Wednesday, November 27, 2013

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. 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.


Sunday, November 17, 2013

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!


Friday, November 8, 2013

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....
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