memories.

It is difficult to even imagine being warm. As I type this, I am wearing 4 layers and my feet are freezing. It is 17 degrees and it has been snowing all day. The entire day.
I stayed inside all day and did some reading and cuddled with the dogs.
My devotions this morning started out by saying, " Thank me for the conditions that are requiring you to be still." Lake effect snowfall and all.
The plans for my next clinic trip are still being worked out. It is a constant battle trusting that it will all work out and freaking out when the finances are racking up. Just about the time that I began to stress sweat, I was reassured of Gods faithfulness with an anonymous monetary gift.
Another reminder that He never fails.

 Click here for some photos from my final screening..

it's on!

I need your help. I have been on a high thinking that they are so close to a cure for FA. I am focused on travel plans and all of the details to make visits down to Florida. I am so humbled to think that I am playing a small part in the bigger picture of a cure. It's all so overwhelming. It can be all consuming as I move forward.
Yesterday, this excitement I was feeling came screeching to a hault as I received this email from the president at FARA. (Friedreich's Ataxia Research Alliance) It is an incredible organization that are fighting like mad for the FA community. I was reminded the fight is not over.We need to do our part to keep things moving.
Here's how you can help: join the FARA staff in an important letter writing campaign to your Senators and Congressmen! In the next 24 hours we need you to submit letters on the importance of maintaining funding for the FDA and the NIH.  Click here for the detailed instructions.
My next visit is the end of this month for my baseline visit. I just got more challenging news from Wings of Mercy that a pilot has not signed up. It looks like a commercial flight this time. Although there seems to be so many unknowns and dissapointments, I am not giving up.

Bring it on FA! You don't stand a chance...together, we will win.

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!