MRI Day

"Close your eyes...Hold VERY still, and dream a fantastic dream!" 

-Mommy

This has been the LONGEST week in history, I am SURE of it!  When we got the Rachel news, that her eye site had changed "dramatically" since her last visit...It was like we were holding our breath, waiting for the next step.

I KNEW an MRI was going to be ordered (a VERY normal thing when you live with Neurofibromatosis) But the waiting and waiting and WAITING had cut my fuse VERY short.  All the "i's" must be dotted, all the "t's" must be crossed. (of course, I get it)

Thursday couldn't get here soon enough....I just wanted the MRI to be over with, results to come in and for us to do SOMETHING.

Rachel was SOOOOO excited for her MRI.  Alone time with mommy, a special treat after...and in HER words, an opportunity to be like Alice in Wonderland! ( I told Rachel she was like Alice, when she did her very first unsedated MRI...and it stuck )

I've learned a LOT from my kids, when it comes to living in the NOW....They have taught me to focus on the good, and worry about the bad, when or if it comes.

The MRI results MAY show nothing....or they MAY show something...What I focused on today, was that my little girl wasn't worried at all....And I took HER lead!

Therefore do not worry about tomorrow, for tomorrow will worry about itself. 

Each day has enough trouble of its own.

Matthew 6:34

THRIVE ON!

Camp WapiYapi

Wapiyapi is a Colorado based nonprofit organization that offers a community of hope and support to families affected by childhood cancer. Wapiyapi hosts free summer camps and year-round family retreats to provide a respite for children with cancer and their families. 

Yes...We "qualified" for a "cancer camp".....This made me both excited and uncomfortable as the kids prepared for their week long stay in Estes Park, Colorado.  But when we got there...I saw anything but a "Cancer Camp."  

I saw happiness, joy, hope,  and acceptance, all wrapped up in a wonderful place called WapiYapi. 

Riley and Lauren (camper companion)

I was good and did not contact the kids at all, while they were gone...And when I picked them up, the two could not stop talking about the endless fun they had that week.

Riley was in tears...When she reminisced about the last 5 days....

"I had sooo much fun...I never wanted to leave!"

 This chipmunk climbed up onto Bailey's lap...Just for a snack!  Brave lil thing!

Summer Swimming!

I love Summer days, when the hustle and bustle slows down enough for us to go to the pool.  The pool is where EVERYONE feels good...and the pain, nausea, frustrations, and anger all just melt away!

 Brookie even learned some swimming!

Riley looking adorable!

The other kids were busy swimming around, avoiding my camera...LOL

When Things Go Wrong, As They Sometimes Will.....

Today we drove to the Children's Hospital for the 3rd time this week. (Is it REALLY only Tuesday?)

 Today's visit was for Rachel, and a check-up with the Ophthalmology department.  My frustrated mood from the morning, plummeted even further when I watched as Rachel was unable to read the letters that reflected on the wall 10 feet away.

She tried so hard.  Squinting...and squirming in the over-sized chair.  She started reciting letters.  

E?---F?---S?---L?...But those weren't the letters on the wall.  Another set of letters.  "You're doing great Rachel!" the Dr. turns her swivel chair towards my brave girl  (who seems to think she guessed all the letters on the wall right!  And a sneaky sense of "wow-ment" fills her eyes)

The Dr. walks her swivel chair close to me and asks me if Rachel could be overly tired today.  "No...I don't think so." I responded....In my head I was thinking that I just wanted to tell her "YES!", in hopes of giving a reason for the sudden decline in Rachel's vision.

But THAT reason would be too simple.

The doctor told me that Rachel's eye exam has left them stumped.  In the Winter of 2009, we were told that Rachel would be "legally blind" by the time she was 10.....A year later, we got THIS NEWS .  An amazing and wonderful thing for our family to hear.

The scans since have shown "stability"!  

A simple word...But one that causes joyous excitement in our world.

But today...We didn't hear "stable".  

We heard our doctor tell us that Rachel's vision has worsened since the last visit. 

This visit was like witnessing a car wreck...And I felt that helpless feeling that is all-too-familiar.

I wanted to scream.  I wanted to fight against the reality that Rachel may face blindness one day.  There is no "jaws of life" that can free us from this possibility...And as angry and helpless this makes me...I have to remember who is control of this situation.

Rachel tells me as we skip down the hall, after the appointment ..."Did you know that people can see things with their hearts?"  "How do you know?" I ask her...."'Cuz Mama, when I close my eyes and it's all black....I can still see how much you love me!"

My God.  

How can I possibly be angry?  How can I question?  How can I ever doubt?

THRIVE ON!

Let the Summer Begin!

Summer is off to a GREAT start!  Yesterday Rich and I drove a couple hours north to drop Bailey and Riley off at camp...The whole way there, the girls told us how excited they were to be going to camp.

I am excited too!

When we got to the camp grounds, I immediately thought of MY first time at camp.  The layout of the cabins was very similar to that of Camp Rainbow...and I began wishing I could just stay with my girls and relive some of my memories.

Like Camp Rainbow, Camp Wapi Yapi is for kids going through cancer treatment....and their siblings.  Just the fact that Bailey qualified for this camp made my stomach turn.  But, as a family we chose not to focus on WHY Bailey was going...And simply chose to focus on the fun she was going to have while she was there!

The girls said their goodbye's ...Pushing me to "GO ALREADY!" and hinted for me to stop embarrassing them with my sappy hugs and kisses. :)

We were a few minutes away from a famous building that I have soooo wanted to see, since we moved to Colorado, so Rich full filled a 'bucket list' item and drove me to the Stanley Hotel.  The hotel that was featured in the Stephen King movie 'The Shining'.

I learned that this was where Stephen King got the idea for the book...And also learned that the movie wasn't filmed exclusively there....A different hotel was used for the inside shooting of the movie...But it was still way cool to visit this place!

So with Bailey and Riley gone to camp, this gives ALL OF US a break from the worry of chemo, MRI's and the dread of waiting for the next round possible bad news.  A time where fear takes a backseat...And Swimming, slip and slides, and popsicles drive us to a place of happiness.

The worry is there...and whirls around me all the time....But summertime is here and allows for a break in the worry, as I watch the smiles on my children's faces.

Thrive On!