Something funny about having Chiari

General
1

Lately I have to find something lighter or humorous to keep me thinking positive on days where I am in so much pain. I have a funny story to share...

I have a 15 year old nephew with autism. His name is Tony. Kids with autism usually have a topic, activity or object that are passionate about. Tony is passionate about things with batteries. Somewhere he has gotten the notion that our brains have batteries. He can come up with some really good theories about how we get are batteries, how they are charged and how they are fixed if broken. Tony was close to my dad who died in August of 2008. I had my first surgery in 2010. He was concerned that I would die because grandpa went to the hospital and didn't come back. (I know what your thinking....this isn't funny...I'm getting there).

My older nephew Marshall (his brother) and my sister tried to explain using Tony's concept of batteries in you brain to let Tony know that I would be okay. Somehow it was told that the doctors were testing my battery. So...when I got home from my decompression surgery I was peppered with a million questions of what type of battery and how they "recharged" me, etc. Two months later, I ended up getting a VP shunt. My sister stayed with me at the hospital. We went to her house when I was released. The first thing she did was tell Tony they put a new battery in my brain that could be checked by a computer so they didn't have to cut open my brain anymore. She then told him that the battery was too big so it was sticking out a little bit. She brought him over and showed him the VP shunt. (for those who don't know, a vp shunt leave a visable bump that can be seen and felt).

Two years later, he has not forgotten about my "battery". His bragging rights to anyone he meets is that his aunt has a new battery in her brain. I have had to answer some really strange questions, usually in the store, about my "battery" in my brain. He is so passionate about my battery that he has convinced several people, adults and kids, that I have a battery in my brain. In his own way he has opened the door to educating family and friends about CM. Every time I see him, he quizzes me about whether I'm taking care of my battery or not. I get a lecture if he thinks I'm not taking care of it. When I am down, I think of him and how is an amazing young man.

Does anyone else have any funny stories related to their Chiari experiences?

2

nothing, but Tony sounds like a VERY WONDERFUL gift. Thanks for sharing, that made my day a WHOLE lot BRIGHTER.

3

That is an amnazing story!

I have nothing funny like this. If i think of something I'll share:)

4

That is a great story! Thank you for sharing:) Kids really are the best medicine:) My niece, Bella, is almost 2 years old and she is obsessed with my ice packs. She calls them “Burr cold.” I usually sit with a pillow holding an ice pack on the back of my neck and another pillow to hold one on top of my head. One day, I got up to use the bathroom and I came back to find her doing the exact same thing with my ice packs and pillows. We all got a good laugh about it:)

5

My daughter Victoria was born with two Angel kisses. One exactly over the Occitptial area of her brain down to the nape of her neck (her hair hides it now) and a flame between her eyes. They only time you came see the one between her eyes is when she is mad... : ) .......A lady at church told me they were angel kisses when Victoria was born & she was in her 60's and had one exactly like it forever. Then another lady said the one between her eyes was her third eye.....I just know she is perfect regardless. Kids are wonderful and good medicine.

Katie Gleaves said:

That a wonderful story. It reminds me of my son hemangioma. He is 4 and has had a large red hemangioma on his left cheek right under his eye since he was 2 weeks old. We need to have it removed now since it didn't shrink away as they thought but that's not what I'm getting at. My little sister will be 16 soon and she and I got tired of everyone asking what it was. Adults youcan explain to but kids are so curious. One day this little girl was talking to Destiny and she asked about Duncan's face and Destiny didn't know what to say. Both girls looked at me with puzzled looks on their faces. I'm not sure where it came from but I leaned over to her and explained that he was a very special baby because his mom had always been sick and shouldn't have been able to have him so that is a special angel kiss to remind the world he is a miracle baby. It's been the story ever since.
Z