Minnesota Parent review

"Fully formed: a father's journey with his nonverbal daughter"
by Beth Hawkins

Minnesota Parent: "Shelf Life", February 2009

"Somewhere in the process of advocating for his daughter's undaunted spirit, Robert comes to believe in himself as a father. Schuyler's Monster paints a haunting picture of the soul's need to be known, as well as the painful way in which becoming a parent forces one to recognize one's weaknesses and limitations."

Rockin' the Bee

"Daughter with rare disorder is cherished"
by Mary Lou Aguirre

The Fresno Bee, February 2, 2009

In which the author clarifies an important item.

From the comments to my last post:

(After a six paragraph rant about the eeeevils of Socialism)

If Rob was a true socialist as he says he is, he does say he has a socialist heart. So I feel safe in making that assumption.

So Rob, will you keep the profits that you have earned in an honorable fashion from the sale of the book or hand them over to the state? Do you really have a socialist heart or are you just playing make-believe?

That's a fabulous question, thanks for asking! Here's the scoop!

No, I am not a Socialist, or a Marxist, or a Communist. (Is anyone anymore, really?  Outside of places like South America or Albania?)  What is perhaps confusing you in this instance is my use of Humor. In the past, I've been called a Socialist by conservative readers for a number of progressive positions I've taken. The most notable instance occurred when I argued in an admittedly ill-considered guest post on PajamasMedia that kids with special needs deserve an equal education and at least the option of a mainstream education in the public schools for which we all pay with our taxes.

The accusation was so funny to me that I began to sarcastically refer to myself as a Socialist, the humor (at least to me) originating in the idea that I was somehow a bad American, a Socialist and (best of all) an elitist because my political and social beliefs differed from theirs.

It was, in other words, a Joke.

The term "joke" is defined by Wikipedia as "a short story or ironic depiction of a situation communicated with the intent of being humorous". The definition goes on to set out the antiquity, anthropology and psychology of these jokes and even outlining the rules that govern them and the different types of jokes that can typically be found.

Whew! That's complicated!

I realize now how confusing my use of these so-called Jokes can be, so I've decided to explain a few more of them, ones that I know I've used in the past.

OTHER JOKES THAT I HAVE MADE THAT DO NOT ACTUALLY REFLECT THE TRUTH:

• Although she communicates using an electronic device and a synthetic voice, Schuyler is not actually a cyborg. She is not half human, half robot. In fact, the percentage of Schuyler's body that consists of any robotics whatsoever is exactly zero.

• Furthermore, Schuyler does not actually speak Martian.

• In fact, to the best of my knowledge or that of the scientific community at large, there is no such language as Martian. (Note: This could be disproven at a later date.)

• I did actually purchase new pants shortly before my book was published, after I forgot to pack mine when I took Schuyler to New York City to meet with my publisher. The pants I purchased, however, were in no way actually Fancy Pants, aside from coming from the Gap in Times Square and being priced accordingly. In reality, I do not own a pair of so-called "Fancy Pants", and I do not believe that I am actually a Fancy Pants Author, not even by virtue of metaphorical Fancy Pants, or some sort of "Fancy Pants of the Mind".

• I do not own a Cloak of Invisibility, nor do I believe people who ignore me in public places such as the mall or the Department of Motor Vehicles do so because I am actually invisible. I will not, therefore, don this Cloak of Invisibility in order to fight crime.

• When a car or truck on the highway in front of me drifts across the lanes with abandon, I do not in fact believe that the driver of said vehicle is the Flying Dutchman, doomed to wander the roads for all eternity.

• I do not actually believe that my car, Atomo, is "the Air-conditioned Hellcar of the Apocalypse", and I have no plans to drive it across a barren wasteland, Mad Max-style, following the inevitable collapse of our civilization.

• I also do not believe that my previous car, a VW Beetle known as "Beelzebug", was really the Devil or was in any way affiliated with Satan or any supernatural being associated with darkness or evil. (Note: The Volkswagen Corporation doesn't count, as they are not, by definition, a supernatural entity.)

• I do not actually believe that Christianity is a zombie cult, or that Jesus is an Imaginary Friend.  (Note:  Actually, I kind of do.  I'm sorry.)

• Although I claim to quote from its pages from time to time, I do not believe there is actually a publication called The Journal of No Shit.

• In reality, I do not believe that the term "differently abled" refers to children with superhero talents such as the ability to fly.

• Although I publicly claimed otherwise, I would not have actually voted for John McCain in the last presidential election if he had used the words "dagnabbit", "new-fangled" or "old-timey" in any of the debates.

• I did not really believe that the tornado sirens in Collin County, Texas would go off as soon as the voting machine registered my vote for Barack Obama.

• I do not believe that every conservative Republican is a humorless pinhead, and will continue to make that determination on a case-by-case basis.
  

I hope this clears up any confusion, and thanks for writing!

Promotion, sans apologies

Monsters
Originally uploaded by Citizen Rob

I just wanted to post a reminder for those of you in the Bay Area, I will be appearing at Book Passage in Corte Madera, California on February 13th at 7pm. Come see Jimmy Carter the night before, and then just camp overnight. I'm sure they won't mind.

It's going to be a great trip, mostly because I am going to get to see a lot of old friends and meet some people I've known online for years. I'm also visiting some schools, such as the famous Bridge School, that have similar programs to the one Schuyler attends here in Texas. And I plan to be a shameless, generic San Francisco tourist, all Golden Gate Bridge and cable cars and giant trees and Rice-a-Roni. Sorry if I embarrass anyone.

The following Monday night at 7pm, I will be speaking at the regular meeting of the Writers' Guild of Texas, along with my friend Karen Harrington, author of Janeology. The topic will be "A Year in the Life of Two Debut Authors", and it should be a lot of fun. The meeting takes place in the basement conference room of the Richardson Public Library in Richardson, Texas.

I was going to apologize for bothering everyone with book promotional stuff yet again, but you know what? I'm not going to do that.

I recently read an excellent post on author Gwen Zepeda's blog that really made me think. (You should read Gwen's wonderful new novel, Houston, We Have a Problema, by the way. I am digging it muchly.) Hers is a common experience for authors. We find ourselves almost in an apologetic position for actually getting our work into print, and especially for being expected by our publishers to market ourselves in the process.

Gwen writes about being confronted by the stranger who has an axe to grind about publishing, but it happens with the people in your life, too. For a while you just tell yourself that it's probably hard for them to watch someone they know "suddenly" find success. You cut them slack because you think they'll come to terms with it eventually. The person who you are hasn't changed, after all, and neither have the reasons you wrote your book in the first place, reasons that have very little to do with being a Fancy Pants Author. You got published, not because the system is broken and only rewards hacks, but because you worked your ass off and created something you believe in. Still, you don't make an issue out of it because you don't want to look like a dick.

To be honest, I'm tired of feeling like I need to apologize for it. I don't think I'm going to do that anymore.

This touches my nerd soul on so many levels

(Thanks, Omar...)

Guest Blog: The monster in our marriage

I've never had a guest blogger, but I was approached by Ellen of To The Max, and I thought it sounded like a fun idea. Ellen's an editor at a major magazine and is the mother of Max, a tenacious little guy with his own monsters. Her story feels awfully familiar.

Thank you so much, Ellen.

-- r

---

The monster in our marriage

It's the morning of a snowstorm that just started. My husband's with our four-year-old at gym class, and calls to say hi. Because there's a possibility that we might be snowed in for a few days, I tell him to grab a carton of milk from the supermarket on the way home and any other foods that'll carry us through. Dave walks in the door with a very small bag. Inside: a gallon of milk, a jar of salsa and a package of Chili Lime Tortilla Chips. I stare at him, then burst out laughing. We break open the chips and dig in.

This is Dave: A guy who's not always practical, but who sure knows how to enjoy life. This is me: A person who's overly practical and sometimes forgets to enjoy life. We always knew these opposite traits would balance us out, but we could never have imagined just how much so until our son was born. Max had a stroke at birth (not as uncommon as you think-it happens to about one in every 4000 kids). The two primary doctors at the hospital, who we nicknamed Dr. Doom and Dr. Gloom, told us the worst. That Max might never walk or talk. That he would have mental retardation. That he might not see well or hear. You name it, they warned us about it.

That was six years ago. Today, Max walks. Max talks with some words, and via a communication device (a Dynavox), gestures, his eyes. Max is bright. He's determined. He's curious. He's got a bubbly personality, and a wicked streak for teasing his little sister. Like Schuyler, he's also pretty damn cute, which has been a real asset. He has his challenges, but he's the opposite of a nightmare. And the one-two punch of my husband and I has been good for him.

Dave has always been able to just enjoy Max as a kid, whether he's playing monster with him, plopping him onto some motorcycle parked on the street and pretending to let him drive it or splashing around in the pool with him. Me, I'm always trying to sneak therapeutic exercises into his playtime. I'm the one who notices Max is growing out of his foot braces and needs new ones. I'm the research nut -- the first thing I did when I walked in the door after the hell days in the NICU was get online and look up information on strokes and therapies.

Early on, I heard that having a kid with special needs can cause a lot of tension in a marriage, even break it up. I don't know that it's exactly benefitted ours -- I mean, come on. But I do think Max has made Dave and I realize how strong our bond is. We're able to work with each others' strengths and weaknesses, laugh through it all and keep each other sane. Well, most days.

We fight most often about what I consider Dave's “denial” and he considers my “pessimism” (pragmatic, I call it). A couple of years ago, we went to a doctor who told us, “I see Max has trouble using his right hand, it'll always be his helper hand and he'll mostly rely on his left.” After, we assessed the appointment in the car ride home. Dave said, “See? Max will be able to use both his hands!” And I said, “No! He said he won't really be able to use his right hand, and he'll need to make do using one! Hopefully, that one will work OK!” We're the glass half full/half empty couple. Or make that the salsa bowl half full/half empty. It works for us. Most important, it works for Max.

"The price and the promise of citizenship..."

"Our challenges may be new. The instruments with which we meet them may be new. But those values upon which our success depends -- hard work and honesty, courage and fair play, tolerance and curiosity, loyalty and patriotism -- these things are old. These things are true. They have been the quiet force of progress throughout our history. What is demanded then is a return to these truths. What is required of us now is a new era of responsibility -- a recognition, on the part of every American, that we have duties to ourselves, our nation and the world; duties that we do not grudgingly accept but rather seize gladly, firm in the knowledge that there is nothing so satisfying to the spirit, so defining of our character, than giving our all to a difficult task.

"This is the price and the promise of citizenship.

"This is the source of our confidence -- the knowledge that God calls on us to shape an uncertain destiny.

"This is the meaning of our liberty and our creed -- why men and women and children of every race and every faith can join in celebration across this magnificent Mall, and why a man whose father less than 60 years ago might not have been served at a local restaurant can now stand before you to take a most sacred oath.

"So let us mark this day with remembrance, of who we are and how far we have traveled. In the year of America's birth, in the coldest of months, a small band of patriots huddled by dying campfires on the shores of an icy river. The capital was abandoned. The enemy was advancing. The snow was stained with blood. At a moment when the outcome of our revolution was most in doubt, the father of our nation ordered these words be read to the people:

"'Let it be told to the future world... that in the depth of winter, when nothing but hope and virtue could survive... that the city and the country, alarmed at one common danger, came forth to meet it.'

"America. In the face of our common dangers, in this winter of our hardship, let us remember these timeless words. With hope and virtue, let us brave once more the icy currents, and endure what storms may come. Let it be said by our children's children that when we were tested, we refused to let this journey end, that we did not turn back, nor did we falter; and with eyes fixed on the horizon and God's grace upon us, we carried forth that great gift of freedom and delivered it safely to future generations."

President Barack Obama

January 20, 2009

I've got a feeling, just a hunch...

...that's it's going to be a good day.

A Lighter Shade of Grey

Tinkerbell wonders
Originally uploaded by Citizen Rob

We received results of Schuyler's ambulatory EEG tonight while we were driving to dinner. It's funny, but after everything we'd been through, all the anxiety and glue-headedness, I'd almost forgotten that we were waiting for a call back.

As I expected, the news was complicated. It's probably only in the movies that doctors deliver the "everything's okay!" or the "everyone's dooooomed!" speeches. Shades of grey, as I wrote before. But I think we're going to put this in the Good News column.

First and foremost, as in her initial EEG, Schuyler didn't have any seizures during the weekend of her ambulatory EEG, either. If she's having any at all, they are clearly infrequent enough not to pose a problem at this point. Her brain waves during her waking hours were pretty normal, in fact, which makes me think, with cautious optimism, that she's not having any absence seizures at all.

The grey shades come at night. When Schuyler sleeps, the left side of her brain experiences abnormal, unexplainable episodes that aren't seizures but are nevertheless troubling. They don't happen constantly and don't represent a consistent state of being, but they're there, and not random incidents but regularly occurring events. They only come when she sleeps, and they occur mostly on the left side.

Are they precursors to something more sinister down the road? Seizures yet to come? The vanguard of an alien invasion, foretold in Schuyler's strange Martian jabbering? Is this a harmless oddity of Schuyler's funky, broken brain or a Very Bad Thing? Is this a new phenomenon, or has it been there all along, just one more signature of Schuyler's monster?  No one knows.

Anyway, there it is. No absence seizures, which is good, but some weird scary boo sleepytime thing that could be nothing at all or the beginning of seizures, stigmata and possibly the Apocalypse. I do believe we're going to celebrate the absence of monster who isn't here just yet, even if its plane has just been delayed, and not worry about the other thing for the time being.

In six months, we'll go through this all over again. Perhaps by then, Schuyler will have forgotten about the glue in her hair. That's not what the smart money says, though.

Izzie Redux

Isolde
Originally uploaded by Citizen Rob

It wasn't a huge surprise. She'd been slowing down a lot lately, which is probably why I was moved to write this post a couple of weeks ago. I didn't notice anything unusual when I gave my dwarf hamsters their favorite little yogurt treats yesterday; Isolde took hers from my hand and held it in her gimpy little paws, while Tristan took his and scurried suspiciously to the other end of the tank. Being unable to run, Izie had long ago decided to trust.

But when I checked on them this morning, I knew something was wrong. Tristan was up and moving around by himself, seeming a little out of sorts. But Izzie was nowhere to be found. I poked around in the bedding and found her curled up in the corner. She'd died in the night, apparently in her sleep.

Well, I'm a forty-one year-old, supposedly grown adult who probably shouldn't be overly sentimental about a hamster, but yeah, I'm pretty bummed. Izzie was a tough little critter, and her passing feels, I don't know, portentous.

More to the point, Schuyler likes to come and see the hamsters, mostly because she likes Izzie so much. Tristan is too twitchy and quick-footed for her, but Izzie would let Schuyler reach in and pet her and even hold her. As I said, when she lost her mobility, Izzie had long ago learned to trust the big hands.

When Schuyler woke up, I told her I had some bad news. I took her into our bedroom and showed her Tristan. She noticed immediately that he was alone; he was never without Izzie, not in the past year or so. I explained to her that Izzie had died in the night. Schuyler gave me a long hug, and for a moment I thought she might cry. But instead she just watched Tristan for a moment.

She looked up at me. "He's sad," she said, signing sad to me. "He needs a new friend."

So I suppose I know what we're doing today.

Goodbye, Izzie. For a tiny, broken rodent, you were weirdly inspiring.

---

Update, 3:45pm

Izzie is dead. Long live Zizzy.

(Schuyler's naming protocol is pretty straightforward.)

Fairy howl

I think I just took my favorite photo of Schuyler ever. If you want to know Schuyler and how she takes on a mean world that she nevertheless loves without limits, here she is.

Maya's Monster

Here's a story I happened across. On one hand, it's a fluffy, feel-good story about a little girl with a disability and her helpful hero dog.

But here's the thing. The little girl, Maya Pieters? She has bilateral perisylvian polymicrogyria, also known as congenital bilateral perisylvian syndrome.

Schuyler's monster.

Her BPP manifests itself very differently from Schuyler's. Unlike Schuyler, this little girl suffers from seizures, frequent and serious. Also unlike Schuyler, however, she speaks.

I don't really have much of a reason for posting this here, except that it occurred to me as I was watching the video that it was the first time I've ever watched video of (much less met in person) another child with BPP. How strange it was to hear her speak.

Also, Schuyler's dog, Max? Totally useless. Sorry, dude.

'Thrown Away' Dog Saves Little Girl's Life
By Laurie LaMonica

December 30, 2008

LANCASTER COUNTY, Pa. -- When the Pieters family adopted Jack, a dog once left to die in a dumpster, they hoped he would act as a constant companion to their daughter, Maya.

They never considered that the Terrier mix would also save the little girl's life, on more than one occasion.

Jack's loyalty -- and keen senses -- have proved that one person's trash can truly become another's treasure.

Just ask 8-year-old Maya, who inspired her family's trip to the Humane League of Lancaster County in 2004. When the Pieters saw how seamlessly Maya bonded with Jack, he had nowhere to go but out of the kennel, and into their home.

"Maya was down on her knees and her face as close to the gate as can be and he's licking her and I heard Maya talk more then to him then she had in a whole week," recalled Maya's mother, Michelle Pieters, of their first encounter with the dog.

The connection was exceptional for the young girl, whose condition forces her to struggle with normal oral and social functions.

When Maya was 3-years-old she was diagnosed with congenital bilateral perisylvian syndrome, an extremely rare condition that only 100 to 200 people in the world are reported to have.

The disease affects Maya's oral motor functions -- such as speech and swallowing -- and could cause seizures. But it also took a toll on Maya's self esteem. Always left out by other children, Maya became very withdrawn at a young age.

Maya's speech therapist, Donna Buss, suggested the Pieters family get a dog in 2003. She thought it might benefit Maya's socialization skills. Buss says Maya's shyness made their sessions difficult -- at the time, very little progress was being made.

So the Pieters launched a search to adopt the perfect dog. It took one year to find one that Maya felt comfortable with -- but the wait, in the end, was all the more worthwhile.

Though flea infested and dirty, Jack was the miracle for which the Pieters were searching.

Maya bonded with Jack instantly and the connection would prove more significant than Maya or her parents could have ever predicted.

Jack was sleeping in his crate one morning last year, when suddenly, without apparent provocation, he leaped from his bed and darted up the steps to Maya's room. The door was closed, but Jack sensed that Maya was inside -- and that she, for whatever reason, needed help.

The dog began to relentlessly claw and bark at the door, until Maya's family took notice of the dog's frantic state.

Jack, the Pieters realized, knew exactly what he was doing. Maya was found in her room, having her first seizure in her sleep.

Jack's urgent response to Maya's seizure probably saved her life, as the seizure was a new, unprecedented symptom of her condition.

The Pieters took to calling the little shelter dog "Maya's guardian angel."

Since that first episode, Maya has suffered other seizures. Each time, Jack has been able to preemptively sense when Maya is about to have a seizure. He has broken her fall, sat on top of her to help settle her convulsing body, and when she finally wakes up, licks her tears dry.

Jack has helped Maya in other ways as well. Upon adopting the dog, Maya's oral motor functions have improved drastically. Before Jack, Maya did not speak very often and was very sensitive to her face being touched.

Jack has helped Maya overcome these problems with routine face lickings, playtime and simply standing in as Maya's constant companion.

All of these accomplishments led to Jack's nomination for the Humane Society of the United State's "Valor Dog of the Year," an award to honor and celebrate dogs that have performed extraordinary acts of courage.

Jack competed against heroic dogs across the country, and although he didn't win the main prize, he was granted the "People's Choice" award.

Jack may have no idea he is nationally known for his good deeds. All he knows is someone once gave up on him, threw him away like a piece of trash.

And now, he is loved by a family, cherished by a little girl. In return, as much as Maya Pieters gave him a new chance at life, Jack has given her the same gift, as well.

Glue

Gluehead
Originally uploaded by Citizen Rob

Schuyler had a good weekend with her ambulatory EEG. She made the best of her cyborg status, even putting together a little headwear fashion show yesterday. She was a real trouper, and when we went to the neurologist's office this morning to have the gear removed, we though the worst was over.

Yeah. It turns out that the tape in her hair wasn't what actually secured the sensors in place. No, that would be the glue.

Glue.

After washing her hair for about an hour and using everything from clarifying shampoo to dishwashing soap, Schuyler still has a sticky, persistent mess in her hair, stuff that reminds me in its consistency of the glue we used to use to put together model airplanes when I was a kid. It's not coming out easily. A call to the unfriendly tech who put this crap in her hair in the first place was no help. ("Did you try running a comb through it?" Really? Really?) Helpful friends on Facebook and Twitter, many of whom have been through this themselves, have suggested conditioner, oil-based washes, fingernail polish remover, Goo Gone, peanut butter, rubbing alcohol, peppermint oil, vegetable oil, mineral oil, baby oil, tea tree oil and a concoction involving aspirin, shampoo and Seabreeze. All of which we'll no doubt end up trying before this is over.

I'm annoyed. I am, in fact, profoundly annoyed, because I cannot imagine that in the year 2009, the very best way to secure EEG leads to a child's head is with glue. (For that matter, is there really no other way to measure brain activity that this? Isn't this technology from the 1970s? Is my kid's brain activity being monitored by machinery that predates the 8 track player?) We're nearing the end of the first decade of the 21st Century, popularly known as The Future. Really? Fucking glue?

The answer, I suspect, is of course they could develop something better, something with a bond that could be easily broken with a specific chemical compound design especially for the purpose. I wouldn't be one bit surprised to find that just such product already exists.

But why bother? Those of us who have been immersed in medical procedures for years learned long ago that while there are a lot of very caring doctors out there, the medical industry as a whole still struggles with the concept of the patient as a human being. This is especially true of pediatrics, where psychological and social development is particularly vulnerable.

Schuyler had her ambulatory EEG performed by pediatric neurologists, after all. You might think that this meant they were especially sensitive to the issues involved with children, including the social and psychological effects of the treatment and studies being undertaken. But when no one sees a problem with putting glue, and lots of it, in the pretty hair of a nine year-old girl and then sending her back into an ugly world that's already not very nice to a kid who is different, that's because no one's considering the psychological and social issues that might come as a result. Not even "pediatric" neurologists.

It's not a huge issue, not in the big scheme of things. We'll get all this crap out of her hair somehow, and if we don't, it'll work its way out, or it'll grow out. The larger issue for me is that once again, we are witness to yet another example of how Schuyler and her fellow broken children are marginalized by the medical industry.

It's one of the reasons I do what I do, and write what I write. Because Schuyler is more than a transportation unit for a scientifically interesting brain, and she's more than a case study to which an insurance payment claim may be attached. She's wondrous little girl, and putting glue in her hair because it's the easiest way to accomplish your medical task diminishes you and your industry, not her.

So yeah. I'm pissed. She's not too pleased, either.

---

8:15 pm

Update:  We went the all-natural route, working in coconut oil and peanut butter and letting it sit for a couple of hours.  She's in the bathtub now, and it seems to have mostly worked.  Her head smells weird but appears to  be glue-free.  So now we know.

Hawaiian Rock Star Princess Knight Cyborg

I'm going to go out on a limb and say that she's not been terribly traumatized by the ambulatory EEG this weekend...

Schuyborg

One Week

So yes, let's take a look at this week, this one week in our lives here. I'd call it a roller coaster ride, if there existed a roller coaster that required both an oxygen tank for the highest altitude and a pressure suit for the subterranean low parts. Mostly, it's just a weird week.

Sunday. We started off the week with an all-nighter, in preparation for the Sleep Deprivation EEG the next day. Schuyler and I got through it with beverages, snacks, Cloverfield, Speed Racer and King Kong (the Schuyler "Good Parts" version, which basically skips the first hour, and includes the scary fish monster in the director's cut).

Monday. Well, you read about her EEG already. No seizures, but episodic abnormalities recorded. Neurologist said that he will schedule a new EEG, this one lasting 48 hours and requiring Schuyler to wear a mobile device for two days. After the unhappy ending of Monday's EEG, I'm not looking forward to telling her that she gets to do it again, and for, you know, forty-eight times as long. The doctor's office will call us to let us know when this new EEG will occur. If past experiences with neurologists are any indication, this appointment will be sometime in June.

Tuesday. Today, actually. The trade paperback edition of Schuyler's Monster came out. You went and bought a copy, plus two for your friends, right? No? Okay, well, here you go.

Wednesday. Who knows what tomorrow will bring?

Thursday. This is the day of my big author event at the Dallas area's extremely cool new independent bookstore, Legacy Books. (Beware, there's a loud thing on their website.) There's a wine bar, too. I'm just saying.

Which brings us to...

Friday. Turns out I was wrong about neurologists. When she gets out of school, Schuyler will be picked up by Julie, who will then take her to the neurologist to have her funky wire hat put in place for the weekend. I have no idea what it will look like, although I'm hoping it'll be something like this:



Schuyler will wear the funky wire hat until Monday, when I will take her back to have it removed from her no doubt slimy and vile little head. Then there'll be about fifty shampoos and as much ice cream as she can eat.

It was a delicate dance, telling Schuyler about her impending return to the EEG, which she ended up hating yesterday. She was resistant to the idea at first, but she responded very positively to that oldest parenting tool, the bribe. She says she's excited about it now, excited about proving that she can be a good girl, and a big girl, in order to claim her Prize. Her Bribery Prize.

Sometimes people ask me how I think Schuyler will react to the things I've written about her here and in the book. Perhaps I'm in denial, but I truly believe that she will read my words and know of my love for her above all else, and her grasp of the bond we share will only be strengthened by her understanding of how deeply that bond has run, her whole life. There is very little I have ever written about her that I think she might find upsetting.

But Schuyler, my love, my sweet darling girl, if you look back on this and read this entry from the vantage point of adulthood, I have a shameful confession to make. Do you remember the bribe I offered you in exchange for your cooperation in another pain in the ass EEG? The new Mac, your very first computer, the one I said I would buy for you when I got my next royalty check in February of this year, IF you complied with this new test?

Well, yeah. Funny thing. Turns out, I was already planning to get it for you anyway. Dick move on my part, I know.

Grey matters

Waking up, unhappy
Originally uploaded by Citizen Rob

We wanted a black and white answer, something sure, something where we could say "That's great news," or "That sucks, I'm going to get drunk". Something where our friends and family and readers could join us in celebration or console us as we got ready for the next big fight.

The reality that most special needs parents face is cloaked in shades of grey. We finally receive the answers for which we wait for so long, and we step back and look at them and say, "Huh. Okay then. What now?"

So here's the short version. During the hour or so that Schuyler was connected to the EEG monitor, no seizures were recorded. A number of episodic abnormalities were recorded, none of them bilateral and the majority of them occurring on the left side of her brain. Probably not surprising, considering the malformation of Schuyler's brain that is the signature of her monster, but it presents an unknown wrinkle nevertheless. These abnormal episodes aren't seizures. We're not sure what they are or what effect they have on her, if any.

More questions. More grey areas.

The next step will be an extended, 48-hour EEG, in which Schuyler will spend the weekend wearing a portable unit that will record her brain's electrical activity as she goes through her day. Not sure when this will happen, but we'll find out soon. Easy, right?

I'm not sure how it's going to work, actually. Getting her to go through another EEG might be a challenge. She was having a good time for the early part of the procedure. The tech was a lot of fun, and he let her help put the leads together with the tape and ask "What is this?" about every device and doodad he used. She loved that he could mysteriously understand every Martian word she said, as if he spends his days hearing worse speech than hers from more severely broken kids, which of course he does. She didn't even mind the stinky, sticky blue goo that went in her hair beneath the sensor contacts.

But when the test began in earnest and the lights began flashing, she suddenly began to take it seriously. I think she suddenly remembered, at least on some level, the endless tests and evaluations and medical procedures that predated her diagnosis back in 2003. By the time she woke up from the sleeping portion of the festivities and rubbed her little hands (and apparently just a little of the blue goo) in her eyes, she was well and truly DONE with the EEG. It has been years since I've seen her cry like that. She actually asked for Jasper, her oldest and most beloved teddy bear, and wouldn't let go of him for the rest of the afternoon.

I think I understand what she was feeling. Even though she was probably too young to remember much of it now, I think on some subconscious level, Schuyler was suddenly back in 2003 again, being tested and evaluated and confused by medical procedures which could not have possibly made any sense to her. For a while, Julie and I were in 2003 again. Not because of anything that was actually happening today, because really, the EEG was just about the least traumatic procedure imaginable. Nothing painful except for the irritation in her eyes (and really, that was just the blue icing on the already unhappy cake at that point), and no one was treating her like a patient instead of a person. And yet, the underlying feeling was the same.

Sometimes, most of the time, the monster isn't a thing we face. It's a thing we fear, a thing that exists not as a reality, which can be shitty but is at least something that can be grappled with, but instead as a growling "What If?" in the dark. When Julie saw Schuyler asleep on that bed, her head wrapped in wires and full of innocent little girl dreams, she cried, because that's how she purges it. She cries and then she gets back to work. I sat in a chair next to the bed, the lights turned down low as I watched my little girl sleep, and for a few minutes I let myself give in to the gathering gloom, the shadow that seems to creep around Schuyler in those moments. I didn't cry so much as let the feeling grip me. Tears in my eyes, perhaps, but not crying so much as feeling that little pit as it opened again, the one that we first saw six years ago and only occasionally have to peek into.

And then we pull ourselves together, we dispel the fears, if only for a little while, and when the lights come on, the shadows recede. And we get back to work.

We ask black and white questions, and we receive grey answers in return. And when I think about it, I guess that's probably for the best. I've seen far too many families who looked for black and white answers and only got black ones. I'll take grey.

"There will be snacks..."

For Schuyler's EEG, she has to be sleep deprived. We're staying up all night, watching movies.

Tomorrow may bring hard news or frustration, but tonight, it's Cloverfield and Speed Racer and King Kong (Schuyler's "Good Parts" version).  It's a good night.

A Confederacy of Monsters

On Tuesday, the trade paperback version of my book comes out. On Thursday, I have an author event at a fancy venue, with good friends there. And the thing is, I am really very excited about it all. But at the same time it feels distant, like party sounds coming from the house next door. My focus, borne out of five and a half years of vague anxiety suddenly made real, is aimed like a laser on tomorrow.

Tomorrow's the day. Tonight, Schuyler and I will stay up all night watching scary monster movies. (If you saw the lineup, you'd either be jealous or you'd call Child Services.) Tomorrow, a neurologist will glue sensors to her pretty head and attempt to flush out her monster.

I'm not asking for your prayers, because you know how I feel about your God and what he's done to my child. But I hope you'll think good thoughts for us and send whatever positive energy you can in Schuyler's direction. Could that represent the same thing? Perhaps. All I know is that we need answers, once again.

I wanted to take a photo of Schuyler for this entry, so I went in her room and asked her to grab her favorite monster. She picked this guy, a gift from my editor at St. Martin's. As I took photo after photo, she began explaining to me about tomorrow, about what they were going to do, and why. I was really surprised to see that she was processing this EEG and the reasons behind it; I've explained it to her, but I wasn't sure she got it until now.

Even more interesting to me was that Schuyler understood the connection between the monster in her lap and the one in her head. I get the sense that she loves them both, in her weird little way.

Izzie

Tristan and Isolde, in happier days
Originally uploaded by Citizen Rob

Longtime readers will know that I love dwarf hamsters. I once even ran an information site about them, which just goes to show you that everyone loves something weird and has a secret passion. Mine, as far as you know, is dwarf hamsters. There's weirder stuff to like out there than dwarf hamsters. Trust me.

My favorite dwarf hamster is the Roborovski hamster, and not just because of the name. Roborovskis are the smallest of the hamsters, and they're quite a bit different from their cousins. They live about twice as long, they don't mate as often, and while they are much more active and twitchy, they are also much friendlier than other breeds of hamsters. I've never been bitten by a Roborovski hamster. They're not very cuddly except with each other and don't really like to be handled, but they are otherwise very sociable little guys and I just love 'em.

There is a special mutation that has recently been bred in Roborovskis that results in white-faced hamsters, and when I found one and brought it home with a normal Roborovski mate, I was as happy as I could be. The brown hamster I named Tristan, and the white girl Isolde. I quickly came to call her Izzie.

A few months after she came home with me, I found Izzie one morning, lying on her side in her cage. Her eyes were open and she was alert, but it was clear that something was terribly wrong. She could barely walk and dragged herself on one side. I was heartbroken. Strokes are fairly common in hamsters, and there's not much you can do for them when they strike, except just make them comfortable. I didn't know what else to do for Izzie; I certainly wasn't going to try to put her out of her misery. I mean, how would you do that, anyway? So I watched her sadly, and I waited for the end that seemed sure to come.

Over a year later, I'm still waiting.

This isn't the story of a poor dead hamster; she's still around and still kicking. This is the story of a pretty little thing that suddenly became a twisted, skinny little scrap with bugged eyes and a funny walk. Izzie didn't die, and while she didn't exactly get all better, she did figure out how to walk around fairly quickly, and how to keep herself steady when she drank from the water bottle. Tristan became very protective and nurturing to her, hardly ever leaving her side, and so for the past year or so, I've watched these two hamsters, named after famous but doomed lovers. They've written their own story, however, and so far, it's been a happy one.

Every day, I go to their cage and I find Izzie sleeping, curled up grotesquely like a dead bug, her eyes half open. She looks dead every time, and so I remove the lid to the cage and blow gently on her. I can't help myself. And every time I do, she pops up, rudely awakened, and looks up at me with her bulging eyes as if to say, "Dude. Fucking quit it already." She is unmoved by my concern.

Izzie's not a metaphor for some larger issue, as tempting as it might be to try to turn her into one. She's simply a tough little hamster who refuses to die like she was supposed to, and her fat little mate seems to love her without limits. Every day I watch them, and I wonder about this world in which it is the broken and the seemingly forsaken that fight the hardest, for an existence that the rest of us take for granted. So I don't know. Perhaps she is a pretty good metaphor.

She still hates it when you blow on her, though.