Now you see it....

....tomorrow you won't!


The reality of what is taking place tomorrow leaves me......speechless. Thoughts and memories are spinning wildly in my head of the past 4 years. Yes, that's right. Almost 4 years to the day. March 1, 2008. The day that changed our lives completely.

Or did it?

During my senior year in high school I was introduced to this "new doctrine" called the Sovereignty of God. It was exciting. It was mind-boggling. And yet brought abundant amounts of joy and peace over the next 17 years. Then it happened. That's when the rubber truly met the road, and we were tested. Did we truly BELIEVE what we said we did? Was God really in control of all things? Even the unspeakable...?

I remember like it was yesterday. The early early morning of March 2. We had been in the ER for many hours trying desperately to come up with a "cause" to Caed's excruciating pain attacks. Then....the surgery. 5 hours. 5 very long hours in the middle of the night. We were the only family left in the waiting room. A small group of 5-6 of us. At times we tried to be normal. We attempted small talk even though none of us were really interested. We got up and walked the cold, dark empty hallways. I remember going into the stall of the nearest restroom many times just to cry. To pour my heart out to a God who seemed a million miles away. Then, I would dry my eyes, walk out and pretend to be brave again. After Dr. G finally came out and explained what she found and ultimately was forced to remove, we stood in the hallway and watched them wheel him away. He didn't look like Caed. His face was abnormally swollen, a giant tube placed down his throat (breathing for him), and another dozen tubes/wires covering his tiny 4 year old body. Once we got to see him for the first time in PICU, they told us he obviously could not respond, but encouraged us to talk to him. Todd was wonderful. He was so sweet, kind, and loving and told Caed how good he was doing and how much he loved him. Then it was my turn. Awkwardness filled the dark little room. I didn't know what to say. This was not normal. How could I talk to my little boy and tell him he was doing good and looked good?....when I knew he wasn't. I couldn't look at his frail, trauma induced body. They were telling me it was Caed. It was not. I forced out a few words...trying to hold back the flood of tears that were ready to roll at the slightest blink of an eye. It was all so foreign to me. Completely unnatural and made me sick to my stomach. An hour later, our parents told us we needed to go get some rest (6 am). Since Todd's mom lived just blocks from the hospital, her house would be the ideal spot. Once we finally got there and got settled into bed (still wearing the exact clothes we had been wearing almost 24 hours prior), we lay there in silence. Our bodies screaming for rest (physical and emotional), and yet all we could do was stare intently at the ceiling. Stunned. Finally, Todd reached over and grabbed my hand and began to pray. I squeezed my eyes shut wanting desperately to tune out what he was saying. Hearing Todd pray like that only validated the seriousness of the situation we had unexpectedly found ourselves in.

Fast forward 50+ days. We were still in the hospital and Caed had just had his 3rd bowel resection. After this particular surgery the words "multi-organ transplant list" were brought up several times. A few days later, Todd and I were forced into a "conversation" that no parent should ever have to experience. I have blocked out most of what was said that awful night....except 2 little words. "Burial plot."

Since that day, we have experienced many highs and lows, and have plenty of material for our very own "made-for-tv-movie." (but then again, who doesn't these days?) To sit back and contemplate it all.....where we were 4 years ago, to where we are now, is truly amazing. It makes nights like this one tough. Tomorrow is a HUGE milestone for Caed. One that will not soon be forgotten. In a way, it represents his "healing day." Even though we have not used his g-tube for several months, it's still there. It is a constant reminder. Honestly, I'm not sure how I will really feel with it gone. Caed has had it 1/2 his life! It has made Caed who he is today. And yet, SO much joy floods our hearts. I look at Caed's future now.....and smile.

It's easy to see the ways Caed is different when we are back home with all his friends. Outwardly, no. He is as normal as they come. Thank GOD for that! But, there has been a list of things Caed can't do. Most have been easily accepted and understood over the years. Others, not so much, and tears and heartache usually come. As hard as it is coming back to the hospital (for whatever reason these days), it is here that we are continually reminded of God's grace. Here at UNMC, some kids call this "home." On a daily basis, these drs operate and care for very sick children and try to manage their long-term care. But, it is HERE....that the tables are finally turned, and Caed gets to be the "Intestinal Rehab Rockstar." Here, he gets to be the poster boy. And it is here, where we are constantly reminded of just HOW FAR he has come.

Today in our pre-op anesthesia meeting, it hit me. The doctor began asking, "...so he isn't currently on ANY medication?!?" The answer no. "He hasn't used his g-tube in several MONTHS?!?" The answer no. "Does he still have any home health care?" The answer no. "Does he still have his central line?" The answer no. "Does he eat entirely my mouth?" The answer....Y-E-S! (and then some...) "Is he active?" The answer....you don't want to know. There were days/months/years in which our answers to those questions would have been quite different. I sat staring at Caed (beyond bored at this point) and wondered if he really knows how SPECIAL he is. The God of this Universe has held him in the palm of His Hands. In His own perfect timing, He has brought Caed to this very day. Todd and I will never understand why He chose to have mercy on our son 4 yrs ago....and all the days that have since passed. BUT...without a doubt, we recognize it! We SEE His Handprints all over his little body! And they are beautiful.


Take a deep breath, close your eyes.........for tomorrow Caed will have a BIG surprise to show the world!