November 29, 2013

The Uncertain Season

Schuyler decorated our tree this year. I can remember a time, roughly a week ago, when she was a small child who would have only reached the bottom branches. Two weeks ago, I believe she was a baby and would have been putting the ornaments in her mouth. Schuyler turns fourteen in a few weeks. Just typing that out felt weird, as if I'm lying to you. Well, of course I am. Little girls aren't fourteen. Babies aren't taller than their mothers.

It's been a strange week for Schuyler. She had an MRI a few days ago, but apparently she wiggled too much, despite her best efforts to hold still, so she has another one next week, under sedation. I'm not sure what her doctor is looking for, if anything. He may simply be looking for an updated picture of what's going on in there. So much of Schuyler's world feels uncertain. I guess it's always been that way.

Schuyler has begun taking her anti-seizure meds, starting at 1/6th of her eventual dosage. It's hard to say what effect, if any, they've had on her. In five weeks or so, she'll be on her full dose, and then look out. For now, she takes her brain pills willingly. It's hard to say whether her behavior is slightly more squirrelly than before because of her meds, or if she's just a girl on her Thanksgiving break, enjoying the world around her with a little extra gusto. I suspect the latter.

Schuyler's broken, beautiful brain will adjust and find its groove, and so will she. Schuyler is wildly interesting at this age, in ways that are kind of new. We talk about big things, like her unpredictable brain and how the planets do their thing and why she believes in monsters but not God.

The future feels more opaque than ever. At this time of year, however, that mystery seems to hold less menace and more of something that feels a little like hope.


Sophie's Trains said...

I for one would be very interested to hear what the MRI will show at 14. Schuyler seems to be the closest to Sophie out of all the other PMG kids I've met in terms of brain damage extent and level of disability (due to pmg, Sophie autism is another story). She is also the oldest kid I know of with the same malformation. So inevitably I look to her as a sort of crystal ball into Sophie's future- with a grain of salt of course. Always rooting for you guys.

Sydney Lou Fry said...

Keeping all of you in my thoughts, as always. xo

Sydney Lou Fry said...

Thinking of you as always. xo

Anonymous said...

Fourteen you say? Impossible. That means I have been following her story for about 12 years. Well, yes, that would be true. She has inspired, amazed and changed some of my perspectives - some very big ones in many positive ways. I look at pictures of her, read her stories and think, every single time, she is a living miracle. An enigma of sorts. I have no special needs child (no children at all due to meds that I take - one of them being Lamictal) but I would like to think that this fourteen year old woman had some part in my current pursuit of working with special needs children (no money for a degree so I happily volunteer), specifically the autistic.

Rob, this is an uncertain season for all of us. Having struggled with mental illnesses much bigger than I ever imagined they would be in my life. But Schuylers's continued will and strength and embracing of her monsters and their place in her life (and your telling of said monsters place) has, believe it or not, helped me to embrace my very different monsters. For that I am thankful this uncertain holiday season.