Congenital Hairy Nevus and Maintaining a Stiff Upper Lip
Mar 17 '03
The Bottom Line Self-esteem must be instilled in our children from a very young age. Helping children to value themselves unconditionally will teach them to have love and respect for others unconditionally.
Candace is a real trooper and my little hero. I have become extremely stoked lately when I am in the company of Candace. You see, Candace, at the tender age of three years, has somehow adapted to her unusual appearance. To me, Candace represents self-esteem at its best.
When Candace was born, there was complete and unbroken silence in the delivery room. I was coaching my 17 year old daughter’s delivery and I was able to see the entire birth up close and personal. The entire process from arrival and admission onto the maternity ward, to the actual head popping experience was less than two hours.
As Candace arrived into this often cruel and heartless world, I knew that she would undoubtedly have a long and difficult road ahead of her.
At the time of the delivery, until two days afterwards, we had no idea what Candace’s condition was. What we did know is that the doctors and nurses in this hospital had no idea either and had never seen anything quite like it. My young daughter was concerned and I was frightened.
I described her condition as disfiguring and unsightly. Candace was born with a large black growth on her face that was lumpy in areas and had thick black hairs protruding through other areas. The birthmark, we later found out, is known as a giant Congenital Hairy Nevus and affects one out of 20,000 babies! We also learned through Internet research (www.NevusNetwork.org) that facial nevi are even rarer, occurring in approximately one out of every 200,000 babies born!
Well, having a name for her condition, my family and I were finally able to wrap our minds around what this would mean for the baby. For me, it meant that we had a very special member of our family. For my teen daughter, it meant having a new baby to show off to her friends. For the rest of the family, it meant helping Candace to grow into a well rounded individual with high self-esteem. This was no easy undertaking.
We moved away from the city, where the population is very dense, where there were more people to point fingers at, whisper about, gawk at and shun Candace. We moved to the country, where we felt it would be easier to raise Candace and protect her from the children, and many adults, who felt it their right to stare at her and call her mean names.
What we found is that it is human nature to stare at what is different from the norm. Many ignorant people here in the country made it their business to knowingly or not, perform acts of prejudice against sweet baby Candace.
Many days I cried. I cried because Candace simply wanted to play with other children who ran away from her in fear. I cried because the parents were too ignorant to know what to say to their children who were running away from Candace and calling her cruel names like monkey-girl.
Well, by the time Candace was 18 months old, she started hiding her adorable little face with her hands! She decided at this young age, that rather than have people stare at her, she would hide herself with her tiny extremities! It was heartbreaking.
My daughter and I began instructing Candace not to hide her face. We gently guided her with simple words to make others, both children and adults, walk away having a brand new perspective about staring at people who are physically different.
Candace learned to say, “Why are you staring at me?” She would say “Please, don’t stare. I’m just a little girl.” With a lot of practice, we were able to get her on the road to positive self-expression, using verbal means of protecting herself instead of resorting to acts of violence or name-calling. Ignorance begets ignorance. Knowledge is the power in which we all possess that can change the views of others.
Over the past year, Candace has undergone five surgeries to reconstruct her face. The black hairy skin has been successfully removed, improving her chances of living a melanoma free life. The surgeries were difficult for all involved due to the temporary disfiguring caused by skin expanders placed in her forehead and neck. We nick-named Candace “Bubble” and it stuck. She loved it and did not seem to mind people in the Chicago area asking her about her “bubbles”. In fact, she has become a mini spokes-person for children that she meets at Ronald McDonald House in Chicago, explaining in her very special way what the bubbles are for, and how she will end up looking beautiful like her mommy.
Candace made a guest appearance on the Maury Povich show and had her last surgery filmed and aired on The Learning Channel (TLC) this past January. Candace, without realizing it, has helped many, many others who viewed the surgical procedure. She has planted a tiny seed of hope in viewers in this country as well as in Australia, Canada and Great Britain that people born with birth anomalies can live happy normal lives.
Candace is a lovely work in progress, improving and changing with each additional surgery. Perhaps Candace will maintain her dignity and continue to improve her self-esteem by educating others.
That is all I can hope for.
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Member: Miriam Jacobs
Location: New York
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About Me:
My Name is Not Monkey Girl!
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