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!!

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.  

Thriving Takes Action

As a human being, it's easy to focus on the negative things in life.  I mean let's face it, life is HARD! And sometimes, life is unfair.

I didn't grow up as an overly optimistic person.  In fact, there are times when I think I am hard-wired to be a frustrated- angry woman....Just like my mother.  (There are even times, when I actually think, that way of life would be easier)

I have to work HARD....REALLY HARD sometimes to push out all of the negative - toxic feelings I have.

I got this e-mail from a father, who is having a very difficult time accepting the diagnosis of NF for his 3 yr old son.  He's angry (I understand) And he can't see the good in anything right now.  His words "I feel hopeless".

I feel this way too.  I sink into despair.  The amount of guilt I feel sometimes, when it comes to NF is unbearable.

But then what...What do I do with all those emotions?  Where do they go?

Those emotions - ALL OF THEM - are inside of me.  They are real.

But they transform into the energy I need to push myself forward, instead of allowing them to swallow me into a pit I cannot get out of.

HOW?  It's a very deliberate effort.  I recognize what it feels like....And what it looks like when life's "Stuff" starts to take its toll....And I know that everyone around can feel and see it too.  So...I make a choice.

It's like that saying-
"Whenever you do a thing, act as if all the world were watching". Thomas Jefferson

Positive thinking engages ALL me.  It puts ME in the drivers seat.  Puts ME in control of MY life.  And when other people notice - and recognize my efforts, it just makes the NEXT time I am facing a difficult situation, a little easier.

"THRIVING Takes ACTION-  When you CHOOSE to TAKE ACTION...Instead of letting life act upon YOU....That's when you THRIVE!" - Kristi Hopkins

THRIVE ON

Why Did God Make Me Ugly?

I was emailed a question a couple weeks ago from a woman suffering an extreme form of Neurofibromatosis.  Attached was a photo.  In the e-mail she asks the question..."Why did God make me ugly?"

How do you define UGLINESS?  For me, when I think of that word, it doesn't have anything to do with appearances.  Ugliness is an action.  Same goes for the word BEAUTIFUL.

When I looked at this woman's photo, I didn't see ugliness.  I saw strength.  But I definitely connected with how she feels.

She asked me questions about how I feel about having NF...And if my love life has suffered.

"My husband doesn't love me anymore.  And I find myself pushing him into an affair....Maybe then he will be happy."

My heart broke for this woman, and I have been struggling with how to respond to her....which probably also can explain my hiatus from blogging.

I tend to run from things that make me uncomfortable...And NF, despite my show of bravery on-line...Does make me uncomfortable to talk about.

It's mostly because people just don't get it.  To them, tumors mean cancer....Cancer means sick...Sick means death....And death means sympathy....Sympathy means pity  etc etc etc....

NF is not something that can be talked about casually.  It's complicated, and goes beyond, 'bumps on the skin'.

The thing is  I find myself asking God 'why' a lot.  Why do I have to deal with this?  Is this a form of punishment?  Why do I have to be strong?  Why won't God just wiped this disorder away?

My NF 'isn't THAT bad' right now....But what's going to happen in 5 yrs? 10?  20?  Will my "THRIVING" turn into frustration, anger and bitterness?   Will I be asking if I am still worthy of love?

Honestly I am scared to death of this happening.

But for now...I am trying to build myself up to be strong.  Build up the people who are around me to not judge...But instead LEARN.

I hate that the woman who emailed feels ugly...And feels like her husband doesn't love her.  My advice is to sit down and talk about this.  People fear what they don't understand....And maybe its just that the husband is scared.  So he pushes away.

It's easy to run.  It's hard to face reality.  It's hard to teach.  But in all those things that hard...When we face them....We grow.  And we can grow to love ourselves....Once we love ourselves....Others can start to love us.

THRIVE ON-

What's Next?

I had no idea that I would be able to love something that scared me so much.  Speaking in front of large crowds was my hubby's thing....NOT MINE...And I was always safe in Rich's shadow.

But...
Telling my story...And helping to encourage others has become the most important thing....And I have found that the more I do it, the more my fears just slip away.

I want to do this more.  Get out there and talk about Neurofibromatosis.  It's a necessity!

2016 is going to be filled with speaking opportunities...And I am so excited for this!  The more we talk about Neurofibromatosis...The more people will accept and understand this condition!

What do I speak about...?

THRIVING!  My message is positive and uplifting, even while addressing serious complications caused by NF.

I speak about being a mother of 6 children, 3 of the children having an NF diagnosis...While also managing my own medical needs, having NF.

Living a life that is fulfilling and meaningful is something ANYONE can do!

If you or someone you know is looking for a speaker please contact me:

kristi.hopkins@gmail.com

Giorgio Foundation PART 2- The Speech

I love the advice people get when speaking in front of a large crowd.  Being married to a professional speaker, I think I have heard it all!

Honestly, I think picturing the crowd in their underwear is good advice...The part where Mr. Brady says that it helps the speaker realize that the people they are speaking to, are human, just like them makes sense.

I didn't have time to picture THIS audience in their underwear....I was too focused on not falling on my face. :)

The speech was about my own diagnosis....How I choose to THRIVE, through all of the uncertainties...All of the fear....All of the anger....How I go beyond just 'living' with NF.

For me, I felt empowered on stage.  Looking out into the crowd of several hundreds of people, did not scare me (I was shocked by this)  Instead it made me feel like I was doing EXACTLY what God put me here to do.

All I wanted was to tell MY story.  Impact ONE person.  And leave an impression on people that NF is just PART of who I am.

It was such an honor to be a part of this wonderful event...I was made to feel like an honored guest and for that I wanted to thank EVERYONE involved.  Especially the Borzellino family!

Me And Giorgio at the 2nd Annual Giorgio Foundation Fundraiser

Click HERE to Learn More About The Giorgio Foundation!!

Giorgio Foundation Part 1

When I am asked to speak about Neurofibromatosis....There really is no hesitation to saying YES.  It's my thing.  I feel great doing it...Even when the nerves are overwhelming.

This last speaking engagement was awesome.  I met Erin through e-mail, after she reached out to me to tell me she had read my book.

Erin and her family are dealing with a diagnosis of NF in Giorgio, who is almost 10.

I was asked to come out to speak at their event and I could not have been more thrilled!

It's ALWAYS an honor when someone reaches out to me, based on my story, and how I choose to live my life, even while facing the uncertainty that comes with living with Neurofibromatosis.

So now that I had been asked to speak....I needed to get moving on my message!!

My message always revolves around THRIVING with Neurofibromatosis....But I Tweak it, based on who I am talking to....

This is when being married to a speaking coach pays off BIG TIME!!

Rich helped me fine tune my message and even got me to attend a Toastmaster meeting to practice my speech in front of a live audience!

I have to say....The more I do this speaking thing....The easier it gets, and the more confident I become!!

Erin and her family invited me to their home in New York, which was so warm and inviting...I felt right at home!

The next morning, we all took a private plane to Pennsylvania

I had so much fun playing games with the kids during the flight  :)  And they were a good distraction for me, since I was scared of the whole "private plane" thing. :)

I was able to see where the event was being held....And where I'd be standing to give my talk.  It was a little intimidating.

 But I did it.  It felt GREAT!  This was by FAR the largest crowd I have ever been in front of!  Having people come up to me after, was the best part.

The whole even was a success - And raised over $200,000 for NF!  I was so happy to raise awareness for Neurofiibromatosis, in a positive and encouraging way!

Thank you Borzellino family for inviting me into your home and your hearts!  It was truly an honor to be a part of something so successful!

Please stay tuned to PART 2....Where I will talk more about my speech....And what this event was all about....I may even post a video!!

Speaking of Neurofibromatosis!

So, after a WHOLE LOT of convincing attempts from my hubby, I finally downloaded Periscope. An app that I knew very little about, but thought I would play around with it, to see what all the fuss was about.

After watching a few live streams...I wasn't so sure this was for me.  I mean, I am ALL for walking your pet turtle with a leash...And watching live feeds of people brushing their teeth...But it all seemed a little silly to me.

That is, until my hubby helped to record my OWN live stream.

You can check me out on Periscope by searching for NFMOMMY.

Let me know what you think...And comment with some ideas!  

I would love to Periscope once a week (or so) and talk with others around the world that are living with NF...Or those who are just curious about what it is like for someone living with NF.

Talk to me.  I'm listening!

Monday Vlog!

Two down -- More to come...

Today I used my web cam on my computer....Not liking it at all!  Not sure what's up with the lagging and choppy-ness.  Blah.
But ....I am posting anyway....This way I can see the progress I make, as I get better at these! :)

The OCD part of me wanted to just delete it and start over.....So this is a BIG thing for me!!

Please comment and give me some more ideas --

Video Blog Monday!

2015 has gotten off to a very busy start....I have so many goals for this year!  One of those goals is to get myself out speaking about Neurofibromatosis...So to kick that goal off, I wanted to start a weekly VIDEO BLOG!

I've done this before...But "things" always seem to get in the way -

Please respond as to what you would like to see in my video blog....Any questions you have? I need IDEAS so that I can keep this going :)

The Home Stretch

The contest for the Atkins All-Star ends today....It's silly, I found myself refreshing the vote page over and over....Just HOPING that this would be a slam dunk.  That I would have thousands of people voting and I would sail across the finish line--Trophy in hand....

My husband is competing in a contest too.

He....RIGHT NOW is a half a world away, taking part in THE WORLD CHAMPIONSHIP of PUBLIC SPEAKING....

And...From him I have learned a very valuable lesson. (I listen honey...Even when you think I don't)

Is it THE "TROPHY" that matters?  Or is it the message that is being delivered?

My story has many UPS and DOWNS.  It has kinks and bumps(literally) And I am far FAR from perfect.  But this "voting process"...and the messages and comments I have received from the people voting for me has been so eye opening.

So what if I don't win the ULTIMATE GRAND PRIZE.....!?  Sure donating to CTF would be AWESOME....But I know that I put myself out there...Did the very best I could...And I have shown people that taking back control is possible...EVEN when the odds are stacked against you.

This journey has shown me that my story has touched people....And IF I don't win this contest....I am NOT DONE making my mark on this world!

THRIVE ON!!!

And Vote! 

VOTE HERE

More About This "Contest"

Have you ever wanted something so badly that you would do almost anything to get it?

2 1/2 years ago, I was desperate.

My life then was about just surviving day to day.  Weekly chemotherapy treatments for my oldest daughter had me spinning.  Wondering what the next MRI scan would tell us.  While - at the same time, trying to keep some sense of normalcy for the craziness at home.

Worry--Guilt--Anger--Sadness--Fear

Comfort food made Bailey and I feel better.  Plus it was EASY to just go through the drive-thru on the way home from the hospital....And not-to-mention, it was "our thing"....A kind of celebration, for making it through another blast of chemo.  As long as Bailey was feeling good...I figured, why not feel good together...?

But - It was one comment made by Bailey that would go on to change everything....

The chemo bag hung over us, like a looming, dark cloud.....

We were both scarfing down the room service Chili-Cheese Fries that were delivered and watching cartoons...When Bailey looked over at me and said....

"Mommy....When I die....I want you with me."

Good grief.  I choked on my mouthful of fries....Almost unable to breathe or move.

How does someone respond to that...?  At THAT moment....I realized that I was facing TWO death sentences in that hospital room.

What was I doing to myself...?  To Bailey?

The plate of fries, that was resting on my ballooned stomach was mocking me.

I doubt that Bailey had any intention of believing I would die before her....Or the cause of that death being from obesity...She was just making a simple statement of wanting her mommy by her side, every step of the way....

But it was THAT MOMENT. THAT DAY.  That I woke up!

That next Sunday happen to be a WEIGHT LOSS CHALLENGE that our church began... I stepped on the scale....

Fast Forward to today....

Low-Carb/Atkins has changed my life....And brought me 117 pounds lighter!  Waking up - meant I TOOK CONTROL. I TOOK ACTION.  The 'something' I wanted so badly began to happen....It transformed me!

My excuses...Became completely worthless.  

I took on what it truly means to THRIVE....I feel it now....More than I ever have before.

Readers....I am asking a favor....

Atkins has this wonderful contest that I entered....Which means, if I win....My story will be spotlighted - for millions to see!!  I get excited just thinking about it!

What if....Someone - who faced all odds.....Who had EVERY excuse in the book.....Someone who is living with a life-long, progressive disorder SWEPT this contest!?  For ME...It's much more about winning prizes....But a CHANCE to show the world that NO MATTER what a person faces, ANYTHING is possible!

That's where YOU come in....

Please click this link (HERE) PAGE 10 (it changes)

You will NOT be spammed - or asked to sign up for anything.

If I win...I promise to do Neurofibromatosis....And all those who are dealing with this disorder proud!

Please share...and vote daily (Until August 18th)

Thank you SO much!

Readers....I NEED Your Help!

Maybe some of you are tired of hearing about my weight loss journey....But it has seriously been a HUGE part of my life over the last 2 1/2 years.  

Losing weight has re-focused me.  It gave me CONTROL over something.  It has put me back on the path of having the THRIVING attitude I needed!

Saying that.....I entered a contest.  I NEVER --EVER enter THESE kinds of contests.....Mostly because it puts me in the spotlight ....And I really don't feel comfortable there.  My tumors aside...I'm a pretty quiet--keep-to-myself type of person....Crowds and attention aren't MY thing...BUT....I WANT THIS!

I have been doing low-carb (Atkins specifically), joined an AWESOME Kickboxing class....And kicked things up at the local gym.....This has literally made me HALF the woman I used to be!  Shedding over 120 pounds...And making me healthier than I have ever been!

I've changed my life.....And this is where YOUR HELP can do something AMAZING......

If you CLICK HERE You will be taken to a website where I submitted a short version of my journey....There are hundreds of others who have also participated in this contest.....So I need all the help I can get!!!  I am on PAGE EIGHT Right now :)

All you have to do is click the above link...And VOTE for my story....THAT'S it!!!  I promise you will not be spammed...Or asked to join any list....Just click and VOTE!!

Thank You SOOOO MUCH to those who have continued to support me!!  This wouldn't be possible without you!!

LaLaLa....I Can't Hear You!

"Talk Bailey.  TALK.  That's why we are here...." But she wouldn't.  Or couldn't....And no amount of nudging or prompting was going to work.

Hmmph!

Bailey is 18 now....So, technically I didn't even need to be in the room today.  But...in almost every way....Bailey is not 18.  She still needs me there.  Asking questions and advocating for her needs.

I'm not sure if it's a coping mechanism...Or just the way Bailey is wired.  She RARELY speaks when we are at the hospital....Even when doctors TRY to engage her, she often just "unplugs" and drifts off to....somewhere.  But, get her in the car afterwards....and she's back.

I never shame her for this...Because this is who she is and trying to force or move her into being more "normal" would be a futile effort anyway.

Life with Aspergers is complicated.  Life with Neurofibromatosis AND Aspergers, even more so.

Is it the learning disability that is making it so the Aspergers is more noticeable....?  Probably so.  At least in OUR CASE.

Call it an inability to cope....Lack of understanding....Or a combination....Bailey definitely knows about her medical issues...But as you can see from a very dusty blog of hers (BLOG)....She doesn't like to talk about it....or write.

While it may frustrate me - That my daughter, whose mother could talk all day about the drama of our very busy life...I get it.  If I were Bailey....I'd probably want to UNPLUG too.  The drama and seriousness takes MY breath away....I can't imagine what it would be like being 18, dealing with all that Bailey has on her plate.

If you ask Bailey if she's HAPPY.....She will smile and tell you "Duh...Of Course!"

So ... I guess THAT'S what matters!

THRIVE ON!

MY Review On A Book Review

Today - I wanted to address a book review that someone left about "Thriving with NF".  This review caught me off guard for a few different reasons....First, and most obviously, because it basically trashes me.
I have gotten my share of hate mail, but this went on a personal attack level, that made me feel that either this person is just so angry at life, that anything positive just pisses her off.  Or that maybe she just feels the need to personally attack people trying to make a difference.

Secondly, it seems like this person failed to realize that this was just a glance into my life....And how NF affected ME...My book wasn't written for educational purposes at all.

You can read the review directly by clicking HERE



(Quoted from www.goodreads.com)
"As someone with neurofibromatosis I can say with some degree of certainty that this book is pathetic. The author claims to be "thriving" with NF. In my opinion it is a pathetic plea for sympathy. I have the condition too. The author was either too lazy, too selfish or just too pathetically stupid to take the time to research her condition. Even after passing this gene on to her children she took very little time to become informed about the condition. She neglected to learn or mention that the gene for NF is a dominate gene and that she sentenced half of her children to a life of uncertainty. No mention was made of the way it can affect a persons life. No attempt was made to educate the general public on NF.
If you want to actually learn about NF I suggest you go to the website CTF.org. You will actually learn something there.

She seemed to revel in the fact that NF was a condition that qualified her child for a free trip to Disneyland. 

The book is only as good as the author. In this case pathetically stupid."

-------------------------------------------------------------------------------------------------

Let me address the fact that I don't ask for ANY sympathy.  I simply told my story, in hopes that it would make people feel less alone in the world of NF.  Growing up, for me, NF was a curse word.  It was what my brother had...and it was what tore my family apart.

This reader - didn't seem to understand that as I grew up....My symptoms were ignored.  I saw MANY doctors throughout my life that NEVER ONCE recognized that I had NF.  In fact I gave birth to 5 babies before ANY doctor mentioned NF!

"Lazy, selfish and Stupid"....?  Call it what you want.

AFTER MY diagnosis and finding out that 3 of my 6 children had NF.....I TOOK EVERY SINGLE MOMENT I COULD TO BECOME INFORMED ABOUT THE CONDITION!

My book....WAS NOT an education tool about NF....Instead, it was a look into a life where NF snuck its way around....Affecting me in ways that went undetected, until I became an adult.

"No mention was made of the way it can affect a person's life".....?  Excuse me?  The ENTIRE book was about how if affected someone's life!   For MANY....NF isn't diagnosed at birth...or at 2, 3 4 yrs old.  This was a BIOGRAPHY!

To the person who left the review,

I am sorry you felt the need to personally slam ME for living a THRIVING life.  I am doing everything I can do, to live a positive and fulfilling life....and also give my children the opportunity to do the same.  

Yes....I LOVE the fact that our family got to go on a trip to Disney....Not BECAUSE of NF, but because it gave our family the opportunity to make memories together, that didn't include Drs, or MRI's.

I take full responsibility for bringing children into this world that have a medical condition.  I am teaching them to be strong- positive people who understand what NF is....Since I was never given that by my own parents.

I agree...If people reading my book want to know more about NF, that they research it through other means.  AGAIN-My book was never intended to be an educational tool.

I hope you find a way to be happy in your life...BUT- don't BASH people who are already doing it!

THRIVE ON!

NF Clinic

We were totally prepared for a long day.  We packed a lunch and some snacks and headed out to Aurora for our yearly check-in with the genetics department at the Children's Hospital.

We are PROS when it comes to these appointments...We know that there will be A LOT of doctors and A LOT of questions.  I am so happy that I was able to get all 3 kids in - the same day!

Our morning got off to an early start with ALL 3 kiddos receiving eye exams.  These aren't your general, walk-in type exams....The doctors here specialize in early detection of Neurofibromatosis complications. Since about 40% of people with NF have tumors called Optic Gliomas, yearly exams are very important.

Out of my 3 NF children--One has an Optic Nerve tumor.

The exams took a couple hours, since we had to dilate --  

I noticed after we left the Eye Clinic that Braden's eyes showed something weird.  One pupil was large, the other had gone back to normal.  So I called the eye clinic and they told us to go back over, just to make sure everything was okay.....

And it was.  The DR told us that this COULD have something to do with Braden's Optic Glioma....The eyes returned to normal within a few hours.

After lunch, we headed to the genetics clinic.  It was a revolving door of doctors. 

During our time at the clinic- I got to meet the president of the Colorado Chapter of CTF.  She came into the room and shook my hand, telling me how excited she was to meet me.  This totally threw me off...But it was pretty awesome.

She knew all about 'Thriving with NF' and my book....And she asked me to come to some of the events that are coming up, to promote and sell my book.  This was a bit of a head-rush type of thing...And really made my day. :)

I also got to meet another family dealing with NF.  Life sure got put into perspective (again) when I saw their faces and met their young son.  It scares me to know that NF can be so unpredictable in how it affects people.  This family seemed so defeated.  

They were happy to have met me....But I left them feeling like I should have done more for them.  I don't want to come off as someone who is totally living life with no worries...Because -trust me, I HATE NF as much as anyone who is dealing with it....But I felt this feeling in my gut....That I need to be doing MORE!

I sit behind the comfort of my computer...And write.  I tell stories about our NF journey, that HOPEFULLY helps people feel less alone....And maybe - Just maybe helps to change someones attitude about how they act/respond.

I don't know...Maybe it's time to be more OUT THERE...Get in front of audiences and groups that want to hear about HOW I came to THRIVE with NF.

I've done radio, magazine interviews and have even done a keynote -- and I LIKE how that makes me feel...But I have never really considered myself a "Speaker"...(That's my hubby's job title)

Maybe it's time I change that about myself.

THRIVE ON

Enough is Enough

Enough is Enough!

I quietly walked into my two younger girls' room, to kiss them goodnight. I managed to make it in the door, past the closet, when it happened....

My feet got tangled up in the mound of dirty clothes and I did that crazy dance, to try to keep myself from falling over. I grabbed at the closest thing I could, which happened to be a hanger, that was attached to another, then attached to another, that was hanging from the closet rod.

SNAP!!!

The hanger broke and I landed in a pile of Lego’s...Actually think it WAS a castle, that was now crumbled beneath me!

As I steadied myself, I looked around my children's bedroom and realized I have lost all control. For WEEKS I had been telling my girls to clean their room. I'd threaten them with “CLEAN YOUR ROOM OR I'LL THROW EVERYTHING AWAY!”

But they knew that I would never do that.

The next morning...I laid it out. I gave the girls a time limit. “Two hours to get your room clean. If it is not clean, I will go in and bag up the remaining stuff.” They said they understood...and went to work.

An hour went by and I checked on their progress. The girls were making none. Arguing and complaining. I reminded them of what would happen if the job was not done.

(My girls are 10 and 5 and have been shown HOW to clean and put away...they were perfectly capable)

After the two-hour time limit expired....I opened the door to the bedroom, and saw that nothing had been done, from the last check-in point.

I knew that follow-through HAD to happen!

I went into the room with two kitchen sized trash bags and began to put in everything that was on the floor. The contents FILLED both bags. My girls were crying and very upset. To them...life was over.

The TV and computer were probably the most traumatic losses.

“What are we going to do now....?” my girls cried.

My hubby and I held our ground.

When bedtime came around, we sent the girls to their room SURE that there would be some kind of trauma from not having cartoons to watch....But instead....Laughter and excitement came from the emptied room.

“This can't be good...” I said to my hubby

I went down to check on what was happening and found my girls playing this game.....My 10 yr old was holding a drawing she made, of a Wii remote...While my 5 yr old was standing being a cut out frame they had made....

“We're playing the Wii Mommy!”   Brooklyn is pretending to be the game, and I'm controlling her...I laughed with them and told them how creative they were.  An hour ago, life was over....And now....They had come up with a creative way to solve their problem.

That's what I love about my kids. Despite all the complications of NF and life with six kids and yada, yada, yada - they remind me to step back, accept the situation, and find a creative way to handle it. To Thrive.

Thrive On.

(The girls have been slowly earning back their toys, as long as the room stays clean...And I have been impressed...No stumbling, fumbling, or falling has happened to me since)

Happy Halloween?

I always look forward to this time of year.  The changing of seasons brings me to a place where I feel good.  Hopeful even.

Halloween has always been a favorite of mine...Knocking on door after door....And being given FREE candy?  Who wouldn't like this?!

As a kid, my older brothers were responsible for making sure I I didn't get lost on Halloween night... And we'd stay out for HOURS.  Our pillow cases stuffed full of candy, by the time we returned home...Where we would then dump our stash all over the living room floor and play the trading game.

M&M's for Snickers bars....Tootsie rolls for Milk Ways....

We didn't worry about strangers....And in our childhood world, life was pretty safe.  It's not that there weren't bad people, who did bad things...Because everyone knew those people were out there...But in our minds, we were untouchable.

I have become fairly invested in the story of Jessica Ridgeway.  The 10 year old girl who was snatched while she walked to school.  She was murdered....Then dismembered and tossed away like garbage.  Jessica's story hit our community hard....and continues to.

She could have been ANYONE'S child.

This senseless act has made such an impact on the community that this Halloween was different than any other I have ever experienced.

I KNEW that we were going to the do "traditional" door-to-door thing...To me....Life will always have bad in it.  It's not like I walk around completely ignorant.  But I refuse to allow all that bad, stop me from living life.

Last night, my kids and I walked our neighborhood and I felt so sad as I looked around at the empty streets, and darkened doorsteps.

The handful of houses that DID have their lights on, acted surprised when my children excitedly ran up and knocked on their doors!  So surprised, that MOST gave out handfuls of candy. (which of course, my kids accepted with no problem)

Is it that people don't want to move on?  No disrespect meant at all....But LIFE has to CONTINUE!  If it doesn't....What a waste!  I refuse to live my life in fear that something tragic will happen....I refuse to teach my kids to be scared of going outside.

We can teach our children (and ourselves) to be cautious and aware...WithOUT instilling fear!

So...We will (as long as it remains legal) to Trick-or-treat.  We will continue to LIVE.

And of course...We will continue to THRIVE!

Happy Fall!

 Brooklyn as "Eeyore"

 Bailey as "The scary candy hand-er-outter"

 Rachel as a "Vampire Princess"

Watch Out Bella!

 Riker as "Ninja Warrior"

 No surprise here...Riley as "Death"

The Gang...Braden as "Cowboy Kruger"

It Starts....Physical Therapy

We went into Bailey's physical therapy appointment excited.  Hopeful even.  But as Bailey's history unrolled itself in the chart....Those good feelings quickly deflated.  

Do you know what's worse than a doctor telling you that 

"there's nothing that can be done to help your child?"

NOTHING.

Nothing is worse than hearing that.

Bailey has Neurofibromatosis.  2 inoperable brain tumors. 

A year and a half on chemo...AND Degenerative Disk Disease.

While SOME people with DDD benefit....even IMPROVE with intensive physical therapy, this is not the case for our 16 yr old daughter.  It seems Bailey has a more complicated case of DDD, than first thought....And our therapist tells us that no amount of PT will help Bailey.

But...There ARE some good things that came out of yesterdays appointment.  Bailey has a couple rotated disks, that CAN be improved with PT...And the therapist offered "as much PT as Bailey can handle" to help increase core strength-Which MAY help with the pain Bailey experiences.

So...while it sucks that nothing (right now) can be done for the DDD...We ARE hopeful for the potential answers that may come in the next few months.  We don't give up, and we continue to THRIVE.  

Even when  things don't go entirely our way.

Update on Chemotherapy

For those that have been asking....An UPDATE on Bailey:

In March 2011, we discovered Bailey had (still has) a very dangerous brain tumor.  She began receiving chemotherapy immediately after this discovery and were confident that the carbo/vincristine combo would halt this tumor's growth....Unfortunately that did not happen.

The tumor went from a regular M&M size, to a peanut M&M size.....After 3 months of treatment.

We then switched to slightly more aggressive chemo (Vinblastine) And Bailey stayed on that for the next 9 months.  We had to play with the dose a little bit, because Bailey showed signs of extreme sensitivity.  (I was told by our Neuro/Oncologist that Chemo sensitivity for kids with NF is VERY common)

This tumor has stayed relatively stable during that 9 months, only changing very slightly--

Our 52 week treatment plan was over....But we still had a brain tumor, that was very much a part of Bailey's life...and it didn't seem to be going away....So we decided to continue on with a newer chemo that Bailey would take orally on a daily basis.

March 2012 we began Everlimus (Afinitor) 5mg.

Bailey's port was surgically removed and we were excited to be a part of a select group that was taking this "new" chemotherapy, and hopeful, because its reputation had been really good in treating NF related tumors.

Our "every 3 month MRI" in May showed 'no change' in the size of this tumor.

In August this tumor took a turn.  While still measuring the "same"...the tumor has changed shape.  No one can really tell me what this means exactly...Although I was told that it either means it is getting ready to shrink, or grow.

During the time on Everlimus, Bailey's cholesterol levels have sky-rocketed.  The Drs are keeping a close eye on this, as am I- at home, with diet and exercise-

We get Bailey's blood levels checked once a month and in September the levels indicated the chemo levels were 'too high'......In October, they were 'too low'.

The Drs. decided to increase the dose from 5mg, to 7.5mg and that's when a whole new set of symptoms began.

*Mouth sores
*Leg sores
*Extreme body aches
*Exhaustion
*Mood changes
*Stomach aches

Our next MRI is in November....Those results will determine what we do next.

We live our lives 'in the moment'...We have no choice--

And when happiness comes---we rejoice!

When hard times hit-as we know they will--

We look to our Father--and stay calm and still. *Kristi Hopkins

THRIVE ON!