Touchy Feet

My next toastmaster speech project is supposed to be a “touching speech,” It’s practicing  how to convey emotion through storytelling. Instead of just saying “Billy felt sad because he wasn’t invited to Joey’s birthday party”, you’d tell the story of Billy watching his friends pass by on their way to Joey’s party and wondering why he wasn’t invited.

I’ve been trying to decide what to do for my touching speech. I thought about telling my Color Me story, about the time the girl at school rudely suggested I use markers to give my hair some color. But then I had a crazy idea. Something that would really push me beyond my comfort zone in a big way.

I could tell the story of that day at the water park when that boy made a scene over my alien feet. I could talk about how ever since then, I have gone to great lengths to hide my feet – not only from strangers, but even from most acquaintances.

The kicker (see what I did there?) of it all would be that I would either walk up to the lectern in my bare feet, or I would wear shoes I could easily slip off to reveal my feet as I told the story.

But I’m not sure…. is it cheating to use my body as a prop? Is it overly dramatic? Would I be able to do it without peeing my pants in front of everyone? I practically hyperventilate at the thought of it, yet that only makes me want to do it more.

I don’t know. I’ll have to think about it.

What would you do?

Negative Imprint

Today’s post is probably going to be a mishmash of whatever pops into my mind as I sit here. I’m at a park, watching the bright green grass appear from beneath the melting snow. We got several inches overnight but already the sun has chased away most of it. 

I’ve been thinking about taking you, blog readers, along with me on a journey of self discovery. I recently came across this YouTube video by Teal Swan that got my mental wheels turning. It was about figuring out what your negative imprint is, and in turn, figuring out what your life purpose is. Check out the video description (in the link) for a more thorough explanation. 

It really struck a chord with me because lately I’ve been feeling very lonely. Over the years I have lost my very closest friends for one reason or another and it has left me feeling somewhat rejected and alone. I’ve lost the motivation to even try to make new friends, or at least to really connect with them in a meaningful way. 

I realize it’s on me to try to make the effort to connect with more people, but after being burned so badly and on more than one occasion, I’ve resigned myself to really focusing only on my relationship with Dave. Of course I try to give time to my family as well, but even that isn’t going all that well, as we all live in different states and no one really likes to talk on the phone.

I’m not sure what my negative imprint is, whether it is loneliness, or rejection, or worthlessness. Or it could be something else that I haven’t thought of yet. In the video, she says whatever it is will be very painful to contemplate, so I haven’t set aside time to really delve into it yet. I have a feeling it’s something along those lines though, and that my vibrational opposite; the thing that I most want out of life, is a sense of deep, meaningful connection, or perhaps helping others to find connection or self worth.

It’s funny because I have built up so many walls over the years that I’m sure I don’t come across as a very open or connectable person when I am out in public. I generally avoid having conversations or interactions with people I don’t know. In fact, the other night, we were at a performance at the high school and during intermission we were standing at our seats and chatting for a few minutes. I noticed a young girl in the row behind us was checking out my hands. I tried not to let it get to me but then I saw her whispering to her grandmother, folding back two of her fingers and pointing at me. So I moved my hands to the other side of the chair so she wouldn’t see them. Afterwards I thought, why didn’t I just let her look? Or meet her eye and smile? Instead it’s like an instinct for me to just hide and ignore. Ugh. I don’t even want to be that way but it always catches me off guard and I act like a jerk. 

Anyway. That’s it for now- time to head back to the office!

Show Me Your Hands

Yesterday I found out that one of my followers on Instagram is a devotee


I knew this might happen when I went public with the blog and put a couple of videos on YouTube. 

My first reaction to finding out that someone is looking at pictures of me solely because they think my deformed hands or feet are sexy was one of feeling physically ill. I felt like my privacy had been violated somehow. 

After taking some time to mull it over, I began to wonder if it was really any worse than finding out someone was attracted to me because I had blonde hair or because they liked some other feature, such as my fine ass. (I kid.) Either way, it’s objectifying me down to whatever part it is they are turned on by.

Then I thought about celebrities and how all kinds of people are admiring them from afar and likely including them in sexual fantasies all hours of the day and night. So maybe if I have one or two guys scouring my blog or Instagram feeds trying to find pictures of my hands and feet (of which there really aren’t many), what harm is there really in it?

This person suggested that I could make money if I posted videos of myself doing stuff with my hands or feet. Not even sexual things, but just regular things. Somehow that is a huge turn on. 

I’m kind of glad I found this out now, as I was considering making a video of myself playing the piano and sharing it here and on YouTube. Scratch that! 

Maybe I am being too sensitive about it. If someone wants to diddle themselves while watching a completely nonsexual video that I posted online, why should I worry about it?  It’s completely within my control whether I feed into it or not, and I choose not to. 

To my friends with ectrodactyly, if someone asks you to send pics of your hands, I have a few choice photo responses you can use. 


Jazz hands!


No pics for you, wanker.


Straight up nope.


I’m curious to hear from others. Have you been contacted by a devotee? How did you react? Do you think it’s a harmless side effect of making your presence known online? Or are we boarding the train to creepy town when we interact with these people?

Are you a devotee? Why are you attracted to disability or deformity? I can understand being interested from a curiosity standpoint, but why is it sexual? 

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!

Thoughts on Hand Transplants 

I’m currently sitting at the Mazda dealership while my car gets it’s 5,000 mile service. It’s crazy that I’ve already driven that many miles, but it adds up quickly when you’re zoom-zooming around New England. 


My new ride…. zoom zoom!

The dealer just walked in after parking that red Miata and said “You could be driving that! You’d fit right in it!” Hah. Maybe next time, buddy.  

This afternoon I am heading up to Springfield, MA to pick up Kris, and then we are zoom-zooming all the way up to Grand Isle, VT.  


One thing I wanted to talk about today was the story of Zion Harvey’s bilateral hand transplant. If you follow my Facebook page, you may have seen the link I posted there the other day. 

Here is a longer version, which Dave and I watched last night: Zion’s Hand Transplant.  I highly recommend watching this one, even if you’ve already seen the shorter one. Grab some tissues. 


Zion with his new hands.

Oh my goodness. This story touched me on many levels. First of all, any time I see a kid having surgery, there is a part of me that is right there on the table with them. Second, the hospital involved is Children’s Hospital of Philadelphia, aka, CHOP, where I spent a bit (ok, a lot) of time when I was a kid. I was probably operated on in that same room. So it hits close to home for those reasons. 

All of that aside, the maturity level of this kid is insane. It’s hard to imagine having been through all that he has faced in his life already. His attitude and outlook is incredible. It’s so cool that he’s able to have this procedure, although as you’ll see, it is not without risks and a lifetime of maintenance. 

Also, can we just take a moment to consider the complexity of this surgery? As the doctor says in the video, the vessels and tendons and everything are smaller in children, so that adds a challenge, but look at how many tubes and cords (for lack of a better term) there are to attach! Plus getting the bones to line up and everything! Omg. And I can’t even imagine how painful the healing process must be. Seriously. 

Of course I also think about the child that the hands came from. What happened? How did his/her parents decide to donate? Will they see this story and know that these hands belonged to their child? And what will it be like for Zion to grow up looking at hands that once belonged to someone else? 

I was initially made aware of this story when a friend with EEC posted this on her page and mentioned that she would be interested in having a hand transplant. 

At first I was surprised that she would want such a thing, but then she reminded me that she does not have any thumbs. Still, it seems like an incredibly intense procedure to go through if you can manage without. I mean, you have to take anti-rejection drugs for the rest of your life, which can cause a whole bunch of other problems. 

I consider myself one of the lucky ones as far as ectrodactyly goes. I might not have 5 fingers on each hand, but the fingers I do have work well and I haven’t needed any surgery on my hands at all. I’ll likely never be a hand model, or a thumb wrestling champion, but I am definitely not at hand transplant level either. I can only imagine how tough a decision it would be to make, though obviously if you do not have hands or the hands you have don’t function properly, then perhaps it makes the decision easier. 

That’s my opinion for now. I’d be interested to hear from others. Would you have a hand transplant if you could?

Lobster Girl

No one’s ever called me a lobster girl, at least not to my face.

Dave and I recently started watching Carnivale, the short-lived HBO series about a traveling carnival in the 1930’s. I’m hooked already!

In one episode, the main character, Ben, is sent out to find a lobster girl to bring back to the show. He finds her in a dilapidated shack. She doesn’t speak. It’s her only scene in the episode, and it’s not flattering whatsoever.

I looked up the actress after the episode and found that it was Cathy Berry, who is Grady Stiles‘ daughter. The Stiles family were freak show performers who called themselves The Lobster Family. Their story is pretty depressing. Look it up later, if you don’t know it already. Or don’t. Maybe it’s better you don’t know.

Bree Walker, another well-known person affected by ectrodactyly, also appears on this show in later episodes. I haven’t yet seen her performance as the Scorpion Queen, but from what I’ve read it is a more positive performance than that of Lobster Girl.

Speaking of Bree Walker, I read an article about her in Guideposts Magazine when I was a kid. Aside from our family friend Suzanne, I hadn’t met or heard about anyone else with ectrodactyly. My mother encouraged me to write a letter to Bree to tell her she was an inspiration. I was excited. I wrote to her and told her a bit about my 9-year-old self. I’d never written to a famous person before but somehow I expected to hear something back. Alas, it never happened, and I’ve always felt a bit bitter about it. Though all these years later, I guess I’m doing just fine without her. Alcoholism and plastic surgery have not been kind to her.

Bree Walker then and now.

Moving along. I had several points I wanted to make about ectrodactyly and freak shows and disability.

First of all, I’ll say that I am glad that traveling carnivals and freak shows are not a thing anymore. While you can find them if you look hard enough, the people participating in them have chosen to be there. At least I hope so.

One of my Facebook friends is a performance artist who calls himself the Black Scorpion. I think it’s cool that he has embraced his uniqueness and emphasized it in such a fashion. Pretty much everyone else I know who has ectrodactyly has a job or career that doesn’t highlight their digits (or lack thereof).

My ectrodactyly isn’t something I spend a whole lot of time thinking about. When I go out in public, I do not hide my hands. Appearance-wise, I am usually more concerned about how my hair looks or what kind of wardrobe malfunction I’m about to have. As long as I’ve got shoes on, I’m not thinking about my feet at all. See my previous post for more info on my foot-shyness.

Some people (like the Stiles family mentioned above) have more debilitating ectrodactyly that affects their ability to walk. In this case I can see ectrodactyly being called a disability. But for someone like myself who is able to walk and have full movement and strength of arms and legs, it’s not a disability at all. In fact, I have a hard time picturing what I would do with a full set of fingers. I don’t know if my brain could handle keeping track of all those extra digits. I’d be typo-ing all over the place, and poking myself in the eye when I tried to scratch my nose.

One other ectrodactyly-affected person I wanted to bring up is Meg Zucker. I learned about Meg and her blog, Don’t Hide It, Flaunt It, several years ago. Meg’s mission is to get people to be proud of their differences and not be ashamed of the things they can’t control. She is a great role model for anyone with a difference who feels that they need a little encouragement to get out and flaunt.

As for me, I can’t say that I consider myself a flaunter, aside from my activity on this blog. I do get out and meet lots of people through my job and through my volunteer work. I’m not ashamed of my hands, or the scars on my face, but I don’t exactly run up to people and show them off either. I just live my life. Some days things happen that remind me that I’m not average. Some days that can bring me down a bit. But not for long.

I can do a lot of things with these hands. Too many things to list. The only thing I can’t do is give people the finger. It’s probably a blessing in disguise because I’m sure I would have caused a road-rage incident by now if I’d been able to flip off all the people I’ve wanted to.

Maybe I should focus on making heart shapes instead.


I love my hands!

Of course there are a lot more people affected by ectrodactyly than I’ve mentioned in this post. It’s possible that you’ve met one or two and did not even notice. We’re everywhere! We are writers, teachers, artists, architects, builders, movers and shakers.

Ectrodactyly might seem frightening when you first learn about it – especially if it is your child who is affected. But the more you see others with this condition who are functioning normally, the more you realize that it is just a minor detail.

Fingers, shmingers! Who needs ’em?

Sunday Funday Post: Zentangle

Two things I have been getting right lately are that I’ve been meditating each morning and I’ve started Zentangling.

Day 4

Day 4 tile

Whatsy-tangling, you ask?

Zentangling. I first heard about it sometime last year, when my friend Kristina posted some of her drawings online and mentioned that she had been doing it to relieve stress. I was immediately jealous that she was posting cool artistic pictures and I wasn’t, because hello, *I* am an artist!

I continued to doodle all over my meeting notes at work, and on scraps of paper during phone calls, but I rarely broke out my sketchbook at home. I wanted to know more about this Zentangle business, but it was just one thing too much. So for Christmas, I asked Kris (my brother) to get me a book about Zentangle.

et voila:

One  Zentangle a Day

As you can see by the book cover, this is a six-week course in the art of Zentangling. I am so into it right now, that I’ve actually done it more than once a day on a couple of days because I just couldn’t wait to do another one.

Day 2 - morning

Day 2 – Morning

Day 2 - Evening

Day 2 – Evening









It’s been like rediscovering a part of myself that I lost. Drawing has always been such a part of me, but sometimes I neglect it. I get caught up in the hustle and bustle of life, and I don’t give myself the time to sit down and do what I really love. When I was in high school, my art teacher made us do weekly sketches. We’d turn them in on Friday and then over the weekend he would hang them up on a bulletin board for everyone to see on Monday. He would rank them, so there’d be first, second and third place, and then a bunch of honorable mentions. If I remember correctly, the really bad ones didn’t even make it on the board. This brought out my competitive streak in a major way, and my goal was always to get first place. It usually meant that I would stay up ridiculously late on Thursday nights to complete my submission, but it also meant that by the end of senior year, I had a ton of great drawings in my portfolio.

So anyway, I think getting myself to stick to this six-weeks of Zentangle, will be a great help in getting myself back on the wagon. It’s amazing how it’s already ignited the fire in my belly. What I like about Zentangle is that you only need 30 minutes a day to do it. It is a form of meditation, because as you’re drawing, you’re only thinking about the pen and the paper, and everything else is irrelevant in that moment. At least, that’s how it is for me, and that is why I have always loved to draw.

Day 3

Day 3

I’m sure it’s not something that everyone would be interested in, but if you’re like me – an artistic soul trapped in the routines and demands of a non-artistic work life, I highly recommend that you check this out. If you’re one of those people who thinks they can’t draw, don’t let that stop you from trying this. I mean, look at the drawings I posted – they are all just variations of lines. Just let your hand do the walking.

Exploring Ectrodactyly with EEC Chick

Fun times in our pool!

Check out my crazy toe!

As the name implies, ectrodactyly is a prominent feature of EEC. Ectrodactyly just means missing fingers (or toes). If you ask me about it, I’ll say that I don’t think about ectrodactyly much and that it really hasn’t been that big of a deal in my life. Which in some ways is true. It has not caused me much physical discomfort, and in general I have not let it affect my self-confidence or social life. I had no difficulty learning to walk, tie my shoes, write, draw, play the piano, sculpt clay, or even type. Ectrodactyly never holds me back! Except that at times, my perception of it does hold me back. I have never had a professional mani/pedi because I don’t want a stranger touching (or even looking at) my feet. I’ve never found a pair of high heels I can walk in without agony. In fact, most ‘cute’ shoes are uncomfortable for me. I’m still timid when it comes to baring my feet in public, though I’m working on that one.

I just walked down these stairs with two different sized feet... no big deal.

I just walked down these stairs with two different sized feet… no big deal.

I was lucky because my ectrodactyly did not limit the function of my hands or feet. I only needed to have surgery on one foot, and that was because the “big toe” stuck out so far that wearing a shoe was a challenge. The surgeries were done when I was really young, before I started school. I have tons of pictures of little me walking around the house with a huge boot on my foot. It’s amazing I was able to walk without tripping, when I can barely do that now without a cast on my foot. . . .

The first toe surgery didn’t work, so we went to another doctor and I had a second surgery. The doctor was really nice and the day of my surgery he actually came into the pre-op waiting room and picked me up and carried me into the operating room. It was much more comforting than being wheeled in on a gurney. That may also have been the time that they offered me different fruity scents for anesthesia. Regrettably, I chose banana.

The procedure was simply to cut a wedge of bone out of the toe and fold the toe inward a bit. They stuck a surgical steel pin through the tip of the toe to hold it in place while it healed. I still have the pins from both surgeries – I’ll post pictures of them in a later post devoted to the various medical paraphernalia I have collected through the years.

I seem to have misplaced my bubble wand.

I seem to have misplaced my bubble wand.

I’m sure I was aware that my hands and feet were different from a young age. I would look at my mom’s long, graceful fingers and wonder if mine would ever look that way. I knew I was different, but everybody was different in some way or another. My hands and feet weren’t a big deal, especially since my cleft lip and palate issues required much more attention.

The first time I remember becoming acutely aware of my hand difference was when I started school. There were probably instances before that where someone might have noticed my hands or feet and asked about them, but nothing sticks out in my memory. What I vividly recall is walking down the hallway at school and seeing kids pointing and staring. It was the first time I saw anyone look at me with fear in their eyes. It hurt to be called names and to be feared by other kids when all I wanted to do was make friends and learn.

Of course, not everyone treated me differently. Some kids were able to look past my outward appearances and were friendly to me right away. Before long, kids got used to me and stopped noticing my hands at all. My feet were always covered by socks and shoes, and so it was easy to forget about them.

Hey kids! Are ya freaked out yet?

Hey kids! Are ya freaked out yet?

One of my favorite places to go as a kid was Sesame Place. I loved the water slides most of all. One year, my cousin Karen took me and my friend Joanna there for my 9th birthday. It was a Saturday, and the park was more crowded than usual. The lines for the water slides were long, and looped back and forth on each other. Karen waited while Joanna and I went on the slides. As we inched our way up the stairs in line, there was a group of boys right in front of us. They were being typical boys, talking roughly and pushing each other around. After a few minutes one of them noticed my feet. “Eww!” He shrieked, “Alien feet!” My heart lurched. The other boys looked and made exclamations of disgust and laughed. They lost interest after that, but this kid wouldn’t give it up.

The line moved agonizingly slow, giving him plenty of time to torment me. In hindsight, I don’t know why none of the other people in line told him to shut up, or why I didn’t use one of my alien feet to kick him in the groin. All I remember is the feeling of shame, that I was gross and scary and shouldn’t be showing my feet in public. When we finally got to the top, I had to get on the slide right behind him. I was so flustered that I didn’t wait for the attendant to tell me to go ahead. I just went, and the cruel forces of gravity pulled me right up behind him. “Eww!” he shrieked again, as my feet brushed up against his back. “Don’t touch me with those monster feet!”  he yelled. Miserably, I grabbed at the slippery sides of the slide, trying to slow myself down somehow. I bent my legs to try to keep my feet from touching him, but our fate was sealed and we slid down together, hating every second of it.


Weeee! (This picture is from a happier day.)

Once I escaped from that nightmare and met up with Karen again, she asked me who the kid was that I’d been talking to. Did I know him from school? I feigned ignorance. I didn’t feel like going on any more slides after that. I dried off and put my shoes back on. We had lunch in the park and then we went home.

I didn’t talk about that moment with anyone after that, but from then on I was hyper vigilant about who I saw my feet. When we went to the beach, I would wiggle my toes down into the sand to shield them from the eyes of strangers. I was embarrassed about the footprints I left in the wet sand as I walked down to the water. I dreaded occasions where I’d have to expose my feet at school. I eventually learned that no one was going to make a scene like the kid at Sesame Place did, but I still felt ashamed and did not want to give people any more reason to think I was creepy.

As I grew up, as a teenager and a young 20-something, I only let a select few see me barefoot. I had such anxiety about my feet that I always kept them covered in public. When I was 28, I decided that I wanted to take swimming lessons again. I’d always loved to swim and thought it would be a great way to get exercise. So I took a class at the YMCA. I wore Crocs in the locker room and on the pool deck, slipping them off for only the time it took to get from the bench to the pool. No one ever commented on my feet, and most likely not that many people even noticed. It helped me build a little confidence, but I wasn’t about to parade around town in a pair of sandals.

It wasn’t until I went to the NFED Conference in 2011 that I really showed my feet to anyone else. I was inspired by the kids I saw running around barefoot or in sandals. Kids whose feet were just like my own. I remembered how good it felt to wear sandals and to feel the breeze on my feet. I went home and bought a pair of flip-flops. I was still shy about showing my feet, so I only wore them around the house and around people I was comfortable with. But it was a start. The next year I brought the flip-flops to the conference and I wore them the whole time. Of course, as soon as the conference was over and I had to return to the “real world”, I covered up my feet again.

Throwing EEC gang signs with my homeboys.

Throwing EEC gang signs with my homeboys.

Each summer I grow a little braver. Last year my company had it’s summer picnic at an amusement/water park (not Sesame Place). I decided to go in the water park. It was the first time in 20 years that I showed my feet (and my thighs) in a really public place. Most people didn’t even notice. In fact, most people were far from perfection in their bathing suits.

It might seem silly that I could be so affected by that kid at Sesame Place. Of course, he wasn’t the only kid who ever commented on my digits (or lack thereof). Maybe he was the straw that broke the camel’s back. Despite all the physical pain I’ve been through with my oral/maxillofacial/dental surgeries and my ear surgeries, it seems like the hardest thing for me in this life is accepting that I look different, and that people notice. It is something I have battled as long as I can remember – this feeling of not looking the way I’d really like to. I have come a long way in terms of accepting my looks, but I still have a long way to go.

I am always grateful that my hands and feet work so well. Not everyone with ectrodactyly is so lucky. I have enjoyed compliments on my drawing and penmanship skills. I can walk for miles and hike mountains without my feet giving out. I am fortunate, I know. Feelings of shame about one’s appearance are incredibly powerful and difficult to break away from. I know I am not alone in struggling with this. I have had friends who struggle with body image for other reasons, and so I know it is a common struggle, especially for women.

So there it is. My experience with ectrodactyly. I forgot to write about being called Ninja Turtle hands or Three Fingered Monster, but the moral is the same. Pick on someone about their looks and they get a complex about it. Don’t do it. Don’t make fun of fat people, or people with crooked faces or disfigurements. They didn’t ask to look that way. Look past whatever outward flaws a person has. You might just find that they are worth getting to know.

Where it all began – The story of my birth.

It was a dark and stormy night…

No, just kidding.  It was a sweltering midsummer afternoon when my mother’s contractions began.  My father’s cousins had come over to swim in the pool that day and through the window my mother could hear them laughing and splashing as she lay on the bed.  She would have been out there with them, cooling off from the heat, but she hadn’t felt so good and needed to lie down.  When my father came home from work a couple of hours later, he would take her to the hospital where I would make my debut.

My birth was a greatly anticipated event.  Not only was I the first child for my parents, but I was the first grandchild and first great-grandchild for all parties involved.  Everyone was waiting with bated breath.  Because my mother was young and healthy and there were no known health issues in our family, she had not had any ultrasounds or prenatal testing that would have indicated anything was amiss.  They didn’t even know if I’d be a boy or a girl.

Labor and delivery went as expected and I came into the world at 11:44 pm that summer night.  It was immediately obvious that all was not “right” with baby me.  They allowed my mother to hold me for a few minutes before taking me away.  While a cleft lip and palate was not an unheard of birth defect, my “clawed” hands and feet, sparse hair and eyelashes were cause for concern.  The doctors wanted to examine me further to determine if I had missing or deformed internal organs or mental deficiency.

My mother was taken up to her room without me.  My father went home to share the news with Gram and his cousins who were waiting to hear.  My mother called her mother to let her know that I had arrived but that there were some unexpected complications.  No one would tell her anything, so she didn’t know what else could be wrong with me besides the obvious.

It would be a long, lonely night.  At some point not long after she had settled into her room, they brought in another woman who had just given birth.  She had her baby with her, and all night my mother could hear the mother and baby on the other side of the curtain, cooing and bonding with each other.  Meanwhile, she had no idea where I was or what was going on. It wasn’t until early the next morning that I was brought in and she could finally hold me again.

Later that morning a plastic surgeon came in to talk to them about cleft lip and palate. The doctor was old and what he said was blunt.  “Your daughter will never look normal.  The sooner you accept that, the better.”   Despite this harsh diagnosis, he was the one who referred my parents to the cleft team at St. Christopher’s, and the skilled hands of Dr. Hulnick.  It was also sometime that morning that someone came in with pamphlets from the local AboutFace organization, which was a support group for people with various facial deformities.

Within the first week of my life, my parents took me to see the cleft team at St. Christopher’s, which was associated with Temple University.  This would be the first of many times I’d endure a full day of examinations.  The team made my first palatal obturator – which was an acrylic plate that fit across the roof of my mouth and allowed me to drink without aspirating.   (More on all this in a future post!)

Of course I don’t remember any of this.  I had to call my mom and asked her for the details.  Growing up, I’d always known basic facts about my birth, like how I’d been born at 11:44 pm, and that I surprised everybody with my birth defects, but I never really asked my mom how she felt.  How anyone felt.  I mean, was there some level of disappointment that a perfect child was not produced?

She said she remembers feeling fearful and overwhelmed.  She wondered how she would be able to provide everything I needed.  There was a lot of uncertainty about what my diagnosis meant, but there was such joy at my arrival that it outweighed any negativity.  Nana, (my maternal grandmother) was really supportive.  She was a nurse, so she was battle-hardened when it came to medical stuff.  She came up from Maryland and stayed with us for a week after I was born.  My other grandmother, (Gram), lived with us (technically, we lived with HER, but I didn’t realize that until I was much older), so  she was there every day and helped to hold me down while my mom applied my obturator and cleaned the junk out of my nose.

I asked my mom if she ever felt uncomfortable taking me out in public before my lip repair.  She said that she wanted people to see me and that there was nothing to hide.  She told Gram, “let people look if they want to look!”  They took me to the mall, to the grocery store, the bank – everywhere.  People would sometimes ask if I had been in an accident or if I’d gotten hurt.  She thinks it was good for her to talk about it.  Only once does she remember losing her cool.  While waiting in line for a teller at the bank, she noticed a man who would not stop staring at me.  He never said anything, he just stared.  Finally she snapped at him “Would you like to take a picture?”

It was interesting talking to my mom about this.  She began to recall things she had forgotten.  As we talked, I realized that she might not be remembering everything with exact accuracy.  For example, she recalls being told about the NFED soon after I was born.  However, the NFED wasn’t started until 1981.  She probably found out about it through a doctor or counselor at a hospital when I was still quite young.

I have some of the records from my birth.  No pictures, but here is my Discharge report.  I think the use of the term “clawed hands” makes it sound like I was a gryphon or something.  Which is actually kind of cool.