Earlier in the summer I wrote about courage and whether Evan and I have been courageous in coping with Iris's diagnosis. I was struggling to figure out what the appropriate actions were for us to take in the face of the pretty gloomy prognosis. I considered quitting my job and quitting my dissertation to focus on being a mom and on raising money for research on the ACTA2 mutation and pediatric strokes. It's easy to find purpose in life when faced with what seems like a constant life or death situation. Your purpose becomes life. It's that simple and that complicated.
As the year has worn on I've continued to struggle with what my next steps should be. I've come to the conclusion not to make any drastic changes. I was a small signature away from quitting my dissertation altogether and somehow I've made the decision to keep going on it, same with my job. If I have to come up with a logical justification for it, I guess it would be: I don't want Iris's genetic mutation to become the most important thing in our lives. It is always going to play a leading role, but I don't want it to be the only thing that we do and the only thing we are about.
Back when we first got her diagnosis - not even a year ago - we decided that we wanted to focus on making her life (and our lives) meaningful and always to emphasize the idea that a long life does not equate to a meaningful life.
The most meaningful thing I think I can do for myself and for my family is to cultivate and spread opportunities for joy. This state of being has almost nothing to do with what we do or do not accomplish; instead, it has everything to do with our perspective and what we choose to surround ourselves with.
With that in mind, I want our lives to be as ordinary as possible and I want for us to find joy in the ordinary.
As the year has worn on I've continued to struggle with what my next steps should be. I've come to the conclusion not to make any drastic changes. I was a small signature away from quitting my dissertation altogether and somehow I've made the decision to keep going on it, same with my job. If I have to come up with a logical justification for it, I guess it would be: I don't want Iris's genetic mutation to become the most important thing in our lives. It is always going to play a leading role, but I don't want it to be the only thing that we do and the only thing we are about.
Back when we first got her diagnosis - not even a year ago - we decided that we wanted to focus on making her life (and our lives) meaningful and always to emphasize the idea that a long life does not equate to a meaningful life.
The most meaningful thing I think I can do for myself and for my family is to cultivate and spread opportunities for joy. This state of being has almost nothing to do with what we do or do not accomplish; instead, it has everything to do with our perspective and what we choose to surround ourselves with.
With that in mind, I want our lives to be as ordinary as possible and I want for us to find joy in the ordinary.
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