Pope Francis

When I first saw this picture and read the story, I KNEW I wanted to write about it...But I really wasn't sure what I could say, that hadn't already been said...It's a beautiful and wonderful story of true compassion and unconditional love.  If you haven't read it...Click HERE

Neurofibromatosis is often a cruel disorder, and since it is also progressive, it often feels like I'm just waiting for what will happen next. When I see the photos in the article, a flood of emotions overwhelms me. Although, not to extent the man above deals with...I understand the burden.

Scrolling through the photos in the article, I see a frightening transformation, that shows just how relentless NF be... And sometimes, I find myself wanting to crawl in my dark corner of this world and just hide from it all. 

The reality is too much for me to bear.  The "what-ifs" and "could-be's"

The truth is, I hate Neurofibromatosis with such a deep seeded passion, that sometimes....This blog, and the responses I get from it, are the only thing that keeps me from completely giving up.

I'm often called "one f the lucky ones", because I don't have all the large external tumors, and ONLY have hydrocephalus, a benign brain tumor, and minor cosmetic bumps all over my body that most people, other than me, of course, don't notice. That's all I have, at least, for now. Being "one of the lucky ones", does not bring me any relief...Because I know that the way I am NOW has nothing to do with how I will look in 20 years...which very well could be like the man in the photo....

And this is where THRIVING comes in.  It's not about just coping, and managing the complications with myself and the 3 of my 6 kids who also have NF....It's about something much more....Finding my purpose.

ME...as a person, am so much more than my appearance.  Anyone who knows me, knows this...And as much as I hate this disorder...It has also brought me to a place where, I know exactly what God wants from me.

I have my bad days--and REALLY bad days....I have days when I ask God "WHY?"  I am human after all.

But it's those days when I see LOVE IN ACTION.  Compassion.  Embracing something that isn't understood....And Making a difference...WOW.  This is where I find my inspiration.

THRIVE ON!

I'm No Orson Welles

After my radio interview was finished...I breathed a sigh of relief...."IT'S OVER!!" I said to myself as I walked out of the 12-story building...I felt good.  REALLY GOOD!

Radio is fun...The interview was easy...And...I met a new friend, who is oh-so-inspirational!

If you would like to hear the interview, you can click HERE

Talking about Neurofibromaosis comes easy for me....I live everyday with 'something new' popping up, and find a huge amount of joy when I can talk to somebody that has never heard of this disorder....OR....when I can help a grieving family through the process of a diagnosis.

But talking about weight....This is NEW territory for me, and I still have a hard time accepting my weight loss.

As I said in my radio interview....I have ALWAYS had to deal with my weight.  Being a "chubby baby"....."sturdy" child and just plain "fat" adult, I used my weight as just another excuse to hide behind.

I wasn't diagnosed with NF until my 30's....But, I really always knew I had it...And the weight, was just something to hide it....A way to continue to 'fly under the radar'.

After that crushing day, when NF was recognized by my OB, I had to face that diagnosis head-on.  Just like that day, when those nasty numbers popped up on the scale....Slapping me with the reality, that I was out-of-control, and in serious denial.

Almost 2 years later...I have lost 115 pounds (and still going) and have continued a THRIVING LIFE, by showing the world, that I am no longer hiding.

And while I am no Orson Welles, the whole process of being on the radio was AMAZING!

Thank you to Angie Austin, for the opportunity to share my story, my battle and my successes with your audience!

To Robbie-  I am so glad to have met you!  Congrats on your weight loss AND your book launch...I am looking forward to a long-lasting friendship!

THRIVE ON!

Wham Bam!

It's early.  TOO EARLY.  I'm sitting in another waiting room, while my daughter is getting her brain and spine imaged.  I'm used to this....I'm not pacing the floor, or even in the MRI room holding Bailey's hand.  I'm just here, wondering as the CRANKING and JARRING noises fill that room and images flash on the computer, what they are going to tell us.

For the last 9 months...We have heard the word "Stable"....No word sounds better...And no word has ever brought me such relief...Will we hear this word again today?  

I AM hopeful.  I HAVE given this to God....But....

When you are a mommy, who has a child that has something wrong  with them, there is NOTHING powerful enough, to take away the pain and worry...Not even God.

Then there is Braden.  Today...He will also be scanned.  His newly diagnosed eye issues will be closely looked at and imaged with an MRI....And the tumors in his back will also be checked.

This is over 4 hours of MRI-ing

Surprisingly - I'm not a mess.

It just is-what-it-is and we will take whatever news we get from today, 

and move forward in the way we need to.

This blog post will be updated--as our day continues

1:15 PM- 4 hours in the MRI and 1 hour driving
I got the kids something to eat....
DARN-
Bailey was supposed to fast for her blood draw-  We weren't told this, but should have known, since she has had to fast for every other draw.....But, she was hungry, and I just didn't think.

We are checked in and just waiting now...

Thank you for your prayers and support

THRIVE ON!

Halloween!

This is my favorite time of year!  The cooler weather, the changing of the leaves, the smells....Everything about Fall makes me happy. Especially....Pumpkin Bread....which I HAVE made, but have yet to indulge in.

I remember as a little kid, how excited I would get for Halloween.  My dad would get his make-up kit out and spare no expense when he would create scary costumes for my brothers.  I was fascinated watching  as my brothers would get bloody scars or fake nails through their heads...

For ME...Halloween isn't about the devil....or Pagan....or darkness.....It's about having ONE night, to go all out -- Dress up and have FUN!  Knocking on doors, getting FREE candy and seeing my kids get soooo excited, as they dump their pillow cases of candy onto the living room floor...(So that mommy and daddy can inspect "suspicious" looking Twix bars *evil grin*

Selecting costumes at my house is a seriously crazy event, which usually starts taking place sometime in August. :)  As my kids get older....The costumes get a BIT more complicated.....

This year, I am proud to present my children:

My poor ZOMBIE BRIDE

SALLY from 'Nightmare Before Christmas'

TINKERBELL or FAIRY.....She can't decide

Yeah....This says it all 

So, I am a Christian mommy who LOVES Halloween.  In OUR family the "bad" part of Halloween doesn't even come to mind.  We are just a bunch of goofballs out knocking on doors to get candy.  THAT'S TRADITION for us....Which I sadly see slipping away.

Last year, our neighborhood looked like a ghost town.  Porch lights off, and just a handful of kiddies walking around....It made me kind of sad.  One house....dumped their entire bowl of candy in my children's bags....because WE had been the only trick-or-treaters for them -- 

I miss the 'old days'....But for as long as I can....I will have HALLOWEEN -- I will decorate and dress up and continue to be the goofy mommy who goes door-to-door with my kids

BATMOM

Happy Halloween!

Thrive On!

What's Your Excuse?

Okay...I usually don't jump on the headline wagon, but this definitely got my attention.  

I read the thousands of comments, in response to her fitness ad, some calling her "selfish" and a "bully"....while others praised her. 

So, how do I feel about this and what's the point of putting this on my blog?  

Weight has always been an issue for me.  I was chubby being born, "sturdy" growing up and just plain FAT as an adult.  I hated (sometimes STILL hate) the *RAH RAH--I'm ALL POSITIVE - ALL THE TIME* stuff...And I have to admit that 2 yrs ago, I would have looked at this ad, and rolled my eyes, at yet ANOTHER health nut, rubbing it in, that I was just another lazy mom, who didn't care about her body. (I was)  My journey was too long.  I was too tired and angry at life, to feel good about ANYTHING!  And ANYONE who tried to tell me "If I can do it...You can do it" was just another thorn in my side.

I had my wake up call.  And it was a scary one...A year and a half ago, while Bailey was still going through chemotherapy, I stepped on the scale.   My "excuses" had gotten the best of me and I was shocked into reality, when those numbers showed up.  Not shocked really.  More like shamed.  I had done this to myself. And I was the only one who could do something about it.

Today, looking at this ad...Maria Kang is a champ.  A woman  who took control of an eating disorder...And worked HARD to get where she's at.  No where in her story or website did I see a "bully" or a "fat shamer"...

I see a motivator and an inspiration. ...I see a NO EXCUSES WOMAN.

My ENTIRE LIFE has been filled with excuses.  Those EXCUSES got me to almost 240 pounds and I was living a life that was depressing and shameful.  I was killing myself, right before my children's eyes...and I was setting an example that was saying it was okay to let "life's stuff", get in the way of what I wanted.

I am a mom of SIX children...All my excuses are legitimate and sound good.  I have a disorder that causes tumors and extreme pain.  I have hydrocephalus and a brain tumor...I have every reason, to just give up and let life do what its going to do to me....

I was/am dying in 10 different ways.

BUT...I have ONE THING I have control over...The ONE thing I could do something about...My Weight!

Forget genetics for a second....because - in MY opinion, that's just another excuse.  I know I will NEVER EVER look like Maria Kang....But that isn't the point.  She NEVER says, that women need to LOOK like her or BE like her to be healthy....She DOES say that YOUR LIFE is in YOUR HANDS.

My wake up call, was my second chance--

Over the last year and a half...The weight didn't magically fall off me.  I've been working really hard!  I FIND the time.  I FIND the energy.  I FIND the willpower....Even when I feel that there is nothing left to give...I dig deeper...And guess what I find?   MORE!

Finding the time to exercise with my son holding my feet..

with unfolded laundry on the couch, 'cause that's just the way life is

There are truly NO EXCUSES to find a way to get what you want.  That may sound harsh to some, but it's true.  If you want something bad enough...You have to find a way to get it.

THRIVE ON!