I drive by Randall Children’s Hospital a lot less than I used to now that I have switched jobs. The road that passes by is not a constant in my world anymore, for which I am thankful; it did mean, however, that when I sped by tonight, my stomach jumped with a worn panic, rutted like a well-paced path in my living room carpet. And now, hours later, I am again sitting in memory of a feeling. For longer than I am comfortable with admitting, we thought the impossible: that we might lose you.

May 2013. It’s early morning. The day is full of sunshine, but walking from the parking lot to the sliding glass doors, there is a bite in the air, a chill. It’s a warning but of what, I’m not entirely sure. In the bright red cloth bag that I grabbed from the back of your kitchen door, I have breakfast: eggs, bacon, toast, coffee in a thermos. The little comforts of home. Just inside the lobby, the smell of the hospital, sterile and impersonal, assaults me and I rush to the bathroom just in time to puke.

Your room is on the 7th floor. The elevator buttons are all labeled with a different color and animal; yours is a yellow kangaroo. Pediatric ward. I am buzzed into a floor designed to be friendly, with gentle lighting and colorful carpets, walls full of kids’ paintings. But there’s no outrunning the tension lingering just below the surface. Silently I walk the long hallway back to your room, with the tall door, opaqued glass and light wood.

You are sprawled across your mom’s lap, boneless. I had no idea hospital johnnies were made so small. You have a onesie on underneath, white with pink butterflies and flowers; it hangs open at the bottom to accommodate the various wires that snake out to hook to the machines by your bed. You are in mismatched hospital socks, one blue, one green; there is a gauze ribbon around your still mostly bald head to hold your IV into place and my heart stops at the sight of you. There is a little smile that lights your face when you see me and I kiss your palm, holy grace in your small hand.

Midmorning. The doctor, a small Asian lady, brisk and kind, explains that you don’t have a tumor. No meningitis, no mass, no horrifying childhood disease. We exhale collectively, the three of us who love you most, reveling in a dash of relief. Then she says “but that means we don’t know what’s going on here.” It is intimately honest and terrifying. I press my lips together until I’m sure they are bone-white; it is to stifle a scream. “How can you not know? Fix her! FIX HER!” Instead, I stare at her, memorizing the features of this person whom we have entrusted you with. I stare at the over-clean floor and your graceful features, dwarfed by the enormity of this moment. My blood quickens and I’m craving two months ago when you went down the slide by yourself for the first time. I’m desperate for a dirty diaper, longing for a rainy walk, looking anywhere I can for normalcy. Looking, my buttercup, for you.

You won’t let me hold you, and it’s ripping my stomach apart. No one but your momma is approved today; that’s how it should be but I’ve been mom lite since the day you were born. I’ve always been the one you go to first when your parents aren’t there. We have snuggled so many mornings and I have bandaged your knees and you always, always have found me to be enough. Today that’s not the case and I’m jealous. It’s a horrible color on me. It drops in my stomach like a weight. This is a horrible paradox, this endless waiting: all we want is the next person to come in to tell us what is wrong, all we don’t want is the next person to come in to tell us what’s wrong.

Halfway through the morning, you suddenly smile and reach for your dad. How did you know your mom needed a break? He kisses her, and then you. Your mom slides over to sit next to me on the bench by the window, overlooking the ambulance bay and giving us a view of the rich west hills. They are busting with affluence. I know that wealth doesn’t equal security in this setting, but I can’t help wondering if having more money would mean we would know what is wrong. That’s absurd, but then again, this whole thing is absurd. In the rocking chair, you are tiny in your father’s arms, tangled against his long limbs. Today you are the mirror image of your mother, but we call you our chameleon baby; in the right light you look like me, like your dad, like your Mimo. Sometimes you look like your long-dead great-grandfather.

Noon. You are asleep, arched in your mom’s arms, head back and torso twisted, jutting up like crumbling pylons out of the waters of the Willamette. This feels disturbingly comfortable. Since you started sliding into a creature unfamiliar, one who didn’t eat, who screamed incessantly, who couldn’t lay back to snuggle, we knew. We knew something was wrong. We are a team: a family embodying the idea that it takes a village to raise a child. In that closeness, we find a fault: the lie we tell each other is that we will get through this unscathed. We avoid each other’s eyes, safe in the lack of acknowledgment that we can’t fix you.

I should go back to work. Instead, I go home. I take off my clothes and lie on the bed in my underwear. Bare-skinned, I weep.

If a dandelion’s greatest fear is the possibility that someday someone will come along, pluck it up, and scatter its tendrils to the corners of the earth, then mine is losing you.

Early afternoon. This time the elevator is joltingly familiar, as is the phone I use to call into the ward. You are up on your feet; your mom is on the phone with her mom. You turn and your face explodes with happiness. Your mom whispers to me, “Her pain meds are finally working.” You wobble towards me; walking is now a minefield. I reach for you and you grab onto my hands like you haven’t done for months. The improbability of your regression is huge, in the 24 hours you’ve been here you have forgotten your confidence. If I could track your evolution, like pinpoints on a graph, the final picture would be an unclear path, muddied like water in the puddles you love to stomp. I wouldn’t know where to start trying to figure out where this went wrong.

You snuggle into your mom’s lap and I whisper “Can we go for a walk?” “Sure,” she says, “but check to see when they’re going to round next so you’re back in time.”

Hospital vernacular: round next. The landscape of your unnamed illness is a foreign place, as odd as Mars would be. I don’t even know if we’re breathing the right air. In the hallway, you take a few fast steps and pitch towards the wall. I stop your fall just in time, scooping you up and settling you on my hip, where you wiggle in discomfort. I’m not sure what hurts you right now. I am gentle with you where usually we roughhouse. No raspberries, no tickling, no twirling in circles. Finally, I figure out that if you’re close to a wall, you’ll reach your feet out and push at it. Soon we’re playing “blast-off”: you push at the walls while I jump backward shouting “blast off!” We play this game over and over.

We wander in and out of empty rooms, looking out the windows.  Your eyes are crossed as far as they can go and in exhaustion, you lean your head on my shoulder. As we ride the elevator downstairs, I wait for you to ask to push the buttons. You don’t. We make our way to the windows in the atrium, staring at the gently rolling slopes covered in the fake grass. Maybe they’re supposed to be cheery. To me, they are too clean, but you are fascinated.  You bang your hands on the glass, breath on it to create fog. Finally, losing interest, you teeter down the hallway and I follow closely behind; you grab my fingers. “Up, up.” I cradle you in the bucket of my forearms, and we look at the birdhouses on the wall. You touch them and giggle; I kiss your neck, breathing in your still baby scent. At 15 months I thought you were so big. Now I know you are the smallest creature in the world.

Afternoon. They round on you. An ominous phrase! As a predator rounds on its prey, they bear down on you. Your wonderful nurse sings to you as she checks your temperature and we blow bubbles, but in your wonderful focus you are distraught and aware of your current predicament. You wail hopelessly and I can’t figure out why it’s not making me weep. When they are done your mom and I sit on the floor with you. She reads you stories. I do homework, pretending that something is more important than this. Occasionally we exchange a few words, but mostly there is a comfortable silence between us. This is too much for discussion right now; all we need is to hold it together. Today we stand overlapping, one in front of the other, and you are the heart of the maze. My hands are weaker than yours, yet in your example, I do what I can

Late afternoon. You disintegrate. They lay you down for a nap; your mom brought your birth quilt and you snuggle into it.  The nurses gave you a stuffed elephant the first night and we’ve christened it Harry Elephante; you wrap your arm around it and are quickly asleep. They look at each other and some reserve that they have been holding onto for your sake drains away.

“Guys? If you want a break, we’ll be ok.”

Your mom looks at your dad. There is a great and terrible grief in her face.

“That would be great. We have our cell phones.”

“I’ll text if we need you.”

I curl up in the chair, alternating between watching you and watching the sky. I pretend that this is a bad dream; I stroke your small toes in between the metal slats of your bed. You are still sleeping when they return holding hands. Your mom’s eyes are red. These moments when we can step outside your room, exit the eye of this hurricane, are brutally necessary. Here it is too calm, and out there is the horrific screeching of reality sweeping towards us.

The doc comes back to check in but you are still sleeping. She pulls your parents outside the room and I listen at the door, leaning my head against the cold wall. “You’re definitely going to be here another night. I’m sorry. We’re thinking it’s idiopathic intracranial hypertension.” There is a quiet exhale from your mom, and through the crack I have opened, I see your dad puts his hands on his hips in an uncharacteristically aggressive stance.  Later they explain it to me: extra fluid in your spinal cord is putting pressure on your brain. There’s no direct cause, meaning there’s no easy fix. No fix at all that they know of yet. It’s terrible, painful pressure. It is encroaching on your optic nerves and the doctors are worried about your eyes. Your gently direct, beautiful sea-foam eyes. They’re worried about your brain. Your sharp, advanced, determined brain. I‘m worried about your heart. Your parents are worried about everything.

Your dad goes home to walk the dogs and get some things for the night. We take another stroll, just around the ward this time. There are kids crying hysterically in several rooms. The hallway is devoid of other patients and I’m confused until I realize that you are one of the only kids well enough to leave their room. In one we can see a child sleeping. She’s not much bigger than you and she has no hair. I hug you tight to me. This could be so much worse. We’re lucky. Then I am disgusted with myself for thinking that. This place is bringing out the worst in me.

How do we find gratitude in such a desolate landscape? We open our eyes and see all that you still are, and not that which has been taken from you. We open our eyes and see that others here are suffering immeasurably, beyond our capacity for understanding, beyond our capacity for empathizing.  In the ugly, thick comparison we clutch our own fortune.

Evening. Your dad comes back with clean clothes for you and your mom. We have dinner. You struggle with balance but truck between us, tracing a path between the people you love most. We try to feed you but your appetite is worse than ever. As your pain meds start to wear off, you ramp up into hysteria. This may be the worst part.  You who cries when you’re tired or needing a new diaper and you who cry nowhere else, you are now a weeping mess. You cry like an old lady who has lost the love of her life, you cry having abandoned hope that you will feel better. Finally, you are again in your mom’s arms, head arched back in that sickening curve no neck should ever make. Your dad gets the nurses to dose you with the heavy-duty baby ibuprofen and you settle.

The sun sets and I kiss you three times. I want to kiss you fourteen times and hug you for an hour and read you Jamberry until your eyes close.  Instead, I whisper that I love you more than anything into your downy red hair. I tell your parents I’ll be back around 7:30 tomorrow with breakfast.

Night. Somehow it’s night by the time I return to the lobby. The wind picks up.  I wish it would rain. You love the rain! We are ducklings, you and I, the only Oregon-born members of our family. It brings comfort and a rebirth; maybe if it rains you’ll be ok afterward. The doors open with a whoosh and I walk away from the hospital. I walk away from you. If the docs said it would help, I’d stand out here all night.  I ‘d curl up on the floor by your bed. If I promise to never tell you it’s too late for one more reading of Hippos Go Berserk, if you never cry alone, if we only feed you organic food, if we promise you will never know what it’s like to feel unloved, will that make you better?

Maybe tomorrow will be better. I bring a framed picture of us into bed with me, and fall asleep with my hand touching your face. The first morning your mom put you in bed with me on her way to work, you had your green blanket and your stuffed puppy. We snuggled and watched the moon through the window by our heads. I sang as you grunted yourself back to sleep. You put out one small palm and astonishingly it landed right over my heart.

Idiopathic intracranial hypertension.  Three words, 14 syllables, one  MRI,  two spinal taps,  four IVs, one metal-slatted hospital bed,  two unsteady tiny feet, a one stuffed elephant, three broken hearts, one intact. Maybe tomorrow will be better.

October 2015. You are three and a half, all coltish and long-legged. Silence is a rarity. You scribble pictures as bright as the ones on the walls and proclaim every wonky line a heart.  You still have Harry Elephante on your bed; he is surrounded by princess dolls and blankets and stuffed animals. The dogs chewed his eyes out and he is worn, his fur softened after countless hugs from your small hands. He is our reminder that even in the worst moments you carried within the capacity to love whole-heartedly.

You spent the night here the other night.  We went to Powell’s Books, which you sang about on our way; we watched SuperWhy and you called out the letters as they came up. You fell asleep with your legs draped over mine, hands wrapped around the Sven stuffed animal that usually perches on my bookshelf. At 5:30 a.m. you crawled into my bed and I wrapped my arms around you like a blanket, like a seatbelt,  like anything that holds a person safe. We are back to having adventures all over Portland. On rainy Saturdays we go to the trampoline park, where you fling yourself all over the place, bumping into the bigger kids and jumping off of the ledges to fly as high as you can. Across the river is the expanse of Forest Park, where we go to hike and examine slugs and pick up sticks. Just before Christmas the year you were sick, your nanna and I took you up there for a walk. After running with her, you fell asleep in the backpack. Your head tumbled onto my shoulder, encased in your beloved Thomas cap. I held onto your feet with both hands, creating a closed circuit between us, the constant beginning in your steps and all I had to offer at my fingertips.

Long after you leave the hospital, years later, we still reel. Like a healed burn, we find a scar, shiny with new skin and ever-present. Now we are overly cautious, leaping to action at the smallest indication you are experiencing the same symptoms as during those dizzying weeks. Anytime you have a sleepless night, we panic. Anytime your baby sister screams when lying down for a diaper change, we panic. Anytime either of you is sick for more than a week, we panic. This is not normal, we think. Even though it is.

These days when you walk, you run.  You take the tumbles of toddlerhood and bounce back to your feet, wailing in humiliation. You refuse comfort. You take a moment to wipe your hands, say ‘brush off and go’, and off you trundle. You love to be tossed in the air, sit on our shoulders, and flip out of our arms. You twist and torque and remain intact. It’s our job to break, because you don’t know how.

It wasn’t better, not for a long time. Now you are a beloved and doting big sister, kissing ‘your baby’ a thousand times a day. You’re a fool for Elsa and all princesses; you demand that we play pretend every day. You are always the heroine, casting the people in your life as the other characters around you. Mama, you be Mother Gothel! Daddy, you’re the Beast. You know all your colors and can count to twenty, you ask us questions like ‘why do you love me?’ and declare us to be ‘the best family ever’. You have more sass in your little pinky than most people do in their entire bodies. You share well.  You’re so easy-going, you’re the most popular kid in the neighborhood. Everyone loves you. You turn 4 in four months; we are so grateful. This rough and rainy road has brought with it a plethora of flowers: you are strong. We are grateful.

You are loved. We are grateful.

Your eyes are back to normal. We are grateful.

Your community raised $1,800 for your medical bills. We are grateful.

Your doctors were stellar. We are grateful.

You are light and wisdom. We are grateful.

Thinking back, I remember how small you were your first day, how much you looked like your mom. I remember the stunned joy on your dad’s face when he appeared out in the hallway. Hell, I remember vividly the first time I felt you kick in your mama’s belly, a slapped fluke sweeping across the surface.

It took me two days to fall in love with you. Your second night, I held you while your parents ate. I lay down on the bed, snuggling you up on my chest. You fell asleep easily as your dad draped a blanket over us. The rain was falling outside. I rubbed your back and crept my finger underneath yours. You curled them around mine and sighed. It was a done deal from then on.

You are not mine, but I am yours.

We are forever grateful.

Photo Credit: unsplash-logoAditya Romansa

in consectetur Sed at felis elit. suscipit