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.

Now, you didn’t really think I had cured cancer, did you? If I had, my face would be plastered on pretty much every magazine cover, I’d have multiple bookings on Good Morning America and Larry King Live, and the world might award me a Nobel Prize. No, I haven’t quite cured cancer yet, but I’m pretty sure I will. In the words of my high school Guidance Counselor, Mr. Duffy, I just need to apply myself more.

Sure, I’ve applied myself to certain worthwhile pursuits, convinced of my own inherent genius without so much as a glance at the facts. Why, this one time I almost became an artist! A veritable child prodigy! Another time I nearly became a culinary genius, which, despite how they make it look on television is no easy pursuit. Sure, I’ve failed more times along the way than I can count; becoming a nurse instead of a doctor, having a child rather than a trained monkey butler, getting pregnant against all odds, facing the hurdles of autism and death, marrying a man in lieu of traveling the world while simultaneously curing both AIDS and poverty. And fatness. Don’t forget fatness.

But one of these days, I tell you, I’m going to finish curing cancer.

I just know it.

I know that print media is going the way of the condor, or so I keep being told, but to me there’s nothing better than a nice quiet morning and a newspaper to rifle through. Well, okay, there are a lot of better things than that, namely a “nice quiet morning,” but I digress. I just don’t find reading newspapers online as appealing.

Partially it’s the site design. It’s like being fucked in the eye with all the blinky-glary-picture stuff being thrust into my eyes, and partially because I am a crotchety old person who doesn’t quite like to navigate through the clunky pages. I find it far less appealing, but I suppose I’ll have to get used to it.

What fascinates me the most is not the articles–no–what I find amazing is the way that John (or Jane) Q. Public reacts to them. Because now most of the stories come complete with a nifty comment box. And we all know that comment boxes + anonymity = assbags.

Newspapers seem to bear a good deal of the burden of this, often bringing out the loud and the stupid (why do they so often go hand in hand?) (I say this ironically. I am, after all, the person that posts something nearly every day here), and I have a field day reading it. The infighting and the general moral superiority to all other commenters just makes me giggle, seriously, if you want a good laugh, grab a bag of popcorn and pop open the comments box at the end of an article.

So as not to elicit the hatorade from the particular article I was just plowing through, I’ll spare you the linkage. This particular article was followed by the commenters ripping into each other about the nefarious use of Tylenol in schools. Apparently–according to some–Tylenol is a fucking gateway drug. Bwahahahaha! No, seriously. Someone thinks this. Several someones.

(Completely unrelated, but related: if they do manage to ban Vicodin, I am moving to the moon)

Blogs get it too, of course, as you have no doubt noticed, although it seems more muted on one hand and more personal and horrible on the other. Less infighting and more personal attacks.

The more readers your blog gets, the more expectations are placed upon the author. The greater the expectations, the greater the let down when the blogger has a particularly bad day or bad week and isn’t writing up to par. This is one of many things–like how a simple non-platinum coated front door can cost hundreds of dollars–I don’t understand.

Okay, I get the part where no one likes a whiny, cry-baby, because shit people, you may be complaining about your cock-bag ex-boyfriend while other people in the world don’t have access to clean drinking water! Or adequate health care! How dare you complain when some people have no legs! NO LEGS, Aunt Becky, you horrible bitch!

Perhaps they do not know I find “bitch” to be a term of endearment.

Before you accuse me of moral superiority (which, hahahaha! Just TRY and make that charge stick), trust me when I tell you that I have read posts on a couple different bigger blogs that have made me see red. It’s all I can do to not scroll down to the nifty comment box and pop in some awful, trite, I’m going to come here and rip you a new poo hole because you fucking suck crap. I’ve always managed to stop myself, close the window out and carefully unsubscribe.

The Internet needs more hatorade like I need someone to drill into my skull and pour cherry Jello inside. I mean, what does coming over to spew nastiness about actually accomplish? A feeling of moral superiority? You want moral superiority, go turn on Maury. Or Jerry Springer. Trust me, a half an hour of that should make you feel like a king among men. You’ll be patting yourself on the back for your decided lack of recessive genes and your amazingly normal family for weeks.

As bloggers, we put ourselves out there and invite you in to come see what we have to say. We dust off the Welcome Mat and offer you a tasty beverage while complimenting how amazing your ass looks in those pants (have you lost weight? You look amazing!). But do we have a right to be angry when you spit in our lemonade and throw eggs at our door?

Considering you get exactly what you pay for when you click to a new blog (think a sea of gigantic zeros as far as the eye can see), do you have a right to be cruel when you don’t get what you want? Or what you think you deserve?

I’m asking you, honestly. My friend Trish wrote this about authors handling negative reviews, and I’ve been rolling this around in my brain since then. How should bloggers handle it presuming a) they are not making money from said blog and b) they hadn’t asked for the negativity?

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.

One of the things I am terrible at, besides, of course, flagrant overuse of commas, jumping in and out of tenses like it was my job (ed note: it is not my job), Misusing Capitol Letters, and generally making people uncomfortable with the assumed familiarity that a nickname like “Aunt Becky” brings, is updating my loyal Internet Army about things I’d previously whined about.

It’s not that I don’t HAVE updates or think to tell you of them, it’s just that without collecting several things to update you about at once, the post becomes even more boring than normal. If my blog reads “and then (dot, dot, dot) and then (dot, dot, dot)” even I become irritated.

—————–

The Internet was both shocked and appalled that someone who has Crohn’s disease (or maybe NOT Crohn’s disease) would try a weight loss drug like Alli. And I was shocked and appalled that after cutting out butter as a food group, the scale zoomed up 12 pounds. Seemed mighty suspicious.

(my scale is broken)

But, because I’d tried Weight Watchers and found it to be too much work for someone barely sleeping and barely able to cook–thanks to a certain squally infant (read: The Daver)–I decided to go with Alli. Against the better judgement of many of my closest friends in the computer. Alli trumped a tapeworm (and since regular diet and exercise wasn’t cutting it), so I took my first pill with great trepidation.

I sat there at my computer for the first couple of hours, waiting for the butt-butter to liberally pour out of me. My diet wasn’t terrible to begin with–shockingly, I look as though I polish of boxes of Little Debbie every night–but everywhere I went I was told to not wear white pants (Thankfully for eyeballs everywhere, I do not own white pants), wear a panty-liner and to watch out for flatulence with particulate matter.

Terribly anticlimactic for me when absolutely nothing at all happened.

Save for this: I awoke the following morning–mornings are notoriously bad for my guts around these here parts–and waited for the spew, the pain and the cramping (this happens without Alli). It was only when I felt absolutely no pain whatsoever that I realized that I really HAD been in constant serious pain before this.

Day after day, I hesitantly popped the blue pill–waiting for the inevitable agony–and noticed that for the first time in many years, my guts felt oddly normal. Not like they were trying to eject themselves from my body cavity through my belly-button or like they were imploding. I’d never found anything–even Demerol–that controlled the pain I was in, I just sucked it up and dealt with it. Because what else CAN you do? Chronic pain is chronic pain and you get used to it.

So the drug that was supposed to induce terrible cramping, diarrhea and seepage made me…better. I swear on a stack of Bibles that I have never been more baffled.

I will admit before you, o! Internet, that I have indulged in some fattier meals and paid the price. The price was shockingly low, truth be told, and I’m not sure if it’s my particular GI anatomy or that I’m used to this pain, but I did pay. The oil, if you read in the wise comments I got on those posts, I should tell you, comes out of your body looking just like…oil. Neither here nor there, honestly, but sort of amusing.

I haven’t shat myself, ruined any pants (white or otherwise), and I’m not exactly sure if I’m seeing results. Like I said, my scale is broken, and I stupidly stepped on it a week or so ago while very bloated and noticed I’d gained a pound and a half. I moped about for awhile afterward and vowed to get the hell off the scale. It does me no good.

So there you have it. I am pretty pleased with it but cannot honestly tell you if I have seen results. I have no desire to be a slave to my scale, and I know soon enough my body will realize that it doesn’t desperately need my fat stores to feed a baby or nourish a fetus. Time will tell.

——————–

Earlier this week, my agents schlepped off my book proposal to the first round of publishers in the first of many months of “hurry up -n- wait.” The beauty of agents is this: not only do they know what to do, you aren’t rejected YOURSELF. I am not subjected to the “You suck ass” rejection emails, and the few rejections I have been sent (by my agents) have been ridiculously flattering.

I realize I sound not terribly excited and I know that’s weird, but like I said, I won’t hear anything for MONTHS. I’d much rather be excited about my new site design or this fantastic bottle of blueberry flavored vodka Daver bought me.

Another one of those “time will tell,” “laughter heals all wounds” stupid platitudely bullshitty statements that serve to annoy most people.

Like me.

—————-

Thanks to your votes, I made it into the top 5 Funniest Blogs, a title I know full well that I do not deserve. But I’m ridiculously flattered that I made it there and from here on out, the top 2 will be determined by a stealthy secret panel of judges. Actually, they’re not stealthy at all, they’re listed on the site somewhere, but I don’t read fine print and besides, what does it matter who these people are?

Cake Wrecks will somehow no doubt win both spots.

(I am super pumped to go through those posts and remove my pleas to you to vote for me. Because I felt like a total assbag begging you. Shit, I *still* feel like an assbag)

———————-

Amelia is still working on rolling over which means one of two things:

1) She gets flipped onto her belly and becomes furious and indignant about it

B) She isn’t sleeping because all she wants to do is “roll, roll, roll.” Indignantly. She is obviously my child.

Her scar, rather than shrink like everyone seemed to think it would–which, in hindsight, makes very little sense to me–is expanding rapidly towards her forehead. I am no longer sure the hair in the back will easily cover it, but this is okay. Hats, oh hats, they will become our friend.

Although my brother seems to think that a scorpion tattoo would be even cooler.

The stretching of said scar has shown that I was correct: there is another fucking stitch back there to be removed. Awesome. Even creepier is that you can now see her skull implants. Which, yeah.

Anyway, before someone pipes up with, “AT LEAST SHE HAS FEET! HOW DARE YOU COMPLAIN WHEN THERE ARE PEOPLE WITHOUT FEET!!!” I’ll end this post with an adorable baby picture.

Maybe green and sparkly won’t be her first choice in headgear. Can’t win them all.

It must have been December or maybe January as we inexplicably when I cradled my arms around my rolly-polly belly and said tearfully to The Daver words I would yearn to eat later.

“I just” *sniff, snort, hiccup* “I just want him to love me best.”

(there is, of course, a reason for this. Autistic kids, The Internet informed me, are sometimes like Siamese Cats. They choose a person and that is Their Person. Everyone else doesn’t matter. Ben chose several people, of whom I am not #1.)

(can you blame him?)

It was a prophetic choice of words, and it made me wish that maybe if I said things like, “I just want to poo off 60 pounds this morning” or “I just want to have an unlimited supply of Diet Coke,” it would magically come true. Suddenly I would awake one morning as a swim-suit model, chugging gallons of Diet Coke.

Sadly no, but do any of you remember the Monkey Paw story? Based on the blank looks I get when I reference it, I’ll give you a brief overview: this magical monkey paw was given to a couple who had recently lost their son, with it, they could make three wishes. But because I don’t read the fine print, all I can remember is the wife, wishing their son would come back to life.

He does, but as you might expect of someone who had just been sleeping the eternal sleep, he wasn’t who he was. The moral, of course, is “be careful what you wish for.” Maybe I should have heeded this advice. It might have spared the waning fragments of my sanity.

But I said it, and I got my wish in spades. I’m sure, of course, this was merely magical thinking, but it worked. And my son was born a Momma’s Boy ™. He nursed every hour for 12 months, spent the first 11 months of his life waking up overnight 3-5 times, and recoiled in horror when anyone else dared to try and touch him. Including, of course, his poor father.

While it might sound perfectly lovely to some, and it was for awhile, I couldn’t go to the bathroom without him having a fit. When I say fit, I don’t mean a mild tantrum, I mean that he would scream, and cry and scream and cry the moment I left his line of sight until I’d come back to soothe him. I often considered making a cardboard cut out of myself to stand as a dummy so that I could possibly wash my hands in peace.

Maybe I should have.

Anyway.

The older he’s gotten, the more likely it is that he will take a shining to someone else. He’s very close with his father. He adores his older brother and sister. He loves my mother, his “Gummy.” Other people he likes, but can often be slightly reserved in their presence. It’s turned from something that made life intolerable after awhile into a mere quirk of his personality.

Alexander (whom we often call Jay) is just a Momma’s Boy ™.

This, of course, has taken a hilarious new turn.

Now, while Alex is awake, I am not able to hug or cuddle with either of the other men in my house. Amelia, he’s okay with but should Dave dare to wrap his guns around me, Alex is the Holy Ghost times twenty (somewhere, my MIL is smiling and she knows not why).

He’ll quickly run up and try and ensconce himself between our legs. Once there, he will try to peel us apart as though we were a gooey pair of stickers, and should we hesitate in breaking our embrace, he shrieks. And Alex’s screams could double as a dog whistle an eardrum rupturer. He’s THAT shrill and loud.

At first, thinking that he just wanted in on the lovin’, I’d swoop him up and squash him in. He’d wrap a spindly arm around me and use the other to push his father (or brother) away, yelling “NO DADA!” or “NO EWE!” (he calls Ben Ew. Which I think is “you” because we’ve never called anything “ew” before. But we don’t call Ben “you” either. I guess the moral of THAT story is that kids are just weird.).

Oh no, Alex doesn’t want ANYONE but he or his sister to lay a finger on his precious mother.

Because I know this is only a phase he’s going through, we all find it pretty funny and charming. I remember being a wee one and being entirely convinced that I would grow up to marry my uncle. Any ladyfriend he brought around after I made my mind up, I was immediately An Enemy. Didn’t matter how many times I was told that I couldn’t marry an uncle, I wouldn’t listen.

Nobody better lay a finger on my mother.

I just feel sorry for his future wife. There’s no way this can go well for her.

—————————

Now I have some business to attend to, but don’t worry. It’s not crazy boring. Only KIND of boring.

See, over on that sidebar is a page called “Link-a-Licious.” As you might deduct from the name, o! brilliant Internet sleuths that you are, that page is my blog-roll. It’s insane. It’s unruly. And it needs a hair cut and dye job, desperately.

So this is where YOU come in. Do you have a blog? Do you comment here? Do I know you? Do I WANT to know you? (I probably want to know you) Does your link work properly or have I completely messed it up? Leave me your link.

Also: I am on Facebook if you are so inclined to want to read more of my pointless shit. My name is at the bottom of the blog.

ALSO at the bottom of my blog, hidden neatly away there so that no one can find it (hello pointless!) is an RSS button, should you want to subscribe. Do not ask me what that means. All that I know is that this is a really fracking stupid place to put a button *grumble, grumble* and I cannot wait for my new design.

I am on Twitter! Because who isn’t? My name is “mommywantsvodka*” and we should totally be BFF!!! Triple exclamation points for triple the fun!

And how cool is this? I didn’t even pay her to write this.

Lastly, I need some prayers sent for a friend of mine. The details aren’t mine to share, so I won’t, but please PLEASE keep my friend in your prayers.

*My name is NOT “mommy wants vodka.” It is Becky Sherrick Harks.

In my brief period of working on The Floor(s) as a nurse, in addition to learning a zillion and one weird acronyms for such things as Follow-Up (F/U) and Shortness of Breath (SOB), I learned the term “Frequent Flyer.” Having only been vaguely aware of this term in regards to “miles” and “airfare” because I was a “poor college kid” and “didn’t travel much,” I was baffled when they referred to a patient as this during report (shift change).

Terrified of the seasoned nurses–you would be too-it took me awhile to muster up the courage to ask what the hell they’d been talking about. When I did, it was explained that Frequent Flyers were patients who were in and out of the hospital frequently.

Get it?

While I thought that a Punch Card Patient (buy 9 visits, get one free!!) was a bit funnier, it reminded me only of a kid I met in college. I’ll call him Ryan because that was his name.

Ryan was from a family of 4 boys–the original Sausage Factory–and these kids were, well, I guess the kindest way to put it is “accident prone,” but that gives you a nice mental picture of someone slipping benignly on ice in an “awe shucks, guys” kind of way. This was not Ryan’s family. As he explained it, these were the luckiest group of unlucky people on the planet. During a family ski vacation, one of his brother’s rolled his ski over another one of his brother’s hands at the top of a slope.

The result? A neatly severed finger, seeping blood into the white snow.

After fixing up said finger in the OR, his family was paid a nice visit from Children and Family Services. It seems as though the quickest way to get them on your ass (besides becoming a foster parent) is to install a revolving door through the ER. Shove through that 4 kids with rotating weird injuries, like broken ribs, missing fingers, busted heads, at semi-regular intervals and SMACK! BOOM! there you have it: you must be abusing your kids.

I can’t say with absolute authority that Ryan’s parents were NOT abusing their kids, but the laughter and general jollity he had about the situation led me to believe that no, this family was just luckily unlucky.

Because it is so often not my children that are involved with this, I’m fairly certain DCFS won’t be beating a path to my house to see how I caused cellulitis (Alex), respiratory issues (Ben) or an encephalocele (Amelia). This is obviously a stroke of genuine good luck, even with the steadily increasing severity of issues.

Between The Daver and I, we seemed to have amassed a stunning amount of stupid crap happening to us. Stuff that winds us up in the ER with various injuries.

(Bonus! Aside time! Sadly, of these probably 12-14 ER visits over the past 3 or so years, I have gotten my fist-full of exactly 11 Vicodin. Ever. Those 11 pills were easily the best part of my 27th birthday, and given to me at just the moment when July 14 waves goodbye to July 15, probably my best birthday present yet. Except the Cabbage Patch Doll that I got when I turned 4. But this is neither here nor there)

No, the list is boring and full of low-fat vanilla misfortunes. Nothing serious to warrant flowers, admissions (mostly) or even more than a simple, “Hey, I had to go the damn hospital last night. I hate hospitals” out of either of us. Corneal abrasion here, shoulder out of joint there, miscarriage here, Crohn’s issues there. No big deal. Stuff that could almost wait until the following day, when our regular doctor is open, except not so much.

If Ryan’s family was the luckiest set of unlucky people I know, my family would be the low-fat, low-sugar variety of that. Don’t get me wrong, I’m neither wishing things were worse or tempting fate here–I’ve had my share of Real Issues lately–but sometimes, you gotta take a step back from it all and have a good fucking laugh.

At least, that’s what I told myself when Dave gave himself what Twitter calls “Bagel Finger” this morning. Just as you’d imagine, he was recklessly cutting a bagel (obviously while saving a kitten from a burning building AND defending The Honor of his wife) when he miscalculated the amount of pressure he was exerting with his massive arms of steel (his guns, as I like to call them. Which, if you knew Dave, would make you laugh). Or he didn’t realize how sharp the knife was.

Either way, the morning slipped into afternoon with a bloody bagel and a busted finger.

As I drove him to the ER, the same ER we just took Alex to for his cellulitis not long ago (for the record, I am way too lazy to look up when this happened. But sources inside my head tell me it was “pretty recently”), I just had to laugh. Not meanly, no, I felt genuinely sorry for Dave, but just because this was becoming absurd.

I laughed, not unkindly, again as we walked out of the ER a scant hour later, Dave’s splinted finger jauntily reattached with some glue, catching the light with it’s shininess.

No, I laughed because no one would fucking believe it.