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A Week of Anticipation

I really don't have much to write about this week, except to talk about the wait. Ben has been back to school, today is  his seventh consecutive school day. After being out for so long (basically from June of 2013 until January of 2014, so effectively seven full months) he is not performing well. He is physically able to make it through the day, but he steadfastly refuses to do any work. Some of that may be him being physically uncomfortable and worn out from the ongoing pancreatitis. Most of it, though, is just him being smart and cunning enough to pretend not to understand what his teachers ask of him. Tasks that he could easily complete in the classroom last spring he now pretends are insurmountable puzzles. He'll play "no habla englais" in one moment, and then when he thinks nobody is looking he will be visibly satisfied with his deception. He's not a dumb kid. But he is still miserable most of the time, with only tiny reserves of energy.

As for me, I am terrified about what next week will bring. Exactly one week from today we will be loading him up in the car for the ten hour drive to Birmingham. That's ten hours each way in a car with just me, my sick adult child, and my ex-wife, heading to a terrifying surgical procedure in a strange city with a doctor whom we have never met. What could possibly go wrong? Part of me wants to believe that this is all just play-acting, that Ben is actually totally fine and just hamming up an illness Ferris Beuller-style to avoid school. But the ultrasounds and CT scans don't lie. Those stones are still there blocking his pancreatic duct, those two strictures aren't relaxing even though the presence of the stents should have relieved all of the symptoms. The truth is that the Atypical Cystic Fibrosis is continuing to attack his pancreas, and it's only going to get worse over time. So yeah, I'm worried. A lot. But I am also hopeful. I know that immediately after the surgery Ben will mostly be out of it, and that he will go through a phase of recovery where he is in quite a bit of discomfort, but a month from how he should feel better than he has in literally years. So I am trying to focus on how happy Future-Ben will be, while doing everything I can to keep Present-Ben comfortable and in good cheer. At this point that's all we can do.


1 Comments:
melissa buck
In case I dont have a chance to check again I am sending positive thoughts into the universe for you all to have a safe drive both there and back as well for a successful (and smooth) surgery and recovery for ben. I hope this is the end of a long long road and 2014 turns out to ge a fantastic year!
Missy

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About Shmoolok

The word "shmoolok" is a mashup of the longtime computer handles for my wife and myself ("Shmooby" and "Lokheed", respectively).

I originally created this website to be a place for my family to connect, but it has since grown into something a little different.

As for me -- I am a father, a husband, a son, a software developer, and a writer. On any given day I am not sure how good I am at any of those particular things, but I do try my best.

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