evolving.

I read a book during my visit to USF last week. Well, I didn't just read it, I devour it. I bought the book as maybe a tool for one of my clients and when I started it, I completely forgot about the person I wanted it to benefit and immersed myself in the book. I love to read. However, it has been awhile for me to get lost in the story of the book I have been reading. I have three books going right now. Although they are all good, I don't think about them through out the day. I am not dreaming about the characters and I am not fooled into thinking that I am actually part of the story.
This book I did. It came alive and I wanted more than anything to be a part of what I was reading. I think that is why I cried when it was finished. For real, I cried. And ever since I turned the last page, I have struggled. This book wreaked havoc on my journey in this life. I am questioning what God does. Hear my heart. I am wondering about the acts of God and not who He is. I still believe in Him. I remain in my love for Him. I am committed to grow in my relationship with Him. That is why I need to be okay with being baffled by what He does or better yet, IS doing. It would be appropriate to insert a quote from the book right now but I have already loaned it out. I am not sharing because I am generous like that. I passed it on to those in my circle, in the hopes that they will be messed up like me after they read it.
It was timely for me to read this as I embark on a journey with FA that is going to change my life.  And I don't mean the kind of change that will make me walk. Although that would certainly be a bonus, it is not the reason I am doing this study. I want to be in the moment. The process. The story. I long to be comfortable with the questions. I desire to welcome the silence. I want to embrace the tears. I'll face the fear head on and I'll find a place for the anger.
I am messed up.
And not because I have FA.
I am messed up because I'm trying to figure out what He wants me to do because I have FA.
Although this journey isn't pretty all of the time, I'll attempt to focus on Him in my story.
We all have one.

the story continues...

I am not even sure where to begin. I am a bit disoriented, very excited and completely humbled. Yesterday I was in a pool with 80 degree weather and tonight I am freezing as I wait for the heat in my home to rise. I returned home from the final screening at USF. The day consisted of blood work, echo gram, EKG, neurological tests and vision screening before I got the thumbs up to be involved in a 12 month clinical study. It wasn't until Dr. Z told me I was in did I feel a two hundred pound weight lift from my chest. I am so thrilled that this can be a part of my story and I have the opportunity to hear so many others story along the way.
Just like the girl at the hotel who told me a lot of stuff she is going through in life. It broke my heart. As she left my table and my mom returned with more napkins, she asked me if I had talked with her before because she was being that candid. I replied that I had just met her while we were eating breakfast. It's so apparent that we all have a story and if we happen to be so lucky to have someone listen to ours, we are blessed.

Dr. Kelly, me and Dr. Z and of course, Barkley at the final screening Monday.

I am so humbled that Dr. Z and Dr. (yea!) Kelly are part of my story. Because of them and so many others doing the hard work for a cure for FA, I have hope!

God Of My Everything

I turned the big 4-0 on New Year's Eve. And this year, surprisingly, I was looking forward to celebrating. Some of my dear friends made reservations for dinner at a restraunt I had never been and we planned to bring in the New Year at my house. My body had other plans. Instead of dinner with friends, it was a visit to the ER with another kidney stone.
Although it is still difficult to believe, everything ended well. While I was stuck with an IV and a cat scan, my friends still were able to have dinner and meet me at my house at the conclusion of the evening.
A nuisance yes but another reminder that I am not in control. My niece and nephews remind me of this. For my 40th birthday, they put together one of my favorite songs (God Of My Everything) from one of my favorite artists (Bebo Norman). Little do they know, I've been listening to this every day since my sister posted it. She recorded this as they rehearsed. The best gift ever.
Thing are falling into place as I plan the trip to Florida the end of this month. It's so great knowing He's in control of everything.

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"walking" through memory lane.

It is hard to comprehend that I am working through many of the same details that I worked through four years ago. Although some things change, most remain the same. It is almost as if I picked up where I left off. Wings Of Mercy has graciously offered to work with me again. A pilot has agreed to fly me down at the end of this month to hopefully pass the final step in the screening to be a part of this clinical study. Amazing.
It almost feels as if I am going back home. Remembering the restaurants, looking forward to seeing Kelly and Dr. Z, smelling the Florida air, traveling through the halls where I walked, being barefoot in the courtyard...a welcomed familiarity.
I am surrounded by people who are excited and support me along the way. However, I don't think these friends would be to quick to do another rousing rendition of this song.Maybe we've matured in four years...
I am so glad I got it on tape. What remains the same is my commitment, along with so many others, to find a cure for FA.
Just click here.

Happy New Year!

http://www.curefa.org/_pdf/USFrecruitmentNotice01-02-13.pdf
If your like me, you probably are asking, "what does this mean?" Well, it's the best news I've heard all year!! In 2009 I began a journey that changed the course of my life forever. Four years of waiting and living with the progression of this dumb disease, I can breathe again. There is hope!!
I am on a wild ride beginning this month, of a final screening at USF in the hopes that I will qualify for this new clinical trial down in Tampa for the next twelve months.
Plans are in the works and a tremendous amount of excitement is in the air.
As my dad so eloquently stated in a reply to my email of my intentions to be a part in the advancement of a cure for FA, "Hold on, Holly."

Cheers to 2013 and hope that researchers are that much closer to a cure!

love fully.

Lately, I have this fear that if I start crying, I may not stop. And for those who know me, if you look up the definition of ugly cry in the dictionary you would find a photo of me. It ain't pretty. Not only is it not pretty, my ugly cry takes over any form of communicating that I may be attempting at that moment. I can't cry and talk at the same time.
With that being said, I have been trying really hard not to cry. It's not that there are not hard things that I am going through. Lord knows that there are many relationships that I avoid investing in recently because it just seems too hard. I recognize that this is not a good place to be. It is what it is.
That is, until my friends came over with dinner from one of my favorite local restaurants. As we sat eating rice and tacos and pointing out moments in our lives where we have experienced God's grace, I could feel the lump in my throat growing bigger and bigger. Crap. 'Snap out of it, Holly. Think of happy thoughts.' The pep talk was in vain. The damn broke and for the next twenty minutes I gave way to the ugly cry: snorts and all.
You maybe wondering why is this worthy of a blog post? It's purely selfish but I need to remind myself that God is still working even during the loud silence.
I am not sure how much my friends understood. There wasn't even a resolution to the hurt. But that's what made it so great. They allowed me to be me. We hugged, we cried, we blew our schnozes, we got mad and we laughed. It was real. It was honest. It was hard. It was so refreshing.
Those times when I hear people tell me that I am so strong, I will think back to this memory of sharing my ugly cry with friends eating El Rancho around my kitchen table.
These past few days has jarred the way in which we view life in light of the horrific tragedy that took place in Newtown, CT Friday morning. We will never be the same. Nor should we. I was watching an interview in which one of the people who was questioned about how we should respond to the evil simply responded, love fully.
Wow. Love fully.
Living with FA is becoming more and more isolating. But it CAN be so refreshing when I learn to love fully. I am so thankful that my friends lived out Romans 12:15 that says, " Be happy with those who are happy, and weep with those who weep." My ugly cry and all.

And they are total dog lovers...

RENEWED Hope

This week I met with four other women to discuss a devotional we are suppose to be doing as we are in the Advent season. Four weeks before Christmas. Anticipating Christ's birth with expectation and worship, all while we wait. Those three words hit me over the head with a brick: expecting, worshiping and waiting. This study is going to kill me. I am not very good at any of these "acts" in the world of Christianity. Frankly, I suck at all three.
I asked them if anything stuck out to them when reading the book. More specifically I challenged them to share one word that summarized what they took away from it. Without hesitation, one of the girls spoke up and said quite confidently, "Renewed Hope was what I took away." "SERIOUSLY??!!" is what I was thinking but instead I channeled a calm, reflective leader and asked her what she meant by that? This is the part that kills me. She expanded upon her thought by stating that God wanted her to be excited about what happened and stop being apathetic about her life. Okay, so I paraphrased it a bit. And I did what we are instructed NOT to do in a counseling session and made it all about me. Yes, there's a technical name for it but I can't think of it right now. I gave myself some grace and reminded myself this wasn't a counseling role. All in my head, of course.
Renewed Hope. It may be two words but man, they are two words I need to live by. I am weary of my apathy towards life. I am not sure what it looks like to discover a new outlook in life. Honestly, it's too overwhelming to tap into the very thing that may change my life. It's exhausting to think differently.
Extremely, tiresome that I need to head to bed. But tonight it's with those three words on my mind and a sense of RENEWED HOPE in my heart. Whatever that may look like.
Lately, it's been looking at these cute faces...

Yes, that's a bow from the tree that Barkley doesn't know that it's stuck to his lip. Pretty much sums up their personalities.