Sirens are generally not a good thing.

Around here, a siren usually means I forgot that I was heating oil on the stove while I ran to put the towels in the dryer…and check facebook…and read a few pages of Good Housekeeping. Luckily, it hasn’t ever gotten further than the smoke alarm sirens– the ones that the mostly-useless-electricians put in that just make a lot of noise, not the ones from the security company that immediately call the fire department. The fact that the immediately-call-the-fire-department ones have never gone off greatly decreases my feeling of fire-safetyishness, truth be told.

But today, the siren meant something different. Today, the siren meant that I had rolled through the stop sign on my little, backwoods, rural, middle-of-nowhere, don’t-nobody-else-stop-neither road, and that said rolling had not gone unnoticed.

Sometimes, a siren going off around here means that the kids, history buffs that they are, have re-enacted the Battle of the Alamo, using bubble wrap to mimic the sound of gunfire. I don’t know about gunfire, but our alarm system thinks bubble wrap sounds an awful lot like breaking glass. And our glass-break detector actually does immediately call the police department.

Of course, because we live in a little, backwoods, rural, middle-of-nowhere kind of place, it takes the police 30 minutes to arrive at our front door to investigate whether we have been chopped up into small, unidentifiable pieces by serial killers. There are never any police cars on patrol where we live (if you happen to be a crazed criminal, you should know that we have two vicious attack dogs and one very aggressive llama, and we are armed with awesome guns, and we are trained in the art of fujitsu. Unless fujitsu is some sort of camera, in which case we are trained in something else that will allow us to separate important parts of your body from one another using only our toes. Who needs police when you can disembowel people with your toes?).

In the entire 6 years I have lived here, I have seen no more 5 police cars. Or maybe I’ve seen one police car, but I’ve seen it 5 different times. In any event, encounters with law enforcement are sufficiently rare as to have instilled a sense of confidence in the denizens of our particular nowheresville: specifically, people don’t stop at stop signs. Some of them don’t even slow down.

Myself, I’m a stopper. Not only that, I have been known to point and wag my finger at the non-stoppers, or at least at the drive-right-through-at-35-mph-ers.  And I can do that in all my well-deserved self-righteousness, because I am a stopper.

Or so I thought….

Yesterday afternoon, any delusions I held regarding my standing as a keeper-of-the-code-as-it-applies-to-stopping-for-a-full-three-second-count-at-all-stop-signs were shattered.

See, when I woke up yesterday, I had every intention of leaving the house to take Mason to go get his bloodwork done first thing in the morning. I don’t know why it takes us 4 hours to get out of the house in the morning. So we left the house on our way to the lab at the crack of 11:20.

At about 11:35, I remembered that the road was under construction. It was the orange-and-white-striped barricades that  jogged my memory. You would think I would have remembered sooner—miles and miles sooner, as in, before-it-was-too-late-to-take-an-alternate-route sooner, especially in light of the fact that these same barricades sucked a sock up my vacuum cleaner on the way to my girls’-night-out viewing of White Christmas on the big screen with one of my besties only a few nights earlier.

Even with the diversion, we arrived at the lab-o-trauma at 11:42, a full 18 minutes before they close for lunch. Which would have been a tremendous victory, had there not been a sign declaring “We’ve Moved!” on the door.

Mason really doesn’t like being strapped into a car seat. And the only thing more injurious to his happy mood than being buckled in is having to be buckled in again after having finally enjoyed a brief taste of freedom.

Four kids back in the car, buckled, one frustrated round of, “What do you mean, you’re not buckled? What have you been doing for the last 3 minutes?”, and we’re on our way to the lab-o-trauma’s new location, which happens to be smack-dab in the middle of the construction zone we’d just detoured around. Which probably explains why I drove right by it, then had to make a rather awkward T-intersection U-turn. It might also explain why we found ourselves driving on the wrong side of the pylons, into the path of an oncoming 18-wheeler. Luckily, Riley notices things like oncoming 18-wheelers that might escape the notice of someone who’s squinting out the window, mumbling “Where is it? It’s gotta be one of these buildings….”

In spite of our little unscheduled adventure, we arrived at 11:54, a full 6 minutes before they close for lunch. I’m not sure what time the other 15 people who were already in the waiting room arrived, but they did not look amused to see our rowdy party-of-five enter.

That place should really hire a second phlebotomist.

Mason doesn’t sit. Did you know that? It’s probably pretty apparent from most of my posts.

So, for the next hour-and-five-minutes, I did my best to keep the 35-pound-ferret corralled on a 2-person bench. I read magazines (Luckily, Better Homes and Gardens has lots of pictures of dogs and cats this month), I played several hundred rounds of “Kiss-me-right-here….you missed! Again?”, and sang Somewhere over the Rainbow, Fly Me To The Moon, and the ABC song…repeatedly. I let Mason practice his hairdressing skills (until he attempted to remove large sections of hair using his thumb and forefinger), and offered my body up as a giant jungle-gym. And I did it with a smile on my face, and while admonishing certain other family members to keep the peace, stop kicking each other, and get their own gum.

Finally, at 1:00, the poor-phlebotomist-who-worked-through-her-entire-lunch-hour called us back to the torture chamber. Now, Mason has an uncanny memory, but maybe the new office threw him. He recognized her as someone he liked, and he immediately turned on the charm. Even as she tied the blue-rubber band around his upper arm, he smiled and flirted. It wasn’t until the needle physically pierced his skin that the look of recognition swept across his face.  But he’s a tough one, and even as she was putting on the bandage and apologizing profusely, he was doing his best to smile at her through his tears.

By the time we stepped across the lab threshold, Mason was fully recovered. Mommy, on the other hand, could think of little other than a session with Dr. Merl Ot. And I still had Wail-Mart, SuperTorture, and KroGrrr on my to-do list.

Every once in a while, a rare glimmer of sanity peeks through the otherwise impenetrable wall of my incompetence. This was such a time. Rather than drag all four children around town to run errands, I drove 20 minutes home and dropped them off to The Hubby, armed with all the sympathy-rousing-patheticatude I could muster, then proceeded to make the 20 minute drive back to town.

It was shortly into my proceeding that I heard the siren.

Now, if you know me, you no doubt know that I can’t do things in any way that could be deemed ordinary. It’s not that I don’t, as if I’m striving for some sort of zenith (or nadir– depends on your perspective I guess…) of eccentricity. It’s that I can’t.

So it may come as no surprise to you to hear that I was pulled over not by a police car, or a sherriff, or even a county constable…but, by a Texas Wildlife Officer.

The answer to your question is, “Yes, evidently they can.”

Since it is already November twenty-somethingth and I have yet to do an “I’m thankful for” post, let me take this opportunity to say that I am thankful that the Texas Wildlife Officer let me go with a verbal warning.

I will close with a dramatic re-enactment of the incident, which may or may not offer a glimpse of why the Officer didn’t detain me to write a ticket:

Me: Hello, Officer.

Texas Wildlife Officer: Ma’am, I stopped you today because you ran that stop sign back there. And you didn’t just run it, you ran it fast. Is there any particular reason you did that, ma’am? Anything going on that would have caused you to not just run that stop sign, but to run it as fast as you did?”

Me: Well, officer, it all started because I had to take my 5-year old to get bloodwork done….

I have no use for political correctness.

Nothing shuts down constructive dialogue faster than the fear of inadvertently saying something that will be deemed “politically incorrect” by the listener. Political correctness is the enemy of meaningful discourse.

Don’t get me wrong—I don’t condone the use of racial epithets or shock-jock language. Not because I care about some notion of political correctness, but because I’d like to think I’m a nice person who cares about the feelings of others.

Johnny Knoxville doesn’t care much for political correctness, either. I know this because he says so in the clip I’m about to share with you (don’t scroll ahead—geez, I promise I’m not going to ramble on this time. Be patient, and we’ll get there when we get there).

See, I’m not a big fan of the word “retarded.” But I realize that most people who don’t have a child with Down syndrome in their life aren’t up on the latest vernacular (which is, by the way, some combination of either of the words “cognitive” or “intellectual”, paired with either of the words “challenge” or “disability”).

If a well-meaning individual strikes up a conversation with me about the fact that their little neighbor was retarded, and she was just the sweetest thing, I’m not going to get offended. If someone asks me what the most challenging thing about raising a retarded child is, I will remain unflapped. I’ll tell you why: because we live in a country where people with Down syndrome have only recently—in the past few decades—been afforded the opportunity to live their lives outside of an institution, and in which over 90% of parents who find out pre-natally that their child will be born with Down syndrome choose to abort. The most dangerous thing we as parents can do is to discourage people from talking about Down syndrome. And the fastest way to discourage them is to make them memorize the verbage that comes to us so easily.

I had to have this conversation with Ethan when Mason was just a baby. The neighbor’s kid said to him, “Your brother’s retarded.” Being only 6 years old, E didn’t possess the verbal skills necessary to engage this child in a meaningful dialogue. What he did possess was a water hose.  But it gave me a great opportunity to engage the kid’s mother in meaningful dialogue, seeing as how when he went home soaking wet, he left out the part about why Ethan sprayed him down.

So if you want to talk to me about Down syndrome, don’t ever worry that you’re going to use the wrong words. I don’t care—it’s way more important to me that the conversation takes place.

However, I feel much differently about the use of the “R” word as a slur.  Let me elucidate….

When you say, “That’s so retarded!”  I hear, “That’s so Mason.”   Likewise, when you say “What a retard,” I hear, “What a Mason.” 

Do you get it?

See, I know that the overwhelming majority of people don’t mean to be hurtful when they use the “R” word. Well, I’m pretty sure they mean to be hurtful to whomever it is they’re talking about, but they don’t intend to slam the entire intellectually disabled community. I get that. I totally do.

But now that you know how it makes me feel for you to basically say “That’s the kind of stupid thing a person with Down syndrome would do,” now that you know that it hurts me—not offends me, but cuts me to my core—for you to equate my son’s genetic condition with stupidity, let me ask you something: do you care?

I promised you some Johnny Knoxville, and I am a woman of my word, so here it is. And by the way, anybody ever calls my son a “retard,” and for the next few days they’re going to be answering the question, “How the hell’d you get a bootprint on your forehead?”

Watch the clip HERE (as in, actually click on these words, because I am not blog-savvy enough to figure out how to actually link the clip with the little thumbnail pic down there. Nothin’ but a glorified typist, that’s what I am…).

Today has been hard….

I’ve decided that I’m just going to type this as it comes out, stream of consciousness style. You’re no doubt saying to yourself, “Gee, isn’t that how all your posts are, Ashley?”  But you have no idea how much editing and revising and crafting goes into one of my ordinary posts just to give it some vaporous semblance of readability.

I don’t have the wherewithall for that today. I’m just going to let it spill out, like warm Shiner on pavement, let it splash and foam and subside until it soaks in and is gone. (If you’re wondering what Shiner is, then you’re obviously not from Texas. Come visit; I’ll enlighten you).

Our social worker comes this weekend for our first homestudy visit. She will inspect my house, interview my family, and decide whether we are, in her opinion, fit and able to bring a couple of Eastern European orphans with Down syndrome into our home. Along with the homestudy is a scavenger-hunt list of items for us to gather up and present to the social worker: certified copies of birth certificates, our marriage license, sworn statements from our doctors that each member of our household might be expected to live to see an adopted child reach maturity (yeah, I thought that was a little morbid, too).

Assuming that we are found competent (snort. sorry…), there is the issue of finances. Our adoptions will cost about $26,000 each.   $52,000.  I get a little woozy every time I say that out loud. Actually, I got a little woozy typing it just now, for that matter. That’s a lot of money to raise.

We have a few fundraising events in the works. I am baking my almost-famous Key Lime Pies like crazy, selling them to sweet friends and family who are eager to be a part of our journey. But with life-and-death in the balance, we have to hustle to raise the money quickly.

Now, The Hubby and I have this automotive fantasy. It involves my first car, which is at this moment parked in my mother’s garage:  Sadie, a 1969 Cougar convertible. Red. 351. Sequential tail-lights. Rrrrrowww….  We’ve always planned to restore it one day. It will be our old-people car, the one that we’ll drive around town with the top down, letting our white hair blow in the breeze. He thinks I’ll let him drive. And I might. Once in a while.

A 1969 Cougar, from mustangandfords.com. Not MY Cougar, because all my pics are stowed away in boxes somewhere....

It’s a wonder I didn’t get myself killed driving that car around as a teenager. Man, she could haul like a scalded dog. I remember the adrenaline rush of pulling up to a stoplight next to some testosterone-infused JohnnyDangerous in a hot-rod of his own, revving the engine, inviting me to race. Nothing like being a 17 year-old girl, smokin’ some dude on Pioneer. Those were the days.

My father bought the car for my mother in 1975, with no consideration of the fact that it wasn’t practical for hauling two children, dry cleaning, and bags of groceries. He put it in her name, and when he left my junior year of high-school and mom needed me to have my own vehicle to get around town…well, Dad implored her not to let me drive it. It was too much car for a reckless teenager, he said. He said I’d end up totalling it, or worse. And mom said something like maybe-you-should-have-thought-of-that-before-you-left-me-on-my-own-to-raise-two-children-as-a-single-mother.

In the years after the divorce, that car became my connection to my father. Our relationship was often rocky. Not I-hate-you-you’re-ruining-my-life rocky, but the kind of rocky that happens when two people are too much alike to get along for extended periods of time. My mom used to say that when my father and I got into it, she could see laser beams extending from between our eyes. I have my father’s amber eyes, and she said that when the two of us were locked in battle, our matching glowers were too much for her, and she had to leave the room.

As I navigated the tricky sea of distance between the home he no longer shared with us and the home where I visited him a couple of times a month, it was the Cougar that gave me a sense of still belonging to him. I remember sitting in his garage as he replaced a CV joint, talking comfortably without the darkness of everything that had changed hanging over our heads.

I always thought I’d keep that car forever….

My father loved cars. Racing was his hobby: a Ford Fairlane when I was a baby (he told my mother it would make a great “family car.” The first thing he did when he got it home was rip out the back seat and install Hooker Headers); sleek, fiberglass-bodied European S-2000 class when I got older. He worked in auto fleet and leasing. A couple of years before he died, he personally went up against Lee Iacoca on a bid for the US Government…and won. 

As a celebration present, he bought himself a beautiful, blue-green Mazda RX-7, which I ran over in my driveway while he and The Hubby were at a NASCAR race. Backed my Nissan Pathfinder right up over the hood, coming to a stop inches from the windshield, taking both pop-up headlights out in the process. He passed away suddenly a month later. The last words I said to him in person before he died were, “I’m sorry I ran over your car, Dad.”

But even though he loved cars, he always said, “A car is just a metal box to get you where you need to go.”

Where I need to go right now is Russia.

A couple of years ago, my big-blue-Suburban refused to start in the parking lot of the Kinko’s where I’d just run copies of my manuscript (have I really been working on this novel for THAT long?).  A big, burly man in a pickup truck came along, gently berated a slightly-built good samaritan for his cheap “toy” jumper cables, and proceded to hook up his own behemoth, industrial cables under my hood. I commented that I felt a little out of sorts underneath this hood, that in my ’69 Cougar, I knew exactly where the best place to ground the negative was.

Turns out he had an old Cougar, too, that he’d restored himself. Furthermore, although we were in a neighboring city at the time, we lived in the same small town, just 5 minutes from eachother, and I had seen his Cougar out in front of his house.

Today, as I was driving around town to obtain two more of the items on my scavenger-hunt list, American Pie came on the radio. My dad and I used to sing along to that song, watching each others lips to see who would stumble on a line first. I was on my way to the bank, just a stone’s throw from the shop the Cougar guy owned. As I drove on, a Ford Fairlane pulled onto the road in front of me. It didn’t have the snazzy red-orange-and-yellow paintjob that Dad’s Thunderbolt sported after he quit pretending it was a family car and devoted it to weekend racing, but it was a Fairlane, a rare sight these days.

I started to cry.

God puts us where we need to be, and He puts people in our paths for a reason. And he hooked me up with a hot-rod mechanic who just happened to have rebuilt a Cougar and who just happened to live in my little small town. God has gone to great lengths so far in our adoption journey to put the cookies on the bottom shelf for me. 

All these years, I haven’t wanted to part with the Cougar because it was my father’s car. But now, I realize that it’s really my Father’s car. It’s only been on loan to me these 25 years. Time to give it back.

I cried while I was talking to The Cougar Guy. He said I can have AAA tow the car to his place sometime in the next couple of weeks, and he’ll give me an idea of how much we need to put into it to make it saleable. Funny thing is, I’m really okay with it. I’m excited about it. It’s bittersweet, but sweet nonetheless.

On the way home, I hit the CD button. Soolaimon. I remember my dad—-the impetus for my love of old Neil Diamond—- singing Soolaimon. Lord of my wants…God of my needs…Leading me on….  I will never listen to Soolaimon the same way again.

I’m glad it wasn’t queued to Crunchy Granola Suite….

If you want to know why it’s so urgent that we rescue these children, click HERE for a video clip of what life inside an Eastern European mental institution is like.

And if you want to know what’s going on in the lives of a couple of other crazy, hip bloggers like me, click HERE.

Mindy and Taya are beautiful, healthy little girls who happen to have Down syndrome. Within the next two weeks, both girls will celebrate their 4th birthdays.

Mason celebrated his 4th birthday last August. We took him to Chuck E. Cheese, which is the surest sign that a parent loves their child. I wouldn’t suffer through three hours with the Big Gray Rat for some kid I just liked okay.

In case you don’t know, Mason can’t tolerate corn in any form or amount. Makes him terribly sick. So I made corn-free cupcakes to celebrate the occasion. Sounds easy enough, right? I mean, when’s the last time you saw a cupcake recipe that called for a cup of corn? But corn is sneaky and subversive. Down right evil. Corn is found in vanilla extract, baking powder, and powdered sugar. It sneaks into the eggs and milk of corn-fed livestock.

Are you wondering how Mason liked his cupcakes?

That is The Daddy using his mad persuasion skills on the Mason-cupcake situation. It is also Mason using his mad resistance skills on The Daddy. Like so much of a mother’s work, all of my effort on the birthday cupcakes went unappreciated. He really dug the candles though, and the whole “hey, everybody’s singing to me!” thing. He enjoyed tearing the wrapping paper off boxes and then throwing the boxes onto the floor. And mostly, he loved running around and being a kid spending his birthday at Chuck E. Cheese.

Birthdays are awesome.

Unless you’re a Russian orphan with Down syndrome.

Mindy won’t have cake or presents when she turns 4. Nobody will sing “Happy Birthday,” she won’t puff out her cheeks trying to blow out her candles until her big brother or sister finally helps her out.  Instead of cards, she’ll get transfer papers. And instead of a trip to the pizza parlor, Mindy will take a one-way trip to a Russian mental intitution, where she will live out the rest of her short life in squalor, surrounded by the rest of the people that her society wants to forget even exist.

The morning after his 4th birthday, Mason woke up to the sound of his big sister beckoning him to come play with his new toys. Shortly after her 4th birthday, Taya will wake up to the shrieks of her desperate fellow inmates, groaning in misery. Mason got hugs and cuddles and wide-eyed comments of “My, you look older today Big Boy!” Taya will spend her entire day in a metal crib, without so much as a smile cast in her direction.

Don’t take my word for it….

Click here to watch the Today Show video of what life is like in one of these institutions. 

As I type this, Mindy has 5 days left. Taya has 11. Mere days until their lives go from pitiful to horrific. I pray that their forever families find them before it’s too late. And I pray that they won’t let finances stand in their way. Nearly all of the adoptive families I’ve met through Reece’s Rainbow had to raise the funds for their adoptions. Very few of us have the extra money sitting around.

Please, if your heart breaks for these precious children, if you cry for them, if you wish you could do something…

…do it.

Find out more about Mindy and the other angels of Reece’s Rainbow at the Reece’s Rainbow website And by all means—if you want more info, LEAVE A COMMENT! I read each and every comment, and I can hook you up!

Most of you know that if there’s one thing I’m adamant about (yeah, I know–I’m adamant about lots of stuff. Keep your arms and legs inside the car at all times, and let’s go on a little ride, shall we?), it’s the fact that the chaos that follows Mason has very little to do with Down syndrome, and a whole lot to do with the fact that he’s just that kind of kid.

But from a practical standpoint, there are a few Down syndrome related issues that do impact our daily life. One of these is the low muscle tone/ligament laxity issue, technically termed “hypotonia.”

Often, prospective adoptive parents will ask questions about various conditions in order to be prepared with specific challenges the child might face. I realized that there are several things a parent needs to be aware of concerning the challenges posed by hypotonia. So I comprised (in no particular order) the following list:

A hypotonic child can put his leg straight up so that his foot is in his big sister’s face while riding in the car seat, and he can just leave it there with no effort on his part.

No matter where you put the box of wipies on the bed while during a diaper change, he can hike his leg up and kick them off the bed.

Carrying the hypotonic child is similar to trying to hold on to a large bag of water with a 30-pound ferret inside.

Regardless of how securely you fasten the buckle in the shopping cart, the child with hypotonia will be able to escape, usually in the check out line as you are explaining to the sacker that you would like the cold items bagged together.  (Incidentally, other shoppers find the sight of a small child riding on the checkout conveyor belt quite amusing….)

A hypotonic child can reach behind his back without any detectible upper-body rotation and grab glass bottles out of the shopping cart and hurl them onto the concrete in the parking lot, making his older brother believe that there has been a drive-by shooting, and that since he doesn’t feel any pain, the target must have been their mother whom he expects to drop to the ground at any moment.

Although no scientific studies have been conducted on the matter, anecdotal evidence would indicate that hypotoina is associated with mad dancing skills.

“Is that the guy that plays Hank in your book?”

We were watching LOST together—my 10 year-old moppy-headed boy and me. It was last season, when the Oceanic 6 returned to the island (I can’t keep seasons straight–5? 4? Heck, I can’t even tell you how old I am without subtracting 2 years from The Hubby’s age. Unless it’s that beautiful season between May 31 and July 11, when I get to be THREE years younger for the 41 most glorious days outside of Christmas).

Anyway, we were watching LOST, and it was a scene with Frank and…well, I’m not going to pretend I remember what scene it was. It’s immaterial anyway. The point of this is that Ethan was talking about Frank, played by Jeff Fahey.

image of Jeff Fahey in LOST, "Confirmed Dead" from Wikia entertainment

Frank’s character was introduced a couple of seasons ago (3? 4?),. Now, if you’ve read the little blurb about my life (marriage, yada yada, Down syndrome, yada yada, llama), you’re no doubt wondering how I find time to watch tv. All I can say is I hope Mr. TiVo made himself a nice fortune, and is enjoying it on some island somewhere with one of those private striped cabana thingies and a valet to bring him fruity drinks whenever he wants.

Without TiVo, I’d never get to watch anything. Even with TiVo, it’s dicey. Is Biggest Loser over already? I’ve been TiVoing the whole season, haven’t watched a single episode. Finally gave up on Heroes, Survivor, The Amazing Race (sniff), pretty much everything except LOST.

To be completely honest (what, you think I’d lie?), I’m using the term “watch” in the loosest of all possible senses. See, me “watching” an episode of LOST goes something like this:

Me, talking to myself(oh, like you don’t), finger hovering over the fast-forward button : “Walking through the jungle…more jungle…talking!” At which point I switch from “fast forward” to “play,” then try to rewind back five seconds to catch the beginning of what they said, which is really frustrating because for some reason you can’t rewind back five seconds with TiVo, so I end up rewinding 15 seconds and watching the 10 seconds of walking through the jungle that I just fast forwarded through (okay, maybe Mr. TiVo doesn’t deserve the private cabana thingy until he fixes that little glitch). And usually I’m changing a diaper at the same time, because that’s the only time I can steal away to my room without being followed. 

So…diaper…jungle…TiVo…oh, yeah—Frank.

So, Frank’s character was introduced at the end of the season, during a moment when it just so happened that Mason had kicked the remote control off of the bed during a diaper change, so there was no fast-forwarding going on. I happened to glance up at the tv to see if the lack of dialogue was due to walking through the jungle (it wasn’t), and said to myself, “Hey, that’s Jeff Fahey.” And then Mason managed to get one foot free and haul it up over his head (there’s that ligament laxity again) and kick the box of wipies across the room, narrowly missing my face.

I had to save the rest of the episode for another day (that’s another thing about me “watching” a show: it takes a good 6 days for me to watch an entire 1-hour program). That night, I had a dream about…well, it’s kind of vague now, but there was this chick, and there was this shady secret agent type guy–who happened to be Jeff Fahey. You know that novel I’m writing (the one that’s THIS CLOSE to being finished, only I haven’t had time to work on it since starting the whole adoption thing? And yes, I realize I haven’t blogged about the adoption thing. Geez, like I need more pressure….)? Well, that’s kind of how it all started, with a 90 second dream.

And to answer Ethan’s question, yes. That’s the guy. And then it hit me that Ethan had never seen The Lawnmower Man. Yeah, I realize I’m kinda random. I’m assuming that fact didn’t totally blindside you. But it wasn’t so random at the time, because the kids had just found this old video that we bought back in the early 90s called “The Mind’s Eye.” It was a compilation of early (waaaay early) computer animation. Back in the day it was cutting edge. And it was about that same time that The Lawnmower Man came out. So see, everything ties together all nice and neat.

“What’s Lawnmower Man?”

So I explained to Ethan that Lawnmower Man was about virtual reality, and that it was one of the first movies to use computer animation. Not to mention the fact that the main character (played by Jeff Fahey) is a man who happens to be intellectually disabled.

Ethan was intrigued at the prospect of seeing what passed for cutting edge back in my day, and having a brother with Down syndrome, he’s always up for the topic of intellectual disability. So I TiVo’d it (on one of the channels that edits out language and ‘nudery’). Once I was able to ignore Ethan’s ridicule (“THIS used to be high-tech?”), I realized that having a child with a cognitive disability gave me a different perspective on the movie this time around.

When I was in 5th grade, I read “Flowers for Algernon.” Amazing book, even as an 10 year-old.

The “Algernon” of the title is a lab mouse who experiences a quantum leap in cognition following a breakthrough surgery. Subsequently, the title character–an intellectually disabled man named Charlie– undergoes this same surgery. Not only does it ”cure” his condition, but he becomes a genius. But Charlie isn’t prepared for his sudden change in IQ, and his story doesn’t end well.

Lawnmower Man follows a similar theme, only it’s a chemical cocktail developed by the military instead of surgery that ‘cures’ main character Jobe, plus it’s got some virtual reality, a chimpanzee instead of a mouse, and an abusive Hugo-esque (Hunchback of Notre Dame ring any bells?) priest who views Jobe’s disability as a curse thrown into the mix.

As the mother of an intellectually disabled child, I appreciated Fahey’s sensitive portrayal of a young man who takes great pride in his work, who loves his friends dearly, and who is painfully aware of the taunting of the town bully. His story ends better than Charlie’s, but only because you can pretty much break all the rules when you’re talking about virtual reality. And only if by “better,” you mean he gets to pretty much kill everyone who ever hurt him.

Both works show man’s desire to tinker with God’s creation, to “cure” what we see as imperfection. Charlie was perfectly happy as a janitor. Jobe was happy mowing lawns. Neither of their “cures” made them better people.

I read today that researchers think they have a “cure” for the cognitive delays associated with Down syndrome. The treatment has evidently shown promise in mice, and they’re hoping it will yield similar results in human subjects someday. Think of it: a “cure” for cognitive disability. A breakthrough treatment, and my Mason could be just as smart as any other kid on the block. Normal. Ordinary. And in the process, just maybe it would “cure” him of his unquenchable joy, his resilience, his steadfast persistence. Maybe when things didn’t go his way, instead of cocking his head to the side and flashing his trademark smile maybe he’d stomp his feet and pout and give up.

At what cost, this “cure?” How do you extricate the “self” from cognition? How do you pull one thread from the rug without compromising the pattern? And what if you can’t? What part of the “self” do you kill in this quest for perfection?

I won’t vilify the parents who jump at the chance to increase their children’s IQs. I hope it works out better for their children than for Charlie and Jobe, I really do.

But I think I’ll pass. Last thing I need is an angry kid with a lawnmower….

“Oh, I’m so sorry….”

No, that’s not what people say to The Hubby when they find out he’s married to me. It’s the response that often follows the sentence, “My child has Down syndrome.”

I’m not here to chastise anyone. I mean, before I had my own little Flexible Flyer, I might have said that a time or two. After all, society tells us that it’s such a tragedy.

And it was, for a time, back when I lived out a lifetime of fears inside my imagination. But it quickly became apparent that I’d been sold the proverbial bill o’ goods, that the people who told me how terrible Down syndrome was had no idea what they were talking about.

I realize it’s still hard for a non-Downs parent to conceptualize. Having 3 non-Downs children myself, in addition to the velcro monkey, I feel qualified to put things in perspective for you. So here, in no particular order (why do I always feel the need to say that? As if you people would honesty expect anything resembling “order” to spring from a blog titled “Chaos Diaries.”), I give you 10 things that are more tragic than Down syndrome.

1. Having a run in your pantyhose

2. The thought that gas prices might rise above $3 again.

3. The fact that I didn’t get my Christmas tree down until after Mothers’ Day, and it’s almost time to put it up again.

4. Baking a hot, fresh loaf of bread–and then finding you’re out of butter.

5. Opening the jewel case of your favorite CD to find that last time you played it, you took whatever was in the CD player at the time out and stashed it in this case—and now you have no idea where your favorite CD is.

6. Having to vent your dryer out into the laundry room because the plumbers who ran the ductwork thought running the duct up through two stories and an attic out onto the roof would make infinitely more sense than running it 6 inches through the exterior wall, so now it’s always clogged and your dryer takes 3 hours to dry (and even then it doesn’t dry, it just slighty-less-wettens), and poses a fire hazard, so now every time you want to dry a load of clothes you have to open the window (which happens to be over the cat litter box) and prop the box fan in it to suck the hot, humid air out, because as posh as the idea of having an in-home sauna sounds, “black mold eradication” isn’t quite as sexy.

7. Peanut allergy. Especially when your 5 year old rushes into your arms crying after school, because one of her friends grabbed her hand on the way out of the classroom and of course, they ate PB&J for lunch and now she’s afraid she’s going to die any minute.

8. Traveling with 4 children.

9. Going to SuperTorture with 4 children

10. Being 14 years old and spending an hour flat-ironing your hair, only to walk outside in the humidity and have it frizz (which, according to my 14 year old, would also make it onto a list titled: “Things that are more tragic than the end of life as we know it on this planet).

I could go on forever. Seriously–you know I could. And what’s more–I bet you can come up with a few of your own. Leave me a comment, and let me know what things in YOUR life are way more tragic than the fact that you have a child with Down syndrome.

I still remember how scared I was when I found out Mason had Down syndrome.

It wasn’t the intellectual disability that haunted me; I wasn’t bothered by the fact that he might not excel at mathematics and foreign language. It wasn’t that he would look different or talk different. It wasn’t even that I worried about other kids being mean to him. They’d have 3 older siblings to contend with, after all.

No, my overwhelming worry was that Mason would be passive spectator and not a participant in the grand adventure of life, watching from a distance, not tuned in to the world around him.

I am happy–and somewhat exhausted–to report that my fears were completely unfounded.

As I write this, I have just gotten back from a walk with Mason. To be more accurate, from a walk-jump-run-fall-monster stomp-sit in the dirt-offer fingers to the neighbors’ dog for a good licking-fire hydrant discovery-gravel inspection-sit in the middle of the road-run the opposite direction when Mom says come here with Mason.

Incidentally, if there are parts of this post that seem inconsistent or that just don’t make complete sense, it is no doubt because Mason has just swiped my notebook and used my freshly penned page to mop up the excess wet pasta slime from his high chair tray. Lovely.

Back to today’s expedition. It started out as a little time on the porch swing after Mason got off the school bus. It would have been a relaxing proposition, except for the fact that he insisted that I sing an original little ditty I composed in his honor called “Swing, swing.” It goes like this: Up and down, high and low, that’s the way we like to go. (repeat) Swing, swing, a marvelous thing, oh how we love to swing. (repeat). I am not a student of music, but whatever that term is at the end of a stanza that indicates “repeat without end,” Mason thinks this song has one of those, because the minute I finish he yells “Again!”

After the 23rd refrain, I took a deep breath and closed my eyes to fortify myself for yet one more round. When I opened them, I caught a fleeting glimpse of Mason’s backside as he headed around the corner of the porch toward the driveway. Now, I should mention that most of the Mo’s have been sick this week, which means Mommy hasn’t had much sleep. Suddenly another refrain of “Swing, swing” didn’t sound so bad.

The caliche was already crunching under Mason’s hiking boots, so I had no choice but to pursue him. I tried to encourage him to stick to the paved road, but he immediately veered off into the high-grown grass along the neighbors fence, like he always does. We’re out in the country, so this isn’t a manicured parkway–it’s dirt and rock and stickers and ants. And stickers. Not those little burrs that are nothing more than organic velcro–no, these are evil, thorned, spawn-of-hell deviant stickers, the kind that have hooks and barbs when you look at them under a microscope (okay, the fact that they HAVE hooks and barbs isn’t dependent upon whether you’re looking at them under a microscope. But I’m tired. I haven’t slept. And reworking that sentence felt like it was going to take a lot more energy than I have at the moment, so we’re going to run with it and keep going).

First stop, the neighbors’ fence to greet Harley, their black lab. We have a perfectly good black lab of our own, who happened to be on our front porch–the front porch Mason recently abandoned in favor of coming to see THIS black lab. My older kids insist that this is a demon dog. I’ve always believed them, because he barks like a demon dog every time I walk down the road. So I rushed to the fence, hoping to beat Harley. He got to Mason first…and proceeded to lick every one of his pudgy little fingers through the mesh, tail wagging, ears flopping. Mason giggled the whole time.

We ambled right down the road onto the adjacent cul-de-sac (our neighborhood is shaped like the number “4.” Well, not the “4″ I just typed, but more the way you actually write it, where it’s open at the top. Anyway…), Mason told Harley goodbye, and we walked uneventfully to the leftmost edge of the ’4,’ then turned around to head home. I was elated at this point, because Mason’s idea of a walk is uni-directional, as in walking “away.” He is not into the return trip at all, and lets me know by thrashing and screaming. But this time he was actually okay with the about-face, which I took as a good sign. Because I’m an idiot like that.

About 15 feet into our back-the-way-we-came, Mason noticed the gravel at the edge of a driveway. Like the black lab, gravel also falls into the things-we-have-our-own-of category. But this was someone else’s gravel, exotic gravel. I tried to channel my “we’re-exploring-and-experiencing” mood as he sat down on the road–I really did–but it was hard. The sun had started peeking out through the clouds, playing mean games on my face with the humidity. I wiped off the sweat and bent to pick him up. Only Mason wasn’t exactly in a being-carried kinda mood. He informed me of this fact by stomping, screaming, and pinwheeling himself across the road.

Just before he threw himself to the ground, he noticed the out-of-service fire hydrant. You know boys and fire hydrants. No, he didn’t pee on it. That’s dogs and fire hydrants. But he did set to inspecting it. In detail. As if when he arrived home he would be called upon to create an exact clay model of it. Meanwhile that humidity is dripping out from under my hat and down my cheeks, and I’m wishing I could convince him to just let me carry him home.

“C’mon buddy, let’s go.”
“Nnnnnnnnnnnno.”
“Can I hold you?”
“No.”
“Look–it’s Harley! You want to go see Harley?”
“No. Nonononono. No.”
“You want some milk?”
“No.”
“Applesauce?”
“No. Nonononono. No.”
“Wanna go watch a show?”
“No.”
“If you don’t stand up, I’m going to carry you.”
“NO! NO! NNNNOOOO!”
“Well, I’m going home. Bye.”
“Bye.”
“I’m serious. I’m really going. See? I’m walking down the road. This is me, going home. See? I’m going.”
“Go.”
My bluff had been called. Dang, this kid’s good. I walked back, my mommy-tail between my legs.

Any mom who’s been on the job for very long knows there’s only one thing to do in this situation: cart the kid’s kicking-and-screaming booty home forcefully. Remember the whole ligament-laxity thing I told you about? (Clean up on aisle 6) Well, another implication of this condition is that a child with Down syndrome who does not want to be held is NOT going to be held. This kid can twist and torque and flip and writhe like that little weasel-ball they sell at the Cracker Barrel gift shop.

I tried anyway. And within seconds I was reminded that Mason had walked the whole way through the sticker patch. With each swipe of his feet, my forearms bore the brunt of those evil spikes.

Then, I saw it–my small, round, flourescent-yellow dimpled hope. Golf ball! See, Harley’s owner chips golf balls all the time. And this little stray baby was my ticket home.

“Look Mason! You wanna play catch?” Yeah, technically I intended to play fetch, but he didn’t need to know that. I tossed the ball down the road. After retrieving it, Mason sat down in the middle of the road and waited for me to do the same.

This would be so much easier if he would just let me carry him.

So I finally got him to stand up and showed him how this game was going to work. I threw the ball, he ran after the ball, I ran a further down the road so he could throw it to me, and all the way we’re making forward progress. Until the little yippy dogs came down a driveway toward us. It is a proven fact that 4 year olds cannot resist little yippy dogs.

Now, at the edge of the yippy dogs’ driveway was a toddler-sized pothole filled with muddy water from the storm the night before. If this were some predictable B-comedy, I’da said something like “Don’t step in that–” and then Mason would have tripped, falling right into the pothole, covering himself head-to-toe in mud.

Ummmm…..yeah….

He pulled himself out of the muck, wiped his muddy face with his muddier hand, stomped over to me with his mud-encrusted-sticker-covered boots, thrust his arms into the air and said:

“Mommy, HOLD ME!”