Rachel's story.

Her Beautiful Life

By: Wendy Dittman

Rachel Nicole Barber is a self proclaimed country girl.  “I love living in the country and I love my family,” Rachel professes.  The first child born to Molly and Greg Barber may seem like a quiet, timid girl at first glance, but spend time talking with her and you find that is hardly the case.

 

Rachel Pictured Above

Who is Rachel Nicole Barber?  Well, for starters she’s a teenager - fifteen to be exact. She is in the 10^th grade and attends a small, private Christian school in Delaware, Ohio.  Rachel shares many traits with kids her age!  She loves music (One Direction) and books (The Hunger Games and Mortal Instrument Series), but as we engage more in our conversation, I also learn there are other issues that concern her.  While comfortable chatting with me Rachel tells me, “Sometimes it’s difficult to know what to talk about with kids my age.”   She wants be understood and to define who she is on her terms.  “Teens can be real good at hiding what they are thinking or feeling, because they don’t want to get judged by their peers,” shares Rachel.  Teenagers and their parents can certainly relate. These years are a roller coaster ride named the Turbulent Twist! 

I met Rachel when she was just two years old.  Looking back now, I count that meeting as one of the grateful moments of my life.  Rachel’s mom, Molly and I met in the halls of the neonatal intensive care unit.  We developed a friendship with the kind of strong, unique bond that only few can fully understand.  Like Rachel, my daughter was born with a rare and painful skin disorder called Epidermolysis Bullosa or EB.

Anna, Dittman Family Pictured Above. Left to Right Wendy, Thalia, Maddy, Anna and Todd.

The skin is the largest organ in the human body.  Epidermolysis Bullosa results in severe blistering and trauma to the skin and mucosal membranes.  Rachel was diagnosed with the most severe form of the disorder, called Recessive Dystrophic Epidermolysis Bullosa.  Her skin, so fragile, is covered in white bandages to protect her…..every day of her life!  The depth of complications people with EB experience varies as do the strategies they use to cope.  For certain, overcoming physical and emotional pain remains a constant, unrelenting challenge.  Complications from repeated blistering can lead to deformities of the hands and feet.  Strictures, which damage the lining of the esophagus, prevent food from being swallowed and harmful abrasions perforating the cornea of the eye can damage vision.

Rachel knows the statistics and odds, but they can’t counter her amazing resolve.  She pushes herself everyday to forge beyond the chronic pain.  Surprisingly, her secret weapon is pure, sweet wit and a captivating attitude.  “My EB is not going to go away, so get over it,” declares Rachel.  Her conscious decision to view her life through a different lens is one I long to understand.  We talk about where that resolve comes from.  Was she born with it?  Is it because of living with EB?  What role do teachers, friends, nurses as well as the tight-knit support of her brother (who also has Recessive Dystrophic EB), mom and dad and extended family play?

 

Barber Family Pictured Above.

Getting beyond the pain is the only way for Rachel to see what is good.  She tells me, “Everyone says I see the good in others”.  We talk about the closeness she shares with her mom.  Rachel understands how much Molly yearns to defeat EB and take it away from her.  Mom tells people, “EB is the most terrible disease”.  “I just have to look at it as part of life.  EB doesn’t rob me of my life.  It never will!”  For just fifteen years old, Rachel has an amazing resolve to forge her own views; a testimony to the power of her mom’s love.

Rachel also leans on the healing power of humor in her life!  She can’t help but laugh when we talk about Nana and Papa.  “Papa is always dishing out the jabs and I am pretty darn good at giving it back to him now,” declares Rachel.  Of course, Nana is one of her biggest cheerleaders!  “I am her only granddaughter!” Rachel’s grandparents have always been there for Rachel and her brother, Matthew!  They play a big role in their lives.  “I am always meeting new people with Nana” Rachel says with a smile.  I’ve met Nana and understand….She’s quite outgoing!

What’s everyday life like for this determined 10^th grader?  It’s a balance to juggle all the expectations of school under normal circumstances, let alone adding in the extra two hours of bandage changes four times a week.  Rachel is surrounded by supportive people and she is especially thankful for her friend Lauren.  The girls attend school and work as teacher’s assistants together.  

They share the same lunch period and between classes Lauren gladly lends a hand, carrying Rachel’s books.  When the demands of school get overwhelming, Rachel is allowed to have extensions for projects.  She tells me she appreciates the accommodation, but also feels guilty at times because she wants to be “treated like everyone else.”

There are times when the emotional challenges of living with Epidermolysis Bullosa can out shadow the physical pain of the disorder.  Rachel describes how tough it can be when people stare at her.  “Gosh, I just wish I could be like my brother.  He strikes the biggest smile and waves happily to people!”  “I love that about Matthew!”

Rachel and Matthew Pictured Above.

I inquire about the future.  I saw Molly post a picture on Facebook of Rachel proudly beaming with driver’s permit in hand.  Look out Dad!  Her latest battle with a serious corneal abrasion did not keep her from attending her Homecoming dance.  Come fall, she will be enrolled in additional classes, including an on-line university course.  Rachel tells me she dreams one day of visiting England with Matthew and her parents!  “We joke about the trip, but I know we’ll find a way to do it!”  Having goals, pursuing dreams, finding joy….oh and one more thing, says Rachel, “I love my family!” 

Beautiful
life you are living Rachel Nicole Barber. 
Just beautiful! 

What a beautiful story! Please support Rachel by visiting https://debra.thankyou4caring.org/pages/general-donation-form---rachels-story