half way...

Oh mylanta. It's September. The middle of September. Ouch.
I made my 6 month appointment to USF in August.
It's just what the doctor ordered. No pun intended.
Seriously, it was awesome.
A friend sent me a text while I was down there and asked me how it was going.
I replied, "I can breathe again. I belong here."
And we all want to feel like we belong.
I am sure that is why I have watched this video over and over again since it aired.
It reminds me that we can be when we do something bigger than ourselves.
I want my life to be all about that...something bigger than me.
And the beginning to the end just might be that.

the dreaded peg test

seriously??!!

 I have been weepy all day. Even as I begin typing this post, I can feel a good cry brewing. You know, the kind in which your voice gets all quivery and then your eyes fill with tears. The type of cry that you have to blink the water  out and before long you are sobbing. It's at this point that you are totally unable to get one single word out that is comprehend able. That was me today and it started at a 9:00 meeting when I was asked to pray after a deeply moving talk. Okay, maybe I was the only one who was severely impacted by the words that were shared.  I wanted so badly to encourage her as I thanked Him for the work He has done in her life. I needed her to understand that it was a privilege to hear her story and I had a desire to tell her pain was/is not in vain.  I was so grateful. That's what I thought I was going to pray about. That was what was in my mind. On my heart.
And all that I could get out was, "Thanks for the reminder, God, that you always..."and then I lost it. My voice cracked. my lips quivered and the tears streamed down my face. I couldn't regain. So I bellowed out to my friend Pam who said all these things without sounding like an emotionally unstable freak. Like me. I have no shame taking full responsibility for my outburst of emotion. I was a mess.
After the meeting ended and most of those in attendance left and my tears dried, I was able to talk one on one with the person who shared this morning. I was able to thank her and hopefully encourage her a bit. All with my fragile emotions at bay. I was quite proud of myself.  Ahem, pride before the fall.
A hour later I had this email exchange with one of my co-workers whose office is down the hall from mine. The subject line read, "SERIOUSLY?!"

 I began with these words:
"PD visits when I am PMSing????????????????????

Did you hear me bawling? Oh my word."

Her reply immediately,

"HAHAHAHAHAHAHAHAHAHAHAHAHAHHA……………. NO I MISSED IT! UGH!"

My response,

"Ridiculous.

I was out of control."

 and again, immediately she responds,

"Do you ever NOT cry when you see Dan?"

Touche.

me and PD at his surprise 50th...a few years ago. :)

"PD" gets me every time.  Every. Single. Time. And I can't blame it on being a woman with crazy hormones all of the time. 

PD was that person in my life who said the right things at the right times. He was the one when this crazy journey with FA began that said to me straight in my eyes, "Holly, you can be bitter or better." Some people who read that may shake their head and roll their eyes. It may seem too cliche or a little trite. But at that moment, twenty years ago, I needed to hear it. And it changed my life forever. I attempted to tell PD that today. He played a pivotal role in my life when he spoke those words. But, go figure, I was bawling. The full on ugly cry. I managed to literally scream the words out eventually. I have to say stuff rather loud to get the words out so you can understand them over the wailing.

And yes, the tears are falling on my keyboard as I type this. Today, I am weepy. However, I hope I am better because of or in spite of FA and the PD's in my life. And the tomorrows will be a little easier.

my new best friend

I cry when I finish a really good book. The ending doesn't even have to be sad. If I loved the book and I turn the last page. I weep. For real. Like sob out loud and bellow, "oooooooooooooooh, that was so good." or "noooooooooooo, I don't want it to be over." And then I immediately think of at least five friends that I need to buy a copy for so they can share in my new obsession with the author that is now my best friend. I spend time googling the author and watching every video posted on youtube and stare at every photo I can find of this fantastic writer that reveals a bit of who they are. The Internet is a crazy, fascinating tool! The fact that people can read my "diary" is kind of freaky. Yes, I know it's totally bizarre that I put it all out there for anyone to read.
Which brings me back to the point I was making earlier about discovering a story that captivates you. Glennon Doyle Melton in "Carry On, Warrior" did just that for me-she put it all out there. The fact that I refer to her with three names just proves the fact that I don't really know her. But I think I do. Or I need to. OK, I'll admit that I want to be her buddy. I want to be able to stop over at her house and hug her and say thank you, Glennon Doyle Melton. And just bawl and tell her we have absolutely nothing in common. I would then go on to tell her that I just lied and apologize because true friends don't lie. I would grab her hand (in my dreams, I am not in a wheelchair) and through my tears tell her that I am trying my best to love God, too. I would confess that I feel stuck and so lonely and even scared but after reading her words, I know these feelings are just fine. I thank her again while squeezing a little harder (I never let go of her hand) and I probably would grab her other hand with my free hand and smile and say, "I can do the hard things now. Because of this book. Your words."
I am sure at this point Glennon Doyle Melton would be totally freaked out and before I grabbed her other hand, she gestured to her oldest son, Chase, (good friends know their friends kids name) to call 9-1-1. I am not totally sure what gesture she used, but he would know. Chase is smart. Before the cops show up and handcuff me and tell me I have the right to remain silent, I hug Glennon Doyle Melton for the last time and walk backwards to my car (it would be my Montero since I am not in my wheelchair *sigh*) while blowing her kisses.
I am sure you can tell this book had a profound effect on me. I want to live differently because of Glennon Doyle Melton. I need to purge all my "uglies" and trust that in His time, He will make them beautiful. That's what He does. So instead of viewing FA as this three headed monster that is never welcomed, I am challenged to embrace FA and know that doing the hard thing, is learning and loving Him.
Glennon Doyle Melton says so.
Like page 262-263 in Carry On, Warrior: "My destiny is to remind you to look up from the castles you're building in the sand  long enough to notice the cathedrals that God's building all around you-without you, without your sweat, without your tears, without your consent. While you dream your dreams, he's busy building your destiny. And there is as much beauty in your destiny as there was in your dream. Let go and believe that whatever it is, it will be beautiful." 

...and Gungor tells us too in this song.  Click here and then put it on repeat.

"Lady" Ga Ga treating me as if I were Glennon Doyle Melton

It was a whirlwind.

This has been the book of choice for me and my friend, Mary Jo who read it at my visit last week to USF. Jo hates has her picture taken so this was the best I could do. This was in the room where I had blood drawn for 12 hours. On the very first draw, the nurse hit a nerve bundle. Before this, I had no idea a "nerve bundle" was even a thing. I do  now. And I hope I never ever feel one again. It was awful. After I screamed and Jo jumped up yelling, "get that out! something is wrong!", Kelly came running down the hallway to check out what was happening. Needless to say, my trust level for the rest of the day was shot. It was a pretty long, annoying day.
The next day was the eye exam. They dilated my eyes. I forgot my sunglasses. You put the two together and I could not see for 4 hours after the test. Sunglasses will not be forgotten again.
Wings of Mercy was not able to fly me this time. Jo and I were able to fly stand by on  commercial. The good news is that we were able to get on every flight! Barkley is a fantastic traveler so the times Jo and I weren't able to sit together, I didn't have to worry about him- at all!
We got to eat at my favorite places and stop at my favorite thrift store so that outweighed the fact that the camera broke on the first day!
As always, it was so encouraging to connect with Dr. Z and the team and remind myself that it will be all worth it when that cure is found!

me and Dr. Z

wheelchair to unicycle.

photo credit goes to my friend, Josh.

Saturday, May 18 was Friedreich Ataxia Awareness Day. I am totally bummed that this is even a day. At the same time, I am elated that it is a designated day. That means people are aware and fighting like crazy for this awful disease to be eliminated. 20 years ago I had no clue what FA even was and what was ahead of  me living with a degenerative disorder. We all live with 'could have, should have, would haves'...I have a ton of those.
But I long to live in the "what will be" or the "what now"? The above photo hopefully shows that. Although a bit disturbing, I think it's hilarious and so exciting for what lies ahead for the future of FA. In efforts to raise awareness for Friedreich's Ataxia Awareness Day, FARA hosted a nation wide campaign. The hope is that soon FA will no longer stand for Friedreich's Ataxia- so what will it represent? It is crazy to allow myself the possibility that one day FA won't be an issue and I will feel awesome!
Next week is my 4th visit to USF.  Last month I checked in over the phone. It's been a long month. I am anxious to return and check in with those in my life who are committed to finding a cure. Their dedication is contagious. It motivates me and reminds me that maybe one day I'll ride a unicycle to work and not my wheelchair.

day after day.

"I’ll be with you as you do this, day after day after day, right up to the end of the age.” This has been ringing in my ear since Tuesday of this week. I trust that is finding that place in my heart that can be occupied by loneliness. It is a reminder that I am not alone- ever. If I picture a friend telling me this over a cup of coffee, I am sure my eyes would fill with tears at the moment. But as soon as they leave, I am quite certain we would eventually forget about each other. Not intentionally, but life happens.
The cool thing about this verse found in Matthew 28:20 is that it is the words of Jesus spoken to me and you, the friend I forgot about. He is always with me. I am never alone- ever.
For me, at this moment, that is so comforting. I won't lie and tell you at other times in my life that has been terrifying. 
Having FA can be lonely. Most of the time, I feel forgotten. It is such a good reminder that He is with me day after day, right up to the end...a true friend indeed.
It is about this time when I begin to tap into the anxiety regarding the details of my next trip. I know it will all come together. It always does.

 

It's time to go back. I've missed this place.

...just barged right in

I'm stuck inside my head today. I'm sure it's because I literally feel stuck inside the house. This Michigan Spring is for the birds. Well, not really, they must be regretting leaving the warmth of the south. I know I would. I think everyone up here is more than ready for the freedom to go outside without your nose hairs freezing together or your eyes tearing from the frigid wind.

outside the hotel in Florida- I can feel the warmth of the sun through this photo! :)

Today, I didn't need the help of the bitter air to help the gushing of tears. My bitter spirit is doing a great job in that department. Days like these in which A is certainly capitalized in FA, I long to push the fast forward button and move on.  But I lived with this long enough now that I know I just need to dive into my grief and allow my frustration, disappointment and even jealously to reside for a bit. These feelings will move on. I trust that. So, I cried this morning. No, I literally screamed and cried. And made room for the tears that fell down my cheeks. I am thankful for Barkley and his big brown eyes and wet square nose that laid by me as I threw a little fit. As I stroked his head and wept, I knew I had to allow my feelings in. They didn't ring the door bell, send me an email, tweeted or text me to let me know of their arrival, they just barged right in and took over for awhile. I am okay with that. I really am. It doesn't mean FA went away or that life will be easier. I just had to respect what was happening at the time.
Today, I am stuck in my head. FA is making my life appear a little grey or even foggy but I am not residing in this place. I know this, too, shall pass and the birds will sing with delight. I will be able to go outside without bundling up and I will be able to breathe without my nose hairs freezing. And the best part will be when I thinking NOTHING of FA. Oh, what a day that will be...until  then I'll repeat Deuteromy 31:6 "Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you or forsake you." and get THAT promise stuck in my head.

a pick me up.

This therapist needs some therapy. The lack of sun and the continual rain and cold temperatures is certainly taking a toll on my attitude. In times like these, I am thankful that I live alone. The other day my sister said she was hiding in her room because she and her husband were not getting along. It was at that moment when I realized that if I am in a bad mood the only "people" I have to deal with are  my dogs and they love me no matter what. Even when I am jerk. And don't worry, I know my dogs aren't people- it was just an analogy.
So tonight I will post some photos that make me smile from my last visit to USF. These are the memories that keep me going. And give me hope for a cure!

Jo loved this photo cuz I couldn't talk while they took my temperature. I guess she thinks I talk a lot. Just another bonus that I only live with dogs!

When we arrived in Florida. I received an email that Wings of Mercy wanted to take me home. They didn't need to offer twice. Flying commercial versus private is a no brainer. And it sure didn't hurt that it was a jet!

Jo, Barkley and I inside the jet

I am so grateful for Wings Of Mercy!

Clinic #3 and Dr. Z

I think I channeled a bear and went into hibernation this past week. I opted not to spend Spring Break with my family this year as every second of vacation and sick days are spent on this clinical study. As it is, I have no more paid time off. Well, throw that responsible thinking out the window. I have been sleeping this "bug" out of my body the whole entire week and weekend. Who knew one can sleep so much?? I put any bear to shame the past 100 plus hours! While this little burst of energy lasts, I thought I'd better update the blog for the few faithful followers (say that five times fast) out there.
This trip wasn't without a few hiccups but overall it went great. Wings of Mercy had to cancel their flight a week  before. Needless to say this caused a bit of anxiety. I was blessed with a friend who allowed me to purchase tickets at a fantastic deal with the catch that every flight Jo and I were on stand by. It was an early start to the day as we arrived at the airport at 5 AM in hopes to get to Tampa. And we did!

our second flight of the trip down there- NY to FL!

Upon arrival, Jo and I found an AWESOME second hand store and treated ourselves to one of my favorite food places.

It was emotional visit for me. Everything about it. The peace I feel. The joy of the sun on me. The warmth of familiarity. The fondness of "new" friendships. The commitment to a cure. The confidence in God's plan. The whole thing.

My parents stopped by on their way down to their vacation spot for the week. It was fun to meet at USF and act like it was "no big thing" we were able to do that. COME ON!! HOW COOL IS THAT??!!! Obviously, I thought it was pretty cool.

And my reason for the visit was clinic #3 and Dr. Z and team. As usual, it was the highlight. I sound like a broken record but it is so refreshing to feel as if you play a part in the cure for FA. Tears were shared and hearts were nudged as we continue to do our part in the bigger picture of what God has painted.

Now that this bear is out of her cave, it's time to work on my next  clinic appointment in May. The month of April will be monitored over the phone. Maybe the next trip I'll return home to Spring!

wax on wax off

 The last visit was the 3 day base line at clinic. I started the time with a questionnaire that was very confusing- it seemed like it was written to trip you up. I kinda felt suckered and wanted to yell, "quit messing with me!" Chris aka Ginger thinks I'm  a nut case already so this outburst would only confirm his impression of me. I am sure he wondered why they weren't studying my psychological condition instead of focusing on FA.  One of my mantras is that it's better to laugh than cry! I certainly do my fair share of both.

After I completed the "written" part of the test, I went to another part of the campus that focused on my hearing. I had to undergo four different tests and few of them are shown here:

The screen on the right is the inside of my right ear. Wax free. The left ear? Disgusting!!

 The team reassured me that this was common. Hello, Q-tips!

Truth be known, I pretended to be in a recording studio for this portion of the test.

Four people were focused on tests throughout the day. I was so impressed with them and their commitment to the job. One more reason to love USF!

It's mid March and feels more like mid February. There is snow still on the ground. I'm still dependant on my electric blanket. And I find myself dressing for temperature in the negatives! My next visit can't come soon enough.

Unstoppable.

On my last visit we were driving through the campus of the University of South Florida and I spotted a banner that decorated a lamp post. It sent chills down my spine and I fumbled for my camera and took this photo.
For those of you squinting to make out the word, it says "UNSTOPPABLE". How appropriate. Very timely.
A friend of mine, who is a speaker, challenges his audiences before the new year approaches to pick out a word for the year. A word that you may feel God leads you to- a challenge or even a praise. It's a great idea. I have never done it. Sorry, Doug. It's nothing personal. I am not one to jump on a band wagon just because a lot of people around me are doing it.
But I think this has become my word. It picked me. There were banners on almost every lamp post and it is a huge campus. I never saw this particular one repeated. "UNSTOPPABLE". It's my word for this study. It's my belief in a God that is using people like Dr. Z and Dr. Kelly and SO many others working toward a common goal in finding a cure for FA. How encouraging.
This past week, I had resolved myself to the idea that I needed to fly commercial as the option of Wings of Mercy would not be available. Of course the clinic time is during Spring Break for most people and that would mean a very pricey flight. Through a friend and an answer to prayer, I was able to purchase a flight at a reduced rate. At the exact same time, Wings of Mercy emailed me to let me know a pilot signed up. UNSTOPPABLE.

It is a blast to see how God has this all figured out. I am so humbled to be a part of it all. There is no stopping Him and what he has planned.
And yes, He even uses bull headed people like me.

focusing.

My Bible lies open on my lap this morning and I keep reading 1 Chronicles 16:11 which says, "Look to the Lord and his strength; see his face always." ALWAYS. Yikes. I am not so sure this would be true of me. Do I ALWAYS seek his face? Not so much. I totally get in the way. A lot.
There have been times, although brief, that I sincerely have sought him and felt that I was loving people as he would/does. And it makes life much more bearable. My life has seasons. The older I get and the more I live, I am acutely aware that this is a season of expectations. Not only in my relationships with people but expecting a cure for this annoying disease.  In the past, I was quick to utter the words, "hoping for a cure" knowing full well my heart wasn't caught up with my head. So when I read, "Look to the Lord and his strength; see his face always." I am reminded that's not about me. This journey to find a cure is not mine to claim; it's his. People will never live up to the expectations I have of them. Only if I seek him, my focus won't be on other people but the hope I have in Him. With or without a cure. That is scary to write and even harder to truly live out but I want to believe it in the core of who I am.
The commitment to this clinical study is a priority for me but I don't want this time to be all about me but the opportunities he puts before me.
Its with that funnel that these photos represent. There is a story behind each of them. It's been a riot so far and I desire to be constantly reminded that it's not about me.
I am scheduled for clinic the end of this month. I am out of vacation days and a pilot hasn't signed up with Wings of Mercy but I am confident he provides when things on paper don't add up. That is, if I keep my eyes fixed on him.
Speaking of eyes, FA has apparently caused my eyes to jump a bit but I have over 20/20 vision in both eyes. The one good gene I do have!

this how I felt after they dilated my eyes for the tests, I couldn't see a blasted thing for a few hours.

ayha matey! testing for color blindness

drawing blood AGAIN and again and again...

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.

the curtain.

waiting in the airport leaving Florida

It is always difficult to leave Florida. I know the weather plays a huge part of the reason for grieving going back to Michigan but I LOVE the whole experience. The people, the USF campus, the hope...the entire package.
This visit was a 3 day baseline and I began the medication. Although we had to fly commercial this time instead of Wings of Mercy, it went great. On the way down to Tampa we were bumped to first class. It was the start of a fantastic trip. I think during the 2 hour flight I believe I said to the friend traveling with me, "we're in front of the curtain!",  at least 10 times.
The front of the curtain was just one of the many blessings through out this visit. It's been 2 days of taking the medication. Even though I have to chug it down with milk, I am thankful for each swallow as my heart fills with hope. I feel that my journey has a purpose as I put one foot in front of another as we travel to a cure...even if it's behind the curtain!

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!