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."