Sunday, June 9, 2013

Will I Be Pretty? Part 1

I saw my life change before my eyes. It all flashed by like flickering images on a busy street. I was growing up. My body was changing from a child's to a woman's. And out of no where, Mother Nature sneaks up and slaps me in the face. My baby fat seemed to melt off as fat started to fill in other more appealing areas.

As I turned and looked at my naked body in a mirror it was as if I could hear Mother Nature's evil cackle. It was noticeable now. I couldn't just wear a shirt anymore I needed.... a bra. A dreaded word in my child's mind, something I tried to deny would ever happen. But as I stood there pinching and pushing my swollen breast I knew it was true. Once they started to swell my breasts would not stop! I was eleven and already had an A cup, as big as my Mother was in adulthood. All I could think was, will I be pretty?

The question throbbed into my very core as I knew I couldn't hide it anymore. I couldn't cower behind the mask of childhood. They all thought I was charming, adorable....normal. And I knew I had to confront it. I had to attack the fact that I only had one breast head on. No cowering behind a corner in the shadows.

I geared myself for the worse and all I would think was "That Bitch!" Of course I didn't know how to cuss at the time but if I did that's what I would be thinking!

My mother spent a few days making phone calls. Like me, she was trying to deny the fact that one day her daughter would need a solution to her "condition". Perhaps she thought it would come later in my life; perhaps she was trying to deny it as much as I was. But whatever the reason she scrambled to find a solution, even if it was temporary, in her mind at least.

The calls had been made, a solution found.

As my mother held my hand she towed me into a store that was unlike any I had ever seen. On the walls heads with make up on them displayed an array of colored wigs in every hair style imaginable. While underwear filled every inch of the store. But this wasn't the cute underwear that I saw my sisters wearing, this was stranger.

My mother and I were greeted by a sales clerk. Asking my Mother what she could help her with. My mother smiled and quietly explained the real reason we were there. I saw the sales lady turn her head in my direction. She made eye contact with me for only a few fleeting seconds, but the look she had hidden behind her smile was, a mixture of sympathy, fear, sadness and distaste . I could tell she had never had a client like myself. She was used to dealing with women who had lost their breast through surgery. Not an ugly duckling girl who had never possessed two.

I spent the next few hours of my life having this woman dress and undress me like her own personal doll. Trying on fifteen different types of bras and ten different types of breast forms. My bust line was touched, prodded and measured; all the while I felt like I was being sized up and conformed to the ideal of which society measures them all.

I left the store with an elastic pair of material stretched around my midsection and a sticky feeling breast form that some times collapsed into my chest.

All the while wondering. Will this make me pretty? Will this make me normal? Will this make me better or thinner?

Then coming to a realization much wiser then my age. I discovered that all of those things would only come from within, I was in control. And not even the most magical bra in the world could make all of my imaginary shortcomings disappear.

This new information changed my thinking. And as I was faced with an even more challenging decision in the near future. This realization helped me make the right choice for me.

And apparently I'm not the only one. This woman says it just how I feel. We shouldn't just be defined by a little five letter word.

Until next time...

You're Perfect just the way you are,
No one's as Special as you.

Sunday, June 2, 2013

A New Name, A New Life

The most dramatic part of my childhood was finally settling down. The move was over! We were temporarily settled into our new apartment. A three bedroom apartment with six people. This did not go over well. Especially since temporary turned into a year. :\

I had just turned eleven and was excited to start a new life. I met a TON of new friends. I had at least four new friends that I played with on a regular basis. I was in heaven! My problems with sleepovers, parties and play dates were a thing of the past. I felt so accepted and loved.

There was even... a boy! Oh I thought he was so cute! This was the first boy that I had liked that I knew liked me back. He had kissed me on the cheek. Oh I think I almost died with embarrassment!

We had moved somewhere very very hot. I spent most of my days in the pool and found that I was a fish out of water. I told a lot of my close friends about my Poland Syndrome. They didn't care or mind. It seemed that I had finally found my place in life.

I found myself becoming a new person someone not even close to who I was before. Before I was a shy and lonely little girl; now I was becoming an outgoing fun young woman. So I chose a new name to go a long with new me. Qora, pronounced like Cora, that traditional spelling, was a self chosen name for myself and actually shows more of my personality then my birth name could ever have.

I started to ask my friends to call me Qora instead of my birth name as an experiment. The one person that took to it the most was the boy I had a crush on. He would always call me Qora and it would make me blush. I was getting braver and braver around him.

Then one day, we decided to go to the pool together. We went with all of my friends. I was still fairly young so you couldn't really see my PS but I was starting to show more.

My friends and I were all laughing having a good time. We were taking turns jumping off of the pools side. There was a large cliff and a waterfall. I jumped in the pool with my friend when I came up my swimsuit had shifted underwater. My friend and I fixed it as quickly as possible, but it was too late my crush had already seen.

I acted like nothing was different and nothing happened, because honestly nothing did. I was still the same me, but he spooked. He made up an excuse and got out of there as quick as he possibly could.

My first heartache.

I never really saw him after that. It hurt right at first but I was surprised at how quickly I got over it. Even at such a young age I braced myself against the pain and came out on top of it. I don't know if being bullied helped me get over this in any way but it definitely prepared me for the sting of rejection and pain.

I moved on as if nothing had occurred. I brushed that boy aside like I would do countless others. I didn't know it yet but deep down inside I had a feeling that there was something better out there and that I deserved something much better then some guy that spooked at the sight of anything different.

Taking this path of confidence and being different was very important for what was going to happen next. Instead of being heart broken over one stupid boy; I rose above it stronger and happier. With the knowledge that there were many more out there for me, and he was obviously not one of them. I was beautiful and if he couldn't see that then he was the one who was at a loss, not me.

Until next time....

You're Perfect just the way you are
No one's as Special as you.

Monday, May 20, 2013

A Fresh Start

I was sitting on our couch in the large family room. Surrounded by my mother and sisters. We had been gathered together by my father. Who told us he and our mother had news.

News, what kind of news? What kind of news would make for a family gathering?

I was ten years old. My sisters were much older, with my oldest sister about to graduate from high school in a few weeks. We all sat, you could feel the tension in the air. I stared from face to face not knowing exactly what was going on. Wondering what was going to happen?

My father came to sit down with a binder, which was much like him, always prepared. Him and my mother looked at each other smiled nervously and delivered the news.

And what news it was. My sisters all jumped up in an uproar screaming at the top of their lungs. "How could you do this to me!" "I hate you!" "I won't do it!" all three of them ran off balling their eyes out. I'm sure they threw themselves dramatically on their beds planning what they could possibly do to divert this disaster; which in their teenage minds was the end of the world. I sat quietly on the couch.

A move? The word almost seemed strange, foreign. My friend had moved, now me? Was this the end of the world?

We were leaving everything we ever knew. My whole family, my grandparents, aunts and uncles, cousins. My sisters were leaving their boyfriends, their friends. And even with all of the people I knew were going to be left behind, I only had one question. Just one that I couldn't wait to ask; that almost burst out of my skin as I sat patiently, waiting.

As my father turned to me and smiled nervously. My question burst forth like water rushing out of a broken damn.

"When do we leave?"

I was overjoyed! I was scared! I was happy! 

What did this mean to me? A fresh start and opportunity to start over with new people. Get out of this small town that I hated so much. Here I was already smeared the freak with one breast. I couldn't wait to go.

My father told me it was going to be in a couple of months. We were moving somewhere I had never been or seen or experienced. I asked him where we would be living and he said he wasn't sure yet. He had gotten us a temporary apartment until we found a house.

I didn't know yet but this move would change my life for the better. It would change everything of who I was. I didn't have to be ashamed. There would be new people that didn't know anything about me. It was like starting over and I could feel almost like I was being wiped clear and a new girl would be written in my place.

A girl that wouldn't be afraid or shy or weak. A girl that would stand up for herself and be wiser with her decisions. A girl that the world should watch out for. And most importantly a girl who would be instilled with confidence and without the fear to be afraid of her own body and her own Poland Syndrome. The move changed me. I changed myself.

Poland Syndrome changed me, defined me. But this time around, this chance. I wouldn't let it defeat me.

Until next time...

You're Perfect just the way you are
No one's as Special as you

Tuesday, May 14, 2013

The Silver Lining

My life is the true definition of "When life gives you lemons, make lemonade." If you really want your life to be happy it will be. It's just how you look at it. Like my mother told me if she had one breast it would have broken her. Me, not even close. I mean I had rough patches and more then a few moments when I broke down in tears. But that doesn't mean that I didn't try and be happy.

Like I've said before I didn't have many friends when I was very little. I spent most of my childhood being teased, bullied and ignored. As the years past I found myself nine years old. A milestone for me. Surprisingly there was one person that made this point in my life special. Her name was Jessica and she was my first and only true friend.

Jessica's family was dirt poor. Like ramen noodles for dinner every night poor. All of the other girls that were my "friends" were very well off. I don't know if this made a difference in her accepting me or not but it seemed like she and her family were kinder then other's I had met before.

At a sleepover both of us decided to play dress up, I was nervous and tried to hide myself as much as possible. As we were adorning ourselves with pretty dresses and pretending to be princesses I turned to see her staring at me. She had noticed that I was different and was curious. I took a deep breath and explained. I was afraid of what would happen next. I told her that it was how I was born and that I only had one breast. She smiled and shrugged and said a sentence that changed me forever. "You look the same to me." I asked her to keep it a secret. She never told a soul.

It gave me hope. After my short nine years of living I had found someone that didn't care if I had one breast and treated me like any other girl. We spent almost all of our time together I saw her almost every day. And when the other girls teased me she would stand up for me.

She made me realize that I didn't have to hide and that there was nothing wrong with me. Her friendship meant more to me than I could have ever explained to her. I don't think she ever knew how much she really meant to me. She started a path for me that changed my life forever. It made me look at myself in a completely different way and I knew that I could find other friends in the future.

I was heart broken when she moved away. Her father finally found a job which was great for their family but it was far away. We kept in touch through letters for a little bit but this was before the convenience of social networking.

I still think of her often and hope that she is well. I will never forget my first friend and how she impacted my life. I will always be grateful to her for showing me the first kindness from a friend. It opened up doorways that helped me become friends with many more girls.

If you have children encourage them to love and accept people and other children that are different and treat them like anyone else. You never know how much this could impact someone's life. Kids can sometimes be so mean. If one person reaches out, just one, it could change someone's life forever.

Thank you Jessica, for being my friend.

Until next time...

You're Perfect just the way you are
No one's as Special as you

Tuesday, May 7, 2013

Cinderella and Three Sisters

Okay I'm not sure if I'm Cinderella but that is what my father always called me. He always said I was the sweet little sister who had three evil step sisters. My father seemed to favor me when I was younger, much to the dislike of my sisters.

My sister's weren't always the nicest to me when I was younger. Granted I was a little brat, like I said before I was a hot head and had a temper. I probably deserved some teasing at some point. But the constant teasing, bullying and even abuse just went too far.

I was the youngest and the odd man out. Between me and my sister, closet to my age, there was a four year gap. All of my other sisters were two and three years apart. They were just closer in age and excluded me.

I'm sure a lot of the bullying was done just because of the age difference. When I was seven my sisters were eleven, thirteen and sixteen. There's just a big gap, I was at such a different level then them. But every so often I was teased about my breast. My sister's would steal my breast form and throw it about in front of their friends. They would tell their friends my secret. And constantly take my breast form without asking, to wear in their own bras so that it would look like they had bigger breasts. While constantly calling me names if not about my breast then other parts of my body. I tried to laugh it off like it was a big joke, but then I would go back to my room and cry.

It was hard, especially coming from my sisters. I got a lot of teasing from my friends, but with my sisters I had to be around them all the time. It all became a vicious cycle the more they were mean to me the more I hated them and were mean to them, then it repeated.

The more they bullied and teased me the more I felt it was because of my one breast. It all seemed to come back to that. They didn't understand and treated me like I was different just like my mother.

My parents always stopped such behavior and punished my sisters. It was never allowed in my house, but it still happened regardless. All my parents had to do was leave the house and something bad would happen. My mom told me that they started to take me with them on errands because they were concerned for my safety. One of my sisters had tried to strangle me before and they were afraid that she would kill me.

Not a good environment to be in at all.

It was frustrating for me. I had no friends, not even in my family.

On the outside we seemed to be normal. Nice house, nice cars perfect middle class family living the dream. But I always felt like an outsider.

These problems got better as we all became older. I wouldn't put up with their crap anymore and I could protect myself from any physical abuse. But it never went away entirely.

My relationship with my sisters got overall better. I'm great friends with one, good friends with the other two. But the one sister that tried to strangle me we still struggle with our relationship. Not like that's a big shocker!

Don't let your other children tease, bully or abuse your child with poland syndrome. If this is happening you can try and let your other children see how it's effecting them. I knew it was me that my sisters couldn't stand so much, but never knew why. I always assumed it was because I was different from them and that's what stemmed all of the other bad things. You can't even imagine how this made me feel. I didn't feel like I was good enough and was very sad sometimes as a little girl.

I would try very hard to be happy. I would always smile, play outside and try and make new friends. But every friend I would confide my secret too would blab to everyone. It was hard to trust people. I wanted to really bad but I eventually built up a wall.

My mother realized later that she should have taken action and done something more with my sisters. She was sorry that all of that was going on and she wished she protected me more.

But no matter how down I got I managed to lift myself higher. It took time but I became stronger and discovered things about myself that I wouldn't have before.

You can't protect your children all the time, but I would hope that you could at least protect them from family.

Until next time...

You're Perfect just the way you are
No ones as Special as you

Wednesday, March 13, 2013

I Wish My Mother Taught Me Differently

As I'm reflecting about childhood I can't but help but ponder my own. There were really great moments, but before I turned twelve it was really hard. Why I'm pondering my childhood is because I have a child. An 18 month old boy who's currently rubbing yogurt in his hair. Oh you got to love him :). He is the joy of my life. I'm happy to say that with all that I encountered I rose above it and I found my happily ever after.

But before I get to the end of this story I want to talk about the beginning. Growing up as a girl in a society full of perfection, especially towards a woman's body was extremely hard. However, add to that a girl who was born with one breast. I must say I struggled a lot with my self image.

Don't get me wrong my mother did what she thought was best. Honestly she didn't know what else to do. I was her fourth daughter and she simply didn't know how to raise me differently. If you're a mother of a daughter or son with Poland Syndrome here are some things that I wish my Mother did differently to help me.

I Wish My Mother Helped Me Understand That it's Okay to be Different

Along with only having one breast there were other effects to Poland Syndrome. Not having a major and minor pectoral muscle on my right side also effected my arm. My right arm is slightly shorter then my left and my right hand is about 1/2 inch smaller then my left. When I realized that my hand was different I was, I must say, ecstatic. I ran to my Mother and showed her my hands gleaming saying wow look at this Mommy my hand's different. I was positively jumping with joy that I had discovered something about myself that I hadn't already known. I must of been around six.

She then sat me down and had a very serious conversation with me. She told me she hadn't told me about my hand and arm because she didn't want me to feel different. I told her I already knew I was different I only had one breast, it was pretty obvious to me. This new find was something cool to me, something I could show off to my friends. She then shrugged it off and told me that it wasn't a big deal and to not show anyone. Although she was trying to protect me and didn't want me to get hurt this caused a lot more pain in the long run. Instead of being instilled with a sense of pride and joy in being different. I was taught to hide myself away. So when someone found out I had one breast and was mean about it, I was ashamed. I wish I would have been like "Oh so what I'm just like you, who cares?" I was ashamed of my defect and it caused the pain of being bullied to be intensified even more. I just wish she was excited as I was and told me that I was beautiful and that it wasn't just okay to be different, but better.

I Wish My Mother Hadn't Told Me That Everything Was Going to be Okay

Whenever something bad happened my mother would always sit me down comfort me and tell me "Everything's going to be alright." But it wasn't alright. Not then and not in the future. I wish instead of my mother telling me "Just keep being friends and they'll get used to you and won't tease you anymore." That she would have said "Things will be hard, you have a rough path ahead of you, some people won't understand and will be mean, but forget about them because they're not your true friends. If you're strong and wait for friends that truly love you for who you are you'll be happy." But she didn't. I wish she had prepared me for harder times. Told me that bad stuff would happen but that I would push through and that she would always be there to help me.

I Wish My Mother Taught Me to be Stronger and Stand Up For Myself

When my mother, like above, inadvertently taught me to be ashamed of my defect. It became instilled in me. But whenever I would try and toughen up and stand my ground, I was ultimately scolded. Okay I was a little hot head and had a temper. So I'm sure she was trying to teach me manners. But what this all boiled down to is that I was taught to fit in, fit in, fit in. If ever I thought that people or kids were treating me like I wasn't fitting in I would become angry. I would tell people what was really on my mind if they were mean to me. What happened? I got in trouble. Soon I found that speaking up for myself wasn't worth it so whenever my friends or anyone else would put me down. I would just take it, thinking this is what I'm supposed to do, right? Fit in? Not make a scene. Let me just say I was a miserable little kid. I wish she had taught me that if someone wronged me that it was okay to stand up and call them out on it. I wish that she had taught me that it was okay to be strong. Instead all I got was fit in, fit in, fit in.

I Wish That My Mother Taught Me to Accept Other People That Were Different

When it came to other people that were different, whether they were from a different country, different religion or had a disability, it made my mother nervous. Whenever I would ask questions about someone that looked different she would quickly shush me and scurry away with me in tow. Perhaps this is the reason why she acted like she did around me, my defect made her nervous. If ever I would approach someone in a wheel chair and start talking to them she would quickly pull me away apologizing profusely and scolding me. What did this teach me? People that were different were, kind of bad. People from other countries were always "dangerous" and so were their countries, people of different religions were sinful and people with disabilities were weird. This was a hard thought to grow up with being different myself. It felt just wrong.

When I was a tween my mom and I were watching a TV show CSI. There was a case they were investigating of a man that was murdered that had a strange disease. This disease made his hair grow really fast and had a lot of it covering his body. It turns out his fiance's brother murdered him because he didn't want him marrying his sister. I commented about how sad and horrible it was that the murderer couldn't accept the disabled man for who he was. What did my mother say? "I can't blame him." I looked at her with my mouth open in shock. How could she say that? I said "Why?" She said "I wouldn't want any of my daughters to marry a man like that, then all my grand babies could have that condition?!" I was SO angry! How could she say something like that. I stood up in a fury "How could you expect me to judge someone based off of their disability? When you wouldn't want them to judge me based off of mine!" I stormed out of the room and left my mother with her mouth hanging open. This just showed me how much my mom hated anything and anybody that was different. It was a hard time for me. I wish she had showed kindness and understanding to all people, so that I would have felt more accepted by her.

I Wish My Mother Had Helped Me Find True Friends

I had a rough time with friends. I didn't have any true friends and the friends that I did have were always mean to me. I would tell my mom, but she would insist that everything would be okay and that they just needed to know me better. So she would set up play dates, sleep overs, birthday parties. All with my fake friends. I was miserable, I knew they didn't like me. I didn't want to be friends with them as much as they wanted to be friends with me. But my mother insisted that I should make friends, hang out with kids more often.

I once had a girl in my kindergarten class wave at me. I was excited that I knew someone, I waved back. She then came over to tell me that she wasn't waving at me but the girl behind me. "Why would I wave at you?" What happened when I told my mom? Everything will be okay and she set up a sleep over over at this girls house. Just me and her. I was miserable. I wish my mom taught me it was okay to not be friends with someone, even if it meant not having friends at all. It would have saved me so much heart ache if I could have just been alone and discovered what it was to be me. Instead of being forced to be friends with girls that bullied me.

I Wish My Mother Helped Me More with My Self Esteem and That It Was Okay To Be Confident About My Body

Ever since I could remember my mother was always hiding my body way. I couldn't wear tank tops because it might shift and people could see I was different. I couldn't wear the cute swim suits because people might see that I was different. This became especially hard once I hit puberty, but that's something that should be discussed all on it's own. What this taught me is that I always needed to be covered up because someone might find out. But it wasn't just about my defect. Not to me it wasn't. Very quickly I became not only ashamed of my defect, but of my female body. I wish I was taught sooner to be confident about my body with my defect. I wish I was taught that I was beautiful NO MATTER WHAT. I mean my parents told me I was beautiful all the time. But they would never tell me that I was beautiful with my defect, heck I was beautiful BECAUSE of my defect.

This caused a lot of mixed and unstable feelings not only towards my body but towards my sexuality. It was especially difficult when I started to date. All of these feelings were really hard to get over. If I couldn't accept myself and think I was beautiful, then what guy would? I wish my mother didn't make me feel bad about my body. I guess what this all comes down to is. I wish I didn't grow up thinking that my body was bad, ugly or different. I wish I grew up thinking that I was the most beautiful girl in the world. To look at myself and know that I was different but accept it as the norm for me. All of those other people were boring normal, but me, I was special.

Although I had hard times with my mom growing up we're better now. She told me later in life that if she had had Poland Syndrome that it would have broken her. She was approaching my situation like she would with herself. But she forgot that I was and am nothing like her. I still struggle with our relationship but she still comes over for dinner and babysits my kids. If you're a mom that has a child with Poland Syndrome, please try and learn from my experience. If you're a parent with Poland Syndrome I hope that you can raise your kids to be the best that they can be. 

I hope that someone that has been touched by Poland Syndrome is reading and hope that other's are touched as well and are learning. If anything I hope you learned how everything you do effects your children. If you have Poland Syndrome or any other defect what are some things that you wish your parents did differently or that your parents did to help you cope with your disability?

Until next time...

You're Perfect just the way you are,
No one's as Special as you.

Monday, March 4, 2013

Poland and Perfection

A life time of hope, hurt and love has brought me to this point. A point of reflection and sharing. A point of changing, turning and yearning. How life still surprises me. Honestly, I can't help but be shocked that I'm writing this all down; confessing my feelings, experiences and life to anyone who can read. However, recent events in my life has brought me to a state of, well anger and frustration. Things should be better. I want to try and change things that are wrong in the world.

If you've read this far, you're still interested and you're probably wondering what the hell is she talking about. Well, Poland Syndrome, ever heard of it? Honesty I can't blame you if you haven't. Know why? Because there is no special doctor for it and every doctor I've ever told about it, has to look it up in a dictionary. Is this a disease? No. Is it life threatening? No. Is it heartbreaking? It most certainly can be.

Poland's syndrome is a birth defect. A fairly slight one that effects a very small amount of people, most of them being males. So not only do I have a crazy rare birth defect, but I also have a birth defect that rarely effects females. Yay for me, I'm a rarity. So, what is it exactly? When I was still inside my mother's womb a part of my body failed to develop; although if you were to ever meet me in person you probably wouldn't notice. My right major and minor pectoral muscles failed to develop like normal. This left my body with a small dent where my right breast was supposed to be.

That's right. Ever heard of breast cancer? Women having to go through surgery and remove their breast or sometimes breasts. Well, I've only had one breast my entire life. I mean women who go through breast cancer and have to lose a breast, it's sad and this is in no way saying what they went through wasn't horrible and emotionally trialing. But all of the emotions that come with breast cancer; I experienced every day of my entire life.

Growing up being a little girl and knowing your different was one thing, but being treated like you were different was another. At some point you stop caring and start carrying a thick skin wherever you go. You might be able to tell yourself that peoples snide comments don't matter and you don't care what they think. But I did, I really did. I never truly became free of it all until I made peace with myself, but that did not happen until a very long time down the road.

We live in a society that sexualizes the female body for multiple reasons, some being just to sell a product. I feel pressure still, with everything around you telling you your body's not thin enough, your face isn't clear enough, you're breasts aren't big enough, you're outfits not skimpy enough, you're not having sex early enough. Imagine how this all is for a little girl, especially a girl with only one breast? Sometimes it makes me sick. I wonder sometimes how I survived it all. Then I remember it was because I was strong. Me.

I know that there are other's out there like me. I know that you've struggled and have spent time hiding like me. But I don't want to any more. I have never met a woman that I knew to have Poland Syndrome. I so wish I have. Perhaps this is another reason I'm writing this all down. I'm reaching out to a younger me to tell her everything's going to be alright. It took me a very long to come to that realization and I'm writing this to maybe, hopefully help you realize too.

You're Perfect just the way you are,
No one's as Special as you.