Wednesday, August 23, 2017

Whew. It's been a WHILE!

It's amazing how fast time goes.  Sometimes, it feels like a sneaky little thief.  I blink...And its gone.  Chunks of time.  

I'm worried today.  For the past several years, our oldest son has been receiving Social Security Disability.  He has visual issues, due to a Optic Glioma caused by Neurofibromatosis, severe cognitive deficits and also has spinal tumors that cause back pain.  He 'QUALIFIED' for disability...with LESS issues -- 

But today...I have to fight to try to keep his Social Security benefits, because the system thinks that since these issues have remained "stable" --- He's fine...and doesn't need assistance anymore.

Let me tell you how "STABLE" works with Neurofibromatosis....Bailey, my oldest daughter had a "STABLE" brain tumor while ON chemotherapy....3 months later...That tumor DOUBLED in size!

I have a friend, who has a child on disability....This child's vision was COMPLETELY taken from him - while the tumor remained "STABLE"

I get so frustrated with the system....And how this system can tell me my son "no longer has a disability"....God...I wish!

sta·ble1
ˈstābəl/
adjective
  1. (of an object or structure) not likely to give way or overturn; firmly fixed.



In the world of Neurofibromatosis....Nothing is "stable".  Nothing is "firmly fixed".  Today...I will try to get the system to learn...Try to get the system to see...But in the end - it's up to them.

I know there are those out there who think - if he's stable, he shouldn't be on disability, and that's fine....but there is no way to secure a future for my 19 yr old son.  He can't hold a job that would support himself....And will most likely be living with us, his entire life.

I'm fighting to help give him SOMETHING to rely on....Insurance mostly.  Those of you living in the world of Neurofibromatosis know, that insurance is the most important thing...without it....God -- I can't imagine -

Bailey's chemo treatments...were in the MILLIONS of dollars.

We shall see.  I will update when the system decides

Monday, April 3, 2017

You Can't Wash Away the Cafe Au Lait



Several years ago, after our families diagnosis of Neurofibromatosis, we had a choice to make.  Run from it....Like my own mother did....Or LEARN from it.


One night, I was sharing in the bath-time fun with my daughter Rachel.  She had just come in from outside, and was dirty from head-to-toe!  With the bubbles over-flowing the tub, we began to scrub the dirt.
We laughed because the once clean water, became dirty.

After filling the bathtub back up with fresh water and LOTS more bubbles, Rachel noticed the brown spots all over her body.

This was the first time Rachel had asked about the spots....AND the first time I really ever had to explain them to ANYONE.

She tried to wash the spots off with a washcloth and asked why she couldn't wash them away.

In that moment, I knew I wanted to write something about NF....This blog...The book Thriving with NF....And MORE!!

I explained to Rachel, in a simple way....."Those 'spots' are called Cafe' au lait, and you can't wash them away...."

After drying Rachel off, and getting her tucked in for bed....She asked more questions about NF....So sweet -- so innocent.


The IDEA for a children's book was born that night.  I wanted something short, sweet and positive.   But mostly, easy to understand.

If you are interested in "You can't wash away the Cafe' Au Lait" please go: HERE
The link will take u to AMAZON, where u can download a copy.

Follow little Sammy, as she learns to live with Neurofibromatosis.  

Thrive On!!

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.