Dear Ellie,
I was disappointed to come in this morning and find that your oxygen requirements had increased. As your lungs get progressively worse, respiratory support goes up. What baffles me the most is the fact that you are breathing voluntarily, quite a bit. Yet for some reason, those breathes simply aren't very productive. The doctors don't have an answer to the ultimate underlying cause, but the general reason seems pretty obvious: your lungs are damaged or filled with fluid and aren't working like they are supposed to. Seeing you continually move backward in this way is nervous when even standing still would be concerning.
Lung problems during pre-maturity are one of those big risk factors for cognitive and motor disabilities later in life. If your brain cells go undernourished of oxygen for extended periods of time, they can quickly whittle away. Seeing you in this condition has brought my thoughts back to your future. To the kinds of troubles you might, or probably will, face.
The following are letters to my daughter, Ellie, who was born premature, 4 months too early. They document her many months stay in the NICU, her trials, and the emotional struggles of her mother and I.
Friday, February 28, 2014
Elephas sapiens
Dear Ellie,
I’ve always been interested in the idea of alternate
history. There are certain defining
moments in our past, tipping points, where two very different outcomes could
have been realized. Most stories
involving this theme pertain to some battle that unfolded differently or some
person that was never born and how it
changes the outcome of human civilization.
One of the biggest tipping points in our past, I think, is the moment
when Homo sapiens almost went extinct. Granted, the outcomes favored us because we humans are still here, but I wonder what might have happened if fate were not so kind to us. I wonder if some other creature might
have plucked up the mantle of intelligence.
What would they think of us, if they had? So I’ve written you a story about such an
alternate history. A very alternate history.
--------------------------------------------------------------
“Bandoola, pay attention!” Annabelle tooted. “I’ll never finish this book report on Homo brevis all by myself!”
Annabelle’s brother threw his trunk in the air and blasted
in exasperation. It startled their pet
dodo bird, who flapped his knobby little wings in protest.
“Poor Mauritius !”
Annabelle cooed, drawing the flightless fowl closer with her trunk. She wrapped it in a wreath of her prehensile
nose.
“Ugh, who cares about Homo
brevis! Apes are so boring!”
Bandoola said. “Especially extinct ones! Matriarch Toofi let us pick any
animal we wanted, but you had to pick
Homo brevis! What is there to know about them? They were obviously too dumb to survive, so
now they’re extinct. Book report over.”
Annabelle was patient, as most Elephas sapiens girls her age tend to be, but when it came to her brother, she
always had to exhaust her will to keep her ears from flapping. She didn’t like to hear him talk about Homo brevis that way. She had a special affection for those scrawny
little apes. She even had the cast of a brevis skull in her room.
“That might not be true, Bandoola. A lot of scientists are debating now about
how smart Homo brevis really
was. If you look closely at the new
fossil evidence found in Africa , you’ll see
that they actually had very big brains.
Some scientists even want to call them Homo sapiens instead of Homo
brevis. There is evidence that they used
stone tools, too, before they went extinct.”
Shocked, Bandoola raised his trunk in the shape of a
question mark, then tooted hysterically.
Mauritius
squawked with him.
“Smart apes?!” he
bellowed. “Anna, how you imagine
things!”
Annabelle’s ears began to flap.
Bandoola grabbed his tablet and typed “Homo brevis” into Tootle. He
turned his tablet around and showed her the first image the search engine came
up with.
“Does this look like a smart ape to you, Anna?” he
said.
It was a black and white
illustration of a male brevis: bucked
tooth, eyes crossed, hunched over, grubby.
His body was bony and gaunt, like a sick animal. His skin was shriveled. He was very, very hairy.
Annabelle sighed. It was a picture she had seen many times before. An unfair artistic rendering by the famous
naturalist--- Otto von Tusque--- after the very first brevis skull was discovered.
Brevis, according to Tusque, was
the perfect example of the fact that nature makes mistakes.
“Everything about them was just wrong, Annabelle,” Bandoola said. “Just look at them. They are nothing like us.”
“But their brains,” Annabelle
said. “All of the scientists now say
that they had big brains.”
“So what? Maybe they had big heads like us, but look at
that tiny, skinny little body! And
walking on two legs? They look
ridiculous! They must have been falling
all over themselves! If it was such a
good thing to walk on two legs, why don’t other animals do it, too? We
don’t walk on two legs, do we? No! The Divine Matriarch must have made them as a
joke, or something.”
It was not the first time Annabelle
had heard these prejudiced remarks. She
was ready with a retort.
“But what about their hands?” she
said. “They have two hands to use tools. We
only have one trunk.”
Bandoola paused for a moment. Scratched his head with his trunk as he
thought.
“Does it really matter if they had
two hands…” her brother finally said.
“If they didn’t have a soul?”
Annabelle rolled her eyes. Her brother was only ever pious when it suited
him.
“The Divine Matriarch made us in
her own image, and the trunk is the channel to the heavens,” Bandoola
said, reciting scripture. “The trunk is
the one thing that no other animal on Earth has, so how could Homo brevis ever pray without it? How could they link trunks with the Divine
Matriarch if they didn’t have a trunk at all!”
Bandoola demonstrated, raising his
trunk--- his divine appendage--- into the air to link with the Divine Matriarch
in the sky, “Divine Matriarch, forgive my sister for her stupidness.”
“Bandoola!”
“What? Tell me how they could pray without a trunk?”
her brother insisted.
“I don’t know,” Annabelle said,
shrugging her heavy shoulders. “Maybe when they wanted to pray, they put their two hands together?"
Her brother bellowed in a second
round of laughter at the absurdity of the thought.
“Look Bandoola, all I’m saying is
that maybe things might have been different.
Maybe they could have lived.
Maybe instead of elephant cities and elephant societies across the world
there could have been human cities and human societies. Or maybe we might both be here together. Elephas sapiens and Homo sapiens. Living together. Thinking together. Praying together. Just think about that for a moment.”
Her brother did. There was a kind of contemplative expression on
his long face that Annabelle didn’t see very often.
“Well, they might have made good
pets,” Bandoola said, patting Mauritius's feathery head with his trunk.
“Okay, well, let’s take a break
for now,” Annabelle said. “We’ll start
up later, after dinner. Mother made
bamboo and bananas for dinner.”
“And tulips for desert?”
“Yes, and tulips for desert.”
With one enthusiastic bound,
Bandoola jumped to his feet, snatched up Mauritius the Dodo in his trunk,
then stomped away to the kitchen.
Annabelle didn’t follow him, at
first. Instead, she lumbered toward her
room. She imagined for a moment that
there was a brevis walking along side
her. She reached aside to take his hand
in her trunk, so that he wouldn’t get ahead of her. She didn’t want to accidentally step on his
frail little foot, imaginary or not. Once behind her door,
in privacy and dimness, she reached for the brevis
skull on her desk. Lifted it up in the
air to meet her eyes.
Thursday, February 27, 2014
Never Pass Up a Free Meal
Dear Ellie,
There are a host of things we worry about in here. Brain bleeds, infections, lung deterioration, necrotizing intestines... So far, you’ve dodged plenty of potential problems, with the exception of your lung issues. There is one thing that you haven’t just dodged though. Something that you’ve excelled at: your appetite.
There are a host of things we worry about in here. Brain bleeds, infections, lung deterioration, necrotizing intestines... So far, you’ve dodged plenty of potential problems, with the exception of your lung issues. There is one thing that you haven’t just dodged though. Something that you’ve excelled at: your appetite.
Many micro preemies have poorly developed intestines, so it
can take a good bit of time before they can start to eat, which means their
digestive tracts are more likely to pop open and spill their contents all over
the place. Not pretty. Two of your neighbors were born a little bit
further along then you were, but it took them a month before they ate even a
milliliter of milk. But you? You hit the buffet right out of the gate.
As of now, you are almost capped out on the amount of milk
you can eat, at your size. Your gut is
even iron clad enough to start “fortifying” your mothers milk because, sorry
honey, you are still pitifully skinny.
An Earnest Vow
Dear Ellie,
When you were first admitted to the NICU, the three of us were given bracelets to specify that we "belonged to each other." Every time we came into the NICU, the nurses would check our bracelets to make sure we were ACTUALLY your parents, rather than just baby voyeurs. That, and you don't want to come into the NICU and weep over the wrong baby, do you? We noticed that just about all of the other parents didn't have their bracelets on anymore, and since we were not just like all the other parent, we hovered over your isolette and with you as our witness, we earnestly vowed to never take our bracelets off until you came home with us! Not once!...
So, we weren't really thinking clearly at that moment about how long 4-6 months really is, and if you can somehow remember us making that promise, let me explain the subtext of that vow. Things got a little bit complicated. First, its important to consider that those little bands are made of plastic. Cheap plastic. After the first week or so it started to shred a little. Then a lot. The jagged little shards of plastic began digging into our wrists, rubbing them raw. And then they started to assume the ever so faint smell of cheese, because water got trapped in odd places and started to grow some intriguing colonies of bacteria/algae/protists. Mind you, that wasn't enough to make either of us cave in and take them off. We never once voluntarily took it off. But, well, fate did for us.
A cheap plastic band is only as strong as its weakest part, and eventually, the little-adjusting-rectangle-thingie rubbed through the tattered-thin-papery-thingie and off it came. But that wasn't the end. Your Auntie Danielle took the ID section of the old band and refashioned it into a (very masculine looking!) bracelet. At last! A band that would stand the test of time... for a few more weeks, at least. I've rediscovered that steel apparently rusts and, when thin enough, warps. So now my wrist has rusty colored indentations that smell of iron oxide.
Oh well. What would be a solemn vow if it didn't involve some element of suffering?
Wednesday, February 26, 2014
Getting Your Way
Dear Ellie,
You are never satisfied until you get your way. You've got this thing about sleeping on your belly. When you do, all is well, but when you aren't on your stomach, you flail your arms and legs furiously, furrow your brow, and cry silently until the nurses relent and put you back on your stomach. All of this commotion, of course, is bad for all of your vital stats.
You are never satisfied until you get your way. You've got this thing about sleeping on your belly. When you do, all is well, but when you aren't on your stomach, you flail your arms and legs furiously, furrow your brow, and cry silently until the nurses relent and put you back on your stomach. All of this commotion, of course, is bad for all of your vital stats.
Most of the time, this isn't really a
problem, but today you needed a blood transfusion. While they had the
line in your arm, it was necessary to keep you on your back for about 5 hours
and man, did you throw a tantrum. When the dust had finally settled and
they plunked you back on your belly, you'd taken more than a few steps backward
with your respirator progress. Oh well...
I suppose you have a few reasons to be
cranky. Your lungs are "crackly" from fluid buildup and your
weight has been very bipolar. You shouldn't be losing and gaining 10
percent of your body weight from one day to the next. Your eyelids and
chin are visibly swollen.
The Naming Ceremony
Dear Ellie,
Yesterday was your 27th day outside of the womb. That means you are supposed to be formally named. Among Hindus throughout India, you would be named on the 11th day of your life, but among the Keralans of southern India, Hindus and Christians alike, girls undergo Namakaran Sanskar (the naming ceremony) on their 27th day. Since your Grandma and Grandpa are from Kerala, then the 27th day just feels like the proper way.
I've had mixed feelings about cultural ceremonies like these because when you get older, I don't want to coerce you into an identity. You're mother and I have always been the kind of people that balk at fidelity to a specific culture. I'm a believer in your mother's perspective: "I am who I am, I don't need a culture to tell me who I am for me." For some reason though, I found myself waiting here the night before last until midnight. Waiting for your 27th day, so that I could follow the ritual's requisite and whisper your name three times into your left ear, "Eleanor, Eleanor, Eleanor."
I was even disappointed when I realized that we couldn't really undergo most of the Namakaran Sanskar. We wouldn't be tying black thread around your waist or dabbing a black dot of makeup on your cheek to, yes, "ward away evil." You can't really do that kind of stuff in the NICU, after all. I found myself wondering why I was disappointed that we couldn't. And then I realized that this wasn't the first time that I had feelings which deviated from my position about culture.
Even before your mother was pregnant with you, I found myself squirreling away little articles of that identity. Things to stash for you... just in case. Like some old English language, Indian comic books about classic Hindu stories of antiquities that I found buried in your Grandmother's closet. Or a pretty blue Saree. I've even entertained the idea of learning some Malayalam words to teach to you later. Malayalam words other than the three ones I know already. The ones that translate to "buffalo," "fart," and "poop."
I'm not sure why, but part of me wants you to have the choice to identify (maybe just a little!) with that culture born amid one of the great cradles of humanity, half a world away.
Yesterday was your 27th day outside of the womb. That means you are supposed to be formally named. Among Hindus throughout India, you would be named on the 11th day of your life, but among the Keralans of southern India, Hindus and Christians alike, girls undergo Namakaran Sanskar (the naming ceremony) on their 27th day. Since your Grandma and Grandpa are from Kerala, then the 27th day just feels like the proper way.
I've had mixed feelings about cultural ceremonies like these because when you get older, I don't want to coerce you into an identity. You're mother and I have always been the kind of people that balk at fidelity to a specific culture. I'm a believer in your mother's perspective: "I am who I am, I don't need a culture to tell me who I am for me." For some reason though, I found myself waiting here the night before last until midnight. Waiting for your 27th day, so that I could follow the ritual's requisite and whisper your name three times into your left ear, "Eleanor, Eleanor, Eleanor."
I was even disappointed when I realized that we couldn't really undergo most of the Namakaran Sanskar. We wouldn't be tying black thread around your waist or dabbing a black dot of makeup on your cheek to, yes, "ward away evil." You can't really do that kind of stuff in the NICU, after all. I found myself wondering why I was disappointed that we couldn't. And then I realized that this wasn't the first time that I had feelings which deviated from my position about culture.
Even before your mother was pregnant with you, I found myself squirreling away little articles of that identity. Things to stash for you... just in case. Like some old English language, Indian comic books about classic Hindu stories of antiquities that I found buried in your Grandmother's closet. Or a pretty blue Saree. I've even entertained the idea of learning some Malayalam words to teach to you later. Malayalam words other than the three ones I know already. The ones that translate to "buffalo," "fart," and "poop."
I'm not sure why, but part of me wants you to have the choice to identify (maybe just a little!) with that culture born amid one of the great cradles of humanity, half a world away.
Tuesday, February 25, 2014
What Care Bear Will Be Your Favorite?
Dear Ellie,
On your incubator is a blanket with Care Bears, their arms stretched wide, ready for hugs. Strangely, it happens to have all three of the bears that I, your Aunt Andrea, and your Uncle Zack had when we were kids: the yellow Sunshine Bear, the purple True Heart Bear, and the Pink Rainbow Bear. Can you guess which one was mine?... Noooooo. It wasn't the pink Rainbow Bear! Why does everyone always... never mind...
I had Sunshine Bear and he was my favorite Care Bear when I was a kid (and the very best bear in Care-A-Lot, in my humble opinion). He was bright and irrepressible. That, and wherever cynicism and negativity reared its ugly head, he'd obliterate them with his belly-beam of optimism. Aunt Andrea had True Heart Bear. True Heart Bear was the cofounder of Care-A-Lot, which is an admirable achievement. And what was metal head, Uncle Zack's favorite Care Bear? Which one was his as a child? That's right. Rainbow Bear. While Sunshine Bear was an optimist and True Heart Bear was a leader, Rainbow Bear was a, uhm... I don't know... a social justice pioneer?
Anyway, Uncle Zack loved Rainbow Bear with all of his heart, until he decided that Rainbow Bear didn't reflect well on his budding male adolescence. One day, I found Rainbow Bear (and his stuffing) jammed underneath a dresser. It was like something straight out of Edgar Allen Poe. I felt very terrible for Rainbow Bear and tried to pull him out, but I was too small at the time to free him. So instead, I doubled my love for Sunshine Bear and promised him that I'd never forsake him. And you know what? To this day I'm not afraid to admit to the world that Sunshine Bear kicks ass.
What Care Bear will be your favorite?
Monday, February 24, 2014
Finding the Energy
Dear Ellie,
It was a long day at work and I finished at 10:00 P.M. My feet hurt and my vision is a little bit blurred, but it doesn't make sense to go to bed yet. Not until I've seen my girl. Being tired isn't a good excuse for missing the things that are important to you. If you have a purpose, the energy will be there when you need it. Even before you were born, even before I was an adult, I told myself that I'd always have the energy for you. I'd tap into some reserve of vitality so that I could read you a bedtime story or carry you home or sneak into your room and kiss your forehead, even if you never awoke and saw that I was there.
I can't promise you, though, that my letters to you will be as lyrical at a late hour like this!
It was a long day at work and I finished at 10:00 P.M. My feet hurt and my vision is a little bit blurred, but it doesn't make sense to go to bed yet. Not until I've seen my girl. Being tired isn't a good excuse for missing the things that are important to you. If you have a purpose, the energy will be there when you need it. Even before you were born, even before I was an adult, I told myself that I'd always have the energy for you. I'd tap into some reserve of vitality so that I could read you a bedtime story or carry you home or sneak into your room and kiss your forehead, even if you never awoke and saw that I was there.
I can't promise you, though, that my letters to you will be as lyrical at a late hour like this!
The Smith Skinny
Dear Ellie,
I was a bit nervous coming in this morning
because when you were weighed last night, you had lost 3 ounces, leaving you at
1 pounds 14 ounces. Yikes. I was simultaneously relieved, though,
because all of that extra swelling was the result of excess fluid, I just
wanted to be sure that all of the weight loss was the result of fluid purge
rather than some other dubious variable.
I think we now have a pretty good baseline
of where you ACTUALLY are as far as weight is concerned. Looks like you
hadn't hit 2 pounds, after all. I never thought I'd feel this way, but I
find myself wishing you hadn't inherited the Smith Skinniness.
The North of Our Compass
Dear Ellie,
Your mother and I have spent a month and a half in the
hospital now but we'll be here a lot longer. For the first two weeks,
when your mother was on bedrest, we felt like foreigners. Being in
the hospital drained our vitality. Wore down our souls. We did
everything we could to try to make the hospital feel like home. We put up
life sized printouts of our cats on the furniture and brought food and movies
and books from the house. However, all of those things just generated the
illusion of home. To your mother and I, home is the North on our compass.
The place that always tries to draw you back. The longer we are
away from it, the stronger that tow becomes. By the end of your mother's
bedrest, we were both weathered and tired from resisting it.
But things changed very quickly once you
were born. The gravity of home was reversed, and whenever I left the
hospital for more than a few hours, I felt drawn back to it. Being away
from you is like swimming against a current.
We rarely visit our house anymore.
When I drive up to it, I feel as though I need to knock on the door.
As though I need to ask permission to enter from the family that lives
there. Once inside, it seems foreign. There are a few glimmers of
memories. Sunny weekend mornings and evenings over the stove. But
when I leave, I don't miss it like I did before.
When I'm back at the NICU, I know where we belong. Home has become wherever it is that YOU are. You are the North of our compass.
When I'm back at the NICU, I know where we belong. Home has become wherever it is that YOU are. You are the North of our compass.
Sunday, February 23, 2014
The Day You Were Born
Dear Ellie,
I always thought a lot about the day that
you'd be born. I rehearsed it in my head, over and over again. I
wasn't going to be like all of those other dads. The ones that are
nervous and pale faced. Nope, not me. I'd be standing next to your
mother, grinning and cracking jokes between contractions. I'd say
things to the doctors and nurses to make them uncomfortable, like: "So
doc, is this the 1213th time you've delivered life's 'greatest miracle' or the
1214th??" or "Don't worry doc. You don't have to say that the
baby looks like me when it comes out. I know you guys just say that to
encourage daddies to stick around."
Your mother would be the only one that
thought they were funny, which would make them inside jokes, and she'd laugh
for just a second before the next bout of pain arrived. Your mother would
grit her teeth like a stoic, though. She wouldn't wail melodramatically
like all of those mothers on TV. I'd smile and stroke her forehead.
And I wouldn't lose the blood in my face and pass out like a wuss.
No way. Why would I? It would be the happiest day of my life.
I would probably cry happily, though, and I'd be okay with it. When
it was all over, I'd hold you in my hands, you'd scream something that
translated loosely to "If you don't have mammaries, then you'd better pass
me to someone that does!" Later on, when you were drunk and drowsy
from all the milk, I'd give the whole holding thing a second shot. I'd
rock you slowly, singing lullabies I'd been preparing for months and months. At that moment, I would know that I was a father.
Well, things didn't really happen that
way.
Your mother began her bedrest at 22 weeks when the bleeding started. She would be on her back for half a month. We were hoping it would be a lot longer. 28 weeks gestation.
The third trimester. That was our next goal for you. That's
where all of the dangers of extreme prematurity began to taper off. Of
course, we never made it that far. Not even close.
If you had told us an hour before the
moment you were born that you would be arriving, we would have said,
"What? So soon?" One minute your mother was sitting in a
bed and the next she was off to the operating table with barely a minute's
warning. As I put on scrubs, I watched as she disappeared behind the surgical doors. I was so dazed at that moment I tried to put a shoe-slip on top of my
head. I couldn't get the terrible numbers out of my head. The odds
of your survival. Nothing so important to me had ever come down to the
flip of a coin. How close were you to being born at that moment? 10
minutes away? I threw my thoughts ahead 4 more months. To that time you were SUPPOSED to be born. I'd be holding your mother's hand. Waiting for those last few
pushes. Waiting in tense anticipation to see your face.
When I arrived in the operating room, the
surgeons were already to work. There were slicks of blood and amniotic
fluid on the ground. I arrived at your mother's side. Her teeth
chattered. Her face was almost green. Your mother didn't wail
melodramatically like on all of the TV shows. I held her hand. I
smiled behind the mask and stroked her cold forehead. And oddly, I ended
up not being like those other dads, after all. I wasn't
pale faced. I didn't feel dizzy. Maybe I should have. After
all, it was the scariest day of my life. I cried tears of sadness, and I
was okay with it.
Then there was a squeak and a gurgle.
Some feeble sound. Your mother's eyes shot open, alert, even though they had been wearied
and empty just a moment before. "Is Ellie okay?" she asked me.
I don't remember what I said, because I
didn't know the answer.
The doctors took a tiny, squirmy mass
of flesh to a table. I was surprised how little blood there
was on you. I didn't see much of you, for awhile, just the occasional
hand or foot stabbing at the air. I listened closely to the doctors and
nurses for any clues about your condition. Then, they wheeled you out in
your isolette, and a nurse called me out of the operating room.
You were parked there in the hallway
between surgery and the NICU. That moment weighs heavily on my memory,
but strangely, I don't remember it like a picture. I just remember seeing
your face, and being shocked by how much you looked like me when I was a little
child. I always thought you would look--- wanted you to look--- like your
mother.
The nurse asked me if I wanted to touch
you. "Want or should?" I wondered. I declined because I
didn't want to hurt you. The nurse insisted, and I was secretly glad that
she did. I reached through the isolette and put one finger on your
forehead, as gently as I could. You seemed big to me, then, because you
were infinitely larger than I had ever seen you before. I told them to
hurry, and you were gone.
I was plunked in a waiting room as your
mother was being stitched up. I wondered whether you would be in my arms
soon. Whether I'd be singing you my lullabies. I hoped with all my
heart that I wouldn't. I didn't mind not having that moment anymore.
I didn't mind not feeling like a father, because if I were afforded the
right to hold you at that moment, it would mean that I wouldn't be a father for
much longer. It would mean that you were dying. That you were so
far gone that it didn't matter whether you were touched or held by your parents
or not.
I saw in my head how it would play out.
You would be sedated. Your mother and I would take turns rocking
you. I'd sing my bittersweet lullabies about a future that would never come.
I'd choke between verses. A tear might splash on your head, and you
would squirm, and I would tell you I was sorry for hurting you. You would
gasp for breath, fight for life, until you turned pink then purple then blue.
We wouldn't know when to let go or when to stop singing, even after your
breaths had stopped and your chest had grown cold. You would haunt us
forever. We'd want it that way.
But today, you are alive. I don't
think about the day that should have been your birth, any longer.
And I don't mind having missed that moment when I would hold you in my
arms and know, right then, that I was a father. If I just knew for
certain that you would live, I could watch you indefinitely from afar or from
inside an impenetrable sphere. When I look at you now, I'm willing to wait forever.
Out of the Woods, Into the Brush
Dear Ellie,
I came in this morning and your respirator settings had inched again in the right direction. Your feedings are up and I think you are "legitimately" 2 pounds, now (2 pounds, 1 ounce). Your chronic lung disease will probably stalk you for years, but I think we've reached a point where we can reliably expect that the infection in your lungs is under control. The imminent danger has passed, I think, and now we are back to scrutinizing smaller things. At least, this is what I hope...
Creature of Technology
Dear Ellie,
Humans have walked the Earth for thousands of years, and in that
time, they have changed so little. Our brains are the same. The
things that we feel are the same. Even the way that we are born is the
same. Some people might think this is a good thing. That there is
an essential "humanness" that should, and must, remain the same.
Isn't this the most common theme in science fiction movies?
Humankind creates or aspires to something that is beyond even themselves.
A clever machine or automaton. Or some person tries to step beyond
what it means to be only human. However, regardless the characters or
plot, these stories always end the same way. They convey a simple theme:
"To deviate from what it is to be essentially human is a mistake."
I've never agreed with that message. I've often empathized with the creations in these stories, those creatures of technology, because
they are always the ones that strive to be something more. I've suffered
with the Frankenstein Monster. I've seen wisdom in the egalitarian nature
of the Borg. I've nodded sensibly with the sterile machines that created
The Matrix, and shaken my head at those smelly, self-destructive humans that
keep trying to escape from it so that they may get another chance to muck the
world up a second time.
No, I don't hear wise words in the theme of those stories. I've always thought that we should try to be more than what we are. That thousands
of years of accumulated human history and knowledge should make us something
better than what we started as. That each new person born should be a
product of that progress. A person that could never have come before. I've never seen a
case first hand where this has ever been true. But that was before I saw you.
When you first blinked into existence, it was in a lab. In a
"petri-dish." We exhausted every imaginable technology and
technique to give you life. A thousand years ago, a hundred years ago, ten years ago, this never would have
happened.
When you were born, it was 4 months too early, but you lived, only
because we exhausted every imaginable technology and technique to give you
life. A thousand years ago, a hundred years ago, ten years ago, this never would have
happened.
Some people might look at you and think that all of this effort,
all of this knowledge and technology that was necessary to keep you alive, is a
sign of some kind of frailty. That because you are some deviation from
what has always been human, you are something less. But I think its the
opposite. I think it makes you more than human. In a way, you are
an avatar of all the human knowledge we have ever accumulated, thus far.
You are a being, of a kind so few in number, that has never
existed before this moment. You are a creature of technology, and that is
something to be proud of.
Saturday, February 22, 2014
The Things That Happen in the Night
Dear Ellie,
Today, like every day since I learned about your lung infection, I sat outside of the NICU door at 8:59 A.M. before the NICU was open and wondered in what direction you went during the night. Will I come in and find you sliding further into illness? Or will I check the respirator stats, the metric of your progress, and see that your lungs are stronger than the day before?
Today, like every day since I learned about your lung infection, I sat outside of the NICU door at 8:59 A.M. before the NICU was open and wondered in what direction you went during the night. Will I come in and find you sliding further into illness? Or will I check the respirator stats, the metric of your progress, and see that your lungs are stronger than the day before?
Today I walked in and as always, I
squinted from afar at your vitals monitor. Saturation normal. Heart
rate normal. Good, but not very meaningful. Then I came closer.
Checked your oxygen settings: better than last night.
Sigh of relief.
Starting to Look Like a Baby
Last night, I
began to notice a few things about you. Your skin is pink now, not
translucent. We can no longer see your heart beating through your chest. Your limbs are fatter, and sometimes... sometimes... your
eyes are open. I realized that you were starting to look like a baby for
the first time.
Friday, February 21, 2014
"Well, It Could Be Worse"
Dear Ellie,
Every micro-preemie is born with a thing called Respiratory Distress Syndrome. Their lungs are simply too young to function properly on their own. Over time, as a micro-preemie grows, they either start to breath more by themselves or their lungs begin to accumulate damage. After a certain period of time without enough lung progress, Respiratory Distress Syndrome gives way to Chronic Lung Disease. That’s what you were diagnosed with today. Not exactly a good thing to develop along side a lung infection.
Every micro-preemie is born with a thing called Respiratory Distress Syndrome. Their lungs are simply too young to function properly on their own. Over time, as a micro-preemie grows, they either start to breath more by themselves or their lungs begin to accumulate damage. After a certain period of time without enough lung progress, Respiratory Distress Syndrome gives way to Chronic Lung Disease. That’s what you were diagnosed with today. Not exactly a good thing to develop along side a lung infection.
For the past few days, adjusting your respirator support has been
a tricky proposition because the oxygen saturation level in your blood has
behaved unpredictably. One minute, an
alarm will go off because your saturation is too low, and 30 seconds later,
another alarm will sound because your oxygen levels are too high. If the respirator settings are programmed too
low, then you’ll desaturate too often and run the risk of suffering brain
damage. If the respirator settings are too
high for too long, then you face the risk of retinopathy and blindness.
I was planning a celebratory letter when you hit 2 pounds. Today, you hit that milestone, but I didn’t clap my hands. You wouldn't have hit 2 pounds had you not begun to swell with fluid in your extremities. Before, I was always hoping that your weight
would go up. Now, I just want it to dip
back down.
The Girl in the Sphere
Dear Ellie,
The strangest thing I've experienced in the NICU is immense love that I'm unable to show. At this early age, the sad truth is that you have almost no understanding of my existence. Your brain is simply too nascent, too young. You are carried along in life by strange technology, forever unaware of the people who love you and yearn for you. At all times, I wish--- I ache--- to reach through the acrylic barrier of your isolette and through the nascency of your mind and somehow let you know the love in my heart.
How strange that must be. To be you. This notion got me thinking about another story. A story about a girl not too dissimilar from you. A girl that travels about the world in a sphere. A girl that sees many beautiful things, but has never shared a word with another soul. A girl, unaware of how much she is loved.
The Girl was curious. She had long hair and gray eyes.
The Sphere was silent. It was 8 feet tall and clear like
glass.
The Girl had only ever been inside of the sphere, so at first, she
was happy. The Sphere traveled
all across the world, and for the longest time, the only thing The Girl could
remember was floating above snowy peaks.
Rolling through the clouds.
Plunging through the oceans. The
Girl was only a spectator of it all, but she didn’t know what freedom was, so she
watched and marveled and was never sad.
At first, she didn’t even know that she was a girl or that she was inside of a sphere at all, except for the fact that The Sphere cast a spectral reflection of The Girl, wherever she looked.
Over time though, the sphere’s wanderings brought them close to
the cities of men and of women. And then
the Girl in the Sphere saw another girl like herself. A girl that was not in a sphere. And so The Girl came to
understand that she was a girl too, like the one on the
outside. Yet the two of them were different, also. She watched that girl
carefully. Watched how she moved without confinement. How she could reach out to things in the
world. How she could pick objects up. Set objects down.
The Girl in the Sphere wondered why
she couldn’t do things to the world like the other girl. The Girl in the Sphere reached out to a thing on the ground,
but her hand only rolled across The Sphere’s smooth surface. That’s when she understood that herself, and The Sphere, were not the same. She blurted a sound to the girl on the outside, but the girl didn’t see
her, or hear her. The Sphere, and The Girl within, were invisible and mute to all things.
The Girl felt something deep inside that she
hadn’t felt before. Something that made
her heart clench and eyes burn. As soon as
she felt it, The Sphere moved on.
The Girl in the Sphere would see many more places with people, as the years went by. Some places were magnificent
cities with towering skyscrapers. Others
were vast slums, where people were frail and hungry and sick. The Girl came to know that people in the
world needed things. Like food and water.
And if people didn’t get these things, they would slowly whither away. But The Girl in the Sphere never went without these things. Somehow, she realized, The
Sphere gave her all that she needed.
Almost all that she needed.
Eventually, after hearing a thousand different languages in a
thousand different places, The Girl invented a patchwork language for herself. And with that language, she spoke to the only
thing that might be able to hear her. To the thing she knew most intimately.
“Did you see that, Sphere?” the girl would say, or: “I wish we could go back
to the ocean. Can you take me to the ocean, Sphere? Or to the mountain that
spat fire? Or bounce along the clouds,
again?”
Now that The Girl had discovered language, she talked to The
Sphere always, but The Sphere was always silent.
No matter what The Girl said, it never seemed to change what The
Sphere did, or where it went. Sometimes,
though… maybe… perhaps… The Girl would feel a certain way for a time, and The Sphere would spin about and change its course.
The Girl wasn't sure why but she was happy whenever that happened.
At all times, the Sphere was always moving.
Sometimes quickly, like a bullet.
Sometimes slowly, like a turtle.
There was only three times that The Sphere ever stopped.
The first time was near a window. Inside the window was a Mother and a little Child. The Child slept, his head turned up at The
Mother as though gazing through closed eyelids.
The Mother stroked his head and spoke only in a whisper: “I
love you.” The child's eyes opened. He didn't speak, but his eyes spoke for him, whispering back that same phrase. The Girl had never heard those words, but she knew right away what they meant.
The Sphere hovered still at the window, lingering. Was it watching them too, with The Girl?
The Sphere hovered still at the window, lingering. Was it watching them too, with The Girl?
The Sphere eventually drifted away and The Girl in the Sphere thought about
what she had seen, and heard. She put
her hand on The Sphere. Held it
there.
“I love you, Sphere,” The Girl said. And then The Girl listened closely. She held her ear to every part of The Sphere. Ran her hands along every latitude, looking
for some crack, some blemish, some spot that might be a word. But there was
nothing. The Sphere was silent.
The Girl cried.
She was sad for a very long time and the sadness didn't go away. That is, until the day that The Sphere spun
about and changed its course. The Girl
looked up at the Moon, a faint crescent in the daylight. And then The Sphere and The Girl went up. And up.
And up. The blue of the sky
slowly faded until the stars pierced through the heavens. Below them was the world. And it grew smaller. Above them was the Moon. And it grew bigger. And, then, suddenly, The Girl realized that
the Moon… was a place.
“Thank you Sphere!” the girl shrieked, but The Sphere was silent.
The Sphere went faster and faster until at last, The Girl and The
Sphere had arrived. They bounced along
the Lunar landscape. Rolled through its
craters. And The Girl was happy again.
In time, once The Girl and The Sphere had explored the Moon, they
returned to the Earth. Some time later, The Girl began to wonder. Why did The Sphere go to the
Moon? Did it go because it was bored?
Because it sensed her sadness? Or
did it go for no reason at all? Did the Sphere ever do anything because of the way that she felt? Did it know that she even existed?
Either way, whenever The Girl looked up at the sky and saw the
Moon, she understood that the Universe was far bigger than she ever thought
it was before. Were the stars themselves places that The Sphere might take her, one day? The thought was enthralling. So for awhile, The Girl forgot her
sadness. Until The Sphere stopped for a
second time.
They were in a park, in a city, when The Sphere rolled to a halt. On a bench was a Young Man. A simple, quiet Young Man. He sat there, book folded on his lap,
turned down. Around him were other men
and women bustling about. There were animals
running. Trees swaying. But the Young Man didn’t move. He only sat still. He could do all of those other things that
the men and women did if he wanted to, but he chose to watch the world instead. To observe.
It seemed to The Girl, perhaps, that the Young Man was a lot like
her. The Girl pressed her hands to the
invisible barrier that separated them. Her heart was
stirred by a strange feeling as she looked at him, but before she could understand it, The Sphere
moved on.
“No, Sphere, stop!” she cried in her patchwork language, but The
Sphere didn’t stop.
After they had left, she thought often of the Young Man. Wondered why they couldn’t sit in the park and observe the things of the world, together. And then she thought about all of the people of the world. How they spoke together. Walked together. Experienced together. But The Girl had never said a thing to anyone, and never had a thing spoken back to her. She had thought many times of many people, but no one, not once, had ever given her a thought. Not even, so far as she knew, The Sphere.
For the first time, The Girl understood what loneliness was. It made her rediscover her sadness, and it was deeper than before.
For the first time, The Girl understood what loneliness was. It made her rediscover her sadness, and it was deeper than before.
The Girl forgot how long she had been sad, but one day, The Sphere turned skyward a second
time. They went faster than
they ever had before, because the places they were going were far further than the Moon. They plunged through the Sun. They skipped along the rings of Saturn. They even rolled leisurely across Charon,
moon of Pluto, and gazed back on the pale blue dot that was the Earth. But The Girl had grown listless in her
loneliness. She never even raised her head. Such marvelous things were meager, when witnessed alone. No place that The Sphere went could lift The Girl from her sadness.
She could have believed that The Sphere sensed her despair. That it was trying to make her happy. But she preferred to believe that it
didn’t. It was just a thing. Some passionless fluke of the cosmos that had swept her up long ago, like the wind. It never spoke its feelings, because it never
had them to begin with.
“I hate you, Sphere,” The Girl said bitterly. She thought the words, too, in case that was the only way that The Sphere could hear her.
So The Sphere spun through the solar system, slowly, back toward the Earth. It came back through the
atmosphere and the clouds. Drifted over forests
and rivers and snowcapped peaks. Took a
dip in the ocean. And then it finally
came to the city with the park, and The Sphere stopped for the third time. The last time.
The Girl raised her head only when she felt a thing she had never felt
before. It was a soft thing. A cold thing, whisking through her hair. The wind. She reached around her and above her and
beneath her. At first, the glass around her was smooth. But then she noticed a crack. A hole. She drew back her hand. The crack slithered across The Sphere's equator, then expanded like a river breaking off into tributaries. Soon, the cracks were everywhere, and in one terrible crash... The Sphere shattered. Before the shards could ever strike the ground, they turned to smoke, like water turned to vapor.
The Girl felt the grass beneath her feet. Breathed the air. She reached around her, beneath and above, but The Sphere was gone.
For the first time, she didn't have to ponder what The Sphere had meant. It hadn't grown tired of her or wanted her gone. It was never some fluke of the cosmos that had swept her up like the wind and was now leaving her, just the same.
The truth was, in all of her journeys, The Girl had never been alone.
For the first time, she didn't have to ponder what The Sphere had meant. It hadn't grown tired of her or wanted her gone. It was never some fluke of the cosmos that had swept her up like the wind and was now leaving her, just the same.
The truth was, in all of her journeys, The Girl had never been alone.
She cried tears of joy and grief, now that she finally understood. The Sphere had said “I love you,” in the only way it could.
Thursday, February 20, 2014
"How Having a Baby Changes Your Life"
Dear Ellie,
I'm still getting e-mailed "baby updates" from BabyCenter.com. I could disable the updates, I suppose, but its an interesting mental exercise to keep reading them. Usually, they send weekly updates describing what the fetus looks like in utero, the changes taking place during pregnancy, and things of that nature. Whenever they arrive, I like to think of what I'd be doing right now, if you were still tucked inside your mother and we weren't all in the NICU. Every day is a weird dichotomy between where we thought we'd be and where we are. Every day has a parallel existence. When I wake up early in the morning, in that daze between sleep and wakefulness, sometimes I wonder which one I'm in.
I'm still getting e-mailed "baby updates" from BabyCenter.com. I could disable the updates, I suppose, but its an interesting mental exercise to keep reading them. Usually, they send weekly updates describing what the fetus looks like in utero, the changes taking place during pregnancy, and things of that nature. Whenever they arrive, I like to think of what I'd be doing right now, if you were still tucked inside your mother and we weren't all in the NICU. Every day is a weird dichotomy between where we thought we'd be and where we are. Every day has a parallel existence. When I wake up early in the morning, in that daze between sleep and wakefulness, sometimes I wonder which one I'm in.
Today's BabyCenter update was a bit of a
switch from the usual, though. "How Having a Baby Changes Your
Life," it was called. I paused. There was a terrible
disjunction between what it meant to me and what it was supposed to mean. A bitter,
unintentional irony. I thought of your condition, now. About how
the prospect of your death had stepped away from abstraction and again toward
reality. There was an unwritten subtext to that title. It was:
"How having a baby will fill your life." But to me, it sounded instead like: "How having a baby and seeing her die will empty it."
I clicked the e-mail against my better
judgement. There was a picture of a mother in a nursery at home.
She was cooing over a plump little baby. A crib was in the
background. Soft, white light spilled in through the window. It was a
painful thing to look at, because I had imagined it in our home so many times
before, and then seen it disappear.
When we were house shopping years ago, we
looked for a house with one more room than we needed at the time. One day, we
would need a nursery, after all. When we closed on the right place, we
didn't bother to furnish that room because wouldn't
we be putting baby things in there eventually, anyway? As the years went by and
no child came, though, it became harder to go into that room. That room
where the plump little baby was supposed to be. The room that was
supposed to have the crib and the soft sunlight. Going in there and
imagining those things was like imagining rain in a desert. A cruel
mirage.
There was a few times where it didn't hurt
to be there, and we even decided to fill it with a few of the things that should be there. Like a little
newborn onesie. We did that kind of thing during those tiny periods of
time when your short-lived siblings blinked in and out of existence.
Kindling of humanity, promising hope, then quickly sputtering away.
The room became a place to go when we were
sad. Or wanted to be sad. But most of the time it was a place to
avoid. An emotional black hole sealed behind a door. The baby
things we were so careless to buy became fetishes of our grief, so we buried
them in that place deep in closets or in the bottom of drawers.
Flutter of Life
Dear Ellie,
I could never feel you kick when your mother was still pregnant. I tried, over and over again. One time, the OBGYN checked for a heartbeat for a just a brief moment and he said, "Oh! Was that a kick?" I grinned and pretended that I wasn't jealous. It was frustrating, but I didn't really mind. In the third trimester, I was sure I'd have plenty more opportunities to feel you kick. But that wasn't true. There was only one time I ever felt you kick.
I could never feel you kick when your mother was still pregnant. I tried, over and over again. One time, the OBGYN checked for a heartbeat for a just a brief moment and he said, "Oh! Was that a kick?" I grinned and pretended that I wasn't jealous. It was frustrating, but I didn't really mind. In the third trimester, I was sure I'd have plenty more opportunities to feel you kick. But that wasn't true. There was only one time I ever felt you kick.
It was the night before you were born. Your
mother was bleeding in the hospital bed. We knew you were coming and we knew you might not make it. While I held her, I felt a tiny little
twitch. Like someone flicking my hand. Nothing has ever been more
bittersweet. I wondered to myself:
"Is this the only time I'll feel your little flutters of life?"
Klebsiella pneumonia
Dear Ellie,
Your mother and I were holding out some hope that the lactose fermenting, gram negative bacteria found in your lungs was perhaps something benign. Not one of the virulent, nasty, baby killers. It wasn't. It's a Klebsiella, probably Klebsiella pneumonia. The name itself would clue anyone in on how dangerous it can be. Pneumonia is a bad thing for anyone to have, but someone with a practically non-existent immune system? When we first came into the NICU, we were told that two major things kill babies in here: infections and ruptured intestines.
Your mother and I were holding out some hope that the lactose fermenting, gram negative bacteria found in your lungs was perhaps something benign. Not one of the virulent, nasty, baby killers. It wasn't. It's a Klebsiella, probably Klebsiella pneumonia. The name itself would clue anyone in on how dangerous it can be. Pneumonia is a bad thing for anyone to have, but someone with a practically non-existent immune system? When we first came into the NICU, we were told that two major things kill babies in here: infections and ruptured intestines.
I'm watching your oxygen support as it slowly inches
upward. Infected lungs can't breath as well, after all. And where is
that fiery little spirit, those flailing arms? It's a scary time.
When I Say: "My Daughter"
Dear Ellie,
A few minutes after you were born,
I remember a nurse told me, "You'll be able to see your daughter in the
NICU once she's stable." At first, the comment didn't register. Didn't make sense.
"My what?" I thought.
"My daughter? But I don't have a daughter, not yet..."
For some reason, some primitive
part of my brain wasn't relenting to the idea that I had a daughter, which was
peculiar because I had wanted you since I was a child, myself. All my life, I've told
people I was going to have a daughter one day, but it was always accompanied by a
future tense. So when the nurse referred to my daughter, there was a
tickle in my brain. Like the furniture was being rearranged in my head.
It felt a lot like that moment when we first learned you were a girl.
Suddenly, the idea of YOU in my mind began sprouting all of those
adorable, feminine gender pronouns. "Her."
"She."
Still, after you were born, I was reluctant to use the term "my daughter."
I couldn't understand why, not completely. For awhile, whenever I
visited you, I'd tell people, "I'm going to the NICU" instead of "I'm going to the NICU to see my daughter." The way I said it made it sounds as though I were going there to get a sandwich and some fries.
Slowly, I moved toward using the term "baby."
"I'm going to see the baby." "I've got a baby in the
hospital." It was comfortably ambiguous. Yesterday evening, though, I finally said, "My
daughter." I didn't really think about it that hard. I didn't
even notice. Later, while I was walking to the hospital, the phrase came
back at me and it seemed like such a happy, wonderful phrase. But it also
felt like a wound reopening. Like staring into the sun on a beautiful summer day.
"My daughter." Whenever you have a "bad
day," I wonder how much longer I will be able to say it.
Wednesday, February 19, 2014
A Homeless, Penniless, Limbless Torso
Dear Ellie,
The bacterial culture came back and... there is an infection in your lungs. I'm glad I teach biology, because it helps with these sorts of thing. There are basically two important kinds of bacteria in this case: Gram negative and gram positive bacteria. Gram negative tends to be resistant to antibiotics, given the unique environment around their cell membrane and their ability to swap genetic information with other bacteria. The other type, gram positive, isn't so scary. Unfortunately, you've got the first one. The nasty one. The kind of bacteria that tends to cause pneumonia and kill babies as little as you (and bigger). But we haven't officially talked to the doctors about it yet, so we'll see.
The bacterial culture came back and... there is an infection in your lungs. I'm glad I teach biology, because it helps with these sorts of thing. There are basically two important kinds of bacteria in this case: Gram negative and gram positive bacteria. Gram negative tends to be resistant to antibiotics, given the unique environment around their cell membrane and their ability to swap genetic information with other bacteria. The other type, gram positive, isn't so scary. Unfortunately, you've got the first one. The nasty one. The kind of bacteria that tends to cause pneumonia and kill babies as little as you (and bigger). But we haven't officially talked to the doctors about it yet, so we'll see.
To make matters worse, when your mother
checked in on you this morning, your arm with the PICC line was nice and
swollen, like one of those big hands that people put on at sporting events.
I might be imagining things, but it just doesn't seem like you move
around as much as you did before...
I find myself playing a game with myself,
again. It was a mental game I played a lot in my head back when you first showed
up at the NICU. I haven't formally named it or anything, but you might
call it: "What I'd trade." Basically, assuming there was some
kind of agency to negotiate with, I'd ask myself what I was willing to give
away to insure that you would live. At first, I'd start offering up the
small stuff. All of the money in our bank account? Chump change.
Our house? Our Cars? Our property? Material things come
and go, so it would seem like a small price to pay. What about an index
finger? I'd give away the left one first in a heartbeat, since I click
the mouse with my right finger, but sure, I'd give away my right one too.
What about my toes? Honestly, I barely even notice them down there
half the time, so let's throw them in, too. I go on and on and on until
my wager starts to look like a grizzly, gory pile of gold and body parts.
At no point does anything seem too big to offer.
After a few minutes of this mental
exercise, I'm very quickly a homeless, penniless, limbless torso.
Tuesday, February 18, 2014
Innocence Isn't Lost
Dear Ellie,
Don’t ever grow up too much or lose your “innocence.” You can keep the virtues of childhood while not also being ignorant of the world. I’ve always hated the way that adults talk about “innocence.” It’s spoken of as though the vibrancy and curiosity and purity of childhood are things that must be shed in the transition from child to adult. I’ve watched it happen so many times, too. As I grew up, I watched almost all of my childhood peers disappear into the chrysalis of adolescence and come out BORING adults. Just remember Ellie that innocence isn’t simply lost. It is abandoned because of the choices people make. You can always keep it if you choose to.
Don’t ever grow up too much or lose your “innocence.” You can keep the virtues of childhood while not also being ignorant of the world. I’ve always hated the way that adults talk about “innocence.” It’s spoken of as though the vibrancy and curiosity and purity of childhood are things that must be shed in the transition from child to adult. I’ve watched it happen so many times, too. As I grew up, I watched almost all of my childhood peers disappear into the chrysalis of adolescence and come out BORING adults. Just remember Ellie that innocence isn’t simply lost. It is abandoned because of the choices people make. You can always keep it if you choose to.
Why is the Day so Long?
Dear Ellie,
You are still gaining weight (1 pound 13 ounces!) but the doctors think that you might have an infection. Your respiratory issue is likely the result of bacteria in your windpipes since that respirator causes irritation and creates a nice goey, hospitable environment for undesireable microbes. Also, that cyst in your brain is still there. "Don't worry about it because there's nothing we can do about that at the moment," the doctors tell me. Is it weird that this comment does for me the exact opposite of what its meant to do? It's back to the waiting game, then. Why is the day so long?
You are still gaining weight (1 pound 13 ounces!) but the doctors think that you might have an infection. Your respiratory issue is likely the result of bacteria in your windpipes since that respirator causes irritation and creates a nice goey, hospitable environment for undesireable microbes. Also, that cyst in your brain is still there. "Don't worry about it because there's nothing we can do about that at the moment," the doctors tell me. Is it weird that this comment does for me the exact opposite of what its meant to do? It's back to the waiting game, then. Why is the day so long?
Far Spirit and the Soul Kind, Part II: A Soul Kind is Never Alone
Far Spirit and the Soul Kind, Part I: A Girl Named Chree
I will tell the story of Chree, and how she lost her family, but
first let me tell you about the Soul Kind.
The Soul Kind have intelligence like we do, but that’s not what they
call it. They call it the Soul. They have never met other creatures on their
world that have Souls, and that is why they call themselves Soul Kind. It’s
kind of like how we humans call ourselves Homo sapiens: The Wise Human. We have named no other creatures sapiens
except ourselves just like Soul Kind have named no other creatures Soul. If Chree met you, she might think you smelled
bad, but she would still tighten her cords and cables in glee at having met
another creature with a Soul.
There are two more important things to know about the Soul
Kind. The first is that they don’t make
tools the way that we do. We make tools
from things that we pull up from the ground or things that we chop from trees,
but the Soul Kind can’t. If they try,
their Thorn Mothers disapprove and slurp the Soul Kinds’ tools up with their
tongues and spit them out. Instead, the
Soul Kind make tools from something very,
very different.
And that brings us to the second important thing about Soul Kind:
they don’t die the way that we die. When
we die, we disappear from this world and leave our families behind. Our bodies turn to dust and go back to the
ground. But when a Soul Kind dies, they
stay in their world and stay with their families. Their cables and cords wiggle apart from one
another, but remain intact. And before a
Soul Kind dies, they give of their bodies to their daughters and sister, aunts
and mothers, and these parts of their body live on as “spirits.” Then they make these body parts into all kinds of useful tings. Spirits: that’s what Soul Kind call their
tools. And Soul Kind love the spirits of
their departed family even more than when they were alive.
If Soul Kind saw how we treated our tools, our spirits--- like a hammer or a screwdriver--- they would be very
confused. “How can you simply create family from things you find on
the ground?” they might pluck. “Why do
you not cuddle with your spirits? How
can you leave them places, cold and alone and in tool boxes?
They are not simply things to be used,
but things to be loved.” They would look
at the vast civilization that we have made, filled with our instruments--- our
spirits--- and be bewildered by the fact that we could ever still feel lonely.
This all might seem strange to you. Frightening even. But consider how sad you would be if your
grandmother died. How much you would
miss her and wish that she were with you.
She would feel very distant from you.
But now imagine, instead, that you are Soul Kind. If your grandmother died, she wouldn’t be
further away from you. She would be closer.
Wherever you were, wherever you went, she would go with you and help you
on your way. Her cable sheath could warm
you like a blanket on cold nights. You
could use her grasping cord like a whip, or wield one of her springing cords as
a sling shot so that you could hunt the many delicious creatures that skitter
across the land. And if you still felt lonely--- if you still missed
her--- you could pick up her speaking cords and pluck lullabies in her voice. You would be a very lucky Soul Kind indeed if
she gave you her voice. A Soul Kind’s
voice is the most treasured spirit one can receive.
How mighty a Soul Kind is, how much they were loved by their
families, can be measured by how many spirits they carry with them. How many tools they have to wield, given to
them by the Soul Kind that loved them.
Every Soul Kind, young and old, is wreathed in the spirits of their
family, and it gives them a kind of comfort that you and I could never
know. But this is where Chree’s story
becomes sad, for Chree cannot carry spirits of her own, because her family and
Thorn Mother were eaten by The Gorger, that terrible beast of infinite size and appetite. Chree's body is
naked and bare. If another Soul Kind
were to give her a spirit upon their death, it would slowly whither away and
turn to ash in her grasping cords.
Unlike other Soul Kind, Chree can only make her tools, her “spirits,”
from things that she digs up from the ground or cuts from the trees. She loves the spirits that she makes, but sadly, they can't love her back.
Maybe some people would think that living like a Soul Kind--- and
not like a human--- would be scary. But
to Chree and those who know her, the great tragedy of Chree's life is that she is not enough
like Soul Kind, and too much like you and like me.
Monday, February 17, 2014
Time to Worry Again...
Dear Ellie,
Today wasn't a very good day for you. All of your respiratory gains over the past week have been wiped away. Your heart rate, also, is troublesomely too high. No one seems to have any solid answers as to why either of these things are happening. Time to worry again...
Today wasn't a very good day for you. All of your respiratory gains over the past week have been wiped away. Your heart rate, also, is troublesomely too high. No one seems to have any solid answers as to why either of these things are happening. Time to worry again...
You Make Me Proud, Little Boy
Dear Ellie,
I'm proud to say that the doctors referred to you by the wrong gender, and not just once! Proud, because people think I'm the opposite gender too all the time (until they actually meet me and see my hairy face), so I guess that means you take after me. I am just a tiny bit concerned, though, that some of your doctors would mix up the fundamental, defining attribute of your person-hood... Should I be worried?
I'm proud to say that the doctors referred to you by the wrong gender, and not just once! Proud, because people think I'm the opposite gender too all the time (until they actually meet me and see my hairy face), so I guess that means you take after me. I am just a tiny bit concerned, though, that some of your doctors would mix up the fundamental, defining attribute of your person-hood... Should I be worried?
Your Favorite Stuffed Animal
Dear Ellie,
When I was little, my favorite stuffed animal was a tiny green alligator named Al. I was given a lot of stuffed animals over the years, so I’m not entirely sure why I chose him. He wasn’t very big, so I couldn’t really snuggle with him. He also had spikes on his back which… well, doesn’t that just defeat the purpose of a plush animal to begin with? I still loved him the most, though. It may have had something to do with the fact that his eyes were pointing slightly askew. It seemed to me that those two eyes, slightly askew, were a manufacturing defect which Al, and only Al, had. It made him look as though he were in the middle of rolling his eyes sarcastically. For those two reasons, I kept loving him well into my teenage years.
When I was little, my favorite stuffed animal was a tiny green alligator named Al. I was given a lot of stuffed animals over the years, so I’m not entirely sure why I chose him. He wasn’t very big, so I couldn’t really snuggle with him. He also had spikes on his back which… well, doesn’t that just defeat the purpose of a plush animal to begin with? I still loved him the most, though. It may have had something to do with the fact that his eyes were pointing slightly askew. It seemed to me that those two eyes, slightly askew, were a manufacturing defect which Al, and only Al, had. It made him look as though he were in the middle of rolling his eyes sarcastically. For those two reasons, I kept loving him well into my teenage years.
“Really, Al?” I would ask him after being ridiculed by a classmate earlier that day.
“Do you also think that that was the stupidest thing you’ve ever heard
someone say?” Then I’d look at his face
and his expression would let me know that my opinions were in good company.
I suspect that just about every child has a favorite stuffed
animal, whether they want to admit it or not.
Most are probably animals of the more furry variety. Teddy bears, dogs, cats. But what about yours, Ellie? Well, I’ve been putting some thought to that
and I think the most appropriate stuffed animal for you would be… a
six-foot-long, green, moray eel named “Oliver.”
By the time you read this letter, perhaps this won’t be a
surprise. Maybe you’ve been snuggling
with Oliver the Eel for years now and, as you are heading off to college, a
serpentine, plush tail is dangling out between the zippers of your suitcase.
There is a history behind Oliver the Eel, part of which you’ve
probably heard by now. You’ve probably
heard about how Oliver the Giant, Green Eel was once the pet of your Uncle and
I. How he was an odd eel because he was
friendly and cuddly and liked to be pet.
About how he died young on the same day that your mother and I were
certain that we’d lost you the first time, during a miscarriage scare.
How your mother and I joked that Oliver died protecting you and became
your animal, spirit guardian. Right now
there is a picture of Oliver on your isolette, his head poking out from behind
wires and tubes as though he were checking in on you.
Maybe, as you look back at your childhood, your memories are filled
with not just Oliver the stuffed animal, but Oliver Myths that your parents told you. And Oliver
Sightings, as we explore the ocean with masks, fins, and snorkels. Maybe we’ve told you that Oliver patrols the
pool at night, while you are fast asleep, then disappears into the pool grates
by day to sleep. Maybe he’ll be like
Santa Claus, but rather than delivering presents when you aren’t looking, he’ll
be your animal guardian all through your formative years. Maybe you’ll imagine him poking out his head
from bookshelves or AC vents to check on you the same way that moray eels poke
their heads out of crevices in the ocean.
You’ll know that Oliver the Spirit Eel isn’t actually real, but it will be fun to believe in him, like Santa
Claus. And if Oliver the Spirit Eel is
ever far from your consciousness for too long, you’ll have Oliver the Stuffed
Animal to remind you.
So that’s the part of Oliver’s history that you are familiar with. But there’s another part. Oliver the Eel is just one of many ways I
want to make your childhood quirky. Not
so quirky that you are weird in the eyes of your childhood peers, but just
quirky enough. I remember growing up and seeing so many kids
that struggled to identify themselves. I never felt that way, myself. My life was different enough, distinct
enough, that I never simply blended in with everybody else (and consequently,
didn’t feel as though I had to engage in self-destructive behaviors to prove
anything). I was just quirky enough to
feel sorry for the villains in movies. And
to relish arguments about philosophy. And to adore a spikey stuffed alligator who
rolled his eyes and was one of a kind.
I want you to have that firm perspective of who you are, too. I want you to look at your life, at all
moments, and be able to say, “I am distinct.
I am Eleanor Smith. I know who I
am.” And I hope that you’ll have Oliver
the Eel along with you when you do.
Sunday, February 16, 2014
Always Remember to Forget How Old You Are
Dear Ellie,
At the time of writing this letter, I’m 30 years old. Before I wrote that last sentence, I had to check my driver’s license to be sure. Someday, I hope somebody asks you how old you are and you forget how to answer. Not because you are concealing your age in vanity, but because you simply can’t remember. That way, when someone expects you to act your age, young or old, you won’t know how. It’s tragic how so many people lose years of their lives wishing that their age was different. Children and adolescents wish to be older and those who are now old bitterly miss their youth. But if remembering your age doesn't come easily to you, you won’t be tethered to your age. You won’t ever count the days until you are older or wish that you were younger. All years of your life will be full.
At the time of writing this letter, I’m 30 years old. Before I wrote that last sentence, I had to check my driver’s license to be sure. Someday, I hope somebody asks you how old you are and you forget how to answer. Not because you are concealing your age in vanity, but because you simply can’t remember. That way, when someone expects you to act your age, young or old, you won’t know how. It’s tragic how so many people lose years of their lives wishing that their age was different. Children and adolescents wish to be older and those who are now old bitterly miss their youth. But if remembering your age doesn't come easily to you, you won’t be tethered to your age. You won’t ever count the days until you are older or wish that you were younger. All years of your life will be full.
Saturday, February 15, 2014
You Are Doing "Suspiciously Good"
Dear Ellie,
A doctor checked on you recently. “Your daughter is doing suspiciously good,” she said. I mulled that over for a second and I realize I couldn’t have said it better myself. Suspicious, because one would expect a lot more to be going wrong at the moment. But it hasn’t. There’s still the specter of necrotic intestines or nasty infections, but none of those problem have materialized… yet.
A doctor checked on you recently. “Your daughter is doing suspiciously good,” she said. I mulled that over for a second and I realize I couldn’t have said it better myself. Suspicious, because one would expect a lot more to be going wrong at the moment. But it hasn’t. There’s still the specter of necrotic intestines or nasty infections, but none of those problem have materialized… yet.
For the past two days, you’ve been pretty well behaved. I might be imagining things, but I think you
might be breathing a bit more steadily than before and you might finally be settling
into the idea of being on your back. Not
completely, but a little. You are now a
whopping 1 pound 10 ounces and the doctors are progressively giving you more
and more breast milk, which you've tolerated very well. You seem to be making gains also on the most
important metrics of your progress: oxygen saturation in your blood and
voluntary breathes.
Oxygen saturation is the amount of oxygen dissolved in your
blood. If it dips too low for too long,
your cells are unable to operate and sensitive cells, like the neurons in your
brain, might not develop properly. Or worse,
they might die. Because you have a fiery
little personality, whenever you flail around a lot, it depletes oxygen in your
blood. Your saturation has never dipped
critically low, as far as I can tell.
Never below 60 percent (I’ve seen some babies go as low as 20-30
percent!) Stay too low for too long, and parts of your brain begin to die.
A Girl Named Chree
Dear Ellie,
I've always enjoyed stories with settings and characters that are profoundly different. Stories that, as you read, feel otherworldly. But slowly as you read further and further, as you begin to relate to the characters and their place, it begins to feel normal. Then, once you pull yourself out of this place that now seems normal, you can't help but to look at your OWN world and find it peculiar. As though you were a person from another world, visiting and gawking at all of the peculiar things. I feel that way often, and it's a wonderful thing because even while I am at home, I always feel like a tourist visiting an exotic land. I never feel bored. I want you to feel that way about the world, so I'm going to write you many stories that take you away from yourself. Right now, I'm working on a series for you about a girl that lives on another world: Far Spirit and the Soul Kind. The Girl, named Chree, is different than the others of her kind, and one day she finds kinship and solace with a strange, rigid creature that lives atop a mountain.
This is the very first part of the story. When they are all done and you are young enough to understand them, I might read them to you before bed so that you have wild dreams.
There once was a girl named Chree, who lived on a world without a name. She wasn’t like an Earth girl, though. She was a thing called Soul Kind. A creature made of glimmering cords and cables all wound together in a knot. To you, she would look like a hundred noodles dipped in sparkling glitter. Chree didn’t walk like you do, but she could coil up her body and then bounce across the land like a spring or a Slinky. She didn’t talk like you either, but she could speak through beautiful songs made by plucking and strumming at her own body as though it were a violin. She didn’t have two big eyes like you or I, but a hundred tiny ones dangling off of little hairs. If you were to ever meet her, face to cables, she would be polite in the way that Soul Kind know how, but she would think YOU looked VERY strange.
I've always enjoyed stories with settings and characters that are profoundly different. Stories that, as you read, feel otherworldly. But slowly as you read further and further, as you begin to relate to the characters and their place, it begins to feel normal. Then, once you pull yourself out of this place that now seems normal, you can't help but to look at your OWN world and find it peculiar. As though you were a person from another world, visiting and gawking at all of the peculiar things. I feel that way often, and it's a wonderful thing because even while I am at home, I always feel like a tourist visiting an exotic land. I never feel bored. I want you to feel that way about the world, so I'm going to write you many stories that take you away from yourself. Right now, I'm working on a series for you about a girl that lives on another world: Far Spirit and the Soul Kind. The Girl, named Chree, is different than the others of her kind, and one day she finds kinship and solace with a strange, rigid creature that lives atop a mountain.
This is the very first part of the story. When they are all done and you are young enough to understand them, I might read them to you before bed so that you have wild dreams.
There once was a girl named Chree, who lived on a world without a name. She wasn’t like an Earth girl, though. She was a thing called Soul Kind. A creature made of glimmering cords and cables all wound together in a knot. To you, she would look like a hundred noodles dipped in sparkling glitter. Chree didn’t walk like you do, but she could coil up her body and then bounce across the land like a spring or a Slinky. She didn’t talk like you either, but she could speak through beautiful songs made by plucking and strumming at her own body as though it were a violin. She didn’t have two big eyes like you or I, but a hundred tiny ones dangling off of little hairs. If you were to ever meet her, face to cables, she would be polite in the way that Soul Kind know how, but she would think YOU looked VERY strange.
Chree is a lot like you in many ways, but also very
different. You see, Chree once had a
family, just like you. It was filled
with sisters and aunts, mothers and grandmothers, but since there are no such
thing as a boy Soul Kind, Chree had no brothers or uncles, fathers or grandfathers. Chree also lived inside of a thing like we do
too, but while you and I live in a house, Chree lived inside of a giant barnacle. The Soul Kind call these barnacles Thorn Mothers, and they love their Thorn Mothers very dearly. When the terrible Gorger comes to devour the world every evening, the Soul Kind spring
toward their Thorn Mothers, climb into their mouths, slide down their gullets,
and take refuge in their stomachs. While danger still lurks outside, the Thorn Mothers cuddle all of their Soul Kind
close to comfort them.
If you told Chree
that you lived inside a cold, lifeless house, she would think that this was very
sad. "Do you mean that the place in which you live can't say 'I love you?'" she would strum, and then she would feel very sorry for you. If Soul Kind had hearts, hers would be very big. She might invite you over to Mohalee,
her Thorn Mother, so that you could
scurry along the folds of her shimmering brain or bound around inside of her
stomach. That is, she might invite you…
if she still had a Thorn Mother, or a family of her own, anymore.
Rules For Your Parents, so That They Don't Misbehave
Dear Ellie,
Parenting has a lot of rules involved. Parents tell children how they must behave in
society, what they should aspire to, what is right and what is wrong, and they
typically aren’t afraid to employ punitive measures to correct deviations from
these rules. All of these rules make a lot of
sense, because when anything is constructed it is usually done so with some
degree of instructions. Constructing a
person--- their body and mind--- is
no different. However, in the
relationship between parent and child, there is a distinct direction for those
rules: from parent to child. When a child does not behave the way that we
believe they should, we have rules to correct them.
I wonder whether it should necessarily be so one sided. Yes, we adults have accumulated more
knowledge which we must impart, but we are by no means beyond misbehavior.
I’ve always sympathized more with children because I notice
that parents have a tendency to misbehave just as much, if not more, than
children. It’s easy to overlook because
a child never has the authority to critique their parent or criticize them for
their misdeeds (or, perhaps, they aren’t old enough to recognize their parents’
faults).
Very often I see parents carelessly using harsh tones or austere
words where they aren’t warranted. I see
them setting bad examples. I see them doing
things that they would never recommend to their children, then conceal those
deeds as best as they can. And of
course, adults are so frequently dishonest.
Yes, children are dishonest, but adult dishonesty is far more pervasive
and far more opaque. One would expect
that a parent’s insistence on maintaining certain standards of behavior for
their children would make them look inward to correct their own faults, but
that is rarely the case.
I don’t want our family to be like that, Ellie. Our family shouldn’t be about the creation of
just one person. It should be about the creation of three people. Your mother, myself, and you. Yes, there will be many rules which you will
be expected to follow and yeah, sometimes we’ll put our foot down despite all
of your best arguments and protests. But
there will be many rules which we, your parents, will be expected to follow as
well. Trying to make you a better person
will remind us that we should be making ourselves
better people. Your childhood will be filled with growth and discovery, and I want to grow and discover right along with you.
As of now, we will start making rules for ourselves, the parents, and as
you grow older, you can help to make them with us. For now, we’ll start with some of the rules
that your mother and I had once made for each other:
---It’s never okay to raise our voices in anger just because we’ve
been frustrated by a long day at work.
---It’s never okay to use a harsh tone just because we feel like
it, especially if a kind one will do better.
---The best feelings of the day should be saved for family. The people that you love the most should be
treated the best, not treated exclusively as a dumping ground for the day’s
irritations and anxieties.
---If we hold you to a standard, we will hold ourselves to that
standard as well.
---Our home is not a place to escape from. It is a place to
escape to, and we must always try
hard to make it that way.
---If your parents ever misbehave and break these rules, you have
the authority to correct us.
As I’ve written these letters, I’ve always imagined that you’d
read them later in life. As a rite of
passage, in your late teens or early adulthood.
These rules for your parents, though, will be a thing we will hold
ourselves to from the very beginning. I
suppose in a way this will be a letter you’ll be writing with us for a very
long time.
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