Dakota, my big malamute, is straining at the leash, pulling me forward.  But Jessica, my young daughter, is dawdling ten steps behind. As usual, Taz and I are caught in the middle.  Taz, my mid-size, part-cocker spaniel, part-chow mutt, stands patiently by my left foot while I sort the others out.  I tell Dakota, “Heel!” and say to Jessica, “Hurry up!”  They both listen for about nine seconds.  Then Dakota lunges forward as she catches a scent and Jessica slows to a near-standstill, gazing up at the tall pines that surround the road, her body tall and straight despite the hospitalizations and surgeries that have pockmarked her young life.  Eagerness for life, for adventure, shines from big brown eyes that never recognized me until after a neurosurgeon removed half her brain to slow the seizures.  The surgery left her with a crooked smile and me with the fear that she is much too fragile for this world. 

Still dawdling, Jessica brushes her golden brown bangs back, dislodging the black knit cap, her small hands awkward in the much-loathed mittens, which she argues that she doesn’t need.  She will argue about anything but it’s true that she’s impervious to cold.  Also to darkness and to fear.  I call her Jessica the Lionhearted and sometimes wish she’d lend me her courage.  She does not yield to her fragility the way I yield to mine.

“Snow in the trees,” Jessica points out.  Yes, snow in the trees, I tell her.  And snow on the road and in our boots.  Three feet of snow on the ground and more falling.  Some of it falls like glitter on the dogs.

“No more walks,” I threaten Jessica and Dakota.  I wouldn’t be reduced to this if either one of them would listen to me and compromise.  Taz gives me an adoring, sympathetic look and goes at exactly the pace I set.  I call her my good dog, meaning something along the lines of, “sentient being capable of compromising for the sake of the pack.”  Dakota feels she alone knows what’s good for the pack and she constantly vies with me for alpha dog status.  For the past ten years I have tried to stop her dominance behavior but she still tests me.  It must be like that in a wolf pack.  Dakota has two paws in the wild and two paws in the domestic world.  She understands the universe in a way I never will.  At any rate, I don’t call Dakota my good dog.  She’s my crazy puppy, my big ole wolf, my sweet girl, but not by any stretch of the imagination, my good dog. 

What brought me – a plainswoman, accustomed to seeing the blue unbroken sky – here – the North Woods of Minnesota in winter – started with a minor head injury in August that left with me with ongoing vertigo, and continued with a professional crisis that deepened into a personal one as well.  By November, I had no place to stay and no money to ease the situation.  At the time it seemed like a temporary emergency had precipitated the events but looking back I realize that the disaster had been a long time coming.  I’d been working too hard and for too long on projects that no longer interested me, trusting the words of advisors whose ambitions weren’t mine, not listening to my heart when it said, this isn’t the right thing to do.  I’d made the mistake of thinking what Jessica needed had something to do with the number of things I could buy her, despite my heart that said, she just wants to be with you.  Somehow, no matter how hard I worked, it was never enough.  There was always more to do, more I needed, more I had to acquire for Jessica.  I found strength in the approval of other people.  The gossamer center of my self was much too delicate to withstand the pressure of living my life in my own way. 

When I poured out my story to my sister, I did not know that the crack on my head would lead to a new life.  I liked the old one well enough.  I thought I could get it back.

My sister listened and said, doubtfully, “I guess you could always stay at my cabin on the lake.”  Doubtfully because it’s remote and cold and she didn’t think I knew what I’d be getting into.  But it was this or live in my car.  

So here I am surrounded by thousands of towering pines and birches that creak and sway in the wind, struggling through three feet of snow for two miles just to get to the mailbox.  In the small town in Kansas where I lived, I only had to cross the street to get the mail.  There, on the prairie, you could see for miles.  Out here, you could be ambushed by a wild animal or a drunk hunter and never see it coming.  Shapes dart through the trees and I catch them only in my peripheral vision.  So far it has been deer, shying nervously away from the dogs.  I can tell from the tracks.  But that doesn’t mean it couldn’t be something else one day.

The lack of wide open spaces is not the only thing I find alarming.  I tell my friends it’s quiet here, but that’s not really true.  The sounds are just different.  Instead of traffic noise, school children laughing, and music blaring, I hear the wind whisper and the eagles cry.  On my first walk in these woods, my heart leapt into my throat as the trees creaked in the wind.  It sounded exactly like someone opening a door and creeping across the floor.  My mind couldn’t process it, could find no reasonable explanation.  I peered anxiously among the trees, trying to spot the door I knew must be hidden there, thinking if I looked hard enough I could see it opening.

Then there’s the cold.  Stepping outside, all of your senses but one shut down and all your brain can focus on is how cold you are.  You can’t see or hear or smell or taste.  All you can do is feel the cold.  When it’s forty below, you know that one small mistake means disaster.  I envision Jess or the dogs breaking through the ice on the lake and make stern rules about asking permission to leave the house.  I worry that I will slip and fall in the snow and never get up again.  I worry that the furnace, which has an electric starter, will fail, or the electricity will go out and we’ll have no heat.  There’s a wood-burning stove but I’m not entirely confident that would be enough to keep us from freezing to death.  We are so vulnerable, I think.  I am not sure we will make it, but what choice do we have?

Other things also make me nervous about my new home.  I know there are moose out here and I worry about crossing their path.  I have spent almost fifteen years learning martial arts and self defense but I know my sidekick would never save me from a stag in rut.  The bears that inhabit these woods are in hibernation now, but I’ve no doubt they’ll come exploring as soon as the ice thaws.  I’ve seen the tracks of the wolves, and know there’s a pack of about six of them someways east of the cabin.  Sometimes at twilight Dakota howls to them.  I hope she is saying, stay away and not, come and play.

I worry about Jessica, who has had so many medical problems in her life that I feel my entire experience of mothering has been one long, caught breath.  When we walk, I am constantly afraid that something will happen – she’ll fall and get hurt, or that afore-mentioned moose will show up and trample her.  I’m afraid her seizures will begin and not stop; I am afraid her shunt will fail; I am afraid her penchant for adventure will drown her in the lake when I’m not looking. 

I worry about someone seeing Dakota and mistaking her for a wolf, which is why I keep her on a leash during our walks.  Only one or two people live on the lake in winter, but you never know who’s poaching.  You never know what idiot’s going to take it into his brain to get the rifle down and shoot the wolf, even though she’s not a wolf.  I worry about Taz being overcome by the cold.  She thinks she’s a lapdog, entitled to every luxury of indoor life, and out here the snow packs into her paws and the shapes in the trees scare her, too.

Mostly I worry that I will return to an answering machine with no messages.  Nobody wants me.  More precisely, nobody wants my work.  Before, the phone never stopped ringing.  I had to hire an assistant so I could get my work done.  But now the silence is eerie and foreboding.  I feel compelled, at first, to go on these walks, to leave the silent empty cabin.  The walks do not relax or reassure me. 

But there is always hot chocolate after.  The first day, I got cocoa and sugar out and heated milk on the stove and Jessica watched silently, her cheeks bright with cold, until she finally felt compelled to say, “What is that?” and I realized she had never had hot chocolate before.  Because I had never had time to make it before.  Now it’s a daily ritual. Time is something we have a lot of and there are so few demands on it.

While I may feel isolated, this isolation makes our lives extremely simple.  The nearest town is about an hour away, on terrible roads. I don’t have a four-wheel drive truck, just a little front-wheel drive passenger car and it doesn’t handle the roads well.  About once a month the weather cooperates (meaning the temperature climbs above zero and it doesn’t snow) and I get a contractor to plow the road.  Then I throw down a hundred pounds of sand and we drive to town, where I pick up packages from the post office and stock up on groceries and do laundry.  We stop by McDonald’s for dinner, a rare treat that was once a near-daily chore.  I am careful with my money because I don’t have much, but there is always exactly enough for what we need.  Food for us, and for the dogs.  Maybe another warm pair of socks. But we don’t need big screen televisions or fancy clothes or expensive toys.  Crayons and paints for Jessica, pens and paper for me. 

The isolation means that I cannot do this without Jessica’s help.  She stacks the wood in the cellar, prepares the dogs’ food and water, patches me up when I slice my hand on a kitchen knife.  In my eyes, her fragile figure transforms to a sturdy, strong young girl.  I begin to see that she might be capable of anything.  The chores give her faith in herself.  Someone depends on her, and this adds a lift to her chin and a glint of determination to her eyes.

Even so, I feel shattered.  To be here means I have failed at everything, that I barely have a toehold left on the mountain of my ambition.  My first impulse is to pick up the shards.  But I realize walking through these woods that there are parts I don’t want back.  The part of me driven to work without rest, the part of me that wants, wants, wants.  Immediate gratification is hard to come by up here, so instead of looking for external things to make me feel happy and fulfilled, I turn inward.  I write what I want to write and I meditate and I go for walks with Jessica and the dogs.  I watch the sun set over the lake, turning the sky lavender and orange, and see the snow fall on the pines, and on the dogs.  I start teaching Jessica to read and we cook simple meals together; rice and beans, broccoli stir fry, toasted cheese sandwiches.  The food delights us both.  We practice Tai Chi in the living room.

Gradually it dawns on me that this is sufficient.  My professional life may have fallen to pieces, but that doesn’t mean I have to as well.  I have everything I need: Jessica and the dogs; a place to write, and something to write about.  I start to believe that maybe I can live a new way; that I can write what is important to me, and in doing so make my way in the world.  I earn my living by my pen, but I don’t have to earn as much as I used to.  I can be content with less, and I can find my authentic voice.  The breaking has not destroyed my gossamer center, only revealed it, and my illusions.  The strength I thought I had was merely ego; the success no such thing because it was not my dream.  It was someone else’s.  

Now, as Jessica hangs back to stare up at the trees, Dakota begins straining at the leash in earnest, settling low to the ground and putting all the power of her deep chest into the effort.  I understand that I can’t keep her on this leash forever.  I tell myself that it will be all right.  I let her off and she runs as fast as she can down the road ahead of me, stopping for nothing, wriggling with the joy of speed.  But she doesn’t go too far before pausing to look back at me.  Are you coming? she seems to say, and starts sniffing at the side of the road, digging through snow banks, leaping effortlessly over drifts but always circling back, her curved tail wagging in delight. 

Taz, dancing along at my side, decides she wants to join Dakota and I let her off leash, too, and she dashes forward, shooting past Dakota.  They play a game of who’s the leader for a few minutes while I turn to wait for Jessica.  But the dogs’ antics have gotten her attention and she moves faster to catch up with Dakota.  Soon they are playing a game: when Jessica gets within a few feet of Dakota, Dakota dashes off, then pauses farther down the road.  Jessica runs to catch up and then Dakota takes off again.  Jessica is laughing so hard she can hardly keep running. 

I watch their joyous play and it gives me joy too.  Sometimes you just have to have faith, I tell myself.  That the little girl won’t fall and hurt herself, that the hunters have put away their rifles, that the dogs will come home again.

Taz bounds back to me.  She wants to be by my side.  She is my good dog.  I put her leash back on, and I take Jessica by the hand.  She is breathing hard from her running, but stays with me, chattering about the game she and Dakota have played. 

It’s twilight, time to go home.  I have to call Dakota twice but she comes barreling towards us, swerving at the last possible moment to slide by and screeches to a halt a few paces behind me.  She turns around, tongue lolling out of her mouth, grinning, and trots over to me and waits patiently as I snap the leash to her collar and we head for home.  The answering machine may be silent, but there is hot chocolate waiting, and everything we need. 

###

This essay first appeared in Minnesota Monthly about five years ago. The dogs are gone now, though Jessica and I still talk about them nearly every single day. Every year at this time, I think about them and that long, cold winter, and I’m grateful for every moment of our lives together.

Even so, I don’t think she realizes how rude the statement is, and it’s up to me to enlighten her.  The main problem with the lecture I’m about to embark upon is that she learned the phrase from me. I swear like a drunken sailor, even on a good day, and thirteen years of mothering hasn’t cleaned up my mouth yet.

“Honey,” I tell Jessica, “that’s not a very polite thing to say.”

“Oh,” she says.  “Is it like ‘shut up’?”

“Exactly,” I say.  “Let’s find another way to say what you mean.”

“Okay,” she agrees and ponders for a moment.  Then she says, “Mom, you’re being a jackass.”

I clear my throat. No, this is not one of those situations where you can ask, in righteous indignation, “Where did you learn that!?” I know exactly where she learned that.

I look at my feet, trying to figure out a reasonable way of teaching the lesson all parents must eventually teach: Do as I say, not as I do.  I have bright purple toenails and a toe ring with blue beads and suddenly I realize that all that’s missing is the tattoo on the small of my back and the cigarette dangling from the corner of my mouth and I’ll be one of Those Mothers.

Maybe I already am.  I gave up housekeeping years ago, along with religion and regular exercise. I have never appeared at a PTA meeting, and I think a slice of berry pie makes an excellent breakfast.  So I’m afraid I’m not going to win any mother of the year contests, since these appear to be based on serving healthful whole grains to one’s offspring, keeping sensitive ears free from foul language, and dousing the home environment in anti-bacterial soap on a daily basis.

I remind myself that there’s more than one way to be a good mother.  And I like the mother I am, the person I am, even though I do have a foul mouth.  If Jessica grows up separating housekeeping from mothering, I’ve got no complaints.  If she grows up and remembers that mom loved her more than life itself, I’m pretty sure the fact that I never helped out at the bake sale won’t affect her self esteem too much.

“Well,” I say, giving up on the lesson because I figure I ought to save being a hypocrite for an occasion when I really need it, “I’ll try to do better.”

I hustle her off to bed and tuck her in, a ritual I’m pretty sure she has no intention of outgrowing, and I say “Goodnight, sweet girl,” the way I have for all the years of her life and she hugs me and kisses me on both cheeks, like a European, and says, “I love you, beautiful mama,” just the way she always has since she learned to talk, and I know that for all my sins, I must be doing something right.  Even if sometimes I am a pain in the ask.

So, things are getting back to normal, or at least what’s normal for us. We’re surrounded by carnations (and princess figures). We’re still feeling the effects of all the warm thoughts and well-wishes from all the many people who sent them.

I want to thank everyone who sent flowers and cards, took the time to visit, took me at my word and donated to the Tuberous Sclerosis Alliance, and otherwise supported us in one way or another, even if it was just sparing a thought on August 10^th.

My deepest, heartfelt thanks to all of you. 

I intend to return this space to its regularly scheduled programming, but will be giving occasionally updates on Jessica, since y’all have expressed interest.

Yours,

Jennifer

For all of you out there who prayed for us, thought of us, hoped for us — thank you.  Jessica, her father, and I felt every one of those warm thoughts during the difficult hours of surgery and ICU.  We feel so very blessed that so many people cared so much to join us on this journey.

I will be back with more about Jessica when she comes home.

Hugs to every single one of you,

Jennifer

Then I shared the link on Twitter and Facebook.  Of the few hundred people to whom I’m linked by these sites, I figured ten of the people closest to me would read the post, and maybe three would leave encouraging remarks.

The next thing I knew, I was moderating hundreds of comments and my web master was e-mailing me, going, “You got twenty-two thousand hits in one day.”

So. Wow.

Lessons learned:

1. The universe may on occasion suck, but it is full of kind-hearted people who would, in the words of one commenter, give a small piece of their souls to make it better. I don’t think it’s possible for me to express how much the support, generosity, and kindness of absolute strangers has buoyed me and given me more much faith in the future than I have had in a long time. Thank you.
2. My ex-husband was not barking questions.  He was asking them.
3. All teasing aside, my ex-husband is, in fact, amazingly tolerant when you e-mail him, saying, “You should probably read this before the rest of the universe does.”  My daughter is lucky to have him as a father, and I’m lucky to have him as a friend.
4. You are not alone. I am not alone.  Before I break out into a verse of “Kumbaya,” let me just say that what touched me most was when people wrote to me and said, “I thought I was the only . . .” and how glad they were to find out they are not.
5. Spam comments are pretty funny when taken in the context of the intensity of this post and the response it generated. The spam comments are like little clueless space aliens wandering around Earth.
6. My friends mock me for having the plainest blog in the universe.  I have always said that the words matter. Not that I don’t appreciate design as much as the next person. Just that when you have a limited amount of time, resources, and energy, you have to put them in the words, not in the bells and whistles. Thank you for helping me prove that it’s the words that matter.
7. You guys have so many stories to tell.  I hope you will tell them, and that you will tell me when you’ve told them. One commenter remarked that it isn’t “Welcome to Holland,” it’s “Welcome to Cambodia.” I want to read her story. I want to read all of them.

Many of you have asked where you can send carnations to Jessica at the hospital. I am so moved by how so many people want to make one little girl’s day a little brighter.  I have given information to several people whom I know personally, so rest assured that Jessica will be surrounded by red carnations as soon as she wakes up from surgery. For anyone else feeling moved to do something for Jessica, I would love it if you would donate what flowers would cost to the Tuberous Sclerosis Alliance instead. This is the organization that supports research into the congenital disease Jessica has.  You can find out more information, including ways to donate, at www.tsalliance.org.

If there is another cause dear to your heart, please give to that instead. And call it a carnation for Jessica.

Many of you have also asked why I don’t write a book about my experiences with Jessica.  I have.  My agent, the indomitable Neil Salkind, has been trying to find a publisher for it since last August. We have received many rejections, mostly on the grounds of “it’s too painful; it won’t find an audience.”

I have never believed that, and your response to “For Jessica” is my validation. People want to read the truth, even if it is raw and makes them cry.  They want to be moved, to feel that there is more to life than just another bathroom to clean or a new pair of shoes to buy.

That does not mean there is an instant book deal, however. (I’m being rejected at the same brisk pace as always.) (That’s the life of a working writer, so I’m used to it.) But my agent did say, “Make this into an e-book, and sell it on your website, so the people who want to read it can read it.”

A good guy, Neil.  So, that’s what I’ve done.  I’ve saved the manuscript as a pdf file, so, again, no bells and whistles.  I uploaded it to e-junkie.  Some of the proceeds will go to the Tuberous Sclerosis Alliance; the rest will help defray the expenses associated with Jessica’s hospital stay.

Here’s the link.

Thank you–all of you–for your warm thoughts, wishes, and prayers. (Hey, I may not believe in a supreme Deity, but that doesn’t mean One doesn’t believe in me.)

I will post here once we’re back home from the hospital.  I’m deeply grateful to all of you.

At which all I could do was burst out laughing.  Because, well.  Duh. 

Only an academic would undertake a study like this, defining happiness as something along the lines of “satisfaction with life” and “feeling rewarded by your work.” If there’s an occupation more likely to make you feel incompetent and unrewarded than being a parent, I have never heard of it.

If you weren’t an academic, you might define happiness as the experience of being fully alive. To know grace, and despair, and the kind of hardness you have to learn to stand against; to watch your family fail you when you need them the most, and have your ex-husband look around, shrug his shoulders, and hold out his hand to help you up again.

Right.  Your ex-husband, so that you can learn a bit of gratitude, just enough to appreciate him, which you didn’t manage the first time around.

These are things you’d never know if you hadn’t had your daughter.  Things you wouldn’t have had to know, and learn the hard way, bitterly.

If the medical resident hadn’t sat down while you held your baby girl in the neonatal intensive care unit and said, “Your daughter’s brain is massively deformed.”

The daughter you loved even before she was born.  When she was an abstraction, a positive sign on a pregnancy test, before she kicked you in the ribs, long before she ever drew her first breath. Love you did not know you were capable of feeling, primal and angry and powerful, you would kill ten men and Satan if you had to.

But the universe doesn’t ask that from you. 

When your daughter is nine months old, a neurosurgeon will say to you, “We believe resecting the left side of her brain will help control the seizures.”

The seizures that she has all day, every day, dozens, hundreds; she was born with a massively deformed brain, what did you expect?

You think a minute, and you realize the doctor is saying they are going to take out half your daughter’s brain, and throw it away, so much trash, and you’re supposed to sign the consent form for this. 

And after the surgery, when the seizures come back, you will sit across the table from the man who is now your ex-husband, the man you adored, but life can kick the ass out of any romance, even yours, and you will order a very large glass of tequila, and you will say, “What the hell are we supposed to do now?”

And you hope the answer is going to be about slaying ten men and Satan, because you’re capable of that.  Yes.  Heroic action? You are totally down with that. But the answer is, you are going to go home and do the best you can to make a life out of what you’ve been given. 

And no one is going to give you any instructions, or any feedback, so no matter how well you’re doing, or how badly you’re screwing up, you won’t know either thing until maybe – maybe – at the end of your life, fifty years from now, you’ll be able to look back with some perspective and go, “Eh, should have done that differently.”

So you do the best you can.  You raise your daughter, and she is three years old before she learns to walk, seven years old before she learns to use a toilet, and mothers all around you are blathering their worry that their babies aren’t talking by twelve months, and you don’t even know what universe they live in, because in your universe, you had surgeons take out the left side of your daughter’s brain and throw it away.

You just got back from the hospital the fourth time or maybe the sixth time your daughter’s shunt has had to be revised – that is, yanked out and a new one put in because it stopped working, which means the pressure builds inside her skull, which could kill her – and the man (the man, you weren’t picking any goddamned boys this time, this time you found yourself a man) he says he’s not ready for someone like you. It’s just too intense.

What he means is he can’t deal with your daughter.  This is a story you will go through more agonizing times than you can count, with friends, with family, with work, with other men who don’t trust you when you say all you really want is to just get laid.  They will all say it differently, but you know why they’ve cut and run.  Hell, you would have, too.  If someone had told you ahead of time what was going to happen now?  Baby, you would have been on the next plane to Bolivia and fighting extradition every step of the way.

But they didn’t tell you ahead of time, and by the time you figured out that being her mother was going to make your life look like a nuclear bomb had detonated in the middle of it, it was too late, because she’s your daughter and you loved her even before she was born, so you’re a little biased and you can’t always see her clearly, and what you see is a high-spirited, ebullient girl with a stubborn streak, and other people see a slow-moving, cognitively-impaired kid who can’t be budged once she makes up her mind.

Well, screw them.

You say that a lot.  Screw them.

So, no, most times you’re not thinking about how happy this is making you. 

Sometimes, in fact, you’re thinking about how a long time ago, you were kind of a charming young woman who read a lot and married a nice guy, and you planned to go to Paris. 

And you never got there.

And somehow, maybe during the thirteenth hospital stay, or perhaps the fifteenth, your life had narrowed down to a few good things.  Your work, and your daughter.  Your three old friends, who knew you way back when you were kind of charming, and your three new friends, whom you refer to as the one who calls you “hard,” the one who calls you “contentious,” and the one who calls you “inflexible.”

Because it’s funny, and while they mean it, they don’t mind it, they even seem to admire it.  Your friends are warped, too.  Hey, it happens.

“You need to get some Mike’s hard lemonade,” your daughter says when you’re at the grocery store, because you once told her that you had one at your friend Diane’s house, and you liked it, and in your daughter’s world, if you do anything you like once, you must do it many many times, because that is wonderful.

People look at you funny when she points to the Mike’s, like you’re an alcoholic raising one, but you think screw them, and you buy the Mike’s and it stays in the fridge for three months before you throw it out, but it makes your daughter happy.

You would do anything to make your daughter happy.  To make her whole, and to promise her that she will never have to go to the hospital again, but despite all the effort and practice, you’re just not that good at lying.

When you bring her to the hospital for the eighteenth time, or maybe it’s the twentieth, and she says, “I want roses, like a princess.  Red ones,” you make sure she has them, even though it destroys your budget for the month.  Raising your daughter makes it impossible to also hold a steady job, so you freelance, despite the fact that you’re not really cut out for writing about things normal people are interested in.

And you find out, interestingly enough, that there are so many not-normal people in the world that you don’t ever have to write for the normal ones if you don’t want to.  Which is a huge relief.  It’s a club and the password requires an appreciation for dark humor, and you have to have been through gut-wrenching grief to get here, and you look at the people who don’t know, and you realize, for the first time, that you don’t want to be them: innocent, unknowing, unformed, unrealized, their lives entirely unlived.

You bring your daughter home from the hospital, and she says, “Next time I want carnations,” and you know there will be a next time, and it makes your heart hurt.

Still, you are so not ready when the next time comes.  It’s a mugger, and you’re not even walking after dark.

You’re at the hospital for another MRI, routine. You know all the rules by now, and the names of the nurses, and the questions they’re going to ask.  And you know the MRI is going to take one hour, ninety minutes tops, because it always has.

And you know from long experience that when something deviates from the norm, the news will not be good.  In the world you don’t get to live in, people get good news all the time, but not in the universe that made your daughter.

Three hours later, the nurse comes in and makes some remark about it taking a while to get the pictures, and you know she’s lying but you don’t push, because she’s not allowed to say, and she won’t.

So even though no one tells you that you should, you wait by the phone the next day, and the neurologist calls just like you knew he would, and he says, “There’s been an unexpected finding,” and even though you knew it would happen, it catches you in the gut and you sit down, hard, and you think I can’t stand it.

The sky has fallen down many times in your daughter’s short life, the sky with all the stars in it, and you have picked up the pieces more times than you can remember, and you have climbed the ladder and put them back in place, where you think they should go, and you get things in backwards and out of sequence, but you do the best you can, and you climb down off the ladder, and you’re at peace with your work.  You wish it could be better, but there’s only one of you, and the sky is so vast, it takes a while to put it back together again, and you did the best you could.

And you just went through all that work, and here is the goddamned sky scattered all over the carpet again. 

The neurologist describes the new problem, like having a massively deformed brain is not enough for one child to bear.  You process what he is saying: there’s a hole in your daughter’s spinal cord.  He calls it a channel, and he gives the medical name for it, so you can look it up on the computer and give yourself a heart attack, and then he says he would like a neurosurgeon to consult, and you say, sure, because what are you going to say?  I can’t do this anymore?

So you tell your daughter she has a hole in her spine, and she takes the news gracefully, the way she has taken everything you’ve ever told her about herself, you have a massively deformed brain, you have seizure disorder, there is no cure for your disease, and oh yes, your all-time favorite surgeons took out the left side of your brain when you were nine months old.  

There is one secret thing you never tell her.  You never tell her how afraid you are that this is the last time.  The last birthday.  The last kiss good night.  The last time you will ever sing the Mockingbird Song to her, the way you have done every night for thirteen years. 

You have never done anything for thirteen years before.

The neurosurgeon is a pleasant man, which is a change from the usual run of neurosurgeons, and he describes what sounds to you like a horrifyingly high-risk surgical procedure, and which he calls an intervention that he has performed before.  You don’t push him with questions like, How many times? Because you don’t want to know.  Because it will break your heart or terrify you, and you don’t have the stamina for that.  Not today.

He turns to the computer, calling up the MRI, and you focus on his hands, and you decide that he has competent hands, artist’s hands, and it’s a good thing, too, because you are trusting your daughter to those hands.

He wants you to look at the image on the computer, but the image makes you want to throw up, you don’t want to look at it, but the doctors always make you look.

And you see the place where they took out the left side of her brain and threw it away, and he shows you the hole in her spinal cord that goes on and on and on, tracing it the length of her spine, and you can’t stand it anymore, not even to be polite, so you stare at the floor, and you notice your sandal is scuffed and you wish you wish wish wish he hadn’t made you look, and you hope you can hold it together until he leaves, and you can bolt to the nearest bathroom and be sick.

He smiles kindly and schedules surgery for August 10^th, which is too soon, much too soon because you can’t even conceive of what he is going to do, and it is going to take you a long time to wrap your mind around it, and it’s also too far away, much too far away, because you would like to sleep until it’s over, and there’s just no possibility that you can get away with staying in bed that long.

You look up at your daughter, and you see her face is stark white, and you know she is scared out of her mind, she has understood everything that has taken place here and it was so much easier when she was little, and she didn’t, and she would just smile at her hands and coo.

Her father is barking questions at the surgeon, agitated and pacing, and the surgeon answers him patiently, prefacing each response with the phrase, “That’s a good question,” along with a nod and a smile, like your ex-husband is a good student, while you sit there, a lump, bovine, you couldn’t form a question if it would save you from a firing squad.

You are trying to think of what to say to your daughter, and all you can think is I don’t want to lose you, baby girl, I don’t want to lose you I don’t want to lose you lose you lose you.

Which doesn’t seem particularly helpful.  So you shake hands with the doctor, and before the nurse starts asking all the questions on the H&P, you tell your daughter that the surgeon is going to try to keep the hole in her spine from getting worse, and that means some surgery, and maybe five days in the hospital.  And you must do a good job of not communicating your deep dread and fear, because she says, “Okay.  Will people bring me presents?”

Yes, you say.  Yes.  It will be required.  You hug her, and she says, “You have your stars on.”

Those are your earrings, and the very first time you wore them, your daughter exclaimed with delight, “Now we can wish upon a star every day!  Twice!”

And so you wish upon the stars, right there in the examining room, that you will live happily ever after, and have good work to do, the wishes you always wish, and then you’re ready to face the nurse, and to answer the questions she has, knowing how gut-wrenching it is to go over your daughter’s medical history with someone who doesn’t know her, knowing that your daughter will pepper you with as many questions as the nurse will.

At home, you try not to think about August 10^th.  You know it will come too soon, and not soon enough.  You make a note to buy more crossword puzzles, because that is all you can do when your daughter is undergoing an intervention the surgeon has performed before, and you didn’t have the courage to ask him how many times.

At dusk, your daughter says, “Time for fireflies!”

And you know the drill, that you can’t watch the fireflies without a snack, so you ask if she would like ice cream or a cookie, and she says, “I would like ice cream and a cookie, and some Diet Coke, and I will want my princess figures, and I will get the door for you,” and you don’t even try to argue about the ice cream and the cookie, or suggest that milk would be better than Diet Coke. What if this is the last time you look at the fireflies together?  You don’t want to be the jackass who screws it up.

She gets the door, and you bring the cookies and the ice cream, and go back for the Diet Coke and the princess figures, and she settles onto the patio chair with a sigh of contentment.  And you look up at the stars in the sky, and you wish you knew something about astronomy, because then you could tell your daughter which one was the evening star, and you would tell her that that is the star to wish upon.  But you don’t know; they all look alike to you.  And maybe it’s better that the stars you wish upon are the ones you can see whenever you want to, wherever you are, even if it’s the intensive care unit on the fifth floor of the children’s hospital.

“I see a firefly!” she shouts.  “The first one tonight!  How many do you think there will be?”  Before you can answer, she says, “Where do fireflies live during the day?”

You admit you don’t know, and she says, “We will look it up on the computer tomorrow.” 

And you do, and you find out that fireflies are rapacious predators, but nothing shocks you anymore, not even that.  You don’t tell your daughter this finding.  And the calendar moves one day closer to August 10^th, and the number of times you go into the bathroom to throw up increases by a factor of two.

A long time ago you stopped raging at the universe for doing this to your daughter, and years before she was born, you stopped believing in a benevolent god, but right now you would like to hurl some curses at a supremely powerful being, to have the satisfaction of getting an answer back.  You would take on Satan and ten men, but no one asks you do to that.  No one has ever asked you to do that. 

They asked you to do this instead, this infinitely harder thing.  And you think about that study, and you laugh out loud again, and your daughter asks why you are laughing, and you say, “Sometimes, girlfriend, I can’t believe how badly people miss the point.”

“What does that mean?”

“It means I don’t care that I’ve never seen Paris.”

She’s accustomed to your moods, so she nods, and she turns on the radio. “It’s your favorite song!” she says.  “Isn’t that lucky?”

And you hug her hard, but she’s used to that, too, and she lets you, and even lets you sing along without complaining (“this time only, mom!”), and you are lucky, probably the luckiest woman living, and happier than you have ever been, but not in any way an academic would understand, or even conceive.  Your joy is bigger than the universe and contains all the sorrow of a lifetime, and has nothing whatsoever to do with feeling sufficiently rewarded for your work.

I will be the first to admit that beating your head against a wall is way more fun than querying agents and editors, and that the more rejections you get, the harder it can be to feel like doing it all over again.

I also know that making creativity your work — the thing that pays the bills — is a good way to want to shovel ditches for a living.

Basically, we have two connected questions: “How can I succeed in the commercial arena of publishing?” and “How can I, at the same time, renew and feed my creative energies?”

You really do have to separate the act of creation from the act of publishing.  The act of creation is something to be nurtured and protected, even on the days when you don’t feel like it.  The act of publishing is a business transaction, period.  They are two very different creatures, although of course we’re bound to conflate them, being human and wanting to see our hard work rewarded.

Protecting your creativity — renewing it, feeding it, keeping it from shutting down when you get five more rejection letters this week — requires a couple of important habits:

1.  Protect the time.  Even if you’re just drawing doodles on a sketchpad, keep your creative time free from other encumbrances.  My first two hours of every day are for The Work, even though sometimes they actually consist of talking to friends at the coffee shop. 

2.  Remember that sheer financial terror impedes creativity.  Putting the entire burden of your financial health on the capricious whims of the publishing industry requires nerves of steel.  You can spend more time worrying than working.  Not worth it.  I just wrote a blog post for the Renegade Writer on the importance of diversifying your client base as a freelancer; this is just as important for people working on fiction or other creative endeavors.  Have different work to serve different purposes.  It’s not selling out: you’re buying the time to do The Work.

3. The Work is sufficient in and of itself.  Yes, it’s nice to be recognized for your talent, but it’s not required.  There are ways to share your work beyond traditional publishing, if it comes to that.

4.  Keep more than one project going.  Have new work you’re conceptualizing while you edit the old work and send out the older.  Keep your focus on your work and not on the publishing business.

To the in some ways more difficult question of succeeding in commercial publishing:

1. Create a network.  The hardest thing in writing is feeling like you’re talking to yourself.  Have other writers, readers, colleagues, who can give feedback and offer resources.

2. Learn to sell your book.  It’s easier to write a blurb about someone else’s book.  So either pretend you’re writing your query about someone else’s book or trade with a friend: write a query for someone else’s book and have them write one for yours.  See if that helps you nail your query.

3. Don’t invest everything in one project.  Especially these days.  Times are tough in publishing. You can love your book but you also need to Let. It. Go.  Maybe it will be published, maybe it won’t.  Like a child, you do your best by it but beyond that, you don’t have a lot of say in how it turns out. Get to work on the next book.

4. Invest in getting better.  Yes, this book is good.  Focus on how the next one is going to be better.  Read, attend conferences, join writers’ groups.  Immerse yourself in understanding the craft and the publishing process.  Experiment.  Fail.  Fail a lot.  Learn something.  Fail some more.  Write the book no one can turn down (then sell the secret for one million dollars).  That’ll keep you too busy to focus on the inadequacies of the agents and editors who are rejecting your book.

5.  Recognize what you can control and what you can’t.  Writing the best book you can?  Completely under your control.  Convincing other people it’s the cat’s meow?  Not so much.

Oh!  I almost forgot.  Starting today, my “Freelance Editing 101″ class through the Rengade Writers.  More here.

I receive questions like this every now and then, and I always struggle with how to answer them.  Realistically, it’s not possible to make a living writing short stories and poetry.  That’s the short answer.  Even so, you can still see those acts of creativity as worthwhile.  You can still see them published.   

But if you want to make it big – or even just make a living from your writing – then you need to do something a lot of creative people don’t like doing, and that’s think about your market.  Who is going to read your work and pay for the privilege?

How many short stories collections have you purchased in the last year?  The last ten years?  How many poetry chapbooks?  As compared to how many novels, nonfiction books, magazines?  I can tell you I haven’t read a collection of short stories since my dear friend Mary O’Connell published Living with Saints in 2001.  But I have easily bought eight hundred novels since then (hey, I read a lot).  I haven’t purchased a poetry chapbook since I was in graduate school, longer ago than we need to get into here, but I read several hours of nonfiction (books, blogs, websites) every day.

That is to say, I’m a lot like everyone else in the universe (okay, not everyone else in the universe reads *quite* as much as I do).  I read novels and I read practical nonfiction. 

When was the last time you opened a women’s magazine (for example) and read a short story?  Never?  They used to publish them.  I remember reading each issue’s short story in Redbook when I was a kid.  But Redbook has been dead a long time.  So where do you see short stories published now?  In literary magazines and their associated websites, which operate on shoestring budgets and are put out by volunteer (or really badly paid) editors.

There’s just not a lot of opportunity for paying the bills there.  But if you open that same women’s magazine and look at what is being published, you’ll see everything from short round-ups to in-depth reported pieces to personal essays.

If you write those, or are willing to write them, then you have a shot at making some money with your words and turning your talent into a career.

I’m not saying you should.  I’m just saying you could.

If you want to focus on short stories and poetry, then your best bet is to get a teaching position.  So, invest your energy into getting published in those literary magazines and earning your MFA, then start hunting down a sinecure at a college or university.  Of course, these are somewhat harder to find than dragon’s tears, but it’s possible you’ll be able to land one of these positions with the right publications and the right credentials.  But being a teacher and writing on the side isn’t a lot different from being a fill-in-the-blank and writing on the side, and you could save yourself a lot of frustration and annoyance (academia is not for the faint of heart) by sticking with your current fill-in-the-blank job and writing on the side.

Here’s the thing, which I can’t emphasize strongly enough: making a living from your writing isn’t all it’s cracked up to be.  You don’t get to spend your time writing only what you want to write.  You have to care about the market.  You have to care about being a business.  You have to care about sales and platform and building an audience.  You have to care about a lot of things that, frankly, most creative people don’t want to care about. 

Still want to give it a try?  Then you need to get your stuff out there in the world.  Query publishers about your collection of poetry.  Send your short stories off to those literary magazines.  But you have to go beyond that.  Look at what is being published in markets that pay.  If they’re not publishing short stories, maybe you can use the craft you learned writing short stories to write essays, which are more marketable.  Maybe you can write about writing poetry, or looking at the world through a poet’s eyes.  Open up and see what the possibilities are, instead of thinking there’s only one way to be successful as a writer, or only one way you want to make a living as a writer.

“I’m an unpublished author getting ready to submit my book.  I’m writing a book in a genre I’m not sure how to define.  Can you give me some advice on agents or publishers to submit it to?”

This is a common question that I get asked many times each week in one form or another. 

Here’s what I always recommend.  First, I would start by approaching agents.  Major publishers do not look at unagented material, so the only way you’re going to get published by Simon & Schuster or HarperCollins is by having an agent. 

I have been published by every type of press in the universe – micro, small, midsize, ginormous – and I have to say that I’ve sold way more books and made a lot more money being published by midsize and ginormous publishers than I ever made working with small and micro publishers.  This is not to say I’m not grateful for the small publishers who publish some of my books.  For certain niche-oriented projects, they are the very best choice.  And I’m not saying the only reason to publish something is to make lots of money.  But if your options are “big publisher with excellent distribution and a way to get review copies into people’s hands” and “small publisher who can sometimes get a book into a distributor’s catalog,” you can see where I’m going with this.

So.  Start with agents.  If agents don’t bite, and you’re sure it’s because they simply can’t see the merit of your work, and not because your work needs work (so to speak), then you can certainly approach smaller publishers on your own.  You would query them the same way you would an agent (with a brief letter explaining what your book’s about, its genre and word length, and possibly a few sentences about yourself, if that has any bearing on the book – you’re a pastry chef, and the book is about pastry chefs, or you have won the Pulitzer prize, or you have had several other novels published by publishers people have heard of.)

Where to find out about agents: Agent Query is a good place to start; so is Preditors & Editors.  You will want to vet potential agents.  A good place to check out other writers’ experience is on the forums at www.absolutewrite.com, especially the Backgrounds and Bewares forum.

I do have an e-book for sale that goes over the basics of book publishing, including information on finding agents.

When you specify your book’s genre, don’t say, “It’s part-memoir, part-paranormal, part-contemporary romance with a little mystery thrown in.”  No one can sell that.  No one reads that genre.  Which is not to say no one would read a part-memoir, part-paranormal, part-contemporary romance with a little mystery thrown in. They just wouldn’t call it that, so neither should you.  Ask yourself, where would this book be shelved in the bookstore?  If you don’t know the answer, then just call it a novel.  Send your query about it to agents who represent novels.  Let them worry about what to call it.