Monday, December 30, 2013

I Resolute to NOT Resolute

10 Reasons I Don't Have New Year's Resolutions

  1. I am a DO-ER.  I have learned that ACTIONS speak louder than any words I could put down on paper.  Making a list of things I want means nada to me.
  2. I live my life "In the moment", so my CHANGES....happen NOW.
  3. While GOALS are great to have....Year-Long plans of actions just don't motivate me.
  4. Did you know that the Journal of Clinical Psychology says that only 8% of those who make resolutions, actually stick to them...?  I refuse to be in that 8% - 
  5. LOSING WEIGHT....Is the top resolution ever.  It has been on my list of things I wanted for over 30 years.  And...The ONLY time I have actually accomplished this goal...Was when I decided to stop making it a YEARLY resolution!
  6. The pressure of making New Year's Resolutions make me feel like crap.  Going into a New Year is awesome...and I have hopes and dreams of it being 'the best year ever'....But lists and plans, make me feel like I am setting myself up to fail- AGAIN.  I stick with daily goals.  Daily plans.  Daily Intentions.
  7. Resolutions are typically unrealistic - I am a mom to 6 kids and live in reality.  I will not make a list of unattainable expectations.  "Being a size 4 by February" or "Getting to 120 pounds".  Nonsense. 
  8. In MY past...Resolutions have been about taking away something...or doing LESS of something.  Negativity will NOT be a part of my life anymore-
  9. Instead of having a resolution to BE BETTER/DO BETTER....I celebrate that I am already there.  I celebrate the progress I have made.
  10. Loving myself just the way I am.  While having intentions on doing more things that ADD, not take away--SOLUTIONS....Not resolutions are my hopes for 2014!

Friday, December 13, 2013

Sarah Atwell


When you're different.  Really different.  Life is hard. When people see anything that isn't "normal"...They judge.  They stare.  They wonder.  And that's okay.


What happens after that curiosity is what really matters. 

I have a few blog posts here about bullying.  Heck...I even have a chapter in my book that tells my bullying story...The impact bullying has had in my personal life is immeasurable, so when I see or hear of stories of triumph...I want to scream from the rooftops!!!!

Sarah Atwell...

 Like me has Neurofibromatosis.  She has a tumor on her face that distorts her features.  She is a beautiful girl, who has endured unbelievable cruelty.

I was one of the thousands of people who view her video about how she felt about living with a disorder that you can never hide from.  I cried while I watched ...and smiled when she let her strength show through her own tears.

You are a hero!  Finding your strength and pushing back, has gone on to inspire so many people!  I am so proud of you.  Your strength and spirit inspire me!

YOU are what THRIVING is!

Starlight Christmas 2013

Starlight Children's Foundation is a non-profit global charity that partners with many different companies, to help improve the quality of life of families going through medical crisis, or facing life-long medical challenges.

Our family joined Starlight almost 3 years ago and we have been so blessed to be a part of such a wonderful organization, that truly cares and seems to understand how important it is to shake off all of the medical worries, take a night off....and just have fun!

We drove downtown to the amazing Sherman Event Center and our family was greeted by some cheery volunteers - who showed us to the party....The kids ran ahead, so excited.

Brooklyn refused to sit on Santa's lap.  She kept saying "He isn't real...He isn't real"...
She told me that Santa was like Jesus...."He lives in your heart...and makes you feel magical."

I couldn't argue with that, so we just enjoyed watching as the other kids hopped on Santa's lap.

Each of my kids got a special gift, marked with their names, which we took home to put under our tree.

The amount of love and detail put into the Starlight events truly make me feel blessed.  We are able to allow our guard to come down, and just enjoy an evening out as a family...Not worried about how much money we are spending (Starlight covers all costs), or having someone feeling left out.

Thank You Starlight, for helping to make our family feel so loved!

Tuesday, December 3, 2013

Eye Issues with Neurofibromatosis

One of the most common signs of Neurofibromatosis is Lisch Nodules.  These are harmless/benign "elevations" of the color parts of the eyes (the Iris) and a key diagnosis factor in people with NF.  Basically, we have been told that Lisch Nodules are "birthmarks", that have no affects on vision and require no treatment.

Our NF doctors are awesome, don't get me wrong...And were telling us, that it is "highly unlikely" for a child to develop Optic Nerve tumors after the age of 8....And that MRI scans would no longer be necessary...UNLESS, something showed up in the eye exams....

Braden has had yearly eye checks, even before his NF1 diagnosis in 2007.  We were doing exactly what we needed to do, and Braden, to this day, still sees 20/20.

However, during our routine - yearly eye visit 2 yrs ago, the doctor notice "inflammation" in Braden's left optic nerve....

This alerted our Neuro-Oncologist, sending Braden in for an MRI.

It had been about a year since his last MRI (which came back with results as your typical "NF Brain") Click HERE for more on "NF Brain"

I wasn't really sure what I was expecting...We were dealing with Bailey's chemo and I just assumed that the findings were going to be no-big-deal.....But, when I got a call from the doctor before we got home from our drive from the hospital...I knew SOMETHING was wrong.

"But...You told me we didn't have to worry....You told me......"

I was side-swiped

At 14 yrs old....After 2 "normal" MRI's...Braden was diagnosed with an Optic Glioma.  Treatment would depend on his visual exams....Which, thankfully continue to be normal.


It's THESE exams, that come every 3 months, that went on to diagnose a NEW problem.

After dilating....Our AWESOME doctor noticed issues with Braden's right eye.  I knew something was going on, after the doctor took an extra long time looking into Braden's eye....leaving the room, and coming back with TWO other doctors.  Specialists.


One doctor quickly rattled off some really long diagnosis, and left me sitting there.  WAIT.  WHAT?


Braden's right eye has something called a "Combined Harmatoma of the Retina and the Retinal Pigment Epithelium".....

I know right...?  What is this in ENGLISH!?

Basically a tumor that is too far back to be an optic glioma....and too small and in an area that MRI's can't pick it up...But can greatly affect vision, especially peripheral vision.

Eye issues are very common with NF...And with routine exams, most issues just have to be monitored.  The "wait and see" is just the way it goes with NF...Frustrating?  Absolutely.  But as I look into my sons eyes...I see a boy full of future...Full of Love....Full of Spirit...And full of Vision.

Thrive On!

Wednesday, November 27, 2013

Pope Francis

When I first saw this picture and read the story, I KNEW I wanted to write about it...But I really wasn't sure what I could say, that hadn't already been said...It's a beautiful and wonderful story of true compassion and unconditional love.  If you haven't read it...Click HERE

Neurofibromatosis is often a cruel disorder, and since it is also progressive, it often feels like I'm just waiting for what will happen next. When I see the photos in the article, a flood of emotions overwhelms me. Although, not to extent the man above deals with...I understand the burden.

Scrolling through the photos in the article, I see a frightening transformation, that shows just how relentless NF be... And sometimes, I find myself wanting to crawl in my dark corner of this world and just hide from it all. 

The reality is too much for me to bear.  The "what-ifs" and "could-be's"

The truth is, I hate Neurofibromatosis with such a deep seeded passion, that sometimes....This blog, and the responses I get from it, are the only thing that keeps me from completely giving up.

I'm often called "one f the lucky ones", because I don't have all the large external tumors, and ONLY have hydrocephalus, a benign brain tumor, and minor cosmetic bumps all over my body that most people, other than me, of course, don't notice. That's all I have, at least, for now. Being "one of the lucky ones", does not bring me any relief...Because I know that the way I am NOW has nothing to do with how I will look in 20 years...which very well could be like the man in the photo....

And this is where THRIVING comes in.  It's not about just coping, and managing the complications with myself and the 3 of my 6 kids who also have NF....It's about something much more....Finding my purpose. a person, am so much more than my appearance.  Anyone who knows me, knows this...And as much as I hate this disorder...It has also brought me to a place where, I know exactly what God wants from me.

I have my bad days--and REALLY bad days....I have days when I ask God "WHY?"  I am human after all.

But it's those days when I see LOVE IN ACTION.  Compassion.  Embracing something that isn't understood....And Making a difference...WOW.  This is where I find my inspiration.


Sunday, November 17, 2013

I'm No Orson Welles

After my radio interview was finished...I breathed a sigh of relief...."IT'S OVER!!" I said to myself as I walked out of the 12-story building...I felt good.  REALLY GOOD!

Radio is fun...The interview was easy...And...I met a new friend, who is oh-so-inspirational!

If you would like to hear the interview, you can click HERE

Talking about Neurofibromaosis comes easy for me....I live everyday with 'something new' popping up, and find a huge amount of joy when I can talk to somebody that has never heard of this disorder....OR....when I can help a grieving family through the process of a diagnosis.

But talking about weight....This is NEW territory for me, and I still have a hard time accepting my weight loss.

As I said in my radio interview....I have ALWAYS had to deal with my weight.  Being a "chubby baby"....."sturdy" child and just plain "fat" adult, I used my weight as just another excuse to hide behind.

I wasn't diagnosed with NF until my 30's....But, I really always knew I had it...And the weight, was just something to hide it....A way to continue to 'fly under the radar'.

After that crushing day, when NF was recognized by my OB, I had to face that diagnosis head-on.  Just like that day, when those nasty numbers popped up on the scale....Slapping me with the reality, that I was out-of-control, and in serious denial.

Almost 2 years later...I have lost 115 pounds (and still going) and have continued a THRIVING LIFE, by showing the world, that I am no longer hiding.

And while I am no Orson Welles, the whole process of being on the radio was AMAZING!

Thank you to Angie Austin, for the opportunity to share my story, my battle and my successes with your audience!

To Robbie-  I am so glad to have met you!  Congrats on your weight loss AND your book launch...I am looking forward to a long-lasting friendship!


Friday, November 8, 2013

Wham Bam!

It's early.  TOO EARLY.  I'm sitting in another waiting room, while my daughter is getting her brain and spine imaged.  I'm used to this....I'm not pacing the floor, or even in the MRI room holding Bailey's hand.  I'm just here, wondering as the CRANKING and JARRING noises fill that room and images flash on the computer, what they are going to tell us.

For the last 9 months...We have heard the word "Stable"....No word sounds better...And no word has ever brought me such relief...Will we hear this word again today?  

I AM hopeful.  I HAVE given this to God....But....

When you are a mommy, who has a child that has something wrong  with them, there is NOTHING powerful enough, to take away the pain and worry...Not even God.

Then there is Braden.  Today...He will also be scanned.  His newly diagnosed eye issues will be closely looked at and imaged with an MRI....And the tumors in his back will also be checked.

This is over 4 hours of MRI-ing

Surprisingly - I'm not a mess.

It just is-what-it-is and we will take whatever news we get from today, 
and move forward in the way we need to.

This blog post will be updated--as our day continues

1:15 PM- 4 hours in the MRI and 1 hour driving
I got the kids something to eat....
Bailey was supposed to fast for her blood draw-  We weren't told this, but should have known, since she has had to fast for every other draw.....But, she was hungry, and I just didn't think.

We are checked in and just waiting now...

Thank you for your prayers and support


Wednesday, October 30, 2013


This is my favorite time of year!  The cooler weather, the changing of the leaves, the smells....Everything about Fall makes me happy. Especially....Pumpkin Bread....which I HAVE made, but have yet to indulge in.

I remember as a little kid, how excited I would get for Halloween.  My dad would get his make-up kit out and spare no expense when he would create scary costumes for my brothers.  I was fascinated watching  as my brothers would get bloody scars or fake nails through their heads...

For ME...Halloween isn't about the devil....or Pagan....or darkness.....It's about having ONE night, to go all out -- Dress up and have FUN!  Knocking on doors, getting FREE candy and seeing my kids get soooo excited, as they dump their pillow cases of candy onto the living room floor...(So that mommy and daddy can inspect "suspicious" looking Twix bars *evil grin*

Selecting costumes at my house is a seriously crazy event, which usually starts taking place sometime in August. :)  As my kids get older....The costumes get a BIT more complicated.....

This year, I am proud to present my children:


SALLY from 'Nightmare Before Christmas'

TINKERBELL or FAIRY.....She can't decide

Yeah....This says it all 

So, I am a Christian mommy who LOVES Halloween.  In OUR family the "bad" part of Halloween doesn't even come to mind.  We are just a bunch of goofballs out knocking on doors to get candy.  THAT'S TRADITION for us....Which I sadly see slipping away.

Last year, our neighborhood looked like a ghost town.  Porch lights off, and just a handful of kiddies walking around....It made me kind of sad.  One house....dumped their entire bowl of candy in my children's bags....because WE had been the only trick-or-treaters for them -- 

I miss the 'old days'....But for as long as I can....I will have HALLOWEEN -- I will decorate and dress up and continue to be the goofy mommy who goes door-to-door with my kids


Happy Halloween!

Thrive On!

Thursday, October 17, 2013

What's Your Excuse?

Okay...I usually don't jump on the headline wagon, but this definitely got my attention.  

I read the thousands of comments, in response to her fitness ad, some calling her "selfish" and a "bully"....while others praised her. 

So, how do I feel about this and what's the point of putting this on my blog?  

Weight has always been an issue for me.  I was chubby being born, "sturdy" growing up and just plain FAT as an adult.  I hated (sometimes STILL hate) the *RAH RAH--I'm ALL POSITIVE - ALL THE TIME* stuff...And I have to admit that 2 yrs ago, I would have looked at this ad, and rolled my eyes, at yet ANOTHER health nut, rubbing it in, that I was just another lazy mom, who didn't care about her body. (I was)  My journey was too long.  I was too tired and angry at life, to feel good about ANYTHING!  And ANYONE who tried to tell me "If I can do it...You can do it" was just another thorn in my side.

I had my wake up call.  And it was a scary one...A year and a half ago, while Bailey was still going through chemotherapy, I stepped on the scale.   My "excuses" had gotten the best of me and I was shocked into reality, when those numbers showed up.  Not shocked really.  More like shamed.  I had done this to myself. And I was the only one who could do something about it.

Today, looking at this ad...Maria Kang is a champ.  A woman  who took control of an eating disorder...And worked HARD to get where she's at.  No where in her story or website did I see a "bully" or a "fat shamer"...

I see a motivator and an inspiration. ...I see a NO EXCUSES WOMAN.

My ENTIRE LIFE has been filled with excuses.  Those EXCUSES got me to almost 240 pounds and I was living a life that was depressing and shameful.  I was killing myself, right before my children's eyes...and I was setting an example that was saying it was okay to let "life's stuff", get in the way of what I wanted.

I am a mom of SIX children...All my excuses are legitimate and sound good.  I have a disorder that causes tumors and extreme pain.  I have hydrocephalus and a brain tumor...I have every reason, to just give up and let life do what its going to do to me....

I was/am dying in 10 different ways.

BUT...I have ONE THING I have control over...The ONE thing I could do something about...My Weight!

Forget genetics for a second....because - in MY opinion, that's just another excuse.  I know I will NEVER EVER look like Maria Kang....But that isn't the point.  She NEVER says, that women need to LOOK like her or BE like her to be healthy....She DOES say that YOUR LIFE is in YOUR HANDS.

My wake up call, was my second chance--

Over the last year and a half...The weight didn't magically fall off me.  I've been working really hard!  I FIND the time.  I FIND the energy.  I FIND the willpower....Even when I feel that there is nothing left to give...I dig deeper...And guess what I find?   MORE!

Finding the time to exercise with my son holding my feet..
with unfolded laundry on the couch, 'cause that's just the way life is

There are truly NO EXCUSES to find a way to get what you want.  That may sound harsh to some, but it's true.  If you want something bad enough...You have to find a way to get it.


Wednesday, October 9, 2013

How Dare You!

So, I get this "anonymous" comment -- Strange how all the negative comments come from "anonymous".

Makes ya wonder.

Anyways, the comment said "How dare you..." Blah blah blah  "show pictures of Neurofibromatosis" blah blah blah "It's shameful that you claim to THRIVE with NF, but depict NF in such a negative way..."

Some other stuff was thrown in there too....But I didn't bother reading it.

How dare I?  Really?  What?  Show the reality of a disorder that is EXTREMELY VARIABLE and so wide-spread, and someone out there would actually benefit from being educated on not just the MILD form of NF, but also the SEVERE forms that exist?

What good would I being doing ANYONE, if I just blew sunshine and roses out there to the world?  I live with NF.  I know the good, bad and the ugly of this disorder.

I WILL continue to uplift, educate and sometimes share in somebodies sorrow when it comes to Neurofibromatosis...THAT'S REALITY....THAT'S part of THRIVING with Neurofibromatosis!

(Bumps and All)

Tuesday, October 8, 2013


That's the BIG question, isn't it?  WHY?  Why Neurofibromatosis...or Cancer...or Muscular Dystrophy...or a zillion other things....

I was one of the thousands lucky enough to see the movie UNSTOPPABLE.  I've heard about it for months...I was even part of the rise against the banning of the promotion of this movie on Facebook and Twitter.

Overall....I LOVED the movie.  Kirk Cameron went against the "norm" and created a truly UNSTOPPABLE film that, I am sure will change the lives of many people who were 'on-the-fence' about their beliefs.

I've asked "WHY" many times during my life...More often since Neurofibromatosis hit our family hard with its relentless blows...There is always something  to worry about...And there have been times when I feel like MY life is just a continuous science experiment, that keeps going wrong.

But...It's my belief in Jesus that tells me...when I am feeling like that....I need to draw closer to Him.

Sometimes...This is impossible.

I'd be a liar, if I told you that every time I feel a negative thought or think I am being cursed, that all I do is pray....and that it all magically goes away....

Faith doesn't work that way.

My belief -- And what I got from the movie, is that there is a reason for everything.

People suffer.

People die.

But- Life is always going on.  Moving forward.

People also heal.

People also leave imprints of their time here, for others to see.

So -- Why do bad things happen to good people?  Well...If BAD things only happen to BAD people...there wouldn't be those awesome stories of triumph and overcoming.  Healing and Restoration.  Faith and Inspiration.

I am HERE for a reason.


Friday, October 4, 2013

Run Run Get Around...

I love Colorado.

We had our first snow fall today and we are again at the we got to enjoy the crazy drive.
I swear, I think people completely forget how to drive during storms.

Today's appointment is to check on Bailey's bi-pap.  It's one of those appointments where I just wish we could stay home and discuss stuff over the phone.

We have had appointments every single day this week....And I'm just exhausted.

Bailey got great feedback from our sleep clinic doctor...and has tolerated the bi-pap machine wonderfully.

I'm so proud of her...She has been so good about all her appointments...she doesn't complain at all.

She is the true living-breathing example of what it means to THRIVE!

Sunday, September 22, 2013

Applying for Disability with Neurofibromatosis

Written by: Ram Meyyappan
Thank you Ram for your patience - The information you have provided in this article is sure to help many people! I have applied and been approved disability for all 3 of my children who have Neurofibromatosis...However, I have been unsuccessful in getting approved for myself.
The process was exhausting...To say the least. However, I am certain that I did the right thing, in assuring health and financial security for my kids as they grow and deal with all the complications of NF.
If you have any questions, you can contact me or Ram...Or just leave a comment below.

Thanks Again Ram!

Applying for Disability Benefits with Neurofibromatosis
Neurofibromatosis is a genetic disorder that can affect both children and adults. It can be a very debilitating condition for a child and can prevent an adult from performing substantial gainful work activity. Fortunately, Social Security Disability benefits may be able to help children and adults who are suffering from this condition.
There are two Social Security Disability programs that you may qualify for. These include Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). If your child is suffering from the condition, he or she may qualify for SSI depending on your family's financial situation. If you are suffering from this condition as an adult, you may qualify for either SSDI or SSI or a combination of both depending on your work history and your household finances.
Qualifying for SSDI
In order to qualify for SSDI, you must have earned enough work credits through your past work history. As of 2013, for each $1,160 that you earn you earn one work credit. You can earn a maximum of four work credits per year. In order to qualify for SSDI, if you are 31 years of age or older, you will need to have earned a total of 20 work credits. If you are under 31 years of age, you must have worked at least half of the time you have been able to since turning age 21. For example, if you are under 24, you must have earned 6 work credits to qualify for SSDI benefits. If you are 27, you must have worked three of the past six years in order to qualify for SSDI benefits.
Qualifying for SSI Benefits
If you have not earned enough work credits to qualify for SSDI or if your child is suffering from neurofibromatosis, you may qualify for SSI benefits. SSI is a needs-based program. In order to qualify, you monthly household income cannot exceed $710 as an individual or $1,060 as a couple. Your household assets must also not exceed $2,000 as an adult or $3,000 as a couple.
Qualifying for Disability with Neurofibromatosis
In addition to meeting the above-mentioned criteria, you must also prove that they are disabled according to Social Security Administration (SSA) guidelines. Unfortunately there is no listing for neurofibromatosis in the SSA's Blue Book. However, this does not mean that you cannot qualify for benefits. It can be done if you provide enough medical documentation to prove that you are completely unable to perform any type of work activity whatsoever. This means providing treatment histories, copies of your clinical records, and lab and imaging results. For a child, it may mean providing the SSA with sufficient proof of a learning or developmental disability.
For more information on how to medically qualify with Neurofibromatosis, please visit:
Applying for Social Security Disability Benefits
You can apply for Social Security Disability benefits online ( or in person at one of the local Social Security offices. When you apply, you will be asked to complete a number of forms. Make sure you fill out these forms carefully with very detailed and specific answers to help the SSA understand how you or your child qualify for Social Security Disability benefits.
Don’t be discouraged if your application is denied. Almost 60% of initial applications are denied. There is an extensive appeals process through which you can try to obtain the benefits you need. If your claim has been denied, you should strongly consider hiring a disability attorney or advocate to help you with the appeals process.
Article by Ram Meyyappan
Social Security Disability Help

Tuesday, September 10, 2013

Another Rare Tumor?

I'm not really sure how to begin this blog post, because I am still processing our long day at the eye clinic.  Lots of long words were thrown at me, and I literally had one of the many doctors we saw write what he had told me down on a piece of paper.

What is it with doctors and their messy, short-hand scribbling?

I couldn't read the writing, so the nurse was awesome and re-wrote it--Thank Goodness!

There is an abbreviated term for what the doctors are thinking Braden is dealing with.  CHRRPE (gosh, even the abbreviation is long.)

Combined Harmatoma of the Retina and the Retinal Pigment Epithelium.  *Whew*

Basically this is a "rare" (yay for us...NOT) type of lesion or tumor of the macula. (The back part of the eye that is responsible for central vision)

We were told that Braden would need eye checks every six weeks, to monitor his vision, because once vision problems happen, it can very quickly take his vision and can very possibly turn into cancer.

It was a lot to take in...But we were thankful and comforted by these very attentive doctors...who told me, that this type of condition is often missed by general eye exams.

For Braden, he has this way of "checking-out", when things get complicated or overwhelming, which - in this case, is a blessing.  All he was worried about, was that it was 2pm, and he hadn't had lunch yet.

We stopped at McDonald's before heading home, and I let him choose ANYTHING from the menu.....A #2- "large-sized".....which he gratefully inhaled.  

Where has the time gone, where Happy Meals were all he wanted?


Monday, September 9, 2013

Thoughts From the Waiting Room

I'm here.  In a waiting room.  Again.  Braden is totally oblivious with how angry I am right now.  He is in for his first test and truly has no real clue why we are here.

I have talked to him.  I have told him that the doctors have concerns...but he has this way of "checking himself out"...when things get complicated.  A blessing in disguise.

I don't get REALLY angry very often. 

As we checked in this morning....the lady at the front desk mentioned how sorry she was for my young sons diagnoses. (First thought....Neurofibromatosis)  "What diagnosis? "  I asked.

"Cancer" she replied

"Uh....he hasn't been diagnosed with cancer! " trying so hard to not just breakdown right there.

"OH.....usually these tests mean.....I'm sorry.  I'm sorry!"

I melted. 

Braden and I walked around the corner to the next waiting legs bairly keeping my body up.

Process and breath.

Today is our appointment with The Rocky Mountain Lions Eye Institute.  I've been both dreading and looking forward to this day for over a month.  I don't know what to expect, but was told to plan for an "all day" visit with specialists who will hopefully give us some answers.

Braden had his 'every-6 month-eye check' last month and the doctor told us that "suspicious calcium and masses" were found way back in Braden's right eye.  This to go along with Braden's already diagnosed LEFT SIDE optic glioma.

But this didn't appear to be a glioma.  It's "something else" our doctor said.

After Braden left the for a bathroom break the doctor showed me images of what he found.  Technology is so cool...And I was able to see the nerves, vessels and optic nerve.  The doctor pointed to the areas of concern and told me that what we were looking at COULD BE early signs of Cancer.


I've been told many COULD BE's in my life, but THIS....I felt dizzy and sick.  I sat down on the chair next to the computer, where the images were flashing -- Braden came back into the room and sat in the exam chair.

Nothing more was said directly to us....Except for "We need to send you to a specialist."

And this is where we are...About to head out for our all day eye appointment....And I realize, just like the day Bailey was diagnosed with her brain tumors and went on chemo....That I have a choice to make.

I can CHOOSE to spend my day worried and fretting over the COULD BE....


I can CHOOSE to spend the day with my teenage son (something that rarely happens) and be happy.

I know the path I am taking today!


(An Update will be posted about the results as soon as I know them)

Tuesday, September 3, 2013

Neuropsych Evaluation

What the heck is it, and why is it needed?

A few years ago, I experienced our first Neuropsych test...And I was blown away with the information I got back.  This testing was part of what got Rachel and Braden's IEP completed with the best possible resources available....And helped ME, when I wasn't able to tell the teacher's what exactly my kids needed.

Neuropsychological testing is an evaluation of a child's mood, behavior, personality, cognitive ability and over-all IQ.  The testing takes 6-8 hours and is performed by a licensed clinical Neuropsychotherapist.  Lucky for us, our doctor also specializes in children with Neurofibromatosis.
The testing includes various aspects of attention, memory, speed of information processing, language, sensory processing, motor ability, higher-order executive functioning, and intelligence.

Anyone with a Neurological disorder, or any type of brain injury should have this kind of testing done, not only to provide vital information to care givers and teachers, but also to provide parents with an understanding about how their child learns, so that they can find proper resources, as the child grows.

By lunchtime...Bailey was DONE with all the questions.  
But she fueled up on a cheeseburger and pushed through!

Common Questions

*Why should my child have a Neuropsych test done?
An accurate, scientifically based evaluation leads to personalized and more effective treatment, rehabilitation and life adjustments.  The test provides vital information about how your child learns...This information can be passed on to educators, who then can make school, a much more positive experience.

*Does Insurance cover this type of testing?
Typically yes.  Depending on your coverage and plan.

*How do I get the results of this test?
A few days after the test is performed, you will meet with the doctor, who will go over the test.  Your child, typically does not need to attend this meeting.  Any questions you have about the test, or specific questions about your child will be answered.  Further testing, and/or treatments may be recommended. You will also receive a printed version of the test, in the mail about a week after your meeting.  Keep this in a safe place and make copies for your child's school.  You can request an IEP meeting, to go over the test with your child's teachers.

The results of this test can be quite overwhelming...So be sure to ask the doctor any questions you may have.  It may also be a good idea to prepare questions ahead of time, and bring a notebook, to write down the answers to those questions.

Based on the results of our child's testing, here are some of the questions WE had, for our doctor:

*What does the "overall IQ score" mean?
*What kind of future can we expect?
*Based on these results, what kind of job skills or training will be needed?
*How can we get the school, to help with the specific way our child learns?
*What types of rehab/therapy are available?

No matter what the results say, remember that, every single child is unique and special.  The results only define the way your child learns and how they process information. Low IQ scores, does not mean your child isn't smart...It just means your child learns, in a very specific way and the test results will help guide your child to the right kind of therapies and treatment...and is an essential part in finding ways to personalize their education.

If you have any specific questions, please feel free to contact me, or just comment below.

Monday, September 2, 2013

The Elephant Man

The very first time I looked up the word 'Neurofibromatosis' was when I was a teenager.  I was curious one day, and got my encyclopedia out.  I had this fear inside me, as I read the description.  My brother Mike and my mom definitely had this disorder...While I....Would not get diagnosed until many years later.

I remember the encyclopedia having the picture above in the description and feeling horrible for my mom and brother...Wondering if they would soon look like 'The Elephant Man'.  I slammed the book shut....Never to look up NF again...That is, until my 'official' diagnosis in 2007.

You have to understand where I was - at this point in my life.  My mother called NF "God's Curse"...and had so much anger whenever I would ask questions about it.  I already had a flawed view of what NF was...And to see what NF could be, brought me to a place where I just didn't want anything to do with it.

Recently, I got a GOOGLE alert for Neurofibromatosis, that talked about researchers AGAIN doing studies on the famous Joseph Merrick bones, that rest in a small museum in London.  My first thought, was to just let this man rest in peace!  (Read that article HERE)

But...At the same time, wouldn't it be nice to set the record straight?   I know I am not alone - when I say, I don't like it, when people connect who Joseph had and NF...especially if it is found that he did NOT have NF...But... what if studies reveal that Merrick DID have NF?  Not to stir up any anger here...But it IS possible for him to have suffered from BOTH NF and Proteus.

My thoughts doing a ping-ball dance in my head as I flash back to one of our doctors who claimed he knew "A LOT" about Neurofibromatosis....Calling it "The Elephant Man Disease"....And how I quickly corrected him, telling the know-it-all, that Joseph Merrick...Had Proteus Syndrome...Not NF.  

I talked to my husband while writing this blog post.  When he speaks to audiences about creating a 'Win Anyway' attitude, he often brings up our family and NF. He mentioned that when he brings up The Elephant Man, it's give people perspective about how variable NF can be - and that his wife and kids could walk in and nobody would have a clue they have NF - because, right now at least, it's primarily manifesting itself internally, not externally.  

I love the way he can talk about NF....And appreciate him so much for bringing people to understand it....But for some reason, "The Elephant Man" thing has always boiled up anger inside of me....WHY?? Why are people (including ME) so bothered by this?

It's because, for me anyway, it's scary.  Merrick truly suffered with his condition(s) and lived a life being stared at, mocked and tortured....Eventually dying - trying to be "normal".  He was terribly deformed and I am sure in a lot of pain.....And honestly, he is hard to look at....leaving me feeling like perhaps I can be accused of doing to HIM, what I hate people doing to ME.....I don't like this feeling.  

He was a man, above all.  His story and condition may be a hard one to understand and deal with, but his story is worth learning about.

In the long run, it really doesn't matter if Joseph suffered from NF, or Proteus, or a combination of both disorders.  What DOES matter is letting go of the Stigma -- 

I don't personally use The Elephant Man description to help people understand NF...Because it's inaccurate (until proven otherwise)  While it may help people understand the variability...It just isn't the way I do it.


Thursday, August 29, 2013

Did You Have Surgery...Or Something?

Ok....Just forewarning you that this post may be a little ranty....(everyone deserves to rant every now and then)  

So, I'm outside unloading the groceries from our van....When this woman - (A neighbor, who frequents this blog, and I'm totally putting myself out there when talking about this, but I really don't care) Stops - Waves and says "Hey"....."Wow, you've lost weight....You have surgery or something?"

"No" I smiled, "Just a lot of hard work"

"No way...Come On.  You're joking....You had to have had surgery or something....What kind of weight loss pills are you taking?"

"Nope no surgery" I said, "just changing what I eat, and exercising."

"Ooooookaaaaayyyyyy." She walked away, rolling her eyes. Clearly, she didn't believe me.

She probably hasn't seen me in six months, and I've changed a lot in that time, both in weight and shape, and in the last 18 months I'm down 112 lbs. Still can't believe it when I say it to myself. At this point, I'm working on exchanging fat for muscle--toning up.

As for this woman? She's the same gal who sells all these herbally - oily - "CURES" for this or that, and accused me of not caring enough about my daughter to purchase her over-priced....No-Proof-to-cure-ANYTHING crap.

Yes---She ACTUALLY said "You must not care enough about Bailey, to want to AT LEAST TRY this stuff."

Sure, she really doesn't understand Neurofibromatosis. (Heck, I've run into DOCTORS that don't really understand it, and actually had to convince them I HAD NF.) She doesn't understand that there is NO "cure".  No magic potions, oils or diet will ever take this disorder away from me or my family....And I am sure she just wants to help....But to accuse me of not caring enough....That's when that conversation ended.

As she walked away, I could feel myself losing the ability to hold back the things I REALLY wanted to tell this woman - but worry not, I Thrived through it, and kept my mouth shut. Unless she happens to come read this post....Then I guess I'll have to post an update...*smile*

I turned my gritted teeth into a smile and thought to myself... "Blood - Sweat and Tears....No magic oils or pills...." And then walked inside.

Wednesday, August 21, 2013

Giving it to God

School OFFICIALLY starts for ALL of my kids today.  It's been the longest Summer in the histories of Summers.  (I'm smiling when I write this, but the reality is, I'm not kidding)  I'm sitting here in the waiting room of The Children's Hospital.


I'm scanning the faces of the people in this room with me and wondering what THEIR story is.  Do we have things in common (we have at least ONE thing)....Are these people as disheveled as I am?  Are THEY wondering about me and why I am there?

I LOVE and HATE this place.  The smell is the first thing to hit us as we walk through the doors, as the cafeteria is to the left.  No matter what time of day it is, the smell always makes me hungry....That familiar, over-fried, yummy smelling kind of food.

But, the busy-ness overwhelms me....Everyone always seems in a hurry to get somewhere.....And the 7th floor.  The "oncology floor"...That dreaded ride up the elevator....And the desk where you have to check-in and wear a sticker.  Red if you are healthy....Green if you are not.  

Thankfully, we have only been green once...and we were admitted and put in isolation.

I remember each and every ride up and down that elevator....And how Bailey and I like to push every button as we exit...We laugh because we know that now the elevator has to stop at EVERY SINGLE LEVEL....We haven't done that in a while.  In fact, lately the rides up and down have been pretty quiet.

Today is her 'every-3 month-MRI'...

The drive to the hospital was not your typical one.  Bailey talked to me about her fears....and told me she is scared of what the MRI will tell us....She never does this....She's the type of girl who goes with the flow...And doesn't let things bother her.  Or so I thought.

Today is tense.  During Bailey's eye exam....I found myself just waiting for the Dr. to tell me something was wrong.  A week ago, I went to the same Dr. for Braden's 6 month check, and was slammed with the news that something didn't look right.  "Something" was found in Braden's right eye.  Not a optic glioma...but "something".

We were rushed around with the doctor telling us we needed more tests....dilation, pictures, ultrasound....Then ultimately being told we needed a specialist and MORE tests.

But Bailey's appointment went well.  *WHEW*  We got the "See you in a YEAR" report and went to Rachel's appointment....The girls thought it was cool to use the SKYWALK!  Her exam took less than 1/2 hour...and we got the THUMBS UP for her as well!!

This has me feeling excited...Do good things really come in three's?

We take the SKYWALK back to the main hospital to have lunch in the cafeteria.  The girls and I did a "Ketchup Toast" with french fries and talked about how cute the eye doctor was.  (Don't worry Rich, I'm head-over-heels in love with you)

There's this weird thing about waiting rooms.  It's cold in here and everyone just looks sad.

Whatever the results are from this MRI, will be what they will be.  I am practicing the act of giving it to God....Which is MUCH easier said than done.  Having no control over these medical issues drives me crazy....I want to FIX this, and I can't.

Helpless--Hopeless and feeling bound by Neurofibromatosis.  But even in the midst of THOSE feelings, we THRIVE....Knowing that God's plan for us is being lived out.

I'm not a perfect Christian....I do have doubts and questions.  I am sure the even the most faithful of people have questions and doubts....

But TODAY...RIGHT NOW...I am comforted, in a way that's hard to explain.  Good News, or Bad News, I am confident that God will give the strength that is needed to endure it.

TODAY....Giving it to God is easy...and feels good.


Wednesday, August 14, 2013

That's What Makes You Beautiful

So just by chance, I got to watch this video on YOU TUBE about a woman who was talking about beauty.  Ha. Beauty. Something I struggle with every single day!  What does SHE know, I thought.

But then I listened.

And Listened...

This woman who was scarred after a burn accident as a child, hit the nail on the head.

My ENTIRE life, I have been stared at, made fun of, tortured and ridiculed.  All because I didn't fit in with other peoples idea of "perfect".

I was short (still am, go figure), chubby (working on that), wore glasses, had braces....And, had a disorder that while THEN it was so mild,, that doctors didn't even pick it up....But...made me different enough, that I would never EVER be considered "normal".

Mocked. Teased. Tortured.

My prayers back then were NOT for them to accept me and be my friend....They were for ME to change and be like them.  Wait.  WHAT?  Be like them?

Ignorant - Nasty - Judgmental?  

The woman in these You Tube videos described a pivotal moment in her life, when her perspective about what people thought about her changed.  I related with her and her story in such a huge way.

No....I am not scarred (on the outside anyway)  But I AM different.  Having Neurofibromatosis comes with visual confirmations that I am different.  I get judged and have comments thrown at me all the time.  I've had Mary Kay consultants tell me that they could help "cover that up"....Others ask me why I don't get the tumors removed.  Some...Just asked questions about what the bumps are...or if I'm contagious.

Nice huh?

I've let what others think of me, affect EVERYTHING I do. I'm getting better about this....But, as those with NF know...My tumors will only get worse.  The stares, questions, "helpful advice"....Will only get worse.

Feeling beautiful, is a tough one for me.

My husband tells me I am beautiful....I usually roll my eyes and shrug it off as being something he HAS to say....Because I SEE the reality when I look in the mirror.


Here's what I am learning....(not LEARNED....LEARNING!)

The saying that TRUE BEAUTY comes from the inside.....Guess what?  It's TRUE!

I know a LOT of visually beautiful people.  Their gorgeous - flawless bodies....Who are truly shallow, ignorant and flat out MEAN.  I also know visually beautiful people who are nice, just to be fair.

But, get this....I have been given so much more positive attention, for my attitude, and inspirational stories, than I ever have for my weird bumps, or chubby body.

Those that MATTER...See the beauty that is inside me!  I AM FEELING THAT BEAUTY TOO!

Thank you Kelly Falardeau, for your spirit, your attitude and for showing what TRUE BEAUTY IS!