A Day of Note

There were two notable things about yesterday. It marked the ten year anniversary of Schuyler's diagnosis for bilateral perisylvian polymicrogyria. It was the day we received all the gloom and despair prognostications for her future. And yesterday was the last day of her cheer camp, in which she performed with her middle school's eighth grade cheerleading squad, along with hundreds of other girls from other schools. Almost all of them neurotypical, and almost all of them indistinguishable from Schuyler in their demeanor, behavior and performances. These two notable things have nothing to do with each other.These two notable things have everything in the world to do with each other. I can recall everything about that day in 2003. I remember how beautiful the weather was, a perfect Connecticut summer day, and how insulted I felt by this. It would have been entirely appropriate to find dark clouds hanging low over the Yale campus where Schuyler's doctors had just delivered the news to us. The news, and the future. Schuyler's brain was profoundly malformed, perhaps as much as 75% of it. She would probably never talk, or write. She would most likely be severely mentally retarded (a term that was still kicked around by professionals at that time). She would almost certainly have dangerous seizures, probably beginning in the next few years. She could require a severely restricted diet, possibly even a mostly liquid intake. And her fine motor skills would be severely impaired for the...

Source: Schuyler's Monster: The Blog - August 1, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs