Monday, January 16, 2017

Hey Kristi...Where Ya Been?

I know I know.  It's been FOREVER since I have posted a blog.  The holidays....Work....Kids home for almost 3 weeks....My life has been just a WEEEE bit chaotic. Forgive me.

Medically were are in a bit of a lull.  A very good thing, especially with brain tumors!  But, our doctors are taking a very 'hands off' approach, which kind of makes me crazy.  They are supposed to know what they are doing....And trusting this type of treatment goes against EVERYTHING I believe in.  I want a FIX.  I want a CURE.  And I want it NOW!

MRI's every 3 months...And just believing that God has got us in His hands, is the best I can do.

Tumors are scary.  Trying to explain what's happening in our family, to someone who doesn't know the world of Neurofibromatosis is really hard.  

I say "tumor"....they think "cancer" (and yes, I know sometimes with NF, that's exactly what it means)  But generally speaking, NFers have tumors, that aren't cancerous...And that's hard for the average person to understand.

And NF isn't something you can talk casually about.  It's complicated.  Especially for me, living with it, and trying to explain it, while also remaining positive.  I usually get that deer-in-the-headlights type look...As if saying...."YOU HAVE A BRAIN TUMOR AND YOU'RE STILL WORKING...?"

Yes. Yes I do.  

I also have THREE children with various types of brain tumors.

This is OUR life.  This is OUR normal.

Speaking of work.  I got a promotion.  It's a good thing....That has forced me to stretch far outside my comfort zone....Something EVERYONE should do from time to time.  But it has also left me kinda...sorta missing my life BEFORE this job.  

I spend 9-11 hours away from my family....And I truly miss them.  For 2 yrs now, I've handed off all of the 'mommy duties' to my hubby...And he has done a fabulous job...But I long for THAT craziness.  My heart will ALWAYS be a stay-at-home mommy...And I hope that life will fall into making that happen for us again.

One of my New Years Goals is to become passionate about writing again....And eventually get my books out from the cobwebs, and published.  Managing my time, is not something I am very good at...When I'm working, there is -0- time for writing...When I'm home, I am exhausted from working...And when I have a day off...I just want to soak up every second of that time, with things not related to work or the constant medical demands.

Don't worry though....We are STILL THRIVING.