Last week after sprinting jauntily to the mailbox to see if I’d finally won that bazillion dollars I keep hearing about (a Nigerian Prince TOLD ME SO), when I found a pile of junk mail. After sorting through it, I realized that I had one piece that was not junk. From the county. Dreading anything I ever get from the county (on principal, not because they send me Nasty-Grams. DOWN WITH THE MAN!!), I tore into it.

It was a referral for Amelia to Early Interventions.

This wasn’t the first time I’d seen this paper (the name of the child was different, of course) and for some reason it smacked me blind. It’s SO not the end of the world to have a kid that needs some therapy. Shit, she’s in decent shape, by comparison (and by comparison, I mean NOT DEAD. Because this kills a lot of kids), and I really need to get the fcuk over myself.

I guess I’d just been in denial the whole time. Like going through the day to day motions with all that goes on in my Circus of a House, without thinking, honestly THINKING about what a diagnosis of encephalocele really means. I am, apparently, the only one who thinks this way because I called The Daver at work that day in a mild panic:

(ring ring)

“Hello?”

“OHMYGOD DAVER, OHMYGOD.”

“Uh…what?” (he knows better than to really worry when I call in a panic)

“Amelia….got her referral to Early Intervention,” I waited to hear him freak out.

“….” Typing sounds in the background.

“…and?”

I sighed deeply before we hung up. Apparently, I am the only one who is bothered by this. Figures.

I need to put on my big girl panties and just call for the appointments and evaluations, I know I do. Well, okay, I’ll tell YOU Internet, but let’s keep it between us, okay? I actually DID call. And then I promptly hung up when someone answered. Maturity has never been my strong suit, you know?

So I will do what I always do! Distract you with pictures! Because what else can I do? AND WHO DOESN’T LIKE PICTURES?

The Devil doesn’t. I swear.

I know that I post more pictures of my younger kids and while that would make it appear that I am favoring them, I assure you that it’s not.

This, this picture is Ben, In Real Life. Always in motion.

And this is my second born, Alex:

Playing with bath crayons. Outside the bath. Because he is that kind of kid. (what the fuck ever that means)

Daver was sick a couple of weeks ago with the flu–influenza I mean–and slept pretty much 24 by 7 for a week. While I am normally annoyed by him and his irritating and incredibly dramatical Man Colds, my cold, mean heart felt sorry for him.

MAYBE IT WAS THE SWINE FLU!! OH EM GEE!! (note the 2 exclamation points which should illustrate just HOW emphatically emotional I was being) Actually, I think it might have been.

And lastly, Amelia says, “You moron. It wasn’t the fucking swine flu.”

When Amelia gets Hulk SMASH! Baby she has developed an incredible way of getting what she wants. She lets loose a fart or two that literally blinds me with it’s suffocating garbage-dump-like smell. Then she smiles broadly as I hand her the keys to my car and my Amex Gold Card.

Clever kid.

What is your superpower?

It’s been brought to my attention by the letters O, C, and D that I have posted a decided lack of pictures since my new wordpress upgrade fails to allow me to scale my pictures appropriately. But, in the name of Rotavirus, I will say “eff THAT shit” and post it anyway.

Easter has long been one of my favorite holidays, in spite of the fact that April always seems to be An Asshole of a month (February is always the worst, though). I love it anyway, and I’m ever-optimistic that This Year Will Be Better. It never is, but my glaring stupidity and utter inability to learn from past experiences allows me to become excited about it every year, like clockwork.

This year was no different. I was hopeful and happy to be hosting my annual Easter Brunch. Then, the stomach flu hit us and suddenly, I was not so happy.

You might even say that I was UN-happy.

See, now, this was what Daver and I did on Easter Eve: we filled a fucking ton of small eggs with the sorts of candy that my grubby hands will leave alone. Like jelly beans *shudder, shudder.*

Also: we drink heavily.

And we mock the fact that I routinely forget that I’ve already bought stuff for (insert holiday here) and I buy more. Until it looks like I might, perhaps, have a soccer team of children. Which I assure you will never grace my uterus.

The following morning however, the joke was on us. Because my eldest had gotten sick during the night yet again, we had to postpone the Easter Egg hunt. So now I have a fucking ridiculous ton of small eggs in a bag in my closet simply waiting for the Right Time For A Hunt.

Or maybe I’ll just throw them back in my Easter Bin in the basement for next year. It’s not like anyone actually EATS the candy.

Then, the oven I needed to cook the delicious (pre-packaged) morsels of goodness (read: cinnamon rolls) simply refused to turn on. Fucking asshole oven. I will punch that bitch in the face.

So, then Ben was off with his father rather than force him to sit around and watch other people eat the deliciousness that is my Easter Brunch. That somehow seemed crueler to me than merely sending him off. He was happy, I should rightly add, to go.

We were down a kid, sadly, the one that was most excited about Easter.

This is a stock photo, taken on Tuesday of last week, because I had no desire to document for posterity the barfiness that was poor Benny.

My middle son, he was just thrilled by a ball. The eggs, the baskets, the candy, they were stupid and boring. Especially compared to a big red ball.

And my wee daughter, she would simply like to tell The Internet that her mother is both cruel AND unusual. Why else would she be forced to wear this?

Or one of those Head Garters everyone hates?

Ah, the therapy they will all need.

When I showed up to the pediatric transplant unit for my first day of clinicals, it was mercifully dark and quiet, the nurses flitting purposefully about as stealthily as they could. The only sounds I could make out beyond the steady mechanical hum found on any hospital unit were the occasional IV beeping, signifying, perhaps, an occlusion in the line or that a bag of fluids was now emptied. It was quieter than any unit I’d ever been on before.

Reds and blues and bright yellows lined the hallway and I noted cheerful balloons painted on the walls as I thought to myself, how wonderfully non-clinical it all looked. How perfectly child-like. It seemed only fair that if a kid were sick enough to have to be in the hospital, at the very least, they could feel at home.

I spied a television with a DVD player and PlayStation stashed in a corner, and marveled at how this hospital really had been designed with children in mind. The unit fridge was stocked with puddings and chocolate milk and chips and graham crackers; all stuff my own two-year old would have happily eaten. I felt as though I might actually be in some sort of elaborate daycare facility rather than a major children’s hospital. There was even a McDonald’s in the basement.

It wasn’t until I got my first assignment -a baby; severe liver failure- and saw that my one-year old patient was the size of a three-month old that these children weren’t having much fun. These kids weren’t on vacation. They weren’t at daycare. They were sick as hell. Some were well on their way to dying.

And still, even as these children died, life went on outside.

People bustled by on the streets, knowing, perhaps, the name of the hospital and the types of patients, but never knowing that fear. The fear that lives in your gut once something horrible happens to you and you know how in the cosmic scheme of things, there is no “fair.” They’d never know how terrible it is to listen to children -innocent children- in pain. These people would never have to voluntarily inflict pain upon their own flesh, their own blood, because sometimes life deals you a wild card, and you do the best you can.

They’d never know about the secret places in the hospitals, the PICU’s; the NICU’s where small, but real lives routinely hung in the balance. Where cosmic scales made absolutely no sense. Where kids lived and where they died.

This secret place, the land of tears.

When they’d think of hospitals, they’d think of the places where old people went when they were ill. Where your appendix or a foot or two of colon would be removed and you’d go home. Cured. Where you’d splint your broken arm, x-ray a broken leg, and bandage up that nasty gash on your finger. Where old people died.

Hospitals weren’t places for children. Because in a fair and just world, kids wouldn’t get sick and kids wouldn’t die.

Kids wouldn’t be born without brains, or with only part of their brains, or born too early, too soon to live. Babies wouldn’t be born still. Kids wouldn’t need dialysis or organ transplants. No kid should have to know the torture of chemotherapy. No parent should have to send their kid to the morgue. No family should have to plan a funeral for a child.

Death, dying; transplants and cancer, those are things that should affect the old, the people who had loved and lost, married and had their families, kids, grandkids; people who had lived.

—————–

My universe is less random than I once thought it to be.

When I birthed my sick daughter, Amelia, it just so happened to be where the very same children’s hospital where I’d previously worked had just opened up a satellite unit. At three weeks of age, she underwent neurosurgery, and for the second time in her life, she became a patient there. First in the NICU, then the PICU.

The monitors blipped intermittently for my daughter, gown bearing the same logo I’d seen so many times before, when her heart rate dipped or she’d forget to breathe and watching them, I’d shake her tiny feet, whispering breathe, baby, breathe into her pink shell of an ear. And then she would inhale, those glorious oxygenating breaths filling her lungs as the monitors would once again blip normal vitals. The alarms would stop shrilly alarming and yet another crisis would wink at us in the rearview mirror as it passed.

Her father and I signed furtively in and out of the NICU, then PICU after we were buzzed in by some unseen, nameless, faceless person into a locked, secret unit; mere ghosts of ourselves. We’d drift in and out for the tenth or sixtieth cup of coffee to keep ourselves awake and functioning, getting gluey food from the cafeteria to put into our mouths and chew, never tasting it. Sometimes, our paths would converge with other shells of parents. We’d smile knowingly as we passed; the kinds of smiles you smile without any trace of joy. Those commiserative, “you too, eh? Well, FUCK,” smiles, not the, “hey, friend, how are you?” kinds.

We learned later that we were the lucky ones. The ones that were buzzed out of this unit with our daughter in her carseat, strapped tightly in and screaming her head off.

The unit of sadness, of broken dreams and tears. Laughter and heartache.

This secret place, the land of tears.

After Amelia was born and it was determined that there was some sort of issue with her head and brain (bright spots, although excellent on jewelry–think diamonds–are not something, apparently, you want to see on an MRI), I could barely watch that commercial with Alec Baldwin and the brain. Nor could I watch House, MD without having to avert my eyes whenever the picture of the brain came up in the credits.

Neurotic much?

Why yes, yes I was neurotic. I was probably as bat-shit crazy as I’ll ever be (God willing) and there’s a small part of me that feels as though I should be apologetic for it. Things did, after all, turn out as well as they could, especially considering the diagnosis.

But I’m not sorry. Not even remotely. Since I hadn’t thought there was an actual encephalocele, I’d actually prepared myself for a better Worst Case scenario than. Which means I wasn’t nearly as neurotic as I could have been. How frightening is THAT?

Besides, from the moment she was born, no one told us jack SHIT about anything. It was kind of remarkable, just how little information the hospital and it’s employees would divulge. I probably could have learned more from the lady who cleaned my bathroom than I did from all of the nurses and doctors. COMBINED. My friends who have been there will know if that’s standard or not, but damn, how powerless did we feel?

Moving right ahead, now that my neuroses have been well documented yet again. (If that’s not the purpose of blogging, I don’t know what is)

Amelia turned a whopping 2 months old on the 28th of March and we celebrated, perhaps a bit belatedly, by going to back-to-back doctors appointments. Lucky girl!

Before we went to her pediatrician yesterday, I had a rare couple of quiet minutes wherein I waxed eloquent (If Aunt Becky waxes eloquent and no one is around to hear it…? Did it happen?) about how relieved I am that this is my last child. With my other two, even with Ben’s autism, I was much more laid back and relaxed.

So what if Ben ate from exactly one food group (White Food, for those who wonder)? Who cares if Alex didn’t walk until 16 months? That rash on his ass? Slap some Vaseline on it and call it a damn morning.

But suddenly, after Amelia was born and the threat of her developing abnormally was a Front and Center Issue, I consistently noticed things about her. Wait, she’s rolling her eyes into the back of her head as she sleeps, IS THAT A SEIZURE? Oh my GOD, what is WRONG with her hard and soft palate? IT LOOKS WEIRD.

From neurotic to MORE neurotic, I quickly went.

Until yesterday, when I went to the ped with her and I had an epiphany (ala Arby’s = RB’s = Roast Beef! What? I never claimed my epiphanies were bright.). My daughter seemed…normal. Completely normal. She eats well, has regular craptastrophies wherein several items of clothing are damaged, smiles when she’s happy, pouts and screams when she’s mad, and acts just like a…baby.

MY baby.

Maybe she’ll never join MENSA (to be fair, they’ve certainly never beat down MY door either), maybe she’ll have as hard a time with fractions as her dear old mother does, and maybe she’ll never be known as a Brilliant Mind.

Say it with me now: So. Fucking. What?

Today, at her follow up with with her neuro (F/U in medical lingo. Which always brought me much satisfaction to see in a chart when I was an actual nurse because I am very, very mature) she was discharged from the neurologist who told us that we’d see him in the next lifetime. Which may be entirely too soon for me.

Next week, we’ll be visited by the county health nurse who will follow Amelia for the next two years to determine if she’s meeting all of her milestones. We’re also being followed by the University of Illinois. Apparently her diagnosis is not only rare, but totally interesting!

And they’ll probably find something, because if you look for something long enough, you’re bound to find something or another wrong. But I don’t care.

Normality is totally overrated.

*While my daughter is proving herself to be an excellent sleeper–by which I mean she’s only up 2-3 times a night versus her brother at that age who was up 5-274 times–my darling middle son is making up for all that sleep I’d be getting by refusing to sleep in.

*The plus side to sleep deprivation is that it makes me almost calm. No longer am I annoyed by the constant watching of Wow, Wow Wubzy DVD’s or my 7 year olds smart mouth (please tell me this is an age/stage thing? PLEASE?). No. Now I am downright placid. Serene, even.

*Just spent my kid’s college fund on buying a swing set for the backyard. One of those that will probably take up most of my backyard. My neighbors will thank me, I’m sure. It’ll make the party on APRIL 19th even cooler, right? (the keg will help, I’m sure)

*For the past week and a half, Alex has woken up from his nap hysterical (Back story: kid takes one 45 minute nap a day. Period) where even the promise of his beloved chocolate doesn’t help him get through it (because bribery = awesome parenting!). He screams and he cries and nothing helps and I feel just horrible for the hour or so that it goes on. I don’t know what to do.

*Rather than find someone to come to my house and watch Alex in the mornings for me so that I can listen to him whine for me from the other room, we started him in some in-home daycare for three hours a day. While he wasn’t thrilled initially, he now loves it.

*Thanks in no small part to the in-home daycare, we are all now sick with the first of many, many colds.

*Although I see a multitude of doctors (no, I do not have Munchausen’s. Just crap-matic genes**) my favorite waiting room is at my endocrinologist. There is no better place to people watch than this waiting room, I’m convinced. It’s like watching animals in the zoo. I’m also pretty sure that this means that people are probably looking at me while I sit there and thinking the same thing. Sweet ass.

*I’ve stopped swearing as much as I did before. This is kind of making me feel not only old, but lame. On the upside, though, Ben has stopped yelling “DAMNIT!” when he drops things.

*I spent some time yesterday in my garden for the first time since I was very slightly pregnant with Amelia and I have a special piece of advice for you: after tying up your climbing roses to a trellis and receiving more than a few pokes in the process, it is not wise to then go inside and douse your hands with alcohol-based hand sanitizer.

*If possible, tie up your climbing roses the winter BEFORE. I was too big to do so last year and I’m seriously paying for it now. Also: my roses can kick your roses ass. They’re unreal.

*Why yes, I do garden.

*Why no, I am not an old woman. I will be 29 in July. SHUT UP, THAT IS NOT OLD.

*Chalked up to the I’m So Suburban It Hurts category, The Daver and I are seriously considering buying a mini-van. Because yeah. Trying to cram 3 kids in my CR-V is laughable at best and futile at worst. Anything I should know (besides the fact that I am suddenly even lamer than lame when I buy one.)?

*How flipping cool would it be to put flames on my mini-van? Don’t answer that one.

*Another word to the wise: STEP AWAY FROM THE SCALE. IT WILL ONLY DEPRESS YOU. Also: I SO need to go on a diet.

*My daughter, oh she of the cradle cap and acne, will only fall asleep while someone holds her. Normal people might be annoyed by this as it takes a good long while and often makes your arms fall asleep. But after dealing with Alex’s sleep issues, this seems like a cinch. Perspective, it is invaluable.

——————-

So, Internet, what’s on YOUR mind today? Spill your beans.

**I initially spelled this jeans.

Without further preamble, I present the back of my daughter’s head:

Fracking huuuge, isn’t it? But shit, it looks good and hopefully she won’t get female pattern baldness. Or if she does, she can wear some kicky wigs.

What’s that? You DIDN’T ask for an obligatory cute baby pic? Well, too bad.

This is the reason we can’t have nice things. I was being all good and stuff and ordering diapers online like an intelligent person would, right? Except I shouldn’t be allowed credit cards in my sleepless state because look at the size I bought FOR AMELIA. Who weighs MAYBE 9.5 pounds.

That’s right, I bought the size BETWEEN 1 and 2 rather than the size between Newborn and 1. They’re dwarfing her delicate butt.

All you can do is laugh, right? Because diapers, they don’t spoil.

NO MORE CANKLES, BITCHES!

That’s right! Since about a week postpartum, my feet have returned to their pre-pregnancy size and my cankles have been banish-ed! Hooray for no cankles!

Anything else you want me to answer?

The pictures, they speak for themselves:

AW! Lookit! Alex is FEEDING THE BABY! What an awesome big brother!

Oh, and there he goes, trying to pick out her eyeball.

Kids. I tell you.

—————–

To answer your burning questions, I present to you an abbreviated post! Hooray for small bits!

So, why the hell didn’t the doctor tell you about the encephalocele?

Honestly, I don’t know. I’m not sure if the whole litigation-happy climate made him wary of telling us anything before he knew for sure or not. I’m feeling much better about it today after being nearly bowled over by the news yesterday. Dave, predictably, handled it much better.

We went into surgery thinking that this was fluid-filled, which in retrospect, makes no sense so the news that there were actual glial cells inside that pocket was completely shocking to me. And it made me feel oogly inside.

Kinda creepy when you think about it.

Well, what does this mean for her development?

No clue. She appears to have all of her mental facilities intact, but she’s only 5 weeks old. The age when they sleep, poo and eat exclusively. So measuring milestones is an impossibility at this moment. She does eat, poo, sleep and wiggle which is a good sign. And when she looks at you, the lights appear to be on and someone appears to be home.

We have been flagged by the county (her diagnosis, not my shabby parenting) and will be followed by a public health nurse. That in addition to my own nursing experience ought to be able to ascertain any issues as they arise (or don’t. Let’s hope) and get her into proper treatment as needed. We’ve had much experience with Early Intervention, so I’m not scared of that.

We’ll handle it either way.

How are Alex and Ben adjusting to their sister?

Shockingly well, truth be told. Alex is a consummate Momma’s Boy and I was most afraid of how he’d take to having to share my attentions, but so far so good. Providence smiled upon us and we were able to enroll him in some in-home care 3 hours a day after my neighbor recommended her sitter. Who is awesome.

This seems to help.

A couple of months before Amelia was born, we’d bought another doll for Ben, who is nurturing it and loving it just the way he did with his first doll (bought when I was pregnant with Alex). Yes, my son plays with dolls and no, I don’t think that’s stupid. He may be a father some day and I want him to know that men can nurture as well. He’s loving having another sibling.

—————–

Anything else I failed to answer? My brain is mushy and stupid right now (okay. My brain is always mushy and stupid. I admit it.) so ask away.

Pathology report is in and stitches are out.

Turns out that I was wrong all along.

It was an encephalocele. My daughter had part of her brain hanging out of her head. Thank God it’s over for now. We’ll know more as she does or does not reach her milestones.

Jesus.

I’ve never been so tired in my life.

When I was growing up and people other than me bought my clothes, my paternal grandmother would mark every special occasion with a new fancy party dress. Luckily for me, despite my mother’s best efforts, I remained a girly-girl and not the tomboy she wanted me to be, so the dresses were a smash hit. I remember the yards of ribbons, lace and itchy, yet beautiful netting underneath. I remember fondly the stockings and the patent leather shoes and feeling just beautiful when I wore it all.

I couldn’t wait to carry that tradition on with my own daughter.

Because I am a freak of nature, I decided to wait until my daughter was born (and therefore it was a bigger pain in the asshole to get away) to settle on her first dress, an Easter dress. Easter is one of my favorite times of year, one of the only times that Chicago-land weather stands a chance at being remotely temperate and not Ass Cold or Ass Hot.

(Why YES, those are technical terms! Didn’t you know I have a degree in meteorology? Because I totally don’t.)

But Amelia was born and she had a spot on the back of her head that reminded me every time that I saw it of a bad spot on an apple. You know, the rotted bit? Not exactly the mental picture you want when you have a new baby, trust me, I know.

And because at any given time, none of us knew what the hell was REALLY going on with her–was she going to live? Die? Turn into a Jonas Brother? NO ONE WOULD TELL US–until after her surgery, we were in a constant state of limbo. I hate to harp on this, really I do, because I know so many people who have had real problems with their offspring and while I know now that her surgery really was fake brain surgery (sort of. Kind of. It was still brain surgery) and not nearly as frightening as we’d been led to possibly perhaps maybe sort of believe, I didn’t back then.

(still waiting on that pathology report. Want that pathology report)

So the things that comforted me while she still had her rotten spot were few and far between and I spent those four weeks alternating between Freaking The Fuck Out A Lot <---> Freaking The Fuck Out A Weensy Bit Less Than A Lot. Had this brain surgery been STAT, while it would have sucked for a couple of days, it was nothing compared to sitting around and wondering and waiting and not getting any answers. Because that, my internet lovers, sucks more.

I had, in no particular order, these things to comfort me: my friends in the computer, white cupcakes, Valium, and my word search books (shut up. I am not an old woman). The most important thing, though, was imagining a life post surgery, something I didn’t really want to do often lest I jinx it and kill her by thinking positively. Yes, it was magical thinking, and no, I couldn’t stop it no matter how berserk it sounds.

But I’d imagine two things: shopping for an Easter dress and bonnet for my daughter and planning her debut party.

And yesterday, the Gods smiled upon me.

Because there is this:

And something like this:

(Not, obviously, the same cake. This was Alex’s first birthday cake which neatly shows my cake fetish. And we are rapidly approaching Alex’s second birthday. Which is going to happily coincide with Amelia’s Debut Party. April 19, party people. Save the mother-humping date!)

It’s going to be one hell of a celebration.

———————

Oh, and I must add, while I thank you for all of your kind comments about the picture of me in that post, that is another old picture. Because I am still about 25-30 pounds up from that and am horrified by pictures of myself, I refuse to show you what I look like today. BECAUSE WHAT WOULD HAPPEN IF THE INTERNET DIDN’T FIND ME SEXXY?