Weighed, Measured and Found Wanting

The scene begins in a medieval prison cell when the good guy, Heath Ledger, arms outstretched and chained to a pole is subjected to the worst kind of abuse imaginable. "You've been weighed, measured and found wanting", says the bad guy to Ledger as he punches a defenseless hero in the gut.

Weighed, measured and found wanting. That's what I felt for my daughter, who had been diagnosed with Crohn's disease since she was 9.  The medical treatment plans that included surgery, infusions, oral meds and an NG feeding tube were judged by inflamation markers, iron levels and growth.

She weighed in at 52 lbs. She lost 5 lbs., 10 percent of her body weight. She gained half an inch and is not even four and half feet at the age of 13. Waiting for the doctor to come into our exam room, felt like court sentencing. My daughter had already started crying, chanting "not the feeding tube, not the feeding tube."  My mind was going a mile a minute trying to figure out what might have caused the weight loss.

It wasn't until days later that we received the verdict. My daughter would be doing weekly injections of methaltrexate in addition to her remicaid treatments.

Arguments over eating enough, getting enough sleep and taking her meds are a common theme in our house. After four years of trying various treatment plans-all with side effects, how does my daughter NOT feel judged? How do I judge the disease and not the child?