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A Love Song for KatyBeth


It wasn’t so long ago, the time in my life before this whole adventure started. It was only six years for me; a small fraction of the years that I’ve lived, yet those years span the entirety of your life. You’ve never known life without me in it.

Yet I can remember most of my life without you, although that time becomes increasingly vague in my memory. You were the epiphany, the understanding I’d long sought, but never fully appreciated the wonder of until the day you arrived. It’s hard to explain how it feels. I suppose every father struggles with the same thing. How do you tell your children just how much they mean to you?

I decided to write a letter.

Not just any letter, mind you. It was my first letter to you, and I wrote it in the hours before you were born. In it were my hopes for your future, and my fears, and my wonder at the miracle your mother and I had wrought. It held everything I wished for you, and everything I hoped to be as your father, the man privileged to guide you along your path in life.

I wanted to get it all on paper right then, when it was pure and unsullied by the inevitable mistakes of parenthood. I had this silly, romantic notion of giving it to you when you were older, on your eighteenth birthday perhaps, or some other day when you were utterly convinced that your parents were hopelessly out of touch, or intent on ruining your life.

I’d hand you the letter, and you’d see for yourself how I meant it to be. You’d understand how it was for me when this adventure started. You’d realize that, despite the mistakes I had made, my intentions were good. You’d have some inkling of how profoundly a parent can love a child.

And I did it, too. I nailed it. Words never came so easily. It was funny, and it was poignant, and it was moving. It was the best thing I’ve ever written, even if some of the words were a bit smudged. I had something in my eyes as I was writing it, you see.

And now I can’t find the damned thing.

File cabinets, lock boxes, desk drawers…I’ve turned them all inside out. Between three moves and a divorce, there’s no telling where it may be. Nestled between the title to my ’84 Ford Ranger and my original birth certificate, no doubt, never to be found again.

So I suppose what I should do is start over, because ink may fade with time and paper may grow brittle with passing years, but as anyone who has ever posted something embarrassing about themselves on their MySpace page will tell you, the Google cache is forever.

**********

I suppose, when a child is finally old enough to ask, that every parent tells their child that they were planned. Perhaps a few choose total honesty and gently tell their children that their conception was an accident, but a happy one nonetheless. Or perhaps they do like my mother did, and tell me that she was reasonably sure I was the fruit of the collective passions of the 1968 NLU Indians football team.

Or maybe it was the basketball team. The booze made it hard to remember, but she thought I looked a lot like the quarterback. Or maybe it was the starting point guard. Like she said, the booze made it hard to remember.

So my advice to you is, if ever you feel compelled to ask, hope that you’re still young and impressionable enough that I either give you the gentle lie, or the honest answer. If you wait until you’re a teenager, I can’t guarantee I won’t tell you something outrageous, just to see the look on your face. I am my mother’s son, after all.

But if you’d really like to know, you were conceived in a moment of fevered passion in the neighbor’s laundry room. There was a pool party going on, and we were washing beach towels…well, let’s just say that the music was loud, the booze was flowing, the washing machine was on spin cycle…

…and your Mom was all sweaty and glistening. She bent over to clean the lint trap, and all of a sudden it was bow chicka wow wow! At least, I’m pretty sure it was your Mom. The booze makes it hard to remember clearly.

Now I’ll pause the letter for a moment as you vomit at the thought of your parents ever actually – gasp! – having sex. Take your time, I know it’s a revolting thought. The first time I ever contemplated the thought of my folks doing that sort of thing, I was skeeved out for a month.

Regardless of how it happened, rest assured that nothing about your coming was accidental. Not on my part, or your Mom’s.

Or for that matter, even God’s.

**********


One pound, fourteen ounces, and nineteen inches.

That’s how small you were when the doctor pulled you from the womb. That’s roughly 850 grams, considerably less heft than that liter bottle of water that you see me drinking from so often. By comparison, the average adult fox squirrel is considerably bigger, and a big one will weigh twice that. My friend Bodie made that very observation when he first laid eyes on you, lying there in your NICU isolette.

“Hell son, she ain’t no bigger’n a skint squirrel” he said wonderingly. “You say the word, and I’ll smuggle her outta here under my hat. I got a shoebox in the house y’all can use as a crib.”

It wasn’t supposed to be that way, you know. You were to be a Valentine’s baby, the perfect gift your mother and I could envision for each other, and yet you came before Thanksgiving. It was a very scary time.

Consider that big babies run in your family. All your aunts and uncles weighed more than ten pounds, with a couple of thirteen-plus pounders thrown in there as well. Your Aunt Troll and I were twins, and we weighed eight pounds apiece. Your Grandpa buried two of his own twins before your mother was born, and each of them weighed more than you. Thirty-five years ago, babies your size simply didn’t survive.

So I wasn’t the only one paralyzed by fear that night. We all were, your Grandpa the worst. I was outwardly calm, because it is in my nature to be so, especially when everyone else around me isn’t. I was ready to be a father, but I wasn’t ready to bury you before I even got the chance to hold you, or to feel the rise and fall of your chest as I held you to mine, or to feel your tiny hand clasp my finger. Not before I fed you your first bottle, or changed your first diaper, or heck, even gave you away at your wedding.

I just wasn’t ready for that.

And so, the night of your birth found me on my knees in the hospital chapel, praying like I’ve never prayed before or since. I wept, and I prayed, and I wept some more, and I bargained with God, offering anything I could, including my own life, if you could be born healthy and whole.

And when you the doctor drew you forth, still blue as a Smurf and impossibly tiny, you started your life by defying expectations.

At 28 weeks, you weren’t supposed to be able to cry. Yet you did.

You weren’t supposed to breathe on your own. Yet you did.

You weren’t supposed to be able to suckle on your own. Yet a week later, the physical therapist came to our room, shaking her head in consternation, and suggested that we buy some preemie pacifiers for you, because apparently nobody had told you that reflex wasn’t supposed to be developed yet.

In my heart, I’ll always believe that my prayers had something to do with that. Not because I have a special conduit to God, or even because I know Him all that well, but because I believe he sees into the heart of the person praying, no matter how clumsy or eloquent the words.

I tell you this not to convince you of the power of prayer, or even of the existence of God. I’d hope that we’d raise you knowing God’s word, as I promised Him that night. Whether you worship as a Baptist like your mother, or an Episcopalian like me, or any denomination you choose, doesn’t matter to me. If you choose not to believe at all, I’ll be disappointed, but I will love you none the less.

I tell you this simply to make you understand that, even if you don’t believe that prayer works, there are things in this life worth praying for. If you pray, do so for the things that matter.

Those things aren’t the promotion you’re hoping for at work, or winning lottery numbers, or a good grade on that math test, or for your favorite team to win the Super Bowl. Pray instead for the health and well-being of others. Pray for your brothers and sisters, your friends and neighbors, even your enemies. Pray for the safety of a soldier. Pray to ease the suffering of the sick. Pray to assuage the grief of someone who has lost a loved one. Pray that others may find common ground between them, and cease their fighting.

Pray, as I did, for the life of your child.

God sees the love behind such prayers, no matter what words they’re couched in. And, I suspect, even if the prayers aren’t directly addressed to Him.

**********

I watched you for the first month through a thin sheet of Plexiglas, at most able to touch only your tiny hand or foot. Babies born at your age still have raw, undeveloped nervous systems. The slightest stimulus can cause them harm, so they put you in the Mushroom Room with the micro-preemies. They keep it dark, warm and quiet in there, the only noise the hiss of oxygen or the hum of machinery. NICUs are not as quiet as you might think, but in the Mushroom Room, everyone speaks in hushed whispers.

From the beginning, your Mom and I flouted the NICU visiting hours. We knew your nurses, knew your doctors, and most importantly we knew the security code to get through the doors. So we’d show up whenever we could, and we’d spend hours next to your isolette, whispering together, marveling at the wonder of you. Occasionally the nurses would run us off for a few hours, but I think they knew they wouldn’t be able to keep us away for long. Plus, we were low maintenance parents. The second time someone replaced your orogastric tube, it was me doing it. If a diaper needed changing, or a monitor needed troubleshooting, they trusted us to do it. If the baby in the next isolette had an apneic episode, I stimulated him until he started breathing again.

Actually, the nurses kind of frowned on that. “Only on your own baby!” they’d admonish. Sometimes I have a hard time turning the paramedic part of me off.

After a few weeks, we were allowed to hold you once a day. They had a program called Kangaroo Care, where preemie babies are held against their mother’s bare chest, skin to skin, to promote bonding. Infants need nurturing and touch, and the sooner the better. The quicker we could hold you, they told us, the better you’d do. As long as you could maintain your body temperature, they’d let your Mom hold you against her chest for an hour each day.

They didn’t count on me.

I don’t know if most fathers didn’t normally assert themselves over such things, but I think it surprised them when I insisted that I be allowed to participate. Damned if your Mom was going to get all the snuggles, not after I kept vigil over you through a Plexiglas barrier for nearly a month. I was not going to be denied the chance to hold my daughter.

And so I snapped photos and beamed proudly all through the first visit, and then I went home and shaved off all my chest hair without telling anyone. I didn’t know whether the hair might irritate your skin, or be a source of infection, or if it was even necessary. I wasn’t taking any chances.

And on the next visit, I hip-checked your Mom aside and firmly told the nurse, “My turn.” She flashed me a surprised look, burst out in a guffaw when she saw my freshly shaven pecs, and handed you over. Somewhere in a display case in that NICU, amid all the Polaroids of proud mothers holding their babies for the very first time, there’s one of a burly guy with a goatee holding this impossibly small little thing against his chest, and he’s crying like a frickin’ baby.

Little did I know that would start a tradition. For five years, rarely a night passed when you didn’t start it with your head on my chest and your hands toying with my chest hair in your sleep. You may have ended the night in your crib, but it always started with your head on my chest.

Sometimes I think I’ll always feel the ghost of it there, even after you’re grown and gone.

There were many times during those sixty-one interminable days you spent in the NICU, when I’d let myself in after a particularly rough shift on the ambulance, pick you up and hold you to my chest until that baby scent banished the horrors of the day. More than once I was woken up by the gentle but insistent voice of your nurse.

“It’s late,” she’d whisper sympathetically. “Go home and get some sleep, and come back in a few hours.”

I doubt the nurses understood how much I needed that contact with you, how much it calmed and centered me. Or perhaps they did, and that was they turned a blind eye to me ignoring the posted visiting hours.

You see, it wasn’t long after you were born that we got the first bad news. Your brain had hemorrhaged while you were in your Mom’s womb, perhaps two weeks before you were born. It was a bad bleed; a Grade IV intraventricular hemorrhage with right periventricular leukomalacia.

Look them up if you want to. The internet is full of scholarly articles on the condition. You can read the percentages of children with the condition who are afflicted with blindness, seizures and profound mental retardation. Scan through the articles that say cerebral palsy is a virtual certainty. Heck, you might even stumble across the one that wonders whether it might be ethical simply to let babies like you die, given the dismal prognosis.

And you can ask yourself if any of those dry and sterile statistics encompass you.

You see, none of the medical literature is capable of quantifying hope, KatyBeth. Whenever your path in life takes its darkest turns and despair gnaws at your soul, remember that you can always beat it back with hope. You’ve been able to from the first moment you drew breath.

The fact that you’ll read this letter someday is proof of that.

**********

Parents of newborns quickly develop a routine, which can best be described as totally subject to the whims of that demanding little being you created.

Every parent can commiserate with the tales of colic and late-night feedings and endless diaper changes. And until you’ve raised a child, a cry is a cry is a cry. But every mother will appreciate the differences between poopy cries, hungry cries, sick cries, and the omnipresent “I’m pissed because you people are not worshipping me in a manner befitting my regal infant stature” cries. It’s just something parents pick up.

We’d been prepped by books, and the advice of well-meaning friends, and our own experiences with our nieces and nephews. We were medical professionals, well-versed in how to manage a fever, how to coax a child into taking medicine, and when to quit screwing around and bring you to the doctor instead of treating your symptoms ourselves. We had months to plan, coordinate schedules, prep the house, stock up in baby formula and diapers , and set up your nursery. We were prepared.

Yeah, right.

NICU nurses like to play a cruel trick on new parents by carefully arranging their preemie patients in their isolettes in a fetal position; face turned to the side, arms and legs carefully tucked beneath. The longer the stay in the NICU, the more the infant becomes accustomed to the position. You spent two months there, sleeping that way.

Problem is, every known pediatric reference in the world trumpets the SIDS-prevention mantra, “Put your baby back to sleep.”

Couple that with the fact that they saw fit to change your formula the day you were discharged from the hospital, and the two combine to form the Perfect Storm of Colic. For a solid month, until a high-calorie version of your original formula became available in grocery stores, the only way you could sleep, at all, was curled up in a fetal position on my chest.

We lasted three days before we broke our vow that we’d never let our baby sleep with us.

I won’t even mention all the other parenting “no-nos” we committed. Some of them were willful, because your Mom and I harbor the suspicion that most authors of parenting books are childless asexual psychologists who are totally full of shit anyway, and some of them were inadvertent – like the times we let you roll off the bed. Others still were committed just because we thought it was cute – like encouraging you every time you sang Tequila Makes Her Clothes Fall Off.

Actually I’m not sure that last one was a mistake. A cute blonde girl that can sing country music can pretty much write her own ticket.

But none of that prior experience and parenting advice is of much use when your child has cerebral palsy. All of the things other kids pick up naturally, you learned through endless, painstaking repetition. Those milestones other kids reach effortlessly at the proper times outlined in those parenting books, you reached only through supreme concentration and an iron will, sometimes months or years later than your peers.

But reach them you did.

And so we learned a new frame of reference, and new ways of doing things. We learned to celebrate smaller milestones, and keep faith that you’d reach the bigger ones soon enough. And for the most part, that faith was rewarded.

Still, the learning curve was a bit steep.

You can flash a huge smile and coo, “Open up the hangar and let the plane fly in!” when your little tyke doesn’t want to eat her strained carrots, but neither the plane nor the technique really fly when your child physically recoils at the texture of her food.

A little Karo syrup in the formula works wonders when most babies are constipated, but when your child’s digestive system is impaired because of the brain damage incurred before she was even born…yeah, not so much.

Distinguishing between the poopy cry and the hurt cry is usually pretty easy, except when pooping happens to be excruciatingly painful for your child. But it doesn’t really matter. Your child is crying, and you do whatever it takes to comfort her.

Mealtimes are supposed to be happy times for families, but what do you do when both father and daughter dread every single feeding? It wasn’t so much the food as what came after.

You’ve asked me before why you can’t run fast, or do jumping jacks or pushups in gym like your friends, and your Mom and I have always taken the coward’s way out and told you that even though God gave you a left arm and leg that didn’t work so well, He blessed you instead with brains and an impish sense of humor. Cerebral palsy robbed you of the full use of your limbs, we’d say, but you have other gifts.

What you don’t remember is what it took to get you even as far as you have come. Every day, I say a thankful prayer that you don’t remember, and hate me as a result.

Your cerebral palsy manifested itself as spastic diplegia, leaving your legs and hips impossibly stiff and immobile. Had you continued as they were, you’d have found it impossible to crawl, or walk, or even roll over. Left long enough, they’d have frozen that way, leaving you confined to a wheelchair in a twisted, fetal bundle.

The only remedy, they told us, was to stretch your limbs, try to restore whatever range of motion we could. We’d have to stretch you every day, the more the better. And so, every day, after every feeding, I’d lay you on the bed, and I’d stretch your legs and arms. Hamstrings, heel cords, hip flexors, biceps and triceps, wrists and ankles…

…and every minute of it threatened to rend my soul in tatters.

I’d bend your unyielding limbs in all the ways they were supposed to move but wouldn’t, and in many ways that seemed unnatural, and you’d scream in pain throughout the entire ritual. You’d cry out, unable to fight back or even pull away, and I’d press on, praying in vain for some way to immunize my ears against the sound of your cries. Every session ended the same way – both of us sobbing brokenly, with you clutched against my chest, me begging for your forgiveness.

Every day. Five or six times a day. Ten minutes at a time.

I reached a point where I sought reasons to be elsewhere at feeding time. Throughout our marriage, and those two months you spent in the NICU, I was always the one to be stoic and strong for your Mom. I think nature equips men to play that role.

But nature does not equip us to inflict pain on our children, no matter the reason, without leaving a scar somewhere on our psyche. I know it scarred mine. Part of the reason I’m such a pushover where you’re concerned is because I’ve never quite convinced myself that you could forgive me for inflicting so much pain. Your Mom turned out to be the stronger of us in that regard. At least she can still tell you no.

**********

Not long after we took you home, our liaison with Families Helping Families gave us an essay called Welcome to Holland, written by a woman named Emily Perl Kingsley about what it’s like to raise a child with special healthcare needs. No doubt your Mom and I will have told you about the essay, perhaps even read it to you, in an effort to help you understand how it affected us, and by extension, you.

It’s a story about expectations, and loss, and dealing with disappointment. If you’re a cynical person, I suppose you could boil it all down to a trite little saying like, “When life hands you lemons, make lemonade.”

But I’d hope that we haven’t raised you to be cynical, and your cerebral palsy certainly isn’t something so trivial as a lemon. But if you read it, I mean really read it, you’ll realize it’s not so much about making the best of a bad situation as it is about refusing to let disappointment blind you to the gifts you already have. My greatest fear is that, somewhere along your path in life, you’ll make that mistake.

What a tragic mistake that would be, that you fail to recognize your own gifts, or those of the angels who helped you discover them.

You met the first of them when you were still in the NICU. Nurses fought to be the one to take care of you. Everyone wanted to look after the amazing little girl who had such a devastating brain injury, yet showed so little sign of it. When your neurologist saw you for the first time, he walked back to the nurse’s station and said, “Excuse me, I’m looking for the Grayson baby. Have they moved her?”

“That’s her,” the nurse chuckled. “Isolette #4. If you wait a few more minutes, you’ll meet her parents. They went down to the cafeteria for lunch.”

“There has to be some mistake,” he explained. “The baby I’m supposed to see has a Grade IV bleed.”

That’s her,” That’s the nurse insisted. “And if you think she’s impressive now, wait’ll you see her CT scans.”

“I’ve seen her CT scans,” he said wonderingly. “I just don’t believe what I’m seeing now.”

One of your nurses told me that story after Dr. Pena left, and I was reminded of it barely a week later, after he gently, but bluntly, told us exactly what obstacles you faced. I was driving home, wondering how I’d ever be up to the task of raising you, when Natalie Merchant’s Wonder came over the radio:

Doctors have come
from distant cities,
just to see me.
Stand over my bed,
disbelieving what they’re seeing .

They say I must be one of the wonders
of God’s own creation,
and as far as they see they can offer
no explanation.

I’m not sure if he’s even heard the song, but Aristoteles Pena-Miches has called you one of God’s wonders more than once since then, and when you look into his eyes you can tell he believes it. It’s not just something he says to reassure frightened parents. He truly thinks you’re a miracle. So does every nurse, therapist, doctor or teacher you’ve ever had.

Who am I to disagree with them?

**********

One of your gifts has always been your strength of will. Most people see your blue eyes and hear that lilting voice of yours, and that’s all they see – a cute little girl. Others might also notice your limp or the way you hold your left arm tucked close to your side, and they might get the perception that you are frail.

What they don’t see is how you hate failing at something. They’ve never heard you scream in frustration as you struggled, again and again, to master a new skill. They’ve never seen you keep at something until long after your therapists were willing to let you quit.

And every good therapist has a streak of sadist in them. They’re not doing their jobs unless they’ve pushed their patients beyond where they thought themselves capable. With you, they never reached that point. Not once. You may have failed to reach a goal, or ended a session in defeat, but not once did you quit.

And when you refuse to quit, you’re never defeated. Try to remember that.

Sometimes, that got in your way. Your therapists were so good at motivating you, and your desire to please was almost as strong as your willpower, that when you failed, you’d collapse in a screaming fit. You’d arch your back, clench your fists, and kick your legs…and all that muscle spasticity would come right back, threatening to erase what little progress you had made.

So, with the advice of your speech therapist, we taught you coping mechanisms. Simple parenting skills, really. When you cried or screamed inarticulately, we encouraged you to verbalize your frustration instead. Instead of crying, we taught you to say, “I’m mad,” or “I’m sad.”

Little did I know we were creating a master manipulator. It wasn’t long before you mastered the puppy dog look, and the pouty lower lip, and that quavering, on-the-edge-of-crying, heartbroken delivery. Powerful tools, those.

Just remember they don’t work on me. I know what a badass you can be.

So seriously, stop with the puppy dog look.

I mean it. You’re not fooling me. That lower lip thing ain’t working either. You have homework to do.

Okay, okay, okay… you can have an ice cream sandwich. But not until you’ve finished your homework and cleaned your room. What do you think I am, a sucker?

**********

I know that you fear many things. Fear itself is not necessarily a bad thing. It can teach you caution. It can motivate you. It can make you realize what is most important to you. People who have nothing to fear also have nothing to live for.

But fear can be a handicap when we let it limit us, KatyBeth. And your mother and I promised ourselves, and you, that the only handicaps you’d have would be the ones that absolutely cannot be overcome.

And fear can be overcome.

You master your fear in the same way you have mastered everything else – by facing it, and refusing to quit until you’ve won. The willpower that helped you to crawl, and walk, and talk, and everything else you do that the odds said you couldn’t, is the same willpower that will help you master fear. Trust me when I say this, the things you fear will never hurt you as much as the limitations you accept for yourself by not trying.

There are people, even those who love you, who would encourage you to accept those limitations, because they also fear. They fear you being hurt, or experiencing disappointment. They mean well, and they would protect you if they could.

Don’t listen to them. Don’t let their fears become yours.

Fear tempered with common sense and discipline equals caution, and caution is a good thing. We want you to be cautious. But unreasoning fear will cause you more harm than snakes, or loud noises, or big dogs, or rambunctious kids ever can.

In your life, you’re going to fall down. You’re going to be hit. You’re going to get bitten. Mean kids will say cruel things. Boyfriends will break your heart.

But those things can never really hurt you unless you allow fear to convince you not to get back up, or defend yourself, or shun every dog you encounter, or refuse to dance because some little punk made fun of your funky moves. And when it comes to heartbreaking boyfriends, you leave them to me. I’ve got guns, acreage and a backhoe. After the first one disappears mysteriously, every suitor after that will treat you like a queen.

There was a time, when you were just past three years old, that I took you to a local seafood joint after a long day on the river doing things on the jet ski that no doubt would have terrified your mother and your grandparents. We were tired, and hungry, and just a little sunburned, and we tied my jet ski to the dock and found ourselves a seat on the patio, and ordered.

And shortly after our food arrived, the deejay cued up the karaoke machine and started taking requests. That absolutely blew your mind. I mean, here were all your favorite things – people, and music, and a microphone! And they’d let anybody just pick up the microphone and sing! And everybody listened and clapped!

It wasn’t long before you were bugging me to let you sing. So I led you up front, hoisted you onto the stage, handed you the microphone, and whispered to the deejay to cue up Drift Away. And when the music started playing, you looked out at the audience…

and froze.

I watched you stand there, terrified, until I realized that no sound was going to escape your lips. So I walked back up to the stage, sat down and put you in my lap, and motioned for the deejay to start the song again. And then I swallowed my fear, and we sang the song as a duet.

Your voice was faint at first, barely audible, but by the time we reached the first chorus, you were belting it out. And by the time the song ended, you were singing your little three-year-old ass off as if you were channeling Dobie Gray himself. And when it was over, people clapped.

Clapped, hell, they gave you a standing ovation. They whistled and cheered, and asked for an encore. And I just hoisted you onto my shoulders and basked in your glory as we made our way back to our table. When I asked for the check, the waitress told me one of your new fans had paid for our meal. You were a rock star.

Remember that. Never will your star shine so bright as when you are being bold and fearless.

**********

I’m not always going to be the person in your life who has all the answers. Heck, I’m not even that now – Mawmaw is your Oracle these days. And I’m sure there are going to be times in the future when you’re convinced your Mom and I are trying to ruin your life. We’ll harass you over your schoolwork, your choice of friends and boyfriends, your taste in music, your clothes, and probably a million other things.
Thus is the nature of the relationship between parents and children, I suppose, when one party sets the boundaries while the other seeks to test them. I’m your father, not your friend.

And if it seems that I push you sometimes, that I make unreasonable demands, keep in mind the promise I made. Your destiny is your own. I can’t chart that path for you. But my job is to make sure you don’t stop somewhere short of that destiny because you settled for less than you can be.

And all the while I’m pushing you, keep in mind that I am your biggest cheerleader and your #1 fan. I can’t wait to see where your life takes you. I have a feeling it’s going to be an epic adventure.

I love you, Little Girl.

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