THRIVING THURSDAY!

Operation Sisters Love

Facebook has been a great way for so many people to connect. I have met wonderful families, who are dealing with NF, just like us. It's comforting to know, that we are not the only ones battling this disease.

I met Amie Broeiman. Her daughter, Emma has Neurofibromatosis, and has quite a long list of medical issues, because of it. This is a family that is THRIVING. The challenges are tough, but they keep fighting!

Emma has a big sister who is 13 yrs old. Allie, started a non-profit organization called 'Operation Sisters Love". Allie says she wanted to so something to make the children who are staying in the hospital happy. She told a few people about her idea and started receiving donations. She began making blankets for the children in the hosptial and has made quite the impact!

I was immediately taken with this little girl. She thought of an idea....and made it happen. What way to touch so many lives! This is what THRIVING is all about.....taking the diagnoses of a disorder that can cause so much pain....and finding the positive.

To Allie---Keep up the good work!

http://operationasisterslove.googlepages.com/home

WACKY WEDNESDAY

I have been in a wacky funk lately, sort of obsessing over this NF. My fingers exhausted, from typing in my childrens symptoms....I worry about them. I think about the tumors in their heads, wondering when things will get worse.

I do push that worry aside....for them, but hide within myself with this weight, pulling my heart down.

Rachels brain tumor, is on the left side of the basal gangelia.....motor function and speech can and have been affected by this tumor. All we were told to do....is "watch and wait".....I hate when I am told that...It's like the Drs don't even want to try.

Rachel is doing okay.....My THRIVING little sweetheart is such an inspiration. She is my silly little girl. She loves to be tickled. She loves Mustard and Jelly sandwiches. She is head strong. She is tiny, but strong. She loves DORA. She believes she is a Princess. She melts my heart with her hugs. She snuggles and loves to be held like a baby.

Braden has several tumors at the base of his brain. These tumors cause him major headaches. Braden has been behind his whole life. He is just begining to realize that he is "different"....Kids his own age don't understand....he has been made fun of and treated badly by some of his teachers. He needs a voice --so badly...This school year we have made some significant changes. He has a voice now...he will THRIVE.

Braden hasn't had a headache is a few wks. He takes medicine everyday, to help control this. He is such a sweet boy. MY video gamer. My BIG BOY who still loves to hug his mommy. He loves bugs and isn't afraid to squish a spider for me. He loves the discovery channel and will watch it all day. He has the most blue eyes, I haev ever seen. He loves EVERYTHING spicey.

So why all of this on a WACKY WEDNESDAY? Because I wanted everyone to know, that despite all the medical issues.....we choose to PLAY.....Be silly.....I will spend my life showing these 6 kids of mine.....that life doesn't have to be all about stress and problems......You can look at the WACKY SIDE of things and have fun.

Turn it around Tuesday

I had a photo taken of me recently, that honestly made gag. I couldnt believe that person was me. I have become very unhealthy and hate myself for it. A part of me feels, that the fatness covers the tumors...or makes them less obvious....but in reality....I feel so horrible about my body anyway...that being fat just makes it worse.

Being fat has protected me to some extent from a lot of pain....but in return has caused a lot of scars. I don't like myself at all....I have to struggle to be happy....I'm tired and frustrated.

My 'Turn it around Tuesday', begins with a challenge for myself. (and please feel free to join along) I want to feel better, look better and I want to set a good example for my children. How can I expect THEM to make the right choices, when I dont?

So I have at least 50 pounds to lose. Starting today! I will add a menu bar to the right of the blog and a poundage calculator. I will excersize for at least 1 hr each day. (I can easily fit that in, by just cutting out an hour of TV)

Who wants to join me?

Motivational Monday

I heard a really good sermon today. It was entitled, "Man does not live by bread alone". I didn't hear anything new today, but I heard it in a new way.

The sermon talked about how we as humans require validation....someone to tell us we are worth something....And how people, in general look for that validation in everything but God. I know I do this all the time. I search and search for people to make me feel okay with life.....It rarely works, and usually backfires. I end up longing for more, and feeling worse than before.

We all have a "hunger"....for validation. Some try to fill that hunger using relationships, food, work, sexuality, adventure.....so desperate to fill that need...only to fall short, longing for more. Unmet desires can be very frustrating. God knows every single desire of my heart...if I started with Him, the path would have been easier.

I have prayed and prayed .... trying to show God my desires. I want this NF to go away. I get so mad at it sometimes, that I have often wondered if it was a curse. "How can I possibly live and learn anything from such a horrible disease?" A lot of this anger stems from watching my own mom, blame God for damning us.

But as I grew and learned more about God, I began to turn away and plug my ears, whenever my mother would go on one of her rants about this disease. I refused to listen to it...and would often tell her to shut up. I saw how empty my mother was, and how trying to fill her hunger, was not my job.

Even today, my mother holds so much guilt and anger over this and will probably never let it go. I had a conversation with her on Saturday, we talked about what's happening in my life, and with the kids. I felt hesitant to bring up the issues my NF kids have been facing, but briefly touched on it. Her tone switched and she lets out a heavy sigh -- She swore blamed God again. What she doesn't realize....is that this family is THRIVING WITH NF. But trying to let her that, only frustrates her more SHE has to make the choice to let God in, to heal her wounded heart. The path is her own. Even as hurt as my mother is, God loves her. God knows exactly what she needs......she just needs to let go.

I am being directed and guided down the path I am suposed to be on. I am a woman, who has NF, but if I let that be ALL I am...I am not living up to God's desires for ME. I need to go to Him for my validation.....to make me okay with life. I sure wish I learned this earlier in my life.....but what's so awesome...is that it's NEVER too late!

Discouraged?

It's been a tough day--Kids are sick...and I am feeling very overwhelmed. I read a quote somewhere, that someone compared their life to "climbing out of wet cement". That's how I feel today. Almost paralized as I moved through my day. I did get a lot done though. (Started my NF website, made meals, watered lawn, chkd fevers, laundry, took a walk--seems a lot more when you write it all down) But I still, found myself mentally sluggish.

I was envious today....In doing that, I made myself feel awful. (I guess that's why God commands us not to do this) Even still, I went down this road. I got angry and resentful. I questioned the path that my life has taken.

It's amazing, that a 15 minute conversation, ended up making me question everything. But why? What is REALLY that those other people have, that I do not? I love my life -- and everything/one in it.

It took me a while to snap out of it....and as I look back....I can't believe I let that pull me so far down. Boy have I learned a lesson (Thanks God)

ONE OF MY FAVS

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When things go wrong as they sometimes will,

When the road you're trudging seems all uphill,

When the funds are low and the debts are high,

When you want to smile but you have to sigh,

When cares are pressing you down a bit,

Rest if you must,but don't you quit!
Life is strange with its twists and turns,

As everyone of us sometimes learns,

And many a failure turns about,

When he might have won if he stuck it out
Don't you give up though the pace seems slow,

You might succeed with another blow,

Often the goal is nearer than,

It ever seems to a faint and faltering man,

Often the struggler has given up,

When he might have captured the victor's cup,

And, he learned too late, with a groan and frown,

How close he was to the golden crown.
Success is failure turned inside out,

The silver tint of the clouds of doubt,

You never can tell how close you are,

It may be near when it seems so far,

So, stick to the fight when you're hardest hit,

It's when things seem worse that you must not quit.