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.



  1. Wow! Beautiful and inspirational words.

  2. Hi! I follow your blog because I too have NF. I have three kids and my son has NF. I too struggle a LOT, EVERYDAY with NF. Not knowing what I will look like in 20 years does scare me because I have seen such a big difference in just the last eight years and I am afraid of how much "worse" it will get. I feel your pain. Just letting you know that I feel your pain and I appreciate your blog.

    1. Thank you for your comment. I wish for NF to stay calm and for there to be no complications for you and your son.