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.

He moves stones...er, mountains.

It was bound to happen. Let's face it, my life is abnormal. I received a text the other day from a dear friend that said, "nothing is easy is it?" And the challenge these past two weeks were kidney stones.  For those of you poor souls who have endured such a hurdle, it is quite probable you let out a grimace "oooh". Believe you me, every squirm or scream is valid. Those suckers hurt. A lot.
Let's throw FA in the mix. It wasn't a pretty picture. I was a mess. Bless my sisters heart that had the pleasure of receiving the phone call as my mom was with my Grandma in Detroit.
"Christy, I hate to ask this of you." But this sentence was not spoken clearly. I more or else screamed it with my slurred speech and tears while clutching the couch in severe pain.
"Holly, what's wrong? I can't understand you. I'll be right over!" Although that was on the  verge of a scream, that was spoken quickly and very clear. Bless her heart. In my mind, she couldn't get here fast enough.
I will spare you the details. Frankly, I don't know a lot of them as this episode landed me in a 3 day stay at the hospital. I was so drugged up, even now it is difficult to piece the details together.What I do know is that kidney stones are evil. Pure evil.
And once again, I was reminded of my awesome family. I am blessed by them. Every time I think of how they love me through the crap, I cry. So, I leave it at that. I love my family.
And now I can hate another thing...Kidney Stones AND FA.
Since nothing is normal for me, I had to have surgery to get them out. Yup. Plural. And yes, they were stuck.
Barkley's first hospital stay. I think he did alright. I am so glad my family knows the whole service dog drill and hospital stays. At least, I think I am?
My poor mom camped out with me as my recovery was slow.
I am thankful no one snapped a photo of me while I was in the hospital. Well, they may have and it will show up with the photo of my hair that looks like the human brain. Don't ask.
Mom took this one while I was recovering at home. And getting the best kind of lovin' from Barkley. 

I have no lessens that have been learned from this hiccup. It was annoying. No doubt about that. But I trust He still moves mountains. And hopefully that mountain is a cure for FA . If the stones don't move, let's hope the mountain does.

more lessons.

"Be still and know that I am God." I cried these words last night in a prayer with a friend on the phone. Seriously. I could only repeat it over and over and tears dropped down my cheeks. Although my friend and I have complete different circumstances, there is a commonality. There are things we can't control in life. As we talked, it was so clear how out of control we are in life when we think we are in control.
Rewind a few hours earlier. Another humbling fall. I sneezed and took a face plant onto the concrete driveway as my body reacted violently to my bodily function. My sister who is a OT would cringe if she read this (thank goodness she doesn't read my blog) and respond, "strap yourself in that chair!" Let that go. I'm learning a lesson here. I don't want or need your pity or advice. I realize a seat belt would immediately fix the problem. Humor me this time, (and probably many more) I am learning that I have a disease that I can not control. "Be still and know that I am God".
I know that I can do things that will help me deal with this disability. And today with the painful scrapes on my face  AGAIN, I take a deep breath and exhale with tears and laughter. It doesn't make sense. My friends suffering, my suffering, your suffering...I guess it doesn't have to. All I need to do is live Psalm 41:10: "Be still and know that I am God. Be still and know that I am God. Be still and know that I am God."...

My posts have been lacking because all my attention has been directed to these two. How sweet it is.

forgotten?

I have felt forgotten these past couple of months. This disability was seeping into my core and I was allowing it to rob me of my joy. Every little hurdle was a mountain and Barkley was accustomed to the outbursts of screams and tears that happened daily. My frustration level was extremely high and I no longer felt the courage to face FA head on. My patience was running thin and I was weary of waiting for USF to call inviting me to be a part of a new study. My friends and family had lives worth living and my life failed in comparison. I was lonely, bored, stuck and forgotten. All words that are disheartening to describe the life you are attempting to live.
One day I was checking out at Walgreens with items that I needed. Who doesn't need to try a new hair cream for your hair when it's a natural frizz in this humidity? I could feel the older man behind me staring at Barkley. As I was reaching for my wallet in my butt bag, (my mom made me a bag out of the behind of a pair of Tommy Hilfiger jeans that hangs behind my wheelchair) the man and I made eye contact. I mustered up a fake smile as he quietly gave the cashier his credit card and gestured for me to put mine away. Before I knew it, I had my bag of items bagged and on my lap. With tears in my eyes, I turned to this stranger and said, "sir, you do not have to do that." His only reply was asking me my dogs name. At training they suggest we make up a name to give them in efforts to not distract our service dog. I felt this interaction required honesty and I was still trying to comprehend what had just happened, I feebly replied, "His name is Barkley." With a grin on his face he said, "My son has a dog named, Barkley."
And with that, the exchange was over. We resumed our lives and I was stunned.
The whole way home I think I was faintly crying-more like a whimper. I questioned whether or not I even thanked this kind soul.
And I was reminded of how I am not forgotten.
If that wasn't enough, a week later, I opened my mail to find a note from my sister, Christy. Her daughter, Kennedy had written an essay describing a hero in her life. The essay was entitled, "She Sits in a Wheelchair". It only took two sentences and I was weeping into my hands. Kennedy began the essay with these words, "My hero is the person I turn to everyday, my role model. My hero is important to me and leads me in the right direction. My hero is Aunt Holly, and my hero happens to be in a wheelchair."
Gulp.
God used a complete stranger and my awesome niece to remind me that people are watching how I respond when the going gets tough.
He hasn't forgotten that I'm still fighting.

me and my niece, Kennedy

The road is long but I am trusting it will be worth it in the end.
Thank you old man and beautiful Kennedy.
You got me out of the pit.

20 seconds.

"Life only requires 20 seconds of insane courage." This quote/paraphrase came from a movie, We Bought a Zoo, I watched this past weekend. These simple words have become the lens I look through when I view life these past few days.
If I had insane courage for 20 seconds, how would my life look different?
Honestly, that scares me. And that tells me I am a wuss. I am comfortable. I have a roof over my head. Food in the cupboard. Clothes in the closet. Shamefully, a bit too many, compliments of Goodwill and friends who pass on their hand me downs. Money to pay the bills. Paycheck to paycheck. I am employed that provides insurance. I own an accessible van that enables me to get from point A to point B in my power chair. A wonderful service dog by my side 24/7 to offer assistance with the challenges of this disability. I am able to enjoy my retired service dog after she worked faithfully for 10 years. My family is close by and very supportive. All of them. I live in an extremely happy town. People are friendly.
Seriously, what is my problem?
I read this list and wonder why I feel like I am taking up space in this world. I am disheartened by my inability to make a difference in this life. My drive for comfort and not courage. It's sickening. Sad. Lonely. And certainly depressing.
"Life only requires 20 seconds of insane courage."
In 20 seconds my life could be very different.

This photo screams courage and the fight for a cure for FA.

 I can't give up.

the end.

My friend, Heather, shared a daily devotion that I could receive through email. Some days I am not in the mood to open the email or the subject of the devotion is such that I don't think it applies to me. How egotistical is that? Today's email had the subject of Desperate Enough. Yep, that's me. I am desperate. Desperate for some kind of change. Desperate for healing. Desperate for a husband. Desperate for motivation. Desperate for warmer weather. Desperate for a family.Desperate for my new service dog to be eager to please me. Desperate for affection. Desperate for affirmation.Desperate for the Bachelorette to start. Okay, I'm getting carried away. But, I am Desperate. For Something. Need less to say, this subject interested me. It seems I am desperate enough.
Although the author of this devotion used an example from parenting and her challenges with that, I forged on desperate for some encouragement.
I am so glad I did. Here's what I read when I experienced that "ah-ha" moment:
"Desperation causes people to do different things. Some people make wrong choices, believing their backs are against a wall. Some people go into hiding, hoping a problem will go away.
Yet others are desperate enough to do something risky and full of humility to get help. Sometimes God uses other people to help us, and sometimes He is the only One who has the answers.
In the difficult times we face, many of us have problems that push us to the point of desperation. It is my prayer that instead of desperation defeating you, it motivates you to seek help. Whether God Himself provides your deliverance, or He uses someone else, trust He already has a plan to help."
The bold emphasis is mine.
I should have typed I am desperate for God.
the end.
And I will trust He already has a plan to help.

Me and Barkley at team training 10-12

fact or fiction.

It is a known fact that dogs take on the personality/characteristics of their owners. If you have known me long enough, it is quite comical thinking of my pet dog "tri-pod". And yes, he came by his name honestly. Leave it to me to have a disabled dog. I still love you, Phoenix.

However, focusing on my two service dogs and how entirely different they are, this fact confuses me. Delsie is intense. Barkley is laid back. Both to a fault. Delsie HATES the vacuum.. She will not be in the same room when I haul it out. Barkley could care less about the loud thing. He won't move when it comes near him. That explains the dog outline on my carpet. Delsie is not a cuddlier. She will tolerate my hugs and kisses. Barkley is a complete lover. He lays on my face. For real. He can't get close enough. Delsie is rather independent. She loves people. Barkley is a dog dog. His goofiness comes out when he is playing with other dogs. It has been a riot discovering these differences. They are complete opposites. What does this say about me?
The other day I was going for a walk with Barkley. He literally froze in his tracks when we passed this statue of Jesus.

I am intrigued by Him, too, Barkley.

For some reason, I have been a bit anxious when I think of living like this 40 more years. I can't do it. Or better said, I don't want to do it. I am different on how I handle this challenge each day that passes. One day, my optimism surprises even me and I am not even phased by this disability. Other days, I am consumed and utterly overwhelmed by the gloom this diagnosis brings to my life. And there are days although few and far between, that I don't give FA a second of my thoughts or worries and I feel relief or free. So yea, I also detect differences in the way I approach life. I am sure that I can emulate a bit of Delsie and Barkley personality. Did I just compare myself to dogs? Oh boy. The morning that I verbalized my angst against FA through tears, a press release came out for a clinical study in Italy. http://curefa.org/_pdf/PressRelease03-15-12.pdf

You can return any day Jesus.
In the mean time, bless those who are fighting for a treatment or cure for FA.

until then...

Seriously, where does the time go? I have no legitimate reason for not posting. I would only be making excuses. But this week I have been challenged to take some intense inventory as I was scheduled to speak Wednesday for the youth group and then again this morning. Nothing like being held accountable for what I believe.
It is clear that I am a huge procrastinator or struggling with the winter blahs. Honestly, I think it's both. Procrastination and the blahs- not a good equation to offer teens hope in this crazy world. But I did it. I hope. No pun intended.
On Wednesday, the topic was belonging. Having this disability presents some challenges when I want to feel like I belong. I don't want my life to entail all things disabled. Yet I don't truly fit in an able world. A tricky fate, for sure. And one that I thought I would never be up against. The truth is that I am disabled. So this morning I focused on James 1:2- "consider it pure joy, my brothers, when you face trials of many kinds..."
FA is a trial while I navigate this life. I don't want it to define me, however. I long to count it joy. It may seem unrealistic when I hit my face AGAIN on a tile floor. At that moment, besides the urge to throw up from the concussion, I have a choice to figure out the joy in that situation. Faith not feelings. Faith not feelings. Faith not feelings...
The purple has faded and the bruising is gone.

The heart will always ache. Ache for a cure. Until then, I consider it pure joy to be surrounded by two amazing dogs, encouraging friends and an incredible family.
Until then...Delsie seems to be enjoying her retirement and Barkley feels as if he has always been a part of me.

2012, let's begin.

It's the first day of 2012. There is something about the new year that sounds enticing. The possibilities seem endless. Life appears approachable. I feel a little more courageous to face what is ahead. I welcome change instead of run from it. I long to be closer to the One who created me...it all equals HOPE.

...and then FA enters the picture. Shamefully, 2012 quickly loses its appeal. I am consumed by its uncertainty. Fear muffles any form of courage I muster and change means progression of this stupid disability. I shy away from Him. The One who is everything. The Alpha and Omega, the beginning and the end.

Last night I was surrounded by friends who allow me to be me and more importantly, love Him. So refreshing and so fulfilling. Without them knowing, they made FA smaller and helped me look to the new year with excitement.

FA is in my viewfinder but it's not the only subject in my snapshot of this life here on earth. 2012 is here and so is FA. But it's not forever.

"Do not despise these small beginnings, for the Lord rejoices to see the work begin"...Zechariah 4:10

2012, let's begin.