4th of July and an Unexpected Goodbye

This past weekend we celebrated the 4th of July with a fun little getaway to Nashville.  I had heard the fireworks show there was "the biggest in the country" and decided a few weeks ago that we should find out for ourselves by driving over for a few days.  My Mom and sister decided to join in on the fun and drove up from Tallahassee.

On Friday morning we made a trip up to Vanderbilt to visit my friend and fellow liver transplant recipient, Craig and his wife Jennifer. More on that in a bit.  After our trip to the hospital we showed my Mom and Kelly around the Opryland Hotel, which took several hours.  We ate lunch there, saw the sights then headed next door to Opry Mills outlet mall. Shopping, a carousel ride, a train ride and lots of walking later, we called it a night.

Can't visit the transplant floor at Vandy without my usual picture.  Going on 10 months since I first stood in front of this mission statement!

 Opryland Hotel

It was quite an different feeling experiencing what it would be like with TWO kids!  So quickly you forget what it's like to lug around a stroller, diaper bag, baby food, diapers, etc.  Matthew served as the chauffeur for this train because it was pretty heavy....

When in Nashville......

A carousel ride in the mall

Wyatt's first time!

 Every single time we go to this mall Kyndall begs to ride this silly train, which is nothing more than a money pit.  I finally said yes this time and for $10 she and Matthew got a whopping 4 minute ride around inside of the mall.  Her excitement was worth it, though.....

On the 4th we woke up to some pretty crappy weather and the forecast didn't give us much hope for improvement as the day went on.  In fact, it was supposed to get worse the closer we got to fireworks time.  Bummer.  We still made the best of it and spent much of our day at the Adventure Science Center, which is one of our favorite places in Nashville.

Little Miss USA

Kelly, Wyatt and Kyndall in their matching monogrammed shirts.  Thanks, Mrs. Gloria Barber!!

I took this picture the last time we were at the science center, almost a year ago.  At this time I was still waiting on my transplant but thought it was pretty cool to show Kyndall what it would be like in the operating room.  She wasn't too sure.....

She was much more at ease this time!  Ha!

Beautiful views of Nashville from the science center

This is so funny to me!  One of the activities was a relaxation competition.  You put these sensors on your head and whoever is the most relaxed will move the ball in their direction, based on their brain waves.  I have no idea where Kyndall has ever seen this type of pose, but she did it so then Matthew followed.  Kyndall ende up winning!

We know a thing or two about these....

And these!  I was sitting down taking a break when she came walking up and said "here's a liver for ya, Mommy".  She will probably need therapy someday.

We had some time to kill before the fireworks started so we had ice cream at Ben and Jerry's then did some more shopping.  Our plans were to head down into the masses of people and watch the fireworks from the bridge but with the rain we quickly nixed that idea.  Instead, we found the perfect spot on the top deck of one of Vanderbilt's parking decks.  We stayed in the car and didn't get wet but had a great view. We even tuned in to the live stream on our phone so that we could hear the orchestra playing along with the show.  Even though it wasn't what we had planned, it was still fun and Kyndall thought it was "the best day ever".  (Currently her favorite saying)

Ice cream at Ben and Jerry's

Four adults and two kids packed into one SUV sitting in the rain watching fireworks!  Memories!

Matthew and I drove back to Jackson and didn't get home until around 1:15 a.m.  My Mom, Kelly, Wyatt and Kyndall stayed one more night in Nashville before making the long trip back to Tallahassee on Sunday.  Kyndall will be spending the next two weeks with my parents which is a much welcomed break for me.  I love my girl but this summer has proven itself difficult to keep her busy and occupied with my limited energy reserves.  My parents have big plans for her which include two weeks of swimming lessons, a trip to see the new minion movie, a trip to Wakulla Springs for a boat ride and who knows what else?  She'll have a blast and I will spend the next two weeks catching up on some much needed things around the house---Like cleaning out and purging her playroom!!

Back to my friend Craig.  I met Craig and his wife Jennifer just a few months ago through my affiliations with Vanderbilt.  Craig and Jennifer are from the Houston area and Craig has the same rare disease that I have, PSC.  He had been waiting on a liver transplant for a few years in Houston when he and Jennifer decided it was in his best interest to have him listed at Vanderbilt.  Craig had several calls that turned into dead ends, as well as one in which he willingly chose to give the liver to a patient who needed it more than he did.  Wow.  When I heard that, I knew this man was of great character.  Craig and Jennifer moved to Nashville in May and just a few days after arriving, the Lord provided a healthy, perfect liver for Craig.  His transplant was a success and he was doing great.  I enjoyed getting to know his wife Jennifer during this time, as she would often call me late at night with questions, concerns, or just to vent.  I had found some very special friends in Craig and Jennifer and I knew it was no accident that our paths had crossed.

Meet Craig and Jennifer....

Leaving the hospital after his first transplant on May 12th

Sight seeing in Nashville while he was recovering.  He was doing great!!

Just a couple weeks after his transplant, Craig was readmitted due to a fever.  (That's nothing too shocking---same thing happened to me.)  I wasn't too worried when Jennifer texted me and told me this news.  As time went on, they realized it was actually much more serious than they had anticipated.  Craig had experienced a blood clot in one of the main arteries to the liver, which was causing all kinds of problems.  It wasn't long before the doctors delivered the devastating news that he would in fact need a SECOND transplant, ASAP.  My heart sank when I heard the news.  I couldn't believe that after waiting so long and doing so well that it had come to this.  I should also mention that Craig has a very rare blood type so healthy liver matches are hard to come by for him.  

Getting ready for his second transplant

I visited Craig and Jennifer at Vanderbilt while he was waiting on his second liver and I enjoyed spending time with them.  Craig was talkative and lively, not in any pain and overall looked and acted very normal considering he had just had a transplant.  In spending time with the two of them I began to feel as though I had known them my entire life.  We just have so much in common, including our faith in God.  Craig and Jennifer are by far some of the most faith-filled, Jesus loving people I have ever met.  They constantly gave God the glory and praise for every stride that was made in his recovery.  I stood in awe at their strength and unwavering faith during their time of waiting.....again.  

Thankfully, Craig didn't have to wait long!  God faithfully provided another healthy liver for Craig just about a week after he was put back on the list.  Amazing!  The surgery was much more difficult than the first one and the surgeons (who happened to be the same surgeons who performed my transplant!) told Craig and Jennifer to expect a tough recovery.  Craig was up for the challenge and fought hard to bounce back.  

While Craig was recovering from the second transplant, I made another trip to Nashville to visit them and to celebrate Jennifer's birthday.  Nobody should spend their birthday sitting in a hospital, but if you have to then you should at least have cupcakes and balloons!

Visiting on Jennifer's birthday

A few days later Craig was released to go back to his apartment to continue his recovery.  Things were difficult but he was making small improvements each day.  Then, things began taking a very different turn.  Long story short, Craig was readmitted to the hospital a few times and on his last readmission, he ended up going into cardiac arrest and was unresponsive for eleven minutes.

For eleven minutes the doctors and nurses worked frantically to revive Craig.  Finally, they got a heartbeat but Craig was not conscious.  Eleven minutes.  That's a very long time.  For several days he was intubated with a machine breathing for him since he wasn't able to do so on his own.  Around the middle of the week the doctors said that Craig was making great strides and that his lungs looked better from the aspiration so they decided to begin weaning him from the sedation and the ventilator.  Craig did not wake up.  We began praying (and many of you prayed as well!) that Craig would wake up.  Jennifer was so strong, never losing faith that her sweet husband was going to wake up.  However, she did say to me "Craig will need a miracle to leave this hospital".  Things were serious, but she never lost faith.

All week I was burdened with the thought of my precious friends.  I could not get them off my heart or mind.  I just kept wishing there was something I could do.  I couldn't believe that after all he had been through---missed calls, moving to Nashville, putting their lives on hold, giving up a liver to someone else in need, a failed transplant, a second transplant, etc. ---that it had come to this point.  I'd be lying if I said I didn't question God's plan a time or two.  I felt frustrated for my friends.  Why would God do this to such a sweet, sweet family?  Why bring him this far for THIS??

I posted this on my instagram and many of you commented saying you would pray for my friend.  Thank you for that!

On Friday I went up to the ICU at Vanderbilt to visit Craig and Jennifer.  My Mom and sister went up with me and Matthew stayed in the lobby with Kyndall.  Perhaps I'm naive but I assumed that when I saw my friend he would simply look like he was just asleep.  I knew there would be machines and tubes and IVs but I was not in any way prepared for what I walked into that day.  

I will not go into details as to preserve Craig's dignity, but what I saw was absolutely shocking.  I would never have recognized my friend.  As I rounded the corner into his room my breath was taken away by my first glimpse of him.  Quickly, I looked away, wishing I had never seen what I did.  Now, I cannot get that image out of my mind.  I have tried so hard to forget it but I cannot.  It's not how I want to remember my precious friend.  

I stood talking to Jennifer and her sister with my back turned to Craig.  I wanted to be there but I didn't want to see him again.  Not like that.  Jennifer was so composed and so collected.  Meanwhile, I stood there just sobbing as she recounted all that she had experienced over the past few days.  She told me the entire story without once breaking down.  Her strength amazes me.  At one point my Mom walked into the room and then had to quickly excuse herself because she too was shocked and saddened by what she saw.  My sister couldn't handle it either.  I think it just hit way too close to home for us.  So easily that could have been me laying there being kept alive by machines.  How blessed our family is not to be walking this same road!  Our hearts just absolutely broke for them.  In a way, I actually felt guilty.  Why did I survive and Craig didn't?  

Jennifer told me that she had prayed and told God that she didn't need Craig.  She wanted him, but she didn't need him.  Though she didn't want to, she could survive without him.  She told God that if He needed Craig more than she did then He could take him.  Wow.  Again, I stood there just sobbing, my heart breaking into a million pieces at the thought of all this.  

What made me so sad through all of this is that believe it or not, his new (second) liver was working perfectly.  This had less to do with his transplant and more to do with a freak accident in which he aspirated during a scope which eventually led to him going into cardiac arrest.  The doctors told Jennifer that from the neck down, he was doing great medically speaking.  But those 11 minutes proved to be critical.  

I was able to meet Jennifer and Craig's daughter, two sons, their newborn grandson and several other family members who had all flown in to be there at the hospital.  They were all waiting with great anticipation for Craig to wake up.  

On Saturday morning a CT scan of Craig's brain was done.  Later that morning I received the devastating news that the doctors determined there to be irreversible brain damage and he would be taken off life support later that evening.  I was sitting at lunch just a few blocks from the hospital when I received the news and I wanted so badly to go running back up there to the 9th floor just to hug Jennifer.  My heart broke for her.  I absolutely could not believe this was happening.  How did things go so wrong??  Just a few weeks ago he was sitting up in the bed comparing PSC stories with me and joking about mine and Jennifer's love for all things monogrammed.  Now.....this???  NO!  I was so angry.  Angry, sad, frustrated, confused, guilt ridden....you name it and I felt it.  If I felt this way I could only imagine how his family felt.  I had only known him a few weeks yet my emotions ran strong because it just wasn't right.  It wasn't fair.  

They waited for a few more family members to arrive before releasing Craig to his eternal home late Saturday night.  Jennifer caught an early flight back to Texas, and never even returned to their townhouse in Nashville.  Their journey had come to an end, and not the end that any of us had anticipated.  All I could think of is how she must have felt to have left her home and her family, full of excitement and fully expecting to return home with a healthy, healed husband.....yet she returned home without him, with a broken heart and a whole new way of life before her.  How does one go on from there??  Where do you begin??

As I said, I think this entire experience was carefully orchestrated by God in order to make me wake up and realize just how blessed and lucky I am.  I have done a lot of whining and complaining lately and despite the bumps I've had since my transplant, I have had it pretty easy compared to some.  Maybe it was God's way of safeguarding my heart or again, maybe I was just naieve.....but I was never too concerned about anything happening to me the way it did to Craig.  I fully believed that I would return home to my family and friends and go on living a normal, healthy life.  Never once did I think I might drive out of Jackson and never return.  Sadly, it's a harsh reality that I've now been slammed with.  Our days are numbered, my friend.  The frailty of life is more evident than ever to me.  None of us are promised tomorrow and although I know that in my head, I now feel it in my heart.  

Craig was loved by so many and as I look at his Facebook page and read all of the heartfelt comments, there are several things that stand out to me.  First was his love for God and his unwavering faith.  There isn't a single post that doesn't mention what a mighty man of God he was.  Second is his compassion for people.  So many wonderful things were said about him and his character.  He was a good, good man who never met a stranger.  And lastly was his love for Jennifer.  He adored his beautiful wife and she felt the same way about him.  She spent the past two months caring for him as he recovered, just as Matthew has done for me.  My heart is so very sad for her.  

Craig's funeral will take place at the end of this week in Texas and I've already made arrangements to be there.  I'll be heading out early tomorrow morning by myself.  I'm doing this just as much for myself as I am for Jennifer and Craig.  I need to be there.  

As Kyndall has overheard all of this the past few days she has had many questions.  Afterall, she met Mr. Craig and even gave him a stuffed liver just like the one she was given!  She told people that Mr. Craig had two livers in his belly.  Ha!  She obviously missed something along the way.  Through my tears I explained to her that Mr. Craig's body was no longer working the way it should and that he would be going to Heaven to meet Jesus.  She looked at me and without missing a beat she said "well Mommy, you know that in Heaven everyone gets healed."  Wise and prophetic words from my four year old.  Oh, to have that childlike faith!

In keeping in line with his selfless character, Craig's final act of love was one of great honor.  Though none of his organs could be donated, Craig was a bone and tissue donor.  Because of him, others will be blessed with the gift of health.  In less than two months time, Craig was a recipient twice and a donor once.  Wow, what a story.  Things truly came full circle.  

For the past few weeks I have been toying with the idea of doing something completely out of my comfort zone.  This entire experience with Craig has confirmed that this is what I need to do.  I am going to start the process of becoming a volunteer on the transplant floor at Vanderbilt.  Since September I have felt like I wanted and needed to somehow give back for the priceless gift I've been given but I've been afraid to step out and do it.  But now, I know this is my passion and my calling.  It's not exactly convenient considering I live two hours away but I'm praying the Lord will provide a way for it to all work out so that I can pour myself into this completely.  Pray for me as I begin this journey.  I am still so "fresh" from my own experience that I know it will be difficult to see others walking through it but I also know that I can offer them hope during their time of recovery.  Mostly I am afraid my emotions will get the best of me.  Even though it's been almost ten months, I still cannot talk about anything related to my transplant without getting emotional.  It's a mix of thankfulness, unworthiness, sadness and possibly even a touch of PTSD.  They are mostly happy tears but also tears of uncertainty and tears of sadness for my donor and other friends who are still waiting on their gift.  Pray that I am able to put these emotions and my own experiences aside so that I can effectively carry out my job as a volunteer.

In my life I have only known four other people who have PSC.  Two of them have now passed away due to complications from this awful disease.  My friend Aimee who was only 20 years old and now Craig who was only 48.  I sincerely pray that someday there will be a cure for things such as PSC.....Or that Jesus would just come quickly and take us before this disease does.  Why do bad things happen to good people?  That's a question I've had circling in my mind all week.  I know the "Sunday School" answer but really......why would God choose to take someone like Craig or Aimee?
My heart has been sad this week and just been walking around in a fog.  I was able to talk to Jennifer on the phone this morning and that did my heart good.  She truly amazes me with her strength and fortitude.  I am so looking forward to hugging her on Thursday in Texas.

This is not the way I want to remember July 4th, but it is what it is.  This day will always hold a bittersweet place in my heart.

Craig's family has asked that each person who was even remotely touched by his story prayerfully consider becoming an organ donor.  Nothing would mean more to them than to know that in the midst of Craig's tragedy he was able to bring more awareness to this great need.  We cannot cure PSC but we CAN save lives with this selfless gift.  Why would you not want to be someone's hero?  It frustrates me that there are still people who refuse to sign the registry.  But that's an entirely different blog for another day.

I'm off to Texas to say goodbye to my friend.  I hope to return feeling a little better than I do now.  On the bright side, I will get to spend a few days with my BFF Glory!  God knew I needed to see her and as big as Texas is, he just happened to let Craig and Jennifer live very close to Glory.  It's the little things....