Praise You in This Storm

I have so much I want to write about, and yet for the last several days, I have felt completely paralyzed. I don't even know where to begin....

The last 6+ weeks have been a gradual nightmare that I begged God to please stop. The amount of pain and the severity of Caed's attacks got to the point (up until hrs of boarding the plane to NE) that I couldn't continue sitting helpless at his feet watching him suffer. I was desperately needing to cash in my 'good actress card.' Even though the sbs, colonoscopy, and endoscopy all showed his bowel looked ok (minus the finding of the hiatus hernia), we still felt it had to be Short Gut related. As I began explaining to the IRP team at UNMC what the past 6 weeks had been like for Caed, immediately Dr. M asked, "Does Caed still have his gallbladder by chance?" Gallbladder! What in the world are you talking about? No other organs need to be discussed here. ONLY bowel! I knew during Caed's initial surgery 3 yrs. ago, the surgeon did remove his appendix (along with the majority of his intestines). But, I didn't remember them ever mentioning the gallbladder. They immediately scheduled an ultrasound to find out, as well as keeping a close look at the pancreas. Caed was very scared about this "new test, " but later informed me it was now his favorite! Mine too. The dark, cool room.....with the hum of the machines lulling you to sleep while someone gently oozed warm jelly all over your tummy and back. It lasted almost 2 hrs, and Caed dozed off more than once. Todd and I of course were feeling torn. Nothing wrong with bowel = GREAT NEWS! A problem with entirely new organ = sick to our stomachs. Obviously, we knew between gallbladder and pancreas, we definitely wanted it to be gb. At this point, I knew our 3 day scheduled trip to UNMC was going out the window in a hurry. I was alone and scared.

Meanwhile, while all of this was going on with Caed......our dearest UNMC friends from NZ had just lost their 5 yr. old daughter. This wasn't supposed to have happened. They had journeyed long and hard to get to the US for Aria to have a shot at life. (multi-organ transplant x2) God had done amazing things in this little girl's life. He indeed had preformed miracle after life-saving miracle in her 5 short years of life. My heart was absolutely broken. Broken for a hard fought battle that had been 'lost.' Broken for this amazing Dad who had to let his baby girl go. And broken for a Mom who held her one and only daughter in her arms as she went to be with Jesus. This was my friend. I couldn't even fathom the pain, the grief, the hurt, disappointment....coupled with the joy, HOPE, and unspeakable peace they were dealing with. The timing of our trip to NE was 100% providential. Our apt wasn't scheduled for 3 more weeks. But, due to the (gallbladder) attacks Caed was having, it was imperative we get there ASAP.

God knew.

He knew 4 friends needed each other. He knew we each needed comfort and encouragement. We needed to say good-bye..........

I needed more last week. I needed a reality check. I needed perspective. As much as my heart was hurting for Caed, I needed to be reminded of families who would long for a simple gallbladder removal surgery. My fears then turned to thankfulness. I was thankful for God's mercy on my son. Selfishly....thankful for my 'normal, healthy, thriving 7 yr. old.' Sure, Caed has issues, chronic ones...but he is alive. Guilt soon began flooding my soul. WHY GOD? WHY?? Why do you spare some children and allow others to suffer.....suffer hard? We will never know the answer to this question and many others like it this side of heaven. But, maybe I got a glimpse.....

Aria's funeral was streamed live on the internet. Chills raced down my spine as the picture loaded and I could see my friends sitting there on the front row. Across thousands of miles and many time zones. There I was. (Seemingly) sitting right up in the balcony overlooking the congregation below. Puddles of tears formed on my kitchen floor. My heart was exploding for Anita and Hamish. I simply couldn't imagine the pain they were feeling at that very moment. The denial. And yet....the tears fell harder and longer as I watched these precious 2 raise their hands and sing PRAISES to their Holy, Faithful, Loving God. He was there! He was holding them up. And He was TRULY honored in that service. Maybe I had it backwards. Maybe Aria was the one that was 'spared.' And Caed is the one that is still left to suffer on this earth awhile longer. Either way, God knows and He has a plan. A plan that will bring Him the most honor and glory. We PRAISE Him for Aria's life. I think it's impossible to count the number of people (ALL over the world!) that God lovingly allowed this little girl to touch.



Hamish and Anita have become our life-long providential friends. The story of how God led us to each other is.....amazing! We don't know when/where our paths will ever cross again (face to face), but the unlikely friendship that was formed 2 years ago.....will last forever. We love you both SO very much!!

Now, back to Caed. The ultrasound showed everything to look great....except the gallbladder. It was enlarged, contracting, had very thick walls, and just didn't look right. So, what do you do? Take it out! I knew this was a very common surgery and people could live normal lives without them. However, Dr. M decided against doing it laproscopically and instead would cut on Caed's original incision. He wanted to take a liver biopsy (his numbers looked good, but just something you want with these SBS kids when you get a chance). Todd was able to fly up the Thurs before the surgery and stay through the weekend. Such a blessing! I was really nervous about telling Caed. This time he wasn't in shock.....bleeding internally....and close to death. We had 2 days to think about it....dwell on it, and allow our minds to go to places it shouldn't. Memories, awful memories flashed in my mind continually. We hadn't experienced "easy" surgeries and hospital stays. My mind couldn't fathom what that would be like with Caed. But, we simply had to trust God and remind ourselves Caed was still being held ever so tightly in His arms. He hadn't let go...even 3 years later. The day of the surgery was very difficult. Caed was now almost 8 years old. He had past experience and knowledge of things that 'happen' in hospitals. He knew being put on a gurney was a scary thing. He knew he would be wheeled away....alone.....with strangers, and that pain would occur. He was SO brave. Fear filled his eyes. He whispered for us to please help him. To make it all stop. And continued saying over and over how he just wanted to go home. 'Good actress card' had to be pulled out yet again as I remained cool, calm, and collected and reassured Caed this would be 'quick and easy.' (even though my heart was screaming the exact same words as Caed)

The surgery was successful. Lasted almost 2 hours. Pain did indeed pay Caed an uninvited visit over the next several days, but he was so strong and brave and did exactly what the drs and nurses told him to do. As Caed recovered those next few days, I caught myself just starring at one amazing little guy. My heart was so very proud of the person he was. He has had to endure so much these past 3 years, and yet you would never know it. His personality is magnetic. And I knew God had such wonderful plans for his life. At the same time.....my heart was also so very broken. He is 7. These past 3 years have been filled with so many tests, procedures, surgeries, medications, tubes, lines, sticks and pokes. What will be next? Yes, this surgery fixed our current problem, but will it just continue...? One problem after another for the rest of his life? Again, thankfully I don't have the answer to that question. Only ONE person does, and it's imperative at times like these we don't forget that. That ONE person has promised that He has plans for Caed's life. Plans to prosper him. To give him a hope and a future. We have to cling to those words. To trust.

Caed is most certainly our Rockstar! He is healing wonderfully. Back to his old self...minus a little slower and hunchbacked. The awful pain that he had been suffering with the past 6 weeks....is GONE!!! Praise God! We truly hope the gallbladder was the cause and now is taken care of. Caed will need to 'take it easy' the rest of the summer which will be a chore in itself for Todd and I. (please pray for us! ha) I think Caed understands....but again, he's 7.

And by the way....we have learned that this was Short Gut related. Over the past week, so many of our SBS friends have confirmed this as their children also had to have their gb's out at some point during their journey. I don't remember the entire anatomy lesson Dr. M explained to me...(or was it actually that most of it went over my head?), but it has to do with the ileum, bile salts, and gallbladder. Since Caed does not have his ileum (section between sm and lg bowel) anymore.......the gallbladder most always goes 'bad.' Dr. M said when he performs surgery on these kids for whatever reason, he always removes the gallbladder (even if it looks perfectly healthy). The surgeons here in Lubbock who took out Caed's bowel initially were not looking long term. They were not thinking "short gut life." They were solely focused on saving Caed's that night. And for that, we are thankful.

We are home. Ready to finally start our summer. I, on the other hand, came down with a case of shingles while in Omaha. I wonder how that happened?? ha I certainly have not been under any stress this past month.... I am hurting pretty bad, and medicated.....but once again questioning God's timing. ;) This too shall pass.

Here are a few pictures from Caed's homecoming Wed night. As my dad, Caed, and I made our way home from the airport, this is what was waiting for us. It was SO sweet. 12 friends/cousins painted signs for Caed and hung them on the bushes, front door, and walkway. Tears fell again that night. I was reminded of God's compassion and how He provides just what we need when we need it most. This was simple. Created by children. And yet exactly what my heart needed right at that moment.

We have been overwhelmed once again at the outpouring of love and concern for Caed during this time. Our hearts are FULL! And we are truly humbled by the thoughtfulness and generosity of so many. Our cup runneth over......






I will leave with Caed's theme verse:

Consider what God has done. Who can straighten what He has made crooked? When times are good, be happy: but when times are bad, consider: God has made the one as well as the other. (Ecclesiastes 7:13-14)

....which is how we can still praise You in the storm!