We have put so much energy into educating our children.  For 13 years my job of choice was schooling our children in conjunction with the local parent partnered program.  Since our oldest went to the traditional high school and had a good experience, we thought that was the route we would chose for Ben.  The district had other ideas.  We have spent countless hours over three years to get the Home/Hospital Instruction program in place through the parent partnered program.  Despite missing an average of 67% of the three previous years, Ben maintained a 3.8 GPA. Until this quarter he was 4 credits ahead, ready for college math three years early.  In the past Ben's primary doc has called him "unmotivated." It was almost funny because it was so far from the truth.  This week the doc indicated we weren't doing all we could to get Ben back in class, and that Ben wasn't getting a decent education by missing so much school.  I lost my sense of humor. 

This was on top of the "death card" speech.  In attempt to quell the line of thinking that Ben is creating his own illness by stressing out, we have covered all the bases ever mentioned plus more (psychiatrist, pain management and adolescent medicine at Children's, self-hypnosis, acupuncture and chiropractic treatment).  I strongly believe in the mind/body connection, and remain open to all kinds of healing.  And there is no doubt that living with an anvil over your head (the next flare) changes the way a person (and his family) thinks.  But given an option, the last thing Ben would do is waste his remission.  People who KNOW Ben, KNOW he is upbeat, not one to lay around and dwell.  He has plans; he has a sense of humor.  He also has a deep connection to his local nurse, so he is reluctant to leave the primary doc even though dealing with him can be so draining for me. 

Today Dr. Emery spoke with the GI doc and the primary doc.  I asked her if the primary doc told her his theory.  She yes, but that she is not willing to entertain that idea until every organic cause has been ruled out.  She looked Ben in the eyes and said it must be frustrating as hell to be sick like this for so long.  She gets it!!!  She is especially concerned that Ben has been on the couch so much lately.  Normally, even when he is miserable, he still tries to get out and get some fresh air.  Dr. Suskind suggested another gastric emptying study because things may have changed since the last one, and the results could have implications on the Nissen surgery being considered.  That will be the same day as all of those other tests.

Hopefully, plenty of time will pass before we need to see the local doc, so I can work on forgiveness.  Ben has told me how much he appreciates my advocating for him.  My close relationship with Ben gives me the strength to continue to face the fire.