Tuesday, December 29, 2015

Hurry Up And Slow Down!

Do you ever get so busy and so overwhelmed with what's going on in your life, that it seems no matter what you do, you will never get ahead...?

This holiday season has been like no other.  Working full-time sure has made things different around my house...And it feels like whenever I get my head JUST above the water...Something happens to make me have t tread water just a little longer.

If you have paid any attention to this Star Wars movie....You know that it has broken records.  It is now the biggest movie ever!

These last 2 wks are a blur -

It's so easy to get overwhelmed ... It's so easy to forget that we need to slow down a little.

The other day, during a CRAZY MAD rush at the theater, my boss, was frantically running around in the back stock room, trying to get things ready....She looked stressed.  She looked angry.

As I pass by her....I say, "Hi ***** How are you...?"  Bleary-eyed she looks at me... "Uhhh....."
I smiled and ask her how her Christmas was.....

She sets down the rolls of cups she had in her arms....Smiles back at me....And says...."It was wonderful...!"  She told me about the quilt she got ...And how surprised she was, that her mother remembered....

S-L-O-W  D-O-W-N!

"How do you do that Kristi?"  She asks  "How are you so easy-going?"  "How is this NOT overwhelming you....?"  (meaning the massive amounts of people the are outside the stockroom)

I just smiled and told her..."They're JUST people seeing a movie..."

I know that everyday will have its end....And I will get to go to bed....and *Hopefully* get to wake up....
Yeah sure....and then come back to the theater...where it starts ALL OVER again.....But....NOW here's the secret....

If you SLOW DOWN....Even in the CRAZY- BUSY times in your life, I have found that life isn't so bad.

Today...As you go out into the world...Take things in....Experience them.  Even the bad stuff, can be turned into something GOOD

I barely remember the 2 years of driving back and forth to the hospital for my daughters chemotherapy...What I DO remember...is our quiet "dates" of milk shakes after we were done.  The meaningful conversations of what she wanted to be when she grew up.

Life is stressful....It's overwhelming...And Sometimes even painful ...But slowing down brings everything into perspective.

Slow Down.  Be present. Make a conscience effort to see the good things in life....And you will find yourself more easily able to:


Wednesday, December 23, 2015

The Force Awakens

This week, Star Wars opened...It has been something that has been talked about since I was hired at AMC Theatres 10 months ago.
Wednesday night from Midnight til Thursday 8am...I was working the 'marathon'...Where our theater played ALL of the Star Wars movies...
Every hour, the lines for this movie get moved...Every 2 hrs, a new set of lines filter into the theater. It's madness at its best. And WORST.
This year, I have seen it all. Guns, fist fights, disrespectful guests....I've been threatened and spit on. I've watched police arrest guests, and after being told to 'F-off' by a guest who then promised to meet me at my car after my shift, I've been escorted by our own security team back to my vehicle at closing.
 What makes people feel so entitled about seeing a movie that they can treat others so poorly? What else is going on in their lives that makes me their target of choice?
Where you have great masses of people, you also have great MESSES of people. It's like trying to clean during a tornado...
Humans are truly disgusting...And I am now not surprised with the amount of nastiness I walk into when I am helping to clean a theater. I've cleaned up poop, puke, pee...And other bodily fluids that will not be mentioned....

And all of this leaves me to wonder WHY I keep going back there....
Back to Star Wars...Seriously...WOW. It's the BIGGEST MOVIE OPENING OF ALL TIME and It has been nonstop since Wednesday night....Literally thousands of people flow through our building everyday – It's crazy...and....It's fascinating - I get the opportunity to witness true nerdiness with all of the costumes and props. It's pretty awesome.
The other night I saw a tiny 3 yr old dressed up as Chewbacca and a middle aged woman wearing a Princess Leia inspired gold bikini. Light Sabers, Storm Trooper outfits...And Guests talking to me in Yoda....I feel pretty lucky to be a part of this. In particular - one aspect stands out to me. Years ago, Star Wars nerds were just that - nerds. Outcasts. Now it's cool to be a nerd - and I see it at the theatre every month, whether it's super-heroes, raptors, or Jedi's roaming the halls. The more the world is exposed to what's different, the more accepting it becomes. 

What if they became more exposed to Neurofibromatosis? Perhaps a force for good would awaken among the world as we allow it to awaken within ourselves.

Thrive on! 

Monday, December 14, 2015

Connecting NF Style

You know how when you are driving around....And you spot someone on the road driving the same kind of car you are in...?  You take that extra time to check the other car out....Maybe even smile and wave to driver...Like you know...you have some sort of connection with them....Even though you are complete strangers.  :)

Well...This kid started working at the theater I work at, and I did that..."Hey, something about him is familiar..."  I just started noticing that he and I had something in common.

It's weird.  When you meet a total stranger, who has the same condition as you.  It's a crazy feeling that is hard to explain.  It's like you are friends, before you even speak.

This kid, is 18 years old....Has Scoliosis (an obvious curvature), slightly bigger head, deep set eyes...And cafe au laits spots on his arms....Which were what prompted a conversation about Neurofibromatosis.

I feel sad for this boy...He tells me that he has no one to talk to about what he is going through.  He is the only one in his family who has NF....And his parents are in denial and refuse to take him to the doctor.

We were on break together...And he had his head on the table.  I asked him if he was okay, and he tells me that he gets really bad headaches.

"Is this normal...?" he asks.

My motherly instincts kick in and I slide my chair over to him.  I told him about my headaches...and that he needs to communicate to his parents about this.

He has never had an MRI....And he asks me what they are like....And we spend the rest of our break talking about tumors and headaches.

Part of me whats to hunt down his parents, and shake them...and MAKE them care!  I understand being scared and not wanting to deal with this.  I get the thought of wanting to shove this in the corner and and ignore it.

That's what my parents did.

I get the fear and guilt.  But fear and guilt do NOTHING but make things worse.  Especially when you are using them as excuses.

The other day this boy and I are passing each other at the time clock...He told me that he told his mom that he met a lady at work who also has NF....He went on to say that him and his mom are going to the doctor next week to talk about his headaches.

I was so happy!

He said THANK YOU to me......"For what...?" I asked.

He said...."For talking about NF and not being afraid....For helping me not be afraid...And maybe...for helping my mom not be afraid...."

This folks, is what it's all about--


Monday, November 30, 2015

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.

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:

Friday, November 6, 2015

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

Wednesday, October 28, 2015

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!!

Thursday, October 22, 2015


I feel it in my gut.  The nerves.  The excitement.  The adrenaline!

This weekend, I have the privilege of flying to Pennsylvania to speak to a crowd of several hundred, to help raise awareness for Neurofibromatosis.

A wonderful organization called The Giorgio Foundation has invited me to talk about how Neurofibromatosis has impacted my life.

I am honored and so excited!

You know that feeling you get, when you know you are doing EXACTLY what God put you on Earth to do....?  That's feeling I have!!

I will take video and post it here when I return....

Wednesday, September 30, 2015

Excuses. Excuses.

I am full of excuses.  This morning, my husband came upstairs after I had dropped the kids off at school, excited about challenging me to a workout based on the cross-fit workout he'd already done at 6 a.m.

But....."I JUST worked out YESTERDAY..."

And....."I have to go to the store....."

And...."I have to put together my moms Birthday gift..."




I'm tired.  I really am.

I have tried to start a blog post for 2 weeks...And I just couldn't come up with anything 'good'....So, I thought I'd just write about what I am REALLY struggling with.

My mind is constantly racing.  Thinking about the zillions things going on.  Most of which I can do nothing about.

Then I have my job.  Where life literally is put on pause.

The movie theater.  I love it and hate it.  When I am working 7/8 ish hours a day--the outside world doesn't really exist.  It's THERE waiting for me....But it's like I get sucked into an alternate reality.  A reality filled with lazy kids who haven't learned how to work yet, over-spenders, complainers....

Do you ever pay attention to how much YOU complain?   How many negative comments do YOU make in a day?  Seriously....You should keep track.  

My own list is a long one, so I am NOT throwing stones here.

So, when I step out of the theater...BACK into reality....It's like I get SLAMMED -- HEAD-ON with ALL-THOSE-THINGS-THAT-WERE-WAITING-FOR-ME!

No break.  No time to shift.  No time to breathe.

Brain tumors....Back pain...Headaches----The worry about what the next MRI is going to tell us about Rachel. or Bailey. or Braden. or even ME.

Chores...Dinner...Laundry...The ENDLESS cleaning....and even though I have six kids all perfectly capable of pitching in, they can't do it the way I would do it, so even if I was a good delegator, which I'm not, I'd still want to do it all myself.
Wondering, despite my husband's assurances that all will be fine (and it always is) when the 'JUST-SQUEAKING-BY' lifestyle will change.

There are some days.....I fell like I can juggle everything, perfectly.  All the balls are in the air, almost floating on their own. Days...when I believe, that everything is going to be okay.

Then, there are those days, when I wonder how I am going to make it through.  

I am human.  There are days I shake my fist at God. I hear he's OK with that. I cry -- overcome with guilt...wondering in a fit of despair why I 'DID THIS TO MY KIDS'. I trip over the hurdles of life, just like everyone else does. I forget how good life is.

But....THRIVING allows for weakness, for struggle, for anger. As my husband tells me Muhammed Ali would say 'it's not how many times you fall down, it's how many times you get up' - or something like that.  I get back up.  Staying "down" isn't an option - for me, for my kids. Because life IS good, when I focus on the good in the life. The hugs from my kids. Their drawings. Watching my son play basketball. Taking advantage of working at the theatre, even, and taking the family to a movie, or sitting down with them to watch Once Upon a Time or Master Chef.  

I SMILE AT THE COMPLAINERS...Set an example for the lazy kid workers....And as for the over-spenders...? Well...that's THEIR problem, not mine.

Life isn't always perfect. Well, it's never perfect. But I can always THRIVE - whether I'm Thriving in weakness or strength.

Thursday, September 24, 2015

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!

Tuesday, September 1, 2015

September Update!

I hate when it goes this long between blog posts.  But, a friend once said to me...That she knows I am doing well, when weeks go by between my writings.

It's not that I have nothing to write about...Because believe me, I do. I just have always had a difficult time processing stuff...Then...managing my time to get it out there.

The Summer is over - and we are now in full-swing with school!  It's an exciting and frustrating time for everyone.  And we are figuring things out as we go....and adjusting schedules and getting in those very important IEP meetings...

I wish I had someone - who knew all the ins and outs of these meetings.  I know what my kids NEED...But asking for it, and getting it implemented in their plan is difficult.

Braden is a Senior.  How did THAT happen?!  He is a very sweet boy...Who still needs quite a bit of support.  People ask me all the time - "Is he going to college...?  What will his plans be...?"  The simple answer is that we need to keep Braden active in ways that most "normal" families wouldn't understand.
I would love to tell people that - "YES!"  "We are packing up the car and driving him to his dorm and he's going to major in electronics..."
But OUR reality is just trying to maintain stability.  Health-wise and financially.

As long as Braden is happy....And his tumors are stable...I would call THAT a successful life! :) 

Riley.  Errr Rylieegh :)  She just started HIGH SCHOOL!!  As a family, we made the decision to pull her from the Charter School she had been going to for the last 2 yrs...Sometimes, the fit, WE, as parents think, is best for our kids...Ends up NOT being right for them....And this was the case with Ry.  She seems happy, and is adjusting well to life as a Freshman!

I'm not sure what happened.  I blinked...And this girl grew up. :)  7th grade.  JUNIOR HIGH!  She is having a difficult time adjusting to the hustle and bustle of changing classes and accessing her locker...And the classes are overwhelming her...So we are planning a meeting with her learning group to adjust things for her.

Medically- Rachel has been having an increased amount of headaches...Which led us to get an MRI (the last one was 2 yrs ago)  And the findings were hard to swallow.  
Compared to the last MRI...She has 3 new "masses" or lesions.  They are small...but significant enough to pay attention to.

In October...Rachel will have another MRI...And we will compare, and take action if that's what doctors suggest.  Letting things go is so hard.  I was so frustrated when the drs told us to wait and see what the next scan shows...I'm a fixer....and when I can't fix....I get CRAZY (just ask Rich)  

Riker is so full of life.  He started 5th grade and is already showing off his "smarts".  He loves his teacher and has made some new friends.  He says the best part of school is that he gets to learn a bunch of cool things!

After an entire Summer of MineCraft playing...I am happy to see him focusing on other things!

Brookie was really nervous about starting 3rd grade...But after meeting her teacher and seeing a few old friends...Things are going great!  I love seeing Brooklyn grow and learn....She soaks everything up like a sponge...And has the sweetest soul ever.

She says that she loves ART the best...And wants to become an Art teacher and teach at JA...So we are definitely supporting this idea by providing Brooklyn with endless art supplies!

***Life just continues to ZIP by.  The Summer was fun...And filled with camp, video games, sleeping til noon and LOTS of fabulous memories.  Sometimes I get sad, seeing how fast my kids are growing up...But...then I see how happy they are and the sadness turns to pride :)


Monday, July 27, 2015

Human Connection

We ALL desire that human connection.  The feeling when you connect with someone who TRULY gets it.  It's a rare thing in the world of Neurofibromatosis.  And I have yet to meet someone - that sticks around long enough to even begin to relate to what it's really like having NF.

My husband is great.  He loves me unconditionally and tries really hard to get it....But honestly, he never will.  Just like, I will never truly understand what it's like for HIM, being an amputee, after a lifetime of surgeries.

We're ALL different.  We all have our struggles.

I had this friend a while back.  She had NF....And we connected on a level that I had never connected with anyone before.  It was weird, and cool all at the same time.  She got me, I got her and it was, I THOUGHT...A friendship meant to last forever.

I guess I didn't 'get her' enough...And she decided to end the friendship....with no REAL explanation other than that I was too involved in NF and advocating for my kids....And I guess SHE, well....I guess she just wanted to run and hide from it.

(If this isn't true...I know she has full access to my blog and she can correct me, if I am wrong...In fact - I welcome a response)  :)

Anyway...back to what this blog post was meant to be....That human connection.

When I see someone who has NF walking around -- My first instinct is to run up to them, and hug them, as if they are some long lost relative of mine.

I have never actually done that.

Instead, I watch them, like a hungry cat on the prowl.  Stalking his mouse prey.

Sometimes - I say something...Most times I do not.

It's an awkward dance I play in my head.  "Should I....Shouldn't I...."  "What if I offend them?"  "How would I FEEL...If someone with NF came up to me...?" <I'd be HAPPY btw and want to take them to lunch>

Other than CTF walks and other events...I don't meet IN PERSON many folks with NF....So it's really hard, when I do meet them, to know what to do.

So...I challenge MYSELF and YOU...To step out of your comfort zone a little.

Here is a little advice on how to make it a little easier.

1.   Start with a friendly HELLO.  The few times I have encountered folks with NF...I try to break the ice by saying...."I was wondering....I have NF, is that what you have as well?"
(I say NF....so I don't overwhelm them, with some LONG name...and if THEY DO have it....They will know what I am saying....if they DON'T have it....then chances are it won't be a big deal...and we can part ways...LOL)

2.  Once step ONE is over....You can take it from there.  Usually when I ask the question....the answer is YES....And I can tell them how nice it is to meet someone else LIKE ME....
Sometimes this part is awkward too because people with NF don't want to be recognized as having NF...So turning the conversation to other things is a good idea...
"Do you live around here?"   "Are u married?"  "Have kids?"  You know, small talk

3.  Finding a common interest is hard when you just meet someone...But sometimes, it happens!  Don't put too much pressure on finding a best friend....LOL  That could come off as creepy.  But put yourself out there, and be awesome.  Be friendly....And you never know what could happen...

You could be making that persons day....!

If you have a good story about meeting someone -- that put you WAY out of your comfort zone, please reply and tell me about it!!


Sunday, July 19, 2015

You DO Matter!

"I know you!"

This voice, and these words caught me off guard. I was at work, behind the register, expecting to ring up yet another large drink, ginormous popcorn, and package of Junior Mints.

"I've read your book." I looked up. "We're friends on facebook. You've been such an encouragement to me. You are so beautiful - you remind me of my mom."

I blushed, and kind of looked around, a bit embarrassed, but also thrilled to meet someone else in our wide world of NF. She said she wanted a hug, but she was late to her movie, and quickly flashed a selfie pic with me. She headed off, and my fellow cashiers just gave me a strange look and went about their business.

After all. I'm just a nobody. At least that's how I feel most of the time, and, to a point, how I prefer things to be.

It's easy to slip by- go unnoticed and stay isolated in my own little world...I'm not a lime-light sucker....And do not THRIVE at being the center of attention.

'A Quiet Encourager', was how one woman described me, when I was a guest speaker for an NF group in Canada.

It's amazing to me, the impact just ONE person an have on another.  Good or Bad.

When this blog started 7 years ago...It began, simply, as a way for me to journal our way through a very frustrating situation.  The only intention, was for me to find a way to get through the complications with a positive attitude....If someone read a post, then great....If not, no biggie.

Blogging gave me time to sort my thoughts....Giving me an opportunity to process them....Then allowing me to put those thoughts and feelings into action.

What good would this blog be....If I wasn't living what I was writing here?

For a while, I felt as if these words...would go out into cyber space and disappear.  No one commenting on my posts...Meant, no one was reading.

I got trapped in a mindset that I didn't matter.

I was still THRIVING.  But...Well you know.

Then something would happen that would totally knock me off my guard.

A note on my windshield from a mother dealing with a new NF diagnosis, who noticed the "THRIVING WITH NEUROFIBROMATOSIS" bumper sticker....

A warm, friendly hug with parents at the Children's Hospital, who just had their child diagnosed with NF...

An e-mail from a stranger...who google's 'Neurofibromatosis' and comes across MY site, and feels encouraged...

Or...Like the other night....

Just as she was telling ME how I encouraged HER....She was totally doing the same for me.
At THAT moment....JUST when I was feeling like I didn't matter.

It's so easy to think and believe that we don't matter.  To go through life and just exist.  But ...who wants to JUST EXIST?

YOU DO MATTER.  What you say.  HOW you say it.  How you act.  It ALL matters!  And you never know who YOU can encourage....It could come from just being a nice person!

It doesn't mean you have to go write a book, or start a blog....But it does start with believing in yourself.  Believing that you are worthy and good enough...And then, spreading that around, so that everyone around you believes it too.


Wednesday, July 8, 2015

I am a Work in Progress

After Rachel was taken off disability, I sorta panicked.  This meant no health insurance...And I was left scrambling...Trying to figure out what to do.

She needed an MRI...She has been complaining of headaches and dizziness for a while...And a tiny part of me was feeling that I was glad she didn't have insurance...Because I was dreading discovering that her little 'something'...could be a BIG something.

After all, Bailey was this age, when things were discovered with her.  I was scared.  I am scared.

But...Part of THRIVING is facing the fear that come along.

Neurofibromatosis is scary.  There are unknowns all the time.  The somethings could be something...or nothing....And my job is to face it, no matter what...So I can lead my children to do the same.

We were finally able to figure out the health insurance and I made the call...Scheduled Rachel's MRI...and we will deal with whatever comes along...WHEN/IF it comes along.

Borrowing worry needs to stop.


Wednesday, June 24, 2015

Hiding with Neurofibromatosis

So, I've been working at the movie theater for 3 months now.  I've made my presence known as someone who is hardworking and reliable.  My favorite job there, is working in the cafe' as a barista...I get to make cool drinks and desserts...And I take a lot of pride in the products I send out to people.

I've become known as the best barista at the theater...And even have guests order something, just because...I AM the one working.  Even having one guest tell me that his Iced Coffee with Caramel...was like having an "orgasm in his mouth"...

-Jaw Dropped-

I am having a lot of fun, but I still struggle with being 'out there' - in front of people.

It's a constant struggle.

Sometimes I feel like a hypocrite - Claiming to THRIVE with NF...While inside, I am still trying to figure out how to deal with the constant battles I have in regards to WHAT I THINK is happening when someone sees me.

I'm under these bright lights, so I know that I can't hide my bumps.  I KNOW they can be seen...So, then I have to find ways to make up, for how I come across.

Being EXTRA nice....Helps.  The fast-paced flow of people makes it so people don't really have much time to stare and ask questions...I literally can help 400-600 people a night...

But I am realizing that I am one VERY insecure person.

It doesn't matter to me when someone says "who cares what people think."

I always have cared.  And I always will.  And I guess what REALLY matters, when it comes down to it...Is if I CHOOSE to allow what people THINK of me, affect how I feel/think of myself....And if I let those people stop me from going out into the world and THRIVING.

I know that even 'perfect' people deal with how they feel about themselves...Look at all the people who get cosmetic surgery...Even tho, they REALLY don't need it...

Losing 120 pounds has surprisingly done little to help me feel better - emotionally.  I thought I would be magically transformed...Shedding the old me...But that's not what has happened.

My bumps are here.  I am who I am.  I have to learn how to embrace this....Even when it seems impossible.

I am always working on myself.  Always STRIVING to THRIVE!


Monday, June 1, 2015

Off to Camp!

The kids have been gone for over 24 hours now...The house is empty....And I am feeling like I want to accomplish ALL these things....But...I am having a rough time getting my mind (and I guess my body) motivated.

All I want to do is - NOTHING.  I want to soak up the quietness and rest.

Our home has never once been this quiet, so taking advantage of this time is important...So- why can't I push through and actually GET SOMETHING DONE?

Like my books....?

Summer will be in full swing, when the kids come back from camp...And in a little less than 2 wks ....I fly off to Utah, to see my dad.

It's always hurry hurry in the Hopkins house...So maybe there is nothing wrong with me taking this time to unwind and chill.

I still want to write my books...and I still need to re-write my keynote speech for my speaking gig in Canada....

Can someone just freeze time...?

Thursday, May 28, 2015


I don't even know what to think....Or how to process this.  So I am going to try and write this out.  Maybe ...JUST MAYBE it will help sort out how I am feeling.  Probably not tho. Sometimes...REALLY CRAPPY things happen....And there is no way to make sense out of them.

The picture above is of a house.  A house that belonged to a very good friend of ours.  A home that this friend opened up to my family....When my family had no where else to go.

Terry Canfield was Rich's friend -- I think they met through Toastmasters.

In 2008....Terry invited our ENTIRE family to come stay with him.  In HIS house....While he moved into his trailer.  No strings.   

Just a selfless act, to help us get back onto out feet.

We lived with Terry for about 20 months...And during that time got to know just how genuine our friendship was.

Terry never once asked for anything in return.

Yesterday morning, Rich called me downstairs to tell me that the house we lived in was destroyed by fire...And that it was very likely that Terry, his wife and her son, all died.

Just like that.

I never experienced tragedy like this...So all of these feelings I am feeling are new. I can't begin to express the emotions that are racing through me.

Terry was a firefighter....HOW COULD THIS HAPPEN?

An investigation is ongoing....And this case has turned into a homicide....Which just makes all of these feelings even more confusing!


I have asked God this question more times than I care to admit.  But honestly....WHY?

The lives we touch while we are alive -- You truly never know the impact....Sometimes, until after death....

Terry....I wish I could have shown you more appreciation, for the sacrifice you made for our family. You were a true friend.  And I will miss you.

Pay attention to how you live your life.  Take it slow.  Soak it all up.  Cherish your loved ones.  Pay it forward.  LOVE Deeply.  Give generously.


RIP Terry, Lisa and John

Wednesday, May 20, 2015

Neurofibromatosis Clinic

These yearly appointments always overwhelm me.  They make for a long day...And the information we get is quick and concentrated.

Here is some advise on how to make the most of your NF Clinic Appointment.  I hope it helps!

  • Plan for a LONG appointment! These appointments can take a while....Mostly because you are seen by a number of different doctors.  This is GREAT...But can also make for a lot of waiting around.  Bring a book and activities for your child.  (and Food.  Bring Food!)
  • BE ON TIME!  Typically WE schedule our NF appointment a YEAR in advance....So be respectful - and know that there are other families that will be affected if you are late.
  • Write your questions down (and remember to bring them with you. *lol*)  Note ANY concerns that you may have...NO-MATTER-HOW-SMALL-THEY-ARE!  
    -You will see many doctors during this visit...So make sure you are covering any issues you would like to discuss.
    Take the time to write the answers you get down....I know for me...I am great at asking the questions....But LOUSY at remembering what the doctor actually said to me.

  • GET REFERRALS!  This is a GREAT time to let-it-all-out and get answers and referrals for your child!  At our appointment...We got referrals for: MRI, Sleep study, Medication changes, dietitian, pain management clinic, behavior clinic and psychiatry appnt....Don't be afraid to ask....and be open to suggestions!

    Our appointment was a little different than yours will be....After all, I had THREE kids being seen...But the general idea, is to be ready....And try not to get overwhelmed.  These appointments are to HELP guide you through this diagnosis.

    If you have any specific questions about your NF appointment...Please comment below and I will respond.

Wednesday, May 13, 2015

It's A Small World

I know that I have been MIA lately.  I'm sorry for that.  It's amazing how fast life can sweep by.  The "business" and distractions have left me feeling very run down....And when it comes time to thinking about what I could do for NF Awareness month...I just feel like....I have nothing left to give.

But - I know this isn't true.

I spread NF Awareness EVERYDAY!

There are times where I am shouting from the mountaintops....And other times, where my awareness is simply connecting with a quiet smile.

Last week, a man came to the theater where I work...Who was affected by NF in a more severe way than me....He was wearing a hoodie and didn't make eye contact with me.  But when I gave him his change...My hands touched his hands, that were covered in tumors.  

I felt him recoil.  I told him that I had some of the same tumors that he had...And at that moment....everything slowed down.  He asked if I had NF....And I told him Yes.  He smiled ....I smiled.

He said he had never met ANYONE with NF before.

That felt good.  

He went on his way....Off to watch the Avengers....Now knowing that HIS world became a little bit smaller.  He wasn't alone anymore.

I like MAY.  A special month to do everything we can to spread awareness.

BUT...Awareness happens everyday for those living with this disorder.  It happens on-the-spot and out-of-the-blue.  It happens when people stare too long at you...wondering - what's wrong with her? 

Teaching and talking about NF happens on days where you just want to be left alone....

And in reality....The awareness that happens on ALL THOSE OTHER MONTHS...Is what REALLY matters. 


Wednesday, April 1, 2015

Been MIA....But I Have a Good Excuse

The last 2 weeks have been incredibly busy.  Lots of good things have happened, and I am trying to find my groove and feeling a huge range of emotions, as I am learning to let go of some of the control and find new ways to trust the situation we are in.

After a 7 year "break" from working outside of the home....Our family has been faced with a pretty stressful predicament - 

Our rent went UP...AGAIN....And we also got news that the State of Colorado feels that one of our kids who receives disability for the complications of having Neurofibromatosis....Suddenly is "all better" and no longer considered eligible.

For those living with a Progressive.....Aggressive genetic disorder...That can turn deadly without warning....Being told you are "all better"doesn't fly.

My husband met with someone hired by Social Security....Who CLEARLY had NO IDEA what Neurofibromatosis is....Who just asked a few questions and jotted down some notes about how SHE FELT Rachel is doing....A WHAM BAM- THANK YOU Ma'am interview, that clearly had an affect on the decision....And was based on no real information....

So....Basically, we could have appealed the decision, but instead ...We chose to let it be.

Which meant, we now had to figure out how to make up that income, and be sure to have enough money to also cover the jump in our rent.


So....I dusted off the ol' resume....added a few things that would be sure to grab some attention.....And applied for a few jobs.  

5-6 Applications later.....I started to get some phone calls asking for interviews.

This is when my emotions began their roller coaster ride.

I was HAPPY that I was still a desirable potential employee.  

I was SAD that IF I was hired, I would miss out - at what was going on at home.

I was ANGRY that it was ME going to work.

I was EXCITED about 'getting back out there'.

I was PROUD to be ABLE to work and help out the family.

Then...I was actually hired.

I started working at the movie theater....The BEST choice of the 5-6 jobs I applied for, with the BEST "perks"....(Free UNLIMITED movies for ME and the ENTIRE family!)

---Then Mikey (my brother) came out for a visit...Just as I was beginning my training at AMC.  Bad timing....but it ended up working out okay.

So aside from having to clean up VOMIT....URINE and other interesting things at the movie theater....The job is pretty cool....I am now working as a 'Barista' -- making cool coffees and ice cream stuff.....
I was also 'Awarded' a cool gift certificate for having a customer tell a manager that I was super nice and provided the FIRST smile he had seen all day....

I am learning to let go -- And trust my family 

And allowing Rich to take over.

As we head into April....May....It is also time for our yearly check in with the NF clinic.  This means MRI's --  Eye checks -- and a bunch of other NF-y type stuff.

Both Rachel and Bailey have MRI's coming up...and I won't be able to be there.  This brings ALL of those emotions up and stirs them around, and makes me feel rather crummy....

But I know that ALL of this....Is just part of working together as a family....And I have to trust that everything will be okay.

My 'THRIVING' is being tested...And it's NOW, that I need to prove that it is possible!

I hope to get more video blogs up and going...But for now I am just happy to have the time to write :)


Wednesday, March 11, 2015

Yay...Finally another VIDEO!


I did get hired, basically on-the-spot at the movie theater. :)

My kids burst in cheers when they heard.

My husband is quite excited as well :)

Wednesday, March 4, 2015

I've been emailed a few times about my blog, and about the way I have chosen to look at my life withNeurofibromatosis. Most of the comments I receive are very positive and I appreciate that so much. But there are few who question my positive choice. I'm not sure if they don't believe I actually live like this, or if they have so much negativity in their own life, that they just feel the need to spread it around.

I know all about Neurofibromatosis. I know about the brain tumors, loss of vision, loss hearing, chronic pain, scoliosis, body tumors, headaches, dizziness, learning disorders.

Even with all of that....I dream. I care about all the little things in life, that make life worth living. I believe in miracles. I believe in laughing when you are sad, and crying when you are happy.

Everyone has the power of choice, so why not use it for something that will propel you forward? If your life is spent focusing on the negativity, that's exactly what your life will bring you. NF sucks, there is no doubt about it. Give the power of your mind a chance to fight this disorder. Changing your perception of something doesn't change the something, but it does change the events around the something....It can make dealing with NF a little easier--who wouldn't want that?

The challenges we face in this life, build our character. The challenges reveal our strengths....or our weaknesses. Shakespeare wrote, "There is nothing good nor bad but thinking makes it so." Changing the way you choose to focus on your challenges can make the difference in if you are Thriving...or just Surviving.

Thrive On!

Tuesday, March 3, 2015

When it Rains...It POURS!

I love my video blogs...And I thought about making THIS a video...But I don't feel like I would come across very well...And I am so completely frustrated that I think the written word would be much better for this type of post.

2015 was set up to be amazing.  Rich and I had plans.  Goals.  And we were, strike that, we ARE determined to make things happen.  Heck....we even bought a nice journal to track our unwavering progress.


Life hit.

Over and OVER and OVER!

In February, We got a notification that said "Thank you for renting with us.  We value you as tenants!  Starting April 1, 2015 your rent will be increased by $150."


$150...to MOST people, is a drop in the bucket.  No big deal. But to those who live life on a relatively fixed income, scraping by month to month...It's HUGE.

Then, another blow.
A letter from the Social Security Administration stating Rachel no longer "qualifies" for disability.  That her status has "improved".  This not only threw me into a panic....It kinda ticked me off!

Neurofibromatosis does NOT IMPROVE.  Rachel HAS remained stable...As far as brain tumors and vision are concerned...But she is far from "no longer disabled".

Our situation as a family has been "stuck".  On the system and (sadly) relying on it to help us with a place to live and put food in our mouths...And now suddenly...The "system" decides that things are better...When they really aren't.

I was conflicted...embarrassed. At the same time, I'm feeling like maybe this is our chance to get OFF the system, and really push our lives out of the tangled - complicated web of medical - financial - craziness and finally stand up on our own two feet.

My mind going crazy with thoughts...The forces of nature playing a cruel joke on us.  Fate...not wanting us to succeed, or maybe INSISTING that we succeed. I'm speaking in Vancouver in October, But I should be speaking throughout the year. My next book will be out by end of Spring. Our future, while it feels like we're getting constantly punched in the face, is still under our control.

We just need to keep moving our feet. Fight back.  THRIVE.  We put our words to ACTION.  We don't give up.  We see the bigger picture....and hand our stress and our fears a KNOCKOUT blow!


Monday, February 23, 2015

Bailey's Service Dog

Two years ago, Bailey applied for a service dog.  Fergus has been such a big part in Bailey feeling better.  Not only does Fergus detect seizures -  He helps Bailey cope with the emotional side of dealing with a progressive - and complicated disorder. 

For more information about where Fergus came from, please go to www.freedomservicedogs.org

Do you qualify for a Service Dog?  Google 'Service Dogs' and search your city for organizations that can help you apply!

To Qualify:

  • Be at least 12 years of age unless service dog is needed for a child with autism (see below)
  • Have a diagnosed physical disability, anxiety disorder such as PTSD, debilitating chronic illness, or neurological disorder affecting at least one limb
  • Reside in a stable home environment
  • Be physically and cognitively capable of participating in the process of training, up to one hour per day
  • Be able to independently command and handle a service dog
  • Be able to meet the physical, emotional, and financial needs of a service dog
  • Have no other dog in the home (other animals as pets are permitted)
  • Monday, February 9, 2015

    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 --

    Monday, February 2, 2015

    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 :)

    Friday, January 30, 2015

    How Do You Manage?

    I was asked by a mother, who is dealing with a new diagnosis of NF for her young son, what a life with NF looks like...And how we manage the everyday symptoms.

    This answer is different for every one and there is no simple answer.  I wish there was a handbook...Or set of rules to follow....Heck, I wish that there was AT LEAST an affective treatment.

    While Neurofibromatosis itself is not fatal; the symptoms definitely cause life to have to adjust to be able to manage and cope.

    With the wide range of complications and variety of ways NF manifests, its hard to predict - or even give advice to families dealing with NF.  All we can really do, is rally around each other.

    I know in my own family, with four of us dealing with NF...I can see how wide spread the symptoms are.  For me, I went 33 yrs before being diagnosed, even though, my symptoms were "obvious".  For my children, vision problems. learning disabilities, and dizziness were widespread...And detected early.  Even saying that...The 3 who have NF, are so different, and I have to pay close attention to make sure we aren't missing something.

    Here are some ways our family manages

    *Take each day as it comes.  This is so much easier said than done, I know.  But seriously, this applies to ANYONE.  No one can control what tomorrow holds...So trying to control it is wasted effort.
    It is scary to be diagnosed with NF.  The what-ifs can easily consume even the bravest of hearts....I know that I have spent a lot of time feeling angry and guilty about how having this disorder is unfair...And it IS UNFAIR!
    But spending time obsessing over something I cannot control - is something I had to let go of.  And once I let go - It was a life-changing experience, where I learned how to accept what is, and figure out ways to make the bet of it.

    *Once the diagnosis is confirmed....It doesn't mean that all your research about what NF holds is true for you.  I have met thousands of people with NF...Not ONE of them is the same.  I don't care how many degrees a doctor has on their wall...There is no way they can predict the future.

    According to doctors, my brother, who has NF1 and is 44 years old, should be dead.  So never hold the STATISTICS of whatever it is you are dealing with very high.

    I have learned to not take the doctors word as the final word.  They are human, just like me...

    *We hold up HIGH our strengths!  Everyone has something they are good at...In our family, we try to make THOSE things our focus.

    *Understand what you are dealing with...But DON'T get wrapped up in it.  We take an active part in having NF...But we don't allow it to stop us...Or keep us from doing what we enjoy.

    Go through the coping process
    *Anger (it's ok to feel this....Just don't stay there)
    *Learn (understanding helps)
    *Take control (DO something! Teach someone! Inspire someone!)


    Tuesday, January 20, 2015

    The Unstable World of Stable

    I am finding that living in the world of "STABLE" is hard.  ALMOST as hard as living in the world, where we saw the doctor every week, to monitor 3 brain tumors.

    Let me explain.

    When Bailey's tumors were discovered...It sent us into another world.  A world filled with weekly doctor visits, MRI scans, blood draws, fevers, nausea....Writing about it, being 2 yrs removed from that life, is surreal.

    It's a blur...I don't remember how we managed.

    We were given so much attention...And we felt "safe".   At least I DID.  We knew that if anything were to go wrong...That our doctors were RIGHT THERE....And that they knew us.  They knew our story.

    Being "stable" scares me.  Because I know any moment, that could change.  Any moment, life can send us right back to that other world.  A world that we have become strangers to.

    At our last MRI...The news of "STABLE" sent a very uncomfortable feeling -- "See you in a year!"  I should be celebrating this news...Right?  I did celebrate...But....

    This news made me feel like these doctors have no idea how suddenly and abruptly life can change....You would think - that working with children with cancer, they would understand this!

    They sent us away...Like ending a relationship...A breaking of hearts.

    Don't they get it...?

    Stable means NOTHING to me.

    A year from now, we will be strangers to our doctors.  Our story forgotten.

    I feel like the tumors in my daughters head, are just a ticking bomb.  I mean, they came from out of no where...We were blindsided, when they showed up on the MRI ...Why wouldn't our doctors want to monitor them more closely ...?  A year is a long time.

    I keep reminding myself that STABLE is a good thing.  But we were stable before those tumors were found...Then got the wind knocked out of us.

    I can't relax.  The moment I get comfortable with STABLE....Everything changes.