Will I EVER get used to it?

Disclaimer: if you are a parent of a Short Gut child, then please do yourself a favor and close out of this particular post. This one is not for you. :)








I have many fellow short gut moms all across the country (and now WORLD!) that I stay in contact with on a weekly basis. We all read each other's blogs/websites, and have somehow formed this unique kindred friendship. Very few of us have ever met face to face, but yet there is a bond between us that is strangely closer than the relationships we have with our very best friends. We can share and vent and cry and rejoice together knowing someone else truly understands! Another mom has had to go through what I've gone through.....the pain and frustrations. The loss of our dreams for our child. We can talk in "short gut terminology" and can completely relate to one another. Our pantries have been transformed into pharmacies and most of us did not go to school to become a nurse; however, the calling has been placed on our lives whether we wanted it or not. With that being said.....I know my SBS friends will roll their eyes and laugh aloud at what I am posting today. You see, this is something that is quite common for them. Just another nursing skill they have all mastered, and probably have had to use more times than they care to admit. Most of these moms have had an SBS child since birth. That means they have had to go through all the tubes, pumps, meds even during the "terrible 2's." (which is something I literally cannot even imagine....seeing as I have a healthy one of those right now)

Because Caed was 4 1/2 when his volvulus occurred, he was at an age when he may not have understood what was happening and what the drs. were doing to him. BUT....he knew all the devices hooked up to his little body were not right....it wasn't normal. Therefore, he has always been extremely cautious of his central line and G-tube. Always SO very careful not to pull on them, and instinctively protecting them with every move. We have laughed at how (once he started feeling better) he would always "fall" on his right side. (when playing football or wrestling with Reagan) It is automatic with him...to protect his mic-key button.

For those of you who have faithfully kept up with Caed's blog, you might remember a very similar posting back in Nov. while we were still at UNMC in Omaha. Caed was dancing on the bed.....and all of a sudden his mic-key fell out! It was the first time, and I was a nervous wreck (although trying to be as calm as a cucumber on the outside). I got through it, and it hasn't happened again.

....until Friday morning. We were loading the van at 6am heading out for Lubbock to celebrate Caed's birthday with family. He was simply climbing into the car when he started crying. I looked at him...... and then my eyes fell to the ground where I saw his g-tube/button still attached lying in front of us. I immediately went into frantic mode, all the while trying to calm a scared little boy. I called Todd to run get his "backup" out of the med bag carefully packed away in the van. As I lifted Caed's shirt......the sight was something I don't think I can ever get used to. We have been through a lot with Caed....and ALL his battle scars. He has had tubes going into every inch of his body at some point. And yet....the simple sight of a bloody hole the size of a dime on my little boy's tummy.....can be too much. It reminded me of a gun shot wound. Something completely unnatural, and something mommies shouldn't ever have to do to their small children. The image is burned into my head and quite frankly sends chills up my spine. As I wiped off the blood that was dripping down his belly, my heart was racing and hands shaking. I did what I had to do. Lubricated another button, pushed it back into his abdomen, and inserted the water-filled syringe. All was fine. All was back to "normal" and yet I couldn't calm myself. I wanted to lay down right there on the kitchen floor and cry my eyes out. Not because his button fell out. But just the reminder that this nightmare is still not over. Caed is doing miraculously well! He has made tremendous progress that even the drs. have been amazed at. And yet......it's times like this for me that it all comes crashing back. The emotions. The sadness. The fear. The disbelief.

As I was still standing in the kitchen cleaning up the blood, the counter and floor, Caed walked up squeezing his arms around me and whispered....."I love you Mommy!"

To this little boy, I was his hero that early morning. He was terrified and his mommy fixed it and made it all better!

I feel very similar in many ways. There are those times when the unthinkable happens, we become paralyzed and cry out to God for help. He calmly scoops us up in His big arms....whispering all the while "It's going to be ok. I'm HERE! I will take care of you." And HE does! He doctors our wounds and seals them with a heavenly kiss. He is our ever-present hero......always there to save the day.


I am very aware of my fellow short gut friends and the nightmares that they continue to live each day as well. I am humbled and eternally grateful for where we are today. Where the LORD has brought us. I know that if this is the very worst thing that has happened lately, then we are truly blessed! There are many kids out there who are still suffering. They are still waiting for their miracle of healing and quieter days. We pray for each of them and have grown to love them like they were one of our own.