Ok....This is SAD!

I don't know what's wrong with me.  I just can't seem to get myself motivated to blog...or be active in NF groups anymore. When I try....I witness so much negativity...so much anger....And I don't know, just so much misinformation.  I want to jump in and say stuff....But, I just feel like the effort isn't worth it.

That HAS to change.  I mean, what has 'THRIVING with NEUROFIBROMATSOSIS' become?  

I'm going to wipe off the cobwebs and just do this.

I AM still 'THRIVING'  - Just not as actively.  (how dumb)

Quarantine is over...and basically, things are going back to 'normal'.  And I have been working as a preschool teacher for over a year,  I love it.  When I say this...I don't mean, it's a great job....I mean...It's a PERFECT job!  

I have wanted to this exact thing, since I was a young pre-teen, going to work with my mom.  She loved what she did....and it showed.  

So when this opportunity came at BH....I was so excited!

Speaking of my mom.

She has been dead now since Dec 1st of this year...And I just can't get used to the idea that she's gone.  

I hate death.  I hate that things just keep going.  I miss her so much.  I want to call her up- to ask for advise - I want to thank her for all of the really cool resources I am using, thanks to her.  I literally inherited an ENTIRE schools worth of supplies!

I'll do a separate post about my mom...and what happened to her.

For now, I re-joined a few NF groups....and I will slowly start to get back involved.  

Quarantined!

My "last day" of work was March 20th...Which means, we have been quarantined for ALMOST a month.  Time flies when ure....

Nope....Not having fun!

Isolation sucks.  Period.

With 6 other people...I'm not really "Isolated"...Like ALONE...But Alone, together, if that makes any sense at all.  Wow....I can tell I haven't been OUT very much!

It's kinda weird...When you have ALL-THE-TIME-IN-THE-WORLD to do things....How busy you become. 

How are YOU doing in isolation?

Our NEW Normal

So...Now that we have nothing but time, I am determined to re-start, re-vamp, re-Something my role in the NF community.  I feel bad.  I let life get in the way, and in doing so, I let what's really important, slide to the way-side.

This whole COVID-19 thing seems surreal.  It's like I'm watching some terrible Netflix movie...But sadly, I can't turn this movie off, or switch the channel.   It's affecting REAL people, In REAL ways....and it's scary.

Almost 2 wks ago, the Child Care Center I work at closed its doors...With the promise that the workers who CHOOSE to, could begin doing an 'At Home' service.  I was excited about this, and to be able to bring home an income.

Well....Things changed, and that option was no longer an option.  Booo....! I was however lucky enough to get in contact with one of our families at the center, who brought me into their home to watch their boys -  But with things escalating with COVID...this lasted a week.

Families like ours - who live LITERALLY pay check to pay check are being hit HARD.  We have no savings, and no rich relatives...So now, I'm scrambling, literally applying for  jobs...ANYONE that will have me....and in the meantime, my heart is breaking. 

When I left the theatre for the Child Care Center, I took a pretty big pay cut....But...to me, it was worth it.  FINALLY I would get my foot in the door, doing something I LOVE.  The center is great, and I love the "fill-your-bucket" style they have.  But, now I'm feeling like this path is disappearing - Being taken away...Like....It was too good to last.

Do you ever feel that way...?  Like the good things never seem to last...? 

Brain tumors are stable today....But in 6 months, you find out you need surgery, chemo....

I've been there friends.  I'm there now. 

Sometimes....Living in the moment is hard.  But you can take comfort in knowing, you aren't alone.  The path can be scary....The unknown brings anxiety, uncertainty -

And this brings me to my point.  That's the WHOLE purpose for this blog.  To let you know that  you ARE NOT alone.  I''m with all of you, in this crazy and scary time.

I'm reaching out.  Grab my hand. 

THRIVE ON!

Distractions!

It never fails.

It's constant - Predictable.

Every. Single. Time.

I get all prepped to write.  Headphones.  Good music.  A good blog topic.

BAM.

Phone rings.  Toilet floods.  Work calls.  Someone's at the door. 

UGGGHHH! 

It happens to my hubby too. 

So many things pull me away from this blog.  It's like a force field.  It's something I truly enjoy, but I have to work so hard to make anything happen with it.  At least I recognize it, right?  I recognize and continue to fight the force that keeps me away.  But that doesn't mean I'm always successful at pushing through the force.

When this blog was born...It was initially a way for me to journal our way through the medical appnts, frustrations, triumphs of Neurofibromatosis...I never imagined that people would draw strength from our experiences ...and our attitude.

I need to find a way to get back to the way it used to be. 

Life for us - at least when it comes to NF, isn't "better"....It has just been "stable"...which, don't get me wrong, is fabulous....But I need to get it through me head, that people can still get something from this blog, even when things are STABLE....In fact, maybe they would get MORE from it, knowing that NF isn't just a series of complications and frustrations.

This is where we are. 

STABLE.

We have learned to just stay in the NOW.  Looking back, we can be satisfied with how far we have come.  And we just focus on the day.  Today - we are good.

Thrive On Friends!
K

What Now...?

I've been struggling guys.  I'm not sure we have been properly armed.  For my kids' ENTIRE LIVES...we have been seen by Children's Hospital.  Even the kids without Neurofibromatosis.  It was out one-stop-shop.  We felt safe there....and all of our issues for the most part were addressed, in some form.

But now...Bailey is 23, Braden is 21...And basically we are being told 'Good Luck' and pointed to directions that aren't as helpful.

I, myself don't have an 'NF DR."  No one sees me specifically for the symptoms of Neurofibromatosis....Same goes for my adult children.

I wish there was a proper transition -

What are we supposed to do....?

Lately, Bailey has been complaining of headaches....Like call-in-sick-to-work headaches.  And I struggle with how serious to take it.  On one hand, it could be something serious...Like her tumors are starting to grow...or a new tumor....or any number of things....But on the other hand...she has been stable for so long...maybe it's nothing...!? 

Parents of adults with medical needs....How do you do it..?  How serious do you take things...?  How serious do doctors take things..?

I, like you am just trying to figure things out as I go...And HOPEFULLY get some answers along the way.

Kinda Frustrated here...

LMK If what you guys do for your adult children...I'd love to hear some ideas!