Category Archives: kiddo life

life in a rigo-cheneau scoliosis brace, or, as we call it, #bracelife

Sophie has been in her Rigo Cheneau scoliosis brace now for nearly nine months (see this post for some of that story).  So, she’s an expert, if anyone is, on living with these strange, medical devices, the good, the bad, and the ugly.  We’ve had so many conversations about it, problem solving strategy sessions, venting, jokes—I mean, really, you have to joke about something as ridiculous as wearing a plastic box.  Over time we realized we had developed a list of #bracelife thoughts and…well, it’s time to share them with the world.  This is a co-post, created by the two of us, for anyone else who is going through this, or is about to go through it.  Kudos to Sophie who’s sense of humor, and voice, is at this post’s beating heart.

#bracelife

1- Life in a box.  There is a certain distance from life that comes with wearing a brace.  You can’t feel things, you’re wearing armor, hugs don’t work anymore.  You don’t know exactly where your body is in space because of the parts of the brace that stick out.  Walking through doors you might catch on a door handle and get jerked back, causing disorientation. You get the sense that if you were in a car accident and slammed forward suddenly, your legs might be guillotined off at the brace’s lower edge. I’m sorry, no more legs for you.  On the up side, if your brother punches you, he hurts his hand.  That never gets old.
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2- Sleeping in the brace.
tossing & turning aranzi aranzo

From the wonderful Aranzi Machine Gun.

Staying still is better.  Don’t try to move around too much, you’ll hurt yourself. Forget about rolling up into a ball.  Flat on your back is best.  Also, moving to sit up takes a crane, so go slow.  The good part: once you’re asleep, the brace can’t bother you (until morning), so crank up the tightness and get the most therapeutic punch for your buck for those sleeping hours.

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3- Clothing.  Look, this is doable. The brace is a bit like a misshapen corset. Yes, there will be some strangeness to your shape, but most people don’t know what they are looking at and won’t notice a thing.  Layers, hoods that fall across your back, little details, especially around your face, shoes that draw attention to themselves.  These things help.  Some examples:
brace fashion 1 brace fashion 2 brace fashion 3 brace fashion 4 brace fashion 5 brace fashion 6
You can barely tell, right?  (PS Maya says: I knitted that bunny sweater, isn’t it AMAZING? I’m so proud.)  Necklaces, hoods, crazy cowboy boots with flowers on them.  Few will notice that one shoulder is higher in the brace, or that ridge along the back at its top edge, or the lumpy shape on one side.  Confidence is everything in fashion.  Pay no attention to the man behind the curtain.
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Some stuff to watch out for: getting stuck to yourself via the brace’s velcro straps.  Avoid loose sleeves that want to stick, or you’ll rip. Put your shoes on first because you can’t bend over once the brace is on.  And your arms probably lose range of motion when you’re in the brace, so jackets are hard to get on.  Go slow so you don’t hurt your shoulder blades, but, hey, it’s inevitable. Buttons or studs on your pants get pressed in and leave a painful mark that lasts for hours. So tucking your shirt in between pants and skin can help with that. The $2 tank tops at Walmart are better, imo, than the $30 ones that are made for braces, unless you want the armpit flap thingie, but I hate the flap thingie, so $2 tanks for me. Plus they come in a bunch of colors.  You will get a stretched out section in the same place on all your clothes wherever your brace sticks out, maybe the ridge along the back.  Sigh and bear it.  You’ll grow out of these clothes anyway (probably), just buy new ones. Thrift stores are your friends—they make clothes so cheap as to be nearly disposable. Bottom line: wearing give-up-on-life sweatpants every day is, well, giving up. You don’t have to give up.  There are plenty of ways to look good and also wear a brace.
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4- Let’s talk about boobs. When I said the brace is like a corset, I mean the most push-up, +3 cup sizes sort of corset there is.  Say hello to your new cleavage. Like those “sexy pirate” costumes that lift everything up for display over a cinched waist.  You can make this work for you.  Or, alternately, you may be mashed inside the brace, ugh. Personally, I think lifted is better than mashed, but either way, you’re getting squished. Which hurts.  And probably not symmetrically, because nothing about scoliosis is symmetrical.  So now you’ve got a mismatched pair, maybe bulge over the top, or out the side, or both, but definitely one bulge is bigger than the other.  Bra cups will bulge too, especially the foam ones—creating an odd look.  But hey, an extra layer of foam between your boobs and the top ridge of that brace is priceless, so don’t skimp on the bras.  Get the memory foam ones.  Worth the money.  Or, even better, get a pair of those silicone go-up-a-cup size “breast enhancers.” I’m not kidding!  It’s not because you want more, um, glory.  Rather, it’s because these squishy silicone wedges/crescents/circles (you pick!) either lift your girls right out of the slicing brace-edge, pillowing them on cushy silicone and taking the hit of that hard plastic edge, or, they sort of cover everything with a pad of silicone, giving you a firm, but squishy layer between you and the brace-edge that is a MIRACLE of Not Hurting. Seriously, these things have been a boob saver for me.  I cannot overstate the relief these offer—I wish I’d figured this out sooner.
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Of course, breasts don’t always stay the same size throughout the month, so you’re probably going to get a different level of mashing and push-up over time that you’ll need to work with. Don’t settle into anything, it’s going to change anyway, is what I’m saying.  Work with the boobs you have that day.  And be careful when bending over—with all this push-up action bending over means you’ve just completely shown everyone in the room…everything.  Oh.  Oops.  Embarrassing.  But you can’t be embarrassed by these things because they’re just going to happen, over and over.  Roll with it.  You’ll feel much better if you think it’s funny.  Oh, and when you eat, crumbs get all down in there (because your chest is like a table under your chin now) and then you can’t get the itchy crumbs out again because you can’t get your hand down your front without taking the whole brace off or looking like a complete dingus … watch them crumbs.
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5- Taking the brace off is like being those biscuits in a tube. You pop the paper and BOOM you explode out.  Sometimes there might be a little headrush or even a moment of nausea, but then comes a feeling of lightness, of walking on clouds, of nothing can go wrong!   Maybe it’s the sudden ability to breath deeply and the flood of resulting oxygen.  Because just like those corset-wearers of old, taking a deep breath in the brace is iffy at best, which makes being out of the brace like the dark skies parting.  You can breathe and move and be free!  Like chewing mint gum, but better.  It’s a truism that we appreciate more that which we don’t have for a while.
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6- Food.  A weird thing about the brace: it constricts the stomach which also seems to put off hunger.  Until you take it off, then OH MY GOD I’M STARVING.  Also, you can feel food going down.  Which is…different?
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7-  Lol bathrooms. Nope.  Bathrooms are hard, because you either have to take the brace all the way off—which is tricky with some pants—or you don’t go.  You become a master at holding your pee, probably much longer than is good for you, but oh well.  Unless you wear Hulk’s purple stretchy pants, you have to peel down enough to get the brace off to get your pants down.  At home it’s not a much of an issue—just wear the purple pants—but public bathrooms are harder, though most of them have a good hook you can hang the brace from.  I mean, I don’t want to set the thing on the floor and then put it back on…ew, gross. In the end, not going is usually so much easier.
(Note: that top picture is my brace hanging on the back of a bathroom stall at the Whole Foods. This crazy god-light caught it, like it should have freaking theme-music.  We can not stop cracking up about that photo.)
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8-  Not going to lie.  The brace is wearable, but it is not comfortable.  Luke, who makes my braces, is great with making changes, but it’s inevitable.  Pushing bones around is a big deal. Squeezed soft tissue, pinched skin, aching, head-rushes. If you sit in a certain position for a while, parts go numb wherever you were unconsciously leaning on edges of the brace.  You get used to it.  Even depending on it for a sense of normal.  There is a strange protective quality that can come from wearing a shell, like being a turtle. But that doesn’t mean it’s comfortable. Of course, high heels aren’t comfortable either, and lots of people wear those, for much less important reasons. Turtles are also slow and can hardly move their arms and legs, which fits, actually.  Turtles might be the mascot of brace-wearing peoples everywhere.
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9- Temperature.  Along with general discomfort, I have to mention heat.  The brace is hot.  This is fine in the winter, but summers are…less than fine.  You’re always hot.  It’s miserable.  Swimming often can save your sanity. Also, keeping a cooler in the car with ice packs in it to store the brace in when you leave the brace in the car for a couple of hours for something that you do outside the brace—that can help a lot.  You get back to the boiling hot car, but yay, the brace is cool!  Or at least it’s not a roasting piece of plastic you’re strapping onto your body.
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10- Daily life.  Yes, it may be true that putting on the brace while lying down and cinching up with attention to detail is the recommend way, but let’s be honest.  The reality is that you’re going to be putting it on and taking it off in the weirdest places.  In the car.  In parking lots.  In public restroom stalls.  Think of triathlons, where the athletes go from the swim to the bike portions, or the bike to the run, and they must switch all their gear including being stripped out of wetsuits and doing flying leaps onto their bikes where their cycling shoes are already snapped into the cleats, and they must do it in seconds.  Life in the brace can be like that.  You wear the brace during the movie, but you’ve got three minutes to pee before the movie starts, so you peel and unvelcro and shove yourself in and out as quickly as you can, adjusting your clothes as you’re coming out of the stall. Fast. It becomes a way of life.  Little kids who catch you in the act will stare, weirded out.  That’s really fun.  You just have to ignore the way people look at it if you’re carrying it somewhere. Just pretend you’re holding a suitcase.  If you’re wearing it and it isn’t completely covered up by your clothes (maybe you got hot and just couldn’t bear the hoodie you started out your day with so you unzip it), don’t try to hide it.  That just draws more attention to it.  Yes, it’s awkward when people notice it, so tell people you broke your back parasailing, or climbing mountains, and you’re still healing. Meet people’s eyes like they’re the weird ones for staring.  What doesn’t kill you makes you stronger, right?
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I remember walking out of the clinic wearing the first brace and, up to then, I’d just been rolling with this whole thing.  But here I was, wearing this brace, and I remember realizing, wow.  This is life now.  This hurts.  This sucks.  Oh shit.  But…oh well?  I’ll get through it?  That was a hard moment.  It comes in waves.  Sometimes it’s fine.  Other times, I hate it.  That’s daily life in a brace.
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But here’s the thing: all in or not in at all.  I try to remember that this is temporary.  I’m getting out of this box.  Some people lose their legs and are going to be in that wheelchair or on those prosthetics permanently.  The brace, however, will pass. Lots of TV and novels and movies in cold air-conditioning help. The main thing about the brace is that it’s not surgery which would have its own horrible side effects and issues. And a brace is not cancer or some other horrible disease.  I’m not dying; I’m not even sick, really.  This is going to be over. Until then, I’m on this path, I’ve gotten this brace to deal with my whacky, confused spine.  There is no point in wearing it some, suffering for that time, but not wearing it enough for it to work.  Go all in.  All in or not in at all.  I’m doing this, so there is no point in thinking about it too much if that thinking upsets me, just work through each day and…have as much fun in life as you can, right?  Don’t let living in a plastic box define you.
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A few surprising good things about the brace:  You can lean against it and if you can find a good place, it holds you up.  Hanging yourself on a hook to watch tv can be amusing. You can make aggressive body percussion music.  You can stick things in it, like your phone.  Finally, it can be fun to hate the brace and be annoyed by it.  Negativity, and the sympathy you can get by playing up your situation does have its upside.  (“Mother, get me the OJ.  Can’t move, I’m in brace…”)  Although, there’s no point in wallowing.  Freak out, then move on.
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Bottom line: #bracelife is helping you.  It has a purpose.  Stay on target.

 

practice matters: three years of drawing progress

Some say 10,000 hours of practice will give you a shot at mastery, and, well, Sophie has been putting in her hours.  But she and I didn’t  realize how much she has leveled up, and how quickly, until we ran across a couple of older drawing of the same subject and put them side by side.

Quick backstory: Terraria is a game she and her brother have played together since it came out in late 2013.  At the time, Sophie was nine and Luc seven and they got really into their characters, Frederick (Sophie) and Terraria (Luc, and, no, I don’t know why his character was named after the game). Here are these characters, as they exist on the screen.

terraria and freddy 1

That’s Freddy on the left with his spiked armor and Terraria on the right wearing a crown.  As part of the fun, Sophie-back-then drew a portrait of the two of them, just like they are here, only, “like they are in my head.”

freddy & terraria 2013

She was nine.  I remember her being pretty stoked at her first attempt at armor.

A year and a half later, then eleven years old, she ran across this drawing in her stuff and thought, I can do better now.  So she decided to redraw.

first terraria pic re draw 450

Already so much change!  She did this one with pencil and paper, scanned it in, and colored it on Photoshop.  You can definitely see the influence of manga comics, which she was reading a lot then, and indeed, she did several comics with these characters. I like how she added the life-stats bar over each head.

Which brings us to the present, it’s a year and a half again later, she’s twelve.  She stumbled across both drawings and once again thought, I can do better now.  She doesn’t play Terraria as much anymore, but still, a redraw of this now iconic portrait seemed in order.  Updated with her current skills and this time painted fully on Photoshop, of course….

terraria re draw 3 500

Not too shabby.  That’s a heck of a lot of improvement in three years.  Sophie works on her digital painting several hours a day most days.  Which makes me ask myself, what am I spending several hours a day getting better at?  What do I wish I was spending several hours a day getting better at?  Not watching tv or doing dishes, that’s for damn sure.  I wish it were as easy to see progress in novel writing, but it’s not so obvious.  I’d like to think I’m getting better.  I hope I’m getting better.  Sometimes I’m pretty sure I’m just spinning my gears, getting more bitter and less brave.  It’s easier to create art when you are young and haven’t gotten kicked around so much, isn’t it?  Or maybe that’s bullshit.  Maybe it always seems easier for someone else.

I asked Sophie if she wanted to say anything about the drawings and she said, “Any artist starting out has to get that no matter how crappy you think you are now, as long as you’re practicing, you’re getting better.  You can’t see it happening, but when you look back and compare, the results are night and day.”  She’s so wise. I love how she doesn’t hesitate to think of herself as an artist, and why wouldn’t she?  She’s doing the work.

freddy close up

you can be too flexible: treating scoliosis with a rigo-cheneau brace, schroth, and postural restoration

Last fall, my daughter was bestowed a diagnosis of scoliosis.

I’m not talking about a little bit, the kind where you ignore it and go on with your life, only a bit more crooked.  I’m talking about the kind where the doctors look you in the eye and say your kid needs spinal surgery.

I was gobsmacked.  There had been no sign, she didn’t look crooked, no way, how could this be?  I went into hyper-research mode (beware a mother with an internet connection) and read studies, forum discussions, doctor reviews, journals from international organizations, even made myself rather sick looking at x-rays of severely distorted spines.  Basically, if you have a curve with a Cobb angle of less than 20 degrees most American medicals will say “wait and see.”  Over 20 degrees, they say, “let’s look at bracing” to keep the curve(s) from progressing until the kid’s growth period is over (and then, maybe that’s it, or maybe it’s surgery anyway).  But if you’ve got a Cobb angle over 50 degrees go straight to surgery, do not pass go.  Doctoring by numbers.

Sophie’s thoracic curve was 55.

The reason we hadn’t seen it before was that she has an S shaped curve with the bottom curve being about the same size as the top, creating a symmetry that means she looks straight.  If she bends over, you see a bit of a swell on the upper right and the lower left, but it’s pretty minor.  She looks like a gorgeous, athletic kid.  Until you look at the x-ray.

sophie 9:16 225

This is from September.  I fell out of my chair when I saw it.

Long time readers will remember all those pictures of young Sophie popping into advanced yoga poses (to my great jealousy) kapotasana on a whim, dropbacks like eating candy, my super-bendy girl.  Turns out there is a very high correlation between super-bendy girls and scoliosis.  Not CAUSE, correlation.  Gymnasts, ballet dancers, etc, are statistically more likely to get it.  Whatever makes them so able to do the extreme moves that make them great at their sports/activities, that thing also carries a risk of bones and/or connective tissue that aren’t holding up under gravity.  Turns out, being bendy isn’t always a plus.

Right away, given Sophie’s remaining growth (an educated guess about it, anyway), there was the suggestion from the docs of getting her into a very new, high-tech surgery involving tethering the vertebra with a wire (like getting braces on your teeth except it’s your spine being wired up) where the tethering would cause her spine to literally grow the curves straight.  It’s so new, however, that long term outcomes are unknown.  Avoiding surgery, if at all possible, seemed like the way to go to me because side-effects and complications are real and come with that roll of the dice all too frequently.  More importantly, Sophie didn’t want it.

However, because that kind of surgery is growth dependent—unlike the much more invasive, tried-and-true surgery where they install titanium rods along the spine—there was a limited window of opportunity.  The surgeons gave us six months tops, to decide.  Pressure.

But we decided to take the risk, and with that uncertainty and time pressure hanging over us, we put together a team of an orthopedic surgeon who is a specialist in scoliosis, an orthotist (for a brace), and a highly specialized physical therapist.  The brace we went with was the Rigo-Cheneau brace, custom made by Luke Stikeleather (one of the only people making them in this country), and a combination of Schroth and Postural Restoration physical therapy.

Did I mention that all these appointments were out of state??  Except the PT, thank god she is just one city over.  What an exhausting fall we had.

Anyway.  Cheneau braces are custom designed to work with a specific person’s spine and curves.  Luke built Sophie her brace with a rather fascinating process of 3-D printing her body, making the therapeutic adjustments to the cast shape, then draping hot thermoplastic over the cast.

brace 1

Luke on the left, helping to lift the 400 degree sheet of plastic up to drape it over the cast of Sophie’s body.brace 2

Here they are closing up the front and turning on the vacuum suction that draws the plastic into the body shape:brace 3

They have to do this part very fast before the stuff cools down.brace 4

Then they cut it off the cast, cut off all the extra, and attach straps.brace 5

Finally a long fitting process begins where he cuts and trims and files and reheats parts with a blow torch to relieve pressure points.  Internal straps and pads are added to increase the correction on the areas that need more pressure (the convex places in the spinal curves), with spaces left in the concavities that breathing can fill.  Then the kid goes back to the hotel to sleep in the thing for a night to find revealed problems, sore spots, areas that rub, etc, and more fitting the next day.  Luke really, really wants to get it right.  He is fantastic, generous, kind, and extremely dedicated.

The result is a bit like a steampunk corset, or maybe body armor, although it is asymmetrical, high under one arm and lower on one hip.  Here is Sophie’s brace:

sophie's brace 2:11:16 450

And here is Sophie’s spine in the brace.

sophie in brace 11:16

Better.  Still very crooked, but better.

We ended up also having Luke make her a sleep brace, because lying down is a totally different gravity picture from upright, and more specific and aggressive correction could be done in either position, if he wasn’t trying to cover all the bases with one brace. Her curves were advanced enough that it seemed prudent to go for as much whammy as we could get out of “bracing” as a therapeutic choice.  So a long, agressive brace for lying down and a cut-down, shortened brace for sitting (where too much length would keep her from being able to comfortably bend her legs, or lower her arms) for day.

Success with bracing depends on wearing the thing as much as possible, and studies indicate the best success when it is worn over 21 hours a day.  That’s a lot.  “I live in a plastic box,” Sophie says.

To balance all that non-movement, and to come at the problem from a different direction, we added physical therapy.  Schroth PT offers a lot of lengthening, stretching out the curves, and breathing into the compressed areas. Relief. Postural Restoration offers exercises chosen for Sophie’s specific curve patterns to strengthen the muscles (again, asymmetrically) so they can support the spine in a better position.  The stronger the muscles get, the easier it becomes to hold a good position during daily life—that is, the muscles start to do internally what the brace does externally.  Hard work, but doable.  Combined, Sophie does about 30 minutes of exercises a day.

Scoliosis is such a weird thing to deal with because it looms so large (especially the extreme cases) as this potentially terrible thing, deformity, compression of organs, pain etc…but my kid was right in front of me with no symptoms, a gorgeous, strong body, no illness.  So all the worry—and I had tons, keeping me awake at night—is for something that hasn’t happened yet.  And that worry takes up your personal bandwidth, you know?  I couldn’t write, I quit yoga for a while, quit blogging (y’all might have noticed), quit everything but dealing with this for a while.

I mean, if your kid gets, say, cancer (and I am so grateful that the Medical Problem Card we drew was not cancer!!), your kid is legit sick right now, it’s terrifying, it’s a crisis right now.  Scoliosis, on the other hand (at the level we are dealing with), is a borrowed problem from the future.  It’s a scramble to play the probabilities in treatment paths that may or may not lead to a good result with the fewest side-effects.  It’s seeing a storm on the horizon, not knowing how bad its going to be when it gets to you, and trying to decide whether keeping an eye on it, getting in the cellar, or driving away is the best choice with the least disruption.  You get informed, you make your choice, but no guarantees.  But whatever choice might lead to a bad outcome.

But hey, Sophie is not currently sick, and that’s GREAT, that’s my kid not suffering, not ill, hallelujah, and I hold onto this gratitude with both hands.  She’s fine, she’s safe, seriously, right now she is fine—thoughts like this would help me sleep, especially in those first few weeks when I didn’t know what to do, and was researching till it felt like my eyes were bleeding.  Being a parent is having your heart walk around outside your own body, isn’t it?

Back to the story.  As all this was happening, I was very open with Sophie about everything I was learning and about what doctors said about her situation, without being alarmist or freaking her out any more than I could.  I told her what I learned, what I thought, and gave her room to make her own conclusions. After all, this is her body, her life we’re talking about.  I wasn’t about to make a decision about it without her being fully, 100% on-board, that is, without it being her decision, too.

As a result, when we decided no surgery (for now), she was committed to the brace/PT path because it was How She Would Avoid Getting Cut Open.  Her doctor was, as he put it, “all in” with a trial period of The Plan, and frequent reevaluations.  Every day (pretty much) she did her exercises.  Every day she wore her brace, tracking how many hours out of it for different activities (aikido, running, bathing, fun, etc).  About her exercises, she might say, “I don’t want to, you have to make me do it.” And I would say, “do you want me to be a drill sergeant? Or maybe offer you chocolate rewards? Or use logic?”  And she would frown and say, “Chocolate.”  Or, “You pick.”  Or, “I hate everything.  Poop.”  Other days she went off on her own.  “You need to do your exercises.”  “I already did them.”  “Most excellent.  Have a cookie.” But my basic message on her hardest days is always, “If you think it’s worth doing, you have to do it for it to work.  If you don’t think it’s worth doing, then we need to figure out another treatment plan.”  Just the simple fact of the situation and that I will listen to her if she doesn’t think it’s working.  (“I know, I know, I’m going….” she says.)

But those days have been rare.  She is on it.  And anyway, occasionally, fuck it, she gets a day off.  Because she works really hard at this, and she’s a kid.

It’s been a little weird how constantly the medical people we have encountered have talked about how hard it is to “get kids to comply.”  Comply, comply, such a yucky word, who wants to comply?  It’s like giving up your will, it’s submission, I can’t believe they use that word.  But when an x-ray tech, or a doctor, mentions how unusual it is to have a kid “comply” Sophie and I just look at each other in confusion.  In Sophie’s mind, the best medical care we can find says that this is what she needs to do to get well.  It’s in her highest interest to do it.  So why wouldn’t she?  Compliance has been a non-issue with her.

At Luke’s brace clinic, a gal comes in and does a kind of counseling/information/orientation session where she talks about how much to wear it, how to clean it, yada yada, with an obvious slant towards convincing the kid not to take it off, not to “cheat.”

“Why would I do that?” said Sophie.  “I want it to work.”

“Well, for example, some girls are worried about how it looks and what their friends will think.  Are you worried about that?”

“No.  My friends aren’t jerks.”

End of counseling session.

Back at home, gradually, we fell into a routine.  Stress lowered to a bubbling simmer.  We had the incredible luck of finding a Schroth/Postural Restoration specialist, Susan Henning, who has been fabulous.  At first I had her teach me as much as she was teaching Sophie, because then I could be the Susan-in-absentia as best I could between appointments.  Later, Sophie got it down and didn’t need me as much.

She has gotten so strong, it’s crazy.

Of course, always the fear that we made the wrong choice.  That this whole plan wouldn’t work, that the PT, the brace, none of it would be enough.

And the expenses.  Jesus Christ, don’t get me started.  ZERO of this very expensive medical care was paid for by our crappy insurance.  Zero.  High deductibles, out-of-network providers (as if some other PT would be interchangeable with Susan’s in-depth, specific training! as if any-old brace would be as effective as the one Luke built her!).  I curse Blue Cross Blue Shield now when we drive by their building.  Sophie’s brace is now the most expensive thing we own, second only to our house (we kind of have crappy cars, but still).  This is crazy! /endrant. Thank goodness for generous grandparents or I don’t know what we would have done.  Thank you grandparents!!!

Fast forward five months.

September to February, passing in a blur of stress and travel, then boom, it was time to head out-of-state once more for our fancy schmancy scoliosis expert doctor appointment and a new x-ray—this one taken with Sophie out-of-brace for 48 hours—and this is what we found:

sophie 9:16

sophie 2:11:2016 225

Look at the bottom curve!  From 45 degrees down to 29!!  And the top is down, too, if only 5 degrees, still, it’s 50, not 56, that is, NOT GETTING WORSE. The doctor, this mild-mannered, intensely smart man, came in with a bit of wonder and said in near deadpan, “Well, your progress is spectacular.”

Here’s the thing: remember I said she looks straight? She looks great.  And scoliosis is a cosmetic issue up to the point of organ pressure and we’re not there.  Sooo…if she holds, even as crooked as she is, she’s golden.  Holding was the minimum effective result we were looking for.  The curve not progressing.  Holding.

This was so much better than that!

We were jumping up and down and hugging.  Surgery is off the table for the foreseeable future (although it remains a possibility years from now depending on how things go).  Sophie did it!  She even grew two inches—some of which was coming out of the curve, some of it regular growth, but that was growth UP not sideways.  More indication that the curve is not progressing.

So.  Much.  Relief.

We chose a path, and so far it’s working.  We’ll keep doing what we’re doing (what she’s doing, mostly, I’m just the driver, cheerleader, and bill-payer at this point), and we’re to check back in in six months.

Of course, of course, these are still some big curves.  It’s a brace and daily exercises for Sophie for probably years.  It’s the much-better-than-the-alternative but still the not-very-great option.  In fact, it’s kind of the sucks-a-lot option. But it’s the best she’s got at the moment.  There’s a long way to go.

Everyone gets a pile of shit they have to carry in their lifetime.  This is part of Sophie’s pile.  I wish I could carry it for her, I do everything I can, but ultimately, she’s the one in that body.  This is her life.  But she’s been taking this head on.  She’s amazingly strong inside, as well as out.

She impresses the hell out of me.

I wanted to write this post because when I was in full-on research mode I so appreciated any family-accounts that I could find.  Reading the studies, full of statistics and faceless girls (it’s mostly girls) is one thing (and important).  Hearing real people’s stories is another, and so needed.  Especially good stories.  I’ll update this post as Sophie’s story progresses.  I fervently hope it continues to be good news.

ETA: For a Sophie/Maya co-post about life in the brace, see this post.

ETA: March 2017.  After eighteen months in it, Sophie, now thirteen, is weaning off the brace.  She is done growing and so her doc has her coming out of the brace gradually, over six months (gradual weaning lessens the chance that the spine will sag back into worse shape).  The main thing: her curves did not get any bigger.  We’re really happy about that!  And now, with her growth done, the chance of progression is much, much lower.  So basically, by holding and not progressing during her growth spurt, she bought herself time and space.  If she is happy in her body looks/pain-wise, there is no need to pursue further treatment.  She looks great, and has no problems—except trampolines.  Apparently trampolines really hurt.  So, she’s done!  Actually, what her doc said: You worked hard and you got yourself through the danger zone.  Now, go, live your life! 🙂

Sophie at 12 yrs old, in her brace, betcha can’t tell, she’s a master of bending fashion to her will (peplum coat, pinstripe vest, combat boots….):sophie in her brace, a stylish

 

five random things we did this week

1- Visiting a real live Tibetan Sand Mandala

Every couple of years a group of Tibetan Monks from the Drepung Monastery come through the area and throw down some gorgeous sand art in the form of one of their amazing mandalas.  You can go watch them making it, and then when they’re done, they sweep it all up and, with appropriate ritual and care, toss it into the river.  Here is this year’s mandala completed.

sand mandala

It’s the Amitayus Mandala, the Buddha of Boundless Life.  I’m not sure what boundless life is, but it sounds good.  Here is a cool page about the construction process.  Candy colored and intricate!

The monks we met were shy and friendly (and wearing running shoes the color of the their magenta robes, I loved that).  People were meditating all around it, which gave a certain vibe to the proceedings—lots of bowing and nodding and smiling.

I always get the feeling that if one could look at the energetic planes of super-spiritual-something-or-other where these mandalas exist, surely they are 3-d, rising up off the floor and towering over our heads, a huge castle with fancy turrets and gingerbread decorations.  You know what I mean?  Or, alternately, I’m a 3-d person looking at the 2-d universe, fully alive just…flat.  Only I think the mandala must be several ‘ds’ above us and they are looking down into our world like we are the flat ones….

2- Kitten therapy!

Playing with a kitten, or, say, watching a kitten battle a piece of toilet paper, or a piece of string, or its own tail—anything, really—has undeniable positive impact on one’s brain chemistry, cortisol levels, and general well-being.  Call it Kitten Therapy (TM). Basically, if you have a chance to be around happy kittens, you should totally do it.  It will add years to your life.

kitten therapy

Here is our kitten, brought home from my Granddaddy’s old boat barn, once merely feral, now a CRAZY BEAST OF PURRING CLAW AND FUZZ DOMINATION.  He plays non-stop, full-on, attacking anything the moves with great pleasure and gusto.  Falling over is no deterrent.  (Our older cat Momo hates him.)  We’ve been calling him Jupiter, Ju-Ju-Bee, June Bug, and Juice Box.  He doesn’t care.  He only pays any attention when we say, “kitty kitty…”  Or, as I like to do, stomp into the Noah House where he is living and roar, in a low, growly, aggressive voice, “KITTEN!!!”  He always comes out running and purring and ready for Mad Max Fury Road paws-to-the-wall action for that.

Kittens don’t come along very often and they only last for a month or two.  Must soak up all the kitten-ness I…possibly…can!

3- Kids VS The Dads: Soccer SMACK DOWN

Park day brought out an unusual number of Dads the other day and somehow it turned into an epic battle for soccer supremacy.  Competition was fierce.  Rules were hotly debated, such as the controversial scoring against your own team by accidentally backing through the goal-line while carrying the ball foul.  (Oops.)  Who’s turn was really it to throw the ball back in?  Who’s shoes would be used as goal posts?  Could (the now) barefoot players really hold their own against those wearing combat boots?

soccer

Shorties vs the Talls, WHO WOULD WIN?

4- Ice skating on the hottest day of the year (so far).

90 degrees!  I know, I know, it’s only going to get hotter.  August around here often hits 100.  But sheesh, it seemed plenty hot to me.  Time to hit the indoor ice skating rink!

ice skating 1

It was Sophie and Luc’s first time.  Darn good thing kids are made of rubber because they fell down.  A lot.  Still, they kept laughing and popping back up, so I guess it was okay.  Bonus round: open mouthed staring after they cleared the rink for the figure-skating crew.  Oh la la, so fancy with their flippie moves and twirls.

5- Pizza from scratch!

I turned Ghost Fugue over to my intrepid copy editor at the end of last week and, possibly as a result, I had several days of feeling lost and adrift.

“I’ve lost the will to live,” I told the kids.  “I need an easy, short-term goal to keep me going.”

They suggested cooking.  Good idea!  Somehow we narrowed the options down to homemade pizza.

We used this recipe, which was awesome.

But making dough from scratch seemed to warrant a new pizza pan, rather than trying to make due with our warped, dented, encrusted cookie sheets.  I looked for a silicone pastry mat, too, for rolling it out but couldn’t find one.  “What about a pizza stone?  Do we need one of those?”  I said.

“Naw,” said SuperHubby.  “What we need is to build a cob pizza oven.”

Sophie groaned.  “I just want some lunch!  The cookie sheets are fine!”  She’s so practical.

I did buy the pizza pan.  $8 bucks!  What a pretty, round pizza it made!  Here it is before cooking:

pizza 1

Luc only likes cheese pizza, so you can see his little section over there.  The rest is triple cheese, mushrooms, olives, and fresh oregano.  Here it is after it cooked:

pizza 2

O. M. G.  It was good.  REALLY REALLY good.  Maybe the best pizza I’ve ever had.  It totally restore my will to live for, like, hours.

And that’s it, five random things we did this week.  Nothing too fancy, but it suited us just fine.

how to talk with your kids about sex

The fact that this is even a question shows just how sex-negative our culture is, don’t you think?  I mean, no one is out there writing articles on “how to talk to your kids about rhinoceroses.”  And look, I’m not putting myself out there as an expert—if my kids hit twenty and can chime in and say, yeah mom, you did all right, then I’ll say I’m an expert.  But after hearing some moms the other day talking about pussyfooting around, feeling awkward, leaving books on their tween daughter’s beds, etc—especially when I know these same women chat with each other about sex—I feel like I might have something to say about this.

Short answer:  you never DON’T talk about sex with them.  Just like you don’t not talk about rhinoceroses.  When it comes up, it’s in the discussion for a bit, and then the conversation moves on.  As all conversations do.  This way sex is never a THING and you never have A TALK.  It’s just…normal.

Longer answer.  Little kids ask great questions.  When we used to take our goats on “dates” with a local stud (his name was Cowboy, no seriously, it was) little Sophie would go along and one day she asked me, “What does licking and climbing on have to do with getting pregnant?”  I gave her a short answer that included the guy getting his sperm/DNA in contact with the girl’s egg/DNA (because we’d just watched a Hulk episode about DNA and had talked about it, so I could piggy back a little) in order to get the whole recipe for making that particular baby into the mom, who cooked the baby until it was ready to be born.  Plus it feels good.  She said, “oh.”  It was maybe two minutes.  The conversation moved on.  That was the start.  Or, ha, I remember little Luc asking me at some point—and I can’t for the life of me remember the context! curses!—“wait, you mean sex feels good?”  Great questions, right?

My point is, in the beginning, kids are not embarrassed.  They ask the right questions.  It’s up to the parents not to mess that up.

So, for those who want a how-to LIST:

1) No embarrassment.  Straight-face.  Laugh.  Give good information.  Never hedge. Never lie or cover up. That way you retain your reputation as a Source of Good Information when they really need it.

2) Start when they are little, with their very first questions.  There is no “when you’re older” or “you’re too young to talk about that.” If you turn them away once, they may never ask you again, like when they are teenagers and need birth control.  You want them to still be asking when they are teenagers and need birth control!

3) At the same time, answer their questions exactly to the degree that they want information and not one syllable beyond that.  Don’t be Over Sharing Mom.  Four year old Sophie did not want Anais Nin to fill her in on the details of goat babies.  (Sixteen or eighteen or twenty-four year old Sophie might need the Anais Nin version–I hope we’re still talking as openly at that point!  THAT is the goal here.)  Pay attention to their cues.  Stop talking before they are bored or uncomfortable.

4) When sexuality crosses you and your kid’s paths (songs, jokes, ads, tv, life, etc, because it’s everywhere),  just naturally discuss whatever comes up.  Movies and tv are great for this, but it can be whatever.  Things that have to do with sex in some way come up all the time.  Don’t avoid them.

Bonus round: The car is a great place for this sort of stuff, because no one is looking at anyone and there is comfortable room for long silences.  But anywhere is fine, getting at it in the moment rather than waiting for A Talk is the best.  Don’t let talking about sexuality get a weird mojo around it.

That’s the basics.

Luc is nine.  Right now he hates anything to do with romance, or sex, or ugh, god, KISSING.  He says, “Don’t say that word!  Say ‘the S word’!”  I respect that.

Sophie is a mature eleven.  She watches anime which is sometimes full of fan service (usually panty shots and boobs, occasionally dream-boat bishounen) and often very strange ideas about gender roles.  We talk about feminism, and portrayal of women, the jokes about wood, body image, “that’s what she said” type jokes, and the strong possibility that those two guy characters are secretly dating.  I remember being eleven, I was trying stuff out on my own, I was interested. The hormones were there.  They’re there for her, too. And I want to be a resource for her, to whatever degree she wants me to be–and not in some awkward, formal “if you have any questions” way, but in a “we just talk about this, it’s normal” way.  Which means lots of little interactions when it isn’t high-stakes (low stakes: not about her, high stakes: about her).  Much easier to talk about tv show characters and hypotheticals (low stakes!) and build up the ease and trust that way.  It’s ridiculously hard if we’ve never talked about it and she’s sixteen and worried she’s got an std.  Don’t wait till then because its too late.

There is a moment when I say something out-loud for the first time that feels a little heart-pounding to me—me who was raised in a home where We Do Not Talk About Sex—and that moment is so important.  It takes whatever it is out of Taboo Land and puts it in Topics Up For Discussion territory.  I have to push through the taboo in myself, just to get the words spoken.  It’s like deflating balloons, though, because once I’ve said it, the weirdness in myself goes away really quickly.

For example.  The three of us were getting ready for bed the other night, brushing our teeth, finding pjs, etc and Luc asked me what I did that day while they were visiting their aunt.  I hesitated.   Because what I did was fuck my husband stupid.  So I was faced with a choice.  I could lie, I could cover, because I felt nervous (throwback to my childhood)—but why do that?  Why lie?  If I do, I’ve installed a taboo, which means maybe in six, or four, or eight years, when Luc has a girlfriend or a boyfriend and he’s getting it on, or thinking about getting it on, he probably will think he can’t tell me about it.  Because I will have set the precedent that We Don’t Talk About When We Have Sex.

So I said, “Your dad and I had some awesome, um, S-Word.”

He made a face.  “Why?” As in, why would you willingly participate in something so GROSS?!

I said, “Because we like each other!  And it’s fun.”

Sophie laughed.  “They are a couple.  It’s what they do.”

Which I was glad to hear, her easy laughing, the normality of her response.

“Whatever,” said Luc.  “I don’t get it.”  And the conversation moved on.

A tiny interaction.  But now it’s in the mix. It could come up again, more easily now that it’s on the table. It’s not a big mysterious secret that Dad and Mom are doing…things.  So maybe it doesn’t have to be a secret when they start, either.

Lots of little interactions where sex isn’t A SECRET build up to sex being just another topic.  If you want it to be easy and normal to talk about sex when they are teenagers, you have to normalize it all along.

Boom.  And that’s how you talk WITH (not TO) your kids about sex.

Sidebar:  I do have a couple of books around, books that I’ve pointed out to them and said, “Hey, I got this book, I think it’s pretty informative and not stupid.  Feel free to look at it if you want.”  They’re usually, “whatever,” and I drop it.  But the books are there, a curated collection, rather than Random Shit Off The Internet.  Sometimes you want info but you want it in private, and you don’t want to have to ask your mom.  That’s cool.  Books are good for that.

So, in case you’re interested, S.E.X. by Heather Corinna is great, with lots of discussion about tricky topics like consent, feelings, choices, plus in depth on physiology, birth control, sti’s, based on solid science.  From the creator of the excellent site Scarlateen.com, which I also recommend.  Another one that is shorter is Sex: a book for teens by Nikol Hassler. Good, more basic than the other one, more of a how-to with information about birth control, safe sex, etc. and less of the psychological.  Plus it’s funny and a bit less of a commitment because it looks small, with not too many pages, and has cows humping on the cover.  No really, it does.

snow, terraria, and getting into the action

Sophie: “Hey, Mom, what’s the difference between a snow man and snow woman?” Luc: “SNOW BALLS!” And he throws three of them at me.

snow 2015

Our pond, frozen enough to sit on

Down here in North Carolina, snow is rare and exciting, and today was the day, the snow of the winter.  The kids rushed out first thing, still in their jammies, coats hastily thrown on top, me hobbling out behind, afraid of falling on the slick ice.  “Mom! Mom!  IT’S SNOOOOWWWW!!!”

“Here, take this walking stick,” said Luc, skidding up to me with a board, part of a dismantled hammock.  I took it, grateful, thinking, You know, hammock weather is really more my style. 

“Too bad we don’t have shoes with cleats for you,” he added, slipping and sliding away.  “Then we could walk up cliffs!”

To which Sophie added, “Stay on this tire track, it’s softer!” as she whizzed by, Henry galloping ahead, pulling her behind like a sled.

“Be caref–” I started to say…but naaa.  She’ll be fine.  And I trudged after them, taking pictures.

For the past ten years, going out into the world with them, I’ve always been the one with more experience, more knowledge, more physical strength, more money, more power.  Not so, today.  Foreshadowing of things to come.

TerrariaIt was a strikingly familiar feeling to a couple of days ago when I sat down and played Terraria with them for the first time, starting a new character (I named her Sriracha), letting them show me the ropes of mining and monster hunting.  I gave Siri giant, spiky pink hair so I could recognize her more easily on the screen. Because I’m old and the dang characters are like, sixteen pixels high.  “How do these controls work again?”

The kids have been playing Terraria for over a year, their characters are all OP (over-powered) and they’ve got mad skilz.  While I attempted to walk/bounce up a cliff they buzzed around me, killing a goblin army, giving me weapons I couldn’t figure out how to use, crafting me armor for my safety.  “What’s this shiny stuff?” I would ask, poking the ground, while their characters jumped and darted from here to there on the screen, “Mom! Look at this! Mom, put on this meteorite armor!  Mom, here’s a spear, and eat this heart crystal!  Mom!”

Me: “Um, I think I fell in a hole again.”

They really, really loved that I was playing with them.  “You’re so adorable as Sriracha,” said Sophie.  And Luc want4r to take care of me, it was very sweet.  “I got you a rainhat, Mommy, so your hair won’t get wet.”  Meaning an in-game hat, of course.

“But that will cover my pink hair….”  And how will I know which blip is me?

Honestly, I’ve been happy in my role as tech-support all these years, but I’ve done very little actual gaming. I’m suddenly smacking my palm to my forehead about this.  I run the Minecraft server, I install games, I look-up walk-throughs, I’ve even built computers.  But actual playing…not so much.  I don’t have time.  And anyway, I get stressed out instead of have fun.  It’s just not my scene.  [whiny voice is whiny]

But they liked it sooooo much…..

I begin to see that it’s like going for a snow walk—it’s rare and the kids adore it.  It’s great when I help suit them up and have hot chocolate waiting for them when they get back, but they really love it when I’m out there with them.  And how many more years are they even going to want to play with me?  I think…I’ve just got to do it.  I’ve got to become enough of a gamer so that I’m not just tech-support.  I need to get on the field.  While I still can.  While I’m still invited.

I can do this.  I used to love gaming when I was a kid, Jump-man and text-adventures and and…Pong.  (Again with the old.)  Yeah.  I can do this.

I’m going in.

Taking a snow bath.

Taking a snow bath.

lucisms part 4

My little guy, Luc, 9, is hilarious.  I’ve done a couple of posts on Luc-isms over the years.  He constantly says things that surprise me.  For example, the other night, lights out, I realize I’ve forgotten to turn on the alarm and say into the dark, “Can you turn on the alarm?  I forgot.”

Luc answers in superhero voice: “I will find it using…my sense of smell.”

I…would never have thought of that.

He’s also always seeing things I miss.  Like the other day in Whole Foods he pulls me down to whisper solemnly into my ear, “grass roots…begin to grow.”

“Wha–?”

Finally I notice this enigmatic phrase is printed on the wall as part of a “history of organic foods movement” display.  His delivery turned it into some kind of spy phrase, for which I am supposed to have the encoded reply. Serious, even deadly.  Now we whisper this to each other frequently.

Or this, in the shoe store, buying boots for Sophie last month, he calls, all urgent excitement, “Mom!  Mom!  Come here!”

I walk over.  “Yeah?”

Whispered intently: “LOOK.”

I see shoes on display, customers, chairs.  “Um?”

He points.  “Foot mirror.”

HAHA—he’d zeroed in on the short, angled mirror that reflects people’s feet, presumably in the shoes they are trying on.  I had barely registered that the thing was there.  He spends several moments admiring his feet in different positions.  “This is awesome. I never knew I needed a foot mirror.”  He’s always got a different perspective.

His favorite question is, of course, who would win.

“Who do you think would win, Hulk or Yoda?”

I have to be ready for these at a moment’s notice.  “You know, actually, I don’t think those two would fight. I can’t see either one attacking the other.”

“Well,” he says.  “They are both green.”

HAHAHA!  So true.

Sophie, my eldest, has her own moments of comic genius.  Like last night:

Husband, flipping through Netflix options, “I think this show may be a bit too intense for the kids, what do you think?  Maybe when they’re bigger.”

Sophie: “What, you mean your balls?”

Oh my god, we were laughing so hard.

Isn’t laughing at silly stuff like this just the best thing EVER?  It seems to me you’ve just got to salt your life with as much silly laughing as possible, the more the better, or else what’s the point?

my son has mermaid hair and I am intensely jealous

Luc, 8, has never cut his hair.  As in never.  The fringe ends of his hair are the baby fuzz he was born with.

luc hair 1

His hair has grown down to his cute little butt now and is this gorgeous golden yellow.  It’s amazing.  I covet it, I do.  It’s my shameful secret.

luc hair 4

Here’s a totally bizarre fact: he never washes it.  Seriously!  Maybe once a year or if he spills food into it.  Before you call social services, please look at these pictures—he does not have dirty, greasy looking hair.  I have no idea why.  (And he does bathe the rest of himself daily, in case you were wondering.  I’m just saying.)

He hated, hated, to have me wash his hair as a baby, so I would only do it when it looked dirty.  But then it almost never looked dirty so I’d just remember suddenly that it had been a long time, and I would guiltily subject him to a washing….but the interval between washings stretched and stretched until I realized it had been months and still his hair didn’t look dirty, so….why were we washing it again?  I swear, it’s like the Bermuda Triangle or how the Egyptians built the pyramids.  His hair always looks like a million bucks with no effort on his part at all.

He does swim almost every day in the summer, so it gets rinsed in pond water four months out of the year….

luc hair 5

See?  Mermaid hair!  IT’S SO UNFAIR.

He usually wears it in a braid.  That is, I usually braid it for him.  I’m the hair wench.  Don’t tell anybody, but I kind of love doing this, playing with the pretty hair.  I fear the day when he’s all, “Mom, I can braid my own hair, sheesh.”  It’s coming all too soon.

luc hair 7

If you watch Adventure Time (you should! It’s cool!) you might remember the very first time young hero Finn removed his white bear hat.  It was season 2, ep 10, so had been a long time that we’d only seen Finn in the hat…long enough to forget that it was indeed a hat, and therefore removable.  And then suddenly he whips it off and:

When we saw that we all, literally, jumped up shouting, “It’s Luc!  It’s Luc’s hair!!”

Finn is a bad-ass adventurer, a boy of great bravery, mad sword skills, and long, flowing, yellow hair.  There is also Thor, with his abs, his hammer, and his long, flowing yellow hair.  You don’t get more manly than Thor.  (See here for our first realization that LUC IS THOR.)

thor with hairNot as long and magical as Luc’s, but still pretty.  I’d braid it for him.

It might be due partly to Finn and Thor, but Luc has zero worries about having “girly” hair.  It never crosses his mind.  Has has BAD-ASS HEROIC HAIR and he knows it.

Despite this, the probability that someone will assume Luc is a girl when we are out is nearly 100%.  I’ve even had people question me when I correct them, as if I  might not know for sure, or possibly they think I think they are referring to some other kid.  Nope, he really is a guy!  A guy’s guy!  He has a weapons locker the size of a house, about a hundred toy dinosaurs, he wears boxers, and he will happily discuss who will win in a fight with any pairing you can imagine for hours.

And hey, I’m not saying that boys have to do these things or that girls can’t or won’t…I’m just saying that in all other culturally common gender markers, my little dude is, well, a dude.

A polite, “Actually, he’s a boy,” from me, or, “Actually, I’m a boy,” from him, and most people catch on quick and feel embarrassed they’ve gotten it wrong (no need, it’s a common mistake).  But some people really can’t grok it.  “This kid right here, this is a boy?” Incredulous looks. “Yes.  This is Luc, my son.  He is a boy.”

Other times we just shrug and let him be a girl in their mind long enough to check out at the register or whatever….

Luc is un-phased by this.  He really seems confident in his own masculinity.  He’s like, whatever.  I know I’m a boy.  Why should I care what they think?  He’s so cool.

The second thing people say is, “How long are you going to let him go like that?” or maybe “I could never let my son do that” or even, “I cried when I cut my son’s hair.”  To which I always reply, “It’s his hair.  His choice.”  Seriously!  It’s his body!  He can do what he wants to with his own hair. I’m shocked at how many people feel the need to control their kid’s bodies to this degree.  Hair is not a big deal.  It’s his hair.  He gets to pick.

I mean, if, say, my husband, made me cut my hair into the shape he felt was appropriate, I can tell you right now, I would NOT be thinking, “wow, we have such a great relationship.”  So why would I do that my kid, who I want to have a great relationship with?

The third most common thing people ask is, “doesn’t it get in his way?”

No.

luc hair 6

Unless you live in a place where conformity is a life or death sort of issue, hair is just this protein that grows out of your scalp.  Sometimes it is amazing and gorgeous like Luc’s—he won the hair lottery, for sure—and sometimes it’s little frizzy wisps like mine (SOB).  Maybe he’ll shave his head, or dread it, or mohawk it, or color it, or get a super conservative Normal-Guy cut.  Or all of these at different times.  It’s his hair.  He’ll have his reasons.  That’s fine with me.  I have had my reasons for doing all of these things with my thin, curly, scalp protein, at various times in my life, too.

Luc’s dad, SuperCoolHusband, had butt-length black hair when I met him.  It was hot.  Like, Native American day-um kind of hot.  He cut it when he got a real job after college.  I cried.  I still have it, the hair, in a box in my filing cabinet.

One day Luc will cut his.  I’ll probably cry then, too.  I wonder if he’ll let me keep it?  (Or he might have a partner-to-be by then who gets dibs?)

Moral of the story:  The rules lie!  Boys can have long pretty hair and be bad-asses.  Parents can support kids in having the appearance they want.  Heck you don’t even have to wash your hair, and I thought that last one was a truism.  But nope.

thor and loki

state mandated tests for kids are torture devices designed by demons who hate me

AAARG, I’m ready to scratch my eyes out, the kids are doing the North Carolina required academic test that homeschoolers have to plow through each year end, goddess save me from multiple-choice hell.  It’s worse even than Hulu commercials.

Although it IS kind of interesting to watch the kids and their emerging test-taking styles.  Sophie grinds through each question, plod, plod, snacks help, don’t interrupt her flow or it will take her fifteen minutes to get it back, she’s going to finish this fucking thing no matter what. It’s like a vendetta with her.

Luc, on the other hand, tricks out each question, sussing out the answers as much from deductive removal of options as from answering the actual question at hand: A is stupid, B is obvious red herring, therefore it must be C.  Or, if I read the last sentence I can get the answer to this without reading the whole thing…etc.  Like the way he does math: to multiply, say, 24 x 6, he doesn’t work through the steps, 6×4, 6×2, etc, with a pencil, that would take too long.  Instead he does it in his head by doing 20x 6, 4×6, and then adding them together.  To subtract nine, he quickly subtracts ten and adds one in his head.  So tricky, my little boy.

But oh, how he hates it.  “NO, not more!  I’m so BOOOORED.”

Talk about boring.  I’m about to die.  Because I can read the word, or do the math, or know what should be capitalized in this sentence, but I can’t say anything.  I have to watch them struggle, or get it wrong, or get distracted for the twentieth time and keep my mouth shut.  I can’t even show any facial expressions because Luc is examining me minutely for clues.  Part of his strategy is tricking me into revealing the answer with an eyebrow twitch.  He’s very good at it.  Apparently I would be a terrible poker player. I’m going to have to start wearing a bag over my head.

I’ve been dealing with all of this by youtubing old Julia Child videos.  Quite unexpectedly, I find Julia helps me to stand being there at the table to answer questions (which mostly I can’t answer),  and to keep the kids from sitting around chatting or just generally falling into a morass of unfocused, glazed, despair. (“You can’t answer questions if you are hanging upside down out of your chair. How about sitting up and squeezing just one more out.  Then we’ll take a break.”) Julia keeps me from slitting my wrists.

If you want a dadaist test-administering experience, I recommend sipping sake, watching Julia, and helping kids fill in stupid bubbles with #2 pencils. Because Julia is hilarious and marvelous and totally lovable.  That’s a fact.

Some of the questions are so DUMB and often bizarrely outdated feeling, or ethnocentric.  Like questions about writing down phone messages, when all anyone does now is leave voicemail on someone’s cell phone, or, sends a text.  It’s like IQ tests used for gorillas who can use sign language: Of the five following things, which two are good to eat? 1-flower, 2-block 3-shoe 4-ice cream.  A gorilla will answer 1-flower, but it will be marked wrong. Luc, especially, is full of logical reasons why the “right” answer is the “wrong” one.

Really, testing is the absolute worst of school (minus the bullying and the cafeteria lunches) distilled down into one torture device designed to make you hate the things it purports to test.

Plus there is this sort of thing:  Luc, technically in 2nd grade, is doing 4th grade math, and Sophie, technically in 4th grade is reading at a 7th grade level.  This without ever doing any school or study.  My kids are great, but they aren’t savants.  It’s just that SCHOOL IS SUCH A SCAM.  Seriously, school is totally unnecessary for learning this stuff! Yeah, when you get further along and want to specialize beyond the general knowledge stuff that they cover in elementary school, sure, school can be great.  You have a goal, you want to learn X, you go learn it.  University for the win!  But elementary school?  SUCH a waste of kid’s precious time.  They’re kids, with that wonderful kid perspective, for such a short time.  If they’re in school, the mass of those few years gets squandered doing unnecessary busywork.  I really believe this.

Okay, to be fair, North Carolina is an easy state to home school in.  It’s not like Maryland, say, where you have to come up with a portfolio of what your kid did all year, a portfolio that the state might reject.  Imagine having to justify your life to some stranger!  Screw that.  In comparison the test isn’t so bad—a few days of torture and then we’re free for another year.  So there is that.  If I can survive.

Oh god, two more days to go.  I need some really wickedly awesome reward after this.

Remember, if no one is watching, you can use the sides of your hands!