My mom will be posting once a week throughout February, so enjoy this post written by Karen Brocker as she writes what it is like to be the mother of a daughter with a not so normal life.
Sarah has been on many of the most often prescribed medicines used to treat Crohns’ disease. She has also tried quite a few, not so common medicines. We have been the route of using an off-label medication. We have been on the cutting edge of newly approved medicines. There was one in particular that had so many awful, even deadly, side effects that I found myself sitting in the car in tears the day of her first infusion. The reality we found with all of them was, thought they might have helped stave off her aggressive disease a bit ,it was not enough.
We have learned to “put our armor on”. This is a useful part of our attire as we approach the next step on our medication journey. We no longer feel overly hopeful or excited, our armor is in place. The “next med” becomes a logical decision, and the emotions are put on hold as we evaluate potential benefits and risks.
Having become supremely aware that each person’s disease is unique we realize that we have no idea what will finally put her disease in remission. Giving up is not an option, so we continue to pray and move forward with our doctors in search of the next thing in her not so normal life.