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 :)