Dear Friend Who’s Wondering Whether to Have Kids

You have every reason to pause. The movies show frazzle-haired, postpartum women moody on hormones and sobbing with sore nipples. They show dads elbow-deep in poop, wrestling with diaper tape. Also everyone, it seems, is stepping on the porcupine-like stabbings of small toys. (Always, always stepping on toys.) And I’m not even here to tell you that the movies are wrong. I’m pretty sure my husband’s elbows have never known the consistency of poop (unless he’s got a story from high school that I don’t know about), and I for one escaped the postpartum emotional roller coaster (or, at the very least, my normal state of being is already so moody that postpartum made little difference). But what those cartoonish movie-depictions are trying to get at is a profound sense of upheaval. Of life as you know it, turned upside down.

And that’s because when you have a kid, the center spoke around which your whole life once turned—your self—is now replaced by something else—your child.

And I’m not going to lie. Despite the romantic picture above, this can be painful. Painful in the way that sucked-raw nipples and gashed feet might only metaphorically capture.

So yes, this could be a reason not to have kids. For decades, you’ve been the center of your world. And not in a bad way. In a perfectly reasonable and good way. You’ve woken up in the morning and thought, “Gee, after work, maybe I’ll hit the gym. Or the grocery store. And this weekend, maybe I’ll visit an ashram and try to realize enlightenment. Or watch a reality TV marathon.” Whatever. Sure you had limits. You had bills to pay and maybe family dramas to handle. Grandparents died, maybe parents fell ill. You struggled in college, or graduate school, or you never felt like you truly belonged. I’m not saying your life has been a cake-walk, or that you never had to think about others.

I’m saying that, when you woke, your first thought was probably about your own needs. Whether you had to pee. How many times you could hit the snooze before getting up for work. Stuff like that. And beyond that, you might have even thought about your wants. I certainly did.

When my daughter was born, I was woken up every two hours by the nurse on duty, and told to try to feed my baby. She was a writhing 4-pounder, with a mouth the size of a quarter, and I was to offer her my breast, which she screamed at like deep inside it she saw the prophecies of an approaching apocalypse. I forced her face to my boob and she wailed. She would not “latch,” as they say.

So the nurse then wheeled a breast pump to the bedside, a machine with clear tubes that attached to clear funnels that I then held to my breasts for twenty minutes, as they sucked and sucked like vicious, very unromantic, very bad and very plastic lovers. It was midnight, or it was 2:30 am, or it was 5 am, and I had just squeezed a person out of my vagina, and before that had endured … oh hell, I won’t be the kind of woman who goes into the exact pitch and pain of labor, because this is not about the pain of labor, which is painful yes, but not the point. So there I sat, having just endured labor, having not slept more than two hours straight, with my nipples being sucked through the funnels of the breast pump, watching a whole lotta nothing and then a few specks of yellow fluid drip pathetically into the bottles, while a nurse snuggled my newborn in a hospital chair and fed her formula from a bottle.

What did I need? I needed sleep. I needed, probably, another ice pack. I could have used a glass of water. I needed sleep I needed sleep I needed sleep. Instead, I was tied to a machine which attempted to suck from me the nutrients that someone else needed.

My point: the center of my universe was shifting. I didn’t even know her well. My love for my baby was a fuzzy thing I sensed like one of those uber-soft polyester blankets had been cast around the two of us. But my love hadn’t yet manifested in the physical things, like it has now—the sweet smell of her all clean and newly diapered, the honey brown swirl of her cowlick, the dazzled smile when I dance to MIA. These things did not exist. What existed was a weight and a length and a head circumference (all of which, if you read previous blog posts, you know was dire and concerning for doctors), and a name and a certain kitten-like cry, demanding. She needed, she needed, she needed. I barely knew her, and she demanded all of me. And more. More than I knew I had.

It was brutal. I do not mean to say that I lost it, that I had a meltdown or wondered why I had agreed to this. I was too tired and too delirious to have lost it, to have formed much of any thought at all. I was riding a wave of her need.

Within days, I noticed that, by necessity, my first thought in the morning was not my own needs—To pee? To snooze? To swig some water? No, it was this baby. Hungry? Gassy? Too hot? Too cold? In need of a tighter swaddle? If she was okay, then I was okay. I could go back to sleep. By necessity, I had to think of her first.

The details of the story have changed, of course. The hospital grade breast pump is a faint memory, and she eventually developed an interest in my boobs enough that she’d pant at the sight of the nursing pillow. Now she doesn’t even nurse at all. Now her dad can do midnight feedings. It is awesome. It is so supremely awesome.

But in many ways, the story is the same. Her needs often trump mine. If my life is a spinning wheel, she competes with me for that center. Perhaps we take turns. But those first days represented a new way of thinking, a new way of interacting with the world, one that has and will continue to thread through my life. Here’s another example: six weeks after, I went for my first jog. I saw a “wisher,” those white fluffy things that float through the air in July. I grabbed it, and instinctively, and for the first time in my life, I made a wish for my daughter. Not for me.

I don’t know if this sounds enticing to you, or just terribly depressing. Bear with me. I haven’t actually gotten to my point just yet. My point is this: There are a hundred reasons, really lovely feel-good reasons, to have a kid. They are cute. Especially when they are sleeping. They give humorous wet kisses before they learn to pucker. They might find you nearly as funny as you find Tina Fey, and you don’t even have to do very much to make them laugh. Just lift them into an airplane. Or hang them upside down by their feet. Or fart on their belly. No, don’t do that. Also, their hands and feet are soft and miniature. They become the adoration of every stranger and acquaintance you see, thus alleviating you from that painful “What should we all talk about” situation. (Yes, I highly recommend babies for the socially introverted.)

But here’s, I think, a very big reason to have a kid, one that might run counter-intuitive to all your weighing and family-planning and pro-and-con-listing. They will rock your world. Turn it upside-down. Turn you upside-down, shaking your totally understandable self-focused thinking out like change from your pockets. They will even boil you down to the primitive, leaving you believing that a good day is simply a day showered before noon. In other words, the difficulty of a child is, at least as far as this fairly amateur mother can tell, the very reason to have a child.

It hurts. This change. But I think that, if you feel the calling, it is good.

Now, dear friend, perhaps you’re leaning away from kids. You’re thinking, My God, I just don’t think this parenting road is for me. If so, I fully support you on that! I do not wish this kind of life-rupture on the seriously kid-resistant. I think it’s imperative that you discern whether or not you “have the calling.” Parenting is not for everyone, and life will have plenty of ways of turning you upside down, of shaking out the coins in your pocket. Also, if you feel life isn’t doing a good enough job of this, there are monasteries you can enter. Really rigorous Zen monasteries, where you are made to live without heat or sex, and with very little sleep. My husband entered one. He can give you tips.

But I think losing the very thing that we soon-to-be parents are often freaked out to lose—our independence, our island-like self-reliance—is actually one of the rich gifts of parenthood. It is, in some ways, a relief to make a wish for another person, and to feel that her wish is more important than mine. Had I read that sentence pre-motherhood, the feminist in me would have gasped, but I’m not talking about a subordinate, “I’m just a mom–my needs and wants aren’t important” kind of thinking. I’m talking about a deep compassion that breaks a heart open, sets it throbbing something fierce for another, in the best and achiest of ways.  I’m talking about, not an eye on one’s past—finally, not an eye on one’s past, on one’s own childhood as the reference point, the narrative touchstone, the central story that guides one. But instead, an eye on the horizon, on the future, on someone else’s childhood and how you will shape that person’s life and, consequently, those whom that person touches. Parenting feels like a massive, wild, difficult and delightful upgrade. For me, it has felt like “Life, 2.0.”  If you’re open to that, I highly recommend it.

Advertisements

My Daughter’s Heart

Today I curled around my tiny daughter, who lay on the hospital bed, and I watched what she watched: a five-foot tall glowing cylinder of water. Inside the cylinder was a thinner cylinder of bubbles rushing upward, and we watched together as the whole thing glowed pink then blue then green and as the bubbles rushed to the surface, ushering with them little plastic fish, which then floated down to the bottom again.

The gadgets in the cardiology unit of Cincinnati Children’s are impressive.

Unlike human genetics, which is a windowless small wing covered with garish and discordant murals (Safari on this wall! Pirates on that!), the cardiology unit is peppered with bona fide art. In the waiting room, there’s an entire wall of unique heart sculptures, each set in its own glass case, inlayed into the wall, painted a different way. In the examination rooms, artists’ statements are posted on plaques beside paintings, just like in a gallery. Later, while Fiona was sleeping, I stared at a Mackenzie Thorpe—a little kid pulled a spotted dog on a one-wheeled barrow. On the ground were little flowers in the shapes of hearts. I wondered if every room had a piece of art that nodded to the organ we were all here to talk about.

The heart. We were here to learn the measurements of Fiona’s heart. That was why she lay quietly on the hospital bed, looking at the bubbling light fixture. We were waiting on the sedative, hoping she’d get calm enough that the technician could snap a hundred photos of her tiny little heart.

And she did calm down, though she never fell asleep because she’d spit most of the sedative out. And the technician did flick on the sonogram machine, showing its cone of static on a black screen, as when someone first photographed Fiona—her body just a bean in my womb. When the technician passed the wand over her chest, he captured the flat, gray flickering thing that was, beneath her ribs, a wet red heart.

The nurses came in to check on her, to coo at her, to giggle with her and tell me how gorgeous she was. Thank you, I said, like someone was telling me Audrey Hepburn was gorgeous. Yes, of course, she’s gorgeous. All the while, the lights were dimmed low and the light fixture bubbled and Fiona rested her hand gently on the technician’s sonogram wand.

It was a lovely way to spend an early morning.

You’d never know we were measuring her congenital heart defects.

***

Genes are funny things. Miss a few, and a whole host of systems are affected. I learned recently that Fiona is missing approximately 121 genes. It’s estimated that the human genome contains about 20,000 genes. I plan to know more about genes in my lifetime, but this is about all I know: they are not like pages of blueprints. They are like architects. Miss a few, and the others have to compensate. Sometimes the others can’t. Sometimes your window-maker is missing, and the other architects do their best to make windows, but their best isn’t good enough, and so the windows don’t really work. Fiona’s other 19,879 architects did the best they could to make what she needs. They made perfect hands and feet, for instance, and honey-brown hair and they made her a girl and gave her blue eyes and perhaps an interest, a strong interest, in terry cloth. But they also produced a 35-degree scoliosis in her lumbar spine, a tendency to seize when she’s feverish, a brain that has trouble learning how to hold a spoon, and yes, two heart abnormalities. A hole in her heart, and a narrowing of her pulmonary valve. Which means more blood is going to her lungs than is needed, and more blood is rushing into one ventricle than is needed, and though both cases are mild, all of this could produce a strain. Eventually.

After the echocardiogram, Fiona finally succumbed to the sedative and fell asleep, and I waited for the doctor to tell me the results. Were her heart abnormalities resolving themselves, worsening, or staying the same? Three pathways. Three roads diverging in a blood red wood, and we’d learn which way her heart’s been beating this past year.

The doctors these days are now my age. It’s a strange thing. They were once old and persnickety and had leathery skin and smelled like antiseptic. That’s how I saw the pediatrician of my youth. Now they walk into the room with spiked hair and references to the latest pop song. Now they have pimples. Now they tell me they are starting their own families, their wives or themselves just twelve weeks along. They are, in some cases, younger than me, and folks, I don’t consider myself that old.

So today’s cardiologists walked in, the attending with gel-spiked hair, his fellow a smaller guy with a proclivity for yawning, and they told me the news. The hole in Fiona’s heart was neither shrinking nor growing. The narrowness in Fiona’s pulmonary valve was neither narrowing nor expanding. Status quo, the doctor said. Staying as is. Mild heart disease, the fellow said. No reason to intervene right now. Still a chance the issues could resolve themselves.

“Congenital heart defects are some of the most common,” the attending said. “In all people, not just people with chromosomal abnormalities.”

“Why?” I asked. “Because the heart is so complicated?” I was thinking of the giant map of the heart to my right, and all those ventricles and valves opening and closing, taking the blood in from the neck, sending it out to the legs. All the ways the doors could jam or turn trap.

“Good question,” he said, which I’ve decided all doctors are trained to say, but which nevertheless works in making me feel accomplished. Yes, hearts are very complicated, I thought he’d say. The organ that I’ve chosen to devote my life to is a complex, twisted work of art, I thought he’d confirm. But in an unexpected move, the heart doctor diffused the potential romanticism of the heart. “It’s really not that complicated. It’s just a pump. It only looks complicated because we can take pictures of it working. But if we could take pictures of, say, the thyroid working, it might be just as complicated. But we can’t. We can only measure the hormones. So there could be just as many possible congenital defects with other organs. But we can’t measure them as well. So we don’t know.”

Those blob-like organs—the kidneys, the liver—they are mysterious little suckers. There are secrets in their amorphous, indistinct flesh. The heart is obvious. It shows off its dance, and it even makes its own music, and then we can photograph it and tap our pens to its beat. And because people are amazed by it, whole art-adorned and expansive wings of hospitals are devoted to it.

If the hole doesn’t resolve itself by the time Fiona’s four, they say it probably never will, and at that point we’ll consider ways of fixing it, and fixing it might improve the narrowing of her pulmonary valve, but it might not, and either way they plan on leaving that valve alone. It’s the hole they’d like to fix. The hole that they’ll keep an eye on. Every year, Fiona will be lulled into chemically-induced drunkenness fit for a Fiona-sized person, and a technician will press a wand into her chest and click and snap and forward the images to the doctors, who will read them and tell me yet again whether we’re walking down the worsening road, the bettering road, or the road that just stays the same.

And every year I will lie in the dark with my daughter and watch the light fixtures and listen to the bubbles, thinking about all the mysteries inside her, all the things no sonogram will ever find, all the ways her architects had to make do.

 ***

If you want to read something good about the heart, I highly recommend The Wet Engine, by Brian Doyle. Doyle’s son was born with only three chambers in his heart, and he writes a compelling little ode to the organ and to the cardiologist who saves his son’s life. I told Fiona’s cardiologists, they should totally read it.

How Florence + The Machine Gave Me My Mantra

Tonight, I check my Facebook feed to learn that not one, not two, but three of Fiona’s Wolf-Hirschhorn Syndrome peers are in the hospital.

Yesterday, it was two others.

This is not uncommon. I’m Facebook friends with many parents of kids with Fiona’s genetic deletion, and pretty regularly, somebody reports that his or her child is in the hospital. Photos show kids head-wrapped in gauze and getting EEG’s, or curled up and sleeping in a hospital crib, or sometimes standing by the hospital room door, looking into the busy hallway of nurses. With the latter, the photographer reports that the family’s just waiting on a discharge. Can’t wait to get home. And we all cheer, virtually, when someone reports, “Finally home!”

And then the next day, another spat of seizures for another kid. Another bout of pneumonia for another kid. Needless to say, my heart always breaks for them. I know that on a few occasions, it has been us, and it could be us in the future.

A line from a song has become a mantra for my life as Fiona’s mother. The line’s from “Rabbit Hole,” by Florence + the Machine. “This is a gift,” Florence sings. “It comes with a price.”

I started running to the song, early on.  When I say “early on,” I mean in the first few months of learning Fiona’s diagnosis. It’s a strange statement, early on, because it refers to the fourth month of Fiona’s life, and yet her genetic condition was present at the mustard seed start of her existence, through twelve weeks of nausea, a second trimester of relative energy and an adorable baby bump, a subsequent third trimester of more nausea and an expanding bullet belly. Always there, beneath the empire belted tops and elastic waist pants was not only Fiona, with her beauty and light and delight, with her ten fingers and her ten toes burgeoning or webbed or fully formed, but also her missing genetic material. The thing that would make cells carve her heart a little different; her brain a little different; her spine a little different. Even her nails would grow a little different. It was always there.

But the world changed after that diagnosis, in small and large ways. Any vision of my child’s future got wiped clean as a slate. Walking? Not a given. Speaking words? Also not a given. And much, much more. Many things became, not just questions but now improbabilities. I won’t list them because to list them is to make them seem more permanent, more fixed in this world, and I like to believe Fiona can surprise us, but suffice it to say, I no longer envision my child’s future as most parents can, as I did when I was pregnant with her. So many things changed for me after that diagnosis.

In the category of the small changes, the Jay Z and Kanye West hits of my usual treadmill runs were suddenly too vacant. Too shallow. I needed someone who was singing her heart out. Who was laying it bear to the beat of heavy drums, so I could pound away on the treadmill and, if need be, cry at near sprinting speed. Florence + The Machine it was.

And I stumbled upon “Rabbit Hole,” which opening I didn’t even like. But eventually Florence sings it again and again.

This is a gift.

 It comes with a price.

At first, the lyric was a single bell note ringing in my running ear. Especially the first half. This is a gift. At the time, I was processing the geneticist’s words. I was preparing myself for swallow studies and kidney ultrasounds. I was raring to learn whether my daughter could even handle her own saliva without silently and slowly choking herself with it. I felt like I was in a private little hell.

This is a gift.

Indeed, the “price” part was apparent. But the gift part, I couldn’t always sense. Not “early on.” This is a gift, Heather. And not in the “pain makes you stronger” kind of way. But simply that she, my daughter was a gift. This little girl was a gift. Don’t let her genetic deletion make you ever forget that, at her core, and through all her layers, she is a gift. I came home sweaty after my run, and she let out little bubble bursts of infant giggles. And then scowled at my salty skin when I tried to nurse her. Which made me laugh.

Now the lyric pops into my head regularly. Sometimes only one half pops into my head. Then the other half follows.

This is a gift.

Her thumb on her upper gums, awakening her mouth to its sounds, and she sings a primitive melody of o’s and a’s and v’s. Ova, Ava, Ahh. Her twinkling blue eyes and dimpled cheeks when she smiles as I shake my overgrown hair. Her gasps and squeals and shouts of glee when I bounce her up and down on the yoga ball. Her evident and immediate joy at any person’s attempts at a dance move.

But then she refuses to drink the bottle I’ve made, and I know what the scale read at the last doctor’s visit and feel in her bones the lightness, the sense that she’s gained maybe nothing in the past few weeks. Or the geneticist says, Yes, that scoliosis looks significant, and I dwell on it, the word significant. A monument is significant. A crater is significant. My baby’s spinal anomaly is also significant?

It comes with a price.

Tonight, the price is most pronounced in other peoples’ lives. In the parents and the kids who are once again sitting in the ER.

Tonight, the Laniers will all sleep in their own beds. This is a gift.

Fiona’s bed is a co-sleeper right beside ours, so that we can listen for changes in her breathing just in case she has a seizure. Almost once a night, one of us, my husband or I, jolts up at the sound of stuttered breathing, looks into her bed with a surge of adrenalin only to see that, no, she’s not seizing. Then we try to calm ourselves back to sleep.

It comes with a price.

The mantra soothes me. The one statement flows into the other. It’s a wheel. They don’t need each other—I don’t feel I need to pay for the gift of Fiona. And I don’t feel the price owes me the gift. But they do exist together. When I dwell too long on the price of this life—the hours and co-pays spent at doctors offices, for instance, and in therapy appointments and with medical tests—I remind myself: this is a gift. I remind myself to adore her cockatoo hair-do and her new penchant for bouncing in a supported stand. This—all of this—is a gift.

And when I’m riding steadily a wave of stability, when I almost forget about missing genetic material and when she’s on a roll with eating and growing and learning a new thing or two, and then all the sudden I wipeout in the sand because of some fresh concern, another test she needs, another unexplained fever which might bring on a seizure . . . Ahh, there it is. The price.

Leading always to the first. Reminding me again and again of the first. Even through the fog of interrupted sleep: the flutter of her feet when she kicks excitedly in the highchair, the L-shape she folds into in sleep, her small heart pressed against mine in the infant carrier, her eyes following her dad as he dances across the kitchen: This is a gift.