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."