By Reba Phelps
Every child dreams of going to the big, “D”. My children were no different. As soon as our oldest daughter was of the age where she could navigate a theme park without a stroller we decided to take her to Walt Disney World.
Pixie Dust here we come.
The weather was picture perfect for the entire trip and it was turning out to be just as memorable as all of the commercials portrayed it to be for families. We ate Mickey Mouse ice cream ears multiple times a day, we took family photos that documented the pure joy and thrill of all of the stomach dropping rides. We stood in line for hours on end for autographs and photos with all of the characters.
We did Disney as grande as you possibly could in 2005.
Earlier in the trip we noticed that our daughter had white marks on her right chin. It looked as if it were an aging injury that many young kids collect through childhood. But, on the very last day of our trip we noticed that the white marks were also beginning on her left chin. She wasn’t complaining about them causing pain and she didn’t have fever but my mama bear instincts would not let me overlook this.
This was before the debut of iPhones so I did not have an arsenal of medical journals at my fingertips.
However, we did see that Disney had First Aid Centers throughout the parks. Being the low key worry wart that I was, I was prepared to stand in line for this ride as long as it took.
When the nurse made her rounds, she carefully inspected our daughter. It took her all of five minutes to diagnose that she had the early stages of Vitiligo. She was not worried and told us not to worry. Her exact words were, “It’s just a little auto-immune disease.”
Disease? That is a “D” word we were not prepared to hear. We could see the Pixie Dust disappearing before our very eyes. The nurse exited the room after dropping the, “D” bomb and told us to follow up with our pediatrician when we return home. Again, she was not concerned at all so I tried to follow suit and not be worried.
When we returned home we followed up with our Pediatrician and educated ourselves about this “little auto-immune disease.” We poured over every article we could find and we looked at all of the approved treatments. But, the more we read and the more we learned we realized that it was mainly just cosmetic and it was a loss of pigment to the skin or inability to produce pigment.
A cosmetic disease sounded easy enough and non-life threatening. As time went on it spread to other areas of her body. It changed in size and color and it seemed to travel and disappear. The summer months were the worst as her white spots were more visible because of her ability to tan easily.
Not too long after she was diagnosed with Vitiligo my mother passed away and we had lots of long distance family members come and attend the funeral. One of my Aunts pulled me aside and told me that Meredith was, “Marked”. I asked her what she meant and she went on to explain that she, “Was pigmented and marked by God as special.”
We knew our girl was special with or without marks.
As she approached middle school it seemed to reek-havoc on her self-esteem. She would go for weeks and not even think about how different it made her until someone reminded her.
The reminders mainly came in the form of ill-meaning family people who offered her foundation to cover up the spots on her knees or suggested that we check into tattooing her spots so they would blend in. When faced with adversity such as this, you really get to know someones true character or lack thereof.
Middle school is a time where you want to blend in and possibly go unnoticed. Our sweet girl did not have this luxury. Every time she wore shorts or a dress she found herself explaining what it was and why she had it. Her closest friends never mentioned it and never noticed it. It was just part of who she was. We attempted medication but soon learned that it caused damage to your liver.
The aftermath of the medication was not something either of us wanted to risk just to have her body produce more pigment. We abandoned those treatments.
When her high school years were upon us life became somewhat easier. The school uniforms included pants that remedied her areas that were marked. Her random sad days became less and less. The sad days are practically nonexistent now that she has matured and God has given her peace about her body.
She learned to embrace her differences as God’s handiwork. She even had fun drawing artwork on her spots from time to time. Some of the areas have even completely healed naturally over time.
Our precious daughter was marked from birth. She was marked as a child of God. She was marked with a beautiful soul who makes her care for others more than herself. She has been marked as a true lady with so much empathy for others. These are marks that we wouldn’t want the Pixie Dust to erase.
“Yet you, Lord, are our Father. We are the clay, you are the potter; we are all the work of your hand.” – Isaiah 64:8