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!

Eye Eye Eye!

I haven't written much about Rachel lately...mostly because her symptoms have remained stable. She is a healthy thriving child, who has Neurofibromatosis.

The main concerns with my tiny bundle of energy has been her eyes. While she does not have an optic glioma, she does have a brain tumor, and narrowing her her optic pathways. This being a main cause for diminished vision.

Yesterday, Rachel came home with more than "normal" crossing of her left eye. I thought she was being goofy making her eyes cross, but as we walked home from school, it was apparent that Rachel had something going on.

I called her pediatrician and she was seen within the hour (wow!) This was Rachel's first visit with this Dr. So we had to first unload Rachel's complicated medical history in regards to NF. This dr wasted no time, in referring us to the Children's Hospital in Aurora where we were to be seeing the Ophthalmology department, the next day.

So, this morning, after Bailey left for school, we headed to the Orthodontist, for an assessment for braces. Keeping THIS appnt was important, and I kept watching the clock, knowing we had a very important Eye visit.

After the orthodontist, we drop Riley and Braden off at their schools and head to Aurora.

A thorough examination showed that in fact the crossing was an issue. Rachel did well with the initial exam but typically her crossing does eventually go back to normal. Not this time....this time her eye seemed to be stuck in a crossed position.

Rachel begged the doctor, "Please don't make me wear the patches, I don't like them!" But this is very likely to happen...even though the last time we went through this, it didn't seem to help much.

We got a new prescription which is for bifocals, and raced to get my kindergartner to school on time. When I got home, I was looking forward to some time to unwind and get some laundry done....then the phone rings.

We were ordered to go to the North Campus of the Children's Hospital for a sedated MRI of Rachel's orbits and optic pathways. Ugh! I go and pick Rachel up from school and we head off to the hospital.

The MRI took about 50 minutes and we waited while the sedation wore off. Again I raced to the school, just in time to pick up the kids. I didn't really even have time to think today...It was all about racing from point A to point B.

I have no idea what's going on with Rachel's eyes...but I do know we are going to find out. It helps that she is her funny, silly, ornery self. Her spirit is what keeps me going. The fire inside her makes me know that no matter what she faces, she will get through it with no problem.

We are a family who THRIVES. Things are placed before us, and we can choose to look at these things as problems, or we can choose to see them as simply things to overcome.

Thrive On!