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?

2017 NFED Family Conference Recap

The 2017 NFED Family Conference has already come and gone – in a flash, it seems. This year it was held in Falls Church, VA, which is right outside of our nation’s capital – Washington DC. The day before conference was Advocacy Day, and many NFED families went to Capitol Hill to speak with their state representatives about mandating that dental treatment be covered under health insurance.

I won’t recap every second of the conference – just point out some of the highlights.

Highlight 1: Reuniting with old friends!

Now that I’ve been going to conferences for 6 years straight (except for last year, which I skipped), it’s crazy cool how many people I actually know! Of course there’s my adult EEC crew, Norma’s Canadian entourage, my mini-me – Ally, and her family, and all the other adult parents of EEC kids (most of whom are not much older than me).

There’s also a lot of youngsters who I met when they were just little tykes, and who are now getting so big! Julie, who once cried when I tried to hold her, now sought me out to say hello! I reunited with my two Sams, although I only have a picture of one of them. The boys I met at my first conference are all teens now and towering over me.

Of course the are plenty of other adults I enjoy reuniting with – I don’t want to try and list everyone here for fear of missing anyone. But you know who you are!

Highlight 2: Meeting new friends!

I was excited to discover a mother/daughter team from Connecticut at the conference. Not only that, but the daughter has EEC! Doubly exciting, since we hardly ever get New Englanders, much less Nutmeggers at the conferences. I will definitely be getting in touch with them so we can get together locally.

Another new EEC person was 9-month old EJ, who was there with his mom Iris. Iris introduced herself to us by announcing that she had Facebook stalked all of us. If she hadn’t been a mom of a young affected boy, this might have been super creepy, but we all laughed and then fought over who would get to hold EJ next.

I’ll let the photos do the rest of the talking – and let me say a quick shout-out to Iris, Caitlin, Terri and Suzanne for sending me most of these pics. I think only about 4 of them were mine to begin with. And thank you Bridget for the picture of Sam and I. 🙂

After the conference was the Rally for Ally. I had hoped to get to chat with a lot of people there who I hadn’t gotten the chance to talk to at the conference. However, about halfway through, it started torrentially downpouring, and I ended up heading back to the hotel with the MacDonald clan. We got dinner in the hotel restaurant and then it was time for me to catch my plane!

Next year the conference is going to be in Oregon! I’m already trying to figure out how much time I can get off from work so that I can make an extended trip out of it.

Throwback Thursday: If I had 3 Wishes

In first and second grade, my teacher encouraged us to make books so we could practice our writing skills. At the time I was very impressed with myself because I wrote a lot of books. In looking through these “books”, 30 years later, I am amused by the fact that very few of them are actually finished. I would start off very excitedly and a few pages in, I would literally drop my pencil and move on to something else. The foreshadowing was unrecognized at the time, but looking back, it is quite telling.

Currently I’m working on scanning all my childhood paraphernalia, as it is starting to disintegrate into dust (construction paper is not meant to last). God knows I’ll probably get 1/3 of the way through and lose interest – in that regard, little has changed since second grade.

I do intend to share some of my early childhood creations, starting with this gem:

If I Had 3 Wishes


Obviously I wanted long hair and a full set of teeth…


Mrs. Bush was the best!


My cat, named Bunny, disappeared one day and we never saw her again. Sad. Also, it would have been nice if I could look more normal so other kids wouldn’t make fun of me.


My neighborhood was full of old people and it sucked.


Who is this, RIngo Starr?


Look at the sad pioneer woman!


And her sad woodcutter husband!


He’s about to get his 3 wishes! But aww, that’s the last page of my book.

If there’s one thing I wish Mrs. Bush would have taught us, it would have been storyboarding. Maybe I was just out that day. But to this day I struggle to plan things out – preferring instead to jump in and get started, only to find out that I’ve run out of paper (or time, or budget) before I could finish my story.

Perhaps one day I will learn!

Late Spring Inspired Memories

Hi there!

I’m sitting outside on this lovely evening and I’ve been itching to blog for days now. There is a lot on my mind and I want to write about these things, but they are too hard right now. So instead, I will write about something that makes me happy.


Awkward garden selfie. Disregard the towering bags of mulch behind me!


This time of year always awakens excitement in me. Perhaps this is a remnant of my schoolgirl days, when the arrival of warm weather, insects chirping outside the open windows, and being able to wear shorts again were signals that school was almost over for the year.

It’s no secret that I was not a big fan of school. Just like it’s no secret that I am not a big fan of work. Hah! Of course I always enjoyed learning and doing interesting things, but school, like work, wasn’t always fun and games.

From Memorial Day onward, school got fun. It was like we could all see the light at the end of the tunnel. Countdowns of remaining school days were chalked out on the board. Teachers would conduct classes with the lights off, to keep the room cooler (did it though?) Rules could be bent a little. The excitement was palpable.

Summer was hands down my favorite time of year as a kid. Waking up in the full light of day to the scent of freshly cut grass and moseying on down to the kitchen for a bowl of cereal was soon followed by asking Mom if I could go in the pool. Usually pool activities were reserved for after lunch, when it was hotter and after Mom had been able to get some things done around the house, but it never hurt to ask. I loved that pool so much. While on land I often felt clunky and awkward, once I was in the water I felt as graceful as a dolphin. Mind you, I may have looked awkward to anyone watching, but I was having fun.


Freedom, oh free-dom!

Sometimes we would take trips down to the shore. My great-grandparents had a trailer down in Somers Point, and we would stay there for a couple of days at a time through the summer. Days would be spent alternately choking down seawater as I attempted to play in the waves and getting burnt to a crisp on the beach, while evenings were spent chowing down steak sandwiches or pizza and then going on rides along the boardwalk in Ocean City. As a kid, I thought Ocean City was the most magical place ever.

As you can see, a couple of day of warm weather and I’m easily transported back to the enthusiasm I had for summer as a young kid. I only wish I could have the amount of time off that I did back then! Maybe it’s time to reconsider my career path…

Speaking of which, tomorrow I’m off to Chicago, but I will be leaving exactly 24 hours later. Talk about a whirlwind trip!


Hello from Houston!

Here I am in another hotel, in another city, on another work trip.

That reminds me of an Ani Difranco song…

in a coffee shop in a city
which is every coffee shop
in every city
on a day which is every day

The night before I left, I must have been subconsciously worrying that I wouldn’t wake up in time for my flight the next morning. I went to bed around 10:30, and fell asleep really quickly and soundly. I woke up and saw that there was light coming in from the hall, and I thought that it must be morning already. But Dave wasn’t in bed with me. So I checked the clock and it was 11:30pm! I kind of laughed at myself and rolled over to go back to sleep. Then I woke up again at 12:30. Then 1:30. And so on, until my 4:30 alarm. I mean, come on! Even Dave was like “Why are you awake right now?” when he came in to bed at 1:30. It was ridiculous.

So then, on the plane the next day I was trying to listen to an audiobook but I kept dozing off. My head would flop to the side or roll forward. At one point I even hit my head on the wall of the airplane because I sort of flopped over. Which I guess was better than flopping onto the passenger next to me.

It’s interesting being in Houston and seeing all the trees that are nice and lush and green, and lots of flowers blooming. It’s humid and warm, although it’s been overcast and rainy. Not that it really matters, as I’ve barely left the hotel.

Did you know Asian flight attendants dress like this? I guess their suits aren’t that odd, but the little hair bows and scarves add some flair you don’t usually see.

Last night I did get to leave the hotel and go out to dinner with Susan Hamm, a fellow NFED family member and all-around cool person. When I was planning my trip to Houston I realized that there were quite a lot of NFED people in this town. I knew Susan wasn’t far from my hotel (Houston is huge), so I contacted her to see if she could meet up for dinner, and she said yes!

She took me to a place called Pappasitos, which is Tex Mex food. When the manager found out I was from Connecticut, he gave us free dessert! It was great to spend time with Susan, who I have only ever talked to a few times at family conferences and during NFED liaison calls, but I’d had a feeling she was a kindred spirit. And I was right.

We talked about a lot of things, but one of the things that we talked about was the idea that you can always find someone who’s got it worse than you do. Or maybe it’s better phrased as, “everyone’s got something.”

She talked about how when her son Zach was born she was worried about his condition (he has EEC too), but when she saw what some of the other babies in the hospital were facing, she realized that it could have been worse. I told her about the time when I had my bone graft surgery and the girl in the hospital bed next to me had been born with half a face, and had gone through WAY more surgeries than I had. Of course I did not appreciate her struggle at the time. (I was 11). I was actually kind of pissed that she had it worse than me because I was used to playing the “special kid” card. It’s true- I played that card for all it was worth.

Last night’s Zentangle

Today I was thinking about it more, and that the “worse” isn’t always a direct comparison. It doesn’t  mean that you can always find someone else with the same thing you have, but worse. It may just be that from your perspective that they have it worse than you do in some way. For example,  I’ve had friends who have come from emotionally or physically abusive family situations, and to me that always sounded worse than the cards I had been dealt. I’ve never felt unsafe or unloved in my home, and it’s really sad to me that there are people out there who can’t say that about their own families. But who knows, maybe those same people look at me and feel glad that they haven’t had to endure all the surgeries I’ve been through. Maybe they prefer their messed up home life when it comes down to it?

I think sometimes people get so caught up in their own issues. It’s so easy to feel sorry for yourself if you don’t stop to notice what others are facing. If you just step out and look around, you’ll see that everyone is dealing with some kind of issue. It might not be as obvious as facial scars or birth defects, but, it is painful to them nonetheless.

I’m not saying it’s as simple as noticing that other people struggle too. Obviously it takes more effort, but I think noticing and becoming aware is the first step. I have to remind myself of that sometimes too.

Ok. Off to Zentangle before bed. I have an early flight tomorrow!

Peace / Love / Compassion

Going to give these gel pens a workout.





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? 

What Would You Give for your Kid Fears?

I’m sitting here listening to an Indigo Girls playlist on YouTube. It’s been a while since I listened to them, and oh man, how I’ve missed these beautiful melodies. They’re like the female version of Simon and Garfunkel. They make me want to learn to play the guitar. Their music reminds me of my carefree younger days in Vermont, when I was so naive I wasn’t sure if the Indigo Girls were lesbians, and if they were, did liking their music make me one too?

There’s more than one answer to these questions, pointing me in a crooked line.

It’s been 8 days since my last post, which stinks. That weekend I was barely containing my rage over how uncomfortable my mouth was. First thing on Monday I got in to see the dentist and had him trim off a bunch of the material. It helped, though my mouth was so sore at that point it was hard to tell if it was all OK or if more needed to be trimmed.

Immediately after that, I had to drive down to Mystic for a meeting. Of course there was a big ol’ snowstorm brewing at the time, so it took twice as long to get there as it should have. As soon as I got there, it was work, work work. I considered doing blog posts in the evenings like I have in the past, but Mystic in the middle of winter isn’t terribly exciting. I only got to leave the hotel in the evenings for dinner anyway. It was really pretty under a blanket of snow, I will admit.

The saddest sight my eyes can see is that big ball of orange sinking slyly down the trees.

It seemed that there was still material rubbing the sore spot on my gum/lip, because my mouth was still in so much pain every time I tried to eat. It probably sounds stupid that I was so insistent on keeping the bridge in, when I could have just taken it out and most likely no one would have noticed anyway. But no. I refused. At one point after lunch one day I did go in the bathroom and remove it, but no sooner had I done that when I was asked to talk extensively about something. So I had to excuse myself for a moment under the premise that I was getting a mint out of my bag while I discreetly popped the bridge back in. I didn’t want to feel like I was lisping and slobbering all over the place.

I’ll tell you, having constant mouth pain really doesn’t make for a social Heather. I was so irritated the whole time I had to keep telling myself not to punch anyone in the face. I’m usually pretty quiet anyway, but this time I was avoiding talking as much as I could because the less I moved my mouth, the better. I was so relieved to get in my car after the meeting ended. The first thing I did was pop out the bridge. I resisted the urge to throw it out the window. 

When I got home, I found some emery boards and got to work sanding down the piece that was irritating me. Believe it or not, it actually worked! I probably only sanded off a 1/16th of an inch, but it was all it needed. These last few days the sore has been healing and I’m now able to wear the bridge all day without getting violent.

If we ever leave a legacy, it’s that we loved each other well.

In other news, tonight I was supposed to give a speech at Toastmasters. I had planned to talk about the history of cleft lip and palate treatment, as this was something I’d been wanting to look into for a while anyway. The meeting ended up getting cancelled thanks to the weather (snow and 15 degrees… what’s the problem?). When I got home I recorded myself giving the speech but I had issues getting it uploaded so I’ll have to try again another time. For now I am ready for night-nights.

Temporary Discomfort

I got my temporary lower bridge last week. It is a strange feeling to have something foreign in my mouth. Despite having had all kinds of weird apparatuses (I really feel like the plural of apparatus should be apparati, but apparently it’s not) in my younger days, I can’t say I welcomed the introduction of this piece.

These past few days have been filled with anxiety. First, I wondered why I thought it was a good idea to even get a temporary, when I could have just kept wearing my slightly broken lower bridge until we decided what to do. Because we still haven’t decided whether to fix the existing one or make a whole new one.

If you’ve ever had braces, or any kind of dental device, you know it takes some getting used to. This one is pretty snug, but there are a few points that seem to be pressing against my gums unpleasantly. One edge is rubbing at the crease where my lip meets my gum, causing a sore. Of course it’s the weekend so I can’t just go in and have him sand down that piece. When I try to eat with it, there’s this unpleasant squishing feeling as it mushes against my gums with every bite.

It’s bringing back memories of my younger days when I had to wear these kinds of things all the time. The mild taste of acrylic, the dull ache of pressure when I first put it in. The nagging sores where the edges rub. I must have much less patience now, because it’s all I can do to keep it in my mouth the whole day.

I know that if I can just bear through these first few days I will get used to it, as I have gotten used to all the other dental situations in my life. And I try to remember poor George Washington with his uncomfortable dentures, and realize that I am lucky to live in this day and age where my dentist isn’t cobbling together some mix of animal and human teeth for me to wear.

Another point of anxiety is wondering if I can get my insurance to cover any of this. My dental insurance maxes out at $1500. Which is nice if all you need is one crown, right?

In other news, I started listening to this audiobook:



Ever since I was a very wee lass, I have been terrified of internal organs. It’s a running joke in my family that I can’t even look at an animal heart, much less a human heart, or any other part for that matter. I have had nightmares about being in an operating room and needing to perform surgery on someone or being forced to participate in an autopsy (as the person wielding the knife, not the person on the table).

My fear has lessened as I’ve gotten older, probably thanks to gratuitous violence and gore on TV and in movies. But I am still pretty creeped out at the thought of body parts or of dead bodies. I suppose a great deal of this fear has to do with simply confronting my own mortality. I also suspect there’s a part of it that hearkens back to my earliest days in the hospital and in surgery and that feeling of a loss of control and surrender to the doctors and hospital staff.

So anyway, I’d had my eye on this book for a while and finally got to it. I’m only about three chapters in but so far it is morbidly fascinating and I have not yet had to stop in horror. Perhaps this will help me overcome my fears a little more.


Dental Update…

Last time I wrote I was excited because I went through my dentist appointment without having my bridgework removed. My doctor has since acquired the necessary tools to remove my lower bridge, so that was how I spent this Wednesday morning.

I made a quick video about it when I got home tonight. You can see I’m trying really hard to speak clearly. It takes me back to all the times I had surgery or orthodontic work and had to re-learn how to use my mouth. It really sounds like I say “meow” at 2:34.

Tomorrow I go back for a temporary bridge, so perhaps I’ll post an update of myself struggling to speak again tomorrow night!

Never a Dull Moment

Things never quite end up the way I worry that they will.

See my video for a recap of my dentist appointment and my run-in with the law today.

Pardon the bad lighting, bad outfit and bad hair portrayed in this video. This is really just how I roll at home.