Fluid. Flexible. Malleable. Predictably unpredictable. These are a few of the words and phrases we use almost daily to describe the season we are in.
Over the last 13 years of living life in Kenya, I’ve often experienced the need to leave room for “my plans” to be interrupted and have grown accustomed to being flexible, but this journey is a whole new level of trust. I am learning, as never before, how to live with open hands. This is not apathy or resignation. There is a process of discerning when to fight and take a step back. And all the time, my whole heart is required.
On the evening of Halloween, Ryan was discharged from the hospital, allowing us to spend a few days at home together as a family as we prepared for him to start chemotherapy on Monday. The kids played at the park, read books, watched movies, made art. One of the beautiful pieces of our story right now is the family we live with, the Herberts’. They are generously kind and welcoming. Because of us, their lives have also become more fluid and unpredictable. For all of the adjustments they have made to help care for us, we are unbelievably grateful.
Micah, the Herberts’ 17 year old son, is a senior in high school. Monday through Friday, a group of 10-15 of his friends, who we refer to as “the high-schoolers,” come to the house and play with our kids. As a mom, it is wonderful to watch the interactions taking place, the joy that, while surprising, seems to be mutual. This past Saturday evening was “the high-schoolers” winter formal dance for their school, and our kids were invited to a before party to celebrate with their new friends. They were all dressed up and adorable. It was a delightful evening.
On Monday morning, Baba Micah, Geoffrey and I headed down to UCLA at 5:45 for Geoffrey’s MRI of his brain, CT scan of his chest and blood transfusion. It was a long day for him, but Geoffrey is unbelievably resilient. Mama Micah, Titus and Ryan came down later in the day to admit Ryan to begin his chemotherapy. When he arrived and was reviewed by the transplant team, it was decided to delay Ryan’s admission until Sunday, the 12th; because of his cold-like symptoms. Even as I am writing this, the transplant coordinator just called to say admission will be delayed again until the 19th due to some lab results that came back today…
It feels disappointing, but it seems healing cannot be rushed. And so we wait and pray. We celebrate life every opportunity we get, and hope for the day when our boys will be freed from sickle cell.