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.

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.

So here’s the button should you want to vote for me. Should you NOT want to vote, I dig that too. It’s a simple process, hand to God.

I am also up for the other two Bloggers Choice Awards displayed so kindly on my sidebar, and should you want to go through the annoying registration, I would be most thrilled. If only so that I could beat Dooce, who wins everything.

I also wanted to let you know that–should you want to be bored stiff–I am on Facebook as I am a lemming. A stupid, stupid lemming. My full name is at the bottom of your screen. We should SO be BFF.

I am also on Flickr AND Twitter. Because of the aforementioned lemmingness.

————-

Okay, so that top shit was written this morning when I was anxiously awaiting the Early Intervention people.

Dave and I handle adverse situations differently. While I am busy wringing my hands and preparing myself for the worst possible outcome, he calmly expects the best of any given situation. I’m not exactly Chicken Little, instead I’m his cousin, Aunt Chicken The-Sky-Might-Fall-Soon-Better-Prepare-Now and while I do appreciate Daver’s rose colored glasses, honestly my way has proved to be more useful for me.

Neither way is either wrong or right.

Amelia had her meeting with the therapists this afternoon, and all week I’ve had a sort of heavy-rock-in-my-guts type feeling. Not because, you see, I was terribly concerned about what they would find–shocking, I know–but because, I guess, I didn’t know what was going to happen. Which to me is worse than the bad outcomes. Dave, on the other hand, was optimistic and unconcerned.

Today, I have to eat my words (with a side of fava beans): Amelia, it has been determined, is (so far) normal. Completely meeting her milestones, ripping ass and taking names. The therapists will be back in a couple months to reevaluate, because her diagnosis is an automatic qualifier for the program, but so far, she’s spectacularly…normal.

I’m so beyond thrilled that I’m in shock. Tonight, the champagne will flow freely, but today, I will simply gape, slack-jawed at my daughter. My principessa.

I’m not worthy.

I’m in the running for Funniest Blog and while I won’t win, I will hassle you to vote for me. Because you can vote daily and that rules the school.

——————

As part of the requirement to get into nursing school (other requirements at my school included: a general bad attitude and the disregard for others), I had to enroll–and pass–Anatomy and Physiology I and II. And as part of A & P I and II, we had a weekly lab practicum. In addition to a nifty cadaver and an actual skeleton (now they are often made of hard plastic), my professor had somehow acquired a brain.

Now and again, he’d pull it out and leave it on the front lab bench. It would float there in it’s glass house, suspended in a clear yellow liquid almost as though it were another member of the class, nodding along. Because my professor had a great sense of humor, he’d labeled it years before with a fading sticker that read: “Abby Matter.”

It was a nerdy Young Frankenstein joke, he explained when I asked, wondering if the name was of the brain’s previous owner.

So to pay tribute to him, I have begun the process of labeling all the entries that involve me whining about Amelia’s encephalocele “Abby Matter.”

In a valiant effort to distract myself from myself, I tried my daughter on solids this morning now that she is the same age as my son’s were when they tried solids for the first time. I was sad to note that the formula, unlike breast milk, does not digest those simple carbohydrates the same way, so the longer it sat, the more it stayed the same.

Amelia was…not thrilled by the idea. Maybe she was picking up on the grimace I was no doubt making as I tried to feed her the paste-like rice cereal, maybe she just has better sensibilities than her brothers, but she was less than thrilled by the entire experience.

What I have not been talking about, though, is that Amelia’s Early Intervention interview with the therapists begins on Friday afternoon. I am less than thrilled by this idea, even though I keep reminding myself over and over than so many kids have problems so much greater than hers and that I should just shut the fuck up.

The marked rigidity of her limbs could just be a further sign of her awesomeness and her readiness to take on the world, but I’ll admit to you, Internet, that my heart breaks a little every time I see the strange Frankenstein way she uses her arms sometimes. Is this something? Is this nothing?

I’m just not sure.

I’m just not sure.

When my eldest child was 2, he was referred by an Asshole Pediatrician (do I sense a common theme among my doctors or what?) to Early Interventions for speech therapy.

He wasn’t talking, you see, and that coupled with his incredible love for the planets–which, I should add, the MD didn’t know about–made for a strange child. It took a couple months for a case worker to be assigned and ages after that to get the initial evaluations done, because like any state program, the need is greater than the ability to provide services.

When he was finally tentatively diagnosed with autism, I will be completely honest, I was relieved. It sounds weird, to be thankful my child has a disability, but it was the first thing about him that made sense to me.

My son had been rejecting me since he was born and my heart was not only broken, it was smashed to bits by his second birthday. He loved my mother, yes, but not me. If I never came back home, I promise you, he’d not have cared.

Ben and Mommy (colon) It’s Complicated.

He didn’t care for me, and while I’d like to say that it was because he sensed that I was an asshole, his brother certainly (still) cannot get enough of me. At some point I finally realized that it’s him, not me, that has the problem. But parents, of course, always blame themselves and it took years for me to be able to see that.

Ben was in therapy for years, many times a week, both speech and occupational, and it helped. My life isn’t a Lifetime Movie, where I’m played by Tori Spelling and Ben is played by that cute kid that I kinda wanted to strangle from Jerry Maguire, so you know that things still aren’t exactly normal, but they’re more…manageable.

Ben and Mom (Colon) It’s Still Complicated.

—————

Today I owned up to my old demons and pushed the fucking denial aside and called to set up a caseworker for Amelia for Early Interventions.

I did it because it’s the right thing to do. Like it or not.

Maybe, like some of you suggested, her extra brain matter was just her Awesomeness being uncontainable in her skull. A sign of high intelligence. I like that explanation best, I think.

It’s the right thing to do. But that doesn’t mean I have to like it.

If you can believe it, Amelia will be 4 months old on the 28th. Which, holy shit, where the fcuk did time go? I guess the constant sleep deprivation which is constantly making me wonder what season it is again as I put on my gardening gloves is making me a wee bit spacey. Or perhaps I am just stupid. Doesn’t matter.

Today marks Visit 2 from the Home Heath Nurse. When we were in the NICU, Amelia’s diagnosis was flagged. Bolded, red flagged, signed, sealed and delivered. It seems as though every single department of the state knows about her encephalocele and I imagine when I go in for my driver’s license renewal in a (blessed) couple of years, I think the clerk will say “Oh YOUR daughter has the encephalocele!” If that gets me a better spot in the (wrong) line, well, then that will be the bright spot in this whole mess.

Developmentally, though, my daughter seems fine. I had a number of people tell me that the synapses in wee brain’s can regenerate much better than those of adults (which, yeah, duh, look at me. Obviously my synapses are dying left and right. Some might say it’s a direct result of my three kids and I would heartily agree).

It’s really easy to forget how serious her diagnosis was until I look at things like this:

Forgive the terrible quality of this picture. It was taken right before Amelia was taken back to surgery and right after the nurse had come in with a gown designed for probably a three or four year old. She apologized, saying that this was the smallest gown they had. Which really bothered me more than it should have.

And then I look at this:

I don’t have many pictures of Amelia’s encephalocele because I couldn’t bear to look at it without taking a couple of Xanax beforehand. But you can see the area where her brain was hanging out of her head pretty well on this handy MRI that I was given copies of.

Which. Yeah. Wigged me out. I don’t relish looking at spirally sections of my kids’ brain. As my mother would say, “I don’t know why NOT.” She’s a pistol, my mother.

This is what it looks like today, although the picture makes it look more muted and subdued than it is in the flesh. It’s VERY red and incredibly angry looking. I find that fitting.

She’s just like any other baby.

But…

The nurse was concerned by my daughter’s inability to travel in the car. See, now, both of my boys were assholes in the car, but as babies they were Assholes Period, so it didn’t make a difference what we were doing. Driving illicited the same unpleasant response as breathing.

Amelia, however, is an excellent baby. Sure, she has a temper and admirable lung strength (in addition to an iron clad will), but the times she spends honking each day is measured in minutes, not hours. Unless, of course, we go in the car.

The minute we start moving in the car, she screams. And I don’t mean some pansy-ass little whimpers, I mean full-on hollering. Like she’s in horrible pain. Having seen my daughter in incredible pain before, I know the sound. The swing we have moves her from side-to-side and doesn’t bother her, and we don’t do the stroller because I don’t know why we don’t. My kids all seem to hate the stroller.

(For someone who had her brain sliced and diced, she’s an awfully big crybaby when it comes to shots)

See, her encephalocele was in the parietal lobe of her brain, and among other things…

(hear that? That’s the sound of a zillion bored readers clicking away from here)

…it controls proprioception, which is a fancy word for the feeling of her body in space. No, not OUTER space, but the feeling that tells you, “Hey, you’re standing up” or alternately, “Hey, you’re NOT standing up.”

If your eyeballs just fuzed shut in boredom, I am sincerely sorry.

So it would make sense that the backwards movement in the car would bother her. We’ve been desperate enough to buy different car seats to try and see if that was the problem, we’ve driven quickly, we’ve driven slowly, nothing seems to help. Which means that we’re not effectively shut-in’s just as we’ve gotten Alex okay with the car. Figures.

But the nurse, she was concerned. Not about my shut-in status, because I’m pretty sure she’s here for my daughter and not for me. Unless, of course, she saw that I was turning my cats into bonsai kitties or building a shrine to Britney Spears (note to self: hide Britney shrine). Then I imagine she would be highly concerned.

So, it looks like it’s likely back to the neurologist with us. While this in and of itself isn’t a huge deal–save for the fact that he is an asshole and will probably make me cry –it’s discouraging and it’s a reminder that maybe we didn’t skate by problems as easily as we’d thought.

I don’t really have a clever or witty end to this post so I’ll distract you…

LOOK, A CUTE BABY PICTURE!!