. I also want to take the time to read other people’s blogs and make some blog buddies. (If that’s a thing… if not, I’m going to make it a thing.)

I recently saw that WordPress was offering a Blogging 101 course, so I jumped at the chance to join it. Even though I have been blogging here for over two years, there’s always room for improvement.

My first assignment on Blogging 101 is to write a “Who I am and why I’m here” post. It’s funny because lately I’ve been thinking that my reasons for blogging have morphed a bit since I first started on WordPress. I’m thinking about revamping the whole blog to make it more appealing to a wider audience.

Who I Am

I am a 30-something year old woman who has always had an itch to write. Thanks to an encouraging first and second-grade teacher, I began writing “books” at a very young age. I wrote about going on a whale watch with my parents. I wrote about our whole family being sick with the flu (complete with illustrations of each one of us with our tongues hanging out of our mouths). I need to do a post about those books. Noted.

When I was 10, I got my first diary for Christmas and soon began chronicling my life. This habit continues with me to this day, although I definitely don’t write as often as I used to. I make up for it by blogging and sharing my thoughts with whoever wants to read them.

I’m also really into art. Basically I like to create stuff, one way or another.

Aside from the fact that I like to write/create, I happen to have a rare genetic disorder called ectrodactyly ectodermal dysplasia clefting syndrome, or EEC Syndrome. You can read about what it entails in About EEC Chick and What is EEC?

Why I’m Here

I started this blog in 2013 because I was inspired to create a personal account of my life with EEC. I had some childhood situations I was eager to share and process through writing. I wanted to be an example of someone who grew up with EEC and lived to tell about it. I wanted kids with EEC to be able to read my blog and realize that someone else had been through what they’re going through. Etc. Etc.

I did all that and it was pretty great. Sharing long bottled-up stories, like the emotionally scarring day at the water park, or the middle school angst related to not fitting in was actually therapeutic for me. It was almost like a burden had been lifted by sharing those deeply emotional stories.

I also got great feedback from parents with kids with EEC. One mom even printed out my blog posts so her son could read them! It was so cool to hear that. Probably the coolest thing that happened thanks to the blog was meeting the Claire family. They found my blog while researching EEC, which their unborn son had been diagnosed with in utero.

After I wrote all the big things about EEC, I started writing more about my normal life. In 2015, especially, I began writing about things like trips I took, projects I was working on and musings about life. I’m afraid that because of this I may have lost some of my earlier readers. Yet I did gain new readers with the travel blog aspect.

So that’s where I’m at right now… considering whether I should modify the theme of the blog, or start a whole new blog where I can focus more on creative writing and art… I just don’t know at this point. So bear with me please, as I figure it out!

This was a huge amount of detail for “Who I am and why I’m here”, but I guess it’s complicated!

Toastmaster Speech #4

Last night I gave my fourth speech at Toastmasters. As usual, I waited until the last possible moment to write the speech (guess how I spent my 4th of July?) I was editing it up until an hour before I had to go live. I even had to use my notes because I was afraid I was going to forget several points I wanted to make.turtlespeech

That being said, it apparently turned out really well! Either that, or everyone at my Toastmasters club is just super nice and accommodating.

I was going to post the speech here, like I did with my Icebreaker Speech and my Tribute to the Cavalier. My third speech was essentially the umbrella story, so I didn’t bother to post that after I did it.

Anyway, I was going to post my speech, but I was thinking about it as I lounged in bed this morning and I realized that this one might be one that I go back to and revise, rework and improve.

The title of the speech was “Why I Volunteer for the NFED”, and I briefly touched on how I am affected by EEC and what that means. Then I talked a little about how the NFED got started, and how I started out in denial about my issues, but then finally decided to get involved. I talked about how I volunteer as a liaison, a blog manager & contributor, and also about my own blog.

My conclusion was about how I volunteer because I want to give back what I have received from the NFED community over the years. I explained how nice it is when someone contacts me to tell me that my writing has inspired them, or that my example gives them hope for their child’s future.

I also put together a little handout with a brief description of EEC and ectodermal dysplasias, a photo of me and some of my EEC friends at a conference, and then links to the NFED site and blog, and to my own blog. I brought the latest copy of The Educator, the NFED newsletter, and I passed that around too.

Of course, as often happens when you wait until the last minute to do something, you realize you’ve left out
details, or that perhaps you could re-phrase something, or throw in a little anecdote or two.

So I think that’s what I will do… and then maybe I’ll even get someone to record the speech next time and I’ll post it here.

I think it’s interesting that the more I talk about EEC and ectodermal dysplasias, the less shy I am about it. It’s pretty cool to think back over my life and see the progression I’ve made with it… that I used to turn pink with embarrassment if anyone so much as suggested that I was different in some way. Now, I stand up in front of people and actually point out my flaws. Whaat!?

PS. I am now the VP of Public Relations for my local Toastmaster Club. Doesn’t that sound so official?

Magnificent Mammaries

While searching for imagery to use in this post, I came across some unique jewelry.

Today I’m going to talk about breasts. Boobies, melons, sweater-stretchers. Snuggle-pups or sweater kittens. Whatever you call them, there’s no denying that people spend a lot of time thinking about these glorious glands.

In my growing-up years, my friends and I gleefully anticipated growing ample bosoms in our teen years. We practiced by stuffing all manner of padding into our bathing suit tops and strutting around in front of each other. Balled-up socks, balloons, crumpled up paper. We could only imagine the weight and density of the luscious lumps we would surely develop.

When I was about 10 years old, the magic started to happen. Or, as my mom said cheerfully one night as I was getting ready for bed, “The pumpkin seeds are sprouting!” I blushed and acted like I was embarrassed, but inside I was delighted. My Marylin Monroes would be taking the stage before I knew it!

Actual pumpkin seeds sprouting!

In those early days of breast development, I oscillated between feeling proud of my growing girls and feeling unhappy with their lack of size. At first I wore sports bras under large t-shirts (mostly because it was 1990 and that’s what all the girls my age did), but this did nothing to enhance my feminine look. I also worried that the sports bras were actually hindering my development because they were so tight.

In some cruel twist of fate, neither I nor my two best friends got to feel the weight of womanhood on our chests in the way that we had imagined. My two friends were naturally very petite (so much so that I often felt obese in comparison – which, if you’ve seen me in real life you might think is hilarious). In my case, I can probably thank ectodermal dysplasias in some part for my lack of humongous hooters.

Ectodermal dysplasias can affect breast development in some girls and women because it affects glands, and as we all learned early on, breasts contain mammary glands. I consider myself fortunate because I do have natural breasts, albeit little ones. Some forms of ectodermal dysplasias prevent ANY breast development and often the affected women will get breast implants in order to attain a more feminine look.

Throughout my teenage years I always kept some shred of hope that I would hit a growth spurt that would only affect my chest area. I looked at ads for supplements in magazines (though I never actually bought any). I tried exercises, (I must, I must, I must increase my bust!) and the power of positive thinking. I eventually learned that sports bras were not the answer, and switched to bras that actually defined and enhanced my shape.

I never seriously considered breast implants for myself. I won’t say I didn’t think about it, but it was not something I really wanted. The idea of having more surgery was unappealing to me, plus I was always finding other ways to spend my money.

It took me a while, but once I got into my mid-20’s or so, I was pretty happy with my queen jewels, and the rest of my body for that matter. I found out that not all guys want women with enormous eggplants. Plus, as my friend’s mom used to tell us “You’ve got more than he does!” (Though in some situations this is actually not true.)

All joking aside, having small breasts is really pretty great. You can exercise without needing to restrain them. You don’t get under-boob sweat. You never have back pain due to heavy breasts, or get dents in your shoulders from your bra straps. You can sleep on your stomach. You can walk around without people staring at your chest.

According to internet sources, small breasts make you look younger (maybe that’s why everyone thinks I’m 25…) and they are more sensitive than larger breasts. Also, you don’t have to worry about them sagging over time the way larger breasts do.fried-eggs-1

So let’s hear it for our magnificent mammaries, whether they be small or large, perky or droopy, plump or flat. Love what you have, and if you don’t, there’s always surgery!

PS. None of the imagery here is representative of my actual breasts, just in case you were wondering.

NFED Regional Conference in White Plains, NY

Last Saturday I hopped in my (NEW!) car and zoomed down to White Plains. It was a lovely sunny morning, although it was close to 0° F. When I arrived in White Plains, I drove around the block about 5 times before figuring out where the hotel actually was. Way to skimp on signage, Cambria Suites. I reluctantly handed over my (NEW!) car to the valet and turned my attention to the day ahead.

I arrived bright and squirrely and bounded up to the hotel lobby, where I greeted the NFED staffers, Kelley and Lea, and got to work at the registration table. I was soon joined by a very sweet young lady named Cami who helped check people in as they arrived.

Five minutes later I saw my reflection in a mirror and noticed that the tag on my scarf was sticking up. Smooth.

I later saw my reflection in a mirror and noticed that the tag on my scarf was sticking up. Smooth.

Of course I was happy to meet a lot of folks I hadn’t met before, but there were two families coming that I was especially excited to meet.

One was a young couple who had recently found out that their unborn son is affected with EEC. Ultrasound technology for the win! The father, Dennis, had reached out to me via email just two weeks before, after having found my blog. (I’ll write more about that cool story in another post.) I encouraged them to take the trip down from Maine so they could experience the awesomeness of a family conference.

The other family that I was looking forward to seeing was a guy (Sean) with EEC who I had known about from his aunt (Sally), but I had yet to meet in person. A couple of years ago, Sally and I had gone out for coffee and ended up spending something like four hours sitting and talking about life with EEC. Her sister (Sean’s mother) had EEC, so Sally knew all about how it was for someone to grow up with EEC and all of the challenges she had faced. She had been trying to get Sean involved with the NFED, but he had been reluctant. Finally I was going to meet this guy and his girlfriend Sharon!

Back to the conference – the morning kicked off with a heartwarming intro by DeeDee Olsen. Then, Kelley and Lea introduced themselves and spoke about the staff and services the NFED offers. Then, Tessa Field from Edimer gave a talk about the research that Edimer has been doing for XLHED. I found this really interesting, as I have seen Tessa at the last several conferences and I was aware of the XLHED research and treatment progress, but I had never actually sat in on one of the lectures. Tessa is an excellent presenter. She’s able to explain genetics in a way that the average person can understand.

Suddenly it was time for lunch! I made a sandwich and plopped a scoop of what I thought was potato salad on my plate. Sean’s girlfriend Sharon was beside me as we ate and we talked a lot. At one point I put a forkful of the potato salad into my mouth and realized instantly that it was NOT potato salad, but chicken salad. Horrors! Sharon had just asked me a question and was looking directly at me as I desperately tried to decide what to do with the offending meat product in my mouth. I smiled and held up my finger to indicate that my mouth was full. As soon as she looked away I blurted the contents into my napkin. It did cross my mind to chew and swallow, but since I haven’t had meat in so long I was afraid it might cause digestive calamity and ain’t nobody got time for that.

Anyway, talking with Sean and Sharon was really cool. It’s always fun to meet another person with EEC and go through all the stuff that is “wrong” with you, and realize that it’s actually tied to EEC, and that other people with EEC have the same problems.

My newest friends, Sharon and Sean.

My newest friends, Sharon and Sean.

After lunch, Dr. Tim Wright gave an entertaining overview of dental treatment for kids with ectodermal dysplasias. The final presentation was by a doctor who explained genetic testing. It was a difficult talk to follow and unfortunately I think it may have left people even more confused about genetics than they were before. Afterwards, I tried to explain to the others at my table what autosomal dominance is, but I don’t know if I did any better.

That was it for the presentations, and we had some time before dinner to chat. I mostly talked to Sean and Sharon, but I also got to talk with some other people I hadn’t met previously, and catch up a bit with the “regulars”.  A lot of people left at that time, and by the time the pizza was set out for dinner, there were only two tables of people left.

I made sure to grab a slice of pizza that did not contain meat, and I made my way over to talk to Dennis, who I really hadn’t gotten a chance to talk to earlier in the day. By then he had made friends with lots of people, telling them the story of how he and Lindsay found out their son would have EEC. Everyone was really excited that they had found their way to the NFED so early, and I felt a tiny bit of pride that my blog may have been the beacon that helped them find their way.

By about 6pm, everyone was gone and I sat talking with Lea and Kelley for a bit, while a handsome waiter cleaned up around us. We reflected on the day and talked about how we were looking forward to the national conference in Colorado in July. We said goodbyes soon after that, and I headed down to retrieve my (NEW!) car from the valet.

As I waited for my car, I noticed that the valets were actually driving the cars in and out of elevators, and that the garage must have been a floor below us. As I watched, a car emerged from the elevator and scraped it’s side along the edge of the brick wall next to the elevator. My mouth fell open, and as the car drove closer I could see that the other side was equally scratched. I realized that it must have been one of the guys who worked there, but I was rather unnerved at his carelessness. My car finally emerged without any damage and I leapt in and got out of there before anything else could happen. Crazyness!

So in conclusion… if you happen to have a NFED Regional Conference in your area, I highly encourage you to attend (just avoid the valet parking option). It is a great opportunity to connect with more local people, and to find out how the NFED can help you (or perhaps, how you can help the NFED). I forgot to mention this earlier in the post, but they provide a childcare option so that your kids can play and meet other kids while you hang out with the adults.

It was great to connect with new people and to have the opportunity to see some of my longtime NFED peeps in the wintertime. Less than five months to go until the conference in Colorado! Woo!

Photo Credits: Lea and Kelley took the photos and I snagged them from the NFED Facebook Page.

Toastmasters Ice Breaker Speech

I mentioned a couple of whiles ago that I was going to join Toastmasters again. I’ve been going for about two months now and last Monday I did my first speech, which is known as The Ice Breaker. The objective of the speech is to introduce yourself to your audience and demonstrate what speaking skills you already have in 4-6 minutes. I actually already did the Ice Breaker speech at the previous Toastmasters club I was a part of, but I figured that I would just start at the very beginning with this new group. Of course I wrote a new speech too because the other one didn’t seem fitting anymore. Anyway, here is the text of my speech. I’ll have to record it next time!

Uniquely Fortunate

One of the first things people will say when a child is born healthy is “she’s perfect with all 10 fingers and toes.”  As you may have noticed, that descriptor was left off my birth announcement, as I was born with a rare condition called Ectrodactyly-Ectodermal Dysplasia Clefting Syndrome, or EEC for short. The most obvious symptoms of this condition at the time of my birth were my complete bilateral cleft lip and palate and my missing fingers and toes. Being born this way meant that I had some hurdles to clear in my early life and certain issues, both physical and emotional will stay with me for the rest of my life. But I didn’t let that get me down. Instead, I view my circumstances as uniquely fortunate.

I was fortunate to have been born near Philadelphia because that meant that I had access to skilled doctors and quality medical care to treat the various issues related to my syndrome. I was fortunate that my family was loving and accepting of me and that my parents never told me there was anything I couldn’t do. I was allowed to behave as any other child, and despite having a lot of surgery and medical treatments, I think my childhood was normal.

Let’s divert from EEC for a bit and talk about some of my interests. There are two things that I have always been passionate about and consider to be important aspects of what makes me ME. First I have always loved to create. Whether it is drawing, sculpting, writing or telling stories, I love the feeling of energy that flows through me when I am in the creative zone. I was fortunate to have a natural talent for art and never thought that my hands would hold me back from that. The second thing I have always held dear is a love and appreciation for nature. I was fortunate to have parents who valued this too, and as a child I got to spend time exploring in the woods, watching sunsets on the beaches of Cape Cod, observing the stars on summer nights and learning from everything I saw. Even now I can spend hours just wandering around outside, looking at plants or insects and being awed by what I see.

When it came time to decide what I wanted to do with my life, I had some difficulty settling on any one thing. For a short while I had the idea that I would write and illustrate children’s books for a living. This was mostly based on a fantasy I had of living in an old farmhouse with a massive art studio in the attic, and apparently a very wealthy husband to support my artistic endeavors. Unfortunately there was no such husband in the picture and I knew I needed to find a more reliable way to earn a living. It took me a few years of wandering before I figured out a career that would allow me to combine my passion for creating and my love for nature – Landscape Architecture.  Before you envision me walking around a property with a weedwacker, let me clarify. Landscape Architecture is the art of designing beautiful, functional and meaningful outdoor spaces. LA requires a vast knowledge of history, art, architecture, psychology, botany and design. It is not the same as landscaping, which is what the guys with lawnmowers do. I enrolled in the LA program at UCONN and threw myself into it wholeheartedly. I was really psyched to finally have found my niche and be able to combine so many of my interests in one profession. When I graduated with a BSLA in 2008, I was ready to hit the ground running. Unfortunately, this was at the same time as the 2008 stock market crash, and suddenly, not one LA firm was hiring. Fortunately, I had a lot of clerical skills and I was able to find work in the corporate world.  Fast forward several years and I am now working right down the road from here at an additives manufacturing company, which is just a fancy way of saying a chemical plant. I work in the marketing department and while it’s not landscape architecture, it does allow me to flex my creative muscles a bit and it often pushes me out of my comfort zone.

I’d always felt like EEC was only a small part of who I was, but after graduating and while being underemployed, I entered a period of self-reflection. I decided to look up an organization I’d known since childhood – The NFED. NFED stands for National Foundation for Ectodermal Dysplasias and it is an organization for people like myself who are affected by various forms of ectodermal dysplasias.  I joined the organization with the idea that I could be an inspiration to others, but what really happened is that I met a lot of kids who really inspired me. Comparing stories with the children and other affected adults led me to realize just how much EEC has affected me. As I’ve gotten older I have l learned to cherish how unique EEC makes me, and thanks to the support I felt from my NFED friends, I even started a blog about my life with EEC. Being open about my syndrome has made me feel better about who I am, and it makes it easier for me to talk about my issues without feeling uncomfortable. Blogging also offers me a challenging outlet for my creativity.

I hope that by being involved in Toastmasters I can refine my speaking skills and become more comfortable in front of an audience. I would like to use my talents and my experience to become a motivational speaker someday, or maybe an educator of some kind. I would like to share my fortune and pay it forward to help others as many have helped me.

Throwback Thursday

I’ve decided to liven things up by doing a weekly “Throwback Thursday” post. It will consist of photos, journal pages, and who knows what other mementos I will dig up. Hope you enjoy!


Goofball. Summer 1987

My mom and I were being silly as I got ready for bed. I probably asked her to play with my hair and this was the result. I loved making goofy faces to make my mom laugh.

This picture was taken shortly after my nose revision surgery. If you look closely you can see how red the scars are around the bottom of my nose, plus some of my stitches got infected so I had sores too. Ow.

I feel like this picture sums up how I felt post-surgery. After getting over the hump of feeling sad and wounded, there’s moments of feeling pretty happy and silly.




The What’s Underneath Project – Melanie Gaydos

I recently came across something cool: The What’s Underneath Project. The idea is to get people to talk about their sense of style and how they present themselves as they are slowly removing pieces of clothing (down to their undies). It’s not a sexy striptease, but a removal of layers and defenses. I think the idea is to show that “style” goes deeper than the clothes you wear. I obsessively watched nearly all these videos yesterday and found a lot of them to be really interesting because people had some really profound things to say. Other people, I just wanted to slap because, hello, you look freaking awesome, stop hating yourself. 

Of course the one I really want you to look at is Melanie Gaydos’ video. Melanie is a model and has a form of ectodermal dysplasia. I’ve talked to Melanie a couple of times online, and I was always impressed with her strong sense of self and her ability to push herself out into the public eye. When I was younger I had fantasies of being famous, but seeing as I can’t even go to the grocery store in flip-flops, for fear of people gawking at my feet, I don’t expect I’d handle fame too well. 🙂

Melanie has some incredibly profound things to say in her video. Check it out and be amazed.

I really hope to meet this chick in person someday soon! Rock on, Melanie!

To see her modeling work (warning: lots of nudity), visit melaniegaydos.tumblr.com/  


Speak the Truth, Even if Your Voice Shakes

The following TED talk resonates with me in so many ways; some of which I will explain below. In the video, Ash Beckham talks about the difficulty of coming out of the closet.  When you hear ‘coming out’,  you may think it only applies to gay people, but there are many kinds of closets and many kinds of ‘coming out’ moments. As she says, all a closet is is a hard conversation.

When you keep the truth about yourself a secret, you are essentially holding a grenade.

Writing my story here is a way to help me continue coming out of a closet of my own, and maybe inspire you to come out of yours. While in some ways my EEC is obvious – anyone with eyes in their head can see that I have scars and physical imperfections – in many ways I have spent my life trying to conceal this uniqueness from others. This was especially true throughout my school days, when I would rather have died than try to explain my condition to my classmates. I was ashamed of being different and wanted nothing more than to look ‘normal’ so that people would get to know ME instead of judging me on my appearance. Even as an adult, I sometimes found it difficult to go to new places because I was certain that people were staring at me and judging me the whole time.

It wasn’t until I was in my mid-20’s that I began to expand my circle of friends, and in turn, the scope of my social awareness. One summer evening I was at a cookout hosted by some lesbian friends. I looked around at the group and began thinking about how they had all made decisions to ‘come out’ with their identities. They weren’t ashamed of being different, and they didn’t seem concerned with how people would perceive them. Instead, they knew who they were and how they wanted to live and they went for it. They didn’t hide or pretend to be straight. Some of them weren’t even concerned with whether or not they looked female or male. In that moment I made the correlation to my own identity and how I had chosen to express myself. I knew that I wanted to be more “out” about myself and stop worrying so much about what other people would think. I wanted to be confident in myself the way these women were.

Of course, there is some distance between thinking about doing something and actually doing it. Plus, it’s not like coming out about a health issue is as edgy and cool as saying you’re a lesbian. What I really had in mind was to be able to look someone in the eye and answer their questions without blushing or stuttering and feeling like an undesirable. I wanted to change my attitude from “I know I’m weird. Sorry if it’s freaking you out. I’ll leave now” to “Yes, this is who I am. If you don’t like it, it’s your problem, not mine. I have just as much right to be here as you do.”

In the summer of 2011, several years after I’d had my lesbian-inspired epiphany, I found myself at the NFED Family Conference in St. Louis. I wrote about that experience here. Attending the Conference encouraged me to come out of my shell even further. It was a reminder that there are other people out in the world who are just like me. Other people who have successful careers and families and happy lives. They weren’t hiding their ectodermal dysplasia, but instead were living with it and dealing with it, not letting it hold them back.

Throughout this time, there were a series of experiences and people who inspired me to continue to open up and accept myself, flaws and all. It’s not easy to always be open and confident, but like anything else, the more you keep trying to do it, the easier it gets. I still feel like I have a way to go, and I expect that it might be a lifelong challenge for me. Fortunately I have many inspirational and supportive people in my life, and talking about it definitely helps. Talking to people always puts your own challenges in perspective.

As Ash states in her talk;

Hard is not relative. Hard is hard. We all have hard.

Steps to come out of your closet, or to have a hard conversation:

#1 Be Authentic

#2 Be Direct

#3 Be Unapologetic – Never apologize for speaking the truth

The only story that matters is the one you want to write.