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.


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.