Just Me - AmeliaJake

Winter vitiligo

January 25, 2012 AmeliaJake

Vitiligo – that’s what I have. I’ve had it as long as I can remember. White spots on my knees and ankles. Then in my 40’s I got some spots on my torso, and in my 50’s it showed up on my hands. Every year in the winter, I vow that I will start using sun screen and wearing gloves when the spring comes with more time outside and more direct sunlight. Every year I forget.

So, every summer the white spots show up big time; it doesn’t bother me and I don’t even think about it until someone asks or warns me that I must have gotten something on my hand. It is dramatic-looking and I find quite a few people assume I have been burned. Thankfully, not.

Anyway, I’ve taken this picture – because I was sitting here with my phone and my hands and not much motivation to do anything – and I’m going to compare it with one I will take in high summer. When it is time to compare, the winter picture will be right here and I won’t have to search through files for it.

That is the reason for the boring post.

UPDATE: Well, rats, I bored myself right into forgetting to post the picture.

***Jody Lynn Vance: 1985-2011***

Jody was born at sunrise on a bright, sunny, cold, snowy Groundhog’s Day and from Day One she was a gift to everyone around her. Her infectious laugh and rambunctious spirit made her the center of attention where ever she happened to be.

She and her Dad would watch Sesame Street and sing at the top of our voices (and quite out of key) all of the songs. She enjoyed having Mom fix her hair so it was fancy and just right.

As a toddler she had quite an impressive vocabulary and often had a lot to say. One time Dad was headed out the door to go to work and she pointed her finger and said, “No. No. No. Don’t go anywhere!“

Jody was very seldom crabby, always happy and she wasted no time in spreading that joy to everyone around her. Jody’s favorite place was to be perched on the lap of Mom or Dad or playing with her toys spread out all over the floor. Jody was always affectionate, wanting hugs and “moochies” as she called smooches on the cheek.

At around two, Jody’s illness began to attack her. It took a beautiful, innocent child and put her through untold pain and suffering,

I know that through all of that she was not afraid. She had the heart and spirit of lion. She never gave up; time after countless time, she would open her eyes and there would come that smile. Jody lost her speech, but never was at a loss for words. She could say more with a look or a half smile than most people do yakking all day long.

After numerous doctor, hospital, and specialist visits, we were given the news of her illness. I remember that moment frozen in time … it was as if the entire world stopped. It was in that brief moment we both knew that we must make the very most of the time we had remaining together and not dwell on the despair of all of the things that would never be.

Jody was not expected to live more than three or so - but she had too many things to do and stories to tell, so she cruised by that birthday and over two more decades of birthdays, Christmases and millions of smiles and hugs. Jody was well-liked by other kids; once when she was being wheeled into her classroom at Handicare, one of the children yelled, “Hey everybody, Jody’s here” and all the kids cheered.

Two of the biggest joys in her life were her two little brothers, Joey and Sammy. She would just beam with joy when they would sit next to her and when they began to get older she’d love to listen to them running through the house and playing together. The two of them would start laughing and Jody would laugh right along with them. She would listen intently to everything they did and they would include her as often as they could. The three of them loved watching Saturday morning cartoons and The Three Stooges.

Joe and Sam did without a lot of things that other kids had, did and took for granted … and they never once complained or were resentful of the way things were. That shows a special kind of love and a special kind of family.

As the years went by and the boys grew up into strong and healthy, Jody’s health slowly and steadily declined. She would have long stretches where she was fairly stable and then would become so very ill.

Many times we were sure the end was near and then she would open those sparkling blue eyes and stretch just like nothing had happened at all.

Once she was in the hospital with her usual bout of pneumonia and lapsed into a coma; this went on for 8 days. One Dr. came in, examined her and just shook his head. Later that night Jody’s eyes popped open and she was refreshed from her cat- nap.

People over the years have commented, ”I don’t know how you do it. ”This always struck me as odd. My thoughts would always be: How could you even think of turning your back on someone who needs you that much?

It was always our promise to Jody that she would always live at home with her family and I think she found comfort in knowing that.

But, no one person can take the credit for caring for this wonderful young woman. It has taken an army of doctors, nurses, teachers, aides, pharmacists, friends, and family over the years to maintain Jody at home, and we could never begin to thank you enough.

Jody always kept her head held high and never seemed to be afraid; she has truly been my inspiration on many occasions. When things were gloomy and seemed hopeless, just one smile and a hug was all I needed to go on. Jody will always be my hero. I love her and will treasure the time we had together.

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