One of the unexpected pleasures of Michael's baseball season was getting to know the head coach and his son. When Jack Zembsch entered first-grade last fall, his parents sent an open letter out to the school to introduce Jack and let everyone know how to deal with him. Jack has Metatrophic Dysplasia, a rare dwarfism condition that involves, among other things, very soft vertebrae. The extreme curvature of Jack's spine, coupled with his frame's small stature as a result of the underlying dwarfism, threaten his life because his internal organs will not have enough room to grow.
Jack is very small and hunched over, but he has more spirit and optimism in just about any little kid you could ever hope to meet. Jack did not have enough mobility to do much in the field, but at the plate, he was surprisingly effective. Playing in a division where simply fielding, throwing and catching a ball is a challenge for most of the players, Jack regularly hit the ball pitched to him and made it to first base safely. In our last game on Saturday, Jack went three for four, completely legitimately, with no mercy shown by the other team (not that either Jack or his parents would want any).
Jack's parents engaged in a long fight with their health insurer to allow them access to the only expert on this condition in the country, who happens to be in Delaware. Stories about their efforts, including at least one published California court case, can be found online. Thankfully, they prevailed in their fight, and the day after our last game Jack and his family flew back to Delaware to begin a series of surgeries that will take all summer and will, if successful, substantially improve his quality of life and extend his life expectancy. We just received word that he made it through his first surgery today in good shape.
Jack's parents are fierce advocates on his behalf, and have done everything they can to allow him to lead as normal a life as possible. They are very open about Jack's condition, which allows those who come in contact with him to be at ease with him.
Jack makes it easy to like him; he is enthusiastic and funny, and yet still just as silly as other boys his age. Thanks to his parents and his own will, Jack participates in all the things that little boys do, and the other boys love him for it.
I felt a lot of pride in Michael's new love for the game of baseball and his proficiency in playing it this season. Beyond that, though, my best memories of this season will be of coaching Jack, watching him improbably hit a waffle ball 40 feet out of his tiny, stooped crouch, and carrying him on my shoulders cross the field from our wiffle ball station to the main diamond when our drills were done.
Jack has a lot of people pulling for him now. It's going to be a long, painful summer for him, but he's going to have a new body for his new school year. The doctors are working on his frame, but they don't need to change anything about who he is inside.
No comments:
Post a Comment