Category Archives: My normal life

Snowy Snowfall


Hey ya’ll!

I’m sitting here at my kitchen table while the snow falls lightly outside my window. We actually got let out of work early today because of the weather, although it’s not supposed to pick up until tonight. According to the predictions, it’s going to be a doozy. Up to 30″ in some spots. There’s a driving ban in effect at 9 pm tonight.

I’m always excited to have a snow day. There’s something really cozy about looking out the window and seeing nothing but drifts of white snow as far as the eye can see, and knowing that you don’t have to leave the house for hours. As long as the power doesn’t go out….

Dave and I have already got the extra blankets out, buckets for toilet water, and bottles and jugs in the kitchen for drinking, hand-washing and tooth-brushing water. I don’t know if anyone is familiar with that experience, but it’s quite unpleasant to be without toilet-flushing water.

When I was growing up in Southeastern PA, I don’t remember that we ever lost power from a snow storm. I’m not saying it didn’t happen, but I’m quite certain it did not happen. Of course I can count on one hand the number of huge snow storms we had back then. I only remember losing power during summer storms, and never more than a few hours at a time.

It wasn’t until we moved to Vermont that we had the experience of lost power during a winter storm and for days afterwards. Fortunately in Vermont, most everyone has a wood stove or two in their house that is the main heat source. So losing electricity is more of an inconvenience than a health hazard. We could even bring in buckets of snow to melt and use for toilet-flushing.

Here in Connecticut, we do not have a wood stove, or even a fire place. The last time we lost power during a storm was during the “October Snowstorm” in 2011, when over a foot of heavy, wet snow fell and knocked down trees and power lines all over New England. Our power was out for an entire week. A week! During which I had to report to jury duty! Even though it was October, it was still quite chilly, and we would go to bed wearing thermal underwear under our pajamas, and sweatshirts with the hoods up. Then piled on the blankets and comforters and a cat for good measure.

Luckily, we do have a propane stove, so we can make tea and warm food, which is especially helpful when you’re freezing. We can also warm up water to bathe in, and when you boil water in a cold room, it does help to bring up the ambient temperature just a bit. A little bit.

I’m crossing my fingers that we don’t need all this water we’re stocking up, and that we won’t have to shiver under blankets any more than usual. I’m looking forward to a snug night of cuddling and catching up on reading materials, and perhaps a bit more Zentangling. If it were up to me, I’d hibernate like that for the whole winter!

Enjoy the snow, folks! Unless you’re reading this from a non-snowy place, and then enjoy your normal life! 🙂

Dave jumped right in after the big storm we had in 2013. I have a feeling it might look like this again tomorrow.
Dave jumped right in after the big storm we had in 2013. I have a feeling it might look like this again tomorrow.

Happy 2015 from EEC Chick!


Bitmoji Me
*Note, cartoon version portrays more fingers than the real life version actually posesses.

Happy New Year!

I’ve been away from WordPress for a couple of weeks now due to all the holiday fun that was going on, but now it’s a quiet, work-free afternoon and so I cannot delay posting any longer.

My holidays were quite lovely and I hope yours were too. I always enjoy spending time with my family, and now that everyone is grown up and off doing their own thing it is even more significant when we can get together for a few days. We had a fun couple of days filled with food, games and winter walks. You can’t get much better than that!

Dave got me a laptop for Christmas, so that I can write more (and so I’ll stop using his). I’m pretty excited, as I haven’t had a personal laptop in ages. This afternoon, using my new laptop is proving difficult because the cats are taking turns climbing all over me while Dave is napping on the couch. Honestly. I don’t know how people can work from home when they have cats. Whenever I try to do anything at the table, someone’s got to be climbing all over it. It’s like having kids who will never grow up.

Ahem. Anyway, since it is January 1, 2015, I suppose I should do the typical reflection on the past year and predictions or goals for the year to come.

2014 started off on a low note, as one of the first moments involved going down to New Jersey for Gram’s funeral. The up side of that was getting to see a lot of family who we really don’t see much of otherwise. Gram’s passing was tough and I think it cast a melancholy hue over me for much of the early part of the year. It also got me thinking about death in a spiritual sense, which was one of those things I had been ignoring prior to that because it was too hard to think about. That’ll be something for another post (or another blog entirely). At work, I was able to move laterally within the company, and so started an intense journey of learning the ropes of a whole new department in the midst of one of the busiest years yet. The plus side of that is that I earned about 25% more this year than I did the year before. Woo hoo! I probably also worked 25% more hours than I did the year before too, so boo that. But I do appreciate the extra dough, at least until tax time rolls around and then I may have other feelings. Overall it was a year of major growth for me. I’m talking spiritual, emotional and skill-set growth, not waistline, though that may have expanded just a bit too. I’ve accomplished my goals of writing more, spending more time ‘offline’, and finally, of joining Toastmasters again. Missions accomplished.

2015 is off to a good start so far. Today we had a leisurely morning with a late breakfast, and then we took a nice walk on the rail trail. It was cold but there’s not one particle of snow on the ground so it doesn’t feel like we’re in the midst of winter. I’m sitting here with my new laptop, drinking a bottle glass of wine, I have a cozy house with a handsome man and two fuzzy kids, what more could I ask for?

As far as the blog goes, I think I did a pretty good job of keeping up with posting throughout the year, despite hectic schedules and bouts of writer’s block/procrastination/self loathing. I’d really like to post more often, but let’s be honest, how much can I really write about EEC? I am mulling over some ideas for this coming year, such as expanding the blog (or making a new blog) to cover more topics that I’m interested in, like environmental issues, mindfulness/meditation, religion/spirituality, vegetarian/veganism and things along those lines. I do still have EEC-related things I can write about, especially as I am about to embark on a new dental adventure, if my insurance company is willing to cooperate.

I’ve also been contemplating being more open with owning my blog. I know most of you who read it know my real name, and I’ve probably let it slip here and there, but I’m going to change my pseudonym to my actual name. If I ever want to get anywhere as a writer, I need to own up to the things I’ve written, right? It’s a little scary for me, because despite all I’ve written about overcoming my fears of rejection and shame about my physical issues, I am still hesitant to open up fully. I still have moments of worry that people are going to take the things I’ve written and use it against me. Even if it’s just superficial, i.e., calling me a freak or a weirdo because I was born this way. In my life I have come across some rather superficial people who cannot get past my physical anomalies. I tell myself that it is their problem, not mine, but I still can’t help but feel a bit hurt about it. I think that’s a good reason to keep pushing myself to share though. As I’ve written before, outside the comfort zone is where the magic happens!

Happy New Year to you all, and thanks for keeping up with my blog all this time. May 2015 be a happy and prosperous year for you.

Namaste

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.

EEC Chick is One!


One year ago today, I put on my big girl panties and I started this blog. You can see the first post here.

http://instagram.com/p/bNDxJtB8Dj/

It hasn’t been as easy keeping up the blog as I’d expected, but it has been rewarding. Writing has long been a therapeutic pastime for me. I’ve gotten lots of positive feedback from people. People with EEC have told me that they really relate to my stories and they have felt many of the same things that I’ve felt. People without EEC have said that my writing has helped them understand how it feels to be affected by a syndrome like this. Hopefully I’ve made a lot of people laugh too. 🙂

This summer, while I was at the NFED Family Conference, I began telling someone new about my blog. A mother of a boy affected by EEC was nearby. She opened up her bag, pulled out a stack of papers and gave them to the woman I was talking to. It was print-outs of my blog! She said that she always printed them out to show her son. I was pretty excited to see how something I had made had such an impact on someone else. Something I’d made while sitting around in my pajamas and drinking tea, no less!

So, a heartfelt thank you goes out to all of you who have supported me and given me feedback this past year. I appreciate it more than you know.

Namaste

PS. Did you know that I also contribute to the NFED blog? My latest post can be found here.

Calm on the surface, but paddling like mad underneath.


Hello! Just a quick update to let you know that I am still alive, although rather tired.

Earlier this week I took a quick trip to Chicago for work, but ended up stuck in the airport for nearly the whole day on Tuesday. I didn’t get home until 1am, and I’ve been feeling pretty sluggish ever since.

There are so many things I want to write about, and hopefully I will get into a better routine soon. I have this idea that I can wake up at 5 am, meditate, go for a run, write for an hour, have breakfast, shower and dress for work by 8am. Which, really, seems doable, right? I mean, it’s three whole hours at my disposal. There was a time that I used to get up and walk 3 miles and do a nice yoga sesh before breakfast. It was awesome. I can do it again, right?

I want to write about confidence, and how it comes and goes in waves. Sometimes I am taken back when I notice how nervous and uncertain I really am underneath my outwardly calm persona.

I want to write about how I just spent three days among strangers and not one of them seemed to notice that my hands were different. Or maybe I was just too oblivious to notice.

I want to write about being in an airport, surrounded by hundreds of people and making eye contact with some of them and wanting to know their stories, but not knowing how to begin. And in the odd moments of actual conversation, how I suddenly became nervous and wanted them to go away because I couldn’t hear them very well.

Or how, going out to dinner with colleagues in a very crowded and noisy restaurant was so frustrating because I could not hear the person on my left at all. Fortunately, he wasn’t talking much. Would having a hearing aid have helped this situation, or would it have just made everything else louder? Do I really want to go back to the hearing specialist and risk getting a glob of silicone stuck in my ear again?

So there’s some topics to pick up on next time I have a moment.

For now I shall catch up on sleep.

Love,

Me

 

 

Oh, hello!


Happy New Year, and all that jazz.

Here is something I have been pondering lately:

I tend to be (over)sensitive to the way people smell. I really dislike smelling bad breath and gross body odor. I’m not averse to all body odor, I mean, I spent part of my youth in Vermont, among pot-smoking, dreadlocked, and wool-sweater-wearing people.
But I’m getting off track.

What I’ve been contemplating is how I haven’t ever noticed any of my doctors smelling bad. Or smelling much at all, for that matter. I wonder if they have to take some kind of personal hygiene class in med school? Or if it’s just that the type of people who become doctors are also the type of people who take pride in regular bathing and grooming habits.

Just some food for thought…