This and That at The Peanut Butter Cafe & Roadhouse

Chiari lessons from CarePages

February 14, 2008 AmeliaJake

I few months ago, I didn’t know Chiari Malformation existed and the I gave across the topic while doing some research on CarePages. Frankly, I feel lucky that I don’t have it and I feel really bad for the people who do. It is a bottom-of-the-skull thing; it is a PAIN thing. As I understand it, you are born with it and it may lie dormant for a long time; then again, it can assert itself in childhood. It’s trademark is PAIN. A lot of it.

Obviously, I do not understand it very well, but I understand these CarePages I have been reading. One of them was featured on the CarePage homepage, along with an invite to read Gabe’s story. Reading it may be difficult, but, hey, living it is . . . Well, that is the stuff of nightmares.

***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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