Category Archives: Living with EEC

Colorado Trip, Day 4 – Celestial Seasonings


Today we started off with a trip to Celestial Seasonings. It was not as fun as the Ben and Jerry’s tour, but perhaps that’s a given. It was nice though. Some of the interesting things I learned were: 1. Herbal tea is technically not tea if it doesn’t contains actual tea leaves. It’s an herbal infusion.  2. They have to store the peppermint (and other mints) and the white tea in separate rooms from all the other herbs and teas because the white tea would absorb all the other flavors, and the mints would contaminate everything else. We got to go in the mint room. The menthol was overpowering. It would be great place to go if you had a head cold!  3. Boulder, Colorado is Celestial Seasonings’ only packaging plant. 

Celestial Seasonings… on Sleepytime Drive

Driving to and from Celestial Seasonings, we noticed that the field around it was full of thistle.  Gorgeous!

View outside Celestial Seasonings!

Upon closer inspection, it was also full of prairie dogs. They did not want to participate in a photo shoot, but I am a jerk and took pictures of them anyway. 

Prairie dog!!
  

We then got lunch at a local deli which had some delicious vegan options. We decided to head to the University of Colorado and check out their planetarium. We didn’t really have time to see a show, so we just looked at their lobby display, which was a bit dull. 

We thought we’d check out their art gallery instead, but once we finally found it (in the rain, nonetheless), we discovered it was closed! So we decided to just cut our losses and head down to Aurora. 

After a rainy and traffic-laden commute, we finally made it to Aurora. We soon met up with other NFED families who will be participating in various research studies tomorrow. Tonight we all had dinner together and signed the consent forms for the biopsies tomorrow. 

But the best part was getting to see some of my NFED buddies, and my Ally girl! We said we are going to get matching buttcheek biopsies tomorrow. In reality, I will likely do upper arm, but we’ll see what happens… More on that tomorrow. 

Reunited with Ally!
 

Once we were back in the hotel, I had a few drinks with my EEC pals. I think the altitude may cause the alcohol to affect me more than usual. Two glasses of wine and I am three sheets to the wind. I can only hope that this blog post is not horribly misspelled and inappropriate. I guess I’ll find out when I read it in the morning.  For now, I am off to bed! 

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.

Snapshot_20150606_7
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?

Miscellany


Hi!

Man, I have been slacking with posting here (or anywhere, really) lately. I actually thought about taking a little hiatus while I try to focus on some other aspects of my life, but that just seems too severe. Plus I want to be able to write when I feel like it, and the moment I say “I’m taking a hiatus” I will probably be struck with an uncontrollable urge to write.

Let me just give you a little update on things here. First of all, today I FINALLY called the Cheyenne Mountain Resort to book the extra nights we’ll be staying for this summer’s NFED Family Conference. I called the reservation line and it automatically puts you on hold while you wait in the queue.

I’d like to just mention that the hold music was so fantastic that I wanted to sit there on hold for as long as I could. I’m serious! As I listened to it (and did a robot-like dance in my chair), I wondered if it was the hold music that they talked about on an episode of This American Life, which I used to listen to religiously. After I got off the phone I googled “awesome hold music” and found out that yes, it was the same tune.

Now that I’ve piqued your interest, check it out for yourself here. I’m actually listening to it as I’m writing this post.

Also, if you’ve never listened to This American Life on NPR, you might want to take a gander. An auditory gander.

Speaking of auditory. Yesterday I had a routine visit to my ENT. Good news! My ear is stable. Not that I really expected anything different, but it’s always nice to get confirmation that you don’t have a diseased inner ear. I also had a hearing test. Blah.

I’m not terribly fond of the audiologist my doctor uses. This is the same woman who got the silicone stuck in my ear last year, but even before that I found her annoying. First of all, she speaks really softly, which is a bad quality in a person who is working with hearing impaired people, right?

One of the other things that makes me not take her seriously is that when she does the test where she says a word and I have to repeat it, she doesn’t do a very job of covering her mouth, so I can see her forming the words on the other side of the booth.

Also, it’s the SAME WORDS over and over! They are going to think I had a miraculous regeneration of my hearing because I know it’s:

Ice cream. Toothbrush. Sidewalk. Hot dog. Backpack. Lollipop.

Add a wind sound in my good ear.

Hot dog. Ice cream. Toothbrush. Backpack. Lollipop. Sidewalk

I’ll admit it gets hard when it is just one syllable words. Sometimes I have literally no idea what she said, and I can’t even think of a word to repeat back so I just shake my head in defeat.

At a couple of moments during the test, she turned up the wind sound SO loud in my good ear that I actually had to pull the headphone away from my ear. What the hell. Maybe this is what I don’t like about her the most. She does not seem to notice how sensitive my ears are.

It seems like a paradox that I could be so hard of hearing, yet so sensitive at the same time. I have been thinking about it a lot in the last 24 hours. I am not sure if it’s because I have to struggle to hear sometimes that I am so sensitive, or if I would be this sensitive even if I could hear perfectly. In fact, maybe it’s a blessing that I can’t hear perfectly, because maybe all the loudness in the world would drive me insane.

I really don’t like loud noises. I never have. When I was growing up, my dad had a dirt bike. I don’t think I ever got within 50 feet of it when it was turned on because it was so loud. In fact, when I knew he was going to start it up, I would run into the house and cover my ears. Even now, I practically have a heart attack when a motorcycle drives by me and revs the engine.

Come to think of it, maybe I am just a huge wimp…

Well, that’s enough of an update for now. I need to hit the hay! Goodnight and good luck!

Fun Times with Nasal Irrigation


Mmm, now there’s an appetizing title if I ever saw one!

Don’t worry, I’ll try not to get too graphic with the details. I just wanted to share the joy of the neti pot as I alluded to in my last post.

I bought my neti pot in the spring of 2008. I was finishing up my last semester at UConn, and thanks to springtime in New England, I was stuffy, sneezy and generally in a sad sinus state. A friend mentioned that she used a neti pot. She explained how you’d fill it with saline solution and rinse your nose with it.

Ew, I thought. That does not sound pleasant. But being stuffed up and simultaneously runny wasn’t exactly the best feeling either so I decided to give it a shot. I went to the CVS on the corner and searched. On the bottom shelf in the ‘sinus’ aisle I found a box containing a plastic neti pot and little packets of salts.

This is the modern version of the one I have. This one is prettier.

Returning to the condo that I shared with two (sometimes three) friends, I locked myself in the bathroom to commence the nasal irrigation procedure. I mixed the salts with warm tap water** and stirred it with the little plastic spoon, right in the neti pot.

**Seeing as we were right up against a farm and we had well water, it’s pretty much a miracle that I was not immediately stricken with brain-eating amoebas. I don’t use tap water anymore, but I’ll get to that later. Let me get back to the story!

I tilted my head to the side, as indicated in the instructions, and began pouring the solution in one nostril. My nose was so stuffy that the water had nowhere to go but down my throat. There was a lot of gagging and sputtering, but after a few tries I was able to get the water to flow through one nostril and out the other.

There was a mild sense of being violated the first couple of times using the neti pot. It was also a bit of a challenge to get the salt content just right and the water temperature right. But after using the neti pot for so many years, I consider myself a pro. So here is my method.

1. Use clean water

Either boil tap water (and let it cool before using, obviously), or buy distilled water. I usually get by with about 1 gallon a week, because I don’t use it every day.

You shouldn’t use raw tap water because it can contain bacteria that can cause infections. (Your stomach is better equipped at handling that bacteria than your nose is.)

2. Warm up the water

I keep my distilled water in a cabinet, so it is at room temperature. I use a 24 oz Mason jar to warm it up. I fill it to just below the mouth (so it’s probably close to 30 oz of water) and put it in the microwave for about a minute. If the water is really cold to start with you might need to go a little bit longer, but be careful not to get it too hot. In the summer, I don’t need to warm it up much, if at all.

3. Add salt

I use one level teaspoon of plain, fine sea salt for my saline solution. I’ve seen recipes that call for baking soda as well but I’m lazy. I just dump that tablespoon into the warm water and mix it up real good.

4. Prepare the sink area

I take the Mason jar of water, the neti pot, a box of tissues and a towel to the sink. The less experienced you are, the more towel you’re going to need. Close the bathroom door. No one wants to see you do this.

5. Do it

Pour some of the water from the mason jar into the neti pot. I’m able to get about 4 neti pots of water out of it.

Lean over the sink like you’re going to spit out your toothpaste. Tilt your head so your chin is in line with your shoulder. Put the tip of the neti pot against your nostril and angle it so the water pours into your nose. This takes some adjusting to get the right angle. For me, it can also depend on how stuffy my nose is.

Don’t get frustrated if it doesn’t work or doesn’t feel right at first. Keep trying and it will get better.

After you’ve done one side, gently blow your nose. Don’t hold one side closed or try to force anything out. Just kind of a heavy breath out through your nose is good.

Repeat on the other side.

6. The Aftermath

Blow gently to get excess water out. It may continue to leak out for a few minutes after. Or maybe that’s just me.

Wipe up the wet counter top with the towel.

Rinse the neti pot and the jar and let air dry.

Why do it?

Ok, maybe you read all this and you still don’t see the appeal. Maybe you’re one of those lucky people who does not have any problems with your nose, and in that case, you probably don’t need to do this. Why are you even bothering to read this?

Do you remember going swimming as a kid, either in a pool or in the ocean, and having water forced up your nose when you did a sweet cannonball, or maybe when a wave hit you in the face? Yeah, it might have hurt for a moment, but do you remember how it felt afterwards? Your nose was clear and every breath was delicious.

The neti pot gives you that kind of relief without the pain of cold water being forced up your face. It’s like a controlled nasal flush.

Have you tried the neti pot? What did you think? Are my instructions helpful?

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.

A Brief Recap of Recent Life


Hey ya’ll! My apologies for the serious lack of posts lately. As often happens, life seems to rise up and consume my time like a ravenous beast. I haven’t even taken time to do my morning Zentangles this week, which is an outrage. Here are some of the things I’ve been up to:

Last Saturday I noticed my upper bridge was a little wobbly. Ugh! I think I’ve mentioned before that it is cemented on to four implant posts. I guess that was cutting-edge technology in 1997, but it doesn’t seem to be the best long-term way to give a person a solid grille.

So I noticed it was wobbly, and being the neurotic person I am, I immediately began wiggling it to see how loose it was. Like a kid with a loose tooth, I couldn’t leave it alone. So of course I wiggled it until it came off. I had denture paste in the medicine cabinet, which will hold my bridge in enough to get by for a few days. So I used that, but then I was annoyed by the gross denture paste slime in my mouth, and the fear that anytime I talked or ate, the teeth would fall out again.

Fortunately I was able to get in to my dentist on Monday to have it cemented back in. Still that was an adventure in itself because while I was there, he decided to try and fix my bite alignment, which has been off lately. So he just randomly started grinding down one of the crowns in the back of my mouth. One of the crowns that I paid over $1000 for less than two years ago.

You may wonder why I would let him do that. I thought it was just one point of the tooth that was high and causing my bite to be out of whack, so I thought it would be a quick little adjustment. By now you’d think I would have realized that nothing with my mouth is ever quick. It ended up being a half-hour process of grinding down random bits here and there, lots of rinsing and spitting, and biting on carbon paper (or whatever that stuff is) and repeating the process to get my bite aligned. Even now it’s not really perfect, but I think he had to stop before grinding my molars to stumps. Ugh! I hate my life!

Just kidding, I don’t really hate my life, but I hate moments like that. I was lying there wondering why people are turned on by things like 50 Shades of Grey and BDSM, because I feel like my dental experiences involve dominance, bondage and masochism, and let me tell you, it does NOT turn me on. It just makes me want to punch someone.

Moving on. In exciting news, I finally bought a new car this week. I’ve been talking about it for at least five years, but there was always some obstacle that prevented me from doing it. Namely, being up to my ears in student loan debt. But in the last couple of years I’ve been saving money like a squirrel hoarding acorns and I finally had a nice amount in my savings account so I feel comfortable having a car payment in my life again. My credit score was through the roof, so I was able to get a ridiculously low interest rate, which also made me a happy camper.

In equally exciting news, tomorrow is the NFED Regional Family Conference in White Plains, NY. It sounds like there are a lot of people signed up to go, and the weather forecast is clear, so it should be a great turnout. I’ll be zoom-zooming down there in my new car and I can hardly wait to reconnect with people and to meet new friends!  I will write a blog post about that once I get back.

Now it is time to get ready for work! Happy Friday Ya’ll!  Here’s a little happy tune for you.

Throwback Thursday – Autobiography of a 16 Year Old Me


In my junior year of high school I took a developmental psychology class and loved it. One of the projects in the class was to compose an autobiography and pay attention to the stages of development throughout our lives.  So here is what I wrote, with a few edits for brevity and privacy. Even with my edits, this is super long, so I’m going to break it up into 3 posts. Keep in mind that I was sweet (and innocent) 16 when I wrote this!

The cover has seen better days.
The cover has seen better days.

Infancy and Early Childhood

I was born EEC Chick in June 1980 to Mark and Susan in Abington, Pennsylvania. I was a healthy 7 pound, 21 inch baby, but it was a shock that I was born with a cleft lip and palate and cleft hands and feet. My mother didn’t even get to hold me right away because the doctor rushed me off to examine me. I had to have many surgeries those first few months of life to close up my lip and palate so I would be able to eat and look presentable.

I was an only child for the first four years of my life. I remember we lived with my grandmother, who I called Gram. Both Mom and Dad worked so Gram took care of me during the day. I started talking at about a year old. My first words were cookie, eye and flower. I began walking in September 1981. I stood myself up with the help of the television stand and walked towards Mom and Gram as they sat on the sofa watching Lawrence Welk.

Our family went to Sunday School and Meeting (Church) every Sunday, so I had friends there from the very beginning. Becky, who was six months older than me, and Joanna, who was six months younger. We had a lot of fun together. Becky’s older brother Ben would play with us too.

I don’t remember much about my surgeries except for the one I had to fix the big toe on my right foot. It stuck out so far that my mom had to cut a hole in my shoe so it could stick out. I remember Mom, Gram and I got up really early and went to the hospital. When we got there we had to wait for a while and then my doctor came and asked me if I was ready. I said I was and he picked me up and carried me into the operating room. There he put me on a table and put a funny mask on my nose and asked what flavor I would like, strawberry, banana, chocolate, or bubble gum? I asked for banana and soon I was sleepily breathing the banana scented anesthesia. I was really grouchy when I woke up. As soon as I woke up I was taken to the physical therapy room so I could learn to walk on crutches. I was really mad and I screamed and yelled until they let me go back to my room and go back to sleep. All I wanted to do was go home! Once I did get home it wasn’t long before I was walking again despite the cast on my foot.

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.

When I was three, my mom became pregnant with her second child. I was going to be a big sister! I couldn’t decide whether I wanted a girl or a boy but my mom told me not to worry, God would choose what it would be. So, 6 days after my fourth birthday, my first brother Kris was born. That year I began taking swimming lessons at the YMCA. I couldn’t wait to begin. I loved swimming in our pool at home and I was ready to make new friends. My mom was nervous about how the other kids would react to me, but her fears were quickly overcome when she met my teacher, Suzanne, who had exactly the same things wrong with her as I did! I had a great time there. Swimming was my favorite, but I also loved arts and crafts and gymnastics too.

Around that time, my great grandfather died. I wanted to go to the funeral but Mom wouldn’t let me. I had all these questions like, would he be naked? What would he look like? Was he going to be a skeleton? And of course, why can’t I go? Mom said funerals weren’t for little girls. Oh well, I had fun because my cousin Karen babysat me and I thought she was really neat. She was 16 and I wanted to be just like her. Not long after that, Gram moved out. She was going to go live with my great grandmother, who needed someone to take care of her. I was very sad that she wouldn’t live with us anymore, but I would still see her a lot because she would be less than an hour away, in New Jersey.

One day I was out playing in the yard when I heard a voice. “Hello, little girl!” At first I was scared because we didn’t have any neighbors and I couldn’t imagine where the voice was coming from. Then I realized there was a woman and a little girl about my age standing between the grapevine and the big pine tree that separated our yard from the next. “Hello, this is Christina, your new neighbor!” said the woman, motioning towards the girl, “and I’m her grandmother. Who are you?” She smiled as I walked over shyly. “I’m Heather,” I whispered “Let me go get my dad.” I ran into the house and found Dad in the kitchen washing dishes. He came outside and talked to the woman. I shyly asked the girl to play and we hit off well. Actually, to say we hit off is rather funny considering how much we fought. It seemed that we finished each of our play sessions with a fight and I would swear that I wouldn’t play with her again for a year, but by the time the next day rolled around we had forgotten about the fight and were ready to play again.

In September 1985, I started Kindergarten at McDonald Elementary School. I was very excited, I couldn’t wait to go to real school like a big kid! The first day came and I climbed onto the enormous yellow school bus that would take me to the even bigger red brick school. I thought Mrs. Schulden, my teacher, was kind of scary because she was so strict. Once, we were taking a test and she had set up books on our desks so we couldn’t look at the person next to us. I was confused about one part and I leaned over to see what the girl next to me put on her paper. (Little did I know that Mrs. Schulden was standing behind me.) She pushed my chair in hard and fast so that my ribs hit the edge of the desk. I tried not to cry, not because it hurt, but because I had done something bad and I felt ashamed.

One day just before it was time to go home, Mrs. Schulden asked if any of us had left an umbrella in the coat closed the day before. She held up a blue plastic handled umbrella with a clear plastic top that had little fish on it. Wow, I thought, that is a really neat umbrella! I raised my hand when I saw that no one else was claiming it. “Are you sure it’s yours Heather?” asked Mrs. Schulden. I nodded, and the umbrella was mine.I told my mom that a friend had given it to me at school. A couple of days later, Mrs. Schulden asked who had taken the umbrella because a girl in her afternoon class had lost one. Everyone knew I had taken it but I claimed it was mine.

Riding the bus was always interesting. Chrissy and I sat together and once we got in a big fight and the bus driver told us that if we didn’t knock it off, he’d send us to prison. That quieted us down quite a bit. We also had problems with boys. Once, I got punched in the nose by one and then Chrissy tried to beat him up before the bus driver intervened. One boy in particular, whose name was David, made fun of me to no end. he called me blondie and was always teasing my friends and I, until one day Mom got on the bus (much to my embarrassment) and told him that if he didn’t leave me alone, he’d have to deal with her. I guess that was a pretty scary thought, because he never bothered me after that.

—- To be continued —

Whew! My hand is tired from typing all that out. Obviously I don’t have the original word document from 1997. Hah. For some reason when I type, I just hold my left thumb up in the air all the time, and after a while my hand starts cramping up. Awkward.

Anyway… If you’re curious to know what I edited out of this wordy introduction to my life, it was about 20 “I remember”s and a section where I talked about the senile old lady who lived next door before Chrissy’s family moved in. How odd that I found that to be something relative to my life when I wrote this autobiography.

Also, it’s kind of alarming to realize how much of my early life I have forgotten. I have NO memory of being punched in the nose on the bus, and I definitely had not thought of Mrs. Schulden or the umbrella I stole in many years. (What is with me and umbrellas?)

I hope you enjoyed this throwback within a throwback. Next week I will post the ‘Childhood’ section, where there was lots of learning and playing and a couple more surgeries to boot.

Awkward Moments with Artificial Teeth


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1. When you refer to your implants and people look questioningly at your chest.

2. Not being able to feel if you have spinach, seeds, bread – anything – stuck on, in-between or around your teeth.

3. Getting massive quantities of food stuck underneath the bridgework.

4. Needing to use a WaterPik to feel like your mouth is actually clean.

5. Needing to bring two kinds of floss, toothpicks and a variety of brushes when travelling without the WaterPik.

6. Having to keep a stash of toothpicks in your desk at work, in the console of the car, and in your purse for those on-the-go moments.

7. The glare in photos.

8. Forgetting you have teeth (or just how far they extend) and smacking them with your glass while drinking.

9. Getting comments like “Wow, your teeth are perfect! How’d you get so lucky?”

10. Breaking a few teeth off your bridge while biting into a chocolate lollipop.

Don’t get me wrong. I am thankful on the daily for my dental implants and bridgework. Even with the hassle of keeping them clean, and the occasional incident (I’m not kidding about breaking off teeth with lollipops, as well as apples and chocolate), I love having a full set of teeth to smile with and to show off when I talk. My self-confidence is ten times greater than it was before my dental work was complete. I will happily WaterPik my evenings away if that’s what it takes. But sometimes you’ve just got to laugh at the silly things that happen when you’ve got a mouth full of man-made materials.

Rocko
Even cartoon wallabies get food stuck in their teeth!

Throwback Thursday – Train Wreck


Several years ago, I came across a box of my school things. I’m certain the contents of this box will provide much fodder for the Throwback Thursday series, but for today I’m just going to comment on my memories of learning to read and write.

I was one of those lucky kids who learned how to read easily. I can hardly remember a time where I couldn’t read. Once I started reading, I couldn’t stop. I would read everything I could get my hands on – even reading all the labels on the soap, shampoo and toothpaste in the bathroom. I wanted to read EVERYTHING!

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My second grade reading workbook. Hated it!

At school, reading class often consisted of reading aloud from our text book, one student reading a paragraph and then someone else reading the next. I quickly tired of dragging along while some of the kids stumbled over words, or read at a snail’s pace. So I would read ahead in the book, and end up reading the whole story before the group had moved past the third paragraph. Then I would grow bored and flip ahead and read something else in the book, or I’d doodle and daydream until it was time to do our workbook lessons.

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My first recorded use of the word “hate” in reference to school.

Does anyone enjoy doing worksheets? This I remember being even more agonizing than listening to my classmates read out loud. Sadly, being that this was 2nd grade, I had another 10 years of worksheets ahead of me. Dun dun dun!

I much preferred when we were able to do creative writing exercises, like contemplating potential disasters.

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What might cause a train accident????????????????

I’m almost certain that my teacher did not ask us to write about what would cause a train accident. Unless one had recently been in the news and she was helping us work through our fears, but I kind of doubt it.  Whatever the case, I got a +400! Wow!

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!

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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.