Caring Bridge - August 21, 2019

Overall, things have been going well. Asher continues to maintain the same symptom levels - no better or worse. We’ve been carrying on much the same for over a month now. We’ve had the opportunity to simply be a family with few medical disruptions, and we’re so grateful for stability, and for the memories we’re making. Please pray that our primary attitude would be gratefulness.

In the category of “Things that Feel Normal, ” we’re preparing for Annelise to start kindergarten next week. Pray for wisdom for us, and a smooth transition as we begin to create new routines.

Asher loves to learn, and he competes with Leah for the top spot of “Most social person in the family.” So I think he’s lying to himself when he says he doesn’t really like school. I think he misses it, and when his sister starts school, I think it will make it worse. He asked Leah to create a “homeschool” routine for him that hits the highlights of the stuff he really loves: history and science., and he’s loving it so far. Pray that we can give him a school experience that is fulfilling to him. Pray that we can find space for him to socialize with his friends.

I confess that underneath all of the joy, in the quiet moments, I’ve had a sense of dread that has been difficult to shake. The presence of joy and stabilty has increased the contrast with what appears to be coming. We just crossed the 7-month mark, and it feels like the eye of a hurricane - the calm before the storm. I like the calm, and I don’t really want to leave it, but it’s not a door I can refuse to walk through.

Pray for us as we prepare. Pray for Leah as she handles the bulk of Asher’s care during the weekdays. Pray for Asher and I as I will need to finish having an advance directive conversation with him (i.e. what the patients desires are when they can’t communicate those desires). Pray for Annelise as she takes on such drastic life change and circumstances at five years old.

Thank you for continuing to pray for us.