Monday, December 17, 2012

Thrive Thrive Thrive

Thrive Thrive Thrive

As I write this, Bailey is laying in the other room undergoing yet another MRI - this time focused on her back.  
A few months ago, we discovered that Bailey has Degenerative Disk Disease.  "The back of a 70 yr old" our doctor told us, half joking. 
After months of failed attempts of physical therapy, it is clear that something MORE needs to be done.  But what?  We have been told there is no surgical "cure" for DDD.  Therapy has seemed fairly useless, and medications consist of narcotics, which I really don't want my 16 yr old to rely on.
Several Xrays later...We have learned that Bailey has several stress fractures, a few rotated disks and possibly the beginnings of Osteoporosis.  This...To go along with 2 inoperable brain tumors...And possibly a failing liver.

Me? I am sitting here thinking of ways to stay positive.  To focus on all the good that surrounds us.  There is SO much good.  I see the smile that seems permanently cemented on Bailey's face...No matter how much she is facing.

Finding the good is not easy to do in light of the news of Sandy Hook Elementary. I've spent the weekend crying over the many lives that have been forever changed by that senseless act.

Sometimes I let myself get a little too wrapped up in events like this-  I allow tragic events like the one on Friday....Or the trial for Casey Anthony affect me in really negative ways.   I wish I could rescue every little child in the world.  But then I hear the buzz/kachunk of the MRI, and wish I could just save my own.

"Thrive, Thrive, Thrive." 

I admit, it sounds silly. Pollyanna, perhaps. But when I close my eyes and silently chant this simple word over and over.  I feel better.  This word...Has become very important to me and my family....Especially when things aren't going the way we would like them to - which seems to be nearly every day lately.

People have told me "Sure, it's "easy" to THRIVE when things are okay with you and your family - you should try living MY life."  And yes, when the MRI reports are "stable", and the side affects of chemo are at a minimum, it IS easier.

 We haven't seen those days in months.

 Today I feel like I'm stuck in the middle of the ocean - trying to swim for shore, but with each stroke towards home, I'm slammed backwards by one wave after another - constantly pulling me back into the ocean.

I'm Exhausted.

Thriving doesn't always mean spending life with a smile on my face. That doesn't equal Thriving. Often it equals lying. Thriving isn't even knowing you'll make it to the shore. Thriving is CHOOSING to keep swimming, to stay above water anyway you can. It can mean resting and floating for awhile. It means never choosing to just sink and drown yourself in sorrows, pain and fear.

I work to be a lighthouse in the world for NF, and a life preserver, or at least a piece of driftwood, for my family to hold onto as we go through this current pain. Perhaps, if enough of us band together, we can build a boat - and even if we never hit shore, we can party together through life.

Just keep Thriving. 

Dori :D


  1. Wow. Just WOW. Kristi your spirit is admirable! YOU ARE A LIGHTHOUSE -- You will be rewarded for your strength!

    All my best!

  2. We will be here to pray for You all. Your family is an inspiration . God be with you.

  3. I keep the "Just keep swimming" line running though my own head myself. I know this has been a very hard week for you (from Facebook) and as a nation we have all been hit hard on top of our daily struggles.