Schuyler has her reality, and I have mine.
I was looking at my stats today and found this blog entry, in which a blogger dreamed that she came here and found my blog empty, except for a single word: "dead".
"I woke up crying," she wrote, "thinking Schuyler had her first big seizure and her little body couldn't handle it."
When I read that, I was stunned. I just sat here and looked at my screen silently for maybe a minute or two. I wasn't upset with the blogger; indeed, I'm touched that people care enough about Schuyler to allow her to get inside their heads and fuck up their dreams. And really, if something did happen to Schuyler, I'm not sure that I'd have the will to post much more than a single word. But in a single short entry, this blogger managed to land on my worst fear with both feet.
In my book, I quote Dr. William Dobyns as saying, "I can tell you I’ve only had two patients die from their seizures." He meant it to be comforting, I'm sure, but of course it wasn't. In my naivety, it hadn't really occurred to me that she could die from them.
But here's the thing. Schuyler hasn't had seizures, not a single one. According to Dobyns, they tend to manifest between the ages of six and ten, so she's just now entering the danger years, but I don't think she's ever had one, not even a small absence seizure. (When she was young, I thought she'd had them, but apparently they typically come in groups, not singly. According to Dr. Dobyns, Schuyler was probably just zoning out like little kids do. Well, little kids and me.) The odds are about 85-90% against her dodging seizures, but she's beaten the odds before.
So Schuyler goes through her life as happy as a butterfly, unaware or unconcerned about the thing that literally keeps me awake at night, this Sword of Damocles that she never notices but which I rarely take my eyes off of.
Julie feels the same way. We very rarely leave Schuyler with a babysitter, and never for long, in part because of our fear that it could happen, that first one could hit and Schuyler wouldn't be with her mother or her father or her teachers. It's silly, and we know it, but there it is. We don't even leave her with family very often. Schuyler is literally never alone, except when she sleeps. And I worry about it happening then.
People tell us that we should adopt Schuyler's carefree attitude. If she's not worried, why should we be? It has always felt to me, however, that her happiness has a price, and if we are to elevate her above fear and worry, we do so while standing knee-deep in it.
I love the person Schuyler is becoming. I love her fearlessness, and I love her punky attitude. I love that given a choice between girly pink and camouflage, she'll unhesitatingly wear both at the same time. Most of all, I love how she adapts.
We got a call from Schuyler's Box Class teacher today. The class was constructing sentences on their devices, and Schuyler was having a hard time finding the word "but". Impatient with the device's icon tutor, which shows the path to any word you type in, Schuyler stood up, laughing, and pointed to her ass. And then did a little "look at my ass" dance. She found her "but".
The biggest difference between Schuyler and her father? Her unflagging ability to take her monster and dress it up in clown clothes.
28 comments:
Amazing entry.
Jesus Christ, I just burst into tears reading your entry about someone else's blog entry that I hadn't even seen yet.
I always am amazed at the emotional connection you've managed to create to someone whom I've only met a handful of times and who many of your readers have never met at all.
I often think of Schuyler - I know that sounds a bit stalkerish (don't worry I'm safely down here in Australia) - mostly because she sounds like such a cool kid, and I work with "neuro-typical" (or whatever you call them) kids and most of them are so NOT cool at all.
When I grow up, I want to be just like your daughter.
I'm 21.
I think of Schuyler often too - she's just one of those people that stick in your mind. Like if you see sparkly black and pink shoelaces, she springs to mind, for some reason.
If it helps, once I had a dream about here where she was laughing and catching frogs.
I want to grow up to be Schuyler, too.
-Kris/Iselyahna
I've had dreams of Schuyler, too - just kind of dumb stuff, like I was in Texas for some reason and ran into Rob and Schuyler at Children's Palace (kind of a pre-Toys R Us, which I discover apparently does not exist in ccyberspace).
And she does seem to just pop to mind spontaneously sometimes. She's got such an amazing personality and Rob, you describe it so well.
Yep...I too have dreamt of Schuyler. A really weird dream where I could understand what she was saying...and I remember thinking, "What's Rob always going on about, no one can understand her language?!"
FYI, you and Julie were in the dream as well, and were both hella cool ;) ha!
A *LOT* of people tell me that they have "Schuyler talking" dreams, just like I do.
It is odd... I had a dream this week as well! But more positive, I think. For some reason I was traveling in Texas with my mother and some people from high school in a big purple bus (I've never been there) and I remembered, "aha! we should visit Rob!". When I said this to my mother, she said it was too far to go and then I threw a hissy fit until she relented and said we could. We showed up and all went out for nachos and beer... my mother, Rob, Julie, and Schuyler and some people from High School who I haven't seen in like 15 years. I just woke up confused, rather than sad! :P
A wonderful entry. And just one more example of how much your blog has touched other people.
Debbie
(of Blatherings.com...Blogger seems to have changed to automatically take my Google account instead)
Last night I dreamed that people were asking whether you can get a peron's DNA from their vomit. No one in the Rummel-Hudson family was in the dream (nor do I remember every hosting them in my dreams but I'd be glad to do it). I think the dream was the result of (a) too many crime shows; and (b) seeing a documentary about taking the bar exam where someone recounted that someone vomited next to them during the test and no one took heed and just continued writing.
It's always funny when kids adapt language. A million years ago, I came home to find my son waving his hands around. It turns out that Sesame Street had introduced a signing character and he wanted to sign.
I taught him the only two things I knew at the time, "I love you" and "I think you stink".
After a minute or so, the wheels turned inside his little brain, and he signed, "I love stink!" and he giggled like a banshee.
His mother was mortified, but I understood what had just happened: he took two ideas in a new expressive medium and combined them to make a different idea.
Schuyler did something very similar, and I think that's very cool. She's a thinker. And, she's learning grammar and sentence structure.
I had a dream about Schuyler a few nights ago. They'd made a movie about her, rather than a book, and there was some sort of documentary footage in which, yes, I could understand her.
She was debating the resale value of a house you were considering buying. (And, yes, she was about six or seven in the dream, but she argued very eloquently that she just didn't think it was a good investment.)
So I'm not the only one who's dreamed about Schuyler. Wow.
Weird, in a way, that one little kid could touch so many people, but very cool too.
It's what parents do, though; shoulder the worry and fears so our kids can have a carefree, butterfly life.
This was great - the post and the comments that followed.
Rob, this is an amazing entry once again. And add me to the "had a dream about Schuyler and Rob club" I saw you guys at Costco of all things....can't remember the details now, but it was a few weeks ago....the internet is weird, no?
Kiss that girl for us, Rob.
And in case you're wondering, whenever I tell my hubby about an entry of yours, you're the "Thanks for the quality poping" guy. :) Best line EVAH!
XOXOXO
You know, if she's making the connection between "but" and "butt," I don't think you have to worry about her ability to handle school at all. I'm no linguistics expert, but I think that's a pretty advanced concept. I also think the fact that she's impatient with the box is a good sign. Her mind is working.
When the teacher mentioned the but/butt substitution- what was her take on it? Admiring? Admonitive (is that a word?)? Just curious.
The teacher called as soon as it happened. She said that she and the other teacher in the room had to quickly turn away so Schuyler wouldn't see them laughing. (Schuyler feeds on laughter and attention. I wonder where she got that?) Schuyler's teacher is great, she totally understands the significance of moments like that.
Last year, when Schuyler and her little girl-crush friend blew off the class activity to huddle in the back of the class jabbering away to each other on a shared device, the teacher didn't interrupt them or make them come back to the class activity. She snapped a photo of them and then let them continue on their own. She's a good teacher, and even more important, she gets Schuyler and her classmates.
I'm so happy for Schuyler that she's got a teacher who "gets" the important stuff. Teachers like that are born, not made, and they're as rare as rocking-horse poo...
I have never had a dream about Schuyler, but I think about her often, and always whenever I see stripy tights, or purple clothes– and sometimes when I listen to "the Milk-eyed Mender" because you once said that was how her voice sounds in your dreams.
Worrying, or having nightmares, is the lot of a parent. I still remember a bad nightmare I had when our daughter was small,which I won't describe, and one about a young soldier leaving home, which freaked me out when our son was a toddler.
Dreams are powerful stuff. Dream good dreams!
i'd like to reiterate that i can't believe how old/big she's gotten. yowza! thanks for making me feel old at 23, schuyler.
entries like this one make me beam with pride for y'all. :) i so clearly remember the stages where schuyler was being diagnosed and you were trying to figure out what it all meant - being a father, period, AND being a father whose kid is facing congenital bilateralWHAT?! i think, rob, that spending the last six years becoming an astrophysicist would've been less daunting. the personal growth you've made is astonishing.
i'm waiting for your book with bated breath.
[/end oprah] ;)
I can't believe how fast she's growing! It ocurred to be recently that you haven't referred to her as "the Chubbin" in a long time. Just curious- was that a conscious choice, i.e. she's getting older and might be less enthused about a knickname? or she's getting older and it really not longer applies as she's grown taller? None of my business, just curious. My dad stopped calling me "the Bubbelah" in public around the same age, but I was a cringey self-conscious sort of kid who desperately worried about what people thought.
Not a conscious choice, just doesn't seem to fit anymore, I guess.
You're quite a man, RR-H. And your daughter is amazing as well. If karma exists, and I believe it does, some absolutely phenomenal and wonderful things are headed your family's way.
Donna Said:
I have also dreamt about Schuyler, and we were both wearing the stripy sweater with the hood, I got mine at old navy in the kids section in xl so it actually fit me. And then I saw pictures of her in it, and then I dreamed that I met her and we both pointed at each other's sweater.
And every time you don't blog for a week or so, all of us out here freak that she's had a seizure, (just so you know), so no pressure to write often or anything!
People tend to be careless when typing vs. face to face.. My daughter has a classmate w/severe seizure disorder and she's a far cry from dying.. Actually she's on this special diet that Childrens Hosp. here in Boston is using. It doesnt have a perfect success rate YET it works VERY WELL 4 her ~ from 6 to 12 seizures a day down to 1 or none.. Only trouble is it doesnt work for everyone & is VERY fatty! The seizure rxs made her throw up alot which isnt healthy. Take Care you have a GREAT blog :)
The contrast between "Damocles" and the little pink sandals just undoes me. Beautifully written, Rob. Just beautiful. What a kid.
We have a lot in common.
It is too weird for words at the moment. I too have a son without a voice.
Wanted to share with you this poem..
The Little Mute Boy
by Federico GarcÃa Lorca
Translated by W. S. Merwin
The little boy was looking for his voice.
(The king of the crickets had it.)
In a drop of water
the little boy was looking for his voice.
I do not want it for speaking with;
I will make a ring of it
so that he may wear my silence
on his little finger
In a drop of water
the little boy was looking for his voice.
(The captive voice, far away,
put on a cricket's clothes.)
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