Today is the seventeenth anniversary of Schuyler's diagnosis of polymicrogyria.
There have been times in the past seventeen years when that felt like a thing to be memorialized, a great tragedy like a hurricane or an assassination, both of which feel like an appropriate description of how it felt to stand in the face of such an event and watch someone I loved taken away from me.
But over the years, I guess that's changed, or at least blunted. Schuyler wasn't taken away by her diagnosis. Her little monster didn't arrive that day; it merely stated its long-overdue "How do you do?" I thought I learned about the future that day, but all that really happened was I found out about a journey. Her diagnosis put coordinates into my emotional and spiritual GPS. It said nothing about the destination.
On this day of memory, of thinking back to that awful afternoon in the pediatrician's office at Yale as I saw that brain scan and Schuyler's unwelcome passenger for the first time, Schuyler goes back to work at KidZania and prepares to depart Texas for new adventures next month. Her little monster comes with her, of course, as it does everywhere and always will.
But the important thing for me is this: PMG comes with her, but it doesn't get to drive. And it doesn't get to define her, either. It wasn't that long ago that it felt like the thing that controlled her life.
Now? It's just a thing.
This feels like sorely needed good news, that Schuyler is launching into adulthood with her monster not the defining thing. Thank you for sharing it, and everything in your journey over the years, and the activism you and Schuyler have done and continue to do. I also see so much here you are not saying, the difficulty and fears for you as a parent, in this time of turmoil and uncertainty, supporting her growing independence. My hat is off to you and my heart goes out to you, Rob.
ReplyDeleteShe is such kid! It seems like yesterday that she was ‘the grub’.
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