For Crys

I sat there, glued to the end of the couch, holding onto my new baby like she was a life vest, the light from the end table next to me bathing us in a soft, yellow hue. There were other people around, although it was late in the evening. My sister in law? My mother? I can’t remember.

My sons, too, were around. Perhaps it was just the big one. The small one, based upon my memory, should have been in bed, although perhaps he was not.

Softly, I rubbed the top of my new girl’s head, breathing in that new baby smell. Each time my hand brushed that bump on the back of her head, that hard, fluid bump, the tears formed, my eyelashes grew heavy and I began to moan. I wept into her, so scared of the future. We’d been discharged from the NICU with very little beyond a scary diagnosis and a follow-up card for a neurologist who didn’t take our insurance.

The diagnosis was new, and I refused to use Dr. Google to make myself feel worse. I knew what a “posterior encephalocele” was. I just didn’t know how dire a diagnosis that was. Until later. Much, much later.

I’d bought myself some books – pre-nightmare – to read during those boring hours I planned to nurse my new baby. Word searches, books, and a potential maid service – all things I’d busied myself thinking about, feeling they were very important, until the doctor had said the words that forever changed me – “Becky, there’s something wrong with your baby’s head.”

Now it all seemed so stupid. Who gives a shit about spot-free mirrors when you’re not sure if your new baby will be celebrating a birthday?

But I could not bring myself to talk, to open up, to any of those around me. I knew it would be in vain – if I opened my mouth, I’d just begin to cry those awful, gut-wracking sobs anyway. Lord knows I didn’t need to cry any more – I could barely see through my shiny, swollen eye sockets.

Instead, I reached down into my thoughtfully packed hospital bag and pulled out a book. I’d bought two – a luxury considering I was about to have two under two – The Memory Keeper’s Daughter and Revolutionary Road. I had no way of knowing that these were not books that someone with a medically fragile baby should be reading (one is about a mother who delivers two babies, one with Down Syndrome, who is taken by a nurse and raised separately from her brother and the other about an unhappy housewife in the 1950′s who dies after attempting to give herself an abortion).

I had no way of knowing how horrifying my choices of book were, but there I had them. And I read them both.

In the quiet of that cold February night, I read them both.

It was the beginning of what I called The Middling Place. The space between learning how quickly your world can be turned on it’s head and learning how to live sideways. The space between diagnosis and reality.

The place where you wait.

The place where, in those quiet moments, your heart feels heavy in your chest, the demons and monsters threatening your every move. The Fear a permanent resident in the back of your own skull.

The Middling Place is a lonely place – a secret place, a land of tears, inhabited by you and you alone. Other people may drift nearby, stuck in their own Middling Place, but yours is a solitary land. Some moments, they’re filled with the purest of joy. Others with an unending sorrow.

It’s not always a bad place, The Middling Place, but in those quiet moments, the voice in your head reminds you of how fucked up this really is, your skin crawls and your guts threaten to expel themselves any way they can. You’ve tumbled down the rabbit hole, Alice, and why yes, I’d like a cup of tea – two lumps, no milk, if you please.

And you wait.

My parents were hippies. You know this. I know this. The guy down the block prolly knows it to, but I’m not asking him because HELLO AWKWARD.

That explanation alone probably explains why they would give me a concoction called, “Coffee, milk, sugar,” starting at age two. I delighted in this drink. I remember sitting at the table, feeling ever-so-grown-up drinking coffee out of a coffee mug JUST LIKE THE OLD PEOPLE DID.

I don’t recall spazzing out and running around like an asshole afterward, but it’s possible.

For Ben’s first Christmas in this house, which had to be (scratches head)(counts on fingers)(stares at wall)(guesses), pushing five, six years ago, I lovingly selected a very tiny coffee mug for him. It was a cheap old thing, but it was so wee and so darling and so motherfucking adorable that I nearly ovulated all over the chick next to me at Crate and Barrel.

I’m not sure what exactly I was thinking he’d do with it. My son, while he is many things, is not an adventurous sort. Milk makes him weep, he doesn’t understand the concept of hot chocolate (until his siblings pointed out how rad it is, I might add). He’s a water-on-the-rocks kinda kid. I respect that.

My daughter, on the other hand, is extremely adventurous.

She also has an obsession with coffee. Normally, she’ll pop up next to me as I’m slurping down the sweet, sweet nectar of the gods, and very coyly ask to dip her binkie in the coffee. If Daver’s not around to bitch at me, I let her. Why the fuck not?* You’re only two once. And coffee? Well, coffee is FOREVER.

A couple of days ago, I realized the downfall to letting her dip-dip her binkie in my coffee is this: she’s infecting me with plague. (I wouldn’t put it past her to dip her binkie in my coffee for that very purpose.)

So I dragged out that wee, adorable cuppy that I’d bought for Ben so many years ago. I ovulated all over the kitchen as I put a splash of coffee, a heaping amount of sugar, and a liberal amount of milk into it.

“There,” I said. “Mimi’s coffee.”

I’ve never seen her grin so largely.

And proving once again that she is, in fact, my daughter, she downed that motherfucker.

Then asked for seconds.

Atta girl, Mimi.

*not actually asking WHY NOT? I’m sure it’s not fabulous for her and frankly? I’m not too worried about a teaspoon of coffee.

Bobbing and weaving in time to the music in her head, she bounded over to me.

“Mama,” she smiled largely, the winning smile that I just know she’ll be using on her future dates. “I wanna watch more Tuff Puppy.”

“No Baby-Pants,” I laughed. “Not tonight. It’s bedtime.”

“Okay,” she stretched her smile as widely as she could. “Can we watch more Tuff Puppy on SUNDAY?”

“Sure,” I giggled at her inflection and emphasis. No one is gonna say no to this kid. “We can watch it on Sunday.”

“OKAY,” she broadcast to the whole house. “THANKS MAMA.”

She bobbed and wobbled off to get her diaper changed before bed.

I sat there, looking after her, bemused and amazed and more than a little bit teary.

It’s coming up on her third birthday. To think this tiny tot with an attitude the size of Texas was once the very same baby whose life I prayed for. Who’s head I wept into. Who’s tiny feet I once held onto like they were lifelines to a world in which no NICU’s, no PICU’s existed. It’s hard to reconcile that these are the same people.

Yet they are.

For her birthday this year, I will celebrate. I will buy a monster of a cake and we shall eat it, sharing it happily with anyone who can be bothered to brave the frigid January air. This year, we will celebrate.

And maybe, just maybe, I can let the ghosts of my past, who still haunt my present, be silent.

If only for a day.

Thank you to everyone who voted for me yesterday. I feel like a douchebag asking – trust me – but this would be so awesome for Band Back Together.

————

My children follow me around everywhere I go. I think they’re trying to ascertain what it is I’m going to do next, or at least, that’s what I tell myself when all three of them are crammed into my tiny bathroom, clamoring like a basket of wriggling puppies to sit on my lap as I pee. Or maybe they’re just trying to annoy me. Because really, who wants to yell, “ALEX GET YER ELBY-BONE OUTTA YER SISTER’S FACE” while peeing?

Not me.

My daughter is especially keen on following me around, yelling at me to do her bidding, because she’s two and that’s what two-year old’s do.

A couple of weeks ago, I’d wandered upstairs to look for a hot dog or get dressed or see if Rod Stewart was in my bedroom yet and, like a sassy puppy, my daughter followed me upstairs. Perhaps she, too, was wondering if Rod, The Bod, was in my bedroom.

I began to do whatever it was I was doing while Amelia spotted – in the corner – a bag. Not just any bag, mind you, a HELLO KITTY BAG. It had various office supplies in it, as I’m SLOWLY moving my office out of the dining room and upstairs (for better privacy to watch my cat videos) and I’d grabbed some things and hastily shoved them in what had been a birthday bag for me.

Mili, seeing the bag, immediately went nuts. Anything Hello Kitty is, by default, now hers, so before I could stop her, she dumped the contents of the bag out onto the floor, proclaiming, “DIS IS MILI’S HELLO KITTY BAG.”

Fair enough, kiddo. Fair enough.

While I had my back turned, the kid began to rifle through my jewelry box – a mixture of costume and fine jewelery – and delicately, she sifted through it. I remember that being one of my favorite things as a child – my mother’s jewelry box, not stealing my own crap – so I let her go through it, figuring she’d claim some of the more garish pieces as her own.

Nope.

Oh no.

No, my daughter carefully picked out the most expensive bits of jewelry and slowly placed each piece in the Hello Kitty bag. “Mimi’s necklace.” “Mimi’s ring.” “Mimi’s bracelet.”

When she’d thoroughly magpied my collection, she looked at me, smiled impishly, pulled the Hello Kitty bag up onto her shoulder like a purse, and walked happily out of my room and down the stairs. With my diamond collection.

She’s so her mother’s daughter.

It seems a lifetime ago that my daughter was born, pissed-the-fuck-off at the world with an ominous lump on the back of her head. That day changed us both.

Once shattered and broken on that hospital floor, I’ve slowly pieced myself back together, removing the bad bits and replacing them with good. Stitched up and mostly whole now, I’m not the person who waddled into that room and popped out a very sick daughter. That’s okay.

I begged her doctors, all of them, for something, anything, to hold onto while I schlepped my ill daughter from neurosurgeon to neurosurgeon and I heard the one thing patients abhor most: “we don’t know what this means for her,” followed by the kick-in-the-teeth, “time will tell.”

So we’ve been watchfully waiting from the sidelines, celebrating the victories while fretting the small things: Does that foot-drag mean she’s brain-damaged? How brain-damaged? Is that a seizure or is she just fucking with me?

I don’t know when you exhale. I don’t know how to accept, “it really IS okay.” Because those words nag at the back of my brain, my own untouched brain, just below the surface: “time will tell.”

Sometimes, I get angry, because it’s such a bullshit thing to do, wait for time to do anything. It’s always been there, “time telling” underneath all the milestones and victories, as I wonder what next.

Today, we finally got our answer.

Time, that fucking bastard, got off his ass and came to our Early Intervention meeting and opened his whore mouth and said, “Amelia is at or above level for everything. We see no reason to continue services.”

And for the first time in a long time, I exhaled as my daughter, the Princess of the Bells, led me into the future.

I saw it in his eyes – a brief glimpse of deep sorrow – before he began dictating to his nurse the clamps and implants he’d need to fix the encephalocele atop my daughter’s head. It was the same deep sorrow I saw in the eyes of every person in the waiting room at the neurosurgeon’s office realized that Amelia Harks was, in fact, not me, but a tiny baby in a carseat, no bigger than my arm.

In that brief moment, the neurosurgeon became human, not some arrogant doctor, about to saw into my daughter’s tiny head.

Now that tiny baby, no bigger than my arm, is a toddler with an attitude so reminiscent of my own that it’s hard for me to remember that they are one and the same.

As she grows, the scar does too. What once looked relatively small now encompasses much of head. Her curls, always in a halo, cover it, so I don’t receive the same sorrowful looks I once did. For that, I am grateful. For if I did, if I had to explain those turbulent first years of her life, I don’t know if I could stop the sobs.

People, well-meaning people, tell me the scar is “barely noticeable” that they can “hardly see it,” and I always thank them on her behalf. Inwardly, however, I wonder if they know how that hurts.

It would not matter to me if the scar somehow became invisible – although she might appreciate it some day – because it’s always there for me. The scar haunts me.

Most days, I am able to work through it, reminding myself that she, my warrior daughter, is here and that she is perfect – scars and all.

There are other days, though, that the limitless well of deep sorrow I once saw reflected in the neurosurgeon’s eyes, threatens to swallow me whole. The tears, hot and fast, course down my face and I am powerless.

I scoop that toddler, once a baby no bigger than my arm, up into my arms and I weep. Confused, she touches my tears with her tiny finger and asks, “Mama sad?”

“Yes, Baby,” I choke out. “Mama’s sad.”

And the three of them – flesh of my flesh, blood of my blood – climb atop me to squeeze the Sads out. It’s only then, with the pressure of three squirmy bodies on my chest, all elbows and knees now, that I finally feel whole again.

And I wonder, as they scamper down, screaming and chasing each other about the house, my tears drying to a hard crust on my face, the well of sorrow closing for the moment, how I got to be so lucky.

I came to the End of The Internet on Friday. I was searching for a laptop bag, right? And it turns out that laptop bags are the fugliest thing on the planet. Well, at least, the ones I could find.

Hence, the End of The Internet.

But I get all kinds of pissed off when I can’t find something that should be so simple, so I spent most of the day flopping around indignantly, occasionally shaking my fists at The Internet Gods, who had, for the first time, failed me.

After my daughter came home from preschool, she climbed up onto my indignant lap and demanded to look at what I’d been looking at. Which happened to be the kate spade website.

She and I spent a good while perusing ridiculously expensive purses, which, apparently, she, like her mother, is enamored by.

Eventually, she slithered off my frustrated lap and stood on her head on the floor next to me. Seeing a perfect opportunity to teach her some gymnastics, I rolled her over, helping her perform her first somersault. Delighted, she stood up, clapped her hands, yelled, “YAY!” and then begged me to do it again. So I did. We probably did twenty somersaults together before it was time for bed.

And it was walking up the stairs that I noticed something. The scar on the back of her head was bright purple.

Now, she has a skull implant there, covered by a thin layer of imperfect scalp skin (thank YOU, neural tube defects), upon which no hair will ever grow. The scar is fairly visible, although it often looks like her part is just extra-long.

She’s also got a couple of birthmarks on her face, common for kids with midline skull abnormalities, all of which turn from mildly discolored to extremely red whenever she becomes Furious George (which, since she’s my kid, is fairly often).

But I’d never seen her skull turn that purplish shade before. Immediately, I thought of what a dumbass move it was to do somersaults with a kid who has a fucking skull implant.

I dragged her into the bathroom, where the light was a bit better, and took a closer look. It could be something…and it could be nothing. Either way, I was right back in that birthing room, delivering a sick baby again. Only this time, it really WAS my fault.

I called the doctor on call, snotting and crying all over the phone, as I kept her up well-past her bedtime, to assess her level of consciousness. When I realized that she seemed to be just fine, the purplishness had subsided, I decided to put her to bed.

Then I checked on her every forty-five minutes for the rest of the night.

The next morning, the on-call doctor finally called back. Apparently, the answering service sucks a fat one. “Keep an eye out,” she said, “for any other signs of head injury. Vomiting, loss of consciousness, swelling, bruising, irritability.”

Okay, this I could do.

The following evening, I put her in bed, where she promptly barfed everywhere.

Shit, I thought briefly, until I remembered that my own guts had been through hell that week. Okay, I told myself, it’s a flu-bug. She’ll probably be up half the night barfing her guts out.

But she wasn’t.

She got up late the following morning and ate a quick breakfast with her brother.

Then, on the way to the Computer Store, she yacked again. A full 14 hours after her initial vomiting episode. Which, to me, was a Very Bad Sign.

Off to the ER we went. After several very long hours, it seemed that was simply some very bad timing. A flu-bug was the most likely culprit for her illness.

She’s been grounded until her sixteenth birthday.

That is, after I buy her a pony and a Porsche.

————

I have a new column up every Thursday at CafeMom. It’s called (barely) Surviving Parenthood. It’s full of the awesome.

———–

Speaking of Full of the Awesome, I was thinking about using THAT for a shirt design. Is that lame?

Also: TODAY is Tax Day, not April 15, which, hi, why didn’t someone tell me it was changing? That’s bullshit.

Anyway, the winner of my shirt giveaway:

(P.S: if you’re interested, they’re giving away a couple of my shirts on Band Back Together, too.)

Dear Amelia,

When you were two, you were a tiny Muppet of a girl, all curls and whirls and bounce and fire.

When you were two, you danced when you were happy; clapping your hands and snorting and giggling.

When you were two, you could also kick the ass of anyone who needed it with your fists of fury. Your fury is legendary.

When you were two, Hello Kitty was your best friend. You called it “Hi Kitty.”

When you were two, your laughter sounded like the tinkling of a thousand bells.

When you were two, your mother tried to make you a heart cuppity-cake. It looked like testicles.

When you were two, your mother bought herself a present to celebrate your birth.

When you were two, your house was filled with balloons and laughter and love and light.

And for a moment, on the day that you were two, my heart took flight.

Happy Birthday, My Princess of the Bells, Amelia Grace.

There are a few occasions when I take time from my very busy schedule of creating pictures of my fake dead cat, Mr. Sprinkles, doing wacky things to respond to emails. Because, really, is there anything better than this?

That Mr. Sprinkles! He’s a WILY guy!

But on very, VERY rare occasion, I get an email that makes me stop and go, “You know what? Maybe I should stop working on pictures of myself with my fake dead cat Mr. Sprinkles and do something better with my time,” (the feeling never does last)

A year ago today, I got one of those emails.

My now-friend Nikki sent me an email about her 20-week old fetus, who had just been diagnosed prenatally with an encephalocele. Somehow, she’d managed to look past the grisly stories out there about other children with encephaloceles (the fatality rate for encephaloceles is exceptionally high) and had found her way to my mediocre blog.

More specifically, she’d found Amelia’s Grace, the stories about my daughter who, too, had been born with an encephalocele.

Amelia was born with the kind of encephalocele associated with the least favorable outcomes. A posterior encephalocele filled with brain matter. I’d had a standard vaginal delivery. There was no NICU team waiting for her. In fact, no one was waiting for her but a nurse, the doctor and a tech.

In short, everything about the situation surrounding Amelia’s story was bad.

When I wrote Amelia’s Grace, the story of my daughter, I’d never really thought that someone else might find my drivel while searching for something to cling to. Some hope in an otherwise grim situation. Because the statistics, those cold hard numbers about encephaloceles; those are grim:

An encephalocele reduces the likelihood of a live birth to 21%.

Only half of those 21% survive.

75% of those survivors have varying degrees of mental retardation, the severity of defects higher for those who have the brain herniation on the back of the skull.

She, however, she is not grim. She laughs in the face of statistics. She will tell that encephalocele to shut it’s whore mouth.

Amelia will also give her voice to those who have none.

Nikki has been a good friend of mine for a year now and she’s helped me as much as I’ve helped her. Proof that sometimes people come into your life at exactly the right time. I owe her a debt that I don’t think she understands.

Now, I will simply direct you to Lily’s Story, which I have strong-armed Nikki into writing for Band Back Together.

Today is the day that it turned upside down for Nikki and my sweet girl, Lily Grace.

What a difference one year makes.

You’re annoyed.

You shift uncomfortably in the ottoman as you check the time on your iPhone and note that the doctor is now forty minutes late. You try not to think about all of the barf germs that you’re now merrily collecting on your favorite ugly pajama pants as your daughter, the one with curls like a halo begins to pull on her shirt, the one she insisted upon wearing, indicating that she, too, is highly annoyed and would like to take off this shirt and GO HOME, thankyouverymuch.

Your toddler son is engrossed in a game of Angry Birds on another iPhone but stops his game for a couple seconds to cough that worrisome I-smoke-three-packs-a-day cough that’s sent you all on a field trip to the doctor in the first place. You frown but quickly turn it into a smile. Even with this annoying bout of what you think is bronchitis, everything is just as it should be.

You are happy. Finally.

You think about the first time you were ever in this pediatrics office; nearly two years ago now. Your new infant daughter tightly clutched in your arms, the frightening MRI images of her precious head on the computer, the referrals to the new neurologist – one who will take your insurance – and you remember how you wept. In public. Again.

You remember those horrible, heartbreaking days well, although the colors are fading into the background, the sights and sounds and triggers all fading into a dusky shade of their former vividness.

You won’t forget. Ever. You know that on your deathbed, you will remember, as those are days you can’t forget, but now, they’re losing their power.

Life is moving forward.

You think of the year that seemed like it was never going to end. The year ends tomorrow.

All of those things you thought you’d never leave behind, all of those things have been put squarely to bed.

Those dragons have been slayed.

Certainly, there will be new dragons to battle, but for now, you stand with your daughter, the one with curls like a halo, proud and triumphant over the bodies of the fallen dragons.

A smile plays on your lips as you think of what’s to come. Of the people you’ll meet and the people you’ll learn to love. Of all of the things that you’ll do with the next 365 days. This year, you know there is hope because there is always hope.

The doctor finally comes in and greets you by saying, “I can hardly believe you’re the same people!”

And you smile and laugh, because you know just what she means.