Sixteen Years of Monster Life

Sixteen years ago today, everything changed. I mean, nothing changed, but everything changed. Schuyler was diagnosed with polymicrogyria on this day in 2003.I think back to that day sometimes, a day that I described in the prologue to my book. In a lot of ways, it marked an end to the person I was at the time, probably a lot more fun but also more selfish and seriously lacking in self-reflection. It also began my transition to the person I am now: smarter, more sensitive to the people around me, more socially aware and a stronger advocate, but also more cynical, more curmudgeonly, a bit of a scold and a wet blanket, and like every single special needs parent I know, poor (the only special needs parents who have a little money are the ones that started off with a LOT of money) and tired. Face more lined, body more worn, bank account less robust. Disability parenting is rewarding, and I wouldn ’t trade my life with Schuyler for anything. But it puts miles on you, and they are city miles at that.I ’m writing about how that day changed me because mine is the story I can tell. What did it mean for Schuyler? She doesn’t remember it, of course. She was three years old, after all. Her little monster has been with her from birth and before, of course, but it’s also been a known adversary for as long as she can remember. For Schuyler, an accurate diagnosis meant a corrected and appropriate course set for her future. School, medical evaluation and treatment, therapy, l...
Source: Schuyler's Monster: The Blog - Category: Disability Authors: Source Type: blogs