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:
Dear Speech Therapist:
I am writing to you today on behalf of my daughter, Amelia.
It took me a long time to admit that the birth defect that my daughter had been born with had caused her to develop abnormally. No one wants to imagine their child has problems and all that we’ve dealt with in Amelia’s short life have been problems. Potential problems. Wait-and-see problems. Real problems, too.
Thanks to an improper aligning of cells around 28 days gestation, my daughter’s brain developed (in small part) outside of her head. At three weeks of age, she had surgery to remove this brain matter and fix the skull that hadn’t properly formed.
In her short life, she’s dealt with more than most and she’s handled it with more grace and dignity than I ever could.
So today, I write to you on her behalf.
You are her second therapist, hired by Early Intervention to help my daughter find her words. I like to picture them floating around her beautiful brain like fireflies, someone like you hired to help her find and catch them. If I could have done it without you, believe me, I would have. Accepting help is not something that I excel in.
But I have realized that you have a talent that I do not and I reached out and asked you to help my daughter, the girl with curls like a halo, to help her find her words.
The first therapist Amelia had was fantastic…but was allergic to my cats. She stuck it out and worked with my daughter as long as she possibly could, attempting to EYE OF THE TIGER through it until my daughter was able to find a replacement.
Then we found you. Therapist Number Two.
I’ve met you twice now. My daughter likes you. That says a lot. Amelia is rather picky about Her People.
Three weeks ago, you called off services, claiming you couldn’t make it. Some sort of meeting you wouldn’t be back from. How you didn’t know that ahead of time, I wasn’t sure, but I tried to give you the benefit of the doubt. It happens. Things come up.
Two weeks ago, you called off again. Sick this time. Again, that’s fine. Sick happens. I’d rather you not bring sickness into my home anyway. I’d just had surgery and needed to be sick again like I needed to be kicked in the face by a donkey.
Yesterday, you had your scheduler call. This time, you claimed that you were allergic to my cats. You wanted to continue services by meeting at the mall. THE MALL. Along with the Mall Walkers and teenagers, we were somehow supposed to meet with you at the mall. Right. That makes sense. Because the entire point of having services in the home is because children my daughter’s age learn better in their own homes. The mall is not an environment that is conducive to learning and as an “educator” you should know better.
What offends me most about this is not that you wanted to meet at the mall. It’s that you are lying to me. If you had such a problem with my cats (I have 2 cats, not 23), you should have said so three weeks ago when I had the ability to start the search for someone new then.
Instead, you’ve given me three flimsy excuses and now my daughter has had no therapy in three weeks. Three. Weeks.
While that is not a long time to an adult or even, perhaps, a three-year old, this is a huge amount of time for a child her age. You should know that and you should be ashamed of yourself for putting her in this position.
You left me no choice but to fire you. So I did. I can’t have someone so obviously flaky trying to teach my daughter to find her words.
But I’m hurt that you’d do this to her. She’s had a hard life. You’re not making it any easier on her.
My daughter, though, she’s a fighter. She’s doing just fine on her own. She’s come up with a number of words you never taught her because you’d never bothered. Really, it’s your loss.
You’re lucky I’m too infirm to hunt you down and make you blow bubbles with her.
I honestly hope that your other patients are treated with more respect and regard than my daughter has been.
Sincerely,
Aunt Becky
(phone rings)
Aunt Becky: (breathless) “Oh. My. GOOOOOOOD!”
The Daver: “What?”
Aunt Becky: “You’re not going to BELIEEEEVVVEEEEEE IT!!!”
The Daver: “Uh, what?”
Aunt Becky: “The most AMAZING THING JUST HAPPENED.”
The Daver: “Did an Uncrustables Truck break down in our driveway?”
Aunt Becky: “No! BETTER.”
The Daver: “Did you get contacted to write for Dexter next season?”
Aunt Becky: “Even cooler!”
The Daver: “Did you get a check for a million dollars that you DIDN’T have to pay back at 99.9% interest?”
Aunt Becky: “Nope! Guess again!”
The Daver: “Did you get your own Lifetime Original Movie where Tori Spelling would play you?”
Aunt Becky: “NO!”
The Daver: “Did you finally design a working robot monkey butler named Mr. Pinchey you’ve been carefully planning out for 3 years?”
Aunt Becky: “Not yet! Soon Mr. Pinchey will be MINE!”
The Daver: “Did you find out McDonald’s was actually good for you?”
Aunt Becky: “My ass wishes!”
The Daver: “Did you finish the Panic Room you’ve started in the treehouse?”
Aunt Becky: “Still trying to lug the lead doors up the trunk!”
The Daver: “Did you finally teach the cats to dance?”
Aunt Becky: “They’re getting a little funky fresh, but not yet!”
The Daver: “Did you find a way for our whites to get even whiter?”
Aunt Becky: “I miss Billy Motherfucking Mays.”
The Daver: “Did you find a source of non-addictive Vicodin?”
Aunt Becky: “That’s on my agenda for the weekend.”
The Daver: “Then I give up.”
Aunt Becky: “OH MY GOD. SO I GOT THIS EMAIL…I CAN’T BELIEVE THEY SENT IT TO ME!”
The Daver: “Wow. Must be quite an email.”
Aunt Becky: “It was from someone I’d been meaning to email for AGES. And SHE emailed ME first.”
The Daver: “Okay.”
Aunt Becky: “IT WAS FROM THE SPINA BIFIDA ASSOCIATION. THEY WANT TO WORK WITH ME, DAVE. ME! MEEE!
The Daver: “Yeah?”
Aunt Becky (sings): “OH HAPPY DAY!”
Aunt Becky: “This is huge! Do you even know why!?! I’LL TELL YOU WHY. You know how Mimi has an encephalocele, right? That’s a neural tube defect. The Spina Bifida Association is a BIG DEAL for people with Spina Bifida! Spina BIFIDA is another NEURAL TUBE DEFECT!”
The Daver: “Yep!”
Aunt Becky: “They want to work with me to raise some awareness for Spina Bifida, which DUH, of course I’ll do. If Mimi’s encephalocele had been farther down her spine, it would have BEEN Spina Bifida, right? OF COURSE I’LL HELP ANY NEURAL TUBE DEFECT SOCIETY.”
The Daver: “Of course!”
Aunt Becky: “But this is exactly what we’re going to do with the encephalocele website we’re putting together. It’ll be for parents of kids with encephaloceles. There are so few of us out there, but still, we deserve a big website, too. IT MAKES ME SO UPSET THAT WE HAVE NOTHING, DAVE. But anyway.”
(breathes deeply)
Aunt Becky: “MAYBE THE SPINA BIFIDA ASSOCIATION WILL WORK WITH ME SOMEDAY! The March of Dimes is already thrilled about our website! And I have some of the top neurologists in the country waiting for us to get it all put together.”
The Daver: “Yay!”
Aunt Becky: “NEURAL TUBE DEFECTS UNITE!”
The Daver: “If anyone can make that happen, it’ll be you.”
Aunt Becky: “We’re going to do this. Katie, Nikki and I. We’re going to do this.”
The Daver: “You will. And it will help so many people.”
Aunt Becky: “This is better than the time I mixed Count Chocula and Frankenberry Cereal. Now I’m off to call the Spina Bifida Association.”
The Daver: “Okay.”
Aunt Becky: “I’ll try not to sound like a creepy fangirl.”
The Daver: “Good luck. Because you kinda are a creepy fangirl.”
——————
Normally the things that Your Aunt Becky rages against are things like “tofu bacon” (I mean, really vegetarians? Bacon is meaty and delicious. Just…give up the ghost and call it something else. I love tofu. Tofu is not bacon. It will never be bacon) and “thousand island dressing” (because if you had ever been a waitress and had to clean up hot thousand island dressing, which, I should tell you right now, MELTS, into oil and bits of…gross green things *gags* you would call it bullshit, too).
Occasionally, I’ll wage war against a random celebrity, like John C. Mayer, (who, I should tell you, I’ve been at war with since 2003, and this cease-fire I’ve called has left a big gaping John C. Mayer-like hole where John C. Mayer used to be) but really, I can’t get worked up about a whole lot. You have to be smart to get mad about stuff, and Pranksters, we know my IQ rivals boxes of rocks.
This weekend I went on a tear.
I was 29 shades of Furious George because I had been putting together a reference sheet about encephaloceles for Band Back Together and realized, once again, there’s fuck-nothing out there about them.
Now, for those of you not glued to my archives, my daughter Amelia was born with a previously undiagnosed encephalocele in January of 2009. An encephalocele is a nasty little neural tube defect (like spina bifida), only with encephaloceles, the skull, rather than the spinal cord, is the improperly formed bony structure, and in Amelia’s case, part of her brain developed outside of her head.
It’s about has hilarious as it sounds.
Obviously, she’s fine. She kicked that encephaloceles ass.
When I talk about the statistics we beat, it’s staggering to me. I can’t even wrap my mind around the infinitesimally minute minority we fall into without crying.
But what’s bothered me this whole time, besides the lingering PTSD and the unanswered questions about it all, is this: there’s nothing out there for other parents who sit on the computer, perhaps even prenatally diagnosed with some sort of encephalocele or neural tube defect, scared and alone.
I do mean nothing.
Oh sure, you can find some articles about encephaloceles from Children’s Hospitals. Some eMedicine artcicles about encephaloceles. Terrifying images of dead babies. Babies with horrible encephaloceles. The worst case scenario of what your baby could look like with an encephalocele is right there.
If you broaden your search to “neural tube defects,” you find more information. A number of spina bifida support groups. The Spina Bifida Association is an awesome resource and support group for parents of kids with spina bifida. Then again, spina bifida, a sister neural tube defect to encephalocele is one of the most common birth defects. Spina bifida affects 1/1,500 babies every year.
When I first started researching (I’m a researcher at the core of it all) encephaloceles after Amelia had her neurosurgery to correct her encephalocele, I had lumped all neural tube defects together. I had been wrong. I had thought that encephaloceles were much more common than they are.
Spina bifida affects 1 in every 1,500 babies a year.
Encephaloceles occur in 375 babies a year in the United States.
Not 1 in every 375 babies. Just 375 babies. That’s hardly any babies at all.
That’s why there are no support groups for parents of babies with encephaloceles. There’s no one running a website devoted to these particular neural tube defects (that I could find). There are no places to go when you’re scared and terrified and alone and shit, encephalocele is a fucking scary ass diagnosis. Look at the statistics. They’re grim.
Then, look at my daughter:
She’s not particularly grim. Unless, of course, you take away her cuppity-cake. Then she’ll cut a bitch.
Through some magic key, eventually if you search through enough pages about encephaloceles, you’ll find my blog. I know this, because I’ve met a couple of families who, when they’ve been diagnosed prenatally with an encephalocele, they’ve come by and talked to me.
It’s how I met my now-niece, Lily Grace (named in part, I should say, after my Amelia Grace), who is also kicking ass and taking names.
The gut-punch came this weekend, when I saw that in the searches for my new blog, the only thing besides some combination of “Band Back Together,” that people had searched for was “encephalocele – parenting.”
Okay, so that’s when my cold, black heart broke and I got good and motherfucking mad. I knew that someone was searching on the other side of a computer for something that does not yet exist. Some comfort. Some place that does not show you the horrors of a diagnosis that is not always horrible.
After I paced around the house, furious and upset, because Pranksters, that is motherfucking BULLSHIT, I realized that it was time. I’ve been slowly reaching out to people and asking them to contribute stories about neural tube defects to Band Back Together, because that’s a place to start.
I’m gathering research and I bought a domain. I have two partners. Lily Grace’s Mom, Nikki, and Katie. We all think it’s bullshit, too. It’s time to take action.
So, Pranksters, if you know anyone who has a story about Neural Tube Defects, please let us know. OR, you know, if you have some other full of the awesome ideas -like a dance party- let us know.
Or, you can just tell me something you think is bullshit. Because there are so many things that are bullshit out there. Like turkey bacon. And clowns. Clowns are totally bullshit.
(tomorrow, it’s Prank time. We’re gonna pull a John C. Mayer for charity)
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.
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.
When I was a wee bonneted lass of about three, I stumbled upon a worn copy of Grey’s Atlas of the Human Body hidden in plain sight on the overstuffed bookcases at my parents house. I have no doubt that I was looking for a leftover piece of chocolate with which to taunt my brother (“Loooook at what IIIIII found, Uncle Aunt Becky, and yooooouuuu can’t haaavvvve it!”), but accidentally I found something that would change my life.
The book fell from it’s shelf, flipped open and the afternoon sun sank in the sky as I poured over the ancient pages of the human body, flayed and open, the diagrams carefully explaining words I couldn’t quite read. It didn’t matter what they said. The pictures were there: the muscles, the bones, the heart, the brain.
It was beautiful.
I fell in love at three years old. It’s a love that still makes my soul dance, my face break out into a gigantically goofy grin, and my brain flood with serotonin and norepinephrine.
Happiness. Such a simple emotion. So hard to explain.
When My Band of Merry Pranksters (and, presumably Your Aunt Becky) were asked by The Science Museum’s new worldwide project, “Who Am I?” to answer ‘what makes you smile?’ I could hardly say no.
In no particular order, here are some things that make me smile:
1) Unintentionally hilarious packaging by way of poor translation.
This gem was sent TO ME by my friend Wild Cakes and it sits proudly in my china cabinet. Because why the hell would I actually put CHINA in there? What, am I FANCY PANTS now?
(answer: you can take the trash out of the girl, but you can’t…wait, I’m confused)
2) My awesomely bedazzled phone. It’s really, really pathetic, actually, but it goes to show that when you can find someone else who CAN do something for you, you always, always should. Otherwise, you end up looking like a thumbless two year old probably had arts-n-crafts time with your phone.
c) Twitter. Although I often mocked it for being the most narcissistic and obnoxious, I now find to be full of The Awesome.
4) Mushroom Printing, our new group blog which is going to be full of the win, which is now ready for you to submit your most delicious, entertaining stories. I’m sure I’ll do an official launch on Monday when The Internet is not sleeping, but may as well start that puppy up.
f-niner) Smaller pants. They may not be my missing (WHORE) pants, but at the very least, I ordered some new pants in a smaller size.
00.00008) The continuing adventures of Mr. Sprinkles, my fake cat. Look at what that wily cat was up to when I wasn’t looking!
So THAT is what I was upset about. Mr. Sprinkles was busting up my army of bunnies!
And there Mr. Sprinkles, my fake cat, is AGAIN!
Oh, Mr. Sprinkles, what a silly guy you are.
6.8) This poem, that had me smiling through my tears, written by my friend, Star Crossed Writer. It is singularly the most beautiful thing I have ever read.
Amelia
An army stands ten thousand strong and tall,
But you shall rise above the bloody fray
And rain down vengeance ‘pon your enemies
And all those who would stand against your will.
When darkness threatens fainter hearts than yours
And calls ring out for champions to arise,
The cries will cease and everyone will see
Amelia, the Princess of the Bells.
I don’t even know what to say. Thank you doesn’t begin to suffice.
————————-
All right, Pranksters, this is what makes Your Aunt Becky smile. What makes YOU smile? Pull up a tall glass of vodka, gather round, and let’s freaking SMILE our balls off today.
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.
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.
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.
