He Only Writes Good Stories

Each December our church hands out Advent Family Devotions.  The purpose is to begin in Genesis and hit approximately 22 of the major stories/themes in the Bible leading up to Jesus' birth.  The stories are familiar, yet tying each of them to the coming Messiah is amazing.  Our kids LOVE doing Advent, and it truly has become a highlight of the Christmas season each year.

This year has been a bit different as the Lord has laid on my heart something new.  (I love how He does that....takes the "familiar" and turns it into something you have never thought of before.)

"He only writes good stories."

I first heard this simple sentence a few weeks ago from my dear sister-n-law, Megan, as we were talking on the phone one night.  They live in China, so having heart to hearts and yet being on the opposite sides of the globe is pretty special.  This is something she has repeatedly taught her two (adopted) daughters, who at one point in their young lives found their homes in Chinese orphanages.  As the phrase easily rolled off her tongue in reference to a topic entirely different, it penetrated my heart...DEEP!  It has remained there ever sense.  In fact, I can't get it out of my head.

Do I truly believe that?  God ONLY writes good stories....  My head screams no!  I have either lived through myself, lived along side of others, or simply been a bystander of some incredibly horrific life events.  The loss of your young child, or worse....the loss of FIVE of your children at the same time!  Unfathomable pain, loss, heartache, betrayal. Events that even Hollywood couldn't make up.

How then could my sister-n-law so easily teach this to her daughters?  Girls who I'm certain will have MANY questions (some very painful) the older they get, regarding their "tragic" beginnings.

Then over Thanksgiving my other sister-n-law, Tamara,  absolutely blessed my socks off when she handed me an unexpected gift.  A beautiful bracelet.  The message ("bullets to blessing" Gen. 50:20) behind the craftsmanship truly brought me to tears.  There it was AGAIN!  That same message.  Apparently the Lord was trying to get my attention with this one.

So as my family has been reading through the Bible each night, this truth has been at the forefront.  Keep in mind, these stories are not for the faint of heart.  They are not feel good, cute little Bible stories.  In fact, they too are filled with tremendous sadness, hardship, tragedy, betrayal...  Not sure what could be more unimaginable than Abraham being told to sacrifice his little boy?  What about your own brothers selling you as a slave and being unjustly imprisoned?

This is the major theme of the Bible.  God wrote a beautiful story.  Even though the characters are flawed, and time and time again, it seems evil will triumph...it doesn't.  From the very beginning, He has a plan.  A plan to redeem.  To fix everything that is broken in this world.

As Christmas quickly approaches, I know the busyness of the season can overshadow the very reason we are celebrating.  Instead of focusing solely on the birth of Jesus (which is AMAZING!), I encourage you to think back.  Think of all the stories that preceded it.  Each one, as "tragic" as they were many times, had a purpose.  They all had a role to play to set the stage.  Then when the timing was perfect, God sends his son, Jesus.

So, does it end at the manger?  At the cross?  No.  The story is not over.  He is continuing to redeem.  Continuing to make it all right.  The Christmas Story is only one of the middle chapters of God's amazing storybook.

 Take heart.  I pray PEACE and HOPE over the ones reading this right now that are in desperate need of it!  Your story is not over.  The heartache you are currently living in is but only a "middle chapter."  Let this truth sink in your heart:  HE ONLY WRITES GOOD STORIES!

He is merely setting the stage...the BEST is yet to come!

Hard Lesson Learned

For those that know Caed best, know he is passionate about sports.  Any sport.  Whatever the season, that's what he is spending the majority of his time doing/watching.  He has been this way all his life.

The one sport we were not sure Caed would ever get to play was football.  Last year his doctors in NE cleared that, and said it would be no different than anyone else playing.  His lack of intestines would not be a cause to sit out....other than dehydration (which SBS'ers can get easily).  From Caed's point of view, it was as though someone told him he won a million dollars!  From Mom's....there was a bit of anxiety, yet I remember a time he could not even walk and was hooked to machines.  Therefore, I would be thankful he was able to do the very thing he loved most.  It was a successful first year.  No injuries.  Just pure joy.

This year, however...turned out a bit different.  Back in August when the high school football boys were beginning 2-a-days, Caed came running home asking me if he could be a "lil manager" for the team.  Wow.  What a perfect job for a kid who not only LOVES football, but also being around teenagers (probably from growing up as a youth minister's son).  He was very dedicated to the job.  Got up early for all 2-a-day practices, went to every single after school workout until 6:00pm for almost 3 months.  He traveled not only with the Varsity team, but also the JV...which meant being gone every Thurs. and Fri nights.  He was in absolute heaven.  That is until.....

....it was time for sign-ups for his age division football.  He loved it so much the prior year, so it was a no-brainer that he would play again this year as well.  Todd and I got to thinking.  He is 11.  If he has already committed to helping the "big boys" out every single day after school, and then add in a couple a practices until 8:30-9pm for his own team.....we were about to sign him up for total exhaustion.  So, we threw him a tough card and made him CHOOSE.  Either you can continue to help out the high school players, or you can play yourself on a team with your best friends.  To say this was an easy decision or that no tears were involved would be a lie.

With a heavy torn heart, he chose to stay committed to the high school team.  Todd and I knew this truly was the best choice.  It wasn't easy, however...as the season progressed I think he even saw how wise it turned out to be.

It was a hard lesson, but 100% worth it!

Watching Caed on the sidelines being a "lil manger" this year was almost as fun as sitting in the stands cheering him on as if he had been playing.  He walked up and down the line as though he stood 6 feet tall.  Often he would stretch up to give a pat on the back to one of the Varsity players for a job well done.  And at times, he ((might)) have been guilty of drinking more water himself than offering it to the very ones who needed it most.   A HUGE THANK YOU goes out to our wonderful coaches here in Idalou that allow these little guys to be apart of the team.  I'm sure there are many times they probably get in the way more than actually "help," but the experience the coaches/players give them by allowing these boys to be down there...is priceless.  Todd and I believe Caed learned WAY MORE by being on the sidelines for the Wildcats this year....than if he had put on pads and a helmet and played for his own age group.

One thing in particular I saw over and over from Caed this season was this.....

Whenever a player got injured, Caed was right there.  So concerned.  Waiting and watching the team trainer do his thing.

Since Caed's illness, we have seen great empathy/sympathy from him towards whoever is sick, hurt, hospitalized, etc.... It can even be for other SBS kids who live 1000's of miles across the country whom he has never met.  They can be young or old.  The details do not matter.  The burden he feels for them is the same.

I have NO clue what God's plans are for Caed as he gets older.  I suppose he could be a successful businessman who works in a suit each day on the 80th floor of a high-rise building.  However...knowing Caed and the loves of his life, his passions, his talents....I would not be surprised if the past few months were not a foreshadowing of his future.

Isn't it funny how God can use the worst days of your life in preparation for THE BEST?

God's Prerogative

Today marks 11 years that Caed has been on this earth.  With each passing year, Todd and I shake our heads in awe.  Is it real?  Did we really survive through it all?  It seems like yesterday.  Yet...at other times, it feels as though it was all a dream.  A horrible nightmare.

I can't tell you the number of times I have been face to face with a friend who was staring grief in the face.  Real debilitating grief.  They were in shock.  Trying to cope with the loss of their child, spouse, or family member.  Each and every one has looked me square in the eyes and said, "I truly thought we were going to experience the miracle that you did.  Caed was our hope."

Responding to such a statement always leaves me speechless.  It is in those moments I am reminded once again just HOW GOOD God has been to Caed.  God's goodness, however; should never be questioned when He choses not to heal on this earth.  "Heavenly Healing" is the ultimate.  It truly is the finish line for all those who have placed their trust in the Lord.  It is where we all hope to be someday.  However, for those family members left behind, we naturally pray for healing to take place on the earth.  Selfishly.  Healing, however...is God's prerogative.  He heals who he wills.  It is not from the will or power of any man, but ONLY from God and ONLY for His glory.

The gravity of just how close Caed was to death, always hits me a little harder on his birthday.  I will never forget sitting beside his bed in PICU just staring at him.  With tears rolling down my cheeks I wondered if year #4 had been it.  Had that been his last birthday that we celebrated?  Will he even see his 5th?

Therefore, we have learned that birthdays are not just a day to eat cake and open presents.  They are NOT guaranteed.  Ever.  God does not owe us (or our loved ones) a long, prosperous life.  Today is a day we will turn our praise to HIM!  God, YOU have been good!  YOU have been immeasurably gracious!  YOU have indeed worked all things for good, and we see YOUR fingerprints when we look at Caed!  We are humbled.  We thank YOU for displaying your healing power here on earth.

*This is Caed and one of his very first nurses.  She was a gem and was with him during his entire medical journey at Covenant.   She even came to visit Caed once he was discharged home.  She LOVED Caed and he LOVED her.  They developed quite a bond over the 6 months they were together.  Marla lost her battle with cancer last week.  Our hearts are saddened by this loss, yet know she has been ultimately HEALED in heaven.

Literal Locations

I'll be honest.  There are many times after posting on Caed's blog that I question if the day will come that I have nothing more to write about.  However, I've also learned that when God puts something on my heart, it is STRONG...and it typically comes when I least expect it.  

Literal locations can be oh so sweet.  They can bring laughter and smiles as we remember "the good 'ole days" or moments in ours lives that brought us unspeakable JOY.  We all have them.  They can be buildings or rooms, roads or houses.  Maybe even an entire city.  When we come back to that place, things appear surreal, maybe even a little different. Yet the memory of being there warms our hearts.  Literal locations can likewise go the other direction.  Pain, tragedy, loss....  Going back to the very spot where so much hurt once lived can be crippling.  I have several of these.  Some in which I purposefully stay far away from.....

  Unannounced.  Unplanned.  The Lord took me back to one of those locations today.

As I dropped Caed off this morning (more on that later), I knew I had a good hour to kill.  It was a beautiful morning, so I decided to go to the nearest park and walk.  It was a familiar park.  It is located right down the street from where Todd grew up and his mom still lives.  As I got out of my car, I went through my normal checklist.  Ear phones in.  iPod set to shuffle.  Ready!  I had made it a little over 1/2 way around the lake when it hit me.  Like a ton of bricks.  I stopped.  I turned around to take a good look at what had literally slapped me in the face.  The other runners/walkers continued on pace as I turned around and began walking the opposite direction.  I stopped right here, sat down, and took a deep breath.  In that "God moment, " a new song began to play on my iPod.  "Sovereign" by Chris Tomlin.

The Lord had taken me back to a place.  A literal location which held a very deep painful memory.  It was shortly after Caed's 3rd surgery.  Things were not going well.  There was no significant change for the better.  We were seeing zero progress, and the drs had begun to mention the word  "multi organ transplant."  We had experience with that word.  We knew too much.  We knew the risks.  And we knew in some cases "transplant" equates "a little more time."  You see, Todd's dad had a heart transplant just 13 years prior.  Those words and the reality of our very own child having to experience it....led Todd and I to a conversation I will have trouble ever forgetting.  The words "burial plot" should never have to be spoken between a mommy and a daddy.  I remember my mind spinning.  The room became fuzzy and all I wanted to do was RUN AWAY!

So I did.

I left the hospital that night, got into my car, and began driving....driving....driving.  To where?  I had no idea.  But the Lord was there (although I probably was not feeling his presence right at that moment).  My car turned down a road and stopped.  I got out and began walking.  It was pitch black out.  Probably way after midnight.  I got to a spot, sat down, took a deep breath and cried my eyes out...

I am uncertain how long I was there.  But the Lord eventually began to clear my mind.  He was there!  Word pictures began flooding my head.  He was speaking.  Directly to me!  Things which I had experienced the month leading up to that night were being replayed over and over in my head. Only this time, He was using them as analogies to show HIS LOVE for me, his daughter.  As I think back over the past 6 years with Caed's SBS, that one night...sitting alone crying out to God at this lake still ranks as one of the worst days of my life.  

I left the park that night still broken.  Still uncertain.  And still scared to death.  However, there was peace...unexplainable.  

Since moving back to Lubbock, we have driven by this park 1000 times.  Yes, there are times I still remember that horrible night as I take a quick glance from the road.  But, it hit me this morning, I had not been back to that literal location since that night in April 2008.  I believe He brought me back at that exact moment....for such a time as this.

Here are the lyrics to the song that "just so happened" to be playing as I unexpectantly found myself at this very special spot today:

Sovereign by Chris Tomlin

Sovereign in the mountain air
Sovereign on the ocean floor
With me in the calm
With me in the storm

Sovereign in my greatest joy
Sovereign in my deepest cry
With me in the dark
With me at the dawn

In your everlasting arms
All the pieces of my life
From beginning to the end
I can trust you

In your never failing love
You work everything for good
God whatever comes my way
I will trust you

Sovereign in the mountain air
Sovereign on the ocean floor
With me in the calm
With me in the storm

Sovereign in my greatest joy
Sovereign in my deepest cry
With me in the dark
With me at the dawn

In your everlasting arms
All the pieces of my life
From beginning to the end
I can trust you

In your never failing love
You work everything for good
God whatever comes my way
I will trust you

God whatever comes my way
I will trust you

All my hopes
All I need
Held in your hands

All my life
All of me
Held in your hands

All my fears
All my dreams
Held in your hands

All my hopes
All I need
Held in your hands

All my life
All of me
Held in your hands

All my fears
All my dreams
Held in your hands

In your everlasting arms
All the pieces of my life
From beginning to the end
I can trust you

In your never failing love
You work everything for good
God whatever comes my way
I will trust you

God whatever comes my way
I will trust you

God whatever comes my way
I will trust you

Oh, yeah....remember the reason WHY I found myself at the park this morning?  I was wasting time while I dropped Caed off?  Yep.  That's right.  As I sat at this particular park contemplating God's sovereign plan and faithfulness in my life and reminiscing dark days in which we wondered if Caed would survive all this....he was jumping and sprinting and working up a really good sweat with the Strength and Conditioning coach at Texas Tech University in Speed and Agility Camp.  

Ironic?

Nope.  Just one more reason God continues to make me smile as He reminds me He's in control!

Exceedingly Abundantly

Since Caed's illness began, I can categorize each year that has followed in 1-2 words.  We have had a mixture of great moments, as well as those that were heart wrenching.  Ephesians 3:20-21 captures Caed's 4th grade year perfectly.

"Now to Him who is able to do EXCEEDINGLY ABUNDANTLY above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever.  Amen."

Being a school teacher, I typically drag boxes and bags home on the last day of school.  I sit them in the garage, walk into the living room....and CRASH!  Some years I am embarrassed to admit those boxes do not get opened until I absolutely have to.....August.  The same goes for my children's backpacks.  This summer started no differently, but to my surprise I began sorting through the dreaded stacks much sooner.  While going through Caed's things, I came across a simple piece of paper that "exceedingly abundantly" knocked my socks off!  It was his yearly Fitness Gram report.  The PE teacher is required by the state each year to do a physical assessment of sorts.  I typically give the report a quick glance and toss it into the next pile.  Physical activity / sports come naturally to Caed, so I was not expecting to find anything alarming on the report.  All of a sudden my eyes became fixed on several numbers at the top of the page!  "This can't be right.  Obviously there has been a mistake!"

The data showed Caed to have GAINED 11 POUNDS and 4 INCHES from May 2013 - May 2014!

This particular area is probably the main source of concern when I think of Caed having SBS.  Will his body continue to absorb nutrients the best it can?  Will he physically look similar to other boys his age the older he gets?

I honestly have no idea if these numbers are as good as they appear.  Is he right where he should be on the growth chart?  We pray so!!  ...and will soon find out next month when we travel to NE to have a check-up.  But to this Mom's untrained eye, it looks AMAZING!  Weight / height increase equates his body is absorbing.  I will add... he is absorbing ALL his nutrition orally.  Although it is always the goal, it is not always achieved.  Most sbs'ers either continue on TPN,  feeding tubes, or both the rest of their lives.  So with that in mind, YES!  An 11 lb/4 in. gain (100% orally) is a huge praise!

Not only did Caed GROW physically, he also achieved PERFECT attendance for the school year!  I am a teacher.  I know how hard it is even for a "normal, healthy" child to be at school every single day of the school year.  Things come up.  Kids get sick.  However, for a child with a chronic condition such as Short Gut, this was HUGE!  He also passed all 3 STAAR Tests (Texas state mandated tests).  Academics do not come easily for Caed.  He struggles.  Yet, he fought hard this year.

This post is NOT a platform to praise Caed.  We believe 100% that once again God's mercy and grace are what allowed him to have such an unforgettable school year.  For whatever reason(s), God chose to exceedingly abundantly BLESS Caed this year, in all areas.  The scare we experienced back in Feb. with the ambulance....thus far, has not turned into anything of major concern.  THANK YOU LORD!

As this verse so eloquently says.....It is YOU God.  It's all about YOU!  We praise YOU.  We proclaim YOUR power that is at work in us.  It's not of our own strength or will.  YOU are able to do exceedingly abundantly MORE than our feeble minds could possibly think or even ask.  To YOU be glorified through it all....the good days, as well as the "bad" for all generations to come, forever and ever.  Let it be!

Another Lesson Learned

This updated post is long overdue; however, you can always rest assured no news typically means good news.  The 6 weeks since Caed's unexpected ambulance ride has been back to normal.  He has not experienced anymore severe pain spells and has carried on as though the episode never even happened.  Todd and I have felt this past month we were in a catch 22 in regards to pursuing further testing.  Any kind of testing is tough, but particularly more invasive ones like upper/lower GI.  If we follow through with the testing and FIND the culprit...GREAT!!!  But if not, we have exposed him to even more radiation and possible damage that was all for nothing.  Our prayer has and continues to be...Lord, lead us!  Help us not make decisions out of fear, but rather full clarity from YOU.  Thus far, Caed has been completely fine.  We will continue to closely watch for warning signs of future episodes.

The main change we have been diligent in has been the forcing of even more hydration.  I cannot thank Caed's teachers enough!  Despite each of them having almost 70 students to deal with on a daily basis AND doing so under the intense pressure of the state mandated tests....they have also kept Caed's physical well-being at the front of their minds.  They are my eyes during the school day and continually "remind" Caed to DRINK, DRINK, DRINK!  They will never know how much I LOVE and APPRECIATE them for all they have done for my son this year.

Even though Caed's latest "issue" has seemingly disappeared, I promise you it's always in the back of my mind.  I cannot erase that hour of terror so easily, and yes...I do worry if/when it happens again.  Yesterday was one of those days.

Caed was graciously chosen to play on the 3rd/4th grade boys All-Star Basketball Team.  He has gained more confidence in this sport this season, and it has truly become a love for him.  The tournament was this weekend, and the boys ended up playing 4 games yesterday alone.  Everything was fine until our lunch break.  Caed told me he wasn't feeling well and did not want to eat.  (ok, stop right there!  Caed ALWAYS feels like eating.  That was the first sign.)  He did what he knows to do in times like that and headed straight for the restroom.  However, nothing changed.  As the boys waited for game #3 to begin, he sat on the bench pale and frail.  I tried to give him something to eat (he wouldn't take it) and also kept reminding him to drink.  My heart told me to tell his coach about the past hour and how Caed was feeling.  But my gut said no.  Caed is getting to the age in which he can and must learn for himself when to speak out about his physical needs.  I believe he knows now what he can handle and push through and what he cannot.  I took my usual spot standing court side to take pictures, yet I also kept my eye closely fixed on Caed.  Several times before and during the game, I noticed his coach look at him and ask if he was ok.  It was obvious, even to someone completely unaware of what the previous hour entailed.  Caed continued to nod his head yes.  My heart was bursting because I KNEW he wasn't.  Finally, at one point during the game, Caed tapped his head (giving the sign to his coach he needed to come out).  I almost lost it there, only because I know Caed.  He doesn't want to come out of a game of any sport for any reason.  The mother in me wanted to RUN to him.  To help him.  To ease any and all discomfort he was having.   Yet I also knew this was his moment.  It was a moment that odds are will happen again and again and again during his lifetime.  I never took my eyes off of Caed as he sat on the bench.  I had seen that look so many times before.  It is a look of my son being so brave and so strong under conditions that are so very tough.  To see him like that,  forcing myself to keep my feet cemented right where they were and allow him to suffer alone, was torturous.  Please don't misunderstand me.  Caed was not in excruciating PAIN.  He was simply having GI discomfort.  Something he tolerates OFTEN, and something I knew I could not do anything about.

As the game continued on, I found myself watching the 10 little boys still playing their hearts out on the court.  Grief began to inch its way in my heart again.  Oh, how I wished my son was just like them.  I literally began to picture the other boys' muscles and bones and organs.  My heart silently cried out to God, "WHY?  Why Caed?"  And yet in the very same breath...my heart was flooded with gratitude.  I began to scroll through the pictures on my camera that were shot just hours before, and tears began to fall.  THANK YOU GOD!  Thank you for sparing his life.  Thank you Lord for healing his body in such an INCREDIBLE way in which he can jump as high as the sky...and run like the wind.  There has been purpose in all the pain.  You chose Caed for such a time as this.  The calling on his life is no greater than that of any other little boy in that gym, yet...his calling right now in his young life is just uniquely different.  Use this time God!  Right now.  As his weak little body suffers there on the bench, with only myself and his grandparents fully aware of what is going on....use it.  Make him stronger.  For I know there will be many days ahead just like this one today.  Lord, make US stronger.  Help Todd and I to learn when to intervene and when to let Caed deal with his condition on his own.

"The LORD is my strength and my shield;  my heart trusts in him, and I am helped.  My heart LEAPS for JOY and I will give thanks to him in song."  Psalm 28:7

My Broken Hallelujah

Chronic - continuing or occurring again and again for a long time.

Caed's "healing" from his 2008 volvulus has been nothing short of miraculous.  To have seen where he was to where he is today is indescribable.  We can never thank God enough for having mercy on our son.

However, there are days like yesterday in which I fall to my knees crying out asking "Why?  Why can Caed's illness story not have a final chapter?  Why do we seem to jump from one issue to the next....year after year after year?"

Yesterday was like any normal Friday.  I had just gotten out to the playground with my 2nd graders when I received a call from the office informing me Caed was with the nurse and he wanted me.  That in itself was uncharacteristic.  Caed hasn't seen the school nurse in a very long time (year or more).  As I walked in, I saw him lying on the cot wincing in pain.  He was restless.  Crying, asking me to make it stop.  I immediately went down the routine list of normal pain questions: "What did you eat?  Have you gone to the restroom?"  He continued to shake his head with tears streaming down his face.  He pointed to where the pain was....lower chest, near sternum.  THAT was different.  It was not the usual intestinal pain spots.  I honestly had NO idea what to do.  I just knew he couldn't stay there.  The pain was too strong, and it was not lessening.  As we walked out the school door, I called Todd to meet us at the ER.  Caed was in the backseat screaming out.  As I looked in the rearview mirror, I knew it was serious.  Caed looked as though he was going into shock.  His eyes were glazing over, his skin was white as snow.  These pain spells would come about every 30 seconds, and he kept saying he couldn't breathe.  I turned my hazard lights on, put my foot on the gas, but my gut told me I couldn't do it alone.  He was screaming too hard.  I have never been THIS scared!  March 1, 2008 was bad, but I did not know it was going to end in emergency exploratory surgery with a slim chance of him surviving. This time I had too much experience.  Caed was so scared he even asked me through his screams, "Am I going to die?"  I saw the Idalou EMS building and knew we were desperate.  Given Caed's history....I just couldn't take the chance.  I would never have forgiven myself....

They loaded him into the ambulance, started an IV,  and gave him heavy dose of pain med.  Within seconds, he became very calm.  Once we got to the ER, frustrations began to set in.  It's always so difficult to fill drs/nurses in on a long medical history.  Although they were able to pull up his past ((volumes)), they still do not know Caed.  Todd and I knew this particular pain was different than anything he had ever experienced.  The X-ray/labs came back good.  Small elevation in liver enzymes, but nothing to cause a serious concern.  Because Caed had been given a big gun pain medication, he was not hurting anymore.  Therefore...ER felt it was ok to send him home.  Don't get me wrong...we were MORE than happy to leave that place.  Been there.  Done that.  ...more in the last 6 years than I care to mention.  It was more the fact that the pain was never diagnosed.  I was there.  I witnessed one of the scariest moments with Caed in a very long time.  It was SOMETHING!  But what...?  The ER docs gave a few possibilities.  We just do not know for sure at this point.

Our local GI discovered a hiatal hernia back in 2012 when Caed was experiencing such awful pain spells (further tests in NE revealed a bad gallbladder).  Once that was removed, pain stopped; therefore we didn't find it necessary to treat hernia (since it wasn't bothering him). Is this the reason for yesterday's episode?  We don't know.  Our next step is to talk further with NE and honestly just sit and wait.  Maybe it was an isolated incident.  We certainly PRAY so!  However, after everything Caed has experienced the last 6 years, you just never know.

Holding Caed's hand in the ambulance yesterday brought up so many emotions.  One being...fear.  ENORMOUS FEAR!  I am not an over-reactive mom.  Probably 180 degrees opposite.  Quite certain due to all that Caed has been through.  Normal kid injuries and illnesses don't phase me.  My own children have to be really really sick before I call the pediatrician.  I simply do not panic.  Even with all of Caed's issues/procedures/surgeries.  God gave me some pretty amazing "heavenly anesthesia" 6 years ago, and traces of it still surface with each new episode.  Yesterday was different.  I can't explain it.  It was real, and I knew the level of pain he was experiencing was extremely HIGH.  Caed is a tough kid.  REALLY tough.  It takes a lot for him to even shed a tear.  Therefore that is the reason for my unsettled heart.

Caed has a chronic condition.  One that will last the entirety of his life.  There will be seasons of "normalcy" / no issues....as well as ones that bring us to our knees begging for mercy.

These are the lyrics to a popular Christian song by The Afters, called "Broken Hallelujah."  They are very fitting for what my heart has been feeling the past 24 hrs.  We are SO grateful Caed is home.  He feels good.  All is seemingly back to normal.  Yet, my gut tells me there is an underlying issue that may surface again...and again.  What is it?  Can it be fixed or treated easily?  We have been down this road so many times before, and I simply have to continue telling myself...."He's still here.  He still has Caed in His grips, holding him close to His heart.....TRUST HIM, AGAIN!"

I try to find the words to pray.  
I don't always know what to say, 
But You're the one that can hear my heart.  
Even though I don't know what Your plan is, 
I know You're making beauty from these ashes.

I've seen joy and I've seen pain.
On my knees, I call your name.
Here's my broken hallelujah.

With nothing left to hold onto, 
I raise these empty hands to You.
Here's my broken hallelujah.

You know the things that have brought me here.
You know the story of every tear.
'Cause You've been here from the very start...

A Drinking Problem

Over the past 18 months, God has BLESSED Caed with great health!  We have not dealt with any major issues (only normal SBS ones).  I sit back some days and find myself just staring at him.  In absolute awe!  Not in Caed.  But in God's undeserving mercy.  In His Healing Power.  It's REAL!!!  And we have not forgotten just how far He has brought us....

This past weekend we were at my parents' house.  The kids were playing the Wii in the living room.  A place in which Caed spent many months on the couch (prior to going to Nebraska in 2008).  I had a flash back moment.  I could see him.  Age 5.  Puffy yellow cheeks.  Hooked to machines.  Sad.  Frail.  The same room.  The same child.  Only differences were new carpet, fresh paint,....and the MIRACLE that transformed my son.

There are no words for that.  To have lived it.  To have been in such a deep dark pit for so long.  To now seeing those everyday "normal" moments that we all experience (and take for granted) in our children.

However, the last 3 months we have been reminded that Caed does indeed have a chronic lifelong condition.  It's easy somedays to forget.  To get wrapped up in the hustle and bustle of life.  But, over Thanksgiving we began seeing some things in Caed that we couldn't put our finger on.  Nevertheless we knew "something" wasn't right.  It was in my gut.  I knew we were seeing moments in him that just weren't Caed.  They were not the usual issues.  They were not intestinal.  There was no pain involved.  It was psychological/neurological.  I'm NO doctor (although I'd give most nurses a run for her money now), but I knew it was something going on in his brain.  His actions and behaviors were so out of character for Caed.  Things got so bad, even Reagan began asking us "what is wrong with him?"

Finally, I talked with Nebraska.  We had no idea if this new "issue" was even short gut related, but I just couldn't sit back and continue to watch my fun-loving son....disappear.  We got our answer.  They said it sounded like he was suffering from intermittent bouts of D-lactic acidosis.   A condition (common with short gut patients) in which they lose sodium bicarb in their stool so much that it drops their levels to a point they become acidotic.  Symptoms include - extreme irritability, loss of focus, lethargic, etc...  Translation: NOT FUN TO BE AROUND!  For me, it was more than that.  To know something was going on (psychologically) that he had no control over.  To see him "lose his mind" was awful.  It broke my heart.  (as well as once again test my unconditional love and patience)  During those episodes, I felt bitterness inching its way into my heart again.  Will there always be some sort of battle he has to face?  I KNOW we are blessed!  I know Caed is an exception to so many SBS kids.  He truly is living as normally as any other 10 yr. old boy.  However, it's in these times, we are reminded that even though outwardly that may be the case....inside his little body, he clearly is not normal.

The good news to all this:  it's an EASY FIX!  Caed needs to simply stay hydrated.  (last week's lab results indicated he indeed is on the dry side)  This is nothing new for him.  He has been drinking an oral rehydration salt mixture since 2009.  However, I feel I have really dropped the ball this school year.  Particularly this winter.  Because Caed has been doing SO well, forcing him to drink his drink everyday has gradually over time become less of a priority.  100% unintentional.  Now we see where we failed miserably.  Definitely a lesson learned.  Hydration will always be very important for Caed, regardless how "well" he seems on the outside.

We finally have a diagnosis, as well as a solution. The next step is making a 10 year old boy understand the importance of obeying dr.'s orders.  We hear on a daily basis..."It's not fair!"  We continually have to give him the speech that because of his lack of intestines, his body does not work like everybody else's.  There are things that he will have to do (or not do!) the rest of his life to compensate for it.  Todd tried to explain to him today that not all short gut kids are doing as well as he is.  Some still have a central line and feeding tube, and take daily medications.  What he has to do is EASY!!!
(again...we are dealing with a pre-adolescent.  NOTHING makes sense to them!)  Just in the past week,  with forcing more fluids....we can see a dramatic change in him!  A HUGE DIFFERENCE!  If we let him go too long or he doesn't get enough fluid....watch out.  The HULK emerges.  Everyone RUN for your lives!

This is a very minor prayer request, yet fighting any battle (great or small) can be exhausting.  Please pray Caed can truly see the importance in this....and we can get a better handle on his "drinking problem."  ;)

That's Just Life

Clean slates.  Fresh starts.  New beginnings.  I love them.  Whether changing the calendar each month, opening up a new ream of notebook paper, or wearing a pair of shoes for the first time.  There's just something about the word 'new' that excites us all.  Therefore scrolling through social media the last 24 hrs and seeing post after post with the words "expecting the best, the best is yet to come, excited for what 2014 has in store...." was in no way surprising.  I too am looking forward and anticipating what this coming year will bring for our family.  And I DO believe the best is yet to come!

However, in my 40+ years on this earth....I have also learned a thing or two about life.  I have heard that the most fertile soil is usually found underneath ash.  Fire is a good decomposer which can break down the soil and renew its nutrients.  Good amounts of nutrients will produce optimal growth and beauty in plants.  Anyone see the parallel I'm getting at?  The "best in life" is like the fertile soil.  Yet, fertile soil is most found after some kind of disaster.

Just this morning, I was still in bed (trying to wake up) and heard a very precious conversation between my 2 boys.  What started with a simple question from a 5 yr old to his older (much wiser) brother regarding the extinction of dinosaurs....led eventually to this:  "Caed, but why do bad things happen?"  Gulp.  We honestly could have stopped right there.  I held my breath wondering how on earth he would answer this question that has plagued mankind forever.  Caed replied without hesitation.  "That's just life....and if no one ever died, then how could we go to heaven?"  Such a simple childlike answer.  And yet, as I have thought back over those words today, 3 of them have hit me to the core.

That's just life.

Yes, Caed understands that, and I am grateful that the Lord has allowed him to learn it at such a young age.  Most kids have not experienced the hardships he has in his short 10 years of life.  Most of us do not taste pain, fear, trauma, and loss until we are grown adults.

The Bible states over and over, "...WHEN you face trials of many kinds..."  That's just life here on earth.  We WILL suffer.  Disaster WILL come.  Great PAIN will be experienced.  No one is exempt.

So on this first day of a brand new year, why am I posting 'doom and gloom', you ask?  I simply needed the reminder myself today.  It's life.  I know without a doubt this new year will bring moments of great joy to our hearts that we could never fathom.  The Lord will choose to bless in ways that none of us deserve.  I am confident in that.  Yet, I also know the storms will roll in during 2014 and bring hard times.  Days in which our "faith" will be tested.  Do we really believe what we claim to during those days of ease?  Those storms come in our lives for MANY purposes.  One would be the testing of our faith.  Another would be the renewing of nutrients to the "soil." Purification during fire.

Just as this famous quote in the picture states,  I believe it's a perfect motto to be reminded of at the start of a new year.  First and foremost, "Expect the BEST!"  Be joyful, with your heart overflowing in gratitude of the upcoming BLESSINGS God is planning to pour out on you and your family this year.  They will be like nothing we've seen before.  Don't miss them.  Be purposeful in looking for them.  Most of which come disguised.  Those are the coolest.

But we also need to "Prepare for the WORST."  This does not mean we walk around all day in fear of what might go wrong.  We do not need to take on a pessimistic attitude and drain everyone we come in contact with.  For me, preparing for the worst simply means "do not take things for granted."  It is knowing that I will be called on again to walk down a road that brings great pain.  It is reminding myself we are not promised tomorrow.  Just as Caed so simply stated this morning, "it's just life."  As long as we are still living and breathing on this earth, suffering will be apart of it.

Now...the best for last:  "CAPITALIZE on what comes!"  Regardless.  Not IF it ends the way you want.  It is being fully aware that God has a wonderful plan for His children.  Those "bad things" do not occur in vain.  There is purpose in everything under the sun.  Don't just know it.  BELIEVE IT!  Take it to heart.  Live it.  When you do, the most amazing (mind blowing) things will come out of those situations.  I'm not saying it is easy.  When you are staring "the worst" in the face, it is....... (I honestly can't find the word.  Unexplainable.)   Yet, the key is clinging relentlessly to the Almighty.  In doing so, blessing upon blessing will be showered.  Redemption will be seen.  His glory will be revealed.  And beauty indeed will be seen RISING from the ashes.  Unfathomable blessings are missed time and time again when we fail to see the good...amongst the "bad."  It is so much more than just turning lemons into lemonade.  To truly "capitalize on what comes" isn't about us.  It isn't about what WE do,  our efforts, or our ingenuity.  It is choosing to see the outcomes from a heavenly perspective.  It is trusting God in all things.  Believing HE has a greater plan.  It is only then that we can "consider it pure joy" as the Bible commands in James 1:2-4, WHEN we face various trials.

So as we celebrate this new year, my prayer is that we walk into it with the proper perspective.  Do not be naive.  Do not let all the pomp and circumstance of fireworks, resolutions, and the ball dropping cloud your sight.  I promise you...2 days from now you'll be sorely disappointed and feel cheated out of life.  Rather be armed.  Be prepared.  Be ready for the storms.  Walk into this new year literally one day at a time.  Despite the events of your day, always count your blessings at the end of it.  They are as numerous as the stars....  How then could 2014 NOT be the best yet?

Thank you Lord for the days you already have laid out before us.  Help us to trust YOU when we do not understand.  Remind us of your plan to prosper us, to give us hope and a future.  We are in awe that you love us like you do.  Help us to take each day....each moment you bless us with as a GIFT!  Then be our fortress when the winds begin to blow and the fire rages around us.  We know during those times especially you are conforming us to the image of your son, and stunning beauty will indeed rise...