Definition

chron·ic/ˈkränik/Adjective
1. (of an illness) Persisting for a long time or constantly recurring.
2. (of a person) Having such an illness

Above is the word I have been struggling with all day. One simple seven letter word. That word has become such a part of our life that I utter with ease and no thought. "Maggie and Ricky's primary immune deficiency is a chronic disease" So what does that really mean? I looked the definition up on google even though I already "knew" the meaning. Yup it is pretty right on about immune deficiencies. They do persist with constant infections that can last for weeks or even months.

So the question is not how to define the word but how to deal with being the second definition. Actually how to parent a child who fits the second definition listed above. The doctors have told me Maggie will probably feel sick for the time it takes them to decide what to do to help her. It could be a week, a couple weeks or even a month. Her pediatrician, who also has a pi, has even expressed the notion that she may feel sick a lot in her life.

This will be the challenge for Maggie and me. To learn to co-exist with this disease and live life on life terms is one of the goals. There will be many moments, possibly days, where she feels yucky and has to carry out her to-do-list. How she feels will be secondary to what she needs to accomplish. I already think she does this pretty well. I need to take a lesson from her on this.

The next step is to learn how to walk the line between what Maggie carries on with or when it is serious enough to warrant slowing down. That will be a harder task until she is older and better able to communicate with me. For now I have to listen to her concerns, observe her behavior and communicate with her doctors. Then I have to trust and listen to them.

Today we had to bow out of the family picnic. Someone had a new, fresh cold and I didn't want to risk complicating the situation with another virus. Then Maggie woke up with a fever and still dragging from our Saturday fun. I was disappointed and knew she would have loved to go. I had to err on the side of caution this time. Next time I may decide the social is more important. Either way I don't think there was a right or wrong answer.

The chronic part of the disease, the decision part of the disease and the trying to maintain balance part overwhelmed me today. I think that is all natural and part of this roller coaster of pi. What I had to do was talk about it and cry a bit. After a little cry I counted my blessings and reminded myself to stay in the moment. Tomorrow is another day and it will bring more choices and decisions. But that is tomorrow and for now I will just stay where I am!