one day...

I don't get it. This life is a mess. I don't fit in. I don't want to waste my energy to try to figure it out. I want to be okay with the grey, the ugly. Life can't fit into a box. There is no correct way from A to Z. My path is not straight. It never will  be nor do I want it to be neat. I don't want to fit into this life. It hurts. It's ugly. It's confusing. It's lonely. This life. The one I have been given to live with Friedreich's Ataxia.
Ataxia.  A disease that I am not very thankful for. A  disability that robs me of so much. A diagnosis that has changed the course of my life. It's so messy. And FA makes me feel all of those things and much more that only God and my dog knows.
But tonight I am so grateful Ataxia became a part of me. Because of this dreadful disease, I met the Veldink family. And if you are blessed to know them like me, you know what a gift you have been given. Two of their three girls have been diagnosed with AT, another form of ataxia. Today, Olivia, entered the arms of Jesus.
Every fiber of my being is screaming NOOOOOOOOOOOOOOOOOOOOOOOO! It's not fair. Livi can't be gone from this life. She was only in seventh grade. My heart aches for her older sisters, Abby and Kate. I weep for her parents Dave and Mary.
But I trust  that Livi is okay. She is more than okay. She is experiencing beauty for the first time.  Beauty so crisp and  vibrant and clean. It's no longer grey for Liv. It's bright. I believe it all makes sense to her.
So tonight I cry. Tears stream down my cheek because I am still in this life. But I am thankful for Ataxia. That sounds weird, I know. Almost fake. Trite. But nothing about AT or FA is false. Olivia, Kate and myself know that firsthand. Along with Veldinks and countless others, we are fighting like mad to eliminate this awful thing called Ataxia.
And one day, we will join Liv and tell her thank you for really living in this messy, ugly, unfair world. Your sweet smile and priceless giggle will keep us going. You will never be forgotten Olivia.

left to right: Olivia, me and Kate

And hopefully one day, Ataxia will be...I'll see you soon, Liv.
Meet the Veldink's: click here.

writing why I don't write.

I was out with a friend the other day and she told me I needed to write. She followed up her instruction with my next blog entry,"You need to write why you aren't writing."
 "Okay." I replied sheepishly. I even proceeded to get out my phone. I pretended I was putting it in my notes app to save as a reminder. I totally didn't. Honestly, I blew the idea off. In a second I decided that I don't write because I have nothing to say. Duh. However, as quickly as I formed this answer in my mind she blurted out, "Holly, you have something to say." Gulp. I didn't ask her if she was a mind reader. I just gave her a half smile and shrugged my shoulders.
Since our conversation, I had some of these excuses run through my head, 'It's not that I say anything that hasn't been said before., I am not some profound writer with a fan club who hangs on my every word., Writing is hard... BUT she is right. I do have something to say. Not because of me. Because of Him. God. This story is not mine to keep. He is the one working in me to give me the grace to live. It's hard. Very overwhelming. Completely lonely. Somewhat confusing. Absolutely exacerbating. I'm desperate. For Him. And that's right where he wants me.
I owe it to Him to put my raw feelings on paper. It isn't my story. Yes, I'm living it. My body is the one afflicted with FA. My butt is the one stuck in this wheelchair. It's my decision to rely on a service dog to help me get around. I am the one that falls if I don't concentrate or even if I concentrate. BUT it's my soul that longs to be at peace with Him. And I mean, really at peace. Content. And all of this is only temporary.
I don't write because the majority of time I don't feel that way. I don't. This momentary life feels like it will last forever. I listen to my negative voice a lot. I fake a smile quite a bit. My laughter sometimes is used as a way of redirecting the moment of truth.
At the core of who I am, I love God. That's weird, I know. I am motivated by the one who could heal me in a second. Yep, I am.
And so I don't write because I put down on paper words like that. I am fearful of being misunderstood. I am scared of being patronized. And these words make me accountable to be real in my faith.
I love what Bob Goff tweeted this morning. "We keep asking for more proof; God keeps saying our lives are more proof."   And I adore Goff's response when a follower asked him if he was speaking of existential or empirical proof? And here was Bob Goff's reply, "Oh my, I don't even know what that means...just enjoying God this morning. Hope you have a terrific weekend."
Absolutely hilarious. And so profound. I just need to enjoy God. I think for me, that means I need to write. Not just when it's easy or convenient. In the mess, too.
Life is messy. And beautiful.
Yes, even with FA.

There, Jo, I said it.
Therefore, I wrote it.

Posting this photo may teach Jo to think twice before she speaks into my life again. :) 

 

Love you, Jo!

it's in the exhale.

I have writer's block. Or I'm stuck. Maybe a tad apathetic. Feeling indifferent. It's easy to lean into my anger. I'm angry. That means I'm afraid. I'm fearful. I am.
The future scares me. The present overwhelms me. And the past makes me sad.
Whoa. That was a mouthful. A bit depressing but honest, raw, sincere. I want to be all those things. Even in the midst of the hurt. I tell myself it is okay to be sad. Disappointed. In my world, I can be all of those things and still belong.
Belong.
 I can't say that word without inhaling deeply.
 It's in the exhale that I learn. Slowly and often painfully but I grow. My heart molds into something different. The shape of it comes out sharp or rounded, brittle or soft, big or small, bruised or shiny. But my soul emerges with something. That something is not always welcomed. Occasionally it's not defined. And mostly not understood.
This something is suffering.
It's part of life. That doesn't mean I like it. I certainly don't get it. And I'm not going to pretend I understand it.
 Suffering stinks. It's so hard. Confusing. Lonely. Scary.
It's not hard to imagine that I can't just blend into the wall. Sneaking into a place is impossible for me. Forget being late and not making a grand entrance. I have gotten use to this. To ease my anxiety or discomfort of being stared at, I tell myself people are looking at the dog. He's a stud.

"Keep repeating that, Holly.  You're fine. You're not different. You belong."
Inhale. Deeply.
It's the exhale I'm working on.
I'm still struggling to breathe from a comment made by a parent to their child last week.
"Why does that lady have that dog, Momma!?"
Honestly, I added the "Momma" part to make this lady more enduring than she really was/is.
Keep in mind that this child and her "momma" are only inches to the right side of me. In fact, I could have spit in her face, we were that close. :)
"That dog helps people like her."
People. Like. Her.
It was as if those three words came over the sound system on 8th street. Echoing.
People. Like. Her.
 It felt as if the hundreds of people that lined the street, watching the street performers stopped and stared at me as those three words were shouted over the loud speaker.
A person like me.
I'm still in the process of figuring this statement out while I'm exhaling. The shape of my heart is still being molded. But I'm learning.Growing in the hurt.
I long to be someone who doesn't see a difference in another person.
I want to treat them as if they belong.
Inhale.
Because they do.
Exhale...

We all do.

still treading with me

 We all need a Dave and Dina. Maybe not this Dave and Dina- although I know many of you are their peeps- but everyone needs A Dave and Dina. If you google "how to be a friend", I am pretty sure their photo would pop up. If I were half the friend to people like they have been to me, my life would be rich indeed. And I'm not talking monetary rich but the rich that really means something.
Longevity. A word that describes our friendship. They came into my life when I was 17. I was literally dying from ulcerative colitis at the University of Michigan. They visited me in that hospital room as a stranger and left with a tight grip on my heart. They let me be me. They loved me as I was. Of course, I had this Christianity thing all figured out. Or so I thought. Then life took a hard turn. Not only was I faced with an unrelated illness, I was hit head on with this bizarre diagnosis of ataxia. I was drowning in uncharted waters. Dave and Dina were treading water with me.

And they are to this day.
They are missionaries in Vienna now. But that doesn't mean they love me any less. They were back in the states for some meetings and family time. In their craziness, they took the time to connect with me.
Our visit was exactly what I needed. It reminded me that I am not alone. There are days that I feel like I can't swim anymore. I get weary of choking on this vast ocean of water. The waves seem too big. Just when I think I can't do this much longer, I am loved on by Dave and Dina.
My hope is that you may have A Dave and Dina, too.

“When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. For I am the LORD your God, the Holy One of Israel, your Savior” (Isaiah 43:2–3a, ESV).

There are a lot of "at least"...

When I don't know what to do with my feelings, I turn my music REALLY loud. Or I write. And my emotions are all over the place so I am doing both tonight. It's time to get grounded. I need to take a step back. Look at the whole picture. Get a grip. Hang on. Even if it is only a tiny piece of thread. Because for some odd reason, this little string will bring me somewhere. I know the pieces will tie together. Maybe not now. Probably not the way I want them too fit but it WILL happen. Some way. Some where. Some how. It's okay to trust in that. In Him.
Honestly, that freaks me  out to say that. If I say it, then I have to believe it. I am not sure I can even explain it.
This is why it's crucial that I look around and see Him working behind the scenes, reminding me that He loves me.
Gulp. That just made my heart drop. I have that lump in my throat as I think about the little ways he "winks" at me, Through people, through songs, through warmth...He Is.
If I've heard it once, I've heard it a thousand times, "Holly, you are so strong." If you were outside with me on my deck this morning, you'd think twice saying that. I hung up with Wings of Mercy completely frustrated after spending a massive amount of time and energy yesterday wondering if they were able to fly me to Florida today. I did say today.  I hung up the phone and cried. Not a little whimper with a tiny tear streaming down my cheek kind of cry. It was a maddening scream accompanied by crocodile tears and snot. Lots of both that required a stiff paper napkin to wipe up my hot mess. I wasn't strong at all. I was so mad. I was extremely disappointed. I was really frustrated. And I was terribly scared. I was everything BUT strong.
I am suppose to be in Florida as I type and listen to this song on repeat. (click on "this song" to hear it) After a month of being confident of my flight to my appointment, I was finally told at 2:30 PM that the flight was a no go. It was at this point that I kicked in "do mode". Hotel and car cancellations. Flight reservations. Phone calls made. Texts sent. Emails forwarded.
He Is. Even in that moment. He Is in that moment when I am not strong.
And that's okay. That's why He Is.
HE ALWAYS IS.
Especially when I am not.
I have no clue why I am flying commercial tomorrow. I have no idea why I will miss my scheduled appointment. I am not sure why I have to stay down there longer than planned. I may never know.
At least I was able to work a little later. At least I made a friend at the airline that found a flight for me. At least I have a mom and dad who love me and will do anything for me. At least I have awesome doctors at USF that are flexible when the unforeseen happen. At least I now have the time to meet up with a new friend while I'm there. At least I am surrounded by great friends who let me vent and make me smile. At least there is no snow and I can walk to work. At least Barkley can't talk and allows me to have temper tantrums. At least they are moving forward to a cure for FA!
 At least...

screening two years ago to see if I qualified for this study

He Is.

We can do anything...together.

This FA thing has been in my life long enough now that I can recognize when I am allowing it to "trap" me. It can really trip me up and mess with my mind. It's scary how quickly my thoughts are consumed by the negative of FA. I am amazed how effortlessly I discover the darkness in life. It is as if I can't see anything good about this journey. I utter or even scream the words through my tears, "I CAN'T DO THIS ANYMORE!" It feels as if NOTHING is good in my life. I believe in the lie that things can not possibly get better.
As a counselor, my goal with the clients I see is to encourage them to play a new tape. It's a whole different story when you're the one doing the listening to the recording of lies.
I fell tonight. I went down the slippery slope of negativity and for a brief moment I felt pretty hopeless.
That is why I play this song over and over and over and over again. Imagine my surprise when I found this sent to me an email by my friend, Marci and her boyfriend Ryne. (click on the words "this song" to see their performance) The timing of it all was perfect. God's timing always is, right? Don't answer that, it's a tough one.
This past summer, the adoption group I oversee hosted a concert by the artist, Plumb. I had never heard of her before. She sang "One Drop" in the set that night and when I heard it, I bawled. The lyrics captured this journey with FA so well. I thought of Marci as her voice would be great for this song. I totally forgot that I sent her a link to the song in an email. Four months later she sent me this song of One Drop -wearing  FARA t-shirts and all! They will never know the gift they gave me and the reminder that no matter how I feel, it just takes one drop of hope.
I cried tonight and hugged Barkley so tight he probably had trouble breathing. But it was just for a moment. Just long enough yet short enough of time to put FA in it's place. I can do this. WE WILL do this. It just takes one drop.

Plumb and I (and Barkley) before her concert.

HOPE in caps lock

For whatever reason, I have been intimated to write in this blog. It is so easy to lose sight of the big picture. I tend to get discouraged in the present. I quickly forget the prayers and encouragement in my life. And then there is this winter. I won't go there. I am  doing well enough tapping into the downers in my life without dwelling on this HORRIFIC weather. Yes, it's worthy of caps lock.
So, it's time to celebrate the good. Focus on the happy. Fill my soul with HOPE. Now, that deserves to be in all capital letters. It needs to outweigh everything. HOPE.
The end of February marked the completion of the 12 month clinical study on the drug. Two of my friends accompanied me as Wings Of Mercy flew me down in a jet. So fun! The trip is always a whirlwind and would definitely be quite sober if it were my last appointment. However, I have been offered an extension of this study. Wahoooo! My visits will be every three months for the next year. I am beyond thrilled. Not only because of the potential of this drug for the treatment of FA but the relationships I have developed at USF won't be lost. HOPE.

Susan and Marcia=my angels

me, Kelly and Patti

on our way home on the WOM jet

It's about this time that I have a hankering to be down there. I can't explain it. It just keeps me grounded. It enables me to be a part of something bigger than myself. HOPE is in that room at USF. Dr. Z, Kelly, Patti and the countless others remind me to hold on. I keep pressing on and then I read press releases like this one. There is always HOPE.

the passing of the baton.

Reading my previous post and reflecting on that bittersweet day, I am aware of how I left out a lot of little (big) gifts that were given to me. The older I get, more junk seems to come my way. This hard, awful time of ending my relationship with Delsie makes me keenly aware of the good amongst the bad. Just like FA. Full of bad but tons of good. I just need to look or listen or both, look and listen.
A couple of hours before Delsie's last breath, my family and I were sitting together around her in my family room. I plopped myself right next to her on the floor. I needed to be as close to her as possible. This would be a good time to tell you that Delsie wasn't a fan of other dogs-not even Barkley. She bit him when I came home with him after team training. They ignored each other from then on.
Barkley knew something was up. Just as I wouldn't  leave Delsie's side, Barkley didn't want to leave mine.

Barkley got up to walk around the room, getting extra loving from my family. Upon circling around, he moved to Delsie's bed where she gathered enough energy to lift her head and check him out. Barkley stepped on her bed and was inches away from Delsie's raised head and proceeded to give her two big licks on her head. It was at that moment that the conversation in the room ceased. I will never forget the gift that was given to me as I watched Delsie lean into Barkley's licks.
It was as if Barkley told Delsie, "I got this now. I'll take good care of her." The way Delsie leaned into those licks made me believe she said, "I trust you."
The good and bad. Life with FA.
Bittersweet.

it was time to say good bye.

It is hard to believe this day has come. The time that I don't see her sweet face staring out the window as I drive off to work for the day. The memory of her snoring and the sound of her paws on the hard wood floor are fading. I can still see her tail wagging as I call out to my pretty girl. I miss the brown eyes always staring at my every move. The way she could make me dry heave with her farts that came from a very fragile digestive system was impressive. She helped me face FA head on. Her intensity was a strength and a weakness. Her goal was to make my life easier. And she did.
I had to say good bye to my first service dog, Delsie, on Friday December 6, 2013. Man, those are hard words to write.
This entry is selfish. I am not going to apologize for that. I long to have a permanent record of her life. To say she changed mine would be an understatement. But she did. And so much more.
On Thursday, December 5 I attended a woman's Christmas gathering at church with all of my sisters and my mom. I work at the church so I made arrangements with my mom that she would stop by to feed Delsie before the event. I stayed at work and would meet them there. I was a little nervous that Delsie may not eat or even show interest in her food. My mom confirmed my concern when I saw her. During the program, I found myself teary as I reflected on Delsie and how much she meant to me. Looking back, I am confident that God was preparing me.
When I arrived home I knew something was up as she wasn't there, greeting me at the door. I immediately started to cry. I made eye contact with my mom as she was hovered over a heavy panting Delsie at the end of the hard wood floor hallway. My mom couldn't lift her up. Dels was too exhausted to help. I called my friend, Anna and explained Delsie wasn't doing well and asked if she would come over to help her to the family room. I knew it was time.
Anna, my mom and I sat in my family room crying. I remember, I kept saying, I don't know if I can do this.
Anna left and my mom slept over. We each made a bed surrounding Delsie that night.
The next day all three of my sisters and my dad came over. We laughed and cried and laughed and cried some more. One of my sisters called Delsie's vet and we could bring her in right then. I told my family I wanted them there. Delsie needed to know how loved she was. I wanted that love to surround her as she took her last breath.
And it did. Her head was on my lap as she drifted off. My family circled us as we sat on the floor. Through my sobs I thanked her for giving me my life back and let her know I loved her. So, so much. I always will.My pretty girl.
FA has taken a lot from me. But FA gave me Delsie. And for that, I am forever grateful.
I miss you like crazy, Delsie.