June 25, 2008

Summer monsters


Three little monsters
Originally uploaded by Citizen Rob
It's been a while since I've really had much to say here. I haven't been staying away because of any great tragedy. I've just felt, I don't know. Quiet, I suppose.

The early days of summer have been different this year, for the simple reason that we've elected to keep Schuyler at home with us rather than handing her over to another summer program. I feel like I got adequate practice writing angry emails to administrators last summer, after all. The one thing her summer programs have had in common for some time has been the lack of progress she's made on her Big Box of Words. When she was at the YMCA, she never used it because they were constantly playing hard and swimming and having fun being feral kids on the go go go. Last summer, she didn't use it because the people taking care of her were too busy searching for a quarter for the clue bus.

So now she spends her days with one of us, mostly me since my boss doesn't mind her coming in to the office. I think she actually brightens the place up when she's there; the associate dean went out of his way to tell me how much he enjoys hearing her playing in the next room. She brings in toys (sometimes her fairies, other times her big slobbery monsters) and draws and watches movies on my laptop, and the summer session at the university doesn't seem so ghostly. During the hour-long commute, she jabbers away and watches the world going by with interest.

The more time Schuyler and I spend together, the more conspiratorial we become, which is nice, at least for us. When she has her monsters in the car with us, she asks for me to play the "monster mix" I made for her on the iPod (consisting of music from monster movies like Cloverfield and King Kong and Jaws and War of the Worlds), and we drive along pretending to devour the people we see on the sidewalks.

"Daddy!" She says. "Eat that guy!" Which of course I do. When she eats that guy, she only eats half, handing me the rest. She's a very generous monster.

A few weeks ago, her cousins came to stay with us. One of them, almost exactly Schuyler's age, is a smart kid, almost scarily so in fact, but he's also trusting in a way that is perhaps unfortunate when he's got an uncle and a cousin who spend so much time trying to trick and scare each other. (For instance, he now believes that I know a deadly martial arts move called the Monkey Paw, which I can't teach to him because unlike me, he only has ten fingers. Something to think about if you are considering asking me to watch your kid.)

Schuyler invented something called the grass monster a few months ago, a krakenesque creature lurking under the surface of the lawn who will grab you if you walk on the grass. When her cousin came to stay, Schuyler played grass monster all weekend, and I fleshed out the story for him until the grass monster had reached legendary status in our house.

Once he returned to Arlington, he googled "grass monster" and "arlington" from time to time, and always bragged to me when I saw him that there wasn't a grass monster in Arlington. Thus, he was safe. So really, in my own defense, I think a case could be made that some things are just inevitable. (He called me yesterday morning to give me the news.)

Julie's summer has been a little rocky, mostly on account of her work situation. I've worked in a bookstore in the past, same as her, so I know how petty and ridiculous the environment can become, particularly during the slow summer months when people grow bored and restless.

Still, it pains me to watch her deal with a work environment that increasingly resembles nothing so much as junior high school, with a paycheck. I don't write much about her here, for reasons that have been made clear before, but here's what you need to know about Julie, something that people who truly get to know her already understand.

Julie works very hard to maintain a positive and friendly attitude when she's at work, not just having a professional attitude but being open and friendly and funny as well. When she finds herself having to guard herself against petty people taking advantage of that, it does more than cause her to come to work and behave like a retail automaton.

It takes away her refuge, a place where she can go to escape the fact that the light of her life, the little girl who means every bit as much to Julie as to me, is living a life under threat, where every perfect moment has possibilities hanging over it that could snatch everything away in a moment.

I recently read a report of another kid with polymicrogyria, this one closer to Schuyler's age, whose life was suddenly and cruelly snatched away by seizures, the ones that Schuyler has yet to suffer but which hang over this family like a cloud. The possibility of meeting that one last terrible monster isn't something for Schuyler to fear, but her peace belongs to her alone. I can't afford to drop my guard, ever.

And neither can Julie. I write so much about Schuyler's monster that no one ever forgets the thing I live in fear of. I wish the people in her life would remember Julie's anxiety, though. It's her monster, too.

30 comments:

Kizz said...

Please tell Julie that I remember it's for her, too. And I'm sure I'm not even close to the only reader who does. I'm also terribly sorry that the people she works with are ass monkeys. I've been there and it's just stupid. I mean, I'm not a fan of being all grown up or anything but, in certain situations, it's required and work is one of them.

Anonymous said...

Man, this brought tears to my eyes. (And I'm in public right now!) As a mom, I feel so deeply for Julie. For what it's worth, I hope you both know that people all over the world hold all your hopes and dreams and fears for Schuyler in our hearts as well.

Much peace.

Unknown said...

what a horrible way to have to live, waiting for the other monster to fall...hug.

Liana said...

Poor Julie. I am all too familiar with the "Junior high with a paycheck" work situation, and...and it made me dread going to work and cranky when I was home...because I always tried just to be nice and/or silent and not participate in any backbiting or gossip.
And Julie has it way worse than I did.
Make sure she knows we appreciate her struggle! And I really hope this is just a phase at her workplace.

Unknown said...

I'm SURE that someone has suggested this before, but I'm not above reinventing the wheel. have you though about you and Schuyler writing a kids book about Monsters?

Unknown said...
This comment has been removed by the author.
Heather Ann said...

Rob, that grass monster report is amazing. You are a great prankster uncle. :)

Anonymous said...

We know the seizure monster and you put it perfectly.

We have seen picture perfect days at the pool, ready to go to a party, or simply a quiet moment cuddling turn into fear, medical emergency, and chaos in an instant. It does loom over you constantly.

We have seen status seizures that would not stop without an amazing amount of drugs. Only to be left wondering if the girl you knew before the seizure will be back. Wondering what the monster has left in his path.

Our daughter had surgery to have the seizure monster removed in January. Still, we know him well and he is peeking in once again we fear.

My husband and I fear him more than our daughter ever has or will. We have fights with him in our house - with foam swords and nerf guns. My daughter draws him, writes about him.

Anyway - we are with you. It's a heavy chance of devastating storm at any given moment for us as parents. Still we have to smile and sneak in as much fun, life as we can before it hits.

Always hoping that by some miracle, it will spare us and our children.

Julie, they have no idea.

Anonymous said...

My two-year-old has epilepsy, and so I also live in fear of all sorts of seizures. I'm getting better at living with it, though. My daughter's seizures aren't life- threatening, but I do have to carry around special medicine to give her rectally (?!?!) in case a seizure were to last too long. The one good thing about my kid's condition is that it is mostly controlled by medicine.

If Schuyler started to have seizures, could she take one of the many anti-seizure meds on the market? I'm not sure how that would work with her condition.

So, my husband and I just finished your book. Incredible! We loved it! You write so well about dealing with all the dumbos in the medical profession. OK, I know they're not all dumbos--but some days it seems that way!

When will your book tour take you to Indiana? I'm in Bloomington.

Anonymous said...

Cheers from another member of the Julie Fan Club. She is funny and pragmatic and smart, and a true model of modern womanhood.

Maybe it's her turn to write a book.

Elayne said...

which I can't teach to him because unlike me, he only has ten fingers

...Did I miss something?

Mami Adame said...

I hope Julie knows that she is also thought of when people think of your family. I found your book so interesting and captivating. It was neat to hear a Father's point of view.
But as a mother of a daughter with DiGeorge Syndrome, I often wonder how Julie is doing...Hope you all take time to take care of each other.
Thank you for enlightening me on so many things with your book!
I admire the 3 of you, and I love seeing new pictures of Schuyler!
Visit us @ Angelheart2blogspot.com sometime!

Solcat said...

I LOVE the Grass Monster Report! But there really is a supposed Grass Monster, I just watched an episode of Monsterquest about it.
Reading about what Julie's going through at work really got me too, why is it that the workplace all too often is nothing better than junior high with a paycheck, you'd think people would grow the hell up. Maybe they should be fed to the Grass Monster.

Karen Harrington said...

Hugs.

Anonymous said...

I am in fear of the monster myself. My son had an absence seizure when he was 3, and we did not think anything of it. Well, he had 5 to 10 more the day before his 13th birthday. We were told that some day he will develop grand mal seizures....I dread each day thinking that today could be the day that will change his life. But on to a better point ...he also has a big box of words which never got used when he was in summer care. So we also are keeping him close. I read your book, it was amazing!! Thank you for writing it and showing the world they are not alone in dealing with issues.

Anonymous said...

Oh, how I feel for Julie at this moment. Even though I don't have any children, my parents are starting to show their age. Meanwhile, I'm stuck at a job without much time off available - a thousand miles away from my parents. It. just. sucks.

Donna said...

I hope you don't mind but I showed my niece the grass monster report because I have such trouble keeping off the neighbor's lawns when she walks to my house from her father's. She's still hesitant to believe me but I pointed out that it was on the internet so it had to be real (please note sarcasm but she's 9 and still waits on money from the tooth fairy). Thanks again! Hugs to all from San Antonio

woolywoman said...

Actually, any of our children could be snatched away at any time. You just have the misfortune to know the name of your monster. Sort of like being temporarily able bodied- the TABs of the world are frequently not aware of how easily and blamelessly their status could shift. Live every day with her. I hope the monster never comes.

Anonymous said...

Nice to have you back at the blog — it's been a while! Hugs to you three. And I feel for Julie — there's nothing worse than a crappy work situation.

Anonymous said...

Ah, crappy workplaces. It really drags down your entire life, doesn't it? I thankfully don't have any specific monsters looming over my head in addition to dreading my work, but I feel for Julie nonetheless.

I'm sure I read the answer to this question in the book, but has every case like Schuyler's resulted in seizures at some point, or is there the possibility she might never have them? (Not that the waiting in uncertainty makes it any better...)

My childhood best friend and I spent a summer taking refuge on the monkey bars in my back yard from the imaginary lawn alligators below. The grass monster probably could've kicked their asses.

Robert Hudson said...

There's a chance she won't have them. 85-90% of BPP kids get them, but 10-15% aren't impossible odds. She's beaten worse.

Linda Ball said...

I like Julie, but you know in the work wars it's always this way. Your co-workers can build a little fake world where real life isn't a factor. But the truth is, real life is ALL there is. When I worked, I only managed to not throttle someone by just realizing that I knew what they didn't. It. Doesn't. Really. Matter.

kris said...

Another Julie fan here. Though we don't read much about her here, I love what I learn about her in the photos you take of her with Schuyler. Some of those pictures say more than a post ever could. Crappy work situations suck. Tell her to hang in there and that we're rooting for her.

Also, there's a great Grass Monster episode of the X Files (Arcadia...6th season, I think)...in fact, I bet Schuyler would be a fan of a lot of the "monster of the week" X Files eps.

Lucky said...

I too live in fear of my 2 year old to develop seizures from BPP. I'm curious of how the seizures you spoke of effected the other child with BPP and at what age? Just another part of this nasty disorder. Thanks for writing!

Troop 220 said...

We too, live in fear of the seizure monster. My daughter has schizencephaly which is very much like Schuyler's disorder. Thank you for the post if reminds me that we are not alone in this and that it is our monster as well as Julia's.

Anonymous said...

Best wishes to Julie. That is not easy. I really respect people who are positive and fun and try to enjoy life and it makes me angry when others try to bring those vibrant people down. Hang in there, Julie!

And thank you for introducing me to ways to mess with kids I know. You are a genius. Love the grass monster report!

And I recently finished your book, which was just wonderful, Rob. My mom loved it too!

Anonymous said...

I echo many of the sentiments left here already. My wife and I have been following your journeys for years now and have nothing but well wishes for your family.

Keep fighting the good fight as the saying goes.

Chris and Sarah said...

Hi Rob,
I just finished your book and couldn't turn the pages quickly enough. I am a 2nd grade teacher and have attended more than my fair share of IEPs in my 8 years of teaching. Reading your book, and hearing your and Julie's frustrations opened my eyes and dropped my jaw as I saw how many doors were slammed in your face as you heroically blazed a trail on your daughter's behalf. Sometimes I want to stand on my Homemade Teacher Pedestal in those meetings, and I honestly believe I DO know what's right for a particular student, but you have caused me to take a step back and have a more authentic appreciation for the parents' perspective, rights, and wishes. Thanks for being so candid, feisty, and blunt! You are my kind of funny.

Anonymous said...

I can see what it angers you so, that she has to tolerate bullshit in a place that should be a reprieve, a place that she brings positivity to. I feel for her. And for you for worrying about her.

Chaos Mom said...

I've only just started reading your blog...and find it wonderful! you mentioned Schulyler's fascination with mermaids, and then again mentioned the 'grass monster'. have you seen the movie Lady in the Water? it came to my mind right away! i loved that movie (partly because it was a good movie, and partly because i saw it with my son, so now i can't think of it without thinking of the fun we had that day). i think Schuyler would like it too :)