Living in Fear

My son, Max, turns ten at the end of the month. In December 2011, only about a week and a half after his youngest brother, Elliot, was born, we rushed Max to Children's Mercy Hospital in Kansas City, Missouri because of blood in his stool, a positive test for malicious bacteria, and some joint pain. Five days, several blood tests, a colonoscopy, and sundry medications later, Max was discharged with a diagnosis of Crohn's disease.

He's had struggles over the last four years, little Crohn's/Colitis related things that anyone familiar with this monster will know well. Things took a nose dive this past December, and between mid-December and the end of January, Max spent five weeks in the hospital. The doctors tried new meds and more meds, but in the end, my almost ten-year-old had his colon removed on January 20th. All of it.

I do not like to live in fear. Show me the monster, and I will meet it head-on. Now that Max has had a very necessary surgery, he's living with a "temporary" colostomy bag. Temporary in quotes? Yes. He's had one subsequent surgery to resection/restructure his small bowl, and we should have another to "reconnect" his "parts" down the road. Here's the fear and frustration part: his GI specialist and surgeon disagree as to the timing of this final surgery. The GI doctor is full of "what ifs" and "possible problems." Talking to him is a lesson in bodily horror, something with which I struggle, both as a writer and a human. Yes, there are possible problems if we reconnect. The surgeon is more optimistic. Neither agree--neither have even spoken to each other as of this writing--but we are faced with a decision: When to do the final surgery.

I do not like to live in fear.

I've learned all too well that life will bring tragedy regardless of what we do. I lost my father to brain cancer, my first wife to postpartum psychosis, and Max has this awful disease. None of them "asked" for it with dangerous living. This isn't another story of someone "getting what he deserves." I cannot and will not believe in a prosperity gospel when two good, caring adults and one innocent child face such monsters. Bad things happen to everyone, and we are defined by how we respond.

So what to do about Max? In two hours, I'll listen to his surgeon make a case for re-connection. Max has expressed his lack of love for the bag--something that if things do not go well after re-connection, he may have to live with, anyway. I've always been one to steer into the storm rather than trying to run. The storm is coming either way, and when we lie to ourselves about having control... well, that's a fast track to fear.

I will not live in fear.