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.