Sociopaths: A Lost Conscience

The Road to Hell was paved with their Ugly Intentions

Advertisements

You know these people. They look just like we do. They eat the same foods we eat, wear the same apparels we wear, and sleep under the same sky we sleep under—you could even be sleeping next to one of these hell-raisers and not even know it. You’ve seen these individuals in action, working their wicked, magnetic brand of charm and humor. They function mainly unobserved —until they don’t, at which point it’s probably too late because they’ve already claimed your trust and livelihood. We’re talking about sociopaths, those human beings who move through life controlling you through their manipulation and deceitfulness.

image

Perhaps you’re wondering how to prevent yourself from falling prey to the dangerous games sociopaths play. Not all sociopaths are serial killers roaming the streets in search of their next victim. They’re actually more common than you may think. It’s been suggested that one in 25 people are sociopaths. A high-functioning sociopath could be spreading mayhem and misery in your life disguised as a parent, child, partner, family, friend, or coworker. I have some crazy personal stories to share but we’ll get to that a little later in this blog.

Sociopaths fear two things: (1) Losing control. (2) Being Exposed.

First, let’s talk about when it usually all begins – Childhood. If the sociopath is a child or teenager the signs are more difficult to recognize because it’s not ‘all or none’ when it comes to them. Most young people who demonstrate sociopathy tendencies can at times be considerate, caring, and sensible. However, many display a lack of concern for the rights and feelings of others and are inconsistent in their behavioral patterns. It’s confusing for parents because often times their children will display a mix of strengths and weaknesses like every other child.

SOCIOPATHY SIGNS IN CHILDREN:

sociopath

  1. Indifference to consequences

One of the revealing signs of sociopathy, Psychology Today says, is an indifference to looming consequences. Sociopaths do not fully grasp the potential consequences of their risk-taking. A sociopath doesn’t register consequences as a negative effect, which could lead to poor choices with potentially grim results.

  1. Lack of empathy

Children with sociopath tendencies have an Inability to feel empathy for others or to understand the emotional consequences of their actions. There’s little compassion or sense of loyalty to others, particularly their siblings or friends.

  1. Frequent Lying without guilt

It’s not the lying itself that may raise early suspicion of sociopathy; it’s the fact a child can do so without considering ramifications. Most kids will look guilty when caught in an ugly lie, because they know it’s something they shouldn’t be doing and their parents won’t be happy with them. Kids with sociopathic tendencies, though, are unremorseful.

SOCIOPATHY IN TEENS:

AAEAAQAAAAAAAAXIAAAAJGVjZWUxMWEyLWI0MmEtNDMzZi05NjYyLTEzN2MxMTFkMzVmOQ

According to Psychology Today, the hallmark of teen (male and female) sociopathy is the inability to maintain close and consistently harmonious relationships and to feel accountable and remorseful when he/she does something that hurts another’s feelings.  This chronic disorder can be a result of interactions between genetics and environment, according to Mayo Clinic. Sociopathy cannot be officially diagnosed until a teenager has reached the age of 18, according to the American Academy of Pediatrics, but the indications are typically present before the age of 15.

The biggest sign of sociopathy in teens is a lack of empathy. Other symptoms include persistent lying, manipulating others with charm for personal gain or desire, irritability, impulsiveness, promiscuity, and possibly aggression. A sociopath typically shows no remorse for hurting other people, even those they claim to love. They may suffer from periods of depression and anxiety and problems in school. Sociopath teens often have relationship difficulties, both within their families and with friends.

According to Psych Central, lying behaviors in teens may include lying about others (even their parents), or changing bits and pieces of a story to make part of it true and the other part a lie. Also, teens who calculate and manipulate in order to harm others are often the most frightening. Why? Because they are cloaked with the innocence of their youth and are often given the benefit of the doubt by adults. Who would want to see their own child or adolescent as one with evil intent?

narcissistic-sociopath-relationships

SOCIOPATHY IN ADULTS:

THE MOTHERSHIP HAS LANDED. Don’t walk. RUN! Nothing good can come from having a seasoned sociopath in your life, and especially not a romantic relationship. They con their victims into believing they’re kindhearted and have their loved one’s best interest at heart but they are only exemplifying a front. Whoever they are trying to portray doesn’t actually exist.

Deep down, these people are cold-hearted, and they completely lack the full range of human emotion. The only person they care about is themselves. People in their lives are seen as possible targets for their own self-centered, deviant needs.

86f2af11641603537b228afc5b815aa3

I married a sociopath but I didn’t recognize the signs until it was too late. He won me over with his good looks, witty charm and sense of humor. Little did I know I was being swept under the influence of a charismatic nut-job. He had mastered the “mind-f**k” game and enjoyed every minute of it. He tried making ME believe I was the insane one. I remember thinking, “Am I crazy? And how would I know if I’m crazy because do crazy people actually KNOW they’re crazy?” As wacky as that statement may sound, that is how a sociopath manipulates their partner’s mind. My ex was verbally, emotionally, and physically abusive, and he put on a total façade to the public. We went away for a long weekend once and upon arriving at the hotel the clerk greeted us a “Dr. and Mrs. _____.” Baffled but humored, I chuckled about it with my husband as we entered the elevator assuming she had mixed us up with another couple. After all, he was an engineer and nowhere involved in the medical profession. Ummm, no. My ex had actually booked our hotel stay as “Dr. and Mrs. _____.” He thought it’d be funny. Who does that??

scottme

No matter how deteriorated my life had become with my ex, I always hid my pain well by keeping a smile on my face.  I was too humiliated to let others know the pain I was feeling, and too afraid to walk away.  Few people knew the horrifying details of my relationship, and the ‘secrets’ of the dark soul I had married.

He lied about his debt, career history, and why previous relationships had ended. He claimed to have a Bachelor’s degree but he didn’t. No employer asked for proof so he just never got caught. One company fired him yet he pretended to still be employed by getting up and ready for work every morning. He left our home before me and returned after I got home from work, still dressed in his business attire. It was all an act. He had actually been unemployed for three weeks before I found out. I had called his office phone vice his cell and a coworker answered.

He used to log into online chat rooms just to cause turmoil with random people. He’d ‘private message’ total strangers telling them lies about their partners because he thought it was funny. A con-artist, he thrived on the chaos and the gloom of others.

I had no idea how he was able to get under my skin like a flesh eating bacteria and stir up so much damage in my life in such a short amount of time. Fear prevented me from leaving sooner but finally after four years of pure hell, I left him. Rock bottom literally became the solid foundation on which I rebuilt my life. It’s better to have loved and lost than to spend the rest of your life with a sociopath, believe me.

To read my blog about my abusive marriage to a high-functioning sociopath, click here:

I Married A Complete Stranger

FEMALES OF ALL AGES CAN BE SOCIOPATHS.

Females fall under the same warning signs as males but with an added twist.

(As described on website softpanorama.org) Dr. Martha Stout, in her book ‘The Sociopath Next Door’, discusses the techniques of the sociopath — what she refers to as ‘the tools of the trade’. Among the most typical we can mention the following:

female-sociopath

  • Charming the victim. Dr. Stout believes it is a primary characteristic of a woman sociopath. Truly talented ones have polished their ability to charm people into an art, priding themselves on their ability to present a fictional self to others that is convincing, taken at face value, and difficult to penetrate. One must always keep in mind that the charm, like manipulation in general, can be very subtle.
    • Provocative (or seductive) behavior; early and repeated attempts to breach the personal distance while not being acquainted for a long time.
    • Attention-seeking behavior, especially efficient when it comes along with physical beauty. Physical beauty is the trait that makes female sociopaths so dangerous, as it disarms people.
    • Influence others and adapts to them seamlessly.
    • Make-up, hair style, clothing, perfume, the whole physical appearance are well thought out.
    • Exaggerated emotions; theatrical behaviors.

thumbnail_558bf30b31e4910ce7d7411be18a4148

  • Gaslighting. A common practice of abusers who attempt to convince their victims they are defective for any reason such as making the victim more emotional, more needy or dependent. For example, if an abusive person says hurtful things to you to cause your distress and then tries to convince you that you are mentally unstable and starts recommending that you get professional help, you might be in the presence of a gaslighter. 
  • Projection. Sociopaths refuse to be held accountable for their behavior.
  • The pity play. It’s okay to pity someone who has gone through difficult times, but if you find yourself feeling sorry for someone’s sad story, make sure the story is true. The pity play should be a warning sign to all of us as this is a very typical tool for female sociopaths.

c9ea9545260f3b0c383e06884546420d

  • The entrapment of the victim. Often the entrapment of the victim goes in several, overlapping phases:
    • Assessment. During the assessment phase, the sociopath is able to determine a potential victim’s weak points
    • Manipulation. Once the sociopath has identified weaknesses of the victim, the manipulation phase begins. During this phase, a sociopath may create a persona or mask. A sociopath’s lack of empathy and guilt allows them to lie with ease. They are usually compulsive liars, actors who all their life are wearing some kind of fake personality.
    • Seduction. They use the same techniques as male sexual predators trying to condition the victim by shaking their moral norms and convictions.
    • Blaming the victim. They never accept responsibility for anything bad that happened. It is always somebody else’s fault.
    • Constant lying and perfect mimicry to the expectation of the victim.  Female sociopaths lie and wear a fake persona to gain the trust of their victim.  They are usually compulsive liars and perfect cheaters.

sociopath

QUICK CHECKLIST: Know Some of the Big Signs

  1. Superficial Charm

Sociopaths often appear to be very charming on the surface in order to create a facade. They are very aware of the effect their charm or wit may have on others, as their pretense of likability allows them easily gain people’s trust.

  1. Narcissistic

Sociopaths are extremely egocentric, believing that they’re always right and that everyone should agree with their actions and opinions.

  1. Pathological Lying

Sociopaths have no problem lying easily and it is almost impossible for them to be truthful on a steady basis. They’ll lie, and lie, and lie some more in order to create a false façade. Lying comes naturally to them, because they aim to hide their true motives.

54017f83180f124c393971df916789e6--narcissistic-traits-psychopath

  1. Manipulative and Cunning

Sociopaths never recognize the rights of others and see their self-serving behaviors as acceptable. They appear to be charming. Don’t be fooled.

  1. Shallow Emotions

Sociopaths do not genuinely feel emotions. When they show what seems to be warmth, joy, love and compassion it is artificial and serves an ulterior motive. They’re unmoved and cold by what would upset a normal person.

  1. Lack of Remorse, Shame, or Guilt

Sociopaths are infamous for being devoid of these three emotions. They do not feel bad about their actions, even if these actions hurt others.

  1. Incapable Of Human Attachment

Sociopaths are unable to form genuine relationships with others. They will usually struggle to make friends or maintain romantic relationships.

118b9d525602276bccfd8c9933e7dd06

  1. Constant Need for Stimulation

Sociopaths suffer from boredom easily, and they need constant stimulation in their lives. This desire is related to their natural need for self-gratification. Their need for stimulation can cause to them to take needless risks that put themselves and others in unsafe situations. Promiscuity and gambling are common.

  1. Lack of Empathy

They are incapable of empathizing with others. For example, if someone told you a depressing story about a family member dying, you would feel sympathetic to their grief and pain. A sociopath, on the other hand, would feel nothing. In fact, lack of empathy shown by children could be an indicator of their later onset of sociopathy.

  1. Poor Self Control / Impulsive Nature

Sociopaths will exhibit very short tempers, as well as hostility, irritability, and aggression. They’ll act on their impulses without thinking or caring about any potential consequences. They may behave violently or impulsively, and also may have problems with drug and alcohol use. These characteristics typically make people with antisocial personality disorder unable to fulfill responsibilities related to family, work or school.

th39G4T2SG

  1. Promiscuous Sexual Behavior / Disloyalty

Sociopaths are likely to be unfaithful and promiscuous, which is connected to their tendency to get bored easily. As mentioned earlier, they need continuous stimulation.

  1. Irresponsibility/Unreliability

Sociopaths aren’t bothered by wrecking others’ lives and dreams. They’re unaware or unconcerned to the devastation they cause. They don’t accept blame on themselves, but blames others, even for acts they’re obviously responsible for.

Differences between Sociopaths and Psychopaths

There is little agreed difference between sociopathy and psychopathy, but some psychologists agree that psychopaths are more calculating and measured in their actions. The psychopath will be more likely to construct a complex scheme or plan and to carry it out, whereas the sociopath is more driven by impulsivity. This makes the psychopath more likely to commit crimes and generally the term psychopath is used more generally to describe the criminally insane rather than just the lack of empathy.

Can A Sociopath be Cured?

It’s complicated due to the variety of ways in which the disorder exhibits in each person afflicted with it.

“Though antisocial personality disorder is difficult to treat, for some people, treatment and close follow-up over the long term may be beneficial,’’ according to the Mayo Clinic. “Look for medical and mental health professionals with experience in treating antisocial personality disorder.”

TAKE THE SOCIOPATH QUIZ! (Click link below)

Are You A Sociopath Quiz

 

Life Was ‘Rich’ When I Was Poor

Growing up as an 80’s kid

The most interesting thing about growing up poor is that I didn’t realize I was poor. As long as I had food in my belly and a place to sleep, life was good.

I loved my childhood. My mother was a waitress and my father was a car mechanic. I don’t have many childhood memories of my father because my parents separated when I was five years old. We moved from a trailer in the hood (although I had many tricycles as you can see), to another trailer located in Hollywood, Maryland with my to-be step-dad.

19172_1239624303691_4148427_n

My step-dad worked in Washington, DC, near the Capitol so he was a bit of a celebrity in my eyes. I had only visited DC once on a school fieldtrip. My friends used to ask me: “Hey, where does your step-dad work?” I’d respond: “He works in Capitol Hill with very important people.” I felt good about my standard response but I’m sure it confused many kids considering we lived in an unflattering trailer. I laugh when I think about that now. My step-dad looked more like a Bounty Hunter than a Capitol Hill employee. Imagine: A trailer in a lonesome field, a big guy living in it who could kick your ass, a German shepherd named “Axel,” and a few beaten down vehicles. Oh yeah, baby.

The trailer was tiny – brown and off-white in color. It wasn’t pretty, certainly nothing to brag about but it was “home.” My bedroom was like a human sweat locker, just big enough to squeeze in a single sized bed and a tiny dresser. Dark brown paneling surrounded me. Didn’t everyone have paneling in the early 80’s? It was hideous yet nothing made me happier than being with my family. I especially adored my little brother, Michael. We didn’t have much but we had love and togetherness. Today, lots of families live in huge homes even though most only use a handful of the rooms. Why do people need all this space?

No one complained there wasn’t central air conditioning or a dishwasher. Nobody whined that there was only one TV console with no remote control. Funny thing is I don’t know how I’d survive today without a remote control. If my remote died in the middle of the day, I’d rather run out to Walmart for new batteries than get up and change the channels.

6d1c2173c823c87a21e5c9fd759de8c0.jpg

Who remembers the TV Guide? It was awesome. I used to sit down and circle every show or movie I wanted to watch. If I missed the opportunity to see a good movie, I might not see it again for another year. That ain’t no joke.

478161cd0cdb8ee888597e16f8bff43b2f69eab0

The Wizard of Oz always left me in “awe.” I didn’t believe dwarves (or little people) were individuals I’d ever see in real life. After all, I did live in a small town. As a kid I felt amazed that TV producers found so many of them for one movie. Am I the only person who thought this way?  🙂 Now, there’s several reality shows starring little people and I love it.  I’m a fan of Little Women LA and The Little Couple.

oz

Another thing I find thought-provoking is that I didn’t hear sexual or foul language on regular TV channels back then. Today, children can turn on the TV and learn more about life’s vulgarities than I knew of at 25 years old. Actors and reality stars can say “ass,” “dick,” “bitch,” and insult others because it’s considered funny to so many people. I don’t get that? Why? I guess saying “Take a step back, jerk!” isn’t as cool as saying “Take a step back, motherf**ker!” Haha.

I remember the enthusiasm I felt when the fat Sears catalog was delivered around Thanksgiving time. I put my marker to work circling a thousand items I wanted, knowing I’d only get a few of them. But that was okay because just the book alone made me feel happy inside. I loved looking at the many colorful pictures. Who feels that way anymore? There are no catalogs for kids any longer. Now children are on Amazon asking their parents to order them things all year long.

1555426_10201937969983824_116912945_n

School days taught me a lot about different cultures. My most influential educator was my 5th Grade Teacher, Ms. Betty Brady. She went above and beyond the typical 5th grade education. She actually cultivated us about life. We wrote poetry and talked about our feelings. We took picnic lunches in the woods, sat in a circle and named positive things we liked about each other. Another cool thing we did was write down our name/address on a piece of paper of which we attached to a balloon. All at once, we released our balloons into the sky hoping someone far away would receive it and become a “pen pal.” A few kids were lucky and it worked! Can anyone imagine doing this now? That’d be like giving a possible child molester your full name and location.

be6fe5ac6100c46b26586d94f5d1b0a9

Hollywood, Maryland was so small that we only had one African American in our class. His name was Jermaine and he was super cool and friendly. I didn’t understand until I was older that racism is something that’s taught by adults to children. It doesn’t naturally exist on its own. We also had one disabled boy in our class. His name was William. I don’t know what condition he had but he wore a sturdy back-brace daily and struggled to walk sometimes. My classmates were helpful and kind to everyone. No one was cruel or obnoxious acting.

10398505_1055086450360_7893236_n

I didn’t have a miraculous wardrobe, and I owned just a few pairs of shoes yet I felt okay with that. None of my buddies made me feel inadequate over it. I’m not sure the same applies in today’s world.

Our elementary school had a special program called “Grand Pals.” It was an incredible experience. Each 5th grader “adopted” two elderly persons living in our local nursing home. Our grand-pals were chosen by drawing names out of a jar. Although I don’t recall their names, I vividly remember who my grand-pals were. One was a blind black man and the other was a disabled veteran (both legs amputated at the knee) who carved wooden ducks as a hobby. I was fascinated by both of these gentlemen. They were so welcoming and kind to me. They shared stories about their lives with me and my letters were posted on their bedroom walls. Those two men will never know how much their wisdom and friendship meant to me. How many elementary kids in this generation can say they’ve had this type of experience?

When I had a school assignment I turned to the Britannica Encyclopedia set in our home. Those books were amazing, filled with color portraits and easy to understand. My parents took out a small loan to buy them. Now, schools basically require you have a computer/Internet at home to research projects and essays. Oh, and a printer.

s-l640

In middle and high school, a fight was just that… a fight. A kid worked off his or her aggression, spoke to the assistant principle, then went home for a few days. Today, most schools have cops permanently located within the school “for your safety.” Now a child could be smeared with a criminal record if he/she gets into a fight. Did bullying become worse or was it there yet ignored because social media didn’t exist?

I wrote letters to friends and boyfriends in school. In class or in the hallway, I passed my note to my recipient with a big smile upon my face. Also, back then people wrote addresses down in an actual address book. What have we gained since social media and email began? Swiftness of communication. And for this generation, speed is everything. What have we lost? Closeness, voice contact, the intimate communication of actually knowing what a person is feeling, and that can only come from presence. I don’t know any families that are actually closer as a result of email or social media.

d3eb4e94a055eb97b9d9f88dab1e0d2b

I remember the enjoyment I felt when my favorite song played on the radio. I owned a stack of 45-records and a few albums.  Then cassette tapes came out.  Major improvement! I discovered new music at a local record store called “Can’t Stop the Music.” I eagerly awaited the release of new albums. There were no piracy issues because people were allowed to record songs straight from the radio.  Imagine that!  Who else thought it was incredibly annoying to play their favorite song on their cassette tape? Fast forward. Stop. Play. Rewind. Fast forward. Stop. Play. God forbid you tried this out with your “Walkman.” It was ridiculous. Now a person can just turn on their iPod and hear their favorite tunes whenever they want. The “thrill” is over.

b1b3a067108bce9289bbbc373bafaaef

House phones: I’m reminded of when “call waiting” first emerged. My friends and I were so excited! I told my girlfriend, Sheri: “Okay, call me at exactly 6 p.m.” Then, I’d have my boyfriend call me at 6:05 p.m. just so I could hear the BEEP and try it out. Mission achieved.

If I met someone I wanted to talk to, we exchanged home phone numbers on a piece of paper. If paper wasn’t available I wrote their number down on the back of my hand. If I wanted to ask a guy out, I didn’t start communicating via texting or IM’ing. I called his house. ‘Ring-ring…riiing-riiing…riiinnngggg-riiiinnnngggg’ (Please don’t let it be his mom or dad who picks up the phone… please don’t let it be his mom or dad who picks up the phone…) Then I’d talk to that boy for HOURS on the phone. Time just flew by. What the hell did we actually talk about? Who knows…

80s-clear-phone

I kept my sanity after breakups because back then there was no way to keep tab on your exes. Then the Internet came. Yikes! “Oh no, girllll… He was tagged in a picture where he’s hanging all over some chick. You gotta see this.”

A 35mm camera was the happening thing but if you were poor, Fujifilm invented the modern disposable camera. When I wanted my film developed, I had to take it to a store, drop it off and wait a few days. There were no do-overs. I photographed what I photographed. If I didn’t like the picture and wanted to redo it, too bad. The moment was gone. It’s printed now. If my eyes were closed, my hair was a mess, I had red-eye… oh well. Now, a smartphone takes better pictures than some digital cameras on the market. Constant do-overs make people appear flawless and it takes away the humor of an ugly photograph.

d8f934b0d7daf22d1ba1d66395d37b34

Renting a movie was an adventure! I strutted around the movie store looking at all of the boxes of beta/VHS tapes available. I read the covers from front-to-back and glanced at the actors’ fashion statements. I dreamt of becoming a beautiful woman like the many featured on the movie covers. Who remembers “Be Kind. Rewind.”? Haha. A person had to rewind their tape or else the rental store charged a fee. I was sneaky too because I used to wander into the X-Rated room in the back to check out the naughty porn collection. That is how I learned about porn as a kid since there was no internet at our disposal. It scares me that a kid can easily access a porn site without their parents knowing.

d37f0f87d2fb86f2187c6a91a1b231bd

If I wanted to play a video game I went to the arcade armed with pockets full of quarters. I stood at a big boxy thing squeezed in next to a lot of other big boxy things, put in quarters and played the hell out of the games. And then I went home happier and poorer. Now there’s X-Box, PlayStation, games on our phones… you name it… endless entertainment available right at your fingertips.

galaga-reunion-street

I spent my free time outdoors. Nature was my life. As kids, my aunt, Kristi, and I loved playing on the old railroad tracks behind her house. We caught tadpoles and held them in our hands without thinking “ewww….. gross.” I’ll admit I was afraid to hold a frog in my hand because I was told it would give me warts. I must have some kind of wart-fighting-power because I never did get any warts.

We rode in the back of my step-dad’s pick-up truck. There were endless bicycle journeys; Kickball; Tag; Candy cigarettes; Mello Yellow; Starburst; Scraping change from the couch cushions; fruit flavored Chapstick. We used make forts in hollowed bushes and re-hammer rusty nails into makeshift signs or we made mini sailing vessels with old pieces of wood. We flooded the narrow hillside of my yard using a garden hose and like magic, a “flowing river” appeared for my sailing vessel. Speaking of garden hose, I used to drink water straight from it without hesitation. Now, I’d probably need an immunization shot before pulling such a stunt. I was easily amused with a dirt driveway and a few small rocks to carve out Hopscotch blocks.

6d1dd98efe9c5ac5c1c0ca3c4a5dc4bd

On pretty days, we’d try to catch butterflies. This is totally unrelated, but I have a confession. I’m 42 years old yet I’m still haunted by an act of violence I committed once on a butterfly. I saw a wounded butterfly on the ground and instead of putting it out of its misery I took one wing and ripped it off. I have never forgotten that horrible act, as if it were some Jeffrey Dahmer shit or something. I have no idea why I did it. “I’m sorry, Mr. Butterfly. Please forgive me.”  😦

In the evenings, my grandmother gave us old mason jars and we’d run out in the front yard trapping lightning bugs. We poked holes in the metal lids and kept them overnight. I loved how they lit up the room at night. Some of the breathing holes weren’t big enough so many of my lightning bugs suffocated and died as a result.

Come to think of it, I’m starting to feel like a bug murderer… WTH.

Honeysuckle bushes lined the right side of my grandparent’s yard and we picked many of them for a taste of sweetness. Raspberry bushes were located in the woods right beside my house. Kristi and I picked huge bowls of them. It took hours and the chiggers we were totally worth it because the berries were free and delicious in exchange for the labor.

CHIa0OCWMAA_pOB

I roamed the back streets throughout my neighborhood until sunset without concern from my parents. I wore a watch, the only way to tell time – A Swatch Watch.  Now, if a person doesn’t know where their kid is at all times, there is possible cause for panic — and a call to 911 may be in order.

We used yarn for ‘string art’ – ‘Witch’s Broom’ or ‘Cat’s Whiskers’.  Endlessly, we tried to come up with new string tricks.

maxresdefault

I had multiple bundles of colored string of which was used to make friendship bracelets. I pinned the knotted end to a pillow and then braided until it was long enough to fit my wrist.  I loved seeing the final outcome.

braided-friendship-bracelets-banner-600-3-441x441

Kristi and I choreographed dance acts to our favorite songs and performed our synced moves in front of our family in the living room. We looked ridiculous but it was fun and it killed time.

Often times, my grandparents took Kristi and I to the flea market and we loved it!  We frequently came home with multicolored rabbit foot key chains. I wouldn’t want one of those now – how depressing… “Let me cut off an innocent rabbit’s foot and color the fur. Children will love this.” Hell, I’d have PETA beating down my door today for owning such a trinket.

untitled

Yard sales were fun. My mom and I used to hit up every yard sale in town. I’d always come home with a cute top or VHS movie. I wasn’t embarrassed to wear hand-me-downs. Before we left our house, we used to scrape up change from all around the house to treat ourselves to McDonald’s after yardsaling.

My parents used a map to go somewhere… Yes, it’s called a map. Crazy, isn’t it? I bet if I handed my adult son a map today he’d have no clue what to do with it. I recently watched an episode of 20/20 where a college student decided to spend her Spring Break on a solo road trip. She followed her Yahoo Maps app all the way to a dead end dirt road in the blistering desert. She was stuck there for nearly a week without gas or cell phone reception before someone finally found her.  She could have died.  Why aren’t we using maps as backup to GPS?

When I started working at my first job I had to either balance my checkbook or visit the bank to know how much money was left in my account. Pretty wild, isn’t it?

I had to teach my adult child how to write a personal check just last year:

Matt: “Mom, how do I write out a check for the security deposit on my apartment?”

Me: “You fill out who it’s going to, the dollar amount, and write the cash line out as (ex.) “One Thousand two hundred twenty-five dollars and xx/100. Date it. Sign it.”

Matt: “What? I don’t understand.”

Me: “Re-read what I last texted.”

Matt: “Can you just send me a picture of a voided check and pretend you’re writing this out so I can see?”

Me: {Laughing out loud} “Sure.”

If I left my house I didn’t care if someone couldn’t reach me. If I needed to reach out I used a pay phone booth. They were gross but it got the job done.

OLYMPUS DIGITAL CAMERA

Nearly everything I did in my childhood for entertainment was cheap or free. That’s the intriguing part. What kid can say that now?

Killing time never involved me texting, taking a selfie, scrolling through Facebook, Instagram, Snap Chat, or Twitter… seeing how many “likes” I had… Instead I took time to think… really “think.” Boredom made room for me to reconnect with myself.

Did technology take over? The Internet came with a lot of knowledge but it also filled our heads with plenty of junk and fluff like YouTube, endless porn, social media, and crimes. It gives people an excuse to stop speaking to others in person. It provides individuals with online bravery to insult or bully other people.

Life seemed simpler and healthier to live with less communication technology than we have today. Most would agree that it creates a sense of dependence that we did not used to have, not only in the form of separation anxiety from the people in our lives, but also from the separation anxiety we have developed for information and technology itself.

0ebdfe303259b12262d7ea61018d57fd

23368b1914e499efc5a1c79da6e1daa1

 

Pediatric Cancer: Take a Stand

Our children deserve better than 4%

One child… One moment… One word…

A powerful ‘word’ that will break hearts and send thousands of children to heaven

“CANCER”

fb_img_1486146082086

I met Nolan Scully only once at a fundraising benefit held in his honor. I had been following his Facebook page (NolanStrong) and I knew he had a rare cancer, Rhabdomyosarcoma (RMS). Like a superhero, he flew across the huge room (or shall I say ‘ran’ with a cape on), headed toward my direction. With his black satin cape flowing in the breeze behind him, he suddenly stopped to say ‘hi’ and pose for a few pictures. It was a quick greeting, muffled through the protective mask he was wearing to keep bad germs away. But that mask couldn’t hide the huge smile Nolan had upon his face. His crescent-moon shaped eyes squinted with joy as he paused to admire all of the attention. By that time, a mini-paparazzi crew, with myself included, were all on bended knee wanting to snap a picture of this courageous, fun-loving little guy.

20170203101948

I instantly fell in love with Nolan. I looked forward to every post his mother, Ruth, put on Facebook. “Oh, look. There’s a new post about Nolan. Let me go read that before I do anything else,” was my typical feeling toward my Facebook newsfeed. That’s a powerful punch considering I had only met Nolan once for a few minutes. I was amazed by his fighter mentality, his charm, and his bubbly, positive attitude. It was clear to me that he loved to laugh.

Like many, I wanted to do everything I could to help Nolan fight this fight. Most of us could never imagine, or possibly understand, the devastation a child with cancer and their family will go through. Pediatric cancer is so much more than a St. Jude’s commercial we all look away from because “we’d rather not cry today.” Let’s stop looking away and start trying to make a difference.

14632879_10206637886660672_6426613910884672893_n

Although Ruth highlighted many treasured, beautiful moments shared with Nolan, darkness always lurked behind the scenes. Ruth braved sharing the ugly truth about pediatric cancer:

  • Doctors take an educated guess at how much chemo to administer
  • Parents lose their own identities because healing their sick child is #1 until the fight is over
  • Countless surgeries
  • Fevers, Diapers, Weight loss, Diarrhea, Vomiting
  • Tubes, needles, tests, procedures, transfusions
  • Spending several months of their life in a hospital
  • Emergency room visits; doctor visits
  • Panic, fear, frustration, anxiety, anxiousness, tears, loneliness, sadness, depression, anger, devastation, helplessness
  • Salespeople trying to profit off your child’s illness: “This product could save your child’s life!”
  • Siblings suffer emotionally as they watch their brother or sister suffer and possibly die

fb_img_1486146070563

And the ugly truth of pediatric cancer goes on….

Nolan has spent more than half of his ENTIRE life fighting just to stay alive. Now he’s living out his final days under Hospice care with his loving family at his side. It’s heart shattering and I’m praying to God for a miracle.

Life can be so cruel and I cannot make sense of any child suffering. “Why?” I’ve asked myself this over and over again. As I watched this tragedy unfold from afar through social media, futility became overwhelming. I felt so useless. Then, I realized there are some things we CAN do:

Here’s why that’s so important: The vast majority of cancer research dollars go toward fighting adult diseases. Of the National Cancer Institute’s (NCI) annual $5 billion budget, only about 4% on average is spent on projects specifically targeted at combating childhood cancers, though another quarter is devoted to basic research that could theoretically help both pediatric and adult cancer patients.

In 20 years the FDA has initially approved only two drugs for any childhood cancer – ½ of all chemotherapies used for children’s cancers are over 25 years old. Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to ZERO for childhood cancers. Pharmaceutical companies don’t commit resources to childhood cancer research because the adult cancer drug industry is viewed as more profitable and less risky to them.

Does this piss you off? Because it definitely pisses me off.  There’s clearly a disproportionate focus on adult over pediatric cancer research.

NCI’s funding for pediatric clinical trials is $26.4 million while funding for AIDS research is $254 million, and breast cancer is $584 million.

untitled

According to CureSearch, each year, the parents of approximately 15,700 kids will hear the words “your child has cancer.” Across all ages, ethnic groups and socio-economics, this disease remains the number one cause of death by disease in children.

  • Every day, 46 children are diagnosed with cancer
  • 12% of children diagnosed with cancer do not survive
  • 1 in 5 children diagnosed with cancer will die within 5-years
  • More than 40,000 children undergo treatment for cancer each year
  • 60% of children who survive cancer suffer late-effects, such as infertility, heart failure and secondary cancers.

Let’s take a stand for Nolan and all of the other children battling this demon called cancer. Bombard Congress with your emails and letters. Support pediatric cancer research so that kids fighting cancer have a better survival rate.  Pray for the children suffering from pediatric cancer, and pray for their families.

❤  Nolan  ❤

A brave little superhero who wanted to dedicate his adult life to helping others.

A boy who loves emergency and first response vehicles.

A kid who loves life, people, and animals.

A kind, loving child who died from pediatric cancer on February 4, 2017.
fb_img_1473207192908

 ** TAKE A STAND AND DO SOMETHING **

1486046218081

A video of Nolan’s journey:

 

Me? I Choose Life.

Am I supposed to feel ashamed and silenced because I’m a Pro-Life Christian?  I am not ashamed.  Social media and news outlets typically only broadcast the side of a woman’s right to choose.  Yet opposing views, such as mine, are portrayed as hostile, ignorant, bible-thumping jerks.

I’m not a Pro-Life American who stands outside an abortion clinic yelling, “That’s right! You’re going to burn in hell!”  I think that type of behavior is wrong and hypocritically judgmental.  I’m not shouting out profanities at anyone who’s had an abortion or plans to have the procedure.  And I’m not aggressively and verbally pushing “Jesus” into women’s brains as if I am holier than thou and without sin.

307083_870570-20140627protesters

For me, being Pro-Life doesn’t mean that I’m against abortion for victims of molestation, rape, or younger-aged minors who are far too immature to understand the real consequences of sexual intercourse.  Perhaps this makes me altered from the whole “definition” of “Pro-Life.”  But unless “your” daughter has endured one of these life-impacting traumas, I think it’s premature to assume you’d naturally encourage her to keep the pregnancy as a parent.

story-bg

I also don’t expect a woman to endanger her own life for the sake of carrying out a high-risk pregnancy.

Being Pro-Life doesn’t mean I hate or even dislike women who DO choose abortion because I don’t.

What I can say is that if an indecisive female friend or stranger confided in me about being pregnant and scared, I would encourage her to choose Life for many reasons. Giving the gift of life is a beautiful thing.

Why are we not promoting the concept of adoption and bringing awareness to the fact that in America today, there are over 2 million couples waiting to adopt-and that includes children of all races and those with special needs? (This information from the National Council for Adoption)

adoption-quote-baby-yawning-in-arms

Life has begun from the moment of conception, and at just 22 days after conception a beating heart is present. That’s a proven fact.

thi

Although I’m opposed to abortions (apart from the conditions I mentioned earlier), I have zero tolerance for late-term abortions. At 20 weeks of pregnancy, a woman is more than halfway through her pregnancy. Although late-term abortion is illegal in most of the U.S., seven states and the District of Columbia allow abortion AT ANY POINT during a pregnancy, according to reproductive-research org the Guttmacher Institute. In the other 43 states, abortion is banned—with limited exceptions, such as for the safety of the mother (after the second trimester).

My first pregnancy occurred when I was 19 years old.  As an unwed young woman, I was petrified and clueless as to how I was going to raise a child on a $5/hour salary.  But nonetheless I considered all my options before seeing the doctor.

I felt emotional as I watched and listened to the loud, gloriously thumping sound of my baby’s heartbeat.   Although I wasn’t at peace with my situation, it was still a beautiful moment in my life.  My doctor printed out my sonogram pictures and I stared at them nonstop all the way out to my car. Instantly I felt a vibe that I was having a girl and her name would be Alexandra. I planned on calling her Alex.

Times were stressful and a lot of arguing had transpired between me and my unborn baby’s father.  He mentioned the idea of me getting an abortion.  It broke my heart. A few months into the pregnancy, devastation struck. I awoke feeling nauseous with severe cramping. I can assure you that as a pregnant woman nothing is more horrifying than the sight of blood.

My mother picked me up and we raced over to the obstetrician’s office. I cried and begged him to help me as if there was something he could do to save my little one. The sonogram showed the baby was fine and my doctor insisted I stay on bed rest for the next several weeks.  Relieved, I got up and walked down the hall to the bathroom before departing the building.

BOOM! I began hemorrhaging out of nowhere. The pain was excruciating.  The doctor ran toward me and with one glance at his face I knew …. It was over.  A D&C was scheduled, performed, and I was sent home to mourn. This is the size of the baby I lost at just 11 weeks of pregnancy.  Does this look like a “blob of cells” as the media tells us?  I think not.

12weeks

While I can’t say that I’ve been through an abortion, I can say that I know what it’s like to be young, broke, pregnant, and petrified.  I know what it’s like to feel “loss.”

At 20 years old I became pregnant again.  By that time life wasn’t as stressful.  I was still unwed and earning $5/hour. However, the conflict my boyfriend and I had was long over.  The pregnancy was an AMAZING experience: hearing the heartbeat, the movements on the sonogram screen, and of course feeling the baby kick for the first time.  Every single moment felt like a gift.

Looking back at my beautiful son now, I can’t imagine having aborted him.  My life wouldn’t feel complete without him in it.

befunky-collage

But the bigger question in my mind is “Why do so many women get to the stage of Abortion?”   In 2014 (latest data avail), 926,200 abortions were performed in the United States.

Why aren’t we educating our daughters more on the many preventative options? While I understand no birth control method is a 100 percent guarantee, most are pretty good.  Between birth control pills, condoms, spermicide, IUDs, Depo-Provera shot, NuvaRing, the Patch, etc., the chances of getting pregnant should be pretty slim.

I don’t want to hear: “Birth control is expensive. I couldn’t afford it.” Condoms are dirt cheap and anyone of any age can buy them.  Condoms are 98% effective in preventing pregnancy.

orgasm-donor-condom-foil

If a couple “slips up” and doesn’t use protection, why isn’t the Plan B pill the next step?  It’s a far cheaper option, and less mentally draining than an abortion.  Anyone 17 or older can buy Plan B One Step over the counter at a drug store or Planned Parenthood facility. If you’re under the age of 17, you can only get the morning-after pill with a prescription from a health care provider.

I’ve utilized the Plan B pill option twice in my life, and I don’t feel guilty for it.

I have a dear friend who got pregnant at 16 years of age.  She didn’t know that the Plan B pill had to be taken BEFORE the pregnancy actually happened.  Ultimately, she decided to keep the baby. Today she is the proud mother of a beautiful teenage daughter.  She couldn’t possibly imagine her life without her daughter, she said.

The 44th Annual March for Life is this Friday, 27 January 2017 in Washington, DC. Although I will not be attending, I support the cause. I know the turnout won’t be as widespread and popular as The Women’s March but that doesn’t make this cause less meaningful in my eyes.

If you’re a Pro-Choice person, I hold no judgment and I’m not going to debate you over it. Your journey with or without, believing or not believing, in God is for you to decide. All I ask is that you also respect my decision to be a Pro-Life Christian.

Please watch:

 

Courageous Boy with Rare Cancer Fights Back

The Story of Nolan Scully – A Superhero

There is no greater love than the love a parent feels for their child.  It’s almost indescribable – the great measures a parent would go through to protect their child from any harm or injustice. They’d give their last dying breath if it meant just one more day in the life of their child. There’s something particularly special about the bond between a mother and her son. It is the purest love, unconditional and true.

Jonathan and Ruth Scully of Leonardtown, Maryland, welcomed their beautiful baby boy, Nolan, into the world on September 7, 2012. His nine-year-old sister, Leila, couldn’t wait to meet her baby brother.  Life was good for the next few years. “Rollin’ Nolan” lit up a room with his contagious laughter and outgoing personality.

2.jpg

Jonathan and Ruth were expecting again and the baby was due the end of December 2015.

In October 2015, three-year-old Nolan came down with a stuffy nose which a parent typically wouldn’t stress over; that is until Ruth noticed her son began snoring and having difficulty breathing. Doctors thought it was a severe sinus infection and prescribed Nolan some potent antibiotics, humidifier, and saline spray. The regime didn’t help.

After an emergency appointment with an Ear, Nose and Throat (ENT) specialist, it was discovered that Nolan’s adenoids were extremely swollen and surgery was needed. In November 2015, Nolan had his adenoids and tonsils removed.

A few days after the operation, Nolan’s biopsies came back. Nothing could prepare a parent for what was about to happen next. The doctors told the Scully’s that Nolan had a rare and aggressive form of cancer called Rhabdomyosarcoma. This type of cancer is every bit of cruel in its silent relentlessness.

There are two types of muscle cells in the body: smooth muscle cells and skeletal muscle cells. Smooth muscles control involuntary activities; skeletal muscles control voluntary activities. Rhabdomyosarcoma (RMS) is a malignant tumor (cancer) that arises from a normal skeletal muscle cell.

About four children per million healthy kids under the age of 15 will develop RMS each year. It is slightly more common in boys than in girls and it is most common in young children under the age of five.  Nearly 40% of all RMS cases involve the head and neck region. 

In an instant, the Scully’s lives were turned upside down and life would never be the same. There’s an intense shock, confusion, anger, disbelief and overwhelming sadness that comes with such a diagnosis.  Paralyzing fear doesn’t begin to describe the panic his parents felt.  On top of all that, Ruth was pregnant. How can a mother enjoy her pregnancy when one life is growing while another is suddenly sick with life-threatening cancer?

The Georgetown University Hospital, Pediatric Cancer Clinic, immediately took over Nolan’s case. PET Scans, CTs, and bone scans were ordered. Because the doctors had discovered an obstruction (tumor) in Nolan’s nasal airway, sedation for his tests wasn’t recommended. Instead, Nolan was admitted to the Pediatric Oncology unit where he was put under general anesthesia for the procedures. The surgeons also put in a chemo port.

“That was one of the most hardest, most terrifying things we’ve ever had to experience… seeing our beautiful baby hooked up to a ventilator machine,” Ruth explained.

The family was heartbroken and beyond devastated to learn that Nolan’s tumor was considered “inoperable.”  However, his tumor appeared to be isolated to his nasal pharynx which is right through your nose and right above where your throat is.

Just like that, this brave little boy would begin the toughest journey of his life.

Nolan would have to complete 43 agonizing weeks of chemotherapy, and that didn’t include the shots, infusions, transfusions, scans, tests, and constant blood withdrawals. Imagine the sorrow his family felt in hearing that news, and the guilt in knowing they can’t save him from this nightmare.

The Georgetown Hospital Pediatric Oncology Department became Nolan’s second home over the next several months.  Obviously a hospital isn’t a preferred second home but having a wonderful staff made the stay a little more bearable. Nolan received his own team of care providers and they treated him with much love and kindness. The doctors analyzed every possible avenue to speed-heal Nolan from this cancer that had silently invaded his little body.

35

Jonathan and Ruth turned to family, friends, and the community for much needed support.  The emotionally draining, uphill battle would be impossible to face alone, and they needed to maintain their household and care for Leila. Somehow Ruth found strength to begin chronicling her son’s journey on Facebook (NolanStrong).

The downward side effects of chemotherapy kicked in. Nolan started losing his hair and he was very upset over it.  His parents comforted him by taking him out to see the Christmas lights around town and it helped cheered him up. Sickness and exhaustion became a regular part of Nolan’s existence, but the amazing Georgetown staff kept Nolan occupied throughout the day with activities such as painting pictures and playing with construction trucks.  He had his invisible super hero cape on and he was ready to kick cancer’s butt!

12439060_10204865314507476_7080981358006483375_n

Nolan has a strong appreciation for any type of first responder. His dad is a deputy fire chief and Nolan hopes to follow in his father’s footsteps someday. He loves any type of emergency vehicle – fire trucks, police cars, ambulances, etc. So, the Hollywood Volunteer Fire Department paid Nolan a visit in their fire trucks.  Nolan glowed in excitement!

More of the community began showing their support.  Nolan received a visit from the Washington Capitals! Also, the NolanStrong 5K benefit was held.

On December 26, Ruth gave birth to healthy baby boy.  They named him Brayden. Nolan was unable to meet his little brother until a few days later because his immune system could have been compromised.

10593087_10204835125592772_2501576915696779939_n

Before the family could even blink an eye, Nolan began radiation treatments in Philadelphia (February 2016).

The NolanStrong page had been attracting a lot of attention and people wanted to do anything they could help. A creative fundraiser called “Buzz Off Cancer” was held at the Gatton Barbershop where customers donated dollars for a buzzed-off haircut.  It also marked a courageous day in Nolan’s journey as he bid farewell to his hair for the first time since his cancer diagnosis.  Although Nolan had been the favorite customer of the day, it was incredible to see the many long-haired men in line for a buzzed-off haircut. It was a great turnout!

30

Ruth kept Nolan’s followers informed of his struggles. Fevers, headaches, vomiting, ear and eye pain became a part of his daily life.  At almost four years old, Nolan weighed only 13 pounds more than he did at six months of age.

Fire services continued to show their love and support for Nolan. The East Farmingdale Fire Department sent gifts. Then, the Philadelphia Police Commissioner inducted Nolan as an Honorary Philadelphia policeman. Nolan was so excited!

64

Summertime came around and cancer and a weakened immune system had robbed Nolan of so many fun activities.  He couldn’t attend a planned Nationals baseball game, go swimming, or play in the sand.  But Nolan has a warrior mentality and he told his mom, “That’s okay, Mommy. Once I get my cancer out I’ll be able to do anything I want.”  So, Nolan’s parents scheduled fun activities whenever possible.  They visited Jurassic Quest and the National Harbor. He also got to shoot hoops with the Washington Mystics.

13769473_1739022393018957_8255404881248135357_n

More fundraisers were coordinated by family and friends – Softball and corn-hole tournaments, silent auctions, raffles, participating restaurants, sold-out dances and more. The outpouring was incredible.

By August 2016, Nolan’s health took a turn for the worst. Testing revealed Nolan’s cancer cells were still very much active.  August 29, 2016 was supposed to be his last day of scheduled chemo. Ironically, and with great sadness, it became his first of 50 more rounds of chemo, and this batch would be far more potent.  Additionally, a different kind of radiation would be considered and possibly surgery, his parents were told.

14449809_1766456336942229_2030952057221493178_n

Through all the chaos, heartache and disappointment, time would pause for just one day.  On September 7, Nolan celebrated his 4th birthday.  Family, friends, schools, and the community sent Nolan gifts, cards, and get-well letters.

Later that month, Ruth shared a sentimental moment with Nolan’s Facebook fans. While lying in bed one evening, she laid her head up against Nolan with her eyes closed. Nolan thought his mother was asleep. He kissed her on the forehead and whispered, “I’m so lucky to have you as my best girl.”  Ruth later blogged to say it was her that’s the lucky one. “Lord, please spare my child and let him win against this beast of a cancer,” she wrote.

14632879_10206637886660672_6426613910884672893_n

Nolan’s courageous fight has united thousands of people together in daily prayer. He’s a super hero who just wants to be a normal, healthy little boy enjoying his life.

A year has passed since the Scully’s learned of their son’s cancer yet the strength of Nolan and his family continues to persevere.  They won’t quit and they’ll never give up.  So, when the doctors told them their son’s tumor had considerable growth even though he’d been through two aggressive cycles of chemo, they knew their last hope was a risky, invasive, and terrifying surgery.

A prayer vigil was held on October 23, 2016. Although Nolan couldn’t attend, he passed along a few things he is thankful for: ham and pineapple pizza, watching movies and eating popcorn while lying on his mommy’s lap, sunny days where he can play outside, and he asked that everyone pray for fire fighters and policemen. That evening, a selfless Nolan warmed hearts around the world with a video to all of his Facebook fans. Yes, he is determined to beat this cancer.

The next morning, Nolan underwent a 12 1/2-hour surgery to remove the tumor, and bone-grafting to make repairs caused by the tumor. The approaching weeks are going to be incredibly difficult and painful.  Nolan has gone through more tragedy as a four year old than most adults go through in a lifetime. He is a real-life super hero – a conqueror.

14040116_10206191762907857_59912680576700803_n

Today, he continues to fight for his life and he has thousands of followers from all around the world.

Consider joining Nolan in his fight!  He loves receiving letters, cards, words of encouragement, and of course, gifts.  Prayers are most appreciated! Contributions are welcome: ICO Nolan Scully, PO Box 2443, Leonardtown, MD 20650. Donations will help with incurred medical expenses, travel, lodging and additional expenses throughout Nolan’s battle.

To see this story on The Huffington Post:

Courageous Boy with Rare Cancer Fights Back

Brave Girl Battles Two Rare Diseases

Chloe’s Hope: Stop the Burning

What does a juvenile disability look like?  Some might envision a homeschooled child or perhaps a wheelchair user. What if a child outwardly appeared normal yet their insides were screaming in agony?  Try to imagine a child who’s never known a life without horrendous pain and suffering.

That is the case for 11-year-old Chloe Louise Kuschert of Corowa, a town in the New South Wales in Australia. She oftentimes cries to her mother, “Why me? Why can’t I have a normal life? I hate this so much.”  But all her mother can do is comfort her and wipe away the tears streaming down her face.

Chloe was just two years old when her health began rapidly deteriorating. It started with a sensitive area that some people wouldn’t feel comfortable talking about. Debilitating symptoms of bleeding, swelling, redness and pain developed in her vulva (female external genitals) area. As her condition progressed, the burning became so excruciating that Chloe could no longer function. Her life became overshadowed by throbbing pain and discomfort. After visiting numerous doctors over a 4-year period in Australia, doctors were still unable to diagnose Chloe’s condition. The doctors decided to have Chloe’s medical chart reviewed by a pediatric group based out of the United States where a genetic specialist finally made the diagnosis.

Chloe had a rare disease called Erythromelalgia (EM) which not only affects her vulva area, but also her face, ears, and hands.  The condition affects 1.3 in 100,000 people, and there is no cure.

EM causes unbearable burning pain, noticeable redness of the skin, swelling, and increased skin temperature. The exact underlying cause of EM is unknown. It’s thought to result from vasomotor abnormalities or dysfunction in the normal constriction and dilation of the caliber of certain blood vessels, leading to abnormalities of blood flow to the extremities.

There isn’t a typical treatment for EM, and sometimes nothing helps. Chloe has tried many prescriptions and supplements, and dealt with dreadful side effects. She is on a strict ‘cooling’ regime to prevent overheating.

chloe-flares

EM flares on Chloe’s face and ears

“Managing her EM pain is incredibly difficult,” said her mother, Jacqui. She  went on to say that every day is a battle in which Chloe fights for her joy and freedom from pain. Since the condition also affects her private area there is no way of knowing the impact it will have on adulthood with sexual activity and childbirth.

Chloe’s health continued to worsen over the next several months after her EM diagnosis. She began experiencing vaginal bleeding, frequent toilet needs, urinary incontinence and burning along with bladder and stomach pain. After seeing several doctors, going through more examinations and cystoscopies, a gynecologist diagnosed Chloe with interstitial cystitis (IC), a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region.

13528673_10153835649888924_5712632681282804790_n

“I felt helpless as I just sat there crying. I wanted to take all of her pain away,” Jacqui said.

Chloe has been repeatedly tested for everything you could possibly imagine and still no doctor can provide answers.

11407293_10153022299128924_5816319947893642893_n.jpg

Just a few months following the EM and IC diagnoses, Chloe developed more unbearable symptoms. Her joints began aching and swelling, and she bruised more easily. She had trouble walking due to the pain in her knees and ankles. Ultimately a rheumatologist diagnosed Chloe with Ehlers-Danlos Syndrome (EDS), a group of inherited disorders marked by extremely loose joints, very stretchy skin that bruises easily, and easily damaged blood vessels. EDS affects about 1 in 5,000 people globally.

14142038_10153993211303924_7369401315171387020_n

Most parents couldn’t fathom their child dealing with one rare disease let alone two.  The effects of having all three conditions has caused Chloe to have fainting spells, abdomen pain almost daily, dizziness, and low blood pressure.

10500350_10153214264648924_8871522948111241647_n

“To manage her many combined symptoms Chloe regularly sees a local general practitioner, pediatrician, gynecologist, neurologist, and a cardiologist. Currently she’s taking 11 pills a day plus a pain reliever in an effort to give her a somewhat normal life. Of all her conditions, EM is the most painful for Chloe,” her mother said.

Chloe is in the fifth grade. She battles through the pain most days because she loves attending school. Her teacher is very kind to her, and her classmates are supportive and understanding. She’s sad to miss school days when she’s overwhelmed by pain.

12143211_10153287630478924_558041538910395719_n

An emotional Chloe as she struggles with daily pain

EM causes the body to quickly overheat during physical activity so Chloe is unable to participate in any outdoor sports. Although it’s disappointing, Chloe maintains a positive attitude. Instead she enjoys reading and doing arts and crafts.

Chloe enjoys spending time with her family — mother, Jacqui, father, David, and brothers, James, 18, and Caleb, 14.  She also loves hanging out with her dog, Molly, and her rabbit, Gizmo.

14356038_10154042299328924_1779551260_n

Chloe with her brothers, James and Caleb

“The unknown is scary. I don’t know if my daughter will ever live a normal life, free from pain and misery. I want her to be happy, and not just have ‘happy moments.’  This is all very devastating.  I also have to accept that she may never experience the gift of pregnancy. I’m heartbroken inside,” her mother said.

Disabilities aren’t always recognizable to the public. So when you see a child who seems carefree and happy, please think of Chloe. There are children out there like her whose lives are a lot harder than they appear to the outside world.

12919742_10153626709988924_1634458375934431799_n

If you’d like to support Chloe Kuschert, you can do so by helping spread awareness.  Please Like and Share her Facebook page titled Chloe’s Hope: Stop the Burning

14388928_10154056088338924_221130773_n

Chloe and her mother, Jacqui

To see this story on The Huffington Post:

Brave Girl Battles Two Rare Diseases

To read more about Erythromelalgia, please see the following blog:

Burning for Hope

Jacqui and Chloe are active members of the “Parents of Little EM Warriors” program where they communicate and share their experiences with other families in need of support. Join “Erythromelalgia Warriors” on Facebook to learn more.

EM Warriors on Facebook

Chloe has also joined the “I Am The Face of Erythromelalgia” campaign.

Please Join Our Campaign here

14368625_908077632632138_2055189663742390454_n

EM Awareness Video:

The Wilted Sunflower 🌻

0910161328-1

Overlooking a field of sunflowers,

A few appeared out of place.

They tried to stand tall but couldn’t,

While others more lovely filled their space.

Gravitating toward the beautiful ones,

As the wilted were quickly passed by.

Few people desire to view the weak,

And this group of flowers is soon to die.

The wind blew the pedals to the ground,

Changing them from golden to brown.

A little more rain and sunshine is needed,

Especially when ‘living’ is bringing you down.

But aren’t they pretty too, these flowers…

Who looked stranded in a crowded field?

For not every blossom can be flawless,

And there are some that may never be healed.

Healing isn’t the same as ‘fixing’ or a cure, 

But rather to ‘accept’  and mend the soul.

So love ALL the flowers to cross your path,

Even the sad blooms that don’t appear whole.

With a new season a fresh life will begin,

And a new journey will soon be told. 

‘Unique’ is still special and worth seeing,

Because eventually all living things grow old.

Written By: Melissa Curley

sunflower

 041f5173d377cdc5fe43c23945a64e1a