processing

In high school I played volleyball. Before big games our coach would have us visualize the best possible game we could play. She had us imagine the perfect pass, set, hit. She had us visualize the win. This exercise is helpful now as we process the ACTA2 diagnosis.

Evan and I talked the other night about how we were both processing this new life we've been inducted into. He said he doesn't know how or even if he is processing it. He thinks about it, we talk about it, but processing? Not sure.

For my part, processing involves a creative imagination and visualization of the possible future realities we'll face: waking up to find Iris has had a stroke; getting the news that her intestines are malrotated or that she has gallstones; waiting while she has any number of surgeries on any number of body parts; talking to her about how she can decide for herself what will make her life meaningful; walking, lots of walking outdoors. The more we imagine, the more prepared we will be to respond to the worst of it without panic. Evan liked this idea and said it made him feel better about what he worried might have been just zoning out. 

Processing also involves research and finding others like Iris. I've started doing a literature review on all ACTA2 r179 articles. I've joined a Facebook group specifically for those with her mutation. Evan and I both have considered getting tattoos in honor of Iris. This was something we came to independently.

I'm equally concerned with Iris's physical well-being as I am with her (and our) emotional and spiritual well-being. I'm sorry to admit that we spend far too much time talking about medical issues in front of her. I'd much rather shield her from those conversations at this point and instead focus on fun. Evan has said this in passing a few times -- usually referring to our need for a date night -- that we need to have more fun.

We (or I) have amassed a slew of items to help us figure out how to forge ahead. One of those is a TED talk by Andrew Solomon, who talks about how the worst moments of our lives help make us who we are. His talk is beautifully inspired.