Sunshine Amidst the Clouds

I want to take this opportunity to just brag on God for a little while.  In the past week alone, He has blown me away with His perfect timing, His provision and His grace of which I am so undeserving.  Here's a laundry list of just a few of the highlights from the past few days.

I've said it once and I will continue to say it as long as I am alive......we have the absolute BEST friends anyone could ever ask for!  We have been blessed with such an amazing network of support here in Jackson and it still baffles me to think that we've only lived here for one year.  It's as if we've known these people our entire lives.  They have become so much more than friends---they're family to us.  They have stepped up, reached out and opened their hearts to our family during our time of need with no strings attached.............

• Even though it's early in the game, we've already began receiving meals from various people in our church family.  Though I have told them it's not necessary at this point in time, they've insisted and we have tried to be gracious receivers.  =)  I will admit, it's been very helpful because my energy is so low these days that I don't care if I eat at all, but my family feels otherwise and I can't really blame them.  Thank you to the ladies who have done this for us!  It is definitely not necessary or expected, but it's much appreciated!  
• In the same way, many friends have offered to help with Kyndall by having her over for play dates, spend the nights or taking her out for special activities that she enjoys, but that I don't have the energy to do myself.  I've felt so guilty the past few weeks because I just cannot be the Mommy that I want to be to her right now.  I don't feel like playing with her or taking her on fun outings and she's had to adjust to this change the best way she can.  Most days we stay close to home, unless it's a school day for her or we have some really pressing errands to do.  Matthew tries to take up the slack on the weekends by taking her out to do fun things, but I know she is probably about to go stir crazy.  A HUGE thank you to those who have shown my sweet girl extra attention during my absence and have loved on her as if she were your own!  

Fun with a friend during a sleepover!

• Tomorrow, three sweet new friends are coming over to sit with me and establish a game plan of how they can help our family out long term, on a weekly basis.  Together, they have felt led to bless me with their time and their energy in whatever capacity needed---from cooking to cleaning to grocery shopping to taking Kyndall off my hands so I can rest.  Again, although I don't feel any of this is necessary at this point, I am working on being a gracious receiver and accepting the help as it's needed.  I can't even begin to express my gratitude for their selflessness and their willingness to devote their precious time to our family, especially when they lead such busy lives and have growing families of their own.  
• My precious friend Joy Greene is in the process of arranging a very special time of prayer for me, in which my sisters in Christ will come together in my home to offer up sweet prayers on my behalf.  There is such power in prayer and I am looking forward to seeing the Lord move in a mighty way through this experience.  I am especially looking forward to this because my Mom and my Mother-in-Law will be here, which means they will receive the blessing of this time as well.  

The Lord really blew me away Sunday night when my friend Joy told me of a professor that she works with at Union who had a liver transplant almost two years ago.  She didn't know many details but sent me the link to an article she found, which detailed his story.  I was absolutely floored when I read it!  

READ IT HERE

Could it really be that someone in my own small town had the very same rare liver disease as I do and just walked this exact same road himself?!  Not only that, his transplant took place at Vanderbilt as well?!  After reading his story, I knew I had to talk to this guy!!  With one simple e-mail, Joy put the two of us in contact with one another and by Tuesday morning, I was sitting at a table across from this amazing man, listening to his story and hanging on every word.  We sat together at Panera for 3.5 hours as he shared with me the details of his journey---the good, the bad and the ugly.  He let me ask questions and told me things the doctors probably won't.  We sympathized with one another and shared horror stories of fatigue, itching, jaundice and even hashed out our feelings on our doctors at Vanderbilt, which we happen to share.  It was so encouraging just to know that someone else has been in my shoes and is now on the other side, living a happy, HEALTHY, normal life!  Jay also gave me the link to his wife Mary Beth's blog, in which she posted daily and weekly updates throughout their time in the hospital and in the weeks following his discharge.  I sat up until nearly 3:00 a.m. reading every single entry, laughing and crying simultaneously.  In some ways it made me feel much better about the whole process and in other ways it definitely put a healthy fear in me about what is to come.  This surely will not be all rainbows and unicorns, I can tell you that much!!  In fact, it's going to be a long hard road to recovery but I'm glad that I have a better understanding of exactly what to expect.  I'm a planner and I don't like surprises.  I'm a give it to me straight kind of girl and I don't like things sugar coated.  I definitely got that in talking with Jay, and I'm thankful for it.  Jay had a MELD score of 22 when he was listed (I'm currently a 21, as of December 19th) and he only waited four weeks before receiving his organ!!  I hope and pray the Lord shows favor on me the way he did on Jay, in giving me a short waiting period.

Jay gave me permission to share a few of his pictures which I found fascinating.....

This is the first time Jay's wife was able to see him after surgery.  As he began to wake up, he was still intubated and his arms were still strapped down so he was unable to speak.  But he managed to sign the word "CRY" to his wife.  Tears were in fact rolling down his cheeks as he realized that he had made it through surgery.  He was so thankful to be alive!

Sitting up!

Walking!

The constant reminder of his miracle!

I should also mention that just 6 months after his transplant, Jay ran a marathon!  I stand in awe.

As I reflected on my time with Jay, I couldn't help but marvel at this divine appointment that God so carefully orchestrated for me.  He always knows exactly what we need, just when we need it.  In my case, that was someone to show me that everything is going to be ok and that there is life after a transplant.  I now have a friend who understands exactly what I'm feeling and can empathize with my fears, my frustrations and my crazy emotions.  I truly believe we were meant to meet, for such a time as this.  God provides!!

I mentioned in my last post that the next step in being listed is to spend three days in Nashville going through extensive testing in order to gain clearance to move forward with surgery.  My Mom and Matthew will go with me for the testing and Matthew's Mom will have to come into town to care for Kyndall during those three days.  I had been told you really don't get to choose these dates, but rather they are more so assigned to you.  My parents as well as Matthew's parents will all be up here the weekend of February 8th, celebrating Matthew's birthday since we're unable to travel home.  I had mentioned several times to my Matthew how convenient it would be if they would schedule my test dates the following week, so that our Moms didn't have to make another trip up.  I almost squealed with delight when a nurse called me last week and informed me that my test dates would be February 10th through the 12th.  PERFECT!  That's exactly what I was hoping for!  Again, the Lord knew the desire of my heart and He granted it!  It may seem like a small thing, but to me it's just another sign that He's ordering my footsteps and has His hand all over this entire process.  He is showing me favor even in the little things!  So, Monday February 10th through Wednesday February 12th the three of us will be in Nashville together as I am poked, prodded, scanned, examined, and questioned in order to ensure I'm completely healthy (otherwise) and would be a good candidate for a liver transplant.  Assuming all checks out well, my case will be presented to the board and I will then officially be listed.  I feel like on my listing day, things are suddenly going to get very real.  With every ring of my cell phone, my heart will drop, wondering if that's "the" call that we've all been waiting for.

One of my biggest fears about this whole thing has been how we are going to afford it all, financially.  Do you know what the average cost of a liver transplant is in the United States?

$586,000

I don't know about you, but our family certainly doesn't have that kind of money just laying around.  As much as that number terrified me, I tried not to dwell on it and I reminded myself that the Lord would provide.....He always does!  I wasn't sure how or when, but I knew that He would take care of it in His perfect way.  Today I received a call from Carol, who has been assigned to me by our insurance company, as my own personal transplant case manager.  She couldn't have possibly been any sweeter or more caring and I feel like after our TWO HOUR conversation, I've actually made a new friend!  She'll be with me through this whole process to answer any questions we may have and to just be my advocate in general.  One of the most pressing things I wanted to ask her was regarding the financial aspect and what we could expect our insurance to cover.  My mouth nearly hit the floor when she told me that this entire process from start to finish will not cost us a single penny and will be covered at 100%!  Thank you, LORD!!!  What a welcomed relief those words were!  Not only that, but we will also be given $10,000 to be spent however we feel necessary to cover any additional expenses we may run into.  This includes but is not limited to gas, hotel stays, food, airline tickets, rental cars, etc.  It will even cover the expense of the corporate apartment in downtown Nashville that we will have to rent for a month following my discharge from the hospital.  I will have to be seen every other day and monitored very closely for several weeks following my release, so they require transplant patients to stay local.  The only way to do this is by temporarily renting an apartment and essentially living in Nashville.  Any cost associated with that will be covered as well, from the rental fee to utilities to groceries.  I feel like a huge weight has been lifted from my shoulders in knowing that this transplant will not be a financial burden on our family in any way.  God provided in a mighty way by having all of our hospital costs covered, but then He went above and beyond with the $10,000 allowance!  I just cannot thank Him enough for this unexpected blessing!!!  He is so faithful!

This week I have really felt God's presence and witnessed His provision like never before.  His timing is so spot on and He always goes above and beyond what we could ever ask or imagine.  It makes me wonder why I ever doubt Him in the first place?  Obviously, He's got all of this in His control and I just need to sit back and let Him do His thing!

And now, because I just want to make you smile even more than you already (hopefully) are, here are some fun pictures from this past week!

We are still fighting the potty training battle and it's about to be the death of me.  Earlier this week, as we both sat waiting anxiously for something to happen, she declared that she needed to drink some juice out of her "fancy balentine cup" in order to make her go pee pee.  Classy, huh??

We made "balentine tookies" one night this week, just because.  I'm trying to be much more intentional these days about enjoying the little things.....even if that means staying up past bedtime and eating way too many cookies!

Our dinner guest tonight......a glimpse into the world of Kyndall Anne Hughes.  Take note of the cape as well as the sunglasses.  Some battles are just not worth fighting!

I adore this goofy girl and her wonky imagination!!

I'll end this "brag" post with one of my favorite scriptures, which I feel sums up my week pretty well.....

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.  Whatever you have learned or received or heard from me, or seen in me—put it into practice.And the God of peace will be with you."

~Philippians 4:6-9