This post is written by Karen Brocker, my mom, about what it is like to have a daughter with a chronic illness.
When you live with a chronic disease you sometimes become accustomed to dealing with serious, even scary, health issues. This becomes your new normal and you learn to function as if everything were fine.
I find myself in a cycle of sorts…. something kind of big happens and I go into a function mode to deal with the immediate needs. I call the doctor, I pick up meds, I go to an appointment. I might even google the issue. Other than that, though, I am not thinking about it too much. I am fitting it into my schedule of tasks and everyday responsibilities.
The next phase of the cycle is that I go into an avoidance phase. I become a bit obsessed with a project. I may research vacation spots. I decorate. I wish I would exercise obsessively but I’m afraid that has not yet happened. I latch on to anything that provides a mental distraction from the stalking heaviness that threatens to overtake me.
Eventually, I come to a stand still, aware that my feelings have caught up with me and that it is time to deal with them. I may weep, cry out to God and even take a nap. The heaviness settles until it is dispersed by the quietness that comes with acceptance. I acknowledge the sorrow and the fear and then soldier on in this journey of my daughter’s not so normal life.