A Sweet 'N Sour Summer

I've had a few people ask me why I haven't been blogging lately and the answer is.....I just haven't felt much like it.  I feel like I don't have anything exciting or fun or happy to share, so I might as well just keep my thoughts to myself.  But then I remembered that I write this blog for ME.  Yes, there are many people who read it but my sole purpose in starting this blog 3 years ago was to document my life (our lives) and the various seasons that come along with it.  That means the good, the bad and the ugly.  If I want this blog to serve as a memoir and a true reflection of our lives, then I need to not just limit it to the happy times, but the not-so-happy times as well.  I think in today's age of social media it's very easy to "fool" the world into believing that our lives are peachy and perfect and that we are truly "living the dream".  I heard a quote recently that said "May your life someday be as perfect as you make it seem on Facebook."  How true is that?!  I'm certainly guilty.  Don't get me wrong---I'm not saying we should air our dirty laundry to the world and put our entire lives on display, but at the same time I think that all too often we hide behind the comfort of our computer screens and make our lives appear flawless when in reality LIFE is not flawless and never will be this side of Heaven.  My goal as a wife, mom and Christian is to be transparent and REAL because I feel that's how we build strong and lasting relationships with people.  Nobody likes a fake, right?  But at the same time nobody likes a Debbie Downer either.  I think there's a fine line between the "woe is me" mindset and the "my life is PERFECT" mindset.  It's a delicate balance and one that I admit to not being very good at.  I have come to absolutely hate conflict and negativity so I tend to flee from it at all costs.  I will look you in the eye and tell you everything is great when really it's not.  And chances are, you'll believe me.  Maybe that stems from being chronically ill and serving up lots of lip service for the sake of keeping things light hearted, or maybe it's just the personality I was born with.  Who knows?  I personally just don't enjoy dwelling on the negative so I tend to sweep it under the rug and run from it.  But we all know that's not a healthy way to live, for many reasons.  

You're probably thinking I'm about to drop some huge bombshell of bad news right about now, huh?  No worries, I'm not!  Sorry to disappoint!  I'm just one of those people who needs to write my feelings down when I get like this.  It's therapeutic for me in a weird sort of way.  Sure, it's kind of strange to be sharing it with all of you, but that comes with the territory of having a public blog I suppose.  Even if nobody ever reads this post, it will still make me feel better just to have my thoughts on paper.....errr....on screen..??

So, what is it that's been plaguing my mind and heart, you ask?  I really can't put my finger on it but it definitely stems from this whole waiting game that I've been doing for the past 4 months.  Since the end of February when I was officially placed on the liver transplant list, my life has essentially been put on hold in every sense of the word.  I can't travel.  I really can't even leave the city of Jackson.  I can't make long term plans.  Heck, I can't even make plans for tomorrow, much less weeks or months down the road.  I can't commit to doing anything or being anywhere or helping anyone. I can't volunteer in the church nursery or sign up to take meals to friends who will be having babies.  I can't plan a summer vacation for my daughter or even a fall vacation for that matter.  I can't even consider expanding my family despite my heart's deepest desire to do so.  Because to my travel restrictions I'm missing out on precious moments with my family back home that I long to be a part of.  This past weekend was my family's annual reunion and it's something I look forward to all year long, as it's the only time I am able to see many of my cousins.  This is the first year I've ever missed and it killed me not to be there, sharing in the memories of another family fish fry under the cool shade of the pecan tree at my Grandparents' house in Two Egg.  This past weekend I missed out on my sister's baby shower, which made my heart so so sad.  I was able to watch via Skype, but it's just not the same as being there.  What makes my heart even more sad is that unless this transplant happens soon, I will likely also miss out on the birth of my very first nephew.  That's heart wrenching to me.  Aside from all of this, I just miss HOME.  I haven't been home to Tallahassee since Christmas and that's by far the longest I've ever gone between trips.  Usually I'm there at least every 6 weeks or so.  I miss the sights and smells and familiar faces of my home town.  I miss my FRIENDS.  I miss my home church.  I miss my favorite restaurants and stores and parks.  I miss the BEACH.  I miss just being FREE.  

Having my Mom here for two months made things a little better, but she's been gone a couple of weeks now and I'm back to feeling lonely and sad as I sit longing to be free from these restrictions that have been put on my life.  It's not just affecting me, it's affecting the whole family.  I feel so incredibly guilty that Kyndall isn't able to have a fun-filled family vacation like most of her friends are having this summer.  Do you know how many times a week she asks me when we can go to Disney World?  Someday, sweet girl.....someday.  I couldn't even sign her up for fun things like dance camp or the summer pre-school program because I wasn't sure what our lives would be like when it came time for those things.  Again, I can't make any long term plans and that is so frustrating.  

So, we take it one day at a time and continue to wait.  Each morning that I wake up without receiving a call the night before, I try to make the most of the day.  Granted, some days that involve never leaving the house and enjoying a lazy day in our PJs, but that's just the way it goes when your energy reserves are all wiped out.  Typically, if I've had a busy day then I have to spend the next day "recovering" by staying close to home and taking it easy.  I get worn down so easily and that too is very frustrating and probably contributes to my summertime blues.  I guess the bottom line is I just feel trapped.  Trapped by restrictions of travel, restrictions of time and restrictions of my energy level.  I think that eventually, this would probably get the best of anyone who was living this life.  But, it's a season. For whatever reason, the Lord has seen fit to have me walk through this season and I know that there is an end to the struggle.  I just wish I could see that end or know when to expect it.  But His ways are not our ways and His plans are not our plans.  I have to keep reminding myself of that during this season of WAITING.  I can tell you this much....once I am free of my chains, you won't be able to stop me!  I plan to make up for lost time in every sense of the word!  =)  I can't wait to have my energy back and to feel good and to have absolutely nothing holding me back from enjoying this incredible life that I've been given!

Enough dwelling on the sadness---on to happier news.  Many have asked for an update on my health so I will do my best to explain the roller coaster of events that have taken place since my last update.  A couple of months ago when I was flown to Vanderbilt and put in ICU because of the internal bleeding, I was considered "critical".  My MELD score was a 31, which is extremely high and very uncommon, as most patients are transplanted by the time they reach a MELD in the mid 20's.  Being a 31, this put me at #1 on the transplant list and I stayed in that position for several days.  Once I was released from the hospital over Easter weekend, I continued to have my weekly labs drawn to keep my MELD score up to date.  Slowly but surely, my labs started dropping and my numbers started to become stable.  With a drop in my labs comes a drop in my MELD score and ultimately a drop on the transplant list.  The "better" your labs look, the less sick you are and therefor the less priority you have on the list.  I have watched in complete shock as my MELD score dropped from a 31 all the way down to a 19, just two weeks ago.  What in the world?!  I haven't changed a single medication or done anything differently, yet my score has dropped significantly in a short period of time.  This may sound like great news, but really it's not.  Unfortunately I still feel just as awful as I did when I was at a 31 and haven't experienced any relief from the fatigue, the itching or the jaundice.  So, with all that being said I might as well have a high MELD score so that I can at least have priority on the list.  If I'm going to feel bad either way, I'd much rather feel bad knowing that I'm at least at the top of the list and close to receiving a call.  This past Friday my score of 19 expired and I had new labs drawn and I jumped up by two points to a MELD of 21.  But a score of 21 is still not very "competitive" and therefore I am probably very low on the transplant list at this time.  My doctors really have no explanation for this drop and have told me that this "happens sometimes" and that eventually my numbers will go back up.  They explained that sometimes your body works really hard to "fix" everything and that is reflected in your labs at various times.  However, that's a temporary "fix" and eventually the true nature of my illness will resurface and be reflected in my labs.  

Last Tuesday I went to Nashville for a follow up appointment with my GI doctor, who I see every couple of months just for good measure.  I don't know why but recently I've just really had this longing to have my ileostomy reversed.  It's been almost a year since my colectomy (July 2nd) and I'm just kind of over it.  I'm thankful to be free from the awful burdens of Crohn's disease, but at the same time I definitely do not love my ileostomy the way that some do.  I love the freedom it affords me and the pain-free life that I'm now able to live but it's not without sacrifice.  Most of it is mental/emotional and something I just have to get over on my own.  But, I wanted to at least discuss the options with him, since this is still physically very much a possibility.  Many people have theirs reversed after giving their small intestines a time of "rest".  My surgeon gave his blessing on it a few months ago and told me that once I get past my transplant he would discuss it more with me.  My GI doctor still needs a little convincing, as he is worried about the dysplasia returning and ultimately turning to cancer.  It was kind of a moot point today and my efforts were not very fruitful since nobody will even touch me as far as surgery goes while I'm in such a fragile state.  But, it's something that maybe I can look forward to in months to come.  Yes, it's another surgery and yes it's not without risk but goodness knows I need something positive to look forward to and hope for right now!  Just another reason I'm ready to get on with my life and put this transplant in the past.  

Despite the "sour" moments I've had this summer, we've also had lots of sweet ones!  In fact, I'd definitely say that the sweet has outweighed the sour so far and I guess that's a good thing.  Kyndall got her first taste of Vacation Bible School a few weeks ago at our church and she absolutely loved it!  She was so disappointed when the week ended that I found another church who was offering it and signed her up for the following week.  Kyndall also had her very first sleep over guest which was a lot of fun.  We've played outside, made crafts, enjoyed time with friends, taken trips to the library, had a few lunch dates, splashed in the kiddie pool, taken in a baseball game, and have just generally worked really hard to make the best of the situation.  I've enjoyed having Kyndall at home with me everyday, rather than her being in pre-school two days a week.  Many parents feel differently during the summer and dread having their kids 24/7, but I really do enjoy her company.  She is at such a fun age and I love having her as my little buddy.  She's getting so independent which makes things way easier for me but also makes me a little sad.

It's been a while since I dumped all of my iphone pictures onto the blog, so here they are in somewhat random order.  There are a lot of them, but like I said we've been keeping very busy and there have been lots of fun things to document!

I've been enjoying as many of these as possible.......

And naturally I got pretty excited the day I saw this glorious sight in the Target parking lot

Thought about hijacking it, but decided that wasn't the best idea

This is one cool kid

Enjoying a cupcake from Woodstock Bake Shop

New additions to the already ridiculous collection of bows my daughter has

Utterly ridiculous

New goggles for the pool

Opening a package from Nonie

There's been lots of 4 wheelin' around our backyard 

Enjoying our new favorite snack that I found at Sam's!  Have you tried it??  You must!!

 The bag is almost as big as she is.  It's called Boom Chicka Pop and it tastes like home made kettle corn which is another addiction of mine.  Kyndall is never able to remember the correct name so she asks for it by "Chicken Pop".  It works.

This pool with the built in slide was the best $35 I've spent so far this summer!

First day (ever) of Vacation Bible School and she LOVED it!  

VBS Day 2

The theme was Agency D3 this year, which was a detective theme.  Each day she came home with new detective "gear" and insisted that I refer to her as "Agent Elsa"

VBS day 3

VBS day 4

My friend Jennifer was a volunteer in the craft room so she sent me some pictures throughout the week of Kyndall in action

VBS day 5

VBS at Englewood is a BIG deal!  They average well over 1,000 kids each year and there are hundreds of volunteers that work all week long to make it a success for our children.  I pulled up the very first day to pick Kyndall up and saw about 10 of our church vans all lined up and waiting to take our Mission Jackson kids back to the surrounding neighborhoods.  It made my heart smile as I was reminded of how mission minded our church really is!  These kids may be less fortunate that most in some ways, but Englewood is dedicated to making sure they know the love of Jesus and are loved on and well cared for at VBS each year.

After her last day of VBS I found Kyndall passed out on her bean bag, still wearing her super hero cape that she had been flying around in.  This is a child who has not napped in over a year and rarely even slows down throughout the day.  Can we please have Bible School every week??

My sister spent a few days with us and she french braided Kyndall's hair every single day while she was here.  (You know, like Elsa).  Kyndall thought it was fun to see how curly her hair was at the end of each day when we took the braids out.  It kinda took me back to the days of "crimping" my hair in elementary school!  Gotta love the early 90's!

While my Mom was here we enjoyed several lunches at one of our favorite places, Brooksie's.  I could eat my body weight in their fried chicken!!!!  Kyndall's favorite part is getting a gum ball out of the machine on our way out.....

I had to take a picture of the back of this outfit!

Sometimes, it's just too hot for clothes!

More 4 wheelin'.......

I finally did some research and found a new cars seat for Kyndall.  Car seat shopping is OVERWHELMING, to say the least!

Trying it out for the first time---She wasn't so sure about it and kept asking for her old one back.  But now she loves it.

Kyndall got this stick horse (actually made from a pool noodle!) from a friend's birthday party and she hasn't put it down.  She even lays it at the end of her bed at night so that it can "sleep" with her!  Great party favor idea, Mrs. Stacie!!

We have a "pet" bullfrog that appears on our front porch every night and Kyndall loves to watch him.  He's gigantic and gross but she enjoys looking for him each night and even named him "Hippy Hoppy".

We have a few other "pets" that have become regulars around here and these are much more enjoyable in my opinion.  My Mom bought us these bird feeders while she was here and the first thing Kyndall does every morning is open the blinds in the kitchen so that she can watch the birds come and go.  Our favorites are the hummingbirds.  Look closely and you can see them through the blinds......

My new addiction.  I have always loved sour things but for some reason I crave sour candy ALL the time lately.  I go through about a box of these a day.  If you need to know the way to my heart, it's through a box of nerds and a large Coke Icee.  I do love my junk food!

Fresh peonies from our backyard!  They made my house smell SO good!  Too bad they don't bloom but for just a few weeks each year.

We've had some pretty crazy weather lately with lots of wind and rain and even a tornado a few weekends ago.  It was the first time I've ever heard the sirens go off and let me tell you, it was SCARY for this girl!  Kyndall's poor play house fell down yet again from the strong winds

This was the view as I was racing home the day the tornado sirens were going off

A Saturday afternoon spent with Daddy at Chuck-E-Cheese while Mommy saw a movie with friends

Followed by dinner at Red Robin

Kyndall had some money in her piggy bank that she wanted to spend so we headed to Target....

I can't remember exactly what she bought but I do know some of it was CANDY.  She get it from her Mama.  =)

Another day, another hummingbird

She had so much fun at VBS that I signed her up for a second week at another church.  Here she is before leaving one night when I thought she looked especially cute!

Kyndall has this new "thing" about ribbon.  She swiped a spool from my craft closet and asked if she could have it.  Of course I said yes because I figured it was harmless.  Little did I know, she would soon be setting up BOOBY TRAPS all over our house!!  I walked into my bathroom one afternoon last week to find this......

?????

And, she is still infatuated with pipe cleaners.  Between the ribbon and the pipe cleaners, my house is "decorated" from top to bottom.  I don't even bother moving them anymore.  Here are just a few of the many ways Kyndall has left her mark around the house........

On my bathroom cabinets

Hanging from my bed (this one is a little disturbing, considering there's a doll hanging by her neck)

In the hallway

In her bathroom

Close up of her bathroom---this one obviously took some time and patience!  Those eggs are carefully balancing inside of the pipe cleaners

On her play kitchen

Even the Barbies are wrapped in ribbon

On our entertainment center (note that she added my green "donate life" bracelet on the end of this one)

Kyndall and Caroline had a sleepover at our house recently.  Kyndall has spent the night at Caroline's countless times but this was the first time we've ever had a friend spend the night here!  They requested a snack of popcorn and juice before bed.....

After about 17 trips into Kyndall's room, countless threats and one good spanking (for my child, of course) they were FINALLY off to sleep!  Perfect little angels.....

We've spent a lot of time keeping cool under the shade of our back porch in the kiddie pool (p.s. I think she looks so old in this picture!)

I had an appointment in Nashville last week so Kyndall hung out with Glory and Caroline for the day.  Glory took the girls to get their nails done and my goofy child accidentally scratched her nose while her nails were still wet.  Glory sent me this picture......

Then they enjoyed some backyard fun in Caroline's playhouse and on her new slip 'n slide.  These two love each other SO much!  It breaks my heart to think that in a few weeks they may be moving away from us.  Kyndall isn't going to know what to do and neither will I.  

Apparently Kyndall's swimsuit didn't allow her to slide fast enough so Glory let her run around topless.  Of course she did.  She's Glory and that's why I love her!

In addition to letting my child run around topless, Glory also sent her home nice and tatted up.....

I guess I can live with tattoos of Pinky Pie, Rainbow Dash and Apple Jack.  It could definitely be worse.

She was very proud of her pretty fingernails.  Thanks for a fun afternoon, Mrs. Glory!!!

While they were getting tattooed and running around topless I was making my way out of Nashville and back towards Jackson when I spotted THIS.....

Can you hear the angels singing??  Oh how I miss Publix!!  

Then, in the very same shopping center I found THIS!!!!!!!!!  MY FAVORITE!  Of course I stopped and had lunch!

There was also a Target next door!  I definitely hit the trifecta!  Maybe this is one thing I'll actually ENJOY about my post-surgery recovery time in Nashville!  

Kyndall still loves Elsa and all things Frozen related, but recently she has a new fascination with My Little Ponies.  (Sure wish I had kept mine from when I was a kid but who knew these things would make a come back 25 years later??)  Rainbow Dash is her favorite, so after a few days of excellent behavior we made a trip to the toy store in search of Rainbow Dash herself.  We were successful!

And now, Rainbow Dash goes everywhere that Kyndall does

We even found some Rainbow Dash clothing items at Wal-Mart

Another new favorite of mine.  SO SO SO good!!  (Especially when paired when a Coke Icee, as you can see in the background!)

My cousin Jennifer took a trip to Disney recently and she loaded Kyndall up on all things Frozen.  She sent her a huge box filled with tons of goodies!  I have an entirely separate blog post for that, complete with the videos of Kyndall opening her prizes.  One of the things she sent was this Elsa wig, which totally trips me out.  When she puts it on she really and truly believes she IS Elsa. Check out the look on her face if you don't believe me.....

Lunch at IHOP (Her choice)

As much as I hate getting my weekly blood draws at LabCorp, moments like this make it not so awful. Mr. Ron always takes extra time to make Kyndall feel special by giving her a band aid of her own complete with a smiley face. On this day as he wrapped her finger they discussed her love for Frozen and she introduced him to Rainbow Dash. Every single person who works in health care could stand to take a lesson from Mr. Ron. As many times as I've seen him over the past year, there hasn't been a single day when he wasn't smiling, joking and HAPPY. He is patient and kind and that means a whole lot to someone in my situation. Plus, he proudly wears my bracelet and always gets me on the first stick! (Which is a true miracle considering my teeny tiny veins!) What can I say....we love Mr. Ron!!!

Last Thursday we went to story time at the local library.  My Mom took Kyndall last summer while I was recovering from surgery and she loved it.  So, we decided to give it another try this summer.  After story time was over I let her get her very first library card, complete with HER name on it.  She was excited, but had a slight meltdown when I wouldn't allow them to put "Elsa" on the card.  I'm telling you, we need an intervention.

She played and picked out a few books to take home for the week

One of the books she picked (completely on her own) was also a childhood favorite of mine.  My Grandma used to sing us the song when we were growing up and I have such fond memories of it!

She spotted the computers and asked if she could play a few games

I couldn't believe it, but she had NO CLUE what a mouse was!  When I told her to put her hand on the mouse she looked at me like I was crazy.  Then, she kept trying to hold it up like a remote!  Boy, do I feel old!  All she's ever known is touch screen, thanks to iPhone and ipads!

She kept forgetting she wasn't on the ipad and tried over and over again to use her finger to navigate the screen.  She found herself getting frustrated because she had to use the mouse, which takes some getting used to.

Later that night chef Kyndall whipped up some homemade pizzas for dinner

Another one of her goodies from her Elsa stash that cousin Jennifer sent---Headphones!  Believe me when I say that we ALL appreciate these!

Every Saturday morning Kyndall comes into our room and we all lay in bed together for a while before getting up for the day.  This past Saturday it was especially sweet.....

It was sweet while it lasted, but before long it turned into this........

So as you can see, it hasn't all been sour.  We've definitely had some sweet times and we're looking forward to more---I just wish they involved leaving the state of Tennessee!

Happy Summer!