Mommy Wants Vodka

…Or A Mail-Order Bride

Wednesday’s Child is Full of Grace

January20

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?

Mommy Needs Vodka

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.

All That You Can Leave Behind

December30

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.

More (than) Words

November17

Pranksters, you have watched my daughter grow tall and strong. You have cheered her on, loved her from afar (and from – in rare cases – close by), and helped her by helping me. You are the Prankster Army of aunts and uncles she so deserves and one day, I hope that you all can meet my Princess of the Bells in person.

I wanted her to tell you something that she’s been waiting a long time to say:

Darkness and Light

August31

When I pulled up to the hospital yesterday and walked through those sliding doors, whirring officially shut behind Amelia and I with a snap, I was calm. I’m not sure how I paint myself here on my one-dimensional blog, but I’ve never been prone to anxiety or cases of the vapors, and typically in the moment, I’m about as calm and collected as they get. This was no different.

I gripped my phone like a talisman and strode over to the desk where sure enough, a new volunteer greeted me to help me find my way. The scent of lilies was heavy in the air and I tried mouth-breathing (one of the few perks of having been a barfy pregnant lady) to stave off the smell. Calla lilies are one of my favorite flowers, but the rest of them remind me of all of the friends I’ve buried.

Amelia, refusing to be held, led the way through the hospital, past the gift shop where I bought her heart necklace, past the chapel where I prayed for her, past the cafeteria where I remember laughing for the first time, my throat rusty and dry, the laugh unfamiliar, past the NICU and PICU, her little legs chugged along, sturdily running so fast that we had to half-jog to keep up with her.

Finally we reached an unfamiliar corridor and the volunteer whom I’d been handily chatting about tropical plants with bid us adieu. Amelia trucked on ahead, thrilled by the freedom to run up and down the corridors, uninhibited by the ghosts that roamed them.

When we found our way–because Mili always finds her way–I saw the Children’s Memorial Hospital sign on the wall across from her new neurologist’s office. In a bizarre twist of fate, this happens to be a satellite unit of the same hospital that I did my pediatric rotation through years ago. It’s an amazing hospital.

It’s hard to believe that my daughter is now a patient.

In the waiting room, Amelia made a beeline for the crayons and happily dumped them out all over the table. Screw coloring.

Eventually, we went back and met with the neurologist, who I was understandably anxious to meet. Neurologists, for those of you happily unawares, aren’t perhaps the kindest of all doctors. They’re sort of at the top of the doctor heap, only beaten by infectious disease doctors, and what’s more is that they know it. So people skills aren’t exactly important to their profession.

I was prepared to go all Campaign of Terror on him and be all “you DO know who I AM, don’t you?” and not because I am a pitiful blogger who might pathetically attempt to sully his reputation on the internet (I wouldn’t), but because I come from a line of well respected doctors who are well known. My now-middle name would be a dead giveaway, but I was all, you’ve got to know when to hold ’em and know when to fold ’em and stuff.

I didn’t even have to whip that out because he was FULL of the awesome. When Amelia took his reflex hammer and started trying to test out MY reflexes, he simply went and got another one rather than try and wrestle it out of her fists of fury.

For any of you not playing along at home, Amelia was born with a midline parietal enecephalocele which is a neural tube defect caused by the failure of the embryonic neural tube (the primitive spinal cord) to close properly. Her skull didn’t fuse and part of her brain, the part right about at the crown of her head (for anyone who doesn’t know where the parietal lobe of your brain is) developed outside of her head. It was a true encephalocele, not a meningeocele, meaning that there was actual brain matter inside of the defect, not just cerebrospinal fluid.

Having an encephalocele reduces the likelihood of survival at birth to 21%. Half of those live-births survive. Of those survivors, 75% have a mental defect. The poorest indicators for survival and associated anomalies are true posterior encephaloceles. Like what my daughter, Amelia, was born with.

At three weeks of age, she underwent massive neurosurgery to repair the bony defect in her skull with a skull implant and to remove the herniated brain tissue that had developed outside of her skull. The surgery was a success.

Mili’s neurologist suggested that we follow up with an EEG to look for any possible seizure activity while she is sleeping, as she displays none of the signs of seizing while she’s awake, because it is the last thing that can be treated. Neither the neuro nor I believe it’s seizures, but it’s worth a shot.

Any other developmental problems are simply a continuing result of her encephalocele and the microscopic neurological problems that they caused when she was developing.

Logically, I knew this. But my heart was filled with darkness as I left the office, my daughter chasing the light shining through the windows in the corridors of the hospital as I trotted to keep up with her. I wanted it to be easier.

I ducked into the gift shop and bought her a necklace. A new necklace for a new battle. And as I strapped it to her brave chest, the tears falling down my face, I whispered, “there’s the light, Princess of the Bells. Now you find your way. Don’t let anyone stop you. Ever.”

And she won’t. She’s her mother’s daughter, and if I can find my way in this crazy fucked up world, my daughter will, too. Her light will guide her, just as mine has. In lumine tuo, videbimus lumen.

Shine on, you crazy baby, shine on.

All That You Can’t Leave Behind

August18

It’s a nice enough looking building, all official and comforting, with people buzzing in and out in their neatly pressed scrubs, looking like they know precisely what they’re doing and where they’re going. In the hallway there, there’s a heart statue, or maybe it’s a statue of kids in a ring, perhaps playing a game of “Ring Around The Rosy.”

The desk is always manned by a sweet-faced volunteer to help you find whatever you’ve lost or find your way, except when, of course, you cannot find it at all. There are flowers there, too, beautiful flowers, always fresh flowers. Usually lilies are mixed in, fragrant lilies, reeking of death and funerals, but the flowers are so beautiful that you can almost forgive the scent that makes you want to vomit.

Over there is the place you cried until you dry-heaved as you took your infant daughter to her third MRI in her first week of life. And just past that is the chapel where you prayed for her life. The stained-glass windows during that frigid February day shone a cold bright light as your daughter slumbered through an anesthesia coma, and you tried to forget all that you knew about neurosurgery.

You prayed with all of your soul.

Above the chapel is the waiting room where you sat after you’d dropped your daughter off into the arms of her neurosurgeon, hoping that the last kiss you gave her warm, delicious head, wouldn’t be the last kiss you ever gave her. You sat in that waiting room with the three people who cared enough about you to show up and hold your hand and you choked back tears as the operating room nurse brought you back a bag of your daughter’s first hair in a bio-hazard bag.

You held that bag and wondered if that would be all you had left of her.

Below that waiting room is the gift shop where you dragged Nathan, someone who you will always treasure for being a friend when you needed one most, to buy your daughter something hopeful. A necklace. Carefully, you pick out a necklace that you will give your daughter and someday tell her, “Amelia, Princess of the Bells, Mommy bought you this when you were having your brain surgery.”

It’s a very beautiful necklace. A crystal encrusted heart on a simple silver chain in a velvet bag. It is perfect.

You hope she knows that this necklace is very, very important.

Two floors and a yawning corridor away, is the happy floor, filled with women and new babies, where your life was forever changed with seven words, “Becky, there’s something wrong with your baby.” A new world was created then, a secret place only you could go, this land of tears.

Your soul broke.

Up above that room, down another winding corridor, you screamed as they wrenched your nursing baby from you. Your breasts wept, too, as you cowered in that bed, terrified, in your secret place, your own land of tears.

In the dark basement, worlds away from the happy new parents above, you joined the ranks of the hollow-eyed ghosts in the NICU as you signed in and out to see your daughter. There, at least, you didn’t scare anyone with your eyes swollen nearly shut from crying and cheeks raw and bleeding from hospital grade tissues.

Above her bed there would be her bed post-surgery in the PICU and seeing her in a gown that bore the same logo as the hospital you’d worked at in nursing school made it almost easy to pretend this was all some vicious nightmare. That maybe you’d wake up to a normal, healthy baby.

Then your daughter would cry, her voice raw and hoarse from intubation and you knew this was your new world order.

When your other children came to see their sister, you’d rearrange your horrible face into a mask of what you hoped would pass as cheerfulness, ply them with candy, and hope that they wouldn’t look too closely at your shaking hands or tear-stained face. When they screamed, “I want MOMMY!” as they left for the day, you felt torn between the two worlds, one of which you’d just as soon leave behind, too.

All corridors eventually feed into the cafeteria, where you remember laughing for the first time in months. It was a jangled, strangled sort of sound, but there it was: a laugh, from your mouth, and it was real.

Down by the statue of the heart or perhaps children dancing in a circle is where you waited with your daughter as you took her home with you for the last time. Surrounded by all of the pink things you could find, balloons deflating slightly in the cold February air, you were exhausted, but ebullient: your warrior daughter had made it.

A mother had never been prouder. You held her car seat close to you as you whispered to her sleeping cheek, “You made it, my girl. You’re a fighter like your Momma, all right.” This time, for the first time in her life, when the tears wet her cheek, they were the good kind.

But late at night, when the rest of the house sleeps, these are the corridors that your mind roams, over and over. Your memory, always photographic, can recall everything with the sort of clarity that makes you relive those days constantly.

You are forever delivering that sick baby.

Constantly having her wrenched from your arms, always back in those terrible moments roaming the halls, seeing the same desk clerk, smelling those awful lilies, dry heaving into the diaper bag.

The sadness is omnipresent and yet nowhere. It is the new world order.

Save for roaming the corridors all night every night, you haven’t been back to those halls since your daughter had those awful thick black stitches removed from the back of her head.

You must return. New problems, a new specialist, means one thing: you must face your demons and return.

A new desk clerk and a new flower arrangement await you in the official looking building in which you found absolutely no comfort and now you must face up to walking these halls once again. It’s likely that you’ll cry. It’s likely that you’ll dry heave. It’s likely that no one will understand your reaction to this big official building. It’s just a place, after all.

But this is so much more than a place. It’s where the old you shriveled up and died and the new you was dragged screaming into the world.

So you and your ghosts walk the corridors all night every night, reliving the worst parts of your life, wishing they could be laid to rest, knowing that they never will.

Ever.

Signs of the Times

August12

Before I left for the conference, I had a mountain of shit to take care of that included such important things as:

Make Hair Not Look Like Joan Jett/Mullet

and

Secure Total World Domination.

That meant that such other, minor things like, Teach Amelia To Speak and Make Appointment for Alex to Have Tongue Tie Surgery went into a folder in my inbox marked TAKE CARE OF THIS SHIT NOW.

Of course, it’s Thursday and I haven’t really touched any of that stuff, so making that folder was really just a front to make me FEEL as though I was accomplishing things when, in fact, I wasn’t. That’s precisely why I don’t make lists, actually.

My kid, however, loves them:

The only thing in my Folder of Shit I Need To Take Care of that I’ve managed to actually start on is Amelia’s speech. Bolstered by a number of you, who have sworn up and down that Baby Sign Language, I’ve started down that road.

Back in Junior High, we had to take a class that was called some acronym like HELP or DARE or SUCKS or something, that was clearly not very useful because I cannot remember it. But in that class, we had to, for a week or something, have a disability. I assume this was to make us more compassionate people, but I also think that the people who designed this should have probably realized that Junior High Kids are asswads and picked another age group to minister this lesson upon.

Anyway, I’d been (for whatever reason), hoping for Deaf, because I thought learning the sign language alphabet was cool.

So I was given the task of being Blind. Which, hi, I peeked when I had to pretend to spend the day in a blindfold like an asshole. I’m thankful I didn’t have to carry around a Bag of Flour Baby or pretend to be a mime because mime’s are scarier than anything else.

*shudders*

I then learned the ASL alphabet anyway to spite the stupid program who made me Blind when I wanted to be Deaf and still remember it to this day (I can also, I should add, recite the Preamble to the Constitution, which I had to memorize in 5th grade)(but what’s my middle name? I DON’T KNOW).

So far, I’ve learned the words for “poop,” “drink,” “star,” “ball,” and “syrup.” I’ve also ordered a couple of those “Signing Time” DVD’s that ALL of my Pranksters swear by.

I’d been hoping that being proactive with the Helping Amelia Learn To Speak Project (and hopefully not regress further, which, let’s face it, she can’t go back much further) would make me feel better. Despite my whole “I don’t plan things” I am a do-er.

Normally taking care of business makes me feel all accomplished, like I should pin a jaunty medal on myself that says, “I TAKE CARE OF BUSINESS, PEOPLE!”

(note to self: Make That Medal and Wear It Often so that I feel more self-important than normal.)

This time, however, it’s just not helping me feel better about my daughter.

It’s odd, because I’ve had a mute kid. I have an autistic older son and he didn’t speak for years and I never worried about it. Now, of course, he never shuts up, proving that “talking paint off walls” is a genetic trait.

But with Amelia, who was born with her brain hanging merrily out of her head, knowing that her speech is regressing leaves me with this nebulous worry that I cannot quite put my finger on. It seems more serious this time, like it could be something real, in a space where I previously figured–and was correct–that Ben would just do things on his own timetable.

So while I am teaching the other people in my house the signs for various and sundry things in an effort to feel like we’re not just shrugging our shoulders and letting the Amelia Speaks project flounder, I am filled with a sadness I just can’t place.

Maybe there’s a sign for that.

Although, I’m pretty sure that Amelia is saying…

You + Me Against The World

July22

Even in the NICU, she made her temper known. Her furious bleats echoed from the previously calmer walls, disturbing the other tinier occupants and their parents, and I had the good grace to feel sheepish as my daughter wailed fiercely, her gigantically fat legs and arms pounding against the sides of the isolette.

“Let me the fuck outta here!” she hollered without saying a word.

I echoed the sentiment, with my own words, of course.

My daughter, she is a fighter.

At birth, my Amelia Grace, the fighter, born with her brain hanging from her head, she disturbed the entire labor floor with her angry screams. Indeed, one of the only clear memories I have of her birth is her shrieks, so loud, so furious over the grievous sin of having been forced to be weighed.

(I, of course, feel precisely the same way every Friday when I am weighed in, but, you know, I am much more in control of my tantrums, so I can shriek QUIETLY before having to see the number on the scale)

This trait, this fighter trait, it has never left my daughter, my warrior girl, and it is with intense pride that I see her furiously beat her hands against the floor, shrieking in anger over some injustice, because it is so familiar to me. She is her mother’s daughter and she should know how to fight.

Yes! I say to her, YES, my brave, sweet girl, you FIGHT against it. You get good and god-damned mad and you take that anger and you channel it into something good and you use it for all it’s worth. That is the tiger in you, my child. And you let that tiger out and you let it ROAR and God HELP anyone who gets in your way. That fight will remind you you’re alive.

My little Amelia is a warrior.

If anyone should be born with the spirit of a warrior, passed so handily down from her mother’s DNA, I think it should be a daughter, someone born with the odds stacked so heavily against her.

Still, she doesn’t speak to me and tell me the secrets of her heart, although when I look into her deep brown eyes that mirror so closely my own, I can see them there, just below the surface. The Little Prince was right, what is essential is invisible to the eye. And when my heartstrings pull painfully in my chest, imagining the times when it will be so hard for her, I comfort myself in knowing that the warrior heart that beats within my own chest beats within hers as well.

The secret place, the land of tears, well, that will be hers alone, as it is with all all of us.

As I look at her, awestruck, often bemused by her anger, flared up by the terrible injustice of having been told, “no, no we’re not having candy for dinner,” I never forget how lucky I am to have her by my side.

Her speech therapy will begin soon. She’s operating at quite a delay, backsliding from even where she was several months ago. So now we put on our platinum battle armor, polish our diamond coated swords and get ready, because it’s time for the fight to begin.

My Miracle Mimi, my Warrior Principessa; it’s you and me against the world, kid.

So watch out, world.

Chordae Tendineae

July1

Human anatomy I’ve always found to be a strikingly tender science. Certainly, I always loved the dryness of the carbon chains and the satisfaction of growing new strains of bacterium, but seeing the human body and lovingly learning all of the nooks and crannies, all of the ways that we are all the same underneath, that is beautiful.

I always heard civilians shudder when I explained that I would be assisting with a dissection.

“Gross,” they would say. “I could NEVER do something like that.”

When pressed, I never got anything more specific from them, which meant that they’d never seen one, because the body, well, the human body is not gross. It is resplendent. It is powerful. It is amazing. It is beautiful.

All of the organ systems functioning in synchronicity so that we are able to walk upright, speak, form words, paint beautiful pictures, draw pictures with our written words, love, that is not gross. And that is what human anatomy is.

Inside, we are even more beautiful than out.

Rarely, however, do the names of the parts of the body reflect their beauty.

Often, they’re named after the anatomist who found them because scientists are about as self-serving and obnoxious as bloggers. The Islets of Langerhans, for example may bring to mind a nice set of islands found off the coast of Ireland, but no, they’re actually endocrine-producing cells of the pancreas.

Even the very word pancreas sounds more like something you’d find dead on the side of the road than something that creates the body’s most important enzymes. But to say it aloud sounds dirty, something you spit out of your mouth, a splat, an inelegant word for a very elegant organ.

The day we learned of the heart, I came across the words chordae tendineae, and I stopped for a moment. Latin words make me happy, which is probably, in part, why I am so attracted to virology. Continuing on, I read what this curious, elegant term meant.

The chordae tendineae are tendinous cords of dense tissue that connect the two atrioventricular valves to their papillary muscles in the hearts ventricles.

The chordae tendineae are the heart strings.

That is probably the most graceful and magnificent term I have ever heard and the best representation of why I find human anatomy so intoxicatingly lovely.  We human beings actually have heart strings.

Whenever I am sad, I think of those tiny strings, which I have seen with my own eyes, felt with my fingers, those strings of fibrous tissue, so very much stronger than they look, and I am comforted by the heart strings that bind us all.

On my refrigerator hangs a report from Early Intervention with my daughter’s name on it. It is a discharge sheet that states that she is at or above level for everything. It was true then. It is not true any longer. I cannot bear to take it down, because to take it down would be to admit defeat.

I will not be defeated. My daughter will not be defeated.

When I called my case worker, she sounded so sad to hear from me, her voice mirroring my own. It didn’t help that the only sheet of paper I could find with the phone number on it was her discharge from the program with a jaunty, “We enjoyed working with your family!” on it.

The therapist will come several days after my 30th birthday to evaluate my daughter and to tell me what I already know: Amelia is not normal. Amelia needs help. I am a trained diagnostician and I am aware of both of these facts. I am also aware that I am doing the right things. But knowing this doesn’t make this any easier for me.

There is something between her brilliantly big brain and delicate rosebud mouth that isn’t connecting properly. It fills me with a well of sorrow I didn’t even know I had, because I want so badly to hear her words. All of her words. Stories of Saturn and the planetarium and pleas for cookies and candy and the injustice of it all when I deny her.

I want to know my daughter.

Instead, I kiss her head and rub her scar and apologize to her for what is certain to be a hard road ahead. My heart strings clench painfully and I cry bitter tears, wishing I could make it easy for her, knowing I can’t.

We’re gearing up for a battle over here and we’ll win.

Eventually. Some way, somehow, we’ll win.

In The Heat, I Swear Mr. Penguin Was Laughing At Me. He’s An Ass.

June23

When I tell people that Alex, who is now three, wouldn’t let me out of his sight for the first year of his life, they normally give me That Look. The one that sort of implies that I’m a helicopter parent, you know, like I hover around him, so that Ickle Alex doesn’t DARE get a boo-boo wifout his Momma RIGHT THERE to cuddle him up and protect him from the big, bad world!!!

Considering I informed Twitter I was shopping for a bag of glass and new gun to give him for his birthday, I don’t think anything could be farther from the truth. I love my kid to chunky pieces, I could have done without the suffocation of the first year. Bumps, bruises, those are part of childhood. And shit, one look at my legs would tell you those are part of my adulthood too.

After his sister was born, I was fortunate enough to secure him a spot in an in-home daycare for three hours a day. It was probably the smartest thing I’ve done–even smarter than the time I tried to whittle a model of the Parthenon out of a marshmallow–because for three hours a day, the kid is with other kids the same age. He’s had to LEARN to adapt to a life outside of his mother.

Of course, he HATED. LOATHED it, even. The lady is fantastic, the other kids are all under five and she does stuff with them that’s full of the awesome like going to the fire station to see the trucks! Story-time at the library! They went to Costco to make cupcakes! I mean, life is good for Alex.

Now, my slow-to-warm-up son loves it. On the weekends he asks to go to her house.

Alex is just a particular brand of finicky that reminds me of both my father and brother, both of whom are so set in their ways that they can hardly stand it when things do not go according to plan. It appears that not only does my son resemble my brother in appearance, he’s taken after the Sherrick side of the family in temperament as well as sense of humor.

(Pithy aside: He told his first joke last week, which he found UPROARIOUSLY funny, “P is for POOPY! BWAHAHAHAHAHAHAHAHA!” And Alex, he has the best laugh of any of my children, so we all laughed along, first out of shock that he’d told a joke and then because he was in hysterics.

My child, all right.)

St. Charles is a Soccer Town, you see, and we’re all practically expelled from the womb clutching a wee soccer ball. So it was merely a matter of time before Alex was handed his, and as he’s spent the better part of two years kicking soccer balls, I figured this would be like heaven for him.

What I DIDN’T realize is that Alex would have a problem with being on his own to do it.

But we don’t give up in my family, at least not on my fucking watch, so I’ll be dipped in pigshit before I let my kid leave soccer early because he’s unhappy about it being DIFFERENT. He’s slow-to-warm-up, which means that in a couple of weeks months I’ll have to pry him off the field, but for that moment, I was stuck, sweating my balls off, and holding my son, wondering what to do.

The other parents were all sitting in their lawn chairs watching their kids play soccer, looking at me, bemused.

Dave was wrestling with Amelia, who was trying like hell to wander into a Ebola-ridden puddle and shrugged at me.

I looked at Alex, still happily nestled in my arms.

Then I did the only thing I could think to do.

I put him down, grabbed his hand and marched my sandal-clad feet down to the soccer field and said, “Let’s play some soccer, kiddo.”

There I was, the World’s Most overgrown three-year old, playing a mean game of Red Light, Green Light on the field with the kids like a damn asshole, while the other parents looked on, laughing. I was Billy Madison, except in soccer.

You know what? It fucking worked. I mean, I looked like a bigger moron than normal, jogging around the field like an overgrown toddler, but still, the kid stayed, he’s happy about going back next week, and soccer is going to be just fine.

Thank Baby Jesus, Ben can play his violin (he has perfect pitch!) without me up there playing alongside him. Because I’d hate to upstage some little kid when I busted out my version of “Enter Sandman” on the heavy metal cello.

More Than Words

June9

The first time I saw a brain, a real brain, suspended in some greenish liquid at the front of my gross anatomy lab, I stood there, staring at it for a good long while. I was long past being disgusted by the organs of the human body, and seeing the folds of the creamy white tissue struck me only with a sense of wonder. This was it, right there: all that you were, all that you thought, all that made you you was right there in that innocuous looking organ.

Really, it could have been a football for as glamorous as it looked.

But to know how it worked, studying the nuances of neurology, that is poetry. All of the mysteries that we still do not know about how the synapses fire to make one person want to maim and dismember and one person want to paint the Sistine Chapel, that is beauty. The smooth folds folding seamlessly into each other made up separate and distinct parts of the brain and instinctively I rattled them off in my head as I examined the brain in the jar: the cerebral cortex, responsible for how we are feeling, our emotions. Those that make someone laugh or weep, smile or scream, right there.

The parietal lobe, which is how we use all of our senses at once to make decisions, the back of the head responsible for sight, the very sense I was using to examine the brain I was so enthralled by. Without it, I wouldn’t be able to drive a car, see the deep brown of my son’s eyes, the bright red of the fall leaves outside of the classroom. One by one, I observed all of these structures on that brain, carefully preserved in formalin in a jar labeled ABBY NORMAL.

How could something that looked like a Nerf ball be so mystifying and so shockingly resplendent in it’s simplicity at the same time? Something that made each of us who we are should have looked unique, special, like a jewel and somehow, the more brains I saw, the more I realized that they all looked pretty much the same.

Maybe it’s what we do with those hunks of white matter that contains the beauty, because with the exception of the cerebellum (which is surprisingly beautiful), it’s a highly understated organ, especially when compared to something flashy like the kidneys.

When my daughter was born with part of her brain hanging jauntily out of the back of her head, the doctors pretty much shrugged their shoulders when we asked what that meant about her future. While she showed no signs of neurological damage, she could be profoundly normal or profoundly retarded, it simply wasn’t something that could be determined by a blood test or an MRI.

Up until she was a year old, Amelia was followed by Early Intervention, who came every couple of months, tested her, declared her normal and left. When she turned a year, I figured it was probably time to let them close the case on her for now and promise to make a call back if something changed. I know the drill with special needs kids well enough, and her medical diagnosis is an immediate qualifier for assistance.

It’s taken me until now to realize that there is actually something wrong with her beautiful brain.

Amelia has no words.

She has no words.

No glorious words, the very thing that I make my (pathetic) living from, she has none. I’ve always derived so much happiness in putting together combination of words to titillate, horrify, or move people, and she has not one word.

She’s had words before, they’ve slipped out of her mouth for a couple of days until it appears that she forgets them and goes back to shrieking and grunting to get her point across. In many ways, this terrifies me more than seeing my mute autistic son did, because it seems as though she has words, then loses them again.

It’s time to call the specialists back in and help my daughter find her words.

For good, this time.

I have a lot of delicious combinations to teach her.

« Older EntriesNewer Entries »
My site was nominated for Best Humor Blog!
My site was nominated for Hottest Mommy Blogger!
Back By Popular Demand...