Abby Normal

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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.

surgery

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.

amelia-grace

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.

mimi-hat

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

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