courage, part II

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.

halloween

This was Iris's first legitimate Halloween. We did dress her up last year (as a dog) and passed candy out to the neighbors. She didn't understand why we were so excited to get her dressed up but when we showed her herself in the mirror she tolerated the costume a bit longer. Really, though, we didn't do much to celebrate. 

Iris as a dog in 2014

This year we had our housemates to lean on for Halloween oomph. Troy and the kids carved a pumpkin, which put us light years ahead of where we were in 2014.

Gutting the pumpkin

We also took Iris trick-or-treating this year, even though we're not going to let her have any of the candy winnings. She dressed up as a koala and genuinely enjoyed dressing up. She is at an age where she wants to be EXACTLY like everyone else and so it's easy to get her to dress up if everyone else is doing it too. I'm not sure I love this inclination, though it does help with potty training.

A koala, Snoopy, a sunflower, a zombie marshmallow, and a mermaid.

The day after Halloween we asked Iris what she remembered about going trick-or-treating. She said, "dogs." There was a dog that scared her at one house. I asked her if people gave her anything when she was at the houses and she didn't seem to remember the candy...we left it at that.