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...