I don't want to be Gideon!

I haven't really felt much like sharing lately, but today I feel like writing. A lot has happened in the last couple of months.  Almost three months ago, I moved to a little more permanent place here in FL, which has been such a huge blessing. But along with that comes a deeper sense that the road ahead is a bit longer than anyone had originally expected or planned. Some days I feel like new lungs are just a heartbeat away. Other days I feel like we are no closer to new lungs than we were last September. Many days I wake up feeling unsettled for reasons that I can't pinpoint. In the beginning there were so many "signs" and "symbols" from God showing us that we were doing the right thing, moving in the right direction. Now that we are here, I have begun to second guess those things. Then, God goes and does something huge! In one month, three of my Jacksonville transplant world friends have received double lung transplants. Robin, my very closest transplant friend, received her new lungs after many years of waiting. Beverly got a second transplant after her first one started to deteriorate for her. Manny received his lungs in the nick of time. In their transplants, I have seen God work. I have seen three people, three families who waited patiently, knowing that God would send them what they needed. But for me, He used their stories to give me a look at what getting a transplant can be like. He knows that I have to see; I have to know. I can build up a situation in my mind to be so much scarier than it could ever be in real life. I can manufacture fear and anxiety from the smallest things. Recently, Alan Scott preached about Gideon and how God uses messed up people. He talked about how God gave Gideon signs because Gideon needed those to be able to move forward. He also talked about how trusting in God means that we have to have faith even without those signs. God totally took Gideon out of his comfort zone and put him into an impossible situation so that He could be totally glorified in Gideon's actions. (Alan, I hope I didn't miss the point of that message!) I want more than anything for God to be glorified in this, but I do worry about what that means for me.  And then I feel terrible! I have seen where we've come from; I have seen God work in others lives here. I have no reason to fear, but still I want to do this my way. Because certainly my way is less painful and lengthy. But every day I come a little more to the realization that hanging on to my way is silly. We only have what we have because God gives it to us, and if He wants it, He's going to take it anyway. So, why not surrender? Easy enough right? Yeah, not so much! I still struggle with why God would want us to go through any of this when He can make it all go away without a single word. I still want to make it about me. But, I am getting there. For now, I will keep wrestling with God to truly know Him and understand Him.

It's not a competition

My neighbor's mom came by yesterday to tell me that she had gotten a transplant.  Granted it was a liver transplant and not a lung transplant, but I couldn't help feeling a sad for me even when I wanted to feel only joy for her.  I tweeted the question "Does anyone else struggle to be happy for someone who gets what you really want?" and got a couple of answers, but the one that sticks out most came from a woman I have come to love on Twitter.  Her name is Liza and her answer was this "Prayer I said yest when a friend got something I was praying for 4 a year.'Thank u Lord 4 blessing them. Now bless me.' Im a brat!" and this "God's got enough good to go around. I trust His timing. It can be hard sometimes, tho!" The first reply made me feel better; that I am not alone in my imperfection. But the second one whacked me upside the head.  God does have enough good to go around.  God isn't making me wait for what I really want because He doesn't love me enough or because He used up all His good for the week already.  God's timing is perfect.  And He keeps sending people into my life that sending me running back to Him. So after Liza's response I was able to let go of my own disappointment and truly be joyous for the girl across the way.  It is much better better to have the joy in my heart rather than the cancer of disappointment. Also, please be praying for her recovery so that she can get home and back to her family!

We don't talk about it

I have Cystic Fibrosis. I don't talk about it much.  I don't like being called a CFer, a CF, a patient.  I don't associate with others like me because I don't want them to rub off on me.  The only people who really knew were my friends that I trusted not to treat me like I am fragile. Now, it's as plain as the oxygen tubing on my face.  My secret is out, and I have to deal with it now.  Now, I find myself in a place that makes it impossible to deny that I am, indeed, different. I am not weak; I am not less.  I am just different.  I need new lungs. Some people need new hearts or kidneys or livers.  I tried not to get involved in "transplant world" as I tried not to get involved in "CF world".  I don't want to be sick and I don't want to identify with being sick.  This is a state of suspended animation for me, a waiting room, a pass through to a new life.  But, I've been touched by transplant world and I have met some really incredible people who are really no different than I am.  People who are waiting to return to themselves.  I have also met people in transplant world that remind me why I don't like identifying with it.  I still don't talk about it, but I am getting more comfortable with it. I still pause when people ask about the oxygen or when I have to explain why I am in FL and Dustin is in GA. But I have found a little bit of safety in knowing that I am not alone and a lot of power in knowing that God gave me this outloud personality for a reason.  I still love to make people laugh and I still hate being a diagnosis rather than a person.  But by embracing it and allowing it to be part of my life rather, I can also begin to hope for what is to come. 

Forging Ahead

Hey friends! I took a break last week because my aunt Nan and cousins Kerry, Kelly, Savanah, Addy, and Baby A were here for a visit over the Martin Luther King, Jr holiday.  Then, Wyndi and Aiden/Babysaurus came for the week. It was so wonderful to have visits from home. 
I left off last time with the scheduling of the first appointment at Mayo.

Sept. 2010
Our appointments at Mayo Jax were scheduled for September 28.  We had one month to prepare for that day, but we had no idea what to expect.  We made our hotel arrangements. Dustin, my dad, my mom, and my brother took time off work to go with me.  My grandmother was planning on driving over from Keystone Heights to be with us that day as well.  All eyes were focused on Sept. 28.  But about two weeks before that, I started feeling bad again. I had no appetite, my heart was racing all the time, and I was sick to my stomach almost every day.  For about 8 days, I ate very little and threw up almost everything I did manage to eat.  Finally, Dustin took it upon himself to call Dr. McKean even though I begged him not to because I did not want to go back to the hospital. Again. Which of course was stupid because by the time we made it to the ER on Sept. 18, I could hardly walk on my own I was so weak. I got a bag of fluids speedy quick, and I started to feel better.  Hungry, even! I had high hopes that I could go home that afternoon. Alas, Dr. McKean had other ideas.  In light of our upcoming visit to Mayo, he wanted to be sure that I was good and healthy before I went. It turns out that was a really good call on his part because my kidneys were misbehaving, but we wouldn't find that out until the end of the next day.  It took 6 days, a lot of fluids, iv antibiotics, and a kidney specialist to get me on the road to recovery. They let me go on Thursday evening.  Probably because I hounded them about the face that I had tickets to the GA Tech game on Saturday and we were leaving for Jacksonville Sunday morning. 
I really wanted to have fun at the Tech game.  I had planned it all for my dad's birthday and it was going to be great.  I still didn't feel up to eating much and I was so tired.  But I was bound and determined that we were going and we WOULD have fun.  The game itself was hot and the Yellow Jackets lost, but the real torture for me was walking to and from the car.  I think we park 14 miles away.  I couldn't catch my breath and I had to stop every 100 ft. or so.  I tried to pass it off as still being run down, but I knew something wasn't right.  My dad and Dustin had to carry me each way.  For someone as tough and independent as I am, it was really hard to need help.  Turns out that was only the beginning.
This is where it gets a little fuzzy for me. I am pretty sure I was on system overload for the entire two days we were at the Clinic.  We met Margie and Dr. Keller for a consult, which we were not expecting.  I am not sure why, but we were expecting that they would do the pre transplant testing this trip.  I was, actually, very relieved that we were just meeting the doctor for them to decide if they would even take us. The major blow on this trip was that Dr. Keller insisted that I start using oxygen all the time, something I had fought tooth and nail against doing.  I shut down after that.  Thankfully my whole family was there to listen and take in everything else that was said because I sure didn't hear any of it. All I know is that they agreed that I seemed like a good candidate for the pre transplant work up.  I do remember giving them a window of time when we would be okay with them scheduling the tests. I also remember that my brother was the glue that held me together that day.  He was so calm and so pragmatic about everything.  He put the oxygen use in terms I was comfortable with.  I was going to be like an athlete, training to get my body in the best possible health for the transplant.
Even in the darkness of that day, God was so merciful to give us only what we could handle.  I was expecting to go for testing and to come back home and to be on the road to making this thing happen. I know now that I never could have mentally survived that process that day.  And I was so grateful that my aunt and uncle were letting us spend the rest of the week in their beach condo.  Dustin and I had a lot to talk about and think about. 

No wait, I'm not ready

August 2010
We now return to our regularly scheduled program...
Once we had a chance to process that fact that we would not be going to UAB for transplant, and we made the choice to come to Mayo Jax, we touched off a long journey of hurry up and wait. From the time we decided on Mayo Jax and filled out our application to Dr. McKean having gathered all my necessary medical records was about 2-3 weeks. Then, once he submitted my records, we had to wait another week or so for the Mayo Clinic to call us. I really thought I was prepared for that phone call.  In reality,  I am not sure I could have been less prepared.  When the clinic called the last week in August to tell me that they had accepted my case, I had to sit down to talk to the lady. My brain wasn't working right. All I could think was, please don't ask me to come next week.  Here was the phone call we had waited almost a month for and I was hoping for more time.  And I was so relieved when the receptionist told me it would be the end of September before they could fit me in. So there is was. The last week in September we would be going to meet with the doctors at the Mayo Clinic. Once she hung up the phone, I burst into tears. My reaction surprised me.  I thought that I had it all worked out in my head and that the only hard part would be the transplant itself.  I never imagined how many hard decisions and all out work lay ahead of us. But God knew and knows.  This whole process for us has come in increments.  I never had to give everything up or make many decisions at once.  But in that one phone call, it became crystal clear that this was not going to be easy and that our lives were going to look drastically different from here on out. I thought in the previous months that I learned to fully rely on God, but really, I hadn't learned nothing yet! I am not sure I'll ever feel ready for what's coming because as soon as I do feel ready, I remember the magnitude of what were are doing, which sends me running back to God...

Lost voice

I know I started talking about the journey we are on yesterday, and I full intend to resume that discussion tomorrow. There is something I want to get off my chest first. I have lost my voice.  Not entire.  Heaven knows I can still talk! I just can't sing anymore. Singing is me. I am music. I have always loved to sing in front of people.  I will never be a recording artist or be famous for my voice, and I am okay with that. But I have always been in choir, sung solos in church, been on the praise team, even did musical theatre in high school and college.  But somewhere in the midst of all the being sick this year, I lost my ability to sing.  And it makes me so very sad.  That is how I praise my Jesus.  I sing and harmonize during worship in church and it makes me happy.  It makes me feel like I have actually been in fellowship with Jesus.  Before we left, we were leading worship for the children at our previous about twice a month.  That had become church for us. We weren't going to church the weeks that we didn't lead worship in Upstreet, and the weeks that we did lead, we only had time for Upstreet.  So for about 5 months, we rarely went to a service. We had to stop singing when I kept getting sick, and somewhere in all that, I lost my ability to sing.  When we started attending Cumberland Community Church (c3smyrna for you hip folks), I suddenly realized how much we had been missing by not being in a worship service. The first few times were REALLY hard; it took all I had not to cry during the singing because I couldn't join in.  A few times, I even convinced Dustin that it was too much effort to get to church simply because I couldn't bear the sadness of not being able to sing! How silly I was! I can't remember the exact date or even the name of the lady who told her story (Noemy, help me out). But one of the 180 videos that showed during the service was by a lady who also loved to sing and was devastated when singing in the choir didn't fulfill her as she thought because she wanted to sing solos and be out front.  Oh how humbled I was by her confession.  She said what was in my heart.  I had allowed singing to become avenue of praise for ME not God. It was at that moment that I realized not only that Cumberland would be our new church home but also that God had had to drastic measures to get my attention. I still can't sing like I used to, and I hope that when I get new lungs, my voice will return.  But now, I sing anyway! I sing because the Bible says to make a joyful noise.  Not a beautiful noise. Which is good because right now my joyful noise sounds a little bit like a trained seal! I have also learned that singing to God isn't the only way to praise Him.  There is so much more to it than just the song.  What have you had to lose in order to see God for real?

God Incident

I am calling this post God Incident in honor of Noemy who stumbled across my blog, thus prompting me to pick up writing again.  I must admit that I didn't think anyone would read my blog, which made it easier to write. But once people started reading, I stopped writing.  In the last 7 months, our life has changed so much I hardly recognize it sometimes.  Some things were just too hard to talk about, and others I didn't have enough information to talk about.  For a while I felt like I was keeping a really huge secret that, ironically, was easier to share with complete strangers than with people I know and trust.  So I'll back up and start from the beginningish.

July of 2010
I was hospitalized for the 5th time since September of 2009. Never mind that I had already quit working and spent the majority of my time doing breathing treatments to stay healthy. It was in the hospital then that Dr. McKean suggested that we really consider a lung transplant.  We could have been blind sided by that conversation, but I think God slowly prepared us for that moment. By July, I had already given up so many of the things I loved, that signing up for a lung transplant was really the only option to recapture my life. I had no idea what it would mean beyond having major surgery to remove and replace significant organs that I have become quite attached to. Honestly, since then I have run the gambit of emotions. Being sick for so long, I really started to worry that each time was one less time that I could be patched up.  And I found myself paralyzed with fear that each time just might be the last time I could be patched up.  Making the choice to have a lung transplant was easy in that respect. Who would chose to stay sick and live in fear when you have a choice? Turns out having a lung transplant is a lot more involved that just getting new lungs. We had decided that we would be going to University of Alabama at Birmingham for the transplant because that is where Dr. McKean sends all of his patients. We made all our plans based on that.  It was going to work out perfectly. I'd live at home and wait, and then someone could live with me in Birmingham while I recovered. I called the health insurance company to talk to them about it. Turns out they had different ideas about where I could go for transplant! The insurance company would approve a transplant at Emory, Vanderbilt, or Mayo Clinic Jacksonville.  I had never considered any of these places and was quite blindsided by the prospect of making a decision to go anywhere but UAB. Funny enough, God already had that worked out.  Twice Mayo Jax was mentioned in conversation on the very day that we got our choices from the insurance company, and I have never heard of it in my life. Never! Then and there we knew that God had made our choice simple.  What had seemed so overwhelming that day was made so easy.  I find that God works that way a lot.  I am a doer. A person of action.  I kind of create chaos wherever I go! But God always seems to just take the decision out of my hands and arrange it very carefully in front of me.  He doesn't always do that, but when I need it most, when I am least capable of acting on my own, He guides me the most visibly. And that, is just the beginning of our journey...