Ben, fiddling with a straw, leftover from a *gasp!* sugary soda, as we walk around Target.

Horrible, Awful Mother, “Hey Ben, here’s a garbage can. Please throw that away.”

Ben scowls in her direction and makes no move toward the garbage can.

Aunt Becky: “Ben, now. I don’t need any more weird garbage-y crap to clean up around the house.”

Ben, if looks could kill, she’d be dead and buried.

Dave, “Benjamin MAXWELL, NOW.”

Becky snickers into her palm at the usage of the Middle Name Treatment.

Ben flounces dramatically to the garbage can and makes a huge production of throwing out the straw. Then, he pivots to face his parents.

“FINE, I’ll throw it AWAY” he stamps his feet. “Since you HATE MOTHER EARTH.”

Apparently, our son was brainwashed.

——————–

“Dat a Pumpkin, Mama?”

“Right, Alex, that’s a pumpkin.”

“Dat’s notta pumpkin. Dat’s a GOURD.”

“Okay, it’s a gourd.”

“It’s not a gourd. It’s a pumpkin.”

*headdesk*

For the record: it was a jack-o-lantern.

——————–

(Cacophony of dogs barking after someone knocks on the door)

“Who was at the door?” I barely looked up from my computer to ask Dave. My ass was tired from a strenuous day of sitting on it.

“Some high school kid selling magazines.”

Knowing my husband is a sucker for anyone selling anything, I sighed, wondering if he’d renewed our (never read) subscription to Golf Digest.

“What did you get us?”

“Nothing.”

Shocked, I was silent for a second.

“Wait, did the kid offer a subscription Playboy? Because I TOTALLY would have subscribed to that.”

“BECKY.”

————————

And then incongruently there is this:

Which leaves me alternately so full of joy and so full of survivor’s guilt that I can barely talk about it. I know it doesn’t make sense, survivors guilt makes no sense, but I don’t understand any of this.

How did we dodge this bullet? I don’t understand any of it. I just don’t understand.

21% with her type of encephalocele are born alive.

55% of those born alive are expected to survive.

75% of those who survive have some degree of mental defect.

She is a miracle. My sweet daughter, a miracle.

I sit here with tears streaming down my face, crying because she made it and crying because I know so many didn’t and crying because I am so grateful that she is so, so blessed to have so many people who have prayed for her and love her.

Thank you. Every day, I am grateful for you. All of you.

—————–

Now if you’ll excuse me, I have something in my eye that requires my immediate attention.

My daughter is teething, I think, but I’m not quite sure. I mean, I THINK she is, but I would have sworn on a stack of Bibles that Alex was, too. Turns out that, no, Alex was merely unpleasant, and popped his teeth after his first birthday without pomp or circumstance. He went from zero to Jaws-like in the matter of a couple of days.

Ben, like Alex, was so full of The Screaming that it was impossible to ascertain if he was teething, or just displeased by being born (the NERVE!). He too, just popped out a set of chompers in a few days, looking not only like he was wearing a toupee, but also had a set of dentures.

For the last couple of weeks, though, my daughter has been damn near impossible to handle. I find myself on edge almost constantly, because the slightest rustling of the wind through my orchids, or the air conditioner clicking on will catapult her from sleep to wake. Once she’s awake, there’s almost no getting her back down until her next scheduled nap time.

With two other children, two dogs, two cats, and a husband who is not home, I’m sort of at my wit’s end (one may argue that I never had wits about me anyway, an accusation that is neither here nor there.).

The phone dares to ring and I verbally rip the face off whomever is unfortunate enough to call.

The neighbor comes by to see if I need my lawn mowed, and I cry, because the commotion woke Amelia up, and I cannot fathom another swaddle, bounce, pat, binkie, bottle, binkie, thrashing, sweaty, restraining I-love-you-baby-but-fucking-go-to-sleep session.

Alex operates on top volume whenever he is awake and my dogs like nothing more than to bark at innocent caterpillars that crawl in our front yard, and I. am. spent. Exhausted.

Sometimes, I cry into Amelia’s head, her tears mingling with mine, as we’re both incredibly frustrated by the situation: she cannot settle and there is nothing either of us can do about it. Other times, I just grind my teeth, giving me such migraines that if I had the luxury, I’d be incapacitated, in bed with my eyes closed.

We’re stuck here in this holding pattern.

This, I think, this is the real ass-kicker about having had a child whose life was, at one time, in flux: how can you possibly be upset with someone who you worried so very much about losing? I imagine this happens to many parents-of-children-who-survive-a-massive-trauma.

Life isn’t fair, you know this as you weep over your child in the NICU, the monitors alarming, the staff flitting from one emergency to another, because if it were, no children would be sick. Ever.

And somehow, after all that anxious uncertainty, all that worrying, teeth-gnashing and terror, your child was the one who made it out alive. His neighbor in the hospital may not have been so lucky and you know it. You’re blessed to even have this child. It’s like chewing on a piece of aluminum wrapped candy: sweet and shockingly painful at times.

Because you’re human, too.

I know how lucky I am that Amelia made it and is normal. I know that most children with her diagnosis don’t come home alive and breathing. I’ve watched my friends mourn their lost children and cried with them. Because the world–it is most certainly not fair.

But she–my daughter–she is a child, a human child. And if I know anything about children, it’s that they can make you so crazy that you’re nearly sane again. I’ve been through two of the toughest children already, the sort who screamed, and cried, and nearly (in the case of Alex) drove me to the brink, and I know that this is what kids do.

She’s not like other kids, and yet she is, and it’s this that is making my head spin.

I feel guilt, such massive crushing guilt, whenever I am at the end of my rope, like today. Today she slept for maybe an hour total, which is far, far less than she needs. And yet there was nothing, not one single ever-loving thing that I could do about it.

There’s that niggling part of me in there, too, the part that wonders if maybe her head is hurting her. I mean, she was born with a malformed skull, she has an implant in her head to correct it, and her head is growing. I know this because her scar is stretching, nearly taking up most of the back of her head now.

Or maybe it’s a new symptom of something more sinister. No one was able to tell us much of anything about her diagnosis besides it’s name (encephalocele) and what it was (neural tube defect). We’re not-so-casually waiting to see what happens next because no one knows precisely how this will affect her.

She could be normal, she could be profoundly retarded, or somewhere in the middle. Her issues with sleeping deeply may resolve themselves in a couple of years, like Alex’s did, or maybe she’ll be a Lifetime Member of The Unisom Club like I am.

On days like today, when I worry that the nape of her neck is becoming disproportionally large by comparison, and that the top of her head has begun to point in a cone, I can’t seem to talk myself out of it. Telling someone who is genuinely afraid of something–logical or no–to not worry is like asking them to hold their breath for a year. Or a week.

Im-freaking-possible.

I don’t sit around all day, every day crippled by grief and worry, and I try to live in the moment and not the might-be’s or the may-have-been’s because I know that they go nowhere.

And yet, this is who I am now, someone who hyperventilates in hospital parking lots and worries that every little stupid thing is the mark of something more sinister.

So I wait, and I watch, and I worry and I hope that some day we will all look back on these days and laugh.

And I hope.

I hope.

What follows is not a birth story. What follows is what came after that.

And my warning to you, o! Internet, my Internet is this: what follows will probably be kind of boring. It may be self-indulgent and whiny. At times it may make no sense to you why I felt a certain way or why I still feel this way. What follows is probably never going to win me any blog awards or any new friends and I am okay with this.

Like anything else I’ve ever written–even the most banal of blog posts–I am writing it because I can’t not.

It must be told.

————–

My pregnancy with Amelia was not exactly a planned one. It wasn’t unplanned though, it just was. I hadn’t been back on birth control since Alex was born in March of 2007 and by May of 2008 I was pregnant for the third month in a row. The previous months had been marked by the hormonal roller coaster of back-to-back miscarriages, so when that pink line popped up for the third month in a row, it was almost by rote that I called Dave at work, told him the news and warned him not to get too excited.

Instead of immediately miscarrying, the pregnancy seemed to stick. Until about Week 6, when I began to spot. Having never seen a drop of blood with either of the boys, I immediately assumed the worst and prepared for the next miscarriage by calling the OB for another shot of Rho-gam.

(let me whine pointlessly for a moment and say this: I am pretty certain that they inject Rho-gam with a straw from McDonald’s. I have had 3 babies–one sans working epidural–and I swear, that stupid shot is always the worst part)

My heart was pretty heavy as we made our way to the OB’s the following morning and to add insult to injury, I was still nauseous as hell and bawling like an annoying small child. I’m sure the entire waiting room appreciated my sniffling and hiccuping. Alas, it was my turn to go back, and after giving about 4 gallons of blood (rough estimate) and determining that the bleeding had stopped and my cervix was tightly shut, I was sent for an ultrasound at another office.

The minute the tech inserted the camera up my pooter–after insisting The Daver stay in the waiting room, which, hello awkward–I saw it. She cast her pixilated, gummy bear heart on me and I was in love. I breathed a huge sigh of relief, went home and gorged on some Flavor-Ice. The following morning, the OB grimly called to inform me that my progesterone was somewhere in the single digits. This is, apparently, very bad.

So for the next twelve weeks, I was instructed to unceremoniously shove bullet shaped suppositories up the old lady bits twice a day, which trust me, as they melt, is like sitting in a pile of waxy spooge all day long. What I’m trying to say is that it was very, very pleasant.

But whatever, a little leaky vagina I could handle. The spotting continued on and off until I realized that perhaps I didn’t need to scratch the surface of my poor cervix with the suppository, and then it stopped for good. Everything was calm. Well, as calm as living with a monkey wearing a toddler suit can be, while your spouse is off fighting financial battles all day (and night) long during a huge crash in the markets.

(Lengthy boring aside #1: did I mention that The Daver is in finance? And that he had just accepted a position to become a manager when I fell knocked-up? Because yeah. The timing was awesome.)

(Lengthy boring aside #2: I feel I also must add here to give some additional information to those who haven’t been anxiously reading and rereading my (boring) archives and committing every one of my trite posts to memory. I don’t do pregnancy well. I get awful, crippling anxiety and mind-numbing depression while I cook my babies. It’s called prepartum depression. It’s very serious and it’s very real.)

But life trucked on for us all, the markets slowly sinking and Nat (my eldest’s biological father) coming by to predict the end of days every week or two. He’d take some time off in between to chastise my choice of, well, anything: car, house, lawnmower, you name it, he’d judge it loudly. Is it any wonder my trolls don’t bug me much?)

Anyhow. Moving along.

My 18 week ultrasound revealed not much at all. Baby looked like it might maybe kind of have a vagina of her own, but I was chastised by pretty much the entire office staff for “coming in too early.” I had a repeat US at 22 weeks which revealed that my daughter indeed had a vagina, a perfect heart and a perfect brain.

Obviously. She is my daughter after all.

Internet, I am telling you that when the tech told me that I was having a daughter of my own, I shed real tears. Despite my rocky relationship with my mother, I’d wanted a daughter so badly that I could taste it, but I just knew I was destined to be a mother of boys. Forever The Queen of the Sausages. I never thought I could possibly be lucky enough to have a daughter.

And yet, there she was, a blobby mess that I could ascertain very little from, although I was quickly pointed out the 3 lines (a.k.a. “the cheeseburger”) which signified that she was without penis. I couldn’t have been happier.

My very own daughter.

I was lucky enough to have a daughter.

Amelia.

My daughter.

Words cannot possibly describe the joy I still feel when I say that.

I have a daughter.

Part I.

The rest of my pregnancy went as smoothly as a pregnancy can for me. I reveled in my daughter rolling this way and that, I shopped for any number of teeny frilly dresses–while trying desperately to avoid the hootchie momma stuff–and began to stimulate the economy one pink thing at a time. I was as happy as I can be during pregnancy, my appointments showed me gaining my standard metric fuck-ton of weight.

Somewhere around week 37, I noticed after we’d come home from a lovely day of shopping–sans small children (this is what made it extra special)–that my entire lower half had ballooned into Michelin Man territory. My upper-half remained as fat as it was beforehand, but my lower half was bordering on ridiculous. It was Sunday and I was marginally alarmed by the sudden gain of at least 20 lbs, so I called my OB. They were shockingly unconcerned.

I looked like I was wearing exactly one half of a fat suit.

The following day, I noticed that the swelling was now bordering on Stay-Puft marshmallow status (replete with pasty whiteness. This was January in the Midwest), and the OB was now concerned. Off to the hospital, we trudged, for a NST and unnamed other tests.

What followed was a brilliant comedy of errors which involved busy doctors, dropping platelets, consults with specialists, living in a broom closet for three days and eventually an amniocentesis. I’m saving you from the most tedious story ever, but let me tell you that this was fucking Providence if I’ve seen it.

After our awful experience there we vowed to have our daughter at the OTHER local hospital. Where we’d had Alex, but not where we’d planned to expel Amelia. An excellent move we never could have expected.

Providence, Serendipity (wait, wasn’t that some shit-balls movie?), Fate, whatever you call it had a hand in things right there.

A week or so after I ripped the IV tubing from my arm and waddled indignantly through the L & D lobby on my way home, I had to go back to the doctor. The swelling–even in January–was so bad that I could only fit into this absurdly large pair of Daver’s slippers I’d been meaning to toss. I’d been meaning to toss them, you see Internet, because they reeked. They were also crusty and awful, but it’s all I could stuff my poor feet into, so off we went.

Two days later, on Wednesday January 28, my daughter was scheduled to make her debut with the aide of some a long hook and an IV drip of Pitocin. All of my babies have been induced, and while I’d been sort of looking forward to going into labor naturally, with the other two kids at home and the fact that I now felt like death AND was spilling some proteins, I figured safety for both of us was paramount. I could always watch a romantic comedy if I wanted to relive what “going into labor” was like.

You know they never lie in the movies, right? Or on The Internet? EVERYTHING on The Internet is true.

We had one full day to prepare all that we needed to bring another baby home, because somehow when you’ve reached number three and have run out of bedrooms with which to put said child, nursery preparation is pretty minimal. Besides, Alex had just grown out of most of what I really needed and so it wasn’t a stretch to pull it all back out.

My daughter would sleep in our bedroom with us until the boys could move in together, so there was no shopping for coordinated basket covers for the nursery, nor were we trying to match the knobs from the dresser we didn’t have to the light switch cover. It was sort of anti-climactic, but after having done it twice before, I was pretty pleased to just wash the scads of tiny pink clothes.

(Pointless aside #1: I keep mixing up my underwear with Amelia’s clothes in the wash. That feels kind of wrong, although not because I dress her in leather, lace crotchless panties, but because my own undies are–for the moment–large, pink and could probably double as a sail for a boat in a pinch)

Wednesday January 28th, we awoke at some ungodly hour (like 5:00 AM! Which is a time I should never, ever be awake because I am 100% allergic to mornings) and it was still dark out. Inky dark. And snowing. I remember waddling to the car after blowing kisses sadly to Alex’s door–he was still asleep–and finding the thick flakes of snow swirling about to be a Good Omen. I’d heard somewhere that rain on the day of something important was supposedly a good thing, and it being nearly February in Chicago, rain was more apt to be snow.

We drove to the hospital in silence just as we had before. While having #3 isn’t nearly as scary as having #1 or even #2, I’m not sure what pleasant conversation is when you’re both acutely aware that once you leave the hospital, nothing is ever going to be the same again. In the face of this, what is there to say?

Really.

Each of us were lost in our thoughts as we stopped for gas–and breakfast for Daver as I was too afraid I’d never eat at Dunkin’ Donuts should I see it coming back out a little later in a slightly *ahem* different form–the snow and the blackness and the wind seemed to make it a magical, magical morning. I can’t describe it well enough to do it justice. The radio was, for once, playing perfect music, the big fat flakes would make a satisfying splat against the windows, and in the dark then, it looked as though we were flying through that old screen saver.

Certainly if I know what that screen saver is, you must too. (no, not the flying toaster one).

After managing to hit not one but two trains, my stomach clenching and unclenching in knots as I tried to remember just what labor feels like and how scared I should be about the pain. I’m not hugely averse to pain (don’t get me wrong, it doesn’t turn me on or anything) (unless maybe it’s to someone I hate) (and that’s just a maybe) but even within 20 months, I had completely forgotten how it felt.

I barely remember pulling up the valet and handing off the keys as I was too busy peeling myself off the car seat and waddling into the hospital. We were checked into a room immediately and met one of the most cheerful nurses on the planet, which was a huge bonus as Dave and I were both terrified. And when we are both nervous or scared, our initial reaction is to open our mouths and talk. We flappity-flap-flap-jaw about nothing, anything, everything.

I guess it’s better than crapping your pants or explosively farting. That would make other people MUCH more uncomfortable, because how can you ignore THAT white elephant?

Soon I was instructed to change into a gown and nothing else as the nurse clucked over my poor legs which burned and ached from the addition of all those extra pounds of water. The tissues within screamed and cried as I tried to pull off my socks in vain. Dave eventually had to pull them off for me.

I settled into the bed, ate a couple crackers and then we were off. The IV ran slowly, dripping saline into that chamber, the line patent and waiting for the doctor to order the bags of Pitocin from the pharmacy. I considered Twittering, maybe I actually did, just to do something that felt normal and took my mind off of what was about to happen.

Dave flitted about the room, nervous as a bird, putting away this or that, arranging and rearranging the various things we’d brought while I lay there in bed, nervously watching the minutes tick past one after an ever-loving other. The doctor ambled in, broke my bag of waters–which, I have to say, is a REALLY discomfiting feeling–and pronounced it beautiful and clear. No meconium. The baby wasn’t in distress. The pit was added to the IV and we were off!

I had hoped to actually move about the room before the contractions got too terrible so that I could urge the baby out and use gravity on my side, rather than lay flat on one side of my back. But Amelia wasn’t really ready to be hatched, her head still pretty high in my body and not engaged into my pelvis. The risk of cord prolapse was great enough (broken bag of waters + floating baby) that I opted to lay there, willing my daughter out with my will of steel.

Labor? Hurts. It hurts a lot. I lasted a couple of hours, breathing through them, tears coursing down my face, although I wasn’t actually crying them. They were just plopping out of my eyes, and I only noticed because Dave occasionally wiped them away. I’d planned to Twitter, if for no other reason than I wanted to feel like I was connected to something outside of that room, but I was petrified. Even through the pain, I was so, so scared.

Maybe 4 hours into my labor, I got my epidural. It’s just like any other one I’ve gotten (I got a bonus 3! different! ones! with Ben, so I can handle it.), feels weird, not entirely pleasant, like your body knows something is going where it’s not supposed to, and then, WHOMP! Your legs are gone. Lifeless and tingly at the same time. It’s not a pleasant feeling by any means.

For an hour or so, I laid there, trying to watch TV but completely unable to focus on what was playing, so afraid. Just overcome with fear. I’m not one to talk about “my feelings” very often, and I don’t even know that Dave knew that I was so full of fear and dread that I could barely breathe.

And wait, what was THAT? It was…a contraction? Okay, yeah, the monitor says I’m having one OUCH! *pant, pant, pant* WEIRD. And wait, ANOTHER ONE? *pant, pant, pant* okay, wait, I thought I had an epidural.

I did have an epidural, I knew, because my legs were like two life-sized facsimiles of legs, as dead as tree-stumps, and yet still there, warm and heavy. I couldn’t shift easily from side to side as my hips were similarly numb, but that was it. It hadn’t taken past my hips.

I know I always like to use the “make God laugh; tell him your plans” quote when I talk about kids, especially when talking to parents-to-be, not because I’m being unkind in any way (I know. A shock), but because for all the planning, all the carefully executed plans, things just never go that way. I don’t mean to sound pessimistic or unnecessarily cruel, just honest.

I’d planned for as many narcotics as possible as soon as possible and here I was, 5 cm dilated and 100% effaced, half numb, a sort of centaur of pain. So be it. I could have had them replace the epidural, but I just didn’t care. I could handle it. I’d done it before.

(Pointless rambly aside: when laboring with Ben, the doctor turned off the epidural completely when I had to push. It was like going from 0 to 11 in a couple minutes. He was a nice man, eh?)

The transition from 5 cm to 10 took about 15 minutes, and after demonstrating my excellent ability to push for the nurse, she turned white and called the doctor immediately. Oh yeah, I’m a rock-tastic pusher.

I staved off the urge to push, and the fear I’d been feeling before amplified just like I was an ant in the sun who had wandered into the path of a large magnifying glass. I was petrified to the core, my cells screaming in fear. I cried and I cried and I cried like a little bitch to poor The Daver, “I’m so scared. I’m so scared. What if there’s something wrong with the baby? I’m so scared.”

Over and over and over, like an awful broken record. I couldn’t stop myself. Couldn’t be rational. I’d say it was the effects of being in transitional labor (the last time, I’d tried to order Dave to go home as he’d spent my labor on the couch in the room, sleeping off a migraine and I.was.pissed.) and maybe that’s all it was, but I was a wreck going into this phase of labor.

The doctor came scurrying in, gowned up quickly, and raised the bed up so far off the ground I felt like a circus performer with my crotch as the main attraction in the spotlight. Normally, I’d have cracked a joke, but I was shaking with fear, cowering and weeping openly.

On the doctor’s orders, I began to push. I knew the baby was positioned badly–for the life of me I cannot recall how–and as I pushed, the doctor wrangled my poor crotch everywhichway. I was thankful the epidural was on as I saw my hips shimmying and shaking with each push. Ben had been a forceps baby, Alex slid out with a couple pushes, and it looked like my last was as stuck as my first.

I didn’t have a lot of time to think about it, as they had me pushing every time I caught a breath. I always hear those ladies on A Baby Story screaming as they give birth, and I don’t get it. I’ve never screamed. And trust me, I’m a loud-ass bitch, so I’d imagine that if anyone would scream, it’d be me.

I opened my eyes from squinching them tightly shut through my pushing and what I saw alarmed me, my normally pasty husband was ashen, the doctor looked concerned and the nurse looked alarmed. Not exactly encouraging.

“Becky,” my doctor said, her voice squeaking with either effort or emotion, “there’s something wrong with your baby’s head.”

I was already hysterical by the time the doctor told me that my daughter had something wrong with her head, and as she instructed the nurse to call neonatology stat, just like that, my daughter flopped her way into the world at 4:28 PM on Wednesday January 28, 2009.

Furiously.

“Is she okay, is she alive, is she okay, please tell me she’s okay, oh my god, oh my god, is she okay, oh my god, oh my god, my poor baby, is she okay?, is she dead, make her breathe, is she dead, oh my god!” I couldn’t stop the hysterical babble, my voice rising until it was as shrill as a harpy.

“I don’t know, Rebecca, neonatology is coming to check her out” my OB said over my wails. Then she held up my squirming daughter.

My first thought was that I’d somehow given birth to a statue–I can still see her in my mind’s eye–bathed in the glow of the spotlight, dark hair matted down–as she was covered head to cheesy toe in vernix caseosa, and once they’d rubbed that off of her, she was pink and pissed the hell off.

I couldn’t tell you who cried louder–me or her–but I know that mine was the more mournful of the two. I figured that I’d used up all my good luck netting a wonderful The Daver and having two healthy boys. How could I possibly be lucky enough to have another whole healthy baby? I’d spent my whole pregnancy thinking just that: I couldn’t dodge the bullet again.

Apparently, when they hit the emergency button and order neonatology up to visit a patient, it means that the medical equivalent of a marching band swarms your room. So, there I was, suspended in midair (my doctor liked to deliver babies standing up) (her standing, not me) (because that would be very awkward) (especially if I pooed on her head) stuck being stitched up, spotlight still trained onto my vagina when a parade of people entered my room. Like extras from a movie set.

Even more upset, I moaned and cried and delivered my placenta, crying more violently than I thought possible, my ugly grey gown now dripping with the tears I’d been weeping steadily. I could barely breathe, the snot poured liberally out of my nose, and without the Daver to wipe it, it just pooled there on my face.

Dave was obviously where he should be–with his daughter–and had my OB not been eye to eye with my crotch I’d have wobbled my still-numb legs over to join him. I’d have clawed my still-working upper body toward her if I had to, but I could sort of see her over the OB’s head. Pink, pissed off, and hugely fat. Over the din, I could hear Dave trying to reassure me, “Oh Becky, you have got to see her thighs! She has THUNDER thighs!”

It was the most normal part of this whole fucked up situation.

The neonatology team swarmed where my daughter was furiously screaming her ever-loving head off, oblivious to the cacophony of cries in the room. They assessed her and after a couple of minutes, decided that it was probably just a fatty cyst on her head. But, to err on the side of caution, they would order a CT scan of her head the following day, so that the pediatric radiologist could take a gander at her noggin.

And just like that *BAM* the room emptied.

Like the water drained from the bathtub in one loud glut.

All of a sudden it was so quiet, so still. I was stitched back into one piece and lowered to a respectable height, my doctor bid us farewell, and neonatology nodded their capped heads at us as they left. Seemingly unconcerned. It was just The Daver, my nurse, and my daughter left. She begged off too, so that she could give us a chance to bond, and Dave gingerly brought me over my daughter.

I was still shaking head to tow, be it from the precipitous drop in hormones or the trauma that had been Amelia’s birth, and I begged him to stay close. Just in case I dropped her. As I managed to wrangle to gown down, I nursed her and as I did, I examined my new child. My sweet cinnamon girl.

She was the spitting image of Alexander, whom I missed so painfully that I actually ached, although her fingers were longer and more elegant, and her hair was dark black and matted to her head. Her eyes were open and she regarded me with these luminous green eyes which seemed to say, “hey, so you’re my mother, okay.” I was enchanted with her pureness, her loveliness. The daughter I’d always wanted was finally here.

And still The Fear. I tentatively pulled up the hat which had been pulled down over her ears, terrified of what I might see. Sure enough, right along the posterior fontanelle, there was a mass, a solid, pliable mass maybe an inch in diameter that I palpated gently with my fingers. I was reassured that this did not seem to cause her any distress as she still stared at me while I began to quietly weep into her blanket.

It was either a fatty tumor or it was something Very, Very Bad.

I’d read about neural tube defects in nursing school–always the annoying overachiever–so I knew that they could occur anywhere along the former neural tube. Typically, they’d occur lower, on the spinal cord, where they’d cause spina bifida, and while I knew that they could happen anywhere along the spinal column, I had no name for what it was called if it were to occur on the skull. But I remembered it technically be a neural tube defect on her brain and the pit of fear in my stomach grew.

The obligatory phone calls were made in short clipped bursts–by Daver as I couldn’t handle trying to talk to anyone yet–and we were prepped to go up to the Mother/Baby unit. As we rolled past the rooms with happy, seemingly carefree families, I was green with envy. I’d wanted shiny pink balloons and huge bouquets of overflowing roses and cala lilies and flowers and visitors and Vicodin, and an epidural that worked, and I wanted to play “Eye of the Tiger” when I delivered, and I wanted to enjoy my time as a new mother one last fucking time.

But my daughter; something was wrong with her. I couldn’t celebrate when there was something wrong with my daughter.

I steeled myself for our visitors as best as I could, wiping the snot from my nose and trying to ice my nearly-swollen-shut eyeballs so that I looked presentable for my dad, my eldest, my sister-in-law and my friend Ashley. They poured in and I tried to make small talk with them all, choking down the dinner they’d thoughtfully brought me which tasted like sand, and tried not to cry. I showed off my daughter and they ooh’d and ahh’d appropriately and I felt like a fraud.

They each knew that she had something wrong with her head, but I’m not sure whether they were trying to put on a happy face or they were just clueless as to how bad this could be. Above their chatter, all I could hear was a constant buzzing. I later identified this as panic.

Even with the aid of an Ambien and a Vicodin, the mix of which should have knocked me on my ass after the labor and delivery I’d had, I couldn’t sleep. I struggle with insomnia on my best days, and on my worst, well, I am a wreck. I tried to toss and turn and nothing, I couldn’t sleep. Or I could sleep lightly, only to wake up when a squirrel farted in Siberia or a raccoon somewhere in the mountains of Egypt broke a branch (are there raccoons in Egypt?)(or mountains, for that matter?).

Dave, seemingly oblivious, and always the one to assume the best in any situation, snored away, not even stirring when I lobbed condiments at him to get him to stop fucking snoring.

(condiments inexplicably included peanut butter)

(as an insomniac, there is very little as awful as having to sit there and listen to other people loudly sleep when you cannot)

I was almost happy when the breakfast cart rolled in because then I could stop pretending to be asleep. The morning passed as sort of a blur to me, although I can distinctly recall removing my own IV port and not letting a soul touch my daughter. I was like a momma lion protecting my baby and if push had come to shove, I probably would have bitten someone had they gotten too close.

Somewhere around 1PM, radiology came by to escort my daughter to her CT Scan. Dave, always the wonderful father, went with, leaving me alone in a room. Shitting my pants scared and all alone. I felt like a shaking bird with a broken wing, stranded and alone. I think I pounded out a bare bones blog post and read and reread my comments just so I felt a little less alone. Bet you didn’t think how much it mattered to hear from you, but it did.

It was my lifeline.

After something like 38 hours, Dave and Amelia were back, Dave beaming ear to ear. He’d gotten the impression that whomever was looking at the stills of my daughter’s head hadn’t seen anything terribly noteworthy.

For the first time in over 24 hours, I relaxed. My jaw unclenched, my fingers uncurled and my shoulders loosened. I began to think of things like “when we go home” and “I wonder how many Vicodin I can score from the doc” rather than, “is my baby going to die?” or the ever popular “is this REALLY how it all ends?”

I nursed and nursed my daughter, stroking her pimply cheek and murmuring to her that we’d get hats and wigs and we’d make bumps awesome, and that it didn’t matter if she had a little lump, she was so beautiful, and hey, there were always ponytails.

The phone rang, and somehow I disconnected this event with the one before it–the CT scan–and I watched Dave go ashen as he listened. He sputtered out that the NICU was coming and the pediatric neurologist was coming to see her and there was something wrong with our daughter. Something really wrong. We didn’t know what–no one, apparently, tells you shit in the hospital–but it was bad.

In another flurry of activity, the NICU came up to take my daughter from me.

They peeled her out of my arms one white knuckle at a time, and as the left the room I was scared to hear this howl, this wolf-like guttural howl. It sounded like a lion who’d been backed into the corner to die. Or a coyote mournfully begging someone, anyone in the still night to respond. I’d never heard anything so eerie in my life, and my entire body broke out into goosebumps. It was so feral.

It took me several minutes of listening to it before I realized that the noise was coming from inside of me. I was howling as they rolled my tiny daughter away from me. I was making a noise I didn’t even know humans could make. My head buzzed as though a hive of bees had taken over where my brain had formerly been and I shook.

And I howled. I screamed and I howled.

Dave was sitting there, a shell at the foot of my bed, wracked with sobs. I’ve never seen him cry like that before or since and I hope like hell I never have to see that again. We held each other and we sobbed and we howled and we wailed, like two wolves, crying for their dead cub.

I hope I never have to make that noise again. Hell, I hope that I never hear that noise again.

We were clinging to each other like two drowning souls.

My postpartum nurse marched into the room after our daughter had departed. An old battle ax of a lady, obviously well seasoned and not interested in the moaning and carrying on that was taking place.

But this was our daughter and no one had told us anything whatsoever and we were scared shitless. The bump could have contained the meaning of life or Jimmy Hoffa’s body–we simply didn’t know. We wouldn’t know what it was for over a month.

We watched her being wheeled away and a small part of us died right there.

My nurse very obviously didn’t care for my hysteria as she began scold. “I needed to get myself together for my daughter.” Because I “had to be strong for her now.” The sentiment is fine, sure, but you have to understand–because you know the outcome now and you know that she is fine and babbling in her saucer into a set of measuring spoons and it’s so easy to look back onto someone else’s story and say, Jesus wept, she overreacted, and probably I did, but we didn’t know anything.

We thought that she was going to die.

I didn’t appreciate this attitude–I banned her from the room after this interaction–from my nurse in the slightest.

We could have used compassion and reassurance, maybe a hug, not being snapped at that I needed to shut my stupid whore mouth. She insisted that we wait 20 minutes before we went down to be with our child, an arbitrary number; a cruel imposition. The NICU wouldn’t have cared what state we were in. But it is was it was.

Another nurse, a kinder one, who must have heard the verbal slapping we were being handed wheeled in a wheelchair for me so that we could go visit our daughter. I’d just given birth, and although I could have given a shit about the number of stitches or the horrible pain I was in, I was still very, very weak. My eyes were nearly slits in my face, obscured by my swollen orbits, and my face was shiny and raw from being furiously scrubbed with hospital issue tissues.

I hyperventilated and wept on our way down, through some secret set of hidden elevators to what I thought was the basement of the hospital, keeping my face down and away from the other patients, who stared, gaping openly and thanking GOD that it wasn’t them. Rightly so.

I gripped the teeny sock–a lone sock that had fallen off Amelia’s foot earlier and I’d randomly stuck into my gown–like it were a life vest, the last thing I had that connected me to my daughter.

We were buzzed in from an unseen source as we approached the innocent looking white door that would bring us to our daughter, now a patient of the secret place, the land of tears.

I’m not a stranger to NICU’s and I happen to find the tiny babies, the preemies absolutely adorable rather than frightening, and the wall of constant sound–the vents humming, the monitors alarming and beeping intermittently and the quiet swish of the staff, moving purposefully from patient to nursing station and back again–doesn’t bother me like it does some. But this was our daughter and, well, no one expects that their child will end up there.

After scrubbing in, we went to see our daughter, who lay now completely naked under what I always called “The French Fry Warmer” hooked up to a zillion monitors, in the area directly next to the nurses station.

This was The Bad Room to be in, as anyone who has spent any time in an ICU knows, because it is RIGHT next to the nurses station. Which means they are keeping an extra close eye on whomever is there. Comforting if the patient is very ill, frightening if you still don’t know which way is up.

I cried into my gown as the other parents looked up at us, nodding in kind of a ‘hey, you too? Fucking sucks’ sort of way. Because your kid is in the NICU and that’s completely fucked up. What else can you say? It’s not like any of us expected to be there. I tried to be quiet with my sobs, and I got a couple of ghosts of half smiles from other parents who sat vigil next to their own babies.

I saw when I gingerly moved from the wheelchair into the rocking chair crammed into that tiny room with a curtain instead of a door, that someone, some kind soul had made several signs for Amelia, to add some cheer to her room. One said “Amelia” next to a red block letter ‘A’ and the other had some sort of Minnie Mouse also with an “Amelia” right there.

For some reason, this unexpected act of gentle kindness made me cry harder.

Just like all of the amazing emails and comments that you guys sent me. I know full-well all the nasty shit the Internet can do to people, but I will never, ever, ever be able to put into words how much it helped to know that people who didn’t even know us were praying for us. I cannot thank you enough for every single comment, email, anything you did for us. Every time I talk about this, every single thing you say to me, every time someone pops up to say something supportive about this, I am so grateful for each and every one of you.

Sitting here, reliving this and having so many of you reliving it with me, there are no words for how much it helps. I am showing you my secret heart, warts and all, and you are here.

Thank you. I am humbled by you.

Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.

I saw the monitors and instinctively checked them as I approached my daughter, getting a sunbath underneath the warmer. Her stats were picture perfect, I noticed, breathing a little more easily, and I made my way slowly to her bedside where she was sleeping peacefully.

I slogged my own soggy bottom from the wheelchair onto the nifty rocker that was shoved into that tiny room; barely a room, more like a closet. She was sandwiched in between to babies who I could hear misbehaving on either side. “Misbehaving” is, of course, a nice way of saying that these babies weren’t doing well and their monitors were alerting their nurses as such. Most of the NICU, I noted as I was wheeled past, always the nurse, was full of Feeders and Growers.

This is a fanciful way, always evoking a pleasant garden of freshly hatched babies, of saying that these were babies who were finishing their gestation outside of the womb. The babies surrounding Amelia were probably in a little worse shape, although with the sensitivity of the monitors, hearing them frequently beep means relatively little, until you see the staff go running.

Of the other babies whom I could see cooking away merrily in their incubators–like I said before, I find preemies adorable–Amelia was the biggest, fattest, and likely the only term baby there. According to her room placement, though, she was thought to be one of the most ill.

Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.

My ass was firmly planted now onto the chair, and I held Amelia’s lone sock as a talisman, hoping it would ward off the Bad News. I was preparing to nurse my daughter again, just waiting for our nurse to come and help me sort through the tangle of wires my daughter was attached to.

Our–Amelia’s–nurse walked in and introduced herself to The Daver and I. While he had recovered more easily and was no longer tearful, I was still weeping. A mixture of sleep deprivation, intense stress, and the drop in post-partum hormones made for a Messy Aunt Becky.

(Boring aside time! I realize that I keep going over and over how I was crying, and so that you do not believe that I am the whiny baby that I appear to be, I’ll have you know that I rarely cry. A couple times a year I might quickly tear up after a particularly brutal House, MD but generally, I’m not tearful. Or flappable. Or a flapper, either. Whatever)

I handed off the box of kleenex that had been pressed onto my lap as we left Mother/Baby and my daughter was brought back to me, hooked up to so many wires that she looked like an electrical outlet. The nurse stood there, kindly, talking to us, but not revealing much of anything at all. I imagine it’s because they didn’t know for sure, but not knowing anything wasn’t exactly comforting, by any stretch.

I begged the nurse to have the neonatologist on staff come and speak with us, since the pediatric neurosurgeon was busily operating on someone’s head somewhere other than the NICU. It’s probably good I didn’t know where he was, lest I have stalked him down. Knowing something–but not specifically what–is wrong with your child is a pure hell I can’t wish on anyone.

Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.

The neonatologist–the same one from the previous day (has it REALLY not even been 24 hours since she was born?)–came over to us, and told us that there was a “bright spot” on Amelia’s CT Scan. I had no fucking clue what that meant and he didn’t follow it up with much, although I did see his lips move, I couldn’t understand anything he was saying. I guess that’s panic for you.

After the doctor left, the nurse came back in to ask if we’d wanted to see the chaplain; to have Amelia meet the chaplain. Now, I’m not super-religious, I feel I must add, but I’ve always, ALWAYS found immense comfort in men and women of the church. And since we’d gotten absolutely no comfort from anywhere but ourselves (and my friends in the computer, whom I adore), I was pleased to meet the chaplain.

She was amazing. Just. Incredible. Of the entire coming month, it was her words, her warmth and compassion that I kept coming back to. She blessed my daughter. My daughter was blessed.

And she was so, so blessed.

Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.

We sat there in the NICU for quite a spell, after everyone left, it was just the three of us. Time in the ICU is timeless. You look at a clock and it could be 4 AM or 4 PM, there are no extraneous clues to tell you what part of the day you’re living through. Besides hell.

But soon enough, I had to go upstairs so that I could change my undergarments and ready myself to see my boys. My sister-in-law was bringing my boys to come see me, and I had to put on my Poker Face. Which, given the raw, chapped and bleeding state of my cheeks, was going to be damn near impossible.

Back up in my room, I saw that I’d gotten some flowers and a basket from two of my lovely internet (slash) real life friends, and it made me cry. Then again, I think the package of saltines that had been ruthlessly thrown on the floor the night before might have made me cry. I wasn’t in a Good Place.

My sons came in a bit after I’d gotten sort of cleaned up–and by cleaned up, I mean, changed my icepack and brushed my teeth–and I don’t remember much about seeing them. I held Alex very, very close as Ben showed me some pictures he’d colored of Amelia. Ben knew his sister was sick, but Alex had no idea what a “sister” was, let alone what being “sick” meant. I held them and pretended to be as normal as I could until I got the call from the NICU. I needed to go down and nurse my daughter.

Talk about being torn into 2 pieces. I bid farewell to my youngest son–my eldest just wanted to get home and I couldn’t find fault with that–who screamed and cried and yowled “Mooommmmyyy” as he was led away to the elevators that would dump them into the outside world. As for me, I found my way back to the super-stealthy-ninja elevators to take me to that innocuous door, the one that should have had some flashing lights and a nifty “This Is Not An Exit” sign above it, and I cried.

I missed my other children so terribly and I was so, so worried about my new child; I felt so torn. Like I was walking the line between two worlds, and not doing a very good job living in either.

I said the same prayer over and over, begging God to let her live, even if she was retarded and her IQ was 43 and she was ugly and had to live at home for the rest of her life, just let my baby girl live. I didn’t care what was wrong with her, so long as she made it out alive. I begged God to take me, instead, I’d had 28 wonderful years on the planet already, and she was less than 24 hours old. Certainly, I’d give my life to save her in a moment.

Hear my prayer, hear my prayer, hear my prayer. Please God, hear my prayer.

After scrubbing the top 50 layers of skin from my arm and signing a reasonable facsimile of my name, I dashed over as quickly as I could to see my girl. There she was, still perfect stats, thrashing about, looking for something to eat. In the time I’d been gone, however brief it was, shift change had occurred, and we’d gotten a new nurse.

When she came in to assess my daughter and saw me weeping softly into her blanket as we rocked back and forth, back and forth violently in that rocker, for the first time in a day, someone asked me what was wrong. I explained that I didn’t know if my daughter would live or die; that no one had told us what could be wrong with her, what that bump COULD be, why she had to be in the NICU, nothing.

She looked pretty aghast that we’d been told nothing, and for the first time, someone tried to reassure us. She apologized that the neonatologist wouldn’t be in until the following morning–some crazy ass brain surgery was goin’ down–and I remember leaving the NICU several hours later slightly less burdened.

Hear my prayer, hear my prayer, hear my prayer. Please God, hear my prayer.

That night, we ordered a pizza and tried to relax in my somber room, trying to let go of some of The Fear. I didn’t feel much like celebrating anything, so no balloons, no stuffed animals, no signs that I had just given birth. I could have been on any floor, in any room in the hospital. There was no joy there.

The nurse brought me my Ambien, and the NICU had called to tell me that they would bring my daughter up to nurse every 2 hours (the NICU runs like clockwork. It’s no wonder that new parents struggle to care for their NICU graduate when they get home. Seriously, it’s a well-oiled machine). I turned on the sound machine to blast white noise over The Daver’s snores, and waited, trying to fall asleep. Unsurprisingly to no one, least of all me, I couldn’t get anywhere close to sleep that night. This made the tally of nights without real sleep at 3.

I was about to lose it.

Somewhere around 4 AM, after someone had ruthlessly barged into my room to empty the wastebasket or something, waking me from the lightest of light sleep, I began to panic. I’d sent Dave down to the NICU to sit with our daughter in the vain hope that having him at her side would set my mind free, so I was alone. The panic that had been a constant dull buzzing had morphed into something much more sinister and I knew what was about to happen.

Frantically, I paged the nurses station because I knew I needed help. I explained as carefully as I could that I was about to have a panic attack and that I needed my nurse NOW. My nurse came in, I don’t remember what she did, but she didn’t want to call my doctors because they would be rounding in a couple of hours and I could ask for something for my anxiety then.

Which, hi, that helps.

(this was, I need to tell you, a totally different nurse than my dayside one)

She told me to “relax” and then left. I tried to “relax” which was as useful as punching myself in the face with a hammer, and soon enough I put a call back into the nurses station, begging, pleading for them to call my doctor. I was panicking so badly that I quickly inventoried all that I had in my room that might help with this. The best I could come up with was a bottle of Scope.

I didn’t end up drinking it, but I did call the NICU and beg Dave to come back up (he was unaware that something was wrong with me, more than whatever is NORMALLY wrong with me) and some other nurse took pity on me and called my doctor, who prescribed me an Ativan. A swarm of people all happened to come into my room at the same time: a partner in my OB practice who looked terrified by me but discharged me, a nurse with that beautiful pill, a tech to get my vitals, and my sweet husband, who was trying to reassure me.

It sounds, in retelling this, that they were all there to help, but it wasn’t really like that. Dave and the nurse were trying to calm me down, but the tech, the doctor and whomever was washing the floor just were doing their jobs. With spectacularly bad timing.

Ativan on board now, I was trying to gulp some calming breaths and stave off the panic which was doing none of us any good. They’d turned off the lights, and covered my still-swollen body with fresh sheets, cleaned off the bedside table and turned on the white noise machine. It had to be about 7:30 AM.

Finally, I began to relax and beat the panic away, if only slightly. Dave held my hand and told me over and over and over again that my daughter was just fine, she was perfect, she was wonderful, she’d done great overnight, she was beautiful, she was going to be just fine. It was soothing to hear, but what would have been MORE soothing? Having her bassinet next to my bed where it belonged instead of three floors below.

As I always tell Ben, “You can’t always get what you want,” and I got what I needed. I was finally coming down, although I was still weeping, panicked, and out of my mind with fear.

Then (dun, dun, DUN), the absolute worst person to show up did. (no, not Nat).

Lactation services.

(Pithy aside time: I never got Ben to nurse, ever, but I went to lactavist after lactivist, learning pretty much all I ever could care to know about breastfeeding. THEN, I worked OB long enough to teach many, MANY women to nurse their babies. Hell, I’m sure I could give YOU some tips, if you wanted. After that, I had Alex, who nursed constantly. I am no stranger to the boobies, the holds, the implements of torture, the creams, the bras, the lotions, the pumps, the storage bags, the supplements. While most of parenting is a guess-n-check thing, I’ve pretty much gotten nursing down)

So Lactation Services showed up, because they say they’ll come by every day you’re in the hospital with a new baby, and they do. It’s awesome for people who need help because breastfeeding is nowhere NEAR as easy as it looks on those weird Lamaze videos.

(also: why are people in the Lamaze videos always naked?)

But I didn’t need help. And when she showed up and saw me shaking in bed, being held by my husband while the nurse clucked around me like a mother hen, lights off, white noise blaring, she should have excused herself. But no.

No.

She introduced herself perkily and asked me how breastfeeding was going, and I answered that it was fine. Which really, was kinder than the situation warranted. I’m kind of an emotional cripple, honestly, but had I walked in on this hornet’s nest of a room, I’d have promptly left.

I expected this to be enough for her, but no, she followed that up with, “Do you have any concerns about breastfeeding?” Wrong question, dipshit. Time, place, all that.

“You know what?” I snarled, “I’m MUCH MORE concerned that my baby is going to die than if I have proper latch, okay?”

Again, she could have gracefully bid be farewell. But no. She kept on keeping on.

“Well, what about your concerns with BREASTFEEDING?” She asked, just not getting it.

I responded with, “Look, if she’s dead, I’m not going to give a FUCK about colostrum, okay? Please!” I began to sob heavily again.

It was then that Dave told her to get the fuck out of our room, and in my mind’s eye I see him leading her to the door forcefully, but I’m not sure if that’s how it went.

Finally, with a DO NOT DISTURB sign on my door, I slept for a few hours.

I awoke when The Daver bounded in and announced, “the neurosurgeon ordered an MRI! And he’s really nice! And not concerned! He thinks it’s an encephalocele! It’s a piece of brain or something that’s herniated out! We can go home after the MRI! And follow up with the results next week! Oh, I wish you’d met him. He was so, so nice.”

And just like that, we went from critical to discharged in less than 36 hours.

First, the facts, which you will see form a fairly short list. Encephalocele’s are part of the National Institute of Rare Disorders, so certainly what is out there is not been well researched. After her surgery, after I could research it without throwing up, I popped open my pediatric nursing text, and sure enough, there was a tiny paragraph on one page, where as the other neural tube defects had entire sections devoted to them.

This is what I found in my brief research (as it pertains to my daughter):

• It is a neural tube defect that develops around 28 days of age representing a defect in the skull where brain tissue (or not) herniates through.

• The absence of brain tissues in the herniated sac is the best indicator of survival.

• Per the CDC website, encephalocele is found in 1 of every 10,000 births (I have seen it, I should add, as high as 1 in 5,000, which doesn’t sound too rare to me)

• It’s the prominent cause of spontaneous abortion before 20 weeks.

• Having an encephalocele reduces the chance of live birth to 21%

• Only half of those 21% survive.

• 75% of those survivors have a mental defect.

• The risk of mental defects is higher when the defect is located on the back of the head.

• It’s more common in females than males, more common among siblings, and has associations with many chromosomal abnormalities.

——————–

Now, I didn’t go home and start googling, because I have learned that The Internet doesn’t always tell the truth! *gasp* I KNOW. That’s the problem with The Internet sometimes, especially when you’re looking up something about your daughter’s head: it’s unfiltered. Like Lucky Strikes.

Besides, denial being a powerful thing, I sent my mother, brother and sister in law out for as many small hats as I they could find to cover up Amelia’s bump. Out of sight, out of mind. Besides, I couldn’t remember what it was called AND I DIDN’T WANT TO BE REMINDED. We’d scheduled a follow-up with the pediatric neurosurgeon for a week to the day that we were discharged so that we could go over the MRI that she’d undergone.

This is a picture dated February 3, 2009, which meant it was before we learned specifically what she had. We were in limbo. I was not well.

You want warts, Internet? YOU GOT THEM. (on me, not her)

Dave took this picture and said, “You look so SAD,” and you know what? I was.

Because for all the advances in modern medicine; for all that we have learned, kids still die. Babies still die. Life is fucking fragile, it’s unfair and sometimes it sucks. These are facts too. Until this stops happening, I will always carry this sadness around in my heart, as much a part of me as my black hair and my love of cheeseburgers.

For all of the scans, the vials of blood taken from my daughter, for all of the experience the neurologist had, at this point, we really nothing to go off of. I had no way to know which way was up.

Dave loves a plan and once he knew we’d be meeting with the doctor, he felt better. Dave also never had to rotate through the transplant floor and see kids who would die if they didn’t get a new kidney, so it’s safe to say that both of our perspectives are a bit skewed. Somewhere in the middle would have been the rational place to be, but what the fuck is rational about living in limbo?

No, I couldn’t celebrate Amelia’s birth until I knew that she wasn’t just going to die on me, nor could I handle the (supposedly) well meaning people who dismissed my fears. No, Internet, I don’t mean you, don’t worry.

In the face of these sobering facts about my daughter’s condition, I quickly grew weary of people telling me not to worry. It would be like telling me telling you to hold your breath for a week. Not quite within your control. It felt like a slap in the face after the 56th time, and although I’m pretty sure at least one person did it because they were mad at me, I imagine that most people just thought that they were being helpful.

I could write volumes on how unhelpful that was.

But brain herniation or no, I had a life that I had to lead no matter what. The world marches on even after yours has fallen apart, and I can’t help but think it was for the better. I still had a toddler to feed and love on, a 7 year old who was so proud to be a big brother, and a menagerie of animals who missed me desperately and followed me about the house nervously wherever I went.

(Pointless Rambling: my animals are really, really keen on sensing emotion. If I get upset, my cats? Come running to lay on me. The dogs both sit on my feet, and the bunny hops around her cage nervously. I don’t pretend to understand why)

I spent most of that week cleaning the house from top to bottom, trying to channel my nervous energy away into something more useful than wringing my hands and gnashing my teeth. I find it’s the one thing that helps quiet my mind, short of exercise and gardening, and it being February in the Midwest, and being freshly postpartum, those two ideas weren’t exactly going to work.

I suppose I could have dug a large ditch in the backyard, because fuck, digging out a trench in the frozen ground? WOULD HAVE TAKEN A LOT OF TIME AND ENERGY. And then spring would have come and I would have kicked myself for digging a trench in my already wee backyard. I guess we could have turned it into a mud-wrestling pit, but I fear I may be going off track here.

It’s a real shame I didn’t have a deck to build or a house to paint, because I could totally have done it singlehandedly right then. Never underestimate the power of a parent in crisis mode, right?

I’ve never felt like more of a fraud than I did those first few days home. I was so happy to be home, every single time my daughter woke up from a nap and opened her large eyes to look at me, I got misty-eyed. Here was this beautiful creature, all my own, who I may have to give back in the next few weeks. This miracle whom I’d loved from the moment I found out I was pregnant was probably not mine to keep.

I don’t remember a whole lot about those days, although I do remember how loved she was. Even by Alex, my little man, The Momma’s Boy, ESQ, was enchanted by her loveliness. Even if she did sort of look like a garden gnome. She was my garden gnome, dammit. I was so, so happy and so, so sad all rolled into one gigantic, arrogant, leaky puss-bag of a woman.

Through a haze of anti-anxiety meds, the first week passed and we found ourselves at the door of the neurologist, who looked shockingly like Stephen Colbert. He was a kind man, which reminds me that I probably should write him a card telling him how incredibly kind he was to all of us. It can’t have been easy to see us there, I was weeping softly, my daughter so new and fresh; still a fetus, really, and Dave, poor Dave, just trying to keep it together for the rest of us.

————-

I remember it happening when my father had his unexpected heart attack last winter and wound up in the ICU for nearly a week. A day like any other, a day like today, in which my biggest concerns went quickly from ‘œMan, I hope Alex goes to fucking sleep tonight’ to ‘œMan, I hope my dad makes it through the night.’ The shift in thinking here is vast and it’s frighteningly quick.

Suddenly, even news that on a normal day would be some of the worst news you could hear ‘œhe had two clots, one of which is threatening to kill him, but we’ve removed one of them’ sounds rather’¦good. It could always be worse, you tell yourself as you pace up and down those hospital corridors peeping into rooms whose occupants, well, HAD it worse than you do. But somewhere in those dark recesses of your brain, you remind yourself that even though for now, for RIGHT now, things are going as well as you can expect, they can sour without warning.

Yesterday, The Daver and I took our week old daughter to a pediatric neurosurgeon after we picked up her MRI films from the hospital. We sat there in the waiting room, me with a baby on the boob while he filled out the piles of paperwork and received the kind of pitying looks from the other patients as they walked by that made my heart swim with tears.

Yes, it reminded me, it is this bad.

After the neurosurgeon, ranked one of the best in the area, bounded into the room, filling it up with a sort of ebullient energy that only someone who abso-fucking-lutely loves his job has, he flicked through the massive stack of films to find one to show us what was wrong with our daughter. In cross-sectional picture form.

And for some reason, despite my incredible love of anatomy, my utter lack of horror for things like internal organs and dissections (I am, apparently, my father’s daughter), I could hardly handle looking at these films that showed my daughter’s head. In ways I never wanted to imagine it.

It’s funny'”I know HOW these things work, I could probably give you a dissertation on reading an MRI of the brain without much prep'”and yet seeing these parts of brain, parts of my DAUGHTER’S brain, made me cry and feel revolted. It felt unnatural to be looking at these films. In several, I could see that she was crying, or at least her mouth was open and neck arched backward and I ached. I physically ached for her.

Sure enough, right where some brilliant tech had put some of the measurements on the films, the brilliant and kind doctor pointed out what we can easily see from the outside: her cyst. In medical terms, as I alluded to by the title of my last post, it’s called a cephalocele, and it’s sort of like a hernia on the skull where the bones of the skull didn’t properly fuse together while in utero.

I’d known all about cephalocele’s before I’d birthed Amelia, before I married Daver, and I knew enough to know that the one that my daughter has been born with is really pretty minor. Typically, they cause all other sorts of neuro symptoms and retardation, but by the grace of God, Amelia seems to have none of those. We will, of course, know more as she ages and appropriately (or not) hits all of her milestones.

The upside to her cephaolcele is that it’s not an ENcephalocele, which means that the cyst is full of cerebrospinal fluid WITHOUT brain matter. The bad side is, of course, that she’s still going to need brain surgery in the following weeks. And no matter what way you try and spin this, it’s fucking scary.

(ed note: the above paragraph was not true, and was written the day after our appointment with Neuro #1. Amelia did have a true encephalocele, complete with brain matter)

The bounding doctor would like her to have this surgery in the next couple of weeks so she won’t remember it when she gets older, and while it makes sense to me, I’d still like to cocoon myself away from the thought of my daughter going under the knife for the next, oh, I don’t know, 60+ years? By which time I’ll be dead and I won’t have to sit in the PICU for several days while she wakes up, my breasts aching and full.

Unfortunately, the doctor whom I adored on sight, does not take my insurance and although I have a PPO, I’m not sure we can swing the thousands of extra dollars it’ll require to have him specifically do the surgery. He referred us to a colleague of his whom we will see on Wednesday of next week and form a Plan Of Attack.

I only wish this Plan Of Attack included leaving my sweet baby girl’s head unscathed and eating a bunch of Funyons while sitting on my bum, but I’m pretty sure I’m not going to get out of this one.

And so I sit here, waiting again while freaking out quietly, and trying to remind myself that things could always be worse. Always. It doesn’t help much, but it’s all I have to cling to right now.

Well, that and my brand new bottle of Valium.

Do I look as stupid as I think I do, The Internet?

—————

The month between January 28 and February 26, 2009 was the longest and most brutal of my life. I’ve gone through really dark periods before–like the time before I got pregnant with Ben–where I was adrift in a sea of nothingness. Alone. But this was different. I wasn’t alone–hell, I couldn’t let Daver out of my sight without hyperventilating, but I was completely alone. What I faced, what I was going through, I had to do it alone.

After the initial visit with Neuro #1, whom I would (still) have happily married right then and there, we got in to see Neuro #2, who was not a particularly kind man. He wasn’t unkind, just all business. He made a very good case as to why we should have him operate on Amelia rather than send us all downtown to the major children’s hospital there, and we went with it.

But still, we were taking our infant daughter to the neurosurgeon every couple of days and there’s very little that is awesome about that. Or off for another MRI, or to see the pediatrician. We were flitting in and out of doctor’s offices more than a patient with Munchausen’s and it.was.exhausting. The same pitying look, the same shock when the nurse realized that I was not Amelia, that no, the tiny baby bean, barely more than a fetus, was who the Big Bad Neuro was going to see.

There’s a lot of that first month that I don’t remember. What I do remember is sort of snapshots of moments in time.

————

Giving Amelia her first bath in the baby bathtub and sobbing into her wet (oblivious) head, wondering how I was going to get through all of this. I can still smell the Burt’s Bees soap mixed with her newborn wet-smell and feel the silky smoothness of her cool skin like it was minutes ago instead of months ago.

———–

Grimly making batch after ever-loving batch of cupcakes so that I felt as though I was Doing Something, instead of just waiting to give my daughter over to a surgeon who may or may not give her back to me. I’ve always loved to bake, rarely found a good reason to do so, but I do enjoy it. But this wasn’t about enjoyment, I don’t think, I think it was about action.

————

Being physically unable to answer the phone as it rang, or talk to anyone who called. Mostly the people who called were calling about my daughter anyway, and the moment she was brought up, I couldn’t talk. My throat closed painfully and I couldn’t choke out words.

———–

Rubbing the soggy spot on the back of her head once I realized that baby hats didn’t quite fit her yet, and weeping softly into her sweet smelling neck, trying to memorize every part of her so that I could always bring her memory with me wherever I went.

————

Being unable to read the preauthorization of my daughter’s surgery from the insurance company, as it contained words I still cannot say out loud. It made my stomach sink and my skin grow cold and I had to sit down quickly after I opened it thoughtlessly before I passed out. I would have given anything–ANYTHING–to take her place on the OR table.

—————-

I remember laying in bed, sobbing as my heart broke into a gazillion shards, as Dave wrenched her out of my arms to take her to get type and cross-matched so that they could have several bags of blood on hand for her surgery. Because she would probably need a blood transfusion. My 8 pound baby girl, my light, my love, needing multiple bags of blood. I wasn’t brave enough to take her to the lab myself so I made Dave go alone, like the chickenshit that I am.

—————–

But there were moments of pure light and joy too.

Seeing Alex transform from a baby into a big brother, and watching with pure delight as he shrieked “BABY!!” whenever he saw his sister made my heart swell so hugely that it might have burst in my chest.

—————–

One night, while I determinedly mixed up yet another batch of cupcakes (for the record, I do not normally care for cake. Or cupcakes. But this, this comforted me), Dave swooped by, holding Amelia and walking sort of funny. Wondering if he’d gotten his keys lodged in unmentionable places, I asked him what he was doing.

“Dancing with my daughter,” was his reply. “I’m her legs right now, because she can’t use her own yet.”

——————

Teaching Ben to hold his sister and watching as he stroked her head gently and kissed her, enchanted by her, thrilled beyond belief to finally have his baby sister.

————-

Such joy and such sorrow all in one neat package.

Oh, how I wouldn’t give to go back and give that beaten down version of myself a heads up that she would live. I wasn’t crying because I was sorry that this was the way things were, I wasn’t sorry that her life began as such–if anything, it further solidified how lucky we all are, even those of us without feet–and I wasn’t sorrowful because I thought that I would have another special needs child. I cried, I sobbed, my heart shattered because I thought my daughter would die. And I would have driven her to her death. I could never have lived with myself in that reality. Ever.

If I’d let myself believe for even a fraction of a moment that she would come home with us from the PICU, no matter how blitzed out on morphine or how mentally retarded she was, I wouldn’t have been wracked tears most hours of the day, shaking into my daughter’s body and trying to make sure I remembered every squeak, every grunt and every breath she took. I’ve read other bloggers wish they could go back and tell their teenaged self something or another, but I never had much to say to Aunt Becky vintage 1998. Really, I don’t regret anything.

Maybe I would tell her to stop dying her hair red.

(redheads should be the only ones who go red)

But I digress.

I want to go wrap my arms around the person I was back then, only 5 months back but a lifetime ago, that I can still see in my minds eye, miserable and broken with nothing that could provide comfort or solace. I want to tell her that she would soon watch her daughter roll over, then sit, coo happily in her bouncer and wriggle her whole body with joy when she caught sight of her mother. I want her to know that while things were awful, there would be light and it would be good.

With Amelia, my sweet gooey cinnamon girl, there will always be goodness and light.

Always.

Still unsure about this whole solid food thing. But damn, that pizza looks effing fine, Momma.

The Morning Of The Surgery, I woke up more calm than I’d been since the whole nightmare started, not even a month before. We’d all aged so much in that month. It was like all my worrying had already peaked and I was left to deal with my more standard and rational self (shut up. It’s my blog and I’ll call myself rational if I want to). It was a damn good thing because last night as I gave my daughter a pep talk reminding her that she had to be a strong baby girl and kick this surgery’s ass I broke down. And I mean I BROKE THE FUCK DOWN.

I was convinced that The Bad Outcomes that Neuro #2 had mentioned would be the only way this could end. I’d always figured I’d have a houseful of Sausages, never a mother to a daughter. Never thought I’d be so lucky. So, no one could convince me that I was not driving my daughter to her demise. That kind of responsibility was unlike anything I’d ever felt before, and it weighed down on me like a stone noose around my neck.

But I was strangely calm that morning, as the sun rose and the valium went down the hatch, the sky was my favorite color: sky blue pink. The color I always used to draw when I was a kid, always the backdrop to the stories of my pictures, so it seemed especially appropriate that this was the backdrop to this story; the way things would end. One way or another, this was the end of days.

Uncharacteristically, Amelia sat in her car seat without crying, which was especially amazing since she’d been denied food or water for hours before, and she was still, technically, a newborn. Dave and I chatted nervously about this, that and nothing at all. I remember having a debate about the psychologist with the dog, and what strikes me most about remembering this is that neither of us could remember the name of that particular shrink (answer, later determined to be Pavlov). I guess neither of us was as coherent as we’d thought as I cannot tell you how many different psych classes I suffered through over the years.

Calmly, we handed the car off to the valet and went upstairs to the surgery center, where we were to check-in, straight past the NICU doors where we’d been happily sprung from what felt like years before. I choked up as I had to tell the kindly old woman behind the desk the name of my daughter–once again, they looked at me as though I must be Amelia Harks, which I would have happily pretended to be so that I could take her place–but we managed to check in without me running off with my daughter.

After taking a seat on the chairs, Dave firmly gripping his daughter, as I couldn’t go too close considering I smelled like a Milk Factory. To taunt her with it when she couldn’t eat seemed unnecessarily cruel, especially for someone who was about to have her brain cut open. Only a couple minutes did our butt cheeks graze those chairs before we were called back to the surgical prep area.

The nurse–the incredibly kind nurse–took wonderful care of us, but when we had to take her out of the outfit she’d been carefully stuffed into and put into this gown designed for probably a 4 year old, it once again dawned on me how truly fucked up this was. Our baby was having brain surgery. Cut it, dice it, filet it on up with clarified butter, it’s all the same freaky statement.

But there we sat in her surgical suite, Dave bouncing his daughter to keep her happy, while I signed her life away with my real name. I’d imagined this scenario a million times before, and always I used an alias, before I busted the baby out and ran away with her, hitchhiking to somewhere, anywhere else. I did it, I signed her name like an adult, I met with the surgical assistant, the anesthetist, the surgical nurse and finally the neurosurgeon. I didn’t, much to your shock, bite any of them like a feral dog, I didn’t scream “Get your whore hands off my fucking daughter,” no, I was nearly respectable. I mean, it’s still ME, but I was almost…normal.

Forgive the shitty quality of this photo: it was taken with my iPhone while I shook.

When they came to take her away from us, I didn’t cry. After crying buckets of daily tears, I didn’t cry. The tears were gone. Useless now. It was do or die and the ball was rolling. Pick your dumb metaphor, it was in God’s hands. Well, God and the neurosurgeon.

I had my Internets who got my back, I was on prayer lists, and it was show time. It’s so stupid when I type it out here, it sounds so trite, I know, but it’s true; you guys held me up, you dusted me off, wiped my tears, helped me put on my big girl panties, and you held my daughter in your thoughts and your arms that day. Words can never thank you enough for this. I mean, I can TRY, but trying to quantify how I felt that day would be kind of like trying to tell you that the Sistine Chapel was “pretty.” Yes, okay, and….?

Dave and I made our way carefully back to where we’d been sitting, prepared for the 6-8 hour surgery (if memory serves me correctly) they’d predicted, and instructed not to leave the area. Especially together. I popped another Valium (Dear God, thank you for Valium) and sat down and dug out my iPhone. Just as I was checking my email and reveling in how many wonderful people I’d been lucky enough to meet along the way, my father ambled in, NY Times under his arm.

I’d spent the weeks before Amelia’s surgery begging people to come and sit with us. Strength in numbers.

But no one could. Well, aside from my father and from my friend Nathan.

My dad showed first, looking remarkably calm (I’d venture a guess that he was riding his own Valium train here, but this is an unsubstantiated claim) and Dave took the opportunity to run downstairs and get some breakfast for us. I am as shocked as you to report that we both were hungry and able to eat.

Just as Dave returned with a tray full of breakfast goodies, the surgical tech came out to us, stopping my heart for a nanosecond. She had a bag with a biohazard label on it and she handed it to me, explaining that Amelia had just gotten her first haircut and she knew that I’d probably want to save the hair for her baby book.

(Mental note: buy baby book)

I begged her to tell me that my baby was all right, and she did, she assured me that Amelia was just fine. Then she made her way back into the bowels of the OR, leaving me there, holding a baggie of my daughter’s hair. It was so fucking surreal.

Always one to deflect the gravity of the situation with humor (lest you wonder for a moment where I learned to do it) my father informed us that it was just about time now, as he’d finished his cup of coffee, for him to go back and scrub in. He informed us that over the past couple weeks, he’d gotten his MD. From the Internet. So now, he was going to go and direct the neurosurgeon on how best to do his job. Picturing my father, wandering back to the OR to direct the cocky neurosurgeon on how to do his job was too much for me, and I busted out laughing.

Nathan showed up then, and I took the opportunity to go for a walk with him, leaving The Daver with my dad and the 50 million bags of crap we’d brought for the 3-4 day PICU stay. We wandered down to the cafe to get a cup of coffee and then decided to check out the gift shop, where I bought my daughter her first piece of jewelry. A heart necklace, covered in tiny crystals. I thought about how I was going to tell her about how she got this necklace, when I bought it, and how important it was.

We walked to the chapel then, so that I could than the pastor and say a prayer for my daughter. Not being raised in the church myself, I’m always hushed and in awe of places of worship. It’s a magical place for me, very special, and it never fails to calm me.

Done with Excursion #1, we took the bank of elevators up to the second floor, just above the chapel, where my husband sat with my father, waiting for our daughter to be done. Never one able to quietly sit back and wait, especially for something like this, I’d planned other excursions through the hospital. Maybe I’d stop in and do a comedy act for some sick kids or something. Maybe I’d get arrested for trying to do a comedy act for sick kids, who knew?

I knew I had some Super EZ crossword puzzles to muddle through and figured I should probably get started on it, so onwards and upwards we traveled.

The elevator banks opened to my husband whizzing by in the company of another dude whom I had never seen before.

‘œOHMYGODTHEREYOUARE!!!’ He panted in my direction.

Without having a moment to react–which, in hindsight was a Very Fucking Good Thing–he shouted ‘œSHE’S DONE! SURGERY IS DONE! COME ON, COME ON!’

I threw my stuff to Nathan, who either promised to sell it to the gypsies or take it up to the PICU for me, I didn’t give a shit either way, and followed The Daver, who was practically running.

“OHMYGOD,” I screeched, making sure I’d heard him properly. “IS SHE ALIVE? OHMYGOD, IS SHE ALIVE?” I was terrified suddenly by the commotion.

Then he turned back to me, “YES!” He yelled, my normally quiet husband yelled, echoing through the marble hallways and causing people to stop and stare. I didn’t give a shit who saw us. “She’s JUST fine, Becky!” Ebullient, I didn’t have a chance to react before we were ushered into this smallish room.

The Valium had dulled my nerves to the point where I really didn’t quite get what he was saying clearly, but the small room where we’d been stashed was obviously not an “Oh Fuck” room. There weren’t any pamphlets on organ donation, DNR’s, Power of Attorney, nothing, which was an awesome sign.

I turned to The Daver, unsure of why we had been shoved in a closet, and asked what the hell we were doing. “The doctor wants to talk to us now. She’s out of surgery and she’s FINE!” I don’t remember if I cried, but I probably did. This time, they were tears of joy. Pure joy.

I had a daughter. I had a daughter.

A daughter who would grow and embarrass her father with her thong underwear in the wash. A daughter who would probably eschew my love of frilly dresses, diamonds, pink and sparkly. A daughter who would hate me for years and spend hours talking about the ways I’d fucked her up.

But she was alive, my daughter. My daughter was ALIVE. And she was mine.

All mine.

Fresh from the surgical floor, because she was a tiny baby, they brought my daughter down to the PICU to recover. We nervously paced about the Family Waiting room for her nurse to come and get us so that we could see her, I can’t even tell you how long we sat there. Time in the PICU, like the NICU and any other ICU is kind of timeless. 3AM and 3PM aren’t a whole lot different, although there are a lot less visitors at 3AM. If things are good, that is.

After what seemed at least 20 hours, but was probably 7 or 8 minutes, the nurse came to grab us to take us to our daughter. And there she was, in that pesky ICU room RIGHTNEXTTO the nurse’s station again (different floor, sameish room arrangement) because she was fresh post-op from brain surgery and probably the most critical patient on the floor.

But there she was, head swaddled in yards of bandages and what looked like painting tape but was (let’s hope) not. She was awake and hoarse from being trach-ed, confused and crying. Her precious hand, her best friend, was currently splinted and unavailable for her noming pleasure, and she was very obviously swollen from surgery, but she was alive. Amelia, she was alive.

While it may have bothered some to see their child this way, trust me, this was a relief.

She calmed down and eventually fell asleep. As she slept off her surgery there in the PICU breathing the plastic smell of anesthesia in and out with every breath after miraculous breath. Her father hovered near her crib, her blonde shadow, unwilling to leave his only daughter for a moment, and feeling particularly restless, I wandered down to the gift shop.

I’m a total sucker for gift shops, ESPECIALLY those aimed at children. I pulled out my AMEX there and bought pretty much every pink frilly thing I could find. I bought a swarm of balloons–the big sparkly Mylar ones that all proudly claimed “IT’S A GIRL!”–probably 10 or 12 different huge balloons. I was celebrating the way I couldn’t before. My daughter was HERE, dammit, and I was going to shout it from the rooftops.

I teared up a little as I paid for my carefully chosen purchases, running my hands over the corny chocolate “IT’S A GIRL” cigars that I’d bought for the boys and marveling at how quickly one could go from miserable and numb to mind-blowingly happy. The volunteer gave me a weird look as I signed my name gleefully to the exorbitant price slip, and I suppose I must have looked weird. Maybe she thought that I was crying over the cost of it all, but she didn’t know I’d have paid 30 times the amount listed there.

The good news just kept rolling in.

As a testament to her grace and strength rather than being discharged 3-5 days later, Amelia was sent home with her adoring fans the very next day with a rather ugly 2 inch scar up the back of her head. We went home with our other children (who’d happened to be there when she was discharged) all of them crammed into our CR-V, a whole family at last. I don’t remember much about that night, except celebrating with crappy champagne and awesome Chinese food.

Your guess is as good as mine as to how this will affect her in the long run. The likelihood that she is affected somehow is, well, you read the statistics. And since she is being followed by pretty much every state and government program you can think of (and THEN some), they’ll probably find something of note. Because examine anyone under a microscope, and you’ll find something wrong.

She seems normal, and if I didn’t see the stretching scar bisecting the back of her precious head (it now takes up a good portion of her head) and feel the skull implant below, I’d not have thought anything wrong with her. Truthfully, as I told her in the NICU, crying into her newborn head, I don’t care if she’s stupid or slow or ugly. And I don’t.

My daughter is perfect and lovely just the way she is. And after all she’s been through, I have no doubt she will become a particle physicist. Because that is what will happen. And if she’s not, well, as I always say (usually referring to myself), the world needs ditch diggers too.

As for rest of us, we’ve all come out the other side a little different. I don’t know how you can’t.

Ben hates hospitals because “they make mom cry,” Alex flips the shit OUT when I’m not home with him, immediately thinking I’ll be gone for longer than 20 minutes. Dave is, well, still Dave.

We’ve both lost a few friends during this ordeal, and maybe these were relationships that were doomed from well before this, it makes us both sad. I’m tired of losing friends during Major Life Changes, but I suppose it happens to us all. Dave has lost some of his naivety but his rose colored glasses always turn the world into a happier place than it is. I love this about him.

(I also hate this about him sometimes, when I want someone to cry and Rage Against The Man with me, but this is not important for this entry)

And as for me, you know that I have a touch of PTSD. I wrote this whole story down here, in my blog so that maybe some of what happened could be let out, like draining a puss-filled wound or dumping out a shitty martini. I hope that the malignancy of this whole effed up situation will have been sussed out and lose some of the power over me.

One day, I hope this will just turn into another story I can tell, just like when I went to the hospital because I peed my pants (twice!) or when I had my first colonoscopy at age 23. I hope that I eventually stop associating the smell of alcohol and hospital soap with my daughter and pray that as her hair grows over the scar, I am able to make as much peace with this as best as I can.

I love my daughter, she is here, and she is well. That is blissfully simple.

I am lucky to be able to do this, to burrow my face into her sweet smelling face while she gnaws wetly on my nose or my cheek, kissing her while I tear up with joy, because I have my daughter. But I will always think of those who weren’t so fortunate, and I will cry and shake my fist at the sky, because that is what you do when you realize the world is not a fair place. Because it’s not.

And while I know that I will never look back on this and laugh, because it’s just not funny, I hope to always look back to see how blessed we are. I want to remember the amazing grace; the simple unbearable good that we’ve found along the way.

I will never take this, any of this for granted.