ready or not...

This is really happening.
What have I done?

Just got off the phone with the pilot who is volunteering his time and plane for my first trip to FL. So Amazing.

A Cessna 411. 4 1/2 hour trip. Leaving from Tulip City airport at 10 AM this Sunday, September 20. Clinic is on the 21st and we'll fly home that night.

Am I hopeful? Hopeful for a cure for this disorder? I must be. I don't think I'd go through this "rigga-ma-roll" for nothing.

And He provides. He gives me the hope I need.

Right when it's happening...

fly, fly away

Every flight I need to go by faith that a pilot will sign up for the particular visit to the clinic.

This is the case for the trip on the 21st. I am at their Mercy...

Wings of Mercy, that is.

10 days and counting for a pilot willing to fly down to Tampa, FL.

...just need faith as small as a mustard seed.

This is nerve racking.

...and away we go...

Back in the saddle again...an email from the clinic:

Here's a tentative schedule of your visit dates. We'll try to stick to them as best as possible.

9/21; 10/26; 11/23; 12/10; 1/18; 2/15; 3/8

The second sentence freaks me out.

One day at a time.
*sigh*
Moment by moment.

Now if I can figure out how to stay down there January, February and March...FA and winters in Michigan do NOT get along.

hot off the press!

This is a reply email from the administrator at the University of Florida as I sent an email today asking for any updates...

Hi Holly, The board met on Friday and yesterday to finalize the changes. We submitted it to our campus review board this morning and urged them to approve it as quickly as possible. I'm hoping no more than two weeks. We will let you know asap when we find out it's approved so we can finally get you in.

So, I am not forgotten. How quickly I tend to forget that.

And being the nosey person I am, I asked if she was able to share what changes had to be made. Quite honestly, I feared that maybe they needed to shave my hair off and cut my head open or maybe one of the participants committed suicide. (just wanted to be prepared!)

Here is her reply to my curiosity:

Hi Holly, The changes just have to do with checking in more often on the phone at the beginning of each phase. Basically we just get to bother you more often. :)

Seriously.

And where is that scripture that says, "do not worry about tomorrow..." The fro remains!

By the way, as I am eating humble pie, "The Eye is on the Sparrow" is playing on my iTunes.

so I wait...

Everything seemed to be happening with out a "glitch"- that should have been my first clue. I had the dates of the clinical and the schedule of when the investigators would phone me to record the findings. My good friend, Lynne, joined in on the excitement and agreed to fly down with me for the first clinical scheduled for August 31. I was matched with a pilot and the hotel room was reserved for the night. Wings of Mercy was planning to fly us home on the 1st of September.
That was until I received this email from the University of Florida one week before I was scheduled to leave:

Hi Holly,

I have some disappointing news. Unfortunately we have to cancel your appointment until a later date. The study investigators met yesterday and determined they wanted to make changes to the study and until those changes are approved we can't enroll anyone else. This means we have to cancel your appointment on Monday and when we get approval, we'll reschedule you. We will be able to reimburse you for the travel expenses you already paid for this flight, just send us a copy of your receipt or confirmation. I am very sorry about this. It certainly wasn't expected.


This news was a kick in my gut. I was shocked how violently I reacted. If you know me well, I can not talk and cry at the same time. This was evident in my first phone call to my parents after I received the above email. My dad answered the phone. "Dad, they called off the study!" It's something about the sound of your parents voice that bursts the dam holding back the tears. "WHAT?!", my dad replied. And that's all it took for the dam to break. "Holly? Holly?!" At this point I attempted to form words between my sobs. "Holly, I can't understand you. I'll tell mom to stop by."
Click.
I don't blame my dad. My reaction surprised me. At that moment I was weary of the fight. I was disappointed that the study was postponed for sure but more than this study, I was sick of Friedreich's Ataxia.
So after a day of allowing this "glitch" to defeat me, I woke up the next day with a reminder that "His mercies are new every morning. Great is His faithfulness."
I'm not going down with out a fight.
And so I wait...

a mountain that is an ant hill...to Him.

While I got accepted to the clinical study in Florida, the hurdle of transportation was lingering. I honestly didn't even think I would be this far in the process so I knew I needed to keep pluggin' away. God can move mountains, I kept repeating to myself so I knew He could get me down to Florida once a month for 8 months. I was at a cook out with some of my close friends and I hesitantly told them about the clinical study. "But it's in Florida and I have to get down there once a month." I think I expected them to agree with my dilemma and allow my doubt to take root. Instead one of me friends replied, "Holly, look into Wings of Mercy. That is why the exist. You are the perfect candidate." I looked around the table hoping to lock eyes with someone who showed any signs of doubt but instead all of my friends were nodding in agreement. So, another round of phone calls and emails and a packet of application; I waited.
In two days I was told that Wings of Mercy accepted me for a year of free flights down to Florida. Unbelievable.
He does move mountains.

He makes me wanna be...

I went into full gear for a solid month. Endless phone calls, emails and doctor visits. In the phoning process I discovered the clinical study in PA was full. My curiosity got the best of me and I called down to FL. The study allows 16 FA patients. 8 ambulatory (can walk without assistance 25 feet) and 8 non-ambulatory (which obviously was me). Before I knew it I was "pre-screening" over the phone with the administrator at University of Florida. Answering the easy questions, do I smoke? have a history of clinical depression? am I taking any medication? Not known for being a good test taker, I was pleased to hear that I passed.
Wait! Passed what? What did this mean? I soon discovered that it meant I had to pass the formal screening. Blood work (TONS of it) EKG, echo cardiogram and a visit to my primary physician. The game was on and I was in "do mode" to pass this screening. Not really sure why but it was a challenge to try figure out all the insurance stuff and make all the doctor appointments. But I did it. And then I had to wait for the researchers to say I passed. And I did.
Wait! Now what? This meant I was accepted into the clinical study for FA at the University of Florida.
I felt a little dose of hope. There may be treatment or even a cure for those diagnosed with FA. A little dab would do me. A dollop of hope.
I didn't stop to breath and think of the ramifications of it all until one of my best friend wrote this in her email when I told her I had no clue what I was doing but I got accepted in a clinical study for FA:
"I am so proud of you, Holly. You are brave to do this..."
It was at that moment the tears began to flow. Not because I felt courageous but that God answered my plea in my boredom. My life, lil' 'ole me, may help find a cure for this awful disease that has robbed me of so much. But one thing I know and am confident of, FA is not going to steal my joy. Just like the song, BRAVE by Nicole Nordemon, "I think I just let go".