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.

Yes AGAIN!

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.

THRIVE ON!

Here We Go Again!

This week we re-start chemotherapy.  A three week break was nice.  The Vinblastine, although lower in dosage then the last treatment, has a harsh affect on Bailey's body. She has lost about 15 pounds, and also lost a considerable amount of hair.  She has mouth sores, and body aches.  Her skin is blotchy and pale.

I think these side affects bother ME, more than they bother Bailey.  I see my daughter transforming, it's scary.  But, she seems almost unaware of all that is happening...All that could  happen.  Maybe that's a good thing, I don't know.

The whole world of chemotherapy, is a strange one.  Anyone who has experienced any part of this world, knows what  I'm talking about.

It's like the moment you walk into the hospital and ride up the elevators, everything "normal" stops.  Your world morphs into something unrecognizable.

Life becomes all about numbers, and needles.  Good days and bad days.  High fevers and hospital stays.

Dealing with all this "stuff" is hard for even the strongest spirit.  Sometimes, I silently ask God what the point of all of this is.  Why Bailey?  Why now?  And when will we finally see the light at the end of the tunnel?

It seems like ever since 'Thriving with Neurofibromatosis' began...The whole basis behind it gets tested, over and over and over.  How can I keep up?  How can I keep my focus that the "light at the end of the tunnel", lives inside each one of my kids?

I guess the answer is to just simply do it....and as always THRIVE ON!

Are You There God? It's Me Kristi

"Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you: 8 For every one that asketh receiveth; and he that seeketh findeth; and to him that knocketh it shall be opened."

Matthew 7:7-8

I have always prayed.  Even at 7 yrs old, I prayed that God would make ME sick, instead of my brother....and that my mommy would be happy again.  

Every night, I'd crawl into my small closet, in the bedroom that my mom and I shared.  I'd close my eyes and talk as quietly as I could to a God who my mother called a monster.

I refused to believe that God was to blame for all the problems....All the sickness that our family was enduring.  

So I prayed my prayer in desperate silence.  But things only seemed to get worse.  My brother's issues with Neurofibromatosis were progressing and my mother was spiraling into a deep depression.

Was God hearing my prayers?  Did He care at all about me?  Why wasn't He fixing my problems? This "all-powerful being" was ignoring me!  I wanted Him to take away the pain...the sickness, but He wasn't doing anything!

After my brother and I were taken away from my mother, I vowed to never talk to God again.  He was ignoring me...so I was going to ignore Him.  "Ask and you shall receive?"  Ya right!

It wasn't until I was an adult that I began to understand the way God works, but I still struggle with it.  I often pray prayers that sound more like demands, than requests.  "HEAL ME!"  "HEAL MY CHILD!"  And I find myself questioning the plans He has for my life.

Where is the trust?  The faith that I proclaim to have?  When God doesn't answer your prayers, it often means that HIS answers are not YOUR answers.  This has been a hard thing for me to accept and I find myself feeling as alone and helpless as I did when I was a child, praying in that closet.

When I pray now, even though I still want the answers that I WANT, I thank God for what I have, then leave the rest up to Him.  This is not to say that I don't send up requests....'Cause I send up many, It's just I have given up the control I THOUGHT I had to begin with.

The greatest reason that some prayers go unanswered is because many give-up praying and believing when the answer they expected never arrives, and they were so busy looking for their answer they never heard HIS answer. As long as we have the promise of God’s Word, be patient and persistent - keep believing, and don’t quit, no matter how long it takes! God has a “due season” when He will bring the answer to pass.