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!