“Back to normal” meant that Sarah would be well, able to attend school and do all her extra curricular activities. Gone would be the many doctors visits, new meds and stomach pains that we were currently dealing with. Up to that point in time, my experience with illness had consisted of a reliable pattern of being sick, going to the doctor, getting an anti-biotic and feeling better within a few days. It did not initially dawn on me that having a chronic disease meant that it never really went away!
Fast forward thru her highschool years, 2 trips to mayo clininc, one surgery and numerous hospital stays and I still found myself thinking “next year, when she is better, she can live in the sorority house…. Or go to Europe to study abroad…. Or – fill in the blank of whatever a normal college student might do.” It gradually dawned on me that “next year” might not be better.
While this involved some grieving on my part- it also allowed me to accept and appreciate the present moment. I don’t spend much of my time thinking about the future anymore. I find that the present gives me enough challenges and joy to keep me busy.
I also find myself surprised at what has become normal. It is routine to see full sharps containers around our house needing to be taken to the disposal site. Normal to open the refrigerator to find thousands of dollars worth of intravenous feedings. Almost comforting to listen to the quiet beep of her IV pump at night when she is at home.
While a part of me is sad that we have become so used to medical interventions I am thankful at the ease at with which she has adapted and accepted these intrusions on her life. They have become our “new normal”.