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...