New Year. New Mercies Promised.

Boy, it's certainly been awhile.....

On one hand that is always a GOOD sign when you don't see a daily update from Curious About Caed, however, I am aware of those who have faithfully followed our journey and may be thousands of miles away....who quite honestly, have been "curious" about Caed.

First off, I will say he is doing wonderful!  We are as "normal" as we've ever been since D-Day, March 1, 2008.  For the first time, there are no tubes, lines, feeds, machines, medications, or medical supplies (nor a CLOSET to keep them organized).  We simply have a boy......with many beautiful scars.

I'm rather embarrassed to admit this, but JUST LAST WEEK, Todd initiated the dreaded "clean out."  (not embarrassed by Todd, but rather that I had not done it prior to NOW!)  It wasn't anything new.  We had done it many times before.  Going through all of Caed's medical supplies and throwing out the things not needed anymore.  It was always such a bitter/sweet time.  Thrilled beyond words that you weren't needing those awful things, and yet......SUCH pain always surfaced for me seeing, touching, smelling, remembering. It was no different last week.  Todd was focused.  Ready to get to work on the piles and the full cabinets.  And most likely impatient with me because I was paralyzed.  He had thrown this "cleaning out" idea on me rather abruptly.  I wasn't ready.  I couldn't go back.....not just yet.  I knew, Lord willing, the feeding tube supplies would hopefully be GONE from our house FOREVER.  And yet, I sat staring at the pile.  I paced back and forth nervously knowing I had to "go back to that dark place once again, " but.....wasn't ready.  I turned then to see all the wound care / incision supplies from this past year.  Everywhere I looked it was as though they were screaming at me.  Awful flashes spinning wildly in my head.  They would surface for a moment only to fly away for another one to take its place.  Most of the "cleaning out process" was quite a blur.  We chose to hang-on to a few things as keep sakes (arg!!!....tough on Mommy's sensitive heart), but mostly got rid of the bulk.

It's just part of it.  I'm STILL learning.  I'm still learning that it's ok to grieve the many things I have lost the past 4 1/2 years.  Yes, I finally said it.  Me.  This blog has been Caed's story, yet told through a hurting mother's eyes.  I know that it is HE....that sweet little boy who has truly LOST so much during 1/2 of his life.  But, I'm also accepting and learning to deal with some of my own too.  And that it is ok to still shed tears every now and then for the many things I too....lost.

I had this exact conversation just today with a dear friend also grieving.  We shared how guilt plays an ugly role in the process.  As you cry out to God.....satan whispers...."Dry it up!  Aren't you grateful for ______, ______, and _____?  Stop your whining!  Others have it much worse!!!!"  Once again, I'm still learning on this one, but am trying to acknowledge that YES! I have been blessed.  YES!  I have MUCH to be thankful for.  YES!  Others indeed have lost MUCH MORE than I could ever imagine.  And yet, I also know God tells me to cast my burdens on HIM because HE LOVES ME and is collecting every tear I shed.

It's just a process.  Plain and simple.  There will be things that trigger particular memories of this difficult time in Caed's life probably..... for the rest of mine.  That's not necessarily a bad thing I've come to realize....just hard. 

The same FAITHFUL God of all our yesterdays......will extend His NEW MERCIES on all our tomorrows!

Just doesn't get better than that!!!!!
Happy New Year..........we will be anxiously awaiting to see His Hand at work....on the good days AND bad.

A Cheerful Heart is Good Medicine

          (the kids giving gifts to a Child Life volunteer at Covenant Children's)

Last month Caed and Reagan had a joint birthday swimming party.  It was the first time we had ever combined both of their parties together.  (about 40 days separates their birthdays)  We had decided to try something a bit different this year, and I truly think we may have stumbled upon a wonderful new tradition.

We asked their friends to bring a new unwrapped toy for either a girl or boy, any age.  The response was overwhelming.  Later, Caed and Reagan (and Caleb) would deliver these toys to Covenant Children's Hospital here in Lubbock.  There is a very special group called Child Life that go above and beyond helping kids who have found themselves hospitalized.

I vividly remember the day back in March 2008 when I first heard of (and met) a Child Life Specialist.  It had not even been 24 hours yet since initial life-saving surgery, and we were in PICU.  I remember over-hearing the Pediatric Intensive Care Doctor telling the nurse...."get Child Life down here NOW!"  I had no clue what she was referring to, and to be honest it frightened me to the core.  About an hour later, two precious women appeared in Caed's room with their arms full.  The main two items I will never forget them handing us were a green football robe and some matching house shoes.  Several weeks later as we attempted to get Caed "up and moving, " those were incredibly handy.  When we came to the hospital, he was wearing a t-shirt, sweat pants, and tennis shoes.  He had nothing else! 

The endless supply of toys (personally chosen just to fit Caed's interests), special guest visitors, crafts, story times, etc.....provided by Child Life, number the stars.  Not only was he blessed by some very sweet staffers and volunteers here at Covenant, but also a tremendous C Life team in Nebraska.  Even to this day, I can walk into Caed and Caleb's room and see "something" that sends chills down my spine.  Caleb is now at the age Caed was when it first happened.  He wears that little green football robe around the house occasionally, and honestly.....I don't like it.  Not one bit.  Caed sleeps with a plethora of animals each night....at least 3-4 that are Child Life gifts from the past 4 years.  I love them.....and I hate them.  Each one reminds me specifically of the time, place, and situation he was in.  They brought tremendous JOY.....but during very dark days.  Probably the toughest one is Fluffy.  A Build-a-Bear that was given to Caed by C Life those first 24 hrs.  Fluffy has stayed with Caed ever since....even now.

I hope I am not sounding contradictory.  Child Life and ALL they have done and given Caed were life-changing.  I honestly could not imagine going through one ounce of all this without them!  Yes, they are THAT special.  It's just seeing those particular toys, animals, clothes, NOW.....that are hard because they conjure up such deep painful memories.

Until you are a parent of a very sick, hurting hospitalized child, do you understand and appreciate ALL that Child Life does!!  They help to ease the anxiety that builds up day after day and simply attempt to bring a ray of "normalcy" into the rooms of these hurting children.  The best way I can describe what they do is to just say their name.......Child Life.  For Caed, they helped bring the life of a child into a place that is far far opposite.

I was reminded and overwhelmed this past year with all of Caed's surgeries.  It's not reserved for just the big admissions, but rather ANY admission.  Major or minor.  In my opinion, they are truly unsung heroes of the pediatric floors of most any hospital. 

When I called last week to schedule a time for us to drop off all the toys, I spoke with the head specialist.  I ((briefly)) shared Caed's story and how we wanted to give back after being abundantly blessed in the past.  She stopped....let out a gasp....and said, "I remember Caed!"  It was a touching moment for me and I am so thankful for this precious woman and all on her team.

My prayer is two-fold.  First, that God would use these simple toys to aid in the healing process of many children.  Whether it be physical or emotional.  BOTH vitally important!  Secondly, I pray for my own kids.  That this would be something they would not forget.  I want them to learn the JOY of giving, and particularly to those less fortunate.  In this setting, it would be less fortunate in health.  I pray for Caed especially to remember......  To remember what it's like living in a place that is not your home.  Not having friends to play with or ANY ounce of normalcy surrounding you.  Only hurt, pain, fear, confusion, grief, and sadness, but the joy and laughter that was brought with a simple gift from a stranger.

I overheard Caed and Caleb having a heart-to-heart the night of the birthday party.  As they sat in the garage looking at ALL the wonderful gifts (that they couldn't touch), Caleb began whining saying "it's not fair..."  I talked to him for awhile, but realized quickly I was beating my head against the wall on this one.  I stepped away, but then overheard Caed trying his turn at explaining to sad little brother.  I wanted so badly to grab my video camera.  To record the words coming out of Caed's mouth, but was frozen as to not miss a word.  Tears streamed down my cheeks.  To hear Caed explaining in his own words what it was like being in the hospital....having surgeries.....experiencing the pain......was incredible.  He talked about how these toys would help cheer up the kids laying in the hospital beds.  He went on and on.  In depth.  It was one of the first times I had ever heard Caed verbalize "his story."  Caleb sat starring at his big brother.  Hanging on every word.  I have no idea how much Caleb understood, but one thing is for sure.  Caed and I could have said the exact same thing, but because it came from CAED......the one who truly knew.....the one who could 100% empathize.....it made all the difference.  I never heard another complaint from Caleb.

My desire is to make this our new birthday tradition.  And one that will only multiply in blessing.....

Age 9

It's official.  Caed has turned 9. That in and of itself may not seem like any kind of milestone, but for me....I remember vividly a conversation with Dr. G during the first few weeks of Caed's volvulus.  She said, "...be prepared.  Caed may need a feeding tube at least til age 8-9."  Now, at this time, remember he was age 4.  Age 9 seemed LIGHT YEARS away.  (I'm picturing Caleb right now feeling the same way).  5 YEARS?  What in the world are you saying?  Won't all this go away and be fixed at least in a couple more days or weeks? 

She talked with us daily, it seemed, about how TIME would be an enormous factor in Caed's healing.  To rehabilitate his bowel and "retrain" it to work again would not happen overnight.  They talked about the bowel being one of the most sensitive organs in the human body.  You mess with it....and it's ((tough)) to simply bounce back.  You take out 90% of it, and you have a LONG road ahead of you.  Most patients would have needed a bowel transplant, which is what they thought would ultimately be done for Caed too.

But God......

....had another plan.

Caed had a checkup this past week to look at his incision.  Dr. G was pleased to see it continuing to HEAL!  She doesn't want to see him again for 6 months!  YEA!  This past year was such an unusual ordeal.  One that nobody (doctors) fully understood.  But, finally.....it seems our last surgery did the trick.  We THANK GOD for closure....literally!  We also thank GOD for all the medical staff that has played a role in Caed getting where he is today. There is quite a long list, but we believe they each one have played a special (very important) role.  This is the woman who was with Caed from day 1.  She initially removed all the dead bowel the early morning hours of March 2.  And now look at them!  Who would have thought?

(more details to come regarding Caed's birthday party)

Fall Ball

Baseball continues.... Caed is playing fall ball for the first time, and is really loving it. This is his first attempt at the "real deal"......kid-pitch. His team is doing great and getting lots of experience.


My recovery is also coming along nicely. To hear the words..."Your incision is healing up great!" is something we're not quite used to. I snickered when my doc said it. Don't think he fully could appreciate the irony. For the past 11 months, we heard the opposite over and over again. Certainly don't take closing wounds for granted anymore.


 Trying to enjoy these last 2 1/2 weeks of summer......it's been WONDERFUL(ly) normal!

Aftershock

Our earthquake occurred in 2008. A minor "aftershock" was felt just this week. Due to these two events that took place over 4 years ago, I finally had to go under the knife myself on Wednesday.

Caed experienced his volvulus 2 1/2 weeks after I gave birth to Caleb. My 3rd c-section. I was forced to "recover" REAL QUICK! Gone were the days of taking it easy. I vividly remember being woken up by the hospital security guards because (heaven forbid) I had fallen asleep on a bench just inside the entrance to the Children's Hospital. A bench. A hard metal bench. Yes, just 3 weeks after having major abdominal surgery myself.  I remember feeling a bit "homeless" after they woke me and forced me to move, but it didn't matter.  I wasn't going to "leave the premises."  Instead I would just go find another vacant corner, chair, or yes, even BENCH to sleep on while my son lay in ICU. 

 But, what else was I supposed to do? "Take it easy!", right?? WRONG! There is not a mother alive that would have parked herself in her EZ Boy recliner (to recover) all the while her child was fighting for his life. The days turned into weeks. The weeks turned into months. And the months turned into years. It was simple.   I delivered Caleb via c-section in Feb. 2008 and did not see a doctor or go back for a checkup until  18 mos. later....  My "recovery" just wasn't priority compared to what Caed was dealing with.

 I still believe that with all my heart today. However...because of those events, I developed an umbilical hernia soon after. Once again, though, who in the world had time to deal with her OWN medical issues? Clearly not me!

That is until earlier this summer when my doctor confirmed that yes I indeed did have this hernia, and "oh by the way....have you ever heard of a VOLVULUS?!?" Apparently hernias gone untreated for a length of time, ((could)) result in a volvulus. Wow. I calmly shared Caed's story as my doctor's eyes bulged and mouth dropped. "So your son should have died that night, huh?" Once again....not always the response I enjoy hearing from medical professionals (unrelated to Caed). But, nevertheless, always a good reminder of God's amazing mercy.  My doc didn't have to talk me into the hernia repair.  An appt. was made immediately (within minutes) with a surgeon.  His "volvulus scare" did just that!!

So, this past week ENORMOUS amounts of empathy have been given to my little HERO. Don't get me wrong. I am fine! Painfully sore, yes. But...I'm not even going to pretend to have gone through even a fraction of ANYTHING Caed has these past 4 yrs. Not even close!!

I'm not sure why anyone is even surprised by this surgery?  We are averaging 1 about every 3 months these days...(with a few ER visits sprinkled in between just to keep us on our toes).  I honestly have to laugh.  If I stop for even a moment to contemplate this past year....the past 4, I just might fall apart.

.....thankful for God's faithful compassion.

It has become the glue holding me together.

Difference Maker

This past weekend Todd and I had the privilege of attending Advocare's Success School in Ft. Worth. Over 13,000 were in attendance. It was.....incredible! Advocare is a world class nutrition, health, and wellness company that is helping change lives all over the country. It also is helping fuel high school, collegiate, professional, and Olympic athletes. Todd and I began on products (and became distributors) over a year ago. Not only did we lose weight, but gained more energy and began feeling "healthy" for the first time in a VERY LONG time! The longer we are apart of Advocare, the more passionate we become with this amazing company. The leadership aligns 100% with our core values and we are deeply honored to be associated with them.

Now, what on earth does that have to do with Caed, you ask? Well... Advocare has a Scientific and Medical Advisory Board that uses their (combined 250 yrs) expertise to ensure that all our products are formulated with the highest quality ingredients based on the latest scientific research, as well as SAFE!! I have heard them speak several times. Let's just say....they know their stuff! One of the members of the board is Stanley J. Dudrick, MD. That may not ring a bell with most of you, but if you live in Short Gut world....you know EXACTLY who he is! He pioneered the research and development of TPN (Total Parenteral Nutrition). In other words, he has saved millions of patients (young and old) who are unable to get their nutrition orally. Caed was one of those. He was unable to tolerate ANYTHING by mouth for almost 6 months. The amount of nutrition he was receiving from his feeding tube equaled roughly 1-2 tsp. every hour. Clearly not enough to keep him alive that long. Honestly, I hated TPN at the time. It was a constant reminder that my 4 yr. old was very, very sick. It was administered through his central line....a tube that protruded out from the middle of his little chest. For many months, Caed was hooked up to his TPN 20+ hrs/day. But, gradually, that time began to decrease until 1 day....his need for it to sustain him was finally over!


On Friday night at the Advocare Conference, we had the awesome privilege of getting to meet and THANK the man that God used to inadvertently keep Caed alive all those months. He was kind and gracious and listened to everything we had to say. He did not seem "bothered" by us or in a hurry to move on, but rather wanted to know about Caed and how he was doing. Did he truly know what this meeting had meant to me? Could he see through my nervousness into a heart that was bursting with joy? There are no words.... Absolutely none in the English language that I have found to communicate a Mother's gratitude for someone who has saved her child's life. Dr. Dudrick is not the only one. There are certainly others who GOD has providentially put into Caed's life these last 4 years. But....even with the very BEST pediatric trauma surgeon and specialists, had Caed not received TPN those first 6 months after the volvulus....there is NO doubt, he would not be here today!

Because of the HIGHEST quality ingredients, and the nutrients that are specially formulated for easy absorption, Advocare has now become a MUST for Caed's daily intake. Being short gut means supplementation is a necessity. I know we have thousands of (cheaper)choices, but quality is extremely important to Todd and I. We have personally seen and heard from every doctor and scientist on Advocare's board. (and one of which we feel we already have a previous, personal connection to) There is comfort and excitement knowing Caed is getting the very BEST! He is being pumped daily with Nutrition shakes/bars, CorePlex multivitamins, and probiotics. (Oh yeah....as well as his brother and sister!) Just call us the Advocare Family! We are ALL being fueled by it.

We THANK GOD for bringing Advocare into our lives almost 2 yrs ago!  It truly has changed our family and has provided the extra health and wellness we desperately needed. 


I consider Dr. Dudrick to be a "difference maker."  Although the Lord did not bless me with as high of an intellect as He did Dr. D, and I will never save thousands and thousands of lives through my work.....I am determined.

Determined to also be a difference maker...

Champions

Well, they did it!!! Congratulations Caed and the rest of the Idalou Machine Pitch All-Stars.

A Much Different Summer

Well....we are STILL playing baseball. Caed's team lost by 2 runs in the championship game to become the Tri-County Runner Ups. They did such a great job! Amazingly, Caed was then chosen to be apart of the All-Star team, who are still in tournament play as we speak. So, our summer thus far has been filled with LOTS of baseball....AND swimming! Two things Caed loves most. We are so grateful for the healing that has ((finally)) taken place in his life.

Surreal...

 ....that's the feeling I had 2 days ago as I drove through the streets of Celina.  Reagan was going to Pre-Teen Camp with our former church, so she and I drove the 300 miles on Saturday.  It would be a very quick trip.  Literally in and out.  I dropped her off with our across the street neighbors, visited awhile, and got back on the road.  However, something quite unexpected occurred in those few short minutes.

The new family that bought our home had found a box up in the attic (which they thought was ours....it wasn't.)  It was nice finally being able to put faces with the 100's of signatures we had seen as we went through the selling process.  Such a SWEET family!  We stood outside visiting in the driveway, when the wife unexpectedly asked Reagan if she wanted to come in and see her old bedroom.  They have 3 little boys, so her pink/yellow/green/purple room was altered "just a bit."  ;)  As we walked up the sidewalk to the front door....a very strange....surreal feeling came over me.  I had made that exact walk a million times prior.  Only this time, it wasn't MY HOUSE.  I'm not sure if you have ever had the privilege of doing this, but I will say....it was such a generous offer, but also ((SUPER TOUGH!))  Obviously, you have endless memories attached to every square inch of a former home.    But, this home?  Very hard memories.  The last 2 years we lived there (2008-2010) was Caleb's birth/Caed's volvulus.  And during 1 of those years, Todd was living there alone.  I tried desperately to block out those painful pictures flashing one right after another with each step I took.  It was surreal, and I honestly had to keep reminding myself where I was....and that this was NOT my home anymore.

In our married life, Todd and I have lived in 5 different homes.  Each one just as unique as the stage of life we were living.  To visualize each of those homes, I can also recall thousands of memories associated along with them.  Good AND bad.  But....there is something distinctly different about our house on Doloris Ct.  Absolutely....SO MANY wonderful memories were made there, and friendships that will without a doubt last a lifetime!  But, the trauma.....the overwhelming pain that we were forced to bear those 2 final years unfortunately have left their mark a little deeper in our hearts when we think of our time in Celina.

I am so grateful for that (very rare) opportunity to walk back into "my house"....probably for the last time.  There definitely was a sense of closure this weekend, meeting this wonderful family and being able to visualize their new life on Doloris Ct.  I truly pray for sweet memories and years of tremendous favor and blessing on the 6 lives who call this special house....their new home.

Our Strong & Mighty Healer

3 1/2 years.

 6 trips to Nebraska.

1 Make-A-Wish trip.

3 E.R. visits.

4 more surgeries.

1 less organ. 

Endless x-rays, procedures, medical supplies, shots, blood draws, IV's, medications, and dr. visits.

......have come and gone since these 2 photographs were taken.  I truly am speechless.

"For You came and touched me with Your healing rod.  Your unmerited favors overshadow me.  You are Faithful and True.  Strong and Mighty.  My Healer."

Summer

Baseball is officially winding down.  What a great year!  Even though Caed had to sit out 3/4 of the season, I wouldn't change a thing.  It has truly been a blessing that he has been able to step in like he has and at least finish out the remaining 8-9 games with his teammates.  He is doing WONDERFUL and the incision is still closed!  When you look at him, it's as though this entire year of surgeries never happened.  We are continuing to push supplemental nutrition and eagerly watching the scale inch higher and higher.  It's pretty amazing to remember back to what he was like on Opening Day.  So frail.  Literally skin and bones.  Don't get me wrong.....the boy still needs some meat on him, but he is definitely MUCH stronger.  And happier!

Last June he had signed up for Baseball Camp, but instead was forced to say good-bye to summer, and travel over 900 miles to have an unexpected hospital admission and surgery.  This year....he is BEYOND excited.  Not only will he be able to finally attend that Baseball Camp (with some of his teammates), but also add in Basketball Camp too.  Both are right up his alley.  We also have already been swimming 4-5 times.  I know these things seem so routine.  So normal for summer.  But, for Caed....the last 2 weeks have literally been LONG-AWAITED answered prayers.

As I was putting the boys to bed last night, Caed asked if he could pray first.  I always love to listen to him pray.  He amazes me....the things.....the people.....the other sbs/transplant kids (he has never met) that he always remembers.  It's the little things.  The things I take for granted or quite frankly, don't think of until I hear Caed voice them.

Last night's was simple, yet it caused my heart to sink.

"Dear God.........thank you for finally closing my tummy up....and for letting me play baseball.....and swim....and take baths."

He very quickly moved on to other requests, but I stood there staring at the floor.  YES!  THANK YOU GOD for doing each of those mundane, ordinary, easily taken-for-granted things.   This year was ((tough)).  I still don't understand WHY it all happened the way it did, but am SO INCREDIBLY grateful for the timing in Caed's latest healing. 

Summer.

Here's to many more lazy days at home....with friends....with a glove on our hand.....or goggles on our sun-burned face.

75 minutes

I'm honestly quite speechless.  Not even sure how to start this one......

Tonight was incredible!

Caed's 1st game of the season.  The first time he got to wear the FULL uniform.  The first time his name would be called in the batting lineup.  No more standing on the "sidelines" giving hand signals.  No more sitting in the dugout all alone.

Before the game, Caed mentioned to us how nervous he was.  He was so excited, and yet scared to death he wouldn't hit the ball.  (those who know the ending to this story, may go ahead and chuckle here....)  Adrenaline had set in quickly.  We got a kick watching him warm-up and seeing him sprint the whole time.  To say he was excited is an understatement.  The coaches graciously allowed Caed to be first up at bat.  As he stepped up to the plate, the dugout erupted in full unison....."Let's go Caed!  Let's go Caed!....."  Excitement was in the air.  Everyone (even these little 7-8 yr. old boys) knew how big of a night this was for him.  One teammate even decorated a poster and hung it on the fence to show his support.

The pitches came in and before we knew it, he had 2 strikes.  We sat on the edge of our seats holding our breaths, PRAYING for God to please just let him hit.  Next, he tipped a foul ball.   Finally....there was contact!

Honestly that in itself was good enough for us.  He hit the ball.  All good.  We could go home now.  But, apparently Caed had other plans.  As he ran past first.....and then second....and then THIRD......my heart was about to explode.  Literally a flood gate of tears....uncontrollable sobs...were fixing to be unleashed (and it wasn't going to be pretty).  Then as he crossed home plate and the realization of what he had just done sunk in, I couldn't believe it.  I sat stunned as I watched his entire team explode out of the dugout to congratulate him.

How could this happen?  Did God REALLY just do that?!?!  I wasn't sure at that point whether to laugh or cry thinking of what had just occurred.....and more importantly knowing....it wasn't Caed.  He is 49-50 lbs of skin and bones, endured FOUR abdominal surgeries just this year, hasn't been able to play or practice the entire season..........and he steps up and does THAT?
Definitely a God-thing.

The game continues.  The Pirates dominate, making some great plays.  It's now time for the line up to start over.  Caed steps up to the plate again.  ANOTHER HOME RUN!!!!

Ok.  At this point, the whole (Pirate) crowd is laughing.  TWO HR's?!?!  How in the world???

Finally, there is time for yet another trip to the plate.

Yep....you guessed it.  THREE HOME RUNS in a single game!

Wow.

As he crossed home plate and ran back to the dugout....our eyes met only for a split second.  He was trying so hard to hide his excitement (and play it cool, I guess)...but he gave me a quick little grin and I could see that sparkle in his eye (again).

At this point.....I don't care if Caed strikes out every single time he steps back up to hit.  Sure, it would be heart-breaking for him (for anyone), but tonight was a gift.  An ENORMOUS heavenly gift, and one that will not be taken for granted.  It's not about baseball.  It's not about winning.  It's not even about the triple HR's!  But, rather, knowing where Caed has been....and seeing where he is today.  He is walking, breathing, cleat-wearing, Popsicle-eating, free of ANY and ALL tubes protruding out of his frail, little body.  He is laughing, running, hitting, swimming!  These "normal" things are HUGE for him.   I think back, not over the past 4 years.....but rather just 365 days.  This child has gone through some very dark days and nights.  Hell.  Plain and simple.  I guess that's what makes tonight.....absolutely mind-blowing.  Flashes of the pain.  The screams for help.  The agony trying to walk but only a couple of steps.  The packing of a deep open ab wound day after day.  Wheeling him away from us.  4 times over.  Oh, the pain he has endured.  The frustrations.  The disappointments.  The grief.  This year has been SO incredibly difficult for him.  Much more than anyone knows.

So, for God to do this for Caed tonight.  We are speechless.....

It reminds me how much God loves us, and how much He loves giving good gifts to His children.  Yes, tonight was a true gift.  I don't know how much Caed will remember this when he is older.  When he is all grown helping coach his own son in a game of baseball.  All of it?  Some of it?  None of it....?  I don't think it will matter if ANY of us remember it.

It was about one night.
Just 75 short minutes.
And being reminded that God is clearly not finished with him yet.............

This sign was almost TOO much for Mama to see during the game!  But, I thank sweet Morgan (and his Mom) for their support and compassion. 

Yesterday Caed received yet another wonderful gift.  SWIM TIME!!!!!!!!!!  This was the first.  He has waited so long for this, and finally was given the green light.  We were a little concerned thinking maybe he forgot how!  But, he just jumped right in....never skipped a beat.  He has 2 pretty special friends who have walked this difficult year along side him.  They have been SO sensitive and protective of him at school after each surgery.  I THANK GOD for these two!!!!!!!!

Not Just Any Game

It's hard to believe it's been 3 years.  No, not since the dreadfully unexpected volvulus.  But rather 3 years ago that Caed first started baseball....or should I say T-ball.  He missed the first year he was eligible to play due to that small thing of "fighting for his life" in a hospital bed for 90+ days.  So, the following March, after a year spent living in hospitals......when he finally got to play, it was a monumental day for Caed, as well as our family!

I remember so clearly sitting in the bleachers at his first game thinking......"I know this is a big moment for all you other moms and dads.  I know you are so excited to see your son out there playing.  BUT.....it goes SO BEYOND that for us.  Sure, we've dreamed of this day since Caed was a baby (probably), but you don't understand.  This little boy you see stepping up to the plate should have died last year!  Do you know the trauma and unspeakable suffering he has had to endure this past year?  It's unimaginable.  Do you know what lies underneath that bright orange Celina uniform?  A feeding tube.  This is not just any baseball game, you see.  Number 10 is a living, breathing.....miracle."

I have found myself transported back to that day.  My heart literally feels as though it might burst.  In 4 short days, Caed will be stepping back up to the plate (for the first time).  He has been through so much this past year, and has been forced to "sit and watch" his friends run and play and slide and climb and swim and hit and catch.  But not for long.

This weekend, Todd began practicing quite a bit with Caed.  He is definitely "out of shape."  (and I mean that literally.  He lost a lot of muscle after the last surgery)  Caed's form is there.  The power behind it....not as much.

Yesterday, Caed came to me asking if he could wear his cleats when he and his Dad went out to practice.  (Sure!!!)  Then, a little later, he came asking if it would be ok if he wore his uniform.  (You bet!!!)  He explained to me that he would probably be able to move better and faster with it on. ;)

At this point, I really wanted to cry!  To see him so excited to put on his uniform....not just the shirt, but his cap and pants and socks and belt.  The whole 9 yards.  And to know we didn't have a game to go to.  He was simply wanting to go out and practice with his Dad.  It meant everything to him.  The freedom.  The liberation.  The confidence.  The joy.  He was finally getting to "be normal like the rest of his friends."

Friday is a big day for Caed.  No, it's HUGE!  And although for most moms and dads sitting there rooting for their favorite little player, it may seem like any normal Little League game......

......there will be a miracle stepping up to the plate once again.  The number on the back of his jersey may have changed, but it's him.  He may knock it out of the park, or he might even strike out.  Either way, it doesn't matter.  Because of God's great love and mercy and (perfectly timely) Healing Hands, my little boy will finally get to do something.....seemingly very small and insignificant, that means more to him than any of us can truly comprehend.   

Thank you Lord for the life lessons You are teaching him at every step along this journey....even at such a young age.  I pray You continue molding Caed and getting him ready for the great work You have in store for him in the future.

365

That's roughly the number of days Caed's latest issue has lasted.  I remember this time last year him coming to my classroom several times a week (and then even a day) complaining of his tummy hurting.  Something was clearly wrong, but what?

June 2011 comes in at a close 2nd to the most awful memories of the past 4 years.  We didn't know it at the time, but he was experiencing severe gallbladder attacks....which then ultimately led to the removal of it later that month in Nebraska.

Last summer was tough.  (for many reasons)  But, for this little boy, it was filled with enormous physical pain, and then the emotional grief soon followed.  Caed was not allowed to do much of anything.  First and foremost, SWIM.  A summer just isn't a summer without endless afternoons spent in the pool.  Even a family trip planned to a big Texas water park had to be canceled.  He sat poolside more times than I care to count watching everyone else have all the fun.  It was a very difficult balance which had to be mastered daily.  To say no to all water....all pool time....was unfair to my other 2 children.  However, forcing Caed to sit and watch...at the age of 8, was likewise tremendously unfair.

This school year then brought not 1.....not 2....but 3 surgeries. All wound revisions for the initial gallbladder removal.  Now, here we are.  Sitting 5 weeks out from the latest......

Waking my kids up for school is progressively getting harder and harder as the year is coming to an end.  Caed particularly.  But today was different.  As I was trying to get him up, I said, "Remember we get to go see  Dr. G today!  Maybe she'll release you for swimming....."  Immediately a big smile came over his face (eyes still closed however).  And then he whispered, "....and maybe baseball too?"
And that was that.  He was up.  All day he kept asking me when it was time to head to the doctor.  This boy was EXCITED!  I was too.....but yet also very nervous not knowing what she would say.

The final verdict................(insert drumroll here):

     -INCISION HAS CLOSED!
     -he is released to swim!
     -he can finally play baseball (beginning next weekend) and finish out the remainder of the season with the  rest of the Pirates!   (but will be restricted to the outfield......per Mom and Dad)
     -he is back up to 50 lbs!!!!  Pre-surgery weight was around 52.
     -there is a VERY VERY VERY happy boy sleeping soundly tonight, likely dreaming of Josh Hamilton!

We have been celebrating this evening.  What an amazing(ly difficult) year this has been, yet we are so excited for Caed!  He has waited for this day for such a long time.  Words fall terribly short.....

Please continue to pray for Caed, and yes....the incision.  Todd and I are beyond relieved and excited, and yet I would be lying if I said we weren't still scared.  How do we know it really is closed this time?  What if something happens?  We are desperately praying for God to shower us with His Peace and to give us wisdom.  I desire so much to completely let go of the rope I have been clenching this entire year.  I want to trust fully, yet I know from much experience God doesn't always answer our prayers the way we want.  I know He has a bigger....a better plan.  But my heart screams for mercy to be given to Caed with his incision.

So is it an oxymoron to say we are extremely joyful to see Caed get to finally do all these things he has longed for.....but also scared out of our minds?  Can we at last knock down the wall...the guard....we have been progressively building over the past 12 months?  Is it finally safe to do so....or is the enemy still lingering, still pacing, waiting for just the right moment to pounce.....once again?

THANK YOU ALL so much for lifting Caed up!  And we thank GOD for carrying us this past year, in particular.

Desperately trying to REST in His Healing Hands....



                                       (first BIG bath in.......a long time)

Peace Be Still

This picture basically sums up my heart and soul these days.  I am feeling the pressures from every side and have recently come to the realization, "I am running in circles.  Nonstop.  Desperately trying to meet all of life's demands.  And yet things, and more importantly people, are suffering from my inability to do so."  None of these things or people are bad.  Nothing is out to get me....intentionally.  But I feel like the rope in a vicious game of tug-of-war.

My body is weary.  So much so it sent me via ambulance to the hospital 3 days ago.  I am fine.  Unfortunately it's just my body's way of saying.....STOP!

Sounds good on paper.  In reality, an impossibility.

I can pin point the 4-5 other times in my life where it got to this point.  In hindsight, I can also track all the causes that led up to it.  To prevent it from happening again is like trying to stop a roller coaster in the middle of the track. 

The answer unfortunately is not as simple as clearing my calendar.  It's just life.  The day in - day out normal things that everyone must do to.....survive.  I also am fully aware it's not just physical exhaustion that has overcome me, but rather....and more importantly, emotional.  I guess in the craziness of this past year, I forgot to refuel the gas tank.  Riding along on "E" eventually catches up to you.

The answer also is not "summer being 15 days away."  Although I have certainly been guilty of thinking so myself.  Even though my job as a teacher gets to go on vacation for 10 weeks, my life doesn't.  Bummer...

My Beacon of Light has been ever so softly whispering to me...

Peace be still.....

Most times I have been too busy to stop and listen.  Really listen to those 3 little words. I guess the Lord's "mysterious ways" also come in the form of hospital admissions to MAKE us take notice.  Five to be exact just this year. 

As much as I wish for some magical formula, or some special vitamin supplement to provide instant peace....it's not there.  Nothing the world offers will satisfy.  Only the Word of God which I am clinging to for dear life.

"Come to me, all you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light."   Matt. 11:28-30

So far...

...so good!

We are 3 weeks out from the last surgery, and the incision is healing up nicely.  November was the last time we saw this.  Just skin.  Dr. G is pleased with how it looks, but also agrees it is still too early to tell if it's going to STAY this way.  It typically "goes south" around week 4.  We really covet your prayers these next couple of weeks.  We are all crossing our fingers and holding our breaths for all to stay well.  Caed is feeling 100%!  Zero pain, and his big appetite is back.  We are still pushing supplemental nutrition, and will continue indefinitely.  The scale is not showing any weight gain, but I just feel there has been some (maybe just in ounces).  He looks different to me. 

When looking at Caed's tummy, ALL our attention has been directed to the main incision.  But, as I look at this picture, I am reminded of the absence of our long-lost friend, Mr. G-tube.  Quite humbling.  I can hardly imagine what this summer is going to be like.  He can finally take his shirt off while swimming and be "just like his buddies!"  Oh Lord.....let this be!!!

We are still sitting out of baseball, but Caed (as well as some of his teammates) ask me DAILY when he can return.  I feel hopeful he can play at least part of the season.  But....as his mom, there is still so much fear.  Probably more the fear of 'what if' something happened again, and the GUILT that would consume my heart.  However, we are going to continue to take this day by day.....week by week.  I KNOW in the long run, this one season of Little League is a drop in the bucket compared to all that he, Lord willing, will get to do in the future.  He has continued to help be the 1st Base coach for the Pirates.  I love that he gets to feel a part of the team in that way.  It melts my heart to see him out there giving signals to his teammates.  Sometimes he is cautious, but most often he is very aggressive and fearless in sending them on to 2nd!  The Pirates are undefeated thus far.

Speaking of baseball....we are on our way to an afternoon at the ballpark.  Caed's team plays first, then Caleb's.

Thanking God for these peaceful days.......

The Unforgettable Anatomy Lesson

What a difference a week makes!  Each day Caed has gotten stronger, had less pain,.....and a greater appetite.  However, the biggest change we have seen has been bedtime.  He had been getting up every 2-3 hours crying in pain for almost 10 days straight.  He was exhausted.  We were exhausted.  But, each night began getting better.  Longer time between pain spells, until 2 nights ago.....this boy slept 10 hours!  (and possibly would have longer had his mean Mama not woken him up for school!)  His energy level is definitely back 100%!

Now that we have cleared the pain hurdle, our next 2 objectives are weight gain and of course incision staying CLOSED!  We have tried for months getting Caed to drink supplemental nutrition shakes.  He would for a few days, then begin to fight us on them.  We tried them all.  Different brands.  Different flavors.  Different ways of making them.  Still no luck.

But, after our last surgery and loss of 5-6 lbs.....we knew desperate times indeed called for desperate measures.  I knew how well incentive charts work in elementary school.  Wondered if by chance it would work here at home too. 

Well, guess what? It did!  We have not had any trouble getting him to drink one each day.  Now, you may see a small 4-letter word circled in blue at the bottom of the chart and wonder if that might have anything to do with it.  The answer is most definitely YES!  Once Caed fills in all 30 boxes, he will be rewarded with a new BIKE!  (may seem extreme.....but we were planning on getting him a new one this summer anyway since his old one broke last year.....but, SHHH!....don't tell him that!)  He has already started a wish list for his next chart.  Oh boy!  47 was his starting weight.  Our goal will be at least 51-52.  We will get on the scale every Sunday.

This past week in our class we began studying Anatomy during Science.  We started with the brain....moved onto the respiratory system....and then the digestive.  I knew Caed, as well as the rest of the class would be fairly interested in that day.  These sweet friends of his have walked this tough year right along side of him.  Caed has shown them his feeding tube, and a few of them even took turns pushing water through it.  They have seen the various stages of his incision (other than when we were packing it), and have been SO incredibly supportive and protective of him.  I honestly worried at times if I was informing them "too much" of whatever Caed was going through at the time.  But, I truly believe they have learned MORE watching him this year and getting a "hands on" lesson regarding intestines, surgeries, incisions, feeding tubes, and how not everybody is "normal and healthy."

On Thurs., after we discussed how food moves through their body, I asked for 2 volunteers.  Each student held the end of a 20 foot piece of string.  It stretched a little over 1/2 way across the room.  Then I asked Caed to come up and hold another piece of string.  His piece was about 2 feet.  A FRACTION of the other one.  One little boy said, "Wow Caed!  I knew you lost some intestines, but I had no idea it was that much!"  Caed looked at me and said, "I didn't either."  It was an anatomy lesson I will never forget.  To have Caed involved in it, as well as his friends, and for him to SEE the difference.  Although I'll have to admit, it shocked the teacher too.  You can know this information in your head.  You can have doctors tell you things all day long, but to actually see it.....was hard. 

Since that day Caed has asked me so many questions regarding his sbs.  I think he is finally at the age he can really begin understanding some of it.  I also think the string lesson has helped him understand why we have been pushing those supp shakes so much.  Things are beginning to click.

Thank you for all your prayers for Caed once again during these past few weeks (especially).   It can be a reminder of how quick things can change (good OR bad).  We will go for another follow up appointment with Dr. G on Thurs.  Not really sure what to expect.  Incision is actually looking great, but it usually does at this point.  Seems to be week 4 when it goes "bad."  Deep down, I really have HIGH HOPES that this time will be different.  Fear and "what ifs" still rear their ugly heads at times, but desperately trying to cling to His Peace DAILY!

Here is a quote that really spoke to me this week.  May it also encourage you!
"Peace is my continual gift to you.  It flows abundantly from My throne of grace.  Just as the Israelites could not store up manna for the future but had to gather it daily, so it is with My Peace.  The day-by-day collecting of manna kept My people aware of their dependence on Me.  Similarly, I give you sufficient Peace for the present, when you come to Me by prayer and petition with thanksgiving.  If I gave you permanent Peace, independent of My Presence, you might fall into the trap of self-sufficiency.  May that never be!  I have designed you to need Me moment by moment.  As your awareness of your neediness increases, so does your realization of My abundant sufficiency.  I can meet every one of your needs without draining My resources at all.  Approach My throne of grace with bold confidence, receiving My Peace with a thankful heart."   (Jesus Calling)

My heart is hurting

I haven't felt this burdened for Caed in a very long time. Might be odd considering the year he has had, but just in the last few days, it has culminated to the point where it is ((tough)) for me to even look at him. Caed has not been this sick looking since 2008, just before heading up to UNMC for the first time. He has never been a big boy, and we knew with simple genetics....odds were stacked against him there as well. BUT...you throw in the ShortGut, and we are fighting a never-ending battle. Since surgery a week ago, he has lost 4-5 lbs. For a normal child, this would be a lot. For an sbs'er.....it is enormous! His arms and legs are smaller (circumference) than his 4 yr. old brother's. It's been tough being his Mama....trying to console when he is having pain. Typically I rub his back during a spell. Now, I shed silent tears running my hand across.....bones.

Caed is still experiencing some intestinal pain. We are trying to eliminate possible causes (meds), but also wonder if it's just going to take time for all that his gut has been through this past week to simply start working again. During the day, his spells (and # of trips to the restroom) are getting fewer. However, nighttime seems to be the worst. He has been sleeping with us since we got home, and the moans and cries come about every 2 hours.

This morning was the Opening Ceremonies for Idalou's Little League Season. Both Caed and Caleb are participating this year. Caleb is playing t-ball for the 1st time, and Caed is back on his team from last year...the Pirates. He will be "helping" the coaches for awhile, but we are praying he can get stronger and that incision can heal once and for all so he can play at least part of the season. I am not certain of the exact number of players that were introduced today. 200+? As they call each player's name, they run from 1st base to home plate. I was very worried knowing Caed was watching everyone else sprint their hardest when being introduced. I knew he physically could NOT sprint, but was concerned adrenaline pumping might make him push it harder than he needed to.

He was the first player from his team called. He walked. It BROKE MY HEART to see his frail little body walk. Of the 200....he was the only one to walk to home plate. From an incisional standpoint, it's what I wanted. From a Mommy's standpoint, it was almost too much.






Now for the story I have been promising to tell you since Sunday night:
Our plan was to be discharged on Sunday; however, because Caed was experiencing SUCH awful gas pains, Dr. G didn't feel good about sending him home. Our goal was to either pass gas or poop. Caed would sit on the potty crying...."I WANT TO! I just can't!" After 3 c-sections, I could empathize 100%. He had been in such incredible pain that day. White knuckles squeezing the rails of his hospital bed where like flashbacks from a time I never ever wanted to re-live. Helplessness. That's what was consuming us that day.

That evening at exactly 6:45, Caed asked to go back to the restroom. Not unusual. He had been living on it all day. Just NOTHING happening. He sat crying. I stood rubbing his back. Todd and the nurse stood just outside bathroom door discussing our problem. All of a sudden.....you- know- what happens! The "shot heard around the world" took place in room 371. Immediately there was rejoicing. Both Todd and I looked at the nurse and said...."Go get those discharge papers!!!" Tears of JOY flooded that tiny bathroom. Literally 10 seconds had gone by and.....

....my phone alerts me of a text message. I look down to see it was from a good friend who was not only walking this journey with Caed, but also her father-n-law. Sonny's story is nothing less than miraculous. He and Caed have such similar stories, and also share the same docs in the rehab program at UNMC. He is also from Idalou, and ironically, we are currently living in the home he grew up in as a child. To say there is a bond, is an understatement.

The Lord has done absolutely AMAZING things in this man's life over the last few years since his injury, but we have finally seen healing take place just in the last few months. My text read:

"sitting here listening to Sonny give his testimony tonight at church and mentioning Caed and his braveness, thankful for yalls family's story that led Sonny to Nebraska. A special prayer was given for Caed!!...."

I read and cried. I am SO aware of the hundreds of prayers that were specifically lifted for Caed that day. I received many of your messages letting me know your Sunday School classes and churches prayed for him...that day! You will never know what that means to us. THANK YOU! But, something about Sonny leading that prayer right then....and that was the exact time Caed was finally given great relief and ultimately discharged...was unexplainable.

Only God.


Back to baseball. This morning only minutes before the ceremony got started, I happened to look at home plate and much to my surprise, I saw TWO very important people standing there. Sonny....whom I just mentioned. And Tanner.....who has become very special to Caed. His story is also long and amazing. (star Idalou High School athlete who traumatically was injured (brain) in a football game in 2008). Tanner was there to throw out the first pitch. Tears came to my eyes seeing him. Seeing how far he has come. Then as I looked at Sonny, same tears shed for exact same reasons. I know Caed has been an encouragement to them. But now....the tables have turned, and I desperately look to them for HOPE!

Sonny was there this morning to say a prayer for the players, coaches, and this new season. In the middle of his prayer, he once again specifically mentions Caed. I completely lost it at that point. Sobbing there on the front row. My heart is hurting so badly for Caed. He is struggling. He is not healthy. He is still in pain. The Lord knew HOW MUCH I needed that prayer. Despite the hundreds of other parents sitting in the ballpark, I felt so alone. So burdened. But, I felt God reach down to hold me. To wipe those tears streaming down my cheeks and reassure me that just as He has been faithful to Sonny....and Tanner, he will also continue being faithful to Caed.

Sonny is not back to his old self. His life has been changed. Tanner is also not back to his old self. His life too has been drastically altered. Caed is no different. He will never be like he was at age 3. He will never be like all his friends. He will deal with this and FIGHT everyday for the rest of his life.

"Though you lose everything else, if you gain My Peace, you are rich indeed."

In His Eyes

For roughly 48 hours Caed was in a constant state of pain and discomfort. Not from the incision, but rather all the air found trapped in his gut, along with constipation. When I say it was constant....I literally mean NO RELIEF.....none. It was absolutely heart-wrenching to see, or rather hear. Caed has experienced MUCH pain over these last 4 years; however, most was back in 2008. There is one other time in which watching him suffer almost proved to be too much. Gallbladder attacks last summer......which oddly have lead us to our present suffering. We were quickly taken back to a place in which no parent should have to sit by helplessly and watch. We found ourselves in a catch 22. He desperately needed relief! But which do you address first? The cause or the effect? He was given just about everything possible at the hospital to help things "begin moving." It was awful. Absolutely awful. Severe cramping was then brought on from those drugs. So, then we moved to pain management. Anything....to help control the misery he was in. However, these drugs are known to "stop you up." Ahhhhh! We tried everything. Warm pack...walking.....specific foods (which he fought us hard on the last 2!) Caed was exhausted. Todd and I were exhausted. When you find yourself thrown back in this vicious life.....you do what you have to do. Survival mode kicks in, and tough (((tough))) love becomes your number 1 priority.

However....every story must have a happy ending, and this one is no different. Yesterday at lunch I came home from school to check in on Caed and Todd. I could see the back of his head sitting on the couch. But, as he turned around and we made eye contact, I knew.

Pain had indeed left the building!

Caed's eyes were back. His smile was back. His voice was back (had not heard him really talk in 4 days....only moans, cries, and screams). He stood up (yes, a little hunched) and walked toward me. DRASTIC CHANGE! He was so excited to tell me he had pooped 4 times! (remember in Short Gut World....your life revolves around this!)

Caed is back. He may walk slower....a little hunched back....and literally skin and bones, but none of that matters. To see his smile. To finally hear his contagious laugh. Is enough.

We will head back to see Dr. G tomorrow. Now that our plumbing issues have worked themselves out, we will turn our focus and PRAYERS on incision healing. ONCE and FOR ALL!

Thank you again for all the prayers voiced for our little warrior. I told you I would share an amazing (God) story from this weekend. I have not forgotten. Once we have caught up on our sleep and get unpacked from our latest hospital stay, I promise to share it with you. Just wanted to let you know your sweet prayers for Caed were heard and ANSWERED!! We love you all!

(Caed is still experiencing sporadic pain spells...nothing like before, but Lord willing, even those will be gone very SOON!)

Home

This unfortunately needs to be very short tonight. (although I have MUCH I want to share) We are all utterly exhausted, and I have a feeling we'll be getting very little sleep tonight either.

We got home about 9 this evening. Praise GOD for that!! BUT....Caed is still in quite a bit of pain. The x-rays this morning showed lots of air in the right side of his bowel. This is where Caed has been pointing to (complaining) since day 1. It was a REALLY hard day today. I honestly can't remember even one time in which he smiled or felt "good." Today reminded us SO much of 2008.

I will have to fast forward, but promise to come back and share an amazing thing that happened just before discharge. Thanks to YOU ALL!!

But, for now.....simply say, THANK YOU for all your prayers for him. But, also would ask you please continue. He is hurting more (continuously) than we have seen in a very long time. It WILL pass. Just extremely hard on him.....and for us to have to sit by completely helpless and watch is tough on us. I know with each passing day he will receive more relief, and before we know it, we'll be getting on to him for running in the house or pestering his little brother. (times like tonight though I sure wish it would come SOON!!!!)

Thank you again.

#7

Caed had 2 very important visitors yesterday. Two of his BIGGEST fans! My....time has flown by. I can't believe Caleb is now the age that Caed was when the volvulus first occurred. It wasn't the best visit since Caed was still fresh from surgery and in a lot of pain, but I know it did all three of them good to see each other.

Caed had a VERY rough evening! Basically in pain the entire night. He "slept" only 15-20 minutes at a time. Pretty tough on Mama to witness....again. This morning, however during rounds Dr. G upped his pain med quite a bit and also added a stronger one to the mix. Since then, he has finally been able to get some much needed rest. Thank you God for that!

Our original plan was to be discharged sometime today, but.....definitely not going to happen now. Our goal(s) will be to get pain under control, walk, EAT, and of course have a bm. I honestly think the pain issue plays the biggest role. If it gets under control, he will just naturally feel better. Therefore, the walking, eating, etc.....should come.

Dr. G feels she may have finally fixed our 10 month long problem. Todd and I are also very encouraged. She opened him up quite a bit more this time. His intestines had pushed their way back up....she fixed that, as well as cleaned up the site again. She also ended up completely closing the hole in his stomach (via g-tube). Something we had kept open (just in case he ever needed it again). Thank you all for your prayers for him over this past year (as well as 4 long years).

We are slowly making progress today....

Persevere

My intention was to write an informative post tonight regarding Caed's surgery today. However...my body is screaming at me that it can't stay up much longer. I promise I will update sometime this weekend (as Caed allows). He had a typical first day of surgery....slept a lot, but also has been in quite a bit of pain. (incision is much bigger now) Controlling it, as always, is our #1 objective at this point. The next several days will be ((tough)), but hopeful he will bounce back to his old self in no time. Thank you all SO MUCH for all the messages you sent. Many times today....I became so overwhelmed at your love and support (and particularly prayers), I intentionally had to stay away from my phone. Seeing them all, and being reminded of each one of your faces, was at times too much for this emotional-basket-case Mama. THANK YOU!!!!

Wanted to simply write an excerpt from a book my mom lent to me last night entitled Jesus Lives. It really spoke to me:

TRIALS
"One of the hardest things about trials is the uncertainty about how long they will last. Usually you can't predict or control the unpleasant circumstances. You just have to live with them indefinitely. At times you may feel as if you can endure no more, but you can always reach out to Me for help. As you cling to Me moment by moment, I enable you to persevere. This produces in you not only endurance but also a harvest of righteousness and peace." (Sarah Young)

Lord, may it be with us...

Desperate

3rd wound revision.

4th surgery this school year.

7th time in the operating room.

Our hearts break for Caed. We hate that this year-long battle is still far from over. Last night I overheard him talking to Caleb. He said, "If they don't get these stitches out and fix me, I'm going to die."

TIMEOUT!!!

I quickly rushed in to correct him and reassure little brother who was in shock at this point. I don't think Caed truly believed what he said, but rather was trying to articulate his built up frustrations and fears in the only way he knew. After I talked to him for awhile, he said, "I know....but I just want to be a NORMAL KID for a change!!"

Deep down....so do I.

Tonight Caed had his first baseball practice of the season. Todd and I had decided to go ahead and sign him up with the understanding that he possibly wouldn't be getting to play much. He is on the same team as last year, the Pirates. He LOVES baseball (well, any sport), and keeping him from "playing" was absolutely heart-breaking. His coach was truly wonderful and told us if at any point Caed wasn't able to play.....the coaches sure could use his help. This really cheered Caed up and was just the thing he needed to hear. Tonight however, Todd and I decided to go ahead and let him practice. As long and hard as he could and wanted. He did wonderful. He LOVED every minute! And I know for that hour.....he felt NORMAL again. That alone did more for him than any medical treatment over the last several months.

This afternoon we saw Dr. G again. After reviewing the past 2 surgical reports from NE, she and her team decided we would give it ANOTHER SHOT. I will not go into all the complicated details that were discussed, as well as the past 3 surgeries and what actually took place during them......but will do my best to give a summary of what's to come:

*Surgery #7 next Friday. Here in Lubbock. Because this is an incision issue only, it is easier for us to stay here and let Dr. G handle it. (If it has to do with intestinal rehab, short gut, etc....UNMC is our one and ONLY choice!) Funny though. This whole thing actually started because of sbs. Gallbladder gone bad.

*She will go back in and clean it all out (again). This time however.....NO stitches will be used at all. The last surgery, Dr. M kept the wound(s) open to heal from the inside out....also trying to avoid stitches that could cause infection. He did, however....use a type of highly dissolvable stitch way down deep. (do you like my medical terminology?) Dr. G however, said she would not even use that. I don't think this is ideal for surgery. She said several different things could result. It could heal beautifully from the inside out with ZERO complications. (I voted for that one!) Or scar tissue would build up and a possible ab hernia could develop.....resulting in a surgical fix later on down the road. (Boo!) Or....none of the above. And we could still be dealing with this same lingering issue next month. (Don't have a comment for this one. Can't think about it)

Caed cried when we got back out to the car after leaving her office. Tears streamed down his cheeks as he cried...."I'm tired of all this! I want it to be OVER!" I wanted so badly to just hug his neck, cry right along side him, and tell him I felt the SAME WAY!! But....he's 8. I know he doesn't have the maturity yet to understand. Seeing Mom cry too would only scare him further. I have gotten pretty good at on-the-fly pep talks, so I did what I always do.....try my best to let him know it was going to be easy, and that these doctors SURE love him a lot and will take extra good care of him. (I also threw in a few things about baseball and swimming....and how hopefully this will finally do the trick, so he can be FREE to do whatever he wanted this summer!) He settled down fairly quickly as his mind completely turned to baseball practice. Do you understand even more why Todd and I gave him NO limitations tonight? He desperately NEEDED it.

My heart continues on this wild roller coaster ride. One minute I am frustrated. I am questioning God. What in the WORLD could be His purpose for all this?!?! The next minute I am counting my blessings. Seeing that things could be so much worse. But, maybe in an odd way....that's why it's been SO frustrating. Over the past 4 years, we have dealt with Caed primarily under 2 umbrellas: very sick, knocking on death's door ~ OR~ outwardly so "normal" people have no idea what he has been through or currently deals with (sbs). Overall, this year has been neither. We can fill in the blank with either scenario: He's not serious enough to warrant ______, but he's not healthy enough to get to ___________. Tough. Especially at age 8!

To get your hopes up, only to be let down.....then back up....then let down again....back up.....and now down.....is paralyzing. You are afraid to think positive. To hope and pray for the best. To BELIEVE that this time will be when God chooses to heal him. Because deep down.....in the deepest, darkest part of your heart, you are afraid. You are bitter. You are tired and frustrated and just want "TO BE NORMAL!" You prepare your heart for the worst, and begin worrying about things that haven't even happened yet. To think otherwise.....will only set you up for further disappointment. You have prayed. Others have prayed. All over the country.....and world. And yet, nothing. Absolutely nothing has changed.

I could end this post many different ways. Thoughts, Bible verses, sermons, encouraging words spin wildly around in my head. I hear them. I see them. And yet they continue swirling around and around faster and faster. They will not stop. I cannot grab a hold of any one. I know they are there! And yet all I can do is close my eyes, raise up my arms and allow them to fall on me. I want to say "It is well with my soul"........"Do not be anxious for nothing".............."HE has a plan"........"My Savior can move the mountains."

But, tonight.....I am tired. I need a good cry. I will simply close my eyes and believe "His mercies are new every morning."

Until then.