Monday, December 30, 2013

I Resolute to NOT Resolute

10 Reasons I Don't Have New Year's Resolutions

  1. I am a DO-ER.  I have learned that ACTIONS speak louder than any words I could put down on paper.  Making a list of things I want means nada to me.
  2. I live my life "In the moment", so my CHANGES....happen NOW.
  3. While GOALS are great to have....Year-Long plans of actions just don't motivate me.
  4. Did you know that the Journal of Clinical Psychology says that only 8% of those who make resolutions, actually stick to them...?  I refuse to be in that 8% - 
  5. LOSING WEIGHT....Is the top resolution ever.  It has been on my list of things I wanted for over 30 years.  And...The ONLY time I have actually accomplished this goal...Was when I decided to stop making it a YEARLY resolution!
  6. The pressure of making New Year's Resolutions make me feel like crap.  Going into a New Year is awesome...and I have hopes and dreams of it being 'the best year ever'....But lists and plans, make me feel like I am setting myself up to fail- AGAIN.  I stick with daily goals.  Daily plans.  Daily Intentions.
  7. Resolutions are typically unrealistic - I am a mom to 6 kids and live in reality.  I will not make a list of unattainable expectations.  "Being a size 4 by February" or "Getting to 120 pounds".  Nonsense. 
  8. In MY past...Resolutions have been about taking away something...or doing LESS of something.  Negativity will NOT be a part of my life anymore-
  9. Instead of having a resolution to BE BETTER/DO BETTER....I celebrate that I am already there.  I celebrate the progress I have made.
  10. Loving myself just the way I am.  While having intentions on doing more things that ADD, not take away--SOLUTIONS....Not resolutions are my hopes for 2014!

Friday, December 13, 2013

Sarah Atwell


When you're different.  Really different.  Life is hard. When people see anything that isn't "normal"...They judge.  They stare.  They wonder.  And that's okay.


What happens after that curiosity is what really matters. 

I have a few blog posts here about bullying.  Heck...I even have a chapter in my book that tells my bullying story...The impact bullying has had in my personal life is immeasurable, so when I see or hear of stories of triumph...I want to scream from the rooftops!!!!

Sarah Atwell...

 Like me has Neurofibromatosis.  She has a tumor on her face that distorts her features.  She is a beautiful girl, who has endured unbelievable cruelty.

I was one of the thousands of people who view her video about how she felt about living with a disorder that you can never hide from.  I cried while I watched ...and smiled when she let her strength show through her own tears.

You are a hero!  Finding your strength and pushing back, has gone on to inspire so many people!  I am so proud of you.  Your strength and spirit inspire me!

YOU are what THRIVING is!

Starlight Christmas 2013

Starlight Children's Foundation is a non-profit global charity that partners with many different companies, to help improve the quality of life of families going through medical crisis, or facing life-long medical challenges.

Our family joined Starlight almost 3 years ago and we have been so blessed to be a part of such a wonderful organization, that truly cares and seems to understand how important it is to shake off all of the medical worries, take a night off....and just have fun!

We drove downtown to the amazing Sherman Event Center and our family was greeted by some cheery volunteers - who showed us to the party....The kids ran ahead, so excited.

Brooklyn refused to sit on Santa's lap.  She kept saying "He isn't real...He isn't real"...
She told me that Santa was like Jesus...."He lives in your heart...and makes you feel magical."

I couldn't argue with that, so we just enjoyed watching as the other kids hopped on Santa's lap.

Each of my kids got a special gift, marked with their names, which we took home to put under our tree.

The amount of love and detail put into the Starlight events truly make me feel blessed.  We are able to allow our guard to come down, and just enjoy an evening out as a family...Not worried about how much money we are spending (Starlight covers all costs), or having someone feeling left out.

Thank You Starlight, for helping to make our family feel so loved!

Tuesday, December 3, 2013

Eye Issues with Neurofibromatosis

One of the most common signs of Neurofibromatosis is Lisch Nodules.  These are harmless/benign "elevations" of the color parts of the eyes (the Iris) and a key diagnosis factor in people with NF.  Basically, we have been told that Lisch Nodules are "birthmarks", that have no affects on vision and require no treatment.

Our NF doctors are awesome, don't get me wrong...And were telling us, that it is "highly unlikely" for a child to develop Optic Nerve tumors after the age of 8....And that MRI scans would no longer be necessary...UNLESS, something showed up in the eye exams....

Braden has had yearly eye checks, even before his NF1 diagnosis in 2007.  We were doing exactly what we needed to do, and Braden, to this day, still sees 20/20.

However, during our routine - yearly eye visit 2 yrs ago, the doctor notice "inflammation" in Braden's left optic nerve....

This alerted our Neuro-Oncologist, sending Braden in for an MRI.

It had been about a year since his last MRI (which came back with results as your typical "NF Brain") Click HERE for more on "NF Brain"

I wasn't really sure what I was expecting...We were dealing with Bailey's chemo and I just assumed that the findings were going to be no-big-deal.....But, when I got a call from the doctor before we got home from our drive from the hospital...I knew SOMETHING was wrong.

"But...You told me we didn't have to worry....You told me......"

I was side-swiped

At 14 yrs old....After 2 "normal" MRI's...Braden was diagnosed with an Optic Glioma.  Treatment would depend on his visual exams....Which, thankfully continue to be normal.


It's THESE exams, that come every 3 months, that went on to diagnose a NEW problem.

After dilating....Our AWESOME doctor noticed issues with Braden's right eye.  I knew something was going on, after the doctor took an extra long time looking into Braden's eye....leaving the room, and coming back with TWO other doctors.  Specialists.


One doctor quickly rattled off some really long diagnosis, and left me sitting there.  WAIT.  WHAT?


Braden's right eye has something called a "Combined Harmatoma of the Retina and the Retinal Pigment Epithelium".....

I know right...?  What is this in ENGLISH!?

Basically a tumor that is too far back to be an optic glioma....and too small and in an area that MRI's can't pick it up...But can greatly affect vision, especially peripheral vision.

Eye issues are very common with NF...And with routine exams, most issues just have to be monitored.  The "wait and see" is just the way it goes with NF...Frustrating?  Absolutely.  But as I look into my sons eyes...I see a boy full of future...Full of Love....Full of Spirit...And full of Vision.

Thrive On!