The Simple Rhythm of Our Life

As is the nature of our lives as summer approaches we are slowing down quite a bit. School work is going to be dropped down to 2 days a week through most of the summer so that the kids do not lose what they have learned. Soccer is coming to a close and life, in this house anyway, is about the basics: good food, family time, the lake, chores, schoolwork, friends, and fun. Our days are becoming more meaningful, at least to me, as I purposefully choose what we do each day. I feel happier than I have felt in a long time as the lazy days of summer approach. The quiet rhythms that are becoming routine around here are soothing to my soul, and I am finding myself more at peace than I have been in a while.

Bob, Sarah, and I met with the head of neurology at Akron Children's yesterday. This new doctor is taking on Sarah' case, and will be working alongside Dr. Rensel (he actually trained Dr. Rensel back in the day!) to give Sarah the best care possible. Between his ideas and knowledge, Dr. Locastro's ideas and knowledge, and Dr. Rensel's ideas knowledge I feel more comfortable than I have ever felt that Sarah has the right team taking care of her. I asked Dr. Cohen why he took Sarah's case on when all of the other neurologists at Akron Children's passed on caring for her. He told me that they passed on caring for her because her case is rare among NMO cases. She is an outlier and only he felt comfortable taking her case on based on the fact that he has been a doctor for the past 30+ years. He mentioned that most of the neurologists have had no experience with the type of treatments Sarah requires and they did not want to tackle such an extremely difficult case without any experience. This makes sense to me, but I am still not happy with the way that some of these doctors went about communicating their desire to not treat Sarah.  He seemed extremely knowledgeable, and I know that she is in the right hands.

As for Sarah, she is not doing well again. Yesterday she told me that she could not see out of her right eye very well and that everything is brown and distorted. Her left eye is blurry again as well. She wants to wait it out before calling Dr. Rensel and Dr. Cohen because she feels that the vision issues might be related to her being over tired yesterday. I want to believe that this is the case, but I know better. So, as we try to always do, we are honoring her request to hold off notifying her doctors. Life is really hard, but I just keep reminding myself that someone else always has it harder.

Even with everything going on with Sarah I still find comfort and peace in our days. Life is becoming so much more simple without having to run here and there and everywhere. Even our weekends are open which is such a gift. Despite all that is going on with Sarah, I love our life right now. I am determined to grow this rhythm and make it our own on a more permanent basis instead of just something that comes upon us as summer approaches.