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 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.