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.

The most important things lie too close to wherever your secret heart is buried, like landmarks to a treasure your enemies would love to steal away. And you may make revelations that cost you dearly only to have people look at you in a funny way, not understanding what you’ve said at all, or why you thought it was so important that you almost cried while you were saying it.

That’s the worst, I think. When the secret stays locked within not for want of a teller, but for want of an understanding ear.

-Stephen King, The Body

I’ll be back tomorrow with more pointless drivel. Today, there are too many things I can’t talk about here anymore that I can’t seem to escape. Even in writing. I don’t mean to be deliberately cryptic, it’s just not my story.

Let me distract you! Look! A cute baby picture!

Further proof that she is Her Mother’s Daughter (kind of, but not entirely like His Master’s Voice. Remember that ad?).

This is designed to make you feel old. This was almost 4! years! ago!

Alex showing his displeasure at having his hair washed. Because I am a huge jerk who wants my children to be clean.

xoxo.

Love to you all. Thanks for being there.

(God, am I REALLY talking about feelings and love? BLECH)

P.P.S. Tell me something cool. No, really, I want to hear about your stuff-n-things.

Something I here don’t do a whole lot is give credit where it is due.

Sure, I tell a lot of gross girl-joke stories, and if you want information about the the current state of my pubic hair, look no further. While that is all well and good, I feel as though I must give a shout-out to the one person who has made this entire blogging experience happen to us, AND to most of you: my husband.

And to be fair last night he actually THREW a crusty greenish yellow booger at me while he was sleeping, but who can blame him? I am still the person who was, according to both of her parents, and I quote, “Born smoking a cigar and barking out orders.”

Yesterday WHILE AWAKE, he did something for me that I couldn’t do myself: he took my bestest cat in the whole wide world in to be put to sleep. He held him while he died. And no amount of crusty boogies thrown at me day or night can minimize that to me. It meant EVERYTHING.

My heart was wearing a less-sad face knowing that Finnigan died with someone who loved him (almost) as much as I do.

This isn’t, by any stretch of the imagination the only thing that Daver has ever done for me. He allowed me to pick out AND BUY the car that I wanted over the car he wanted. He’s even learning to like it! That may have something to do with the fact that I GRILL him about it over and over, but so what? Right?

He doesn’t even talk TOO much about annulments when I use my crappy way of evoking the cheerful daemons when he’s in a nasty, foul, disgusting, flatulent mood. I mean maybe you don’t know this but I SING HIM ROD STEWART! AT TOP VOLUME! Now I of course, ADORE Rod “The Hot-Bod At 708 Years Old” Stewart, but I recognize this as another of my dirty and gross qualities.

Take whatever dislike you likely have for my choice in music and couple that with the fact that my singing physically shears wallpaper from the walls. Really, it does. This is why we have none in our house.

In this vein, I leave you with my favorite quote from my favorite Rod “I Can’ Believe I’m Still Makin’ Baby Batter’ Stewart, and I dedicate it to you, my sweet Daver:

You’re a rhapsody, a comedy,
You’re a symphony, and a play;
You’re every love song ever written,
But honey, what do you see in me?

I met Caroline in junior high when she was assigned to sit next to me in Art Class, my least favorite class of the day because I was about as artsy as a tree-frog on meth. I thought this was fantastic as she was far artsier than I, and I thought the skill might pass through the air via osmosis, and if not, maybe I could copy off her or something. Cheating was wrong and stuff, but so was making me try and pretend to be an artist when I clearly only made paintings that resembled cat pee on plasterboard.

She and I hit it off pretty well and I remember when we were assigned to make and record a commercial for a product we designed (El Famous Hott Burrito) she was the person who helped me get cleaned off when a bucket of water was dumped on me for the commercial. The burrito was hot, you see. Hence the WATER to cool me down. We were obviously budding marketing geniuses.

I ran into her again in high school when we had study hall together and we used to sit in the back row and gossip while everyone else actually studied. A couple of months later, we started riding to school together and we’d hold contests like: Who can smoke the most cigarettes on the way to school? And how can we avoid getting detention for being late AGAIN?

Of course I was thrilled when we had our first period government class together our senior year in high school. I remember that I had a particularly rough morning and Caroline gave me the advice to get up earlier, eat some grapefruit and relax while listening to my Grateful Dead albums. Always the hippie, Caroline was.

She decided that I needed some more Vitamin C in the morning. And it helped: not being much of a morning person, I found they were more tolerable this way. This became my new tradition.

After graduation, we lost touch, as usually happens when people go opposite directions. She was staying around to work and I was headed to Loyola in Chicago.

In the winter of 1999, I got a frantic phone call from my friend Stef. She was in complete hysterics, sobbing to the point of being incoherent. Once she calmed down, she told me the news:

Caroline had been killed earlier in the week.

She’d been in the shower at her mom’s place when her stepfather tried to force the door open, presumably to force himself on her. When she put up a fight, he went into the kitchen and grabbed a knife. He came back and broke the door down.

The coroner stopped counting the stab wounds at 100.

She was 19 years old.

My friend Caroline was laid to rest in a closed casket ceremony.

She’s gone now, and I still can’t believe it.

Every time I hear “China Cat Sunflower” or “Ramble On Rose” or smell the fresh scent of citrus, though, I can feel her around me and I smile. Because she would have wanted me to.