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Today Is Rare Disease Day  2016 ….Daddy I Wish……

Daddy I Wish….originally posted on my blog You Are Already Beautiful Parry  Romberg Syndrome and Me My story by Cheryl Rick Klein 

I am sharing this very personal story to support #rarediseaseday and #NORD 

If you know someone suffering from a rare disease please reblog and share this post originally written in 2010 to #raiseawareness , #educate and #support others living with a #RareDisease 

  

It has beem 16 years since you left and yes daddy I am still fighting to survive and won’t give up. 
  

Dedicated with love to MANNY RICK my dad who died May 23, 2000

My father was the first to notice that something was very wrong with my face when a small cut by my chin didn’t heal. He wasted no time and took me to every medical expert to find out was was wrong.

He held my hand and told me that I was still beautiful and told me to remain strong. He told me he would never give up to make me well again.

He showed me what true beauty is. You won’t find it in any mirror.
My dad lost both his legs to complications having diabetes.

I told him what he told me so many years ago.

Be strong, you are a beautiful person.

And he was………

It was the day of my little sister’s wedding. I went over to my parent’s house

to get ready for the big event.

Suddenly, my mother, and my two sisters were gathering their gowns and were heading to the door. ” Where are you going ? I asked.”

We have to get to the temple early we are having our makeup done professionally. They didn’t make a appointment for me.

My face said it all. My dad who was watching the situation remarked “I told you it wasn’t right to not include Cheryl.”

I just stood speechless as they pushed past me and headed out the door.

I ran upstairs to my old room and cried. I didn’t understand why I was not included. I lost half my face to Parry romberg Syndrome and it took years of cosmetic procedures to erase the damage on the outside, however in that moment I knew nothing could erase the emotional scars I tried to hide from the world. 

Could my own family be so shallow and actually be jealous I became too pretty???

My father called me to come downstairs.

He had tears in his eyes when he saw me. He opened his arms and hugged me tight. We cried together in silence. 

Then he said the most beautiful words to me I will never forget.

” You don’t need a make-up artist you are so beautiful just the way you are.”

I loved my dad more than anyone in the world. He saw the pain I hid in a smile.

My father also was fighting for his life after he was diagnosed in his late 50’s with Diabetes.

Diabetes is also a auto-immune illness that ravaged my father’s body and eventually took both his legs. 

I told him the same words he told me years ago. “You will always be beautiful to me daddy.” I hugged him tight and he cried like a baby in my arms. 
Parry Romberg Syndrome became a official rare disease in 2001.

Sadly my dad never knew I was finally diagnosed, he died just one year before.
   
  

My Princess Daughter Goes To Work

 

   A few months ago my 17 year old daughter Nikki came home and said “Guess what happened today?” Before I even had a chance to reply she burst out “I got a job mommy!”
     She totally caught me off guard considering the fact I had no idea she was even looking for one. She went on to tell me that she was in her favorite local boutique, Reign,where she frequently shopped and summoned up the courage to ask the owner if they were hiring. 

     The owner smiled and  asked her some basic questions about what grade she was in and her age. When my daughter informed her she was 17 and finishing up her Junior year in high school.  The owner then told her that she normally only hires college age girls that have some prior retail experience. Instead of taking her comments as a rejection, my daughter didn’t get intimidated and told the the owner that she loves fashion and was a quick learner. The owner was suddenly listening now! Nikki added that she lived minutes away from the store and had her own car to get there. Impressed by her attitude and determination looked Nikki up and down and commented “You certainly have the right look and style to work here.” Then she hired Nikki on the spot. 

     It wasn’t a easy transition for Nikki who suddenly had give up her after school naps and couldn’t hang out with her friends as often especially since she worked almost every weekend. She made some personal sacrifices but when she started to get weekly paychecks she had a new found sense of independence and I watched my little girl transform into a beautiful responsible young woman. 

    On my birthday she bought me a beautiful pair of Tori Burch sandels. I was so touched because I knew how many hours she worked to pay for them. I told her she shouldn’t have spent so much of her own money on a gift fot me but she dissagreed and said “Mommy, it’s the first time I bought you a present you deserve because I love you so much!” Of course I cried. 

     Nikki continued to work and she would come home with stories about customers who she helped find the “perfect” outfit to wear for a special ocassion or a college student who needed a whole new wardrobe. Nikki told me how she so good she felt  when she saw a customer smiling as they looked at themself  in the mirror in a outfit she helped them pick out. 

     That was about six months ago and my daughter still works there. It took very little time to prove to owner she made the right decision. Only about a month after she started working , the owner told her that although she was the youngest employee she ever hired and proved to be a valuable asset to her very busy boutique. She even was named “salesperson of the month” that affirmed  Nikki was doing a excellent job at Reign. 

      I also shop in this trendy store where I now even get a 20 percent discount! A perk of being Nikki’s mom. Lol. One day when I was in the store the owner pulled me aside and told me that Nikki was loved by her customers and the store staff. “I am adopting Nikki,” she joked.  “You can have her until she leaves in a year for college.” I jokingly repied.Then she said on a more seriously note “You should be so proud of yourself for raising a daughter that is so responsible, confident and respectful of others.” She added “These things can’t be taught at school.”

       As I left the store that day I thought to myself although me and husband certainly weren’t perfect parents we did a pretty good job raising our Nikki! 

       I am one proud mommy!

 

   Nikki and Me