I’m so tired so for tonight I thought I would post the original extended version of CNN’s article. Debbi from CNN was an artist. When we were speaking she weaved the story to a pose that flowed really well.  There were only a few small edits that for the purpose of this blog doesn’t matter.

It is REALLY awesome, but long so no worries if you don’t read it all. Here goes:

 

We first met Penny when she wrote to us following a CNN Photo Gallery showcasing children suffering from the disfiguring effects of Agent Orange.  With photos that would be difficult for some to view, our gallery was prefaced with the standard “viewer discretion” advisory.  Penny’s heartfelt email to us spoke of the anger and sadness she felt over the “graphic content” warning given to photos of children who look different.  Having been born with Left Hemifacial Microsomia and Golden Har syndrome, Penny was left with a portion of her own face malformed.  Seeing the CNN Gallery touched an emotion in her and she was compelled to reach out to us and share her concerns over what she found to be an insensitive label.  She asked “how can I not speak up about this? If not me, then who will speak on behalf of these children?”  So we invited her to educate all of us by sharing her story and allowing us to see the world through her eyes.  This is her story.

 

 

As a little girl she never got a valentine at the school Valentines’ parties. 

 

As a teenager she never had a best friend.  Or a boyfriend.  Or a date. 

 

As a woman she’s never had a relationship.  She’s never had her first kiss.  

 

Her dream to one day become a wife and mother is beginning to fade, and she is coming to terms with the reality that it will probably never happen. 

 

Penny Loker was born with Left Hemifacial Microsomia and Golden Har syndrome, two birth defects that left portions of her face disfigured and require a lifetime of surgeries as the face grows and changes.  Hemifacial Microsomia is characterized by the malformation of the ear and/or the structure of the lower jaw.  Golden Har syndrome is a congenital condition that produces abnormalities of the head and the bones of the spinal column.  It usually affects the appearance of eyes, ears, facial bones and the mouth.  The conditions are complex and complicated, as are their names.  But for a little girl facing a big world, the names were simple – Monster, Ugly, Freak. 

 

Penny was raised in a home where love and acceptance was given freely.  Her father died soon after Penny’s first birthday, but her mother was a strong, loving woman who readily took on the challenge of raising Penny and her two sisters.  Even though money was tight, her mother worked hard and made sure her children had the things they needed.   She knew how important her role as mother was because she had survived her own difficult childhood, quitting school at age 10 to care for her siblings when her own mother walked out on them.   So it came naturally to her to put her children first and provide a nurturing environment.  Working in a variety of low paying jobs – often two or three at a time – she was determined to make a good home and a good life for her family and teach them of the truly important things in life.

 

In the safety and comfort of home Penny’s looks were not an issue and she was not treated differently than her sisters.   While she knew she looked a bit different she had a child’s unawareness that anything was “wrong” with her.  But the day came when it was time to start school, and that’s when she first discovered how different she was.  Her life changed at that point, and away from home she spent a lonely childhood never being included in games, parties or other events.  She had no friends and was always chosen last for recess games.  She accepted the name-calling as part of her life and seemed to understand that crying or fighting back only made it worse.  So she quietly endured it. 

 

As she got older the name calling continued, but was more often behind her back than to her face.  By the time she reached high school she had learned there would be no friends, parties, or dates; being included was not part of life for a girl who looked like a freak, and she understood that now. But she continued to bravely face each challenge and to hope that time would bring her an opportunity to educate others, and to teach the importance of seeing others with eyes that saw beyond the surface.  While day to day encounters with strangers brought the same hurtful stares and comments, being used to it made it easier to bear.  But then came a day, one day in particular that brought with it a cruelty that remains a vivid memory to this day.

 

She had finished high school and on a day not too long after graduation she visited a local beauty salon with a gift certificate for a manicure and pedicure. This would be the first time she’d had one, and the experience itself was wonderful. Admiring the handiwork of the manicurist, she felt for the first time in her adult life a real sense that she was pretty.  She left the salon feeling happy and hopeful, enjoying the walk home on that beautiful day.  But less than a block from the salon she encountered a carload of teen boys who slowed to look at her, and began pointing and calling her names.  The pretty nails made no difference at all.  She was the same girl that everyone made fun of and no one wanted for a friend.  She was not beautiful after all.  The joy that had filled her heart mere moments ago was replaced with a feeling of shame and humiliation.  She remembers that day as one of the worst. 

 

Today Penny is a 31-year-old working woman who lives in Waterloo, Canada.  She leads a simple and happy life, although a somewhat lonely one.  While life has left her with a few unfulfilled dreams, things have become easier as she has matured.  She has a core group of girlfriends (including her sister) who cherish her for her friendship and personality.  She makes a good living and speaks proudly of being able to provide for herself thanks to her job as a telemarketer with Rogers Communications, a wireless voice and data communications provider who just last month was recognized as a diversity leader corporation in Canada.  With a multi-year diversity plan developed and championed by both the company’s senior leaders and employees, the company is committed to creating and maintaining a respectful workplace that recognizes the talents of a very diverse staff.  Penny is one of several special needs employees there and has been with the company for eight years.  She’s had the opportunity to grow in her career with them, and to learn about life, both the cruelties and the kindness when you face each day outside the safety of home.  That’s important to Penny.  She longs for normalcy, stability and to be “just like everyone else” in the world that is hers.    

 

There are many adventures in life that she is hesitant to embrace even though she is physically able.  She doesn’t visit malls very often but when she does she prefers not to go alone.  On occasion she will muster her courage and challenge herself to make such a trip alone, using it as an opportunity to win the battle over fear, an ever-present enemy ready to pounce and rob her of new experiences.  She loves the outdoors, but only feels safe in those adventures if her friends and family are part of the outings.  And while visual problems from the condition make viewing 3D movies impossible, she does enjoy movies and feels somewhat shielded by the darkened theatre.  She has never been on a vacation and says the thought of one is scary, yet it’s a feat she is determined to accomplish.  She is saving now for a trip to California to visit either Blizzcon or Comi-con. “I’m kind of a geek and play the online MMO World of Warcraft with my sister and her husband, and we always talk about how cool it would be to go there. People dress up so I would feel ‘normal’ and not out of place.” While she saves for that “someday adventure” she continues to think positive thoughts and prepare for the inevitable incidents that she has learned will be  part of the trip, but she’s excited about it and ready to face it head-on. 

 

And of course one of her greatest joys is being able to help her mother, who continues to work a 40-hour week but allows Penny to indulge her with a few niceties to make life easier.  Penny has never forgotten the sacrifices her mother made for them, and she’s never forgotten how beautiful she is in her mother’s eyes.  She knows that her mother’s unconditional love from an early age gave her the strength she would need to face what can be a very cruel world from time to time.  And that’s ones of the things she wishes she could change by educating others, especially children, whose natural curiosity will eventually become cruelty if left unaddressed.  She believes that educating them early on would help them learn to be more tolerant of others who are different.  While she knows it would be difficult to do she wishes adults would bring their curious children over to her and kindly ask about her appearance.  She would welcome the opportunity to help them understand about the condition that has made her this way.  “Educating folks is my only agenda here.  If I can help teach others to be open and honest, to remember I’m human and have feelings, then there’s a chance for a kind of compassion that may help others.”  Penny hopes for a way to eventually remind people that who you are is found inside, and the outside appearance is only a shell for the heart and soul that lives inside.  “The ability to love, teach, share, and bring happiness and health others is the real beauty of a person.  The exterior doesn’t necessarily reflect the beauty that often lives inside.  And when people fail to remember that, they can miss out on the love and friendship of a truly special person”. 

 

But until that day comes she hopes only for “good days”, which for her means days where she is ignored.  “Most people hate being ignored, but I welcome it.  When I go out to dinner with my friends and no one at the restaurant stares at me or asks to be moved to a table further away from me, that’s a good day.”

 

And in spite of it all Penny is quick to point out her many, many blessings.  Being able to share a home with her family, having a job she loves, having good friends and a good healthcare system to help with the cost of a lifetime of surgeries are all things that she counts as blessings in her life.  The only sadness in her life now comes from knowing that unless she meets someone special enough to see past what other men in her life have so far been unable to look beyond, she’ll probably never have her most desired dream realized.  And that is to be a wife and mother.  “I was blessed with a mother who, by example, taught me how to love patiently and unconditionally.  I would love so much to share that with a family of my own.  I understand it will probably never happen, and I am learning to accept it.  But I am sad about it.  It feels like the one great loss in my life”.