Thursday, August 29, 2013

Did You Have Surgery...Or Something?

Ok....Just forewarning you that this post may be a little ranty....(everyone deserves to rant every now and then)  

So, I'm outside unloading the groceries from our van....When this woman - (A neighbor, who frequents this blog, and I'm totally putting myself out there when talking about this, but I really don't care) Stops - Waves and says "Hey"....."Wow, you've lost weight....You have surgery or something?"

"No" I smiled, "Just a lot of hard work"

"No way...Come On.  You're joking....You had to have had surgery or something....What kind of weight loss pills are you taking?"

"Nope no surgery" I said, "just changing what I eat, and exercising."

"Ooooookaaaaayyyyyy." She walked away, rolling her eyes. Clearly, she didn't believe me.

She probably hasn't seen me in six months, and I've changed a lot in that time, both in weight and shape, and in the last 18 months I'm down 112 lbs. Still can't believe it when I say it to myself. At this point, I'm working on exchanging fat for muscle--toning up.

As for this woman? She's the same gal who sells all these herbally - oily - "CURES" for this or that, and accused me of not caring enough about my daughter to purchase her over-priced....No-Proof-to-cure-ANYTHING crap.

Yes---She ACTUALLY said "You must not care enough about Bailey, to want to AT LEAST TRY this stuff."

Sure, she really doesn't understand Neurofibromatosis. (Heck, I've run into DOCTORS that don't really understand it, and actually had to convince them I HAD NF.) She doesn't understand that there is NO "cure".  No magic potions, oils or diet will ever take this disorder away from me or my family....And I am sure she just wants to help....But to accuse me of not caring enough....That's when that conversation ended.

As she walked away, I could feel myself losing the ability to hold back the things I REALLY wanted to tell this woman - but worry not, I Thrived through it, and kept my mouth shut. Unless she happens to come read this post....Then I guess I'll have to post an update...*smile*

I turned my gritted teeth into a smile and thought to myself... "Blood - Sweat and Tears....No magic oils or pills...." And then walked inside.

Wednesday, August 21, 2013

Giving it to God

School OFFICIALLY starts for ALL of my kids today.  It's been the longest Summer in the histories of Summers.  (I'm smiling when I write this, but the reality is, I'm not kidding)  I'm sitting here in the waiting room of The Children's Hospital.


I'm scanning the faces of the people in this room with me and wondering what THEIR story is.  Do we have things in common (we have at least ONE thing)....Are these people as disheveled as I am?  Are THEY wondering about me and why I am there?

I LOVE and HATE this place.  The smell is the first thing to hit us as we walk through the doors, as the cafeteria is to the left.  No matter what time of day it is, the smell always makes me hungry....That familiar, over-fried, yummy smelling kind of food.

But, the busy-ness overwhelms me....Everyone always seems in a hurry to get somewhere.....And the 7th floor.  The "oncology floor"...That dreaded ride up the elevator....And the desk where you have to check-in and wear a sticker.  Red if you are healthy....Green if you are not.  

Thankfully, we have only been green once...and we were admitted and put in isolation.

I remember each and every ride up and down that elevator....And how Bailey and I like to push every button as we exit...We laugh because we know that now the elevator has to stop at EVERY SINGLE LEVEL....We haven't done that in a while.  In fact, lately the rides up and down have been pretty quiet.

Today is her 'every-3 month-MRI'...

The drive to the hospital was not your typical one.  Bailey talked to me about her fears....and told me she is scared of what the MRI will tell us....She never does this....She's the type of girl who goes with the flow...And doesn't let things bother her.  Or so I thought.

Today is tense.  During Bailey's eye exam....I found myself just waiting for the Dr. to tell me something was wrong.  A week ago, I went to the same Dr. for Braden's 6 month check, and was slammed with the news that something didn't look right.  "Something" was found in Braden's right eye.  Not a optic glioma...but "something".

We were rushed around with the doctor telling us we needed more tests....dilation, pictures, ultrasound....Then ultimately being told we needed a specialist and MORE tests.

But Bailey's appointment went well.  *WHEW*  We got the "See you in a YEAR" report and went to Rachel's appointment....The girls thought it was cool to use the SKYWALK!  Her exam took less than 1/2 hour...and we got the THUMBS UP for her as well!!

This has me feeling excited...Do good things really come in three's?

We take the SKYWALK back to the main hospital to have lunch in the cafeteria.  The girls and I did a "Ketchup Toast" with french fries and talked about how cute the eye doctor was.  (Don't worry Rich, I'm head-over-heels in love with you)

There's this weird thing about waiting rooms.  It's cold in here and everyone just looks sad.

Whatever the results are from this MRI, will be what they will be.  I am practicing the act of giving it to God....Which is MUCH easier said than done.  Having no control over these medical issues drives me crazy....I want to FIX this, and I can't.

Helpless--Hopeless and feeling bound by Neurofibromatosis.  But even in the midst of THOSE feelings, we THRIVE....Knowing that God's plan for us is being lived out.

I'm not a perfect Christian....I do have doubts and questions.  I am sure the even the most faithful of people have questions and doubts....

But TODAY...RIGHT NOW...I am comforted, in a way that's hard to explain.  Good News, or Bad News, I am confident that God will give the strength that is needed to endure it.

TODAY....Giving it to God is easy...and feels good.


Wednesday, August 14, 2013

That's What Makes You Beautiful

So just by chance, I got to watch this video on YOU TUBE about a woman who was talking about beauty.  Ha. Beauty. Something I struggle with every single day!  What does SHE know, I thought.

But then I listened.

And Listened...

This woman who was scarred after a burn accident as a child, hit the nail on the head.

My ENTIRE life, I have been stared at, made fun of, tortured and ridiculed.  All because I didn't fit in with other peoples idea of "perfect".

I was short (still am, go figure), chubby (working on that), wore glasses, had braces....And, had a disorder that while THEN it was so mild,, that doctors didn't even pick it up....But...made me different enough, that I would never EVER be considered "normal".

Mocked. Teased. Tortured.

My prayers back then were NOT for them to accept me and be my friend....They were for ME to change and be like them.  Wait.  WHAT?  Be like them?

Ignorant - Nasty - Judgmental?  

The woman in these You Tube videos described a pivotal moment in her life, when her perspective about what people thought about her changed.  I related with her and her story in such a huge way.

No....I am not scarred (on the outside anyway)  But I AM different.  Having Neurofibromatosis comes with visual confirmations that I am different.  I get judged and have comments thrown at me all the time.  I've had Mary Kay consultants tell me that they could help "cover that up"....Others ask me why I don't get the tumors removed.  Some...Just asked questions about what the bumps are...or if I'm contagious.

Nice huh?

I've let what others think of me, affect EVERYTHING I do. I'm getting better about this....But, as those with NF know...My tumors will only get worse.  The stares, questions, "helpful advice"....Will only get worse.

Feeling beautiful, is a tough one for me.

My husband tells me I am beautiful....I usually roll my eyes and shrug it off as being something he HAS to say....Because I SEE the reality when I look in the mirror.


Here's what I am learning....(not LEARNED....LEARNING!)

The saying that TRUE BEAUTY comes from the inside.....Guess what?  It's TRUE!

I know a LOT of visually beautiful people.  Their gorgeous - flawless bodies....Who are truly shallow, ignorant and flat out MEAN.  I also know visually beautiful people who are nice, just to be fair.

But, get this....I have been given so much more positive attention, for my attitude, and inspirational stories, than I ever have for my weird bumps, or chubby body.

Those that MATTER...See the beauty that is inside me!  I AM FEELING THAT BEAUTY TOO!

Thank you Kelly Falardeau, for your spirit, your attitude and for showing what TRUE BEAUTY IS!