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.

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