Let’s Not Think About Tomorrow

August 3, 2018
Jessica Rice Photography | jessicarice

Written By:  Maggie Montague (Aunt Maggie)

I swore I would never be one of those people whose voice skyrockets in the presence of babies, bouncing between cheerful highs, soft coos, and inane giggles. And, for the most part, I’ve kept my word. My voice has remained steady while my friends and family spoke like airy chipmunks. It wasn’t that I didn’t like babies. I just didn’t understand how a baby could turn adults into drooling idiots. However, when I met you, Nora, I became just as much a fool as the rest of them. My voice dripped with sweetness. High-pitch refrains of “yes, you are the cutest” danced past my lips. And it wasn’t just my voice that surrendered, my eyebrows wiggled, my nose scrunched, and my mouth contorted into all sorts of strange shapes. All I wanted was to make you smile.

When I first met you, you were three weeks old. I was home from college on spring break, and you were so small. “Nora, this is your Auntie Maggie,” your mom said, shifting you into my arms. I was afraid to hold you, but I did anyway. We nestled into the corner of the couch, your head resting in the crook of my arm. I doubt you remember our first meeting since you slept for most of it. I stared down at your little face, fingers, and toes. I kept waiting for you to cry, to realize you were sleeping in the arms of a stranger, of a baby-talking novice. Without looking up from your scrunched face, I told your mom a story. When I was a baby, my brother Jonathan, who was five, often held me, but when he decided he was done, he simply relaxed his arms and let go. My mom, you know her as Vava, hovered nearby, ready to catch me as I rolled from his lap. Maybe not the best story to tell your mom while I held her baby in my arms, but I wanted to make her smile, too. When I looked up at her, she was asleep in the other corner of the couch. For the moment, you were safe, so she could rest.

Nora, though I am not your auntie by blood, a lifetime of knowing your mom granted me the title, and from that first moment I met you, I promised you I would do my best to live up to it. Two and a half years later, as I stand next to your crib at the children’s hospital, I am still trying to keep that promise.

A few months after you were born, your mom realized something wasn’t right. The signs were subtle at first, an unusual drop of the head, your eyes rolling backward, your sudden weakness and exhaustion. But Nora, you know the symptoms better than I do. Your mom’s nurse friend held you, scrutinizing each movement, and confirmed your mom’s suspicions. The doctors didn’t know what was causing the seizures, every week a different theory. I was in Washington, far from you in California, when I first heard what was wrong. Vava called me with the diagnosis. I misheard her say “egg-heart” syndrome, and pictured your fragile organ shelled in white. It’s been about two years since I first heard the term Aicardi Syndrome, and I am still sifting through medical websites and pamphlets, trying to understand what exactly you are going through and what to expect. I’ve gathered that it is a rare genetic neurological condition that affects girls, something to do with the dominant X-chromosome. You can’t control your body the way you want to. The seizures wear you out, making development difficult. They say you most likely won’t be able to walk or talk on your own. But Nora, they haven’t seen how determined you are, how strong. They haven’t heard you stringing together sounds, trying to form words we can understand, or kicking out your feet, wanting to explore the world through your soles. They talk in single digits, employing phrases like “quality of life” and “shortened life expectancy.”  But we don’t think about that. It’s too much, too hard. The future can stay far from us. We think about today. Today you are fighting.

When I first heard that your mom was pregnant with you, I wrote your parents a long letter congratulating them, because I was two states away, and I can be quite corny like that. I don’t remember much of what I said, except to avoid initials that spelled DEVL or EVL—I thought they might lead to mean jokes at school—and my signature, “Love, Auntie Maggie.” There is no brief way of explaining how your family and mine are connected. When I try to draw out the connections of our families on a scrap of paper, it ends up looking like a double-knotted shoelace. Put simply, we are family, always.

Right before you were born, in March 2014, I began making a children’s book for you, The Dreamer’s Hat, about a boy whose red-and-blue baseball cap holds all of his dreams. His hat grows as he dreams at night, but the Swargle beast, a scraggly purple-haired, large-nosed monster, sneaks into his room and steals the hat. The boy searches high and low but cannot find his hat or his dreams. He realizes that one way of finding his dreams again is to live them. He travels the world and swims across all seven seas. Through these adventures, he encounters the Swargle and has enough dreams to share with the beast. The story was shaky, and I got a little carried away with the illustrations. In the end, it took me about four months to complete, and by that time you’d been born and the seizures had begun. I had the book printed at a print shop in a red, brick building. When I got home, all of the pages fell out. The binding hadn’t held, so I tried duct tape and glue, far too much, because when I was done, I could no longer open it. And then I threw it against the wall. Nora, that book made me a little crazy. I wanted it to be perfect for you. I ended up reprinting it and binding the pages with a ribbon. The book drooped from the weight of glue and tape, looking like something from an elementary school art fair. I wasn’t sure if I wanted to give it to you anymore. The story spoke too much of living out your dreams and not enough about learning how to hope.  I feared my words wouldn’t help you. But Vava insisted I give it to you. And I did. Today, the flaws of the book don’t seem so important. I’m glad a piece of me stays with you, even when I can’t.

Last Thursday, July 28, I got to spend a day with you. It was one of your good days, before you were readmitted to the hospital on Sunday. You leaned against my chest as fairies tinkered on the TV. You were still waking up from your nap. It was lunchtime. Your formula flowed from the bag down the tube and through the plug into your stomach. Your legs stretched out on my lap, passing my knees. I still can’t believe how long you are. You wiggled when your favorite fairies flashed on the screen. You liked the dorky characters most. You kept checking to make sure I was watching. I was. You struggled to fully open your eyes. Your mom watched you, noticing each breath, each movement. Her hair hung loose around her face, and she tucked the strands behind her ears so she could see you better. She looked so tired, her stomach huge with your little brother kicking away inside, dark crescents under her eyes. Last summer, you were starting to sit up and reaching with your good arm. You were beginning to learn sign language. You were smiling. This summer, you can barely hold yourself up. You’ve been in and out of the hospital with pneumonia since April. The seizures wear you out. I know this frustrates you, Nora. You want so badly to play.

I listened as your mom weighed every decision, every new medication, every change to your diet. I know you know this, but Nora, your parents are so strong. They’ve become experts on your syndrome. They’ve grown so much wiser and more resilient over the past two years. I often forget they are only twenty-seven years old. I remember your mom crying out of frustration at her wedding reception, because she just wanted to be able to sit down and her fitted dress wouldn’t let her. “Can I leave yet? Do you think Tyler wants to stay?” She’d asked, her exhaustion clear. We’d looked for your dad and glimpsed his head bobbing up and down on the dance floor. They were still growing up.

Your brother was due on August 13. Your mom and I agreed that we needed to get this baby moving sooner than that. I wanted to meet him before I left again. We googled natural ways to induce labor. Your mom read them to me as your head rested in my lap, your legs kicking out, kneading your toes back and forth on Tahoe’s golden back. He didn’t seem to mind, his tail wagging and head resting on his paws. The list ranged from practical to ridiculous. Some of the highlights were bumpy car rides and nipple stimulation. You liked hearing us laugh. For all our talk of wanting the baby to come soon, I knew your mom was scared. Even though she understood your brother couldn’t be born with the same disease as you, she couldn’t imagine having a perfectly healthy baby. She didn’t know what to expect.

Later, we sat on the floor with a book. I started to turn the page, but you reached to do it first. You looked up at me to make sure I saw, and your cheek rose into a half-smile. Your baby teeth poked through your gums, your chubby cheeks flushed red, and long blonde eyelashes tangled around your blue eyes. I didn’t see your syndrome when I looked at you. I saw my niece, excited by the turn of a page. A few minutes later, you slumped forward. Your arms dangled at your sides. Your neck lost its strength, and your head fell toward your knees, but my hand was there to steady you. You slowly regained control. I reached to turn the page, giving you time to take over. You lifted your hand, but it fell before touching the book.

“That’s okay. You’ll get it next time,” I whispered in your ear as you slumped forward yet again.

Today, August 3 at 11:42 a.m., your brother was born. He is in the Mary Birch Hospital, and a few blocks away, you sit in a blue plastic therapy chair in Rady Children’s Hospital. I’ve been remembering the beginning frequently, those first moments of meeting you, the first phone call about your diagnosis, the first time I returned home to find you’d grown longer. Today especially, I remember those firsts. Your grandma and I do our best to ignore the bustle of nurses and doctors in the hallway and the cold hospital air on our necks. We focus on making you smile. You study my face. I’ve seen that look before. I lean closer. After a few tries, you snatch my glasses off my nose. You dig your feet into the hospital toy bag, trying to wrap the bag’s string around your toes. I place my hand next to your head, just close enough so you can rest it on my palm. At first, you refuse my help. “I got this,” your blue eyes tell me.

“This is the most open her eyes have been since she’s been here,” your grandma says as she leans forward to kiss your cheek. Then you lose focus. Your head slumps to the side, finding my hand. Soon, you are back at it, trying to pull the bag closer, but more and more you rely on my hand, as though your head has grown heavier.

Soon enough, it’s naptime. Monty, your grandma, and I make sure that your tubes don’t tangle as we slide the chair out from under you and lay you on your side. I know this frustrates you, because the weight of your body traps your good arm under you, but you are able to wiggle it free with a little help. I stroke your head the way I’ve seen your mom do, since she can’t be here. She’s busy introducing your new baby brother to the world. “I just met your brother, Nora. No name yet,” I whisper. I know you’ve already heard this news, but I want to tell you anyway. “He has really long fingers and a squashed, little face. Healthy and adorable.” I lean closer to tell you a secret, “To be honest, I think you were a cuter newborn.” You fight to keep your eyes open but drift off to sleep clutching your stuffed mermaid. My fingers continue to run through your hair, weaving through your strawberry blonde curls. You look like you did last Thursday when I hummed you to sleep in your room at home, except for the tubes. There are so many, the oxygen tube on your face, the IV in your arm, the oxygen monitor on your toe, and a few others dangling off the bed. I try to imagine we are back in your room, staring at your bookshelf, trying to pick which book to flip through next, but the glowing red oxygen monitor taped to your big toe distracts me. I stare at the screen next to your bed, trying to make sense of the numbers. Monty says that we want the respiratory rate lower and the oxygen higher. Nora, I know you are doing the best you can.

From your window, I can almost see the hospital where your mom, dad, and baby brother are recuperating from a long night, but it’s blocked by yet another hospital. The entire drive from my house in Fallbrook to the Sharp medical center, Vava kept talking about scenes in Parenthood and Father of the Bride Two, scenes featuring a mad dash between hospital rooms, Steve Martin’s frantic face. We’d received a text at 4 a.m. from your mom. Her water had broken while she was at your bedside in the hospital. Your dad had dropped her off at the newborn hospital and returned to your side. I can’t imagine how torn he felt, but your mom is a badass, and she didn’t want you to be alone. He stayed with you until your grandma could be here. We were reinforcements, bringing lunch to both sets of grandparents and your aunt and uncle, who were rotating between hospitals two blocks from each other.

Vava, Monty, and I fed the group at the newborn hospital first. The newborn hospital doesn’t have the same atmosphere or style as the children’s hospital. The children’s hospital, where you are, looks exactly how I would have imagined it, with long, white hallways and a sterile smell, but the walls bright as an elementary school’s, decorated with rainbows made from construction paper and children’s drawings. The rooms have color splashed on the walls and toys scattered on the floor to trip over. But the newborn hospital lacked the colorful and eclectic walls that surrounded you. It reminded me of a museum, as though labor and delivery were fine arts that needed a carefully curated space. The waiting room was packaged in crisp earth tones. The colors nudging the fidgeting guests in the waiting room to remain calm, as if saying birth is a natural part of life. The brown couches loop together, creating semi-circles throughout the room. Large, fogged glass panels line the hallways, creating the illusion of space. We weren’t the only ones in the waiting room, but we did take up the most space, lined up against one of the walls. I put together sandwiches, passing them out as we waited for your brother to arrive. Vava, Monty, and I were there for about ten minutes before your dad emerged from the delivery room wearing a huge smile. Your brother had been born. Your dad’s parents and Uncle Jeremy were blocks away at your side. I know they showed you a picture of your baby brother and that you reached for him.

I got to see him after your grandparents. His eyes were closed, as he lay sprawled on your mom’s chest. I stood very still, gaping at him and his long, wrinkled fingers. When they put a blue-and-white striped cap on his head, he cried, jostled by your mom’s laughter, her shoulders shaking. His cries widened the smiles on your parents’ faces, hearing his healthy lungs in action. Soon after, Monty, your grandma, and I walked over to your hospital. The nurses recognized us by the yellow Team Nora bracelets around our wrists.

The wintry hospital air raises goose bumps on my legs, and I walk over to your crib to check the monitors again. You sleep, your chest rumbling. The numbers show no improvement. I lean against the rail of the crib. I want to say I’m sorry. I’m sorry that I am so far away most of the time. I’m sorry I see you only sporadically, a week here, a day there. I’m sorry I’m leaving again soon. I’m sorry it’s so cold in here, that I can’t stop fidgeting. I’ve gotten to see you almost every week this summer. I try to forget that today is Wednesday, that a week from today, I will be on a plane headed far away from you. Nora, leaving has never been so hard. I don’t know when I feel more helpless, when I am here or when I am away.

Vava joins us in your room, wrapping your pink crocheted baby blanket around her shoulders. You sleep as the first team of doctors comes in to discuss your most recent x-ray. Today’s x-ray is worse. Your lungs aren’t working as they should. The primary doctor keeps opening and closing her fist, trying to explain that the alveoli are closing and need to be opened back up.  Her gestures are violent, as if she’s describing an explosion.

“We need to be more aggressive. We just need to pop those alveoli back open.” She flicks her fingers out. “So we will push air into the lungs, using this,” She holds up a clear balloon-like tool. I think you would like playing with it, punching the balloon, the air whizzing out in loud bursts. You love making music.  “To pop those alveoli open.” She ends her explanation with one more pop of her hands. Her voice booms, emphasizing the last word of each statement, punching the air with each “pop.” I am surprised you can sleep while she is talking. I don’t say anything, uncertain what questions to ask. I just know that I don’t want them to pop you.

Nora, your grandma amazes me. She makes sure that all the doctors are on the same page. She asks the questions that your parents would if they were here. She holds you steady, whispering in your ear, as they push air into your lungs. And she hasn’t slept in two days. When the doctors leave, I pace the room. The numbers on the monitor aren’t encouraging, but I let myself hope for a miracle. When I was in third grade at my Lutheran elementary school, I learned that big kids don’t believe in miracles. I do not know if that was my teacher’s intended lesson, but that was the message I took away. I was curious just like you are, Nora, and often asked questions that my classmates knew not to. I’d asked if miracles still happened like Lazarus being raised from dead. And my teacher had replied, “No, we don’t need those kind of miracles anymore, because Jesus rising from the dead was the ultimate miracle.” I wanted to ask why, to understand what she meant, but I didn’t. Her expression told me that “someday I would understand,” and she moved on with the lesson.

Nora, I still don’t understand. Of course we still need miracles. As I’ve taken steps forward, backward, and sideways in my faith, I’ve felt her words like a splinter in my thumb, a pain that would not go away. She was so certain. I have trouble with certainty. It eludes me. But I need to believe that my teacher was wrong, that miracles haven’t gone extinct. I need to believe that growing up doesn’t mean I have to lose hope, that when I say good-bye to you, I can count on another hello.

I lean over the crib’s rail and press my lips to your forehead. You sleep, your toes peeking out from under the blanket. Monty and Vava hover over you to say good-bye. I hug your grandma, feeling her wet cheek on my shoulder. I make my way into the hall. I like to keep good-byes short, lingering leads to rambling and rambling leads to counting the weeks until I will be back again. Sometimes I sneak out without saying good-bye to anyone, but I promise, Nora, I won’t ever do that to you.

I wait for my parents on a bench outside the hospital. The sun-hot metal burns my skin. A lady wearing an “I’m a Grandma” sticker studies me as she walks by. She looks confused. I glimpse my two visitor badges, one from the newborn hospital and one from the children’s hospital. “Busy day,” I shrug. I want to tell her about you, about how you amaze me everyday, how you fight so hard, how curious you are, how you would be the best big sister, but I don’t. I just close my eyes and pray for a miracle.

Photo Credit: Jessica Rice Photography 

About the author:

Maggie Montague is a recent graduate of West Virginia University’s MFA program, an avid storyteller in fiction and non-fiction, and a lifelong friend of Jesse. She wrote most of this essay on an airplane a week after Everett was born.

Jessica Rice Photography | jessicarice.
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