shadow of His wings.

I was talking with a friend yesterday and he asked me a highlight of the trip. I can't pick just one. It certainly wasn't the awful stench on the flight home. The flight attendant and I bonded as I had my nose covered with my scarf and our eyes met as she gasped for fresh air as she approached the front of the plane. Wow- I am a bit gaggy thinking about it! Funny, nonetheless.
One of the many highlights from the trip was meeting another patient in the study. The first study I was involved in at USF, I never met any of the other participants. Our appointments  can be staggered and we may start the testing/medication at different times. Because of confidentiality, the team doesn't discuss other patients. I knew there was someone else there at this visit, I just didn't know the who, what, when, or where.
That soon would change on the third day of testing as we had a 12 hour day scheduled. Our rooms were adjacent and our breaks between our blood draws overlapped each other. Myra and I (the friend who traveled with me) would spend every minute we could in the warm sun during our free time. It was during one of these breathers did Greg introduce himself. We immediately bonded. I quickly formed a space for him and his family in my heart. His diagnosis of FA is new. Because of this, I found  myself pressing the rewind  button and a flood of memories filled my mind. And four days later they still are occupying my thoughts. I've spent the morning crying. Tears of anger, of hope, of disappointment, of hope, of fear, of hope, of sadness, of hope, of loneliness, of hope, of silence, of hope, of confusion, of hope, of grief, of hope...did I mention hope?
One of the memories I have during the early diagnosis of FA is with one of my best friends, Tricia. We were room mates in college. Although my diagnosis was confirmed during undergrad, this conversation occurred after we graduated. She spent the weekend at the duplex I was renting at the time. I can't even remember what we did that night but we ended the night talking. In a simple yet thoughtful/concerned question Tricia asked, "Holly, what if this gets to a point you can't use your legs anymore?" I am sure I responded with a pat answer at the time. But here I am, 13 years later, wheel chair bound and only using my legs to transfer. And I honestly still don't know how to answer her. Some may call it ignorance. I think I refer to it as self-preservation. The most important thing I gained from that gut wrenching question was the comfort and confidence that someone was going to walk this ugly road with me. At that moment, I knew she would be in my corner nestling in with the unanswered questions.
My friend Tricia represents the MANY people in my life that has made this horrific journey beautiful. So beautiful.
And that is my hope as Greg and I and 14, 998 others who are in the family of FA will experience...the beauty.
In the meantime I will rest in the shadow of his wings and wait for a cure.
"Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed." Psalm 57:1

on a break from the 12 hour blood draw

My next visit is scheduled for the end of this month. Praying like crazy that pilot will be available for Wings of Mercy.