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-

Am I Making A Difference?

It's hard to believe that 2 weeks have gone by since I was in Canada.  It was such a heartwarming experience...And I find myself longing for more.

While I was at the symposium I had this woman come up to me, shake my hand and tell me how much she liked my talk.  She pointed to her daughter - who was sitting by herself, with her baby.  "Can you go over and talk to her...?"

So I did.  I sat with her.  Told her that her baby was beautiful...That NF wasn't the end of the world...That her baby is looking to HER ..And that to HIM...She was his hero!  

I tried.

But....I don't think any of my words helped.  

To HER....This was the end of the world.  To HER, her baby was 'sick'.  To HER, it was all her fault.

I felt bad for her....Mostly because I know exactly how she feels.

I hate NF with so much passion, that sometimes, I just want to throw my computer against the wall, and give up on all this THRIVING crap.

But...

Then I see my kids.  I see them looking at me.  To MY kids...I am their hero.  The one they look to - and learn from.  I see MY attitude reflecting in them.  And THRIVING has become the most important part in how we cope with this diagnosis.

My words may not have impacted this young woman....But....Maybe they did.  All I can do, is set an example....Share my story and live my life.

And on those days where I get so frustrated that I want to give up.....I DON'T.

THRIVE ON.

Thriving With (or Without) Resentment

Today....I woke up with every intention of it being a GOOD day! I have the day off from work....I was going to go to Crossfit....Clean my house (Christmas Break has left my house in a state of craziness)....Bake Riker's Birthday cake....AND, catch up on my blog....

BUT....I woke up sick. I logged into my email and the first thing I see, is a comment on one of my posts, from none other than ANONYMOUS. It's been a LONG time, since 'anonymous' has left any comments for me....Here's what they had to say today. "The fact that you can willingly and knowingly pass your disease down to six children is sickening. You are the true definition of Selfish."
 
Thank you very much ANONYMOUS, for again waking me up out of my writers block. The first word that came to my mind after reading this comment was resentment. It's a very powerful word...And it got me thinking.

Do I resent my mother for choosing to have me...?
Do MY children resent me?

When I was about 8 years old...I began having these headaches. I was so scared that they were like my brothers headaches. THOSE headaches brought my brother to the hospital. THOSE headaches caused my mom and dad to fight. THOSE headaches were caused by something I couldn't possibly understand being that young.

So, I kept quiet about them. I was lucky. Most of my NF symptoms were not noticeable. OK...So, maybe "Lucky" isn't the right word to use...Because my symptoms WERE noticeable. To those actually trained to see them, that is. I grew up, believing that I didn't have NF. My parents, even doctors telling me that my older brother was the only one in our family who DID have it.

I witnessed the guilt - it filled my mother when SHE realized that SHE was the one who "gave" my brother this horrific 'disease'. She couldn't cope. The complications that my brother faced, tore our family apart.

But - MY NF...Didn't exist. Even though, it did.

After being OFFICIALLY diagnosed with NF after my last baby was born - well, it was too late. That was going to be our last baby anyway, and the only thing to do was to move forward, get everyone checked out, and live on. It was out of all of this that Thrivng with Neurofibromatosis was born - because that was all I had available to me, and my family.

So - Anonymous - if you actually read my blog, you'd already know this. But hey, hide behind your keyboard and feel good about slamming me, if that's what makes you THRIVE.

As for me - IF my children end up resenting me...I will deal with that. But RIGHT NOW....We are a family that has grown together....We are happy....We are THRIVING! I should not have to defend my choices...Or make excuses for what I do. I am proud of myself. I am doing my best to raise my children to be proud of who they are and what they do. If you have a problem with THAT....Let's talk. And anonymous....Let go of some of that anger. THRIVE ON!

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! 

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.

THRIVE ON!

THRIVE ON!

I met with a good friend recently.  We talked, like we always do.  She is a very spiritual woman, who is strong in her faith...And I always go away from our meetings feeling very uplifted.  She has this way about her...That always seems to encourage me.

And...Although sometimes I don't feel like it...She tells me that I also encourage her.  It's amazing the impact that SOMETHING...or SOMEONE can make...without really intending to.

When I began this blog 7 yrs ago....It's intention was to put myself out there...Tell MY story, so that somewhere...Somebody would feel less alone.  I wanted to Inspire...Uplift...And Encourage those living with Neurofibromatosis...And help them see that a THRIVING LIFE was possible!

A few years ago, I began to end my blog posts with "THRIVE ON!".....Which has been echoed back to me several times, which really makes me feel GREAT!

So GREAT, in fact that it has been the staple of how I live my life!

I want to share with you a way that YOU TOO...can show what a THRIVING LIFE looks like!  A way to LIVE PROUD...And shout to the world that YOU ARE AN OVER-COMER!  A person who doesn't let life's obstacles hold them back!!

Cancer?  Brain Tumors?  Neurofibromatosis?  THRIVE ON means that you go beyond JUST DEALING WITH IT!  You FACE IT!  YOU EMBRACE IT!  And you THRIVE with IT!

Get your T-shirt now by clicking on the shirt of your choice....Join ME as with THRIVE THROUGH LIFE!

THRIVE ON!

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."

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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