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.

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.