December 31, 2008

"And next year's words await another voice..."

Originally uploaded by Citizen Rob
I haven't done one of those end-of-the-year wrap-ups for a long time, mostly because I think they are usually more interesting to write than to actually read. It's probably like hearing about someone's dreams, except worse, because if you've been reading for at least a year, you end up thinking "Yeah, I know, I was there for that."

But I don't know, this year feels different. 2008 certainly feels more deserving of a self-indulgent recap, as all personal blog annual recaps are required to be, by law. I believe it's a federal law.

For me personally, it was obviously a significant year, and not just because I was thirty-ten and still inexplicably alive. 2008 was the year that I was published. A book. A real, hardcover, not-printed-at-Kinko's, gigantic New York publishing house, "fuck you, trees" book. I did all that work, I wrote 90,000 words that someone wanted to publish, I went through an editing process that was deceptively painless, and one day a box arrived at my apartment that contained something that no one can ever take away from me now. Last week, ending the year, I received another, similar box, this time with paperback copies of this thing that I did, this thing that seems so unlikely even now.

It was never what I set out to do. I never dreamed that I would get picked up by St. Martin's Press, or that I would see my words published in Good Housekeeping or Wondertime. I never expected to get reviewed in People, or to be featured in newspaper articles or on public radio. I certainly never expected to go on television, in interviews that I loved and others that, well, not so much, and in ones where I talked about my faith, something that I rarely do privately, much less for a live television audience. I didn't write the book so I could give big fancy speeches or return to my college as something besides assistant manager at Kentucky Fried Chicken, and I certainly never anticipated being the guest lecturer at a university. I never thought it would reach this level of fancy pantsedness. I even bought a suit.

I have loved every moment of it, and it has been an incredible adventure, one that I don't expect will repeat itself, no matter what I publish in the future. It's been amazing mostly because my family has been along for the ride. I'm not sure how much Julie enjoys living in the light now, although she's been fantastic about the whole thing, but for Schuyler, it's been an amazing trip. She's developed into an even more confident and sociable little girl, if that's possible.

More importantly, I believe the attention from the book has shown Schuyler that she really is unique and different, but far from being a freak, she's a rare creature of beauty and spark. She knows she's broken, but she's also learning that people love her not just despite that, but because of how she deals with it. She understands that she has a monster; suggesting or pretending otherwise is an insult to her, as far as I'm concerned. But because of the book and the attention she's received from it, I like to believe that she also sees that it is in taming that monster and making it small that she has become her own kind of perfect.

And that's really why I wrote the book, and why I wanted to get it out in the world, even if it had only sold 500 copies and gotten remaindered in six months.  (Note: It's doing a little better than that, I'm happy to report.)  It was my love letter to Schuyler. It was my insurance policy, the thing that would stand for me if I ever got hit by a bus or killed by internet stalkers. She will always have the book, and so in that respect, 2008 was the best year of my life with Schuyler. No matter what, she'll always have that, and will always know what she meant to me, and how much I admire her.

This was a good year for me for making new friends and reconnecting with old ones, mostly because of the book. It hasn't been perfect, of course. I believe resentment is probably responsible for finally killing off at least one friendship, albeit one that was admittedly on tottering legs anyway. I think that's too bad; it's not as if I took someone else's shot at publication away in achieving mine. But for the most part, I've met some really amazing writers over the past year, and I've reconnected with old friends from high school who saw the articles in People and Good Housekeeping. (And just why are people my age reading Good Housekeeping, anyway? Oh, yeah, we're the target demographic now. Time, you suck.) Best of all, I've watched some old but casual friendships deepen and flourish. My friendships are a little like a garden, I suppose. The weeding's not much fun, but it's the new blossoms that take my breath away and remind me of what's good in the world.

I have no idea what to expect from 2009. The year begins with the paperback release of my book, but the day before, it also sees Schuyler's return to the world of doctors and specialists and questions. The other day, Julie very quietly said, "I think Schuyler's PMG is starting to manifest itself more," and I think she might be right. We've both seen more of her little spells, and she's starting to have a slight increase in difficulties with her fine motor skills. She's only signing with her left hand now, for example, and her handwriting seems to be challenging her a little more, too. If I had to sit down and face this thing head-on, I might be forced to admit that when I think of this new year, I am filled with a dread, a persistent feeling that something's coming, and not something nice. I'm Schuyler's father, and I'm prone to considering all the worst-case scenarios, I know. But I also know Schuyler, better than anyone else in the world save one. When she starts to experience changes, we see it. I think we've already done more than enough to convince the world that we know what we're talking about, and yet I suspect we're about to be right back in that swamp again, the one where we're the idiot parents and someone else is The Expert. This time, I think we'll be ready.

Most of all, however, I think that no matter how rough 2009 might turn out to be or how big the monster grows, once again it will be Schuyler who will show me the way. She continues to be the strong one, and the smart one, and most of all the tenacious fighter. I see the monster again after so much quiet time, and I despair. Schuyler sees an ass that she needs to cheerfully kick. That will always be the difference between us, and perhaps it's the way it's supposed to be.

I think about that a lot. How Things Are Supposed To Be. I've never thought this was it, of course. So many people see Schuyler through their own prism, and so she becomes and angel or a savior or whatever she needs to be for them. As she steps into a new year as a nine year-old, Schuyler is everything she is perceived to be, and much more. She's a broken yet priceless doll, sadly incomplete and yet more perfect and beautiful because of it. She's an otherworldly being who speaks in a beautiful but foreign tongue, but she's also the quintessential nine year-old girl who lives in Chuck Taylors and wants to be Kim Possible. She's a chaotic tornado of energy who bristles at authority and thrives on change. Schuyler doesn't need anyone to teach her about God or Jesus or anyone else who has failed her, and yet she's a child of God, like the rest of us. She's a child who deserves an explanation from that Divine Bully, but to whom it will probably never even occur to ask.

As the new year dawns, it's Schuyler whom I'll be watching, and following, and if she can make her way through this grand rough world, one that both fails her and thrills her at ever turn, then I suppose the rest of us can, too.

Besides, she's the only person who likes my moustache, even if just as an object of amusement.

For last year's words belong to last year's language
And next year's words await another voice.
And to make an end is to make a beginning.
~T.S. Eliot

December 24, 2008

"Hoping it might be so..."

It being Christmas Eve, Schuyler and I went to see Santa this afternoon. This year, we continued our streak of good Santas. After she sat down with him and introduced herself with her device, Schuyler handed him her carefully handwritten note, which he was actually able to decipher. They spoke softly for a while (he reminded her to leave him some cookies, and then flashed me a quick smile as if to say "Dude, you owe me one"), and then, as she was getting up to leave, he held up his hand and stopped her.

"Now, Schuyler," Santa said, "because you've been so good this year, and because you're such a unique little girl, I'm going to give you something that no other child is getting today." He reached down into a chest next to his chair and pulled out a large red sleighbell, ala Polar Express. He gave it to her and then whispered something in her ear. She smiled hugely and hopped away, ringing her little bell.

As we left the little stage area, I saw one of the helpers watching the whole scene. She was actually crying a little, and when she saw me looking at her, she smiled at me and wiped her eyes. "I'm sorry, she said, "but that was just so sweet! He hasn't done that for anyone else that I know of."

As we left, Schuyler was obsessed with the bell. She rang it and peered at it carefully. She seemed to be working something out in her head. Finally she said, "Daddy?"

I looked down at her. "Why?" she asked, indicating the bell.

"Why did Santa give that to you, and no one else?" I asked, making sure I understood the question. She nodded. I thought about it for a moment.

"Well, Santa said you were 'unique'. That means there's not another little girl in the whole world like you, and that's true. Did you know there's no one else anywhere who talks like you do, Schuyler?"

"Really?" she asked.

"Really. That's why you have to use your device to tell us all things. Your words are so special that no one else is smart enough to understand them. That's why he called you 'unique'. You're the most special little girl in the world. There's only one Schuyler anywhere, and I've got you. That makes me pretty unique, too."

She liked that answer.

I know my answer sort of flies in the face of what I'm always saying, about how I don't like People First Language because it sugarcoats disability and blinks when facing the monster head on. But I don't know, I guess on Christmas Eve of all days, I permit myself to believe that perhaps Schuyler's strange words aren't necessarily broken, but from some other world that I'll never be able to visit but which, through her, I get to glimpse.

In 1 Corinthians, St. Paul describes the tongues of angels, unintelligible to us. Maybe, just maybe, this is what he meant. On today of all days, even in my deeply held agnosticism, I'm like Thomas Hardy in his poem "The Oxen". I'm not inclined to believe in miracles, but that doesn't mean I don't pay attention to the things around me, like Schuyler, that sometimes seem miraculous.

I don't necessarily believe, but sometimes I hope, and that might just be enough.

The Oxen

Christmas Eve, and twelve of the clock,
"Now they are all on their knees",
An elder said as we sat in a flock
By the embers in hearthside ease.

We pictured the meek mild creatures where
They dwelt in their strawy pen,
Nor did it occur to one of us there
To doubt they were kneeling then.

So fair a fancy few would weave
In these years! Yet, I feel,
If someone said on Christmas Eve,
"Come; see the oxen kneel

"In the lonely barton by yonder coomb
Our childhood used to know",
I should go with him in the gloom,
Hoping it might be so.

-- Thomas Hardy

A good review from some brain people

Schuyler's Brain
Originally uploaded by Citizen Rob
An article about Schuyler's Monster appeared in the December 18, 2008 edition of Neurology Today, a publication of the American Academy of Neurology. It's a positive review and analysis of the book and its place in the ongoing discussion of the complicated relationship between physicians and the patients in their care.

The article, by Mary Jo Harbert, MD and Doris Trauner, MD, is titled "What We As Physicians Can Learn From Our Patients". The thing I like about this article is that it comes from a new perspective for me. This article is written by, and for, neurologists and physicians, and getting their stamp of approval means a great deal to me. More importantly, Drs. Harbert and Trauner understand one of the more important points I was hoping to make with the book.
"For doctors, this book reminds us that children with developmental disabilities also need to be challenged, just as neurotypical children do, so that they can maximize their potential."
That makes me happy.

December 18, 2008


This Sunday is Schuyler's ninth birthday. Yeah, that's right. Nine. I'm not sure how that happened. I still remember her as a little baby, all fat and hairy and weird. At some point, someone replaced her with a little girl. I'd like an explanation for that, because it has left me feeling quite befuddled.

Anyway, instead of more deep dark scary talk about the monster, I thought I'd share some random observations about Schuyler, in no particular order and not of any earth-shattering importance. Really, I just like thinking about all the weird little things she does. She's a weird kid, "my weird and wondrous monster-slayer", as I call her in the dedication of my book.

So, some quick facts about Schuyler, at nine:


Schuyler still loves fairies and dinosaurs and mermaids. She likes princesses, but her favorite book right now is about princesses who kick ass in various nontraditional ways, so I'm not too worried.

Schuyler's brief interest in Hannah Montana appears to be over.

Schuyler's Martian is becoming easier to understand, and yet, there are still intriguing gaps. When she sees a Mini Cooper, for example, she gets excited (she got accustomed to watching for them back when I was going to get one over the summer), and she points and says "Mini!" But it doesn't sound like "mini", not even close. It's a word that she gets the vowels wrong on, too. Martian is a more complicated language than I thought, apparently.

Schuyler can go on a six hour car ride with me, and the return ride a few days later, without a word of complaint. As long as I play my cool "Atomo Mix" in the car, she's all good. But only if I start with the Ali Dee and The Deekompressors version of the Speed Racer theme.

Schuyler is now 4 feet, five inches tall. When the nurse told us that, I thought it had to be a mistake. Babies aren't that tall. I am clearly not dealing well with the passage of time.

For all her height, Schuyler only weighs sixty-eight pounds. She is all arms, legs, ears and front teeth. And giant hypnotic eyes. She's like an anime character.

Schuyler's lost glasses mysteriously appeared in the teacher's lounge at her school a few weeks after they vanished.  They were even still in the case.  Not sure what to make of that.  We decided just to accept it as a gift from the universe and move on.

Schuyler's love of Chuck Taylors has not abated at all.

Schuyler is now wearing women's size six shoes. She is one shoe size behind her mother now. Adult sized Chuck Taylors are twice as expensive as the identical kid sizes.

Schuyler makes up names for her toy friends, names that are strange and kind of wonderful. Her new triceratops from the Field Museum, for example, is named Yliksa. At first I thought she was just randomly stringing letters together, but no. When quizzed about it repeatedly, she always gets the spelling the same, and gets upset if we get it wrong. I sometimes wonder if these are popular names on Mars.

Schuyler loves soccer and baseball, but hates football so much that she boos when she sees it on tv or being played by other kids. I'm pretty sure she does that for my benefit. She is truly a coach's grand-daughter.

Schuyler met a friend of mine via videoconferencing a few weeks ago, and now refers to my "friend in the computer". She's going to lose her mind when they meet in person in a few weeks.

When she signs books now, Schuyler has taken to writing things like "Love, Schuyler!" (Always with the exclamation point.) It slows down the line at book signings, but I don't think anyone minds.

If you can catch her without her noticing, Schuyler is an amazing and beautiful photographic subject. If you ask her to smile, however, she will squint and make what she thinks is a smile but which looks more like a pained grimace. It looks more like a painful pooping face than a smile. For two years in a row, the school photographer has apparently told her to smile.

Schuyler still spots police cars for me. "The fuzz! The fuzz!"

If Schuyler turns out to be having seizures, we'll have to get rid of her cool loft bed. It would be far too difficult for one of us to get up to her if she had a seizure up there. I'm not sure why, but lately, this is the thing that has been making me the saddest about the possibility of seizures.

Schuyler will try any food, and she's not afraid of spicy things.

Schuyler is transfixed by ballet. She was watching the San Francisco Ballet's Nutcracker on tv, and you would have thought there were dinosaurs, eating princesses and chocolate ice cream at the Purple Cow. She was mesmerized. Afterwards, she danced around on her toes for the rest of the night.

Schuyler lost that little kid belly that she always had when she was young, the one that all little kids have. She is tall and slender and has an actual girl butt. I find this to be very troubling, and it only gets worse from here on out.

Schuyler did a paper on leopards this semester. She presented it while wearing a leopard print skirt that she picked out herself for the occasion.

Schuyler picks almost all her own clothes. She puts the outfits together, too, although we exercise veto rights. Well, you would, too.

Schuyler and my mother have a very close and sort of wordless bond that is unlike any other in her life. It's hard to describe, but it makes me happy.

When Schuyler looks sad, she looks like my grandmother, who has the saddest story in all my family. But she doesn't look sad very often.

Schuyler loves babies. She would have been an amazing big sister.

Schuyler is my best friend and the finest daughter a father could ever dream of having. I'm not sure where she comes from and what that other world is like, the one that she visits us from, but I'm inexpressibly happy that she spends time in my world, too.

Happy birthday, Chubbin.

December 15, 2008

Monster hunt

Originally uploaded by Citizen Rob
In real life, events do not wait for the proper moments in perfect chapter order.

There are really two things going on right now that are taking most of my attention. On one hand, my book will be released in trade paperback on January 6th, followed shortly by new author appearances at a number of locations. For the paperback, I'm trying to focus on independent bookstores and want to visit different parts of the country where so many of you who have asked might actually be able to attend. (I'm looking at you, San Francisco.) Two days after the book release, I'll be at the amazing new Legacy Books here in Plano.

(If you live in the area, you should really come. The store is huge and beautiful and has a liquor license. And as an additional bonus, my lovely friend Monique van den Berg will be there. She's an exceptional and popular writer who was kind enough to contribute study guide questions for the paperback edition of Schuyler's Monster. I suspect that between Monique and Schuyler, I will be the third biggest audience draw to my own signing. I can live with that.)

So that's the week of the paperback release.

The day before the book release, Schuyler has an EEG, to determine if she is having absence seizures.

Okay, so let's talk about the seizures.

The test itself should be interesting. It's called a "Sleep Deprived EEG", and that's exactly what it is. The night before, Schuyler is not allowed to sleep more than four hours (and preferably not at all), which of course means that someone will have to stay up with her. Given my regular insomnia, the job will fall to me. Julie will sleep and be ready to do all the driving (and listening, and thinking, really) the next day, and I will be up with Schuyler all night, probably watching monster movies and whatever else I can think of. When she's a zombie the next day, I'll be there with her, hungering for brains.

The next morning, neurologists will glue little sensors all over Schuyler's head, flash some lights in her face and then send her off to sleep for an hour or so. The idea is that the lack of sleep and the fancy light show will trigger seizures that will then be recorded by the EEG. (Remind me to add Speed Racer to the all-night film line-up; it's one of her favorites, and if anything will trigger seizures, it's that movie.)

The problem with this test is that it can only prove a positive, not provide a conclusive negative. If she has a seizure during that hour or so, then we know she's having them. But if not, all it means is that she didn't have a seizure during that time period. After that, if nothing was seen, I believe the next step is an ambulatory EEG, in which she is wired up to a portable sensor unit like a little laboratory capuchin monkey and sent into the gawking world for twenty-four hours. I have no doubt that Schuyler would love that. She flies her freak flag higher and more proudly than anyone I know.

So that's what's next. If there's a little monster waiting, we will flush it out. Well, I shouldn't be overly dramatic about this. We don't actually know that she's even having absence seizures at all. She turns nine this coming Sunday, after all; there's a condition that that causes an inability to focus that many nine-year-olds suffer from. It's called being nine.

There are people who are very close to Schuyler and should know better who are perhaps in bit of denial about the possibility that she's having seizures. I understand that impulse, I understand it completely; I'm fighting it myself. There's a numbers reality here, however. We've known for five years that Schuyler had a ninety percent chance of developing seizures, and ninety percent is pretty high.

That means that in a world population of -- what, almost seven billion people? -- there are maybe a thousand that suffer from bilateral perisylvian polymicrogyria. So really, what we're hoping for is that Schuyler is going to randomly join a group of about a hundred people in all the world, the ones with BPP but no seizures.

I'd love to think that could happen, and it absolutely can, but still, you know? Julie and I talked about this the other night, and we were a little surprised to find that both of us had a secret, shameful wish. We both confessed, almost in a jinxy, simultaneous way, that we were both sort of hoping, maybe just a little, that Schuyler's EEG comes back positive.

I know, that sounds wrong. It feels wrong, really, but there's a harsh reality behind that wish. If Schuyler's EEG comes back negative, and the subsequent battery of tests also show that she's not having absence seizures but is just a spacey little kid, that's good news. It means she still has a chance to be one of that hundred.

But if you are willing and you are capable of looking the statistical reality in the face, then what a negative EEG most likely means for Schuyler, and for us, is a return to the waiting game. In my head, I envision us grabbing a magazine and the tv remote, scooting our cool red couch back under the swinging Sword of Damocles and sitting again. Waiting.

If that monster is coming, we're tired of waiting for it. Get your ass here already so we can go to work.

December 11, 2008

My fancy pants are made of paper

Available in trade paperback January 6, 2009

St. Martin’s Griffin
ISBN: 978-0-312-53880-4
ISBN-10: 0-312-53880-4
288 pages

Author appearances:
Thursday, January 8, 2009 - 7:30 pm
Legacy Books, 7300 Dallas Parkway, Plano TX 75024
972-398-9888     |

Friday, February 13, 2009 - 7:00 pm
Book Passage, 51 Tamal Vista Blvd., Corte Madera, CA 94925
415-927-0960     |     800-999-7909

When Schuyler Rummel-Hudson was eighteen months old, a question from her pediatrician about her lack of speech set in motion a journey that continues today. When she was diagnosed with bilateral perisylvian polymicrogyria (an extremely rare neurological disorder), her parents were given a name for the monster that had been stalking them from doctor to doctor, and from despair to hope and back again.

Once they knew why Schuyler couldn’t speak, they needed to determine how to help her learn. They took on educators and society to give their beautiful daughter a voice, and in the process learned a thing or two about fearlessness, tenacity, and joy.

More than a memoir of a parent dealing with his child’s disability, Schuyler’s Monster is a tale of a little girl who silently teaches a man filled with self-doubt how to be the father she needs.

Praise for Schuyler’s Monster

“A gripping explication, shot through with equal parts horror and hope, of how parenthood can turn ordinary people into passionate advocates.” - Neal Pollack, author of Alternadad

“Robert Rummel-Hudson is brave enough to reveal the damage the discovery of his child's condition did to his marriage and to his own sense of self. He manages to repair some of the damage through close involvement with Schuyler and vigorous campaigning on her behalf. His memoir is honest, often painful and deeply personal.” - Charlotte Moore, author of George & Sam

“The book is engaging and honest - I'm sure it will help many parents who are struggling to find the most loving way to help their children who have ‘issues.’” - Dana Buchman, designer, author of A Special Education: One Family's Journey Through the Maze of Learning Disabilities

“Rummel-Hudson’s memoir offers a moving account of his and wife Julie’s unrelenting efforts to give their buoyant little girl a way to communicate.” – People magazine

“Relating the battle for his exceptional daughter with nimble wit, ardor and considerable descriptive ability, Rummel-Hudson has evolved from blogger to author.” – Kirkus

“…A study not only in Schuyler’s vivacious and resilient personality, but also in the redeeming power of understanding…” – Publishers Weekly

“This memoir, full of fear and rage and disappointment and acceptance and advocacy and ferocious love, offers plenty of touchstones for parents who have dealt with diagnoses that are infuriatingly wrong or frighteningly right….” – Terri Mauro, author of The Everything Parent’s Guide to Sensory Integration Disorder

“Rummel-Hudson chronicles, with disarming frankness, the experience of parenting a child no one knows how to help.” – Brain, Child

“…This story will both compel and inspire readers on their own self-journey.” – Texas Family magazine

“We all play the hand that we are dealt in life. Knowing that there are many people like Robert, Julie and Schuyler who play their difficult hand with grit, tenacity and love makes this world a much better place in which to live.” – The Citizen, Auburn, New York

The Author

Robert Rummel-Hudson has been writing online since 1995. During that time, his work has been recognized by the Diarist Awards and has been featured in the Austin Chronicle, the Irish Times, the New Haven Register, the Dallas Morning News, Wondertime Magazine and Good Housekeeping, as well as on American Public Radio’s “Weekend America.”

Robert and his family currently live in Plano, Texas, where Schuyler attends a special class for children who use Augmentative Alternative Communication devices. Much of her days are now spent in mainstream classes with neurotypical children her age.


December 7, 2008

Tiny Maybe Monster

Tiny monster
Originally uploaded by Citizen Rob
Big monsters are bad.

God knows we've met plenty of kids fighting those big monsters. Kids in wheelchairs. Kids with CP whose bodies betray them when they attempt the simplest movements. Kids with autism for whom the world in which they live bears only a passing resemblance to the one that the rest of us occupy. Kids fighting battles with their bodies just to be able to eat, or to live without crippling infections. We've met kids with big, daunting, obvious monsters, and in her own way, trying to communicate the simplest concepts and so often finding frustration, Schuyler has lived with a sizable monster herself.

When she received her diagnosis five and a half years ago, we met polymicrogyria, her big monster. That day, we learned to fear the even bigger one that might be waiting for her. I think we knew on some instinctual level that Schuyler was not mentally retarded, so grand mal seizures were the ugliest monster we feared. There was a ninety percent chance they would develop, we were told, and in rare cases (but how rare can they be, really, when they are a subset of but a thousand cases in the world), those seizures could be lethal monsters.

Big monsters are bad, that's for certain. But the little monsters, the ones so subtle that you're not even sure they're there, they bring their own special anxiety.

It's been a strange week. Nothing really changed, just the falling together of enough puzzle pieces from different sources and perspectives to reveal what seem likely to be tiny monster footprints. Looking back, we realized that if Schuyler really has been having absence seizures, it probably began this summer. But it's hard to say for sure. It's hard to say whether she's having short spells at school where she loses her focus because she's having tiny seizures, or just because her father's disinterest in school turned out to be genetic. It's hard to say with absolute certainty that Schuyler's little fade-outs at home with us are a product of tiny electrical storms in her head, or just the inevitability of her growing boredom where her parents are concerned.

Julie and I have been watching her all week. Just watching, waiting for a glimpse of her tiny maybe-monster. Schuyler was home sick for a couple of days, and Julie found herself unable to stop staring, waiting. Schuyler noticed, too. "What, Mama?" she said irritably. If what I'm reading and hearing about absence seizures is true, she has no idea she's having them. IF she's having them.

Tiny maybe-monsters aren't much fun. They are like the world's most challenging Whack-A-Mole game, where not only can you not hit them, but they move so quickly that you're not even sure they are there.

Tomorrow we see a doctor. Not a specialist, not yet, but just getting Schuyler started with a new general practitioner. Mine, actually. She knows me, and she's read the book and has at least a basic understanding of Schuyler's bigger monster, which is more than any other doctor of hers has ever had at the first appointment. Most of all, I trust her, completely. From there we'll get a neurology referral, and then start down this road.

It might be that there is no tiny monster, and that Schuyler continues to dwell in that sweet spot, the hundred or so polymicrogyrians of the world who live free of seizures. I live between two mental states right now, the one that clings to that ten percent hope and then the one that's ready to take on this next phase. More than anything else right now, we simply want to know which path we're taking. It's been a long time since we were in this answer-seeking limbo. I'd forgotten how much I hate it.

Yesterday I was driving with Schuyler, and I was listening to an opera because I am just that much fun of a father. The opera was in English, and the characters were mentioning "war" frequently. (Again, fun dad.) After asking me what the music was about, Schuyler hit me with one of those Big Questions that kids drop on us like, well, bombs.

"Daddy," she asked, "what is war?"

I gave her the best answer I could think of. I left out the part where she's fighting a war and doesn't even know it.

December 4, 2008

Monstrum electricus

Originally uploaded by Citizen Rob
In retrospect, it seems almost ridiculous that I, of all people, would allow Schuyler's monster to sneak up on me.

We've been dealing with the issue of Schuyler having focus problems in school ever since the semester began. It's been something we've seen at home as well, where she will phase out and simply not seem to hear us when we say her name. It can be annoying, like the "selective hearing" that most little kids seem to get at some point in their lives, but after a few rocky weeks in school, she figured out her rhythm and started to perform. Her last grade report was all A's. The focus issues continued to come up, but they didn't seem to be seriously affecting her class work, so they became B-List worries.

It wasn't until one of her teachers actually described her moments of scattered focus that something became clear, something that should have been clear from the start, but wasn't. After Julie and I compared notes all day and after going back and doing more reading, and especially after seeing video that it never occurred to me would be available online, we saw it. We're beginning the process of confirming this medically, but today, we think we saw it.

Julie and I now believe that for at least the past six months, Schuyler has probably been experiencing absence seizures.

I'm trying not to beat myself up about this too much. Absence seizures are subtle, after all, and they manifest themselves in different ways, depending on the person. They are also particularly hard to detect in non-verbal subjects, for whom a sudden lapse in conversation is obviously not much of a tell. Watch this video, of a little girl having absence seizures. This video is significant because her absence seizures are almost identical to what we see in Schuyler's little zone-out episodes, particularly in the tiny little movements of her jaw:

As you watch it, ask yourself if you would even notice anything wrong if you didn't know what you were looking for. Absence seizures can be hard to catch even with a healthy, jabbering little kid.

And yet, we should have known better. Ninety percent of polymicrogyria patients develop seizures, most of them between the ages of six and ten. Schuyler turns nine in a few weeks. It's been comforting to think that she was beating the odds again, and it made for a swell line in the speeches I've been giving, but the reality of Schuyler's situation was always there, right in front of our faces. Julie has been preparing emotionally for this day, and so her feelings on the matter are somewhat subdued. Mine you can probably guess.

I suppose that for all my talk, I'd allowed myself to get a little complacent, and a little too hopeful. There's nothing wrong with hope, except when it gets in the way of facing the monster and outsmarting it. Hope can be a positive or a negative force depending on what you do with it, really. Hoping that Schuyler will one day speak is a good thing, for example, even if it's only a remote possibility. But what if that hope led us to put all our efforts into getting her to talk, instead of teaching her sign language and giving her the Big Box of Words? It's the same with the seizures, I suppose, except of course that until the day comes that she has one, there's really nothing to do but be vigilant and prepared to spring into action.

Now that the day may be at hand, the next step is to get Schuyler to a neurologist or an epilepsy specialist and find out if she's actually having them. If she is, then we play it by ear. Seizure meds present complications for PMG patients that can make them an unattractive choice for non-debilitating cases. We'd monitor her seizures, explore whatever medical options were deemed appropriate, and continue to do what we're doing now. We'd work to incorporate her monster into her life, as normal a life as we can give her.

The monster already has a place at the table. That doesn't change. It still doesn't get to eat the fucking table.

While most people with PMG progress from absence seizures to more serious and sometimes life-threatening forms, it is entirely possible that Schuyler could develop something called absence epilepsy, in which her seizures never progress beyond what she may be experiencing now. Even if she develops more serious seizures, the fact that they've developed this slowly and incrementally might mean they won't be life-threatening or an excessive obstacle in her life. She might not be able to get a driver's license, and a career as a fighter pilot might be unrealistic. I suspect she'd be able to live with that.

This has been our fear all along. For five years, the specter of seizures has haunted us. And while this might sound bogus to non-parents, those of you with kids will know exactly what I mean when I say that Julie and I have come to trust our instincts with Schuyler's condition and what it means for her, and we trust it completely. When Yale diagnosed her with PDD-NOS, an autism spectrum disorder, it was our instinctual knowledge of Schuyler and our intuition that told us it was wrong. When we were fighting for her Big Box of Words, we knew on a gut level that she would excel on a speech device.

I've learned to listen to my heart where Schuyler is concerned, and while we won't stop until we have a doctor's evidence, my heart is telling me to get ready. My heart tells me a storm is coming.

In the epilogue of Schuyler's Monster, I address the possibility that Schuyler could one day develop seizures.

The future for Schuyler is uncertain. Our most dreaded fear, the seizures that statistically seem almost certain to come, have yet to manifest. It hangs over us like the sword of Damocles, but sometimes I forget that those head storms might be waiting to ambush her at all. Then I remember and the fear settles back in. That black lump reappears in my chest when I imagine her having grand mal seizures. When I can step away from my fear, however, I also know that even if they do come, she’ll endure and adapt and keep going, powered by an unstoppable will that she possesses and I do not.

If that day is here, it remains true that Schuyler is ready in ways that I'm not, and never will be. But when I lose my way, as I often do, it's still Schuyler who helps me find me way. She's shown me how to do this all along, and I suspect that's not going to change.

As much as I'd like to make it mine, it's still her monster, after all. And she's got its number.