This is my friend, Jenn, and her son, Michael. On a very happy day one Christmas season about four years ago. I snapped this photo of them while we were at a cookie decorating party. Just one picture of many that I would take that day. Our kids were smaller then, and we had just begun our friendship. I couldn't have known at the time how much this girl would come to mean to me and couldn't have know that our boys would become good friends, too. I had never heard of hypoplastic right heart syndrome at the time. I didn't know that much about them, meeting Jenn and Michael through our mutual friend, Kim. But over time, we developed a friendship of our own and I learned through his mother about Michael's condition. It was always so amazing to me that Michael was just Michael and you couldn't ever tell that he had a "syndrome." He was just a normal kid. And very funny. Quirky. Creative. Like his Mom. He and Jack had a lot in common. Big imaginations, those two. Lots of creative play. Unstructured and all in their minds. When we spent some alone time together with them last summer and the summer before I thought it was really great how compatible they were. So great, because I enjoyed Jenn so much. We would scrap book, the boys would play...Legos, Star Wars, Bakugon and army men (Jack reminds me as he looks over my shoulder and interjects as I'm typing). The last time we saw them was in February. The four of us met for breakfast. The boys brought their toys. We ate, they played. We laughed about them, they were very into their "game." I think the army men and the Bakugon were at war that morning. Michael was the picture of health. We had a great visit. And then we left.
My step-son is named Michael, too. And we would always get confused between the two Michaels so at one point when I said, "which Michael?" Jack said, "you know...Star Wars Michael!" And so the nickname stuck.
Star Wars Michael died this year on April 9th due to complications associated with hypoplastic right heart syndrome. And today is his tenth birthday. Today I am consumed with sadness for my friend. And for her family. For her loss. A loss I cannot begin to imagine. A loss I have to watch her experience, with little opportunity to provide any kind of true comfort. I am grieving today for her and for all that she will not share in the future with this little boy whom she loved so much. Today, I woke up and thought, "Well here it is. 7/1." And I prayed for Jenn.