Freaky Friday

O Holy Night

sung by Eric Cartman

As promised, here is another 'Freaky' Christmas song

Happy Holidays

XO

Thriving Thursday

Many Blessings

XOX

Whatever Wednesday

Man I just love Christmas time! I can't get enough! I started decorating this year, the day after Halloween! I took down all the pumpkins and fall stuff, and started putting out the Santa's and Snowmen.

Christmas to me is so magical, I just wanted to make it last as long as possible. :)

Every year when I decorate, I look back to the Christmas before, and then all the time between. It's been quite a year!

This year was filled with MRI's, CTScans, kidney problems, Tumor in the lungs scare, Rachel's brain tumor, Rachel's vision problems, Braden's headaches and MRI's, Braden's tumors, My Hydrocephalus, and crazy wacky doctors, who don't listen, my own brain tumor and vision/hearing problems....MAN, that's enough for a lifetime!

But even as I look back on all of that, I feel blessed. I still have my kids to hold and squeeze. I still have them begging to peek at "just one" of their presents.

Through all the pain and heartache this year brought to our family, it has brought much more happiness. This year has made me realize that I need to slow down, and accept help when it is offered (even though this is VERY hard for me to do)

I have also discovered my THRIVING attitude, and created a blog, where I workto bless people's lives and make a difference, even in the smallest of ways. I know my NF families have made an impact on me, and I am so blessed to know you all.

Happy Holidays

Turn it around Tuesday

TRIVIA EDITION

Today we are turning things around by educating folks about Neurofibromatosis! The next couple Tuesday's will have some trivia questions that I would LOVE for you to try to answer. Let's get the word out and tell people about NF!

Education = Power!

"Education is not the answer to the question. Education is the means to the answer to all questions."
-- William Allin

1> Neurofibromatosis has been classified into three types. Can you name them?

2> What is THE MOST common feature of Neurofibromatosis Type 1?

3> True of False "NF" affect males and females equally?

4> True or False "NF" is very contagious?

5> How many people WORLD WIDE does NF1 affect?

6> What is THE MOST distinguishing feature for "NF2"?

7> What was the name of the man commonly known as "THE ELEPHANT MAN"?

8> How many people WORLD-WIDE does NF2 affect?

9> Which chromosome does NF1 affect?

10> How many people can YOU personally educate about NF?

One of the greatest gifts we have, is our voice. With our voice we can talk to others about Neurofibromatosis. We don't have to fear this disorder. Each day may bring us challenges, but it also brings us a new opportunity to teach someone.

Go out and use your voice today....make an impact on someone and talk to them about Neurofibromatosis!

Keepin' it Real

Motivational Monday

I was 8 years old when I stopped believing in Santa Clause. One day while my mother was at work, I went through the house to sneak a peek at any presents I could find.

When I finally found my mother's hiding spot for the gifts, I very carefully unwrapped a corner of each box, just enough to find out what I was getting. I made sure to tape it back, just as it was, to make sure I didn't get caught.

When Christmas morning came I ran out to the living room, only to find the same exact gifts under the tree, that I found under the bed, the week before.

"Love Santa" was written on the tags, with handwriting that was all too familiar. The excitement ended for me that day, when I realized that Santa didn't exist. I was mad and told my mother I didn't want the gifts, because I knew Santa didn't really bring them.

I wanted the kind of Christmas that you see in the movies....I had dreams of waking up to a houseful of delicately wrapped presents, and bows placed around the ones that were too big to wrap.

I wasn't aware of how much that hurt my mom. She was doing her best--giving everything she had to me. The next few Christmas' would be spent away from my mom. I remember how different life was with my dad and his new wife. We basically got anything and everything we wanted.

Christmas morning would come, and we would all run downstairs to find a room filled with gifts. We'd race and tear open the packages and it would all be over so quickly. I remember looking back on the Christmas' with my mom, and missing it so much.

Sure I didn't have the room filled with gifts, but I had a mom who tried her best and gave everything to me. She sacrificed and worked so hard. My mom was dealing with so many stresses. From Mike's multiple medical issues, to my own 8/9 yr old neediness. I didn't understand it then, but I understood it much better, when I saw how different Christmas' were away from her.

Over the years, I have learned, that it doesn't matter how big or small the event is, what REALLY matters, is who you spend the event with.

Happy Holidays
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Freaky Friday

The Fridays leading up to Christmas will have a posting of my favorite Christmas songs....done in a Weird...Freaky...Crazy way.

Oh Holy Night...

Thriving Thursday

Defective: Adj; Meaning: Imperfect form

"In Neurofibromatosis, a genetic defect causes these neural crest cells to develop abnormally. This results in numerous tumors and malformations of the nerves, bones, and skin." The Medical Dictionary

I know about Neurofibromatosis. I know how the Medical books define it. But when I hear the word "defective" or "disease", I cringe. I don't label myself as defective! "Defective" is something you take back to the store for a refund!

I refuse to wear that title over my head!

Having Neurofibromatosis is challenging enough, wearing a defective sign around our neck is not something most of us should have to do...certainly not me. Next thing you know, you'll be walking down the street, and some Southern guy with a flannel shirt will come up to you and say "You're defective - Here's Your Sign!"

I for one, have no intention being talked down to, felt sorry for, or defined by a 'Defect'. Call it a mutation (after all, my kids think I'm a super-hero). An alternative genetic alignment. But not a defect.