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.

In the waiting room.

I can't stop thinking about her. Last week I had an unexpected trip to urgent care. I didn't want to show up at work if I had something that was contagious. I am so bothered by people who bring their germs to work and kindly share them with the rest of us who are healthy. Seriously, no work is that important. So instead I coughed my way to the med center and found myself in a waiting room with other sickies, desperately hoping for the immediate cure.
I had a call into my family physician seeking some direction that just maybe he would call in a prescription. This would save time and another dent in my pocket to pay for medical bills. Of course I thought of calling him when I was next in line at urgent care. I was confident my doc would either squeeze me in or knowing my medical history, he would call in a "quick fix" into the pharmacy.
I moved out of the urgent care waiting room into the main lobby of the med center so I wouldn't bother the other sickies while I waited for the doctor call back.
That's when I met her.
I could see an older lady standing near the bench where Barkley and I waited. It is not uncommon for people to stare at Barkley. He is a handsome dude. Before I knew it, I was engaged in a conversation with this stranger. She proceeded to tell me her history with dogs.  She was a dog lover. Particularly black labs. I was immediately drawn to her. Her questions were energizing and certainly not annoying. Her curiosity with Barkley and my disability completely respectful and not at all patronizing. I really liked her.
As many of my friends point out, I ask a lot of questions. Call it the therapist in me but I learn a lot from people. And Jerry was no different.
She had just moved to a nearby retirement community. I asked her how she liked it. "It's a nice place but I am really, really lonely. One of my dogs died three months before I moved and because of the move, I had to adopt the other one out."
I have been wanting to get rid of my cat prior to this. I am a huge animal lover and therefore can't give her away to just anyone.
"You need my cat. She's fat but she'll keep you company." Unfortunately she couldn't. She has allergies to cats. Our conversation continued and I quickly became fond of Jerry. Although she is not dealing with FA, she is working through struggles that she has no control over. And the challenges she has, she obviously is doing something about them. It is true, I don't know Jerry's whole story. But the part of her story that I did hear in the waiting room of the med center has stuck with me.
She was real in her sadness yet not a Wendy whiner. She didn't suck me dry with her troubles but was honest and raw. I value that in people. I strive for that in my life.
The waiting in urgent care lasted an hour. My doc did call back and advised me to be seen there for my symptoms as he was unable to see me that day. Jerry's ride arrived, we said our good-byes and I headed back in the line at urgent care. Thirty minutes later I was diagnosed with an Upper Respiratory Infection. The virus needs to run it's course. I'll be fine. But it's the waiting room of  FA that makes me wonder if I'll ever be okay. I have no doubt that's it's running it's course.
I just hope I can meet more Jerry's while I'm waiting.

Phat Phoebe.

Anyone want a fat cat?.

facing the monster: not "just a"...

I'm in a weird place right now. I know a lot has to do with being down for the count for the past three weekends. And when I say down for the count, that is no exaggeration. After feeling like I was back after the whole kidney stone ordeal, I was no sooner hit with a nasty cold virus. It's just a cold, I know. But with FA nothing is defined by "just a...". Having FA is the foundation that effects every aspect of my life. The majority of my life I attempt to live it as if FA is not a part of me. But man, this past month has done nothing but remind me that living this life is hard. And I have spent a lot of time lately hating it and fearing the future. More specifically, the weekend. Dreading what is going to happen to me. Not a fun way to live.
I am continually having a one way conversation with God. I tell Him that I feel as if I am just taking up space. I remind Him for the zillionth time that I can't live this way forever. I confess that I am lonely, scared, angry, confused, disappointed. I know He gets it. That is not what I'm doubting.
It was rather timely in my Bible study of Nehemiah last week, when the speaker on the DVD began to challenge those who were bored. My living room is filled with eight incredible women who are all wives and working moms. One of the gals chuckled when that comment was made and said, "Uh, like any of us are bored!"  Like many times in my life, I wish I would have remained silent but rather I quickly responded, "I am."
I seriously wanted to fall flat on my face in the middle of my living room floor and pound my fists into the ground and kick my legs like a three year old having a temper tantrum. Fortunately, I didn't. Not only would that have been totally inappropriate but it would have been totally misunderstood. In no way am I ripping on my Bible study babes. I really think they would be right there on the floor with me. I feel that it was "just a" FA moment. Something that makes me feel so isolated in this life yet teaches me so much.
I know this life is temporary. My heart needs to catch up with my head.
It's my heart that overflowed when my sister emailed a paper that her oldest daughter wrote entitled: Facing the Monster With Her Dog By Her Side. (Great title if you ask me) The paper goes on by her writing,
"Aunt Holly is the strongest person I know. She has a disability called Friedreich's Ataxia.
My aunt always says, "Kennedy, you are beautiful. How was your day?" I always am amazed
because she genuinely cares about me before herself. She is kind, and an amazing Christian and
definitely challenges me in my faith. Aunt Holly is really the closest thing to perfect. She is the perfect example for me in my life.''

Kennedy as the beautiful freshman rep on the Homecoming  Court. And me on total drugs from kidney stones.

These words have nestled into my core when I read them. Although I feel as if I am just taking up space, I need to realize that it's not "just a"...it's so much bigger. And I am no where near perfect.