Well, it's Easter, a holiday that falls on a Sunday, so you're even less likely to be reading this than usual. In fact, I'll bet no one's reading this but me. I am all alone. I could take off my pants and you wouldn't even know it. Ahhh. Much more comfortable.
Not being Christians, Easter isn't a big day for us. It's funny how many people ask us if we celebrate Easter anyway. You know, for Schuyler. And I suppose it's a fair question, since we celebrate Christmas, or at least the holiday season. (Now that I'm not in retail, it's going to be harder to wage the War on Christmas with my insidious "Happy holidays" greeting.)
I guess the big difference is that Christmas celebrates hope and peace and harmony and good stuff that even us heathens can get behind. Easter's harder to explain. "Yeah, we killed Jesus, but he didn't hold it against us, and then he turned into a zombie, the Greatest Zombie of All, and so we play with rabbits and chickens and eat chocolate eggs. Any questions?"
I suppose we could make it about the beginning of spring, but in Texas, that happens in February. Springtime in Texas means that the hot steering wheel starts to make you cry again.
So yeah, it's complicated being an agnostic at Easter, but that doesn't mean the rest of you can't have a fun day. Julie works today, so I'll spend the day with Schuyler, probably playing with the baby ducks outside (a very Easterly behavior) or watching King Kong again, which is only like Easter in that we've watched it like seventy times since we got it, so it's sort of like he keeps getting resurrected.
Anyway, whether you are celebrating the beginning of spring or the day when Christ rolled back the stone, stepped out and saw his shadow (Damn, another six weeks of winter!), I hope you have a nice day today. It's the one day of the year you can probably wear pastels without getting your ass kicked and your lunch money stolen, although really, why take that chance?
(Note: If you were offended by this entry, I really do apologize. I'm just having a little fun. If it makes you feel better, imagine me in the Lake of Fire, drinking Diet Coke and listening to conservative talk radio for all eternity. Welcome to Hell, here's your accordion...)
April 16, 2006
April 14, 2006
Talking about stuff
I got interviewed!
The site is a diabetic blog, and so most of the questions were about my own experiences with the Beedies. I've done some interviews in the past where the questions made me cringe, but this time around I really liked them, and I tried to answer them as honestly as I could. I don't think I came across as particularly knowledgeable, which of course is sadly accurate, but at the very least I hope I seemed like a nice enough guy who might just get his diabetic crap together before someone has to saw off his feet. In any case, I was very pleased with how it turned out, and it might just lead to some more cool stuff. I'm being vague about that last bit because I know it pisses you off.
It's been a weird few days for me. Yesterday I had an outright bad day. I keep reading that it's bad for diabetics to skip meals, and yesterday I discovered that yes, it is in fact not a good idea for diabetics, or at least this diabetic, to go all day without eating. About the time I left work for the long drive home, my energy dropped dramatically, my feet started to feel like someone was stabbing them with knives, and I got dizzy. As soon as I walked in the door, I fell on the bed and passed out for about half an hour.
Julie found me and (with some effort) woke me up, and I groggily took my blood sugar, expecting it to be badly elevated. Weirdly, though, it was unusually low, almost where it was supposed to me. I had dinner and almost instantly felt much better. I have no idea what happened, although I am pretty sure it was high and then dropped like crazy for some reason. What reason? Who the hell knows? Not me.
So yeah, my body has become a mysterious and hostile organism. Today I didn't mess around. I had breakfast, lunch and dinner, and I got some exercise with Schuyler, who was home from school thanks to the kickoff of Zombie Jesus Weekend. I bought her a little pink soccer ball for three bucks, and it was worth every one of those three hundred pennies. I feel normal tonight, healthy even.
So there's one more bit of advice that didn't make it into the interview. Eat some damn food.
The site is a diabetic blog, and so most of the questions were about my own experiences with the Beedies. I've done some interviews in the past where the questions made me cringe, but this time around I really liked them, and I tried to answer them as honestly as I could. I don't think I came across as particularly knowledgeable, which of course is sadly accurate, but at the very least I hope I seemed like a nice enough guy who might just get his diabetic crap together before someone has to saw off his feet. In any case, I was very pleased with how it turned out, and it might just lead to some more cool stuff. I'm being vague about that last bit because I know it pisses you off.
It's been a weird few days for me. Yesterday I had an outright bad day. I keep reading that it's bad for diabetics to skip meals, and yesterday I discovered that yes, it is in fact not a good idea for diabetics, or at least this diabetic, to go all day without eating. About the time I left work for the long drive home, my energy dropped dramatically, my feet started to feel like someone was stabbing them with knives, and I got dizzy. As soon as I walked in the door, I fell on the bed and passed out for about half an hour.
Julie found me and (with some effort) woke me up, and I groggily took my blood sugar, expecting it to be badly elevated. Weirdly, though, it was unusually low, almost where it was supposed to me. I had dinner and almost instantly felt much better. I have no idea what happened, although I am pretty sure it was high and then dropped like crazy for some reason. What reason? Who the hell knows? Not me.
So yeah, my body has become a mysterious and hostile organism. Today I didn't mess around. I had breakfast, lunch and dinner, and I got some exercise with Schuyler, who was home from school thanks to the kickoff of Zombie Jesus Weekend. I bought her a little pink soccer ball for three bucks, and it was worth every one of those three hundred pennies. I feel normal tonight, healthy even.
So there's one more bit of advice that didn't make it into the interview. Eat some damn food.
April 11, 2006
Welcome to America
There's been so much in the news lately about the proposed immigration legislation being debated in Washington, especially a House bill approved in December that would have made it a felony both to be in the country illegally and even to provide charitable assistance to illegal immigrants. There's been a lot of talk about enforcing the laws we have and making sure the immigrants follow the rules we have in place, and it reminded me of a case in which our laws were successfully enforced and the system worked.
The case in point involved a large group of immigrants who were trying to get into this country despite the fact that most of them didn't speak English and they had no jobs or families waiting for them. Most of them had applied for visas to enter the country, but they chose not to wait before starting their journey to the United States.
After a protracted legal battle, however, the State Department told these immigrant wannabes that they had to "await their turns on the waiting list and then qualify for and obtain immigration visas before they may be admissible into the United States." They were sent back to their point of origin to await the legal process in order to become American citizens according to the rules.
So it was that after getting so close to their American goal that they could see the lights of Miami from the deck of the German transatlantic liner St. Louis, over nine hundred Jewish refugees from Germany and eastern Europe were returned to Europe in 1939 after attempting to enter the United States by way of Cuba after fleeing the Third Reich.
Despite appeals by the American Jewish Joint Distribution Committee, President Roosevelt chose not to issue an executive order admitting the refugees, and the 1924 Immigration Act was enforced. The passengers eventually made their way to Belgium and were relocated to refugee centers in various European countries, many of which eventually fell under German occupation. A number of the passengers of the St. Louis were eventually granted their American visas; many of them had already disappeared into the camps by that time.
Look, I'm not telling you what to believe about the current immigration debate. I'm not entirely sure how I feel about it myself, to be perfectly honest. And I'm not saying that the situations faced by European Jews in the 1930s is even remotely the same as that faced by Central American and Asian immigrants today. It's not the same at all, although extreme Third World poverty is certainly its own kind of tyranny.
My point is simply that if we approach this issue simply as one of law and protection of some perceived notion of American status quo, we ignore the human factor. We miss the whole reason that so many people risk so much to try to make a future in this country. In missing that, we miss what it really means to be an American. And unless we live on a reservation, our ancestors probably wouldn't be too thrilled with us for that.
The case in point involved a large group of immigrants who were trying to get into this country despite the fact that most of them didn't speak English and they had no jobs or families waiting for them. Most of them had applied for visas to enter the country, but they chose not to wait before starting their journey to the United States.
After a protracted legal battle, however, the State Department told these immigrant wannabes that they had to "await their turns on the waiting list and then qualify for and obtain immigration visas before they may be admissible into the United States." They were sent back to their point of origin to await the legal process in order to become American citizens according to the rules.
So it was that after getting so close to their American goal that they could see the lights of Miami from the deck of the German transatlantic liner St. Louis, over nine hundred Jewish refugees from Germany and eastern Europe were returned to Europe in 1939 after attempting to enter the United States by way of Cuba after fleeing the Third Reich.
Despite appeals by the American Jewish Joint Distribution Committee, President Roosevelt chose not to issue an executive order admitting the refugees, and the 1924 Immigration Act was enforced. The passengers eventually made their way to Belgium and were relocated to refugee centers in various European countries, many of which eventually fell under German occupation. A number of the passengers of the St. Louis were eventually granted their American visas; many of them had already disappeared into the camps by that time.
Look, I'm not telling you what to believe about the current immigration debate. I'm not entirely sure how I feel about it myself, to be perfectly honest. And I'm not saying that the situations faced by European Jews in the 1930s is even remotely the same as that faced by Central American and Asian immigrants today. It's not the same at all, although extreme Third World poverty is certainly its own kind of tyranny.
My point is simply that if we approach this issue simply as one of law and protection of some perceived notion of American status quo, we ignore the human factor. We miss the whole reason that so many people risk so much to try to make a future in this country. In missing that, we miss what it really means to be an American. And unless we live on a reservation, our ancestors probably wouldn't be too thrilled with us for that.
April 9, 2006
A Different Kind of Normal
I forget who it was now (sorry!), but a few months ago someone pointed me to a new parenting magazine called Wondertime that contained a series of stories about a special needs family and how they cope with a variety of issues. I decide to give it a try, and the first issue finally arrived. Turns out the magazine only comes out a few times a year, so the issue I got was actually the premier issue.
The story in question is "A Different Kind of Normal", by Charlotte Meryman, a writer who appears to focus largely on parenting and special needs topics. Her series for Wondertime follows a Massachusetts family and their 4 year-old son, Jimmy Foard, who has a rare genetic disorder called Alfi's symdrome and also autism spectrum disorder.
I am particularly interested in this series because in the next installment, Meryman will explore Jimmy's quest to find his own voice, through speech therapy and an augmentative alternative communication device, possibly one like Schuyler's Big Box of Words.
The magazine may be hard for you to find, and there's not yet an online edition you can read, but the story is worth taking the trouble to find and read, not only if you're a special needs parent, but also for anyone who wants to understand what we go through.
The opening paragraphs in particular articulate perfectly one of the more heartbreaking aspects of socializing a broken child.
The moment she reads "Dress as a Superhero" on the invitation, Michelle Foard is sure her 4-year-old son, Jimmy, is headed for yet another birthday party disaster. "They'll have," Michelle guesses, "all the things he doesn't like." Like the dreaded bounce house. With his low muscle tone and poor balance, Jimmy hates being jostled on such a billowy surface. Or an arts and crafts table. It's too frustrating; Jimmy's fingers never seem to do what he wants them to do. The way things usually unfold, when no activities click for him, is that Jimmy retreats into himself. This pains Michelle and her husband, Jim, for it defeats the purpose of braving the party in the first place: connecting with other kids.
Yet this doesn't stop Michelle from RSVPing a firm yes. They will go, but with one concession: She'll intentionally arrive late in hopes of minimizing his time there. When the day comes, she keeps Jimmy quiet at home all morning to conserve both their energies and fights off a sense of quiet doom. At 3:00, she slips a Superman T-shirt over her son's head, waves good-bye to Jim and their almost 2-year-old, Maddie, and lifts him into his car seat. And they set off.
Michelle is determined that Jimmy go to as many parties as he can now. "Because I figure at some point," she says, "the invitations will stop."
That knowledge, it must be said, is one of the most piercing parts of parenting a child with special needs. Differences may not matter much to preschoolers, but as kids grow up and friendships cement, the child who can't easily play with others becomes the child who gets left out. Jimmy has been asked to a few playdates, but already Michelle has noted that unless the mom is a friend of hers, "there's no repeat."
The story in question is "A Different Kind of Normal", by Charlotte Meryman, a writer who appears to focus largely on parenting and special needs topics. Her series for Wondertime follows a Massachusetts family and their 4 year-old son, Jimmy Foard, who has a rare genetic disorder called Alfi's symdrome and also autism spectrum disorder.
I am particularly interested in this series because in the next installment, Meryman will explore Jimmy's quest to find his own voice, through speech therapy and an augmentative alternative communication device, possibly one like Schuyler's Big Box of Words.
The magazine may be hard for you to find, and there's not yet an online edition you can read, but the story is worth taking the trouble to find and read, not only if you're a special needs parent, but also for anyone who wants to understand what we go through.
The opening paragraphs in particular articulate perfectly one of the more heartbreaking aspects of socializing a broken child.
The moment she reads "Dress as a Superhero" on the invitation, Michelle Foard is sure her 4-year-old son, Jimmy, is headed for yet another birthday party disaster. "They'll have," Michelle guesses, "all the things he doesn't like." Like the dreaded bounce house. With his low muscle tone and poor balance, Jimmy hates being jostled on such a billowy surface. Or an arts and crafts table. It's too frustrating; Jimmy's fingers never seem to do what he wants them to do. The way things usually unfold, when no activities click for him, is that Jimmy retreats into himself. This pains Michelle and her husband, Jim, for it defeats the purpose of braving the party in the first place: connecting with other kids.
Yet this doesn't stop Michelle from RSVPing a firm yes. They will go, but with one concession: She'll intentionally arrive late in hopes of minimizing his time there. When the day comes, she keeps Jimmy quiet at home all morning to conserve both their energies and fights off a sense of quiet doom. At 3:00, she slips a Superman T-shirt over her son's head, waves good-bye to Jim and their almost 2-year-old, Maddie, and lifts him into his car seat. And they set off.
Michelle is determined that Jimmy go to as many parties as he can now. "Because I figure at some point," she says, "the invitations will stop."
That knowledge, it must be said, is one of the most piercing parts of parenting a child with special needs. Differences may not matter much to preschoolers, but as kids grow up and friendships cement, the child who can't easily play with others becomes the child who gets left out. Jimmy has been asked to a few playdates, but already Michelle has noted that unless the mom is a friend of hers, "there's no repeat."
Red
Schuyler wanted red hair.
Schuyler got red hair. Holy crap.
This week we received a letter from her school, informing us that there is a proposal to go to school uniforms next year. The letter included a ballot for every household to vote and return to the school. Our problem is that we are not in agreement on the issue. Julie thinks it's a good idea; I am completely unconvinced.
Any thoughts?
Schuyler got red hair. Holy crap.
This week we received a letter from her school, informing us that there is a proposal to go to school uniforms next year. The letter included a ballot for every household to vote and return to the school. Our problem is that we are not in agreement on the issue. Julie thinks it's a good idea; I am completely unconvinced.
Any thoughts?
April 6, 2006
Something to think about
I was reading an article in Child Magazine this morning that I thought was interesting. According to the article, there is new evidence to suggest that spanking your kids does more harm than good, regardless of the culture in which you live.
Researchers at the Center for Child and Family Policy at Duke University studied 366 mothers and children in China, India, Italy, Kenya, the Philippines and Thailand. They found that even in those countries where spanking is the cultural norm, the kids who are often physically disciplined are more likely to be anxious and aggressive than those who received either less physical punishment or none at all.
"Children imitate their parents," says lead study author Jennifer Lansford, Ph.D. "If their parent uses hitting to deal with a situation, children think it's okay for them to do it, too."
Paradoxically, this effect may be even more pronounced in places like the United States where spanking is no longer considered to be part of the cultural norm of parenting. "If a child knows most of her friends are spanked, it may feel less strange or frightening," says Dr. Lansford. "But if it isn't the norm, she may feel rejected by her parents or imagine she's a bad kid."
Researchers at the Center for Child and Family Policy at Duke University studied 366 mothers and children in China, India, Italy, Kenya, the Philippines and Thailand. They found that even in those countries where spanking is the cultural norm, the kids who are often physically disciplined are more likely to be anxious and aggressive than those who received either less physical punishment or none at all.
"Children imitate their parents," says lead study author Jennifer Lansford, Ph.D. "If their parent uses hitting to deal with a situation, children think it's okay for them to do it, too."
Paradoxically, this effect may be even more pronounced in places like the United States where spanking is no longer considered to be part of the cultural norm of parenting. "If a child knows most of her friends are spanked, it may feel less strange or frightening," says Dr. Lansford. "But if it isn't the norm, she may feel rejected by her parents or imagine she's a bad kid."
April 4, 2006
Parade
I'm sitting in McDonald's Playland here in charming North Dallas, Texas. (Not entirely sure which one, either. I live in a world of interchangeable North Dallas suburbs.) I'm watching Schuyler play, and interact with the other kids, and it's fascinating.
She starts off trying to play with three little pretty princesses, all of them carrying orange-haired little dolls from their Happy Meals. Schuyler's possession of an idential doll does not seem to be granting her entrance into their circle, however, and for a good ten minutes I watch her chase them around as they intentionally shun her, turning their backs on her and running away when she tries to talk to them. I can't make out the words they're saying to her, but the tone is unmistakably unkind.
Schuyler's a little doll herself, you know, and she either doesn't realize they are blowing her off, or she just doesn't give a shit.
She takes it in stride, I do not. It's hard, watching little girls be little girls to each other, which often means being horrible little shits. (For the adult version, go visit any Attached Parenting discussion forum.) I want to interfere, I want to say mean things to these little girls and make them run off crying, just for shunning the Chubbin. I don't. I sit here and I watch.
And when I sit and watch long enough, I see the thing that often happens with Schuyler. I see her shrug it off and play with other kids, and I see her begin to attract a little following, the kids who see that she's different but don't yet know enough to treat her like a freak. They'll learn one day, I'm afraid, but not just yet. I see the Schuyler Pied Piper Effect kick in, and before long I'm watching the little mob that inevitably ends up following her, like she's the strange mute drum major in the Weird Kids Parade.
Then it happens. The snotty little princesses that treated her like a leper half an hour ago want to play with her now. She has popularity, and they want some of it.
And to her inexhaustible credit, Schuyler lets them, without hesitation. I am a tiny bit frustrated that they are getting away with it, but I am mostly proud of her for being a bigger person than any of us.
Earlier, we were at the drugstore and she repeated a refrain that's been going for about a week now. Although this photo makes it look otherwise, Schuyler's hair color has faded, as it was supposed to (although, and this is important, not completely), and she wants it redone, this time in red.
"I want red hair." She's been saying it for about a week now.
We went to the aisle where we picked up the last hair color experiment (L'Oreal Color Pulse Concentrated Non-Permanent Color Mousse, for those of you who care, and I assume that's everyone), and she immediately grabbed the one she's been looking at every time we go in. This time it's "Red Pulse", and by golly, it's RED. Nothing subtle here.
So fine, no problem. No ammonia, no peroxide, washes out in eight to ten shampoos (except that it totally doesn't), safe for your hair and loads of fun. There's just one problem this time. She made a special request at a father/daughter bonding exercise.
"Red hair Daddy."
I'm not accustomed to denying Schuyler her requests, particularly the ones she makes on her device. But, um, this might have to be the first.
Well, okay. Maybe just a hint of red. Maybe. She did ask nicely.
She starts off trying to play with three little pretty princesses, all of them carrying orange-haired little dolls from their Happy Meals. Schuyler's possession of an idential doll does not seem to be granting her entrance into their circle, however, and for a good ten minutes I watch her chase them around as they intentionally shun her, turning their backs on her and running away when she tries to talk to them. I can't make out the words they're saying to her, but the tone is unmistakably unkind.
Schuyler's a little doll herself, you know, and she either doesn't realize they are blowing her off, or she just doesn't give a shit.
She takes it in stride, I do not. It's hard, watching little girls be little girls to each other, which often means being horrible little shits. (For the adult version, go visit any Attached Parenting discussion forum.) I want to interfere, I want to say mean things to these little girls and make them run off crying, just for shunning the Chubbin. I don't. I sit here and I watch.
And when I sit and watch long enough, I see the thing that often happens with Schuyler. I see her shrug it off and play with other kids, and I see her begin to attract a little following, the kids who see that she's different but don't yet know enough to treat her like a freak. They'll learn one day, I'm afraid, but not just yet. I see the Schuyler Pied Piper Effect kick in, and before long I'm watching the little mob that inevitably ends up following her, like she's the strange mute drum major in the Weird Kids Parade.
Then it happens. The snotty little princesses that treated her like a leper half an hour ago want to play with her now. She has popularity, and they want some of it.
And to her inexhaustible credit, Schuyler lets them, without hesitation. I am a tiny bit frustrated that they are getting away with it, but I am mostly proud of her for being a bigger person than any of us.
Earlier, we were at the drugstore and she repeated a refrain that's been going for about a week now. Although this photo makes it look otherwise, Schuyler's hair color has faded, as it was supposed to (although, and this is important, not completely), and she wants it redone, this time in red.
"I want red hair." She's been saying it for about a week now.
We went to the aisle where we picked up the last hair color experiment (L'Oreal Color Pulse Concentrated Non-Permanent Color Mousse, for those of you who care, and I assume that's everyone), and she immediately grabbed the one she's been looking at every time we go in. This time it's "Red Pulse", and by golly, it's RED. Nothing subtle here.
So fine, no problem. No ammonia, no peroxide, washes out in eight to ten shampoos (except that it totally doesn't), safe for your hair and loads of fun. There's just one problem this time. She made a special request at a father/daughter bonding exercise.
"Red hair Daddy."
I'm not accustomed to denying Schuyler her requests, particularly the ones she makes on her device. But, um, this might have to be the first.
Well, okay. Maybe just a hint of red. Maybe. She did ask nicely.
The Seedy Side of eBay
I finally listed my used Vans and Chuck Taylors on eBay this weekend. It's the first time I've ever listed something on eBay, but I believe I got it mostly right. I think I was pretty straight-forward in my descriptions of the shoes. I don't think anyone is going to open a box and say "Hey, wait a minute. These aren't new!"
Here's what you won't see there, however. There are two pairs of shoes that I listed that I described as "well worn". I didn't pull any punches about their condition, but I listed them because in both cases, when I've worn them in public, I've had people ask about them and tell me that they aren't in production anymore. One of them, a pair of black checkered Vans high tops (yeah, Vans, not Converse) have been especially coveted.
When I went to eBay check on how things were going, I found that these shoes had been deleted. I wasn't 100% shocked, since I know they have rules about the condition of used clothes that are being sold, and while I've seen some nasty nasty stuff listed on eBay, these were pretty worn out shoes I was listing.
What puzzled me was the reason for the deletion, which occurred due to "miscategorization":
Materials adult in nature or otherwise not appropriate for minors (individuals under 18 years of age) may only be listed in eBay's Mature Audiences area.
Wow. It didn't even occur to me to market directly to that lucrative shoe fetish crowd.
Here's what you won't see there, however. There are two pairs of shoes that I listed that I described as "well worn". I didn't pull any punches about their condition, but I listed them because in both cases, when I've worn them in public, I've had people ask about them and tell me that they aren't in production anymore. One of them, a pair of black checkered Vans high tops (yeah, Vans, not Converse) have been especially coveted.
When I went to eBay check on how things were going, I found that these shoes had been deleted. I wasn't 100% shocked, since I know they have rules about the condition of used clothes that are being sold, and while I've seen some nasty nasty stuff listed on eBay, these were pretty worn out shoes I was listing.
What puzzled me was the reason for the deletion, which occurred due to "miscategorization":
Materials adult in nature or otherwise not appropriate for minors (individuals under 18 years of age) may only be listed in eBay's Mature Audiences area.
Wow. It didn't even occur to me to market directly to that lucrative shoe fetish crowd.
April 2, 2006
The Gift of Quackage
You know, you can go into a weekend with crappy old health problems and brand new health problems and crappy old money concerns and both old and new child worries and inexplicable exhaustion and your old friend depression. A full bag.
But when it's 80 degrees and sunny outside, and there are baby ducks in the pond outside your front door, I can tell you that eventually you're going to grab a bag of saltines, a camera and a happy little jabbery kid, and you're going to go play with the ducks.
Sometimes you need some breaks in life, and you might not get those breaks, at least not right away.
But you get baby ducks, and you appreciate them.
But when it's 80 degrees and sunny outside, and there are baby ducks in the pond outside your front door, I can tell you that eventually you're going to grab a bag of saltines, a camera and a happy little jabbery kid, and you're going to go play with the ducks.
Sometimes you need some breaks in life, and you might not get those breaks, at least not right away.
But you get baby ducks, and you appreciate them.
March 30, 2006
Proof That I Have Become a Senior Citizen
I know this is what old people do, but here's the message I just sent to the Animal Planet Channel, regarding something I just saw on their 100 percent not funny "World's Funniest Animals" show while channel surfing:
I was just watching your "Funniest Animals" program, and the show was having a great big laugh at video of a little white dwarf hamster doing repeated flips. Ha! Hilarious!
Except of course that some dwarf hamsters do this not for fun or amusement, but because they suffer from a genetic disorder. Most of them don't live long, as they become exhausted by their involuntary flipping and eventually die from compromised immune systems.
I wouldn't expect more sensitivity from a generic network program, but you are Animal Planet. You might be the one channel where one might expect a little sympathy towards animals.
I'm disgusted and saddened.
Poor little guy. He was just flipping, about every three seconds. Imagine trying to walk around or eat or lick your little hamster balls or whatever. How can you live your life when every few seconds, you do a backflip?
Fucking Animal Planet.
I was just watching your "Funniest Animals" program, and the show was having a great big laugh at video of a little white dwarf hamster doing repeated flips. Ha! Hilarious!
Except of course that some dwarf hamsters do this not for fun or amusement, but because they suffer from a genetic disorder. Most of them don't live long, as they become exhausted by their involuntary flipping and eventually die from compromised immune systems.
I wouldn't expect more sensitivity from a generic network program, but you are Animal Planet. You might be the one channel where one might expect a little sympathy towards animals.
I'm disgusted and saddened.
Poor little guy. He was just flipping, about every three seconds. Imagine trying to walk around or eat or lick your little hamster balls or whatever. How can you live your life when every few seconds, you do a backflip?
Fucking Animal Planet.
A Million Miles Away
I left New Haven, Connecticut three years ago, in order to be closer to my family while we tried to figure out what to do with Schuyler. Looking back on the decision, it was, in a roundabout way, a very good one. Schuyler's box class wouldn't have been possible in New Haven, whose public schools were woefully unprepared for Schuyler and her monster. Leaving New Haven was the right decision. But it was also a sad one, saddest of all because of the friend I left behind.
I miss Dana. I try not to think about it too much, but she has been one of the closest friends I've ever had, and one of Schuyler's closest, too. I don't tell her enough how much she means to me; I'm not very good at goodbyes, and I probably left far too much unsaid with Dana.
But the thing I need to say most of all today is that I am truly, truly sorry, and that while I have no idea how I'd help if I were still there, I still feel like I'm a million miles away.
I miss Dana. I try not to think about it too much, but she has been one of the closest friends I've ever had, and one of Schuyler's closest, too. I don't tell her enough how much she means to me; I'm not very good at goodbyes, and I probably left far too much unsaid with Dana.
But the thing I need to say most of all today is that I am truly, truly sorry, and that while I have no idea how I'd help if I were still there, I still feel like I'm a million miles away.
March 29, 2006
"Sorry Daddy"
A few days ago, we took Schuyler to the mall for some much needed clothes shopping. While we were there, I found her a multicolored raincoat that was both sale priced and irresistible. When I make my move to conquer the planet, I won't use atomic bombs or mass mind control. I'll simply put Schuyler on television in this raincoat and say, "She'd like the whole world, please." The rest of you will have no choice but to comply, all the while issuing one giant planet-wide "awww..."
Along with the raincoat was a little matching umbrella. While she was mostly indifferent to the Amazing Technicolor World Domination Raincoat, Schuyler lost her mind over the umbrella. We got it for her, of course (because even without the raincoat on, I'm powerless over Schuyler's big anime eyes), and she walked around the mall with it like a dapper English country squire, albeit one who trips over her umbrella now and again.
Well, we made a mistake yesterday. We allowed her to take her umbrella to school, even though we knew better. She rides the bus to school, and then rides another bus after that to her after-school program until we go pick her up. If something doesn't fit inside her backpack, it tends to get left behind at some point. Sure enough, when we picked her up yesterday, she was sans umbrella.
I was pretty irritated with her when we got in the car, and she could tell. My friend Tracy once wrote of Schuyler that...
I don't know if she worships me, but she doesn't like to disappoint, that's very true. I asked her shortly where her umbrella was, and she looked back at me with sad, sad eyes.
"Where is it, Schuyler?" I asked. "Is it at school?" Blank look. I sighed with frustration. "Tell me on your device, then. Where did you leave your umbrella?"
She pulled her Big Box of Words out of her bag and searched for a moment.
"Bus."
"You left it on the bus?" I said. She nodded, her lip sticking out just a bit.
I sat in silence as Julie drove. I heard Schuyler punching buttons on the BBoW. Then she hit the button to speak.
"Sorry."
I looked back at her, but she was searching for another word. She hit the speak button again.
"Sorry Daddy."
Did you hear that sound? That was my heart breaking in two.
Along with the raincoat was a little matching umbrella. While she was mostly indifferent to the Amazing Technicolor World Domination Raincoat, Schuyler lost her mind over the umbrella. We got it for her, of course (because even without the raincoat on, I'm powerless over Schuyler's big anime eyes), and she walked around the mall with it like a dapper English country squire, albeit one who trips over her umbrella now and again.
Well, we made a mistake yesterday. We allowed her to take her umbrella to school, even though we knew better. She rides the bus to school, and then rides another bus after that to her after-school program until we go pick her up. If something doesn't fit inside her backpack, it tends to get left behind at some point. Sure enough, when we picked her up yesterday, she was sans umbrella.
I was pretty irritated with her when we got in the car, and she could tell. My friend Tracy once wrote of Schuyler that...
She worships her father. I don't know if Rob recognizes it as clearly as those of us outside can. Disappointing him causes Schuyler the greatest sadness you've ever seen. Eyes brimming, lip trembling, big shuddering sniffling sobs. It would be fully heart-breaking... if one had not just witnessed the particularly punk-ass behavior that got her in trouble in the first place.
I don't know if she worships me, but she doesn't like to disappoint, that's very true. I asked her shortly where her umbrella was, and she looked back at me with sad, sad eyes.
"Where is it, Schuyler?" I asked. "Is it at school?" Blank look. I sighed with frustration. "Tell me on your device, then. Where did you leave your umbrella?"
She pulled her Big Box of Words out of her bag and searched for a moment.
"Bus."
"You left it on the bus?" I said. She nodded, her lip sticking out just a bit.
I sat in silence as Julie drove. I heard Schuyler punching buttons on the BBoW. Then she hit the button to speak.
"Sorry."
I looked back at her, but she was searching for another word. She hit the speak button again.
"Sorry Daddy."
Did you hear that sound? That was my heart breaking in two.
March 27, 2006
Tiny ghosts
I was out taking some photos for work this afternoon and decided to take a walk to one of my favorite spots on campus. When I was a student here, I found the spot completely by accident one day while I was out exploring the campus, and to this day I have never seen a mention of this place in print or heard another human being speak of it. I mentioned it to the grad student in my office, and he knew nothing about it at all, even though it's only about half a block away. Almost no one on campus seems to know about it, despite the fact that all that separates it from the main administrative campus building is a parking lot, a street, and about twenty yards across a small creek.
About a hundred years ago, the Berachah Industrial Home was established on what is now this campus for the protection of homeless girls and unwed mothers. (Contemporary accounts referred to them as "wild girls".) At the time, there were ten buildings, including a print shop for the publication of the Purity Journal. (I'll bet that was a fun read.) Now, the only thing remaining is the cemetery, which contains about eighty graves and dates from 1904. The home closed down in the 1930s.
Most of the graves are of children, and are marked by a simple flat stone flush with the ground. Some of them are engraved with antique-sounding names like Ruth or Pearl, but most are simply marked with the word "infant" and a number. As melancholy as most cemeteries are, this one might be the saddest one in the world.
It's not a raw, immediate kind of sad. If these babies had survived, they would almost certainly have died long ago, maybe after living long, eventful lives. They would have been almost middle-aged by the time World War II began, after all. All the same, there's a heavy feeling of "Might Have Been" in the air, and if there are ghosts lurking in those quiet trees, they are very tiny ghosts indeed.
When I was a student, I would go out to the cemetery when I needed to escape or think or just be alone. Sometimes I would bring my trombone and play a Bach Sarabande for the Infant No. Whatevers. I haven't been back in over a decade, but I should have known that nothing would have changed.
I needed to go back. I'm sure it won't be the last time.
About a hundred years ago, the Berachah Industrial Home was established on what is now this campus for the protection of homeless girls and unwed mothers. (Contemporary accounts referred to them as "wild girls".) At the time, there were ten buildings, including a print shop for the publication of the Purity Journal. (I'll bet that was a fun read.) Now, the only thing remaining is the cemetery, which contains about eighty graves and dates from 1904. The home closed down in the 1930s.
Most of the graves are of children, and are marked by a simple flat stone flush with the ground. Some of them are engraved with antique-sounding names like Ruth or Pearl, but most are simply marked with the word "infant" and a number. As melancholy as most cemeteries are, this one might be the saddest one in the world.
It's not a raw, immediate kind of sad. If these babies had survived, they would almost certainly have died long ago, maybe after living long, eventful lives. They would have been almost middle-aged by the time World War II began, after all. All the same, there's a heavy feeling of "Might Have Been" in the air, and if there are ghosts lurking in those quiet trees, they are very tiny ghosts indeed.
When I was a student, I would go out to the cemetery when I needed to escape or think or just be alone. Sometimes I would bring my trombone and play a Bach Sarabande for the Infant No. Whatevers. I haven't been back in over a decade, but I should have known that nothing would have changed.
I needed to go back. I'm sure it won't be the last time.
March 26, 2006
No comprende, it's a riddle.
So there I was, at the wedding reception, watching the mariachi band outside the hall warming up and getting ready to walk in.
I snapped a bunch of shots of them, really got some good ones, and was all ready to get more when the leader counted them off and they started to play.
And that's when they walked into the reception for the wedding across the hall from the one I was actually shooting.
I snapped a bunch of shots of them, really got some good ones, and was all ready to get more when the leader counted them off and they started to play.
And that's when they walked into the reception for the wedding across the hall from the one I was actually shooting.
March 25, 2006
Working weekend
Well, we're going to see just how much energy I have.
I shot a wedding yesterday here in Dallas.
I'm about to drive down to Austin this morning, shoot a LONG wedding there, and then come back in the wee hours.
I've been limping around like Verbal Kint but otherwise am feeling okay. I think I feel better when I'm working a wedding. Again, with the exercise. Also, today is the aniversary of the day my father died, which is always kind of a weird day for me, but never more than this year when it suddenly feels a little more immediate. Working will hopefully be a good distraction.
So there it is. Wish me luck, and have a great weekend.
I shot a wedding yesterday here in Dallas.
I'm about to drive down to Austin this morning, shoot a LONG wedding there, and then come back in the wee hours.
I've been limping around like Verbal Kint but otherwise am feeling okay. I think I feel better when I'm working a wedding. Again, with the exercise. Also, today is the aniversary of the day my father died, which is always kind of a weird day for me, but never more than this year when it suddenly feels a little more immediate. Working will hopefully be a good distraction.
So there it is. Wish me luck, and have a great weekend.
March 22, 2006
Ugh.
Hey, you know how sometimes you just feel down? Like all the little bullshit life things just catch up to you all at once?
That's sort of how I'm feeling these days, on top of not physically doing as well as I want to be.
You know, I joke about being old, fat and drunk, and eating a bunch of crap, but the truth is that according to Dr. Hottie and the diabetes literature, I'm relatively young for diabetes, I only need to lose about twenty pounds, and my diet? Well, yeah, that was pretty bad, but I've never smoked and I haven't been a big drinker for a few years.
All of this is good in the sense that being old and fat is generally considered to be a Bad Thing. I'm no doctor, but ask any old fat person and I'll bet they'll tell you it sucks.
But the bad thing is that my diabetes is probably mostly due to genetics, according to my doctor. (And don't forget, she's hot, so you know she can be trusted.) My father died from his, despite the fact that he was slim and athletic, never smoked and drank only occasionally, in that Texas good ol' boy, "drink a beer while watching the ballgame" sort of way. He was the quarterback in high school and was a coach until the day he died, and yet his diabetes and his heart killed him at the age of 51.
My point is not to be all maudlin about my father (although I get that way this time of year, near the anniversary of his death), but rather to point out that if I were diabetic solely because of my unhealthy lifestyle, I could just change my lifestyle and go a long way towards getting healthy. This might be trickier than I thought, though. Changing the way I live is going to help, but it might not have the drastic improvement that I'm hoping for. Keeping my blood sugar down is hard, and it's not down where it should be by now, and I feel a little like I'm swimming upstream.
But I'll keep trying and keep eating better and exercising more and trying to stay positive about my own health even as I continue to try to help Schuyler (who's having some reading problems in school, as we always feared she would, although really, how do they know, you know?). And I'll try to stay positive about every other little personal thing that comes up in the same way they come up for every person in the world.
But I've got to tell you, just here lately, it's been wearing me down. It won't for long; I'm Chumbawamba, you know.
That's sort of how I'm feeling these days, on top of not physically doing as well as I want to be.
You know, I joke about being old, fat and drunk, and eating a bunch of crap, but the truth is that according to Dr. Hottie and the diabetes literature, I'm relatively young for diabetes, I only need to lose about twenty pounds, and my diet? Well, yeah, that was pretty bad, but I've never smoked and I haven't been a big drinker for a few years.
All of this is good in the sense that being old and fat is generally considered to be a Bad Thing. I'm no doctor, but ask any old fat person and I'll bet they'll tell you it sucks.
But the bad thing is that my diabetes is probably mostly due to genetics, according to my doctor. (And don't forget, she's hot, so you know she can be trusted.) My father died from his, despite the fact that he was slim and athletic, never smoked and drank only occasionally, in that Texas good ol' boy, "drink a beer while watching the ballgame" sort of way. He was the quarterback in high school and was a coach until the day he died, and yet his diabetes and his heart killed him at the age of 51.
My point is not to be all maudlin about my father (although I get that way this time of year, near the anniversary of his death), but rather to point out that if I were diabetic solely because of my unhealthy lifestyle, I could just change my lifestyle and go a long way towards getting healthy. This might be trickier than I thought, though. Changing the way I live is going to help, but it might not have the drastic improvement that I'm hoping for. Keeping my blood sugar down is hard, and it's not down where it should be by now, and I feel a little like I'm swimming upstream.
But I'll keep trying and keep eating better and exercising more and trying to stay positive about my own health even as I continue to try to help Schuyler (who's having some reading problems in school, as we always feared she would, although really, how do they know, you know?). And I'll try to stay positive about every other little personal thing that comes up in the same way they come up for every person in the world.
But I've got to tell you, just here lately, it's been wearing me down. It won't for long; I'm Chumbawamba, you know.
March 21, 2006
Punkass 2.0
As I was taking more photos of my shoes to put them on eBay, Schuyler watched for a few minutes and then went and grabbed her pair of high tops and presented them for photographic documentation.
it's comforting to know that a family tradition of fun shoes has been passed on.
Someone at school has apparently taught her "Rock Paper Scissors", and she insists on playing it any time we are sitting down together, usually over dinner. She's a cheater, though. She waits a split second after you throw down your choice and then reacts accordingly. Also, her paper and her scissors looks suspiciously alike, so she can change at a moment's notice if she has to.
Punk.
it's comforting to know that a family tradition of fun shoes has been passed on.
Someone at school has apparently taught her "Rock Paper Scissors", and she insists on playing it any time we are sitting down together, usually over dinner. She's a cheater, though. She waits a split second after you throw down your choice and then reacts accordingly. Also, her paper and her scissors looks suspiciously alike, so she can change at a moment's notice if she has to.
Punk.
An All Star no more
The end of an era is nigh. I'm getting rid of my crazy cool hipster shoes.
A few years ago, back when we lived in Connecticut and I had a fancy university job (well, at least that's come full circle), I wrote an entry about my shoe love. There was a time when all I wore were fun tennis shoes, mostly Converse Chuck Taylors and Vans. They were the item of choice when I was in need of retail therapy, and they gave me the illusion of youth. Say what you will about me, but I was a Fun Shoe Guy.
I haven't been able to wear my Chuck Taylors for about a year now, not for any length of time, and since I got my diagnosis, I now know why. I've recently embraced the Way of the Gimp Shoe, although I went with the New Balance which, in addition to being doctor-approved for younger beedies patients with early onset neuropathy issues, are cheaper and much less sad and gimply than the actual medical diabetic shoes. I now have two pairs of shoes that I can wear, as well as my old ugly leather slip-ons. And that's cool, I can deal with that. If I can quit drinking, I can quit wearing fun shoes. (As for the drinking thing, my pancreas is an evil little monster for taking away my booze. Just so you know. I'm a hoot at social gatherings now, trust me.)
The problem for me is that having all my old shoe friends sitting in the closet is both a sad reminder of better days and an unhealthy temptation. The few times I've tried to wear a pair of Chucks or Vans just for old times sake have ended in limping sorrow.
Someone suggested that I try to sell them on eBay, which I thought was both funny and a little nasty. Remember that part about how I wore them almost every day of my life? Even spread out among half a dozen pairs of Chucks and four pairs of Vans, that's still a lot of time spent on my big feet. Even given the fact that I wasn't exactly out there playing basketball in them, we're still talking about shoes that aren't even remotely new.
But I went on eBay, and sure enough, people are selling nasty old Chuck Taylors. I think the key word they all use is "vintage", which in some cases means that they are shoes from like the 60s that haven't been in production for years and would be of interest to collectors. But a lot of the ones I looked at were clearly just used. Still, people are out there buying them.
So sure, I'll give it a shot. I've never sold anything on eBay, but then I never had a hot item like smelly, old, freakishly large, extremely distressed, VINTAGE tennis shoes to offer, either.
A few years ago, back when we lived in Connecticut and I had a fancy university job (well, at least that's come full circle), I wrote an entry about my shoe love. There was a time when all I wore were fun tennis shoes, mostly Converse Chuck Taylors and Vans. They were the item of choice when I was in need of retail therapy, and they gave me the illusion of youth. Say what you will about me, but I was a Fun Shoe Guy.
I haven't been able to wear my Chuck Taylors for about a year now, not for any length of time, and since I got my diagnosis, I now know why. I've recently embraced the Way of the Gimp Shoe, although I went with the New Balance which, in addition to being doctor-approved for younger beedies patients with early onset neuropathy issues, are cheaper and much less sad and gimply than the actual medical diabetic shoes. I now have two pairs of shoes that I can wear, as well as my old ugly leather slip-ons. And that's cool, I can deal with that. If I can quit drinking, I can quit wearing fun shoes. (As for the drinking thing, my pancreas is an evil little monster for taking away my booze. Just so you know. I'm a hoot at social gatherings now, trust me.)
The problem for me is that having all my old shoe friends sitting in the closet is both a sad reminder of better days and an unhealthy temptation. The few times I've tried to wear a pair of Chucks or Vans just for old times sake have ended in limping sorrow.
Someone suggested that I try to sell them on eBay, which I thought was both funny and a little nasty. Remember that part about how I wore them almost every day of my life? Even spread out among half a dozen pairs of Chucks and four pairs of Vans, that's still a lot of time spent on my big feet. Even given the fact that I wasn't exactly out there playing basketball in them, we're still talking about shoes that aren't even remotely new.
But I went on eBay, and sure enough, people are selling nasty old Chuck Taylors. I think the key word they all use is "vintage", which in some cases means that they are shoes from like the 60s that haven't been in production for years and would be of interest to collectors. But a lot of the ones I looked at were clearly just used. Still, people are out there buying them.
So sure, I'll give it a shot. I've never sold anything on eBay, but then I never had a hot item like smelly, old, freakishly large, extremely distressed, VINTAGE tennis shoes to offer, either.
March 19, 2006
Beauty and the Beast
Good lord, Schuyler just saw her first television commercial for the upcoming DVD release of King Kong.
She just lost her little mind.
As soon as she heard him roar, she jumped up from the table and ran over to the television, pointing and yelling and, yes, beating her chest in a most Konglike manner.
Her King Kong love knows no bounds. These days, if you ask her if she's a princess, she says no. You can run down the list of things she might be, and she says no to them all. Finally, ask her what she is, and she'll beat her chest like King Kong and then show with a hand raised high that she is in fact big like Kong, too.
I wrote about her love for King Kong and for dinosaurs and monsters back in November, after the Supreme Court ruled against a group of special needs parents.
It's not just that Schuyler is fearless, although that's definitely true enough. She knows how to pick her friends.
The movie comes out on DVD on March 28th, and I can only assume we'll be seeing a lot of these commercials between now and then.
It's going to be a long week.
She just lost her little mind.
As soon as she heard him roar, she jumped up from the table and ran over to the television, pointing and yelling and, yes, beating her chest in a most Konglike manner.
Her King Kong love knows no bounds. These days, if you ask her if she's a princess, she says no. You can run down the list of things she might be, and she says no to them all. Finally, ask her what she is, and she'll beat her chest like King Kong and then show with a hand raised high that she is in fact big like Kong, too.
I wrote about her love for King Kong and for dinosaurs and monsters back in November, after the Supreme Court ruled against a group of special needs parents.
Schuyler isn't afraid of her monster, because she has monsters of her own that she believes will fight for her. Long ago, when she was just a baby, she became fascinated with a small toy figure of King Kong that I had on a shelf in our living room back in Connecticut. He's fierce, snarling as he busts loose from his chains, a tiny flinching Fay Wray at his feet to give him scale. Schuyler loves King Kong, and when the trailer for the new film became available, she watched it over and over, her little Kong toy watching beside her. She growled with Kong on the screen, recoiled in mock terror at the snapping jaws of a dinosaur, and clapped triumphantly when Kong went on his terrible rampage. You can judge me if you like, but when the movie comes out, I already have a date lined up. I wouldn't dream of seeing Schuyler's hero on the big screen without her.
Inappropriate? Whatever. I truly believe that Schuyler loves princesses and fairies because she wants to be one, but she also loves dinosaurs and monsters and giant angry gorillas because she wants them to be her friends. She knows enough about this grand rough world to pick her allies carefully and extravagantly. She has an enemy monster living in her head, but in her heart of hearts, she has a giant fierce gorilla that will stand behind her like he stands behind Naomi Watts in the trailer, ready to beat his chest and jump into battle against dinosaurs or arrogant administrators or the Supreme Court if they threaten her.
She's looking for a King Kong to help her fight tiny monsters...
It's not just that Schuyler is fearless, although that's definitely true enough. She knows how to pick her friends.
The movie comes out on DVD on March 28th, and I can only assume we'll be seeing a lot of these commercials between now and then.
It's going to be a long week.
March 18, 2006
Lessons
We took Schuyler to a birthday party for one of her little cyborg classmates today. When we got to the restaurant where it was being held (a pizza place called Nick 'n Willy's, but which I can't help but call Naked Willies because I gotta be me), we found the place packed with kids, decorating their little blue aprons with markers and pounding out little blobs of what I hope was fake pizza dough. A few of them were from the Box Class, but mostly they were a bunch of regular, jabbery little kids. (In the Lingo of the Broken, they were what would be referred to as "Neuro-typical". Remember that and impress your friends at your next company picnic.)
The birthday boy himself is one of the more severely affected kids in the class. He's confined to a wheelchair and is only slightly ambulatory. (More lingo; "ambulatory" means you can get around under your own physical control.) I believe he works his Big Box of Words with his head, although I've never actually seen him in action.
Here's why I love Schuyler so much, and why she's a better person than both you and me. When she saw him, she let out a squeal and ran over and kissed him. (One more reason being in a wheelchair is tough: you can't get away from Schuyler's slobbery kisses.)
Schuyler doesn't judge and she doesn't hesitate to love and accept. Every day, in about a hundred different ways, I am so proud of her that my heart swells and breaks a little. She loves the whole world in a way that it will never ever love her back, and that says as much about this grand rough world as it does about her.
She spent the party seated next to her best friend in the world, a little girl named Sara (I've mentioned her before) who is similar in language skills and mobility to Schuyler. I sat and watched them for the entire party, and took about seventy photos of them together (again, I wish I could share them, because they are super cute), and here's what I can tell you about Schuyler and her best friend. They love to laugh. They both got dealt a shit hand by God, and their birthday friend got an even worse hand, and yet for the duration of that party, the three of them laughed and played as hard as a six year-old can laugh and play. The "neuro-typical" kids, for all their words and mobility, couldn't match the three broken box kids in enthusiasm or in sucking every bit of joy out of every minute they had.
Schuyler's monster has taught her a lot of hard lessons, and the hardest ones are probably ahead of her. But sometimes, on days like this when she's laughing with her broken but happy little friends or running and stomping messily in the rain puddles outside, I can see that her monster is teaching her to live her life turned up to eleven. And perhaps she's teaching me the same thing.
Incidentally, as I write this, we're sitting around watching cartoons. The one that's on right now centers around the characters burping. There's a lot of burping going on, as you might imagine, and we're both laughing like monkeys. Schuyler thinks burps are funny, which of course they are, and she keeps fake burping and then making me do it for real. I'm starting to feel a little queasy, to be honest. Performance art is difficult work.
One day, I'll teach her how to make herself burp. It'll be my legacy.
The birthday boy himself is one of the more severely affected kids in the class. He's confined to a wheelchair and is only slightly ambulatory. (More lingo; "ambulatory" means you can get around under your own physical control.) I believe he works his Big Box of Words with his head, although I've never actually seen him in action.
Here's why I love Schuyler so much, and why she's a better person than both you and me. When she saw him, she let out a squeal and ran over and kissed him. (One more reason being in a wheelchair is tough: you can't get away from Schuyler's slobbery kisses.)
Schuyler doesn't judge and she doesn't hesitate to love and accept. Every day, in about a hundred different ways, I am so proud of her that my heart swells and breaks a little. She loves the whole world in a way that it will never ever love her back, and that says as much about this grand rough world as it does about her.
She spent the party seated next to her best friend in the world, a little girl named Sara (I've mentioned her before) who is similar in language skills and mobility to Schuyler. I sat and watched them for the entire party, and took about seventy photos of them together (again, I wish I could share them, because they are super cute), and here's what I can tell you about Schuyler and her best friend. They love to laugh. They both got dealt a shit hand by God, and their birthday friend got an even worse hand, and yet for the duration of that party, the three of them laughed and played as hard as a six year-old can laugh and play. The "neuro-typical" kids, for all their words and mobility, couldn't match the three broken box kids in enthusiasm or in sucking every bit of joy out of every minute they had.
Schuyler's monster has taught her a lot of hard lessons, and the hardest ones are probably ahead of her. But sometimes, on days like this when she's laughing with her broken but happy little friends or running and stomping messily in the rain puddles outside, I can see that her monster is teaching her to live her life turned up to eleven. And perhaps she's teaching me the same thing.
Incidentally, as I write this, we're sitting around watching cartoons. The one that's on right now centers around the characters burping. There's a lot of burping going on, as you might imagine, and we're both laughing like monkeys. Schuyler thinks burps are funny, which of course they are, and she keeps fake burping and then making me do it for real. I'm starting to feel a little queasy, to be honest. Performance art is difficult work.
One day, I'll teach her how to make herself burp. It'll be my legacy.
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