I.
James Edward the Third entered the world like a limp bruise—purple against the sterile room—in a silence that hurt my ears from straining, stretching and stretching, taking with it his brain cells and future. Some of you will know what I mean. I’m sorry for that.
The only thing I heard in that bright emptiness was me. I wished I would shut up, so that I could hear him. But I whined on and on: “Is he okay? Why isn’t he crying? Shouldn’t he cry now?” Not all the doctors could understand me; it wasn’t a requirement for Korean doctors to speak English to American servicemembers who decided to give birth in their country. Then again, maybe they just ignored my undignified behavior. Even the one stitching me up refused to look up from his task.
It was the first time my son died and the first time Grandma visited me since her own death. Though, of course, I imagined the exhaustion and hysteria led to some kind of hallucination. Still, I was relieved to see her. Trying to get James to breathe took up everyone’s attention. Except hers, her gray hair set tight to her head, her little body straight and unyielding.
“White is the color of death in Korea,” she said. I didn’t know if she meant the snow blanketing the building and windows of the hospital or the room itself, and I wondered how someone who’d never left Iowa would even know that. But both would have worked. The room felt the way I imagined the inside of an igloo would—frigid and lonely, assaulting you with never-ending white. It was not warmed by this specter lurking along the edges.
My husband shuffled tiredly over to me, looking so uncertain and unlike himself that his flight suit seemed like a costume rather than the uniform he lived in. Grandma politely stepped aside, her arms folded in front of the dowdy skirt suit she’d demanded she be buried in. “He’s breathing,” James said—my husband James, I mean.
“Why isn’t he crying, then?” I demanded, trying to see past him and also remain still for the stitches.
James grabbed my hand, picking up my fingers and dropping them again. “They think he has a genetic syndrome. Maybe something else, too.” He started crying, but he didn’t look like a crying person. Water just escaped his eyes in rivulets around his Roman nose. I suppose I had just never seen him cry before.
“Like Downs?” I asked. That wasn’t so bad.
He shook his head. “No.” His eyes scrunched up, and he covered them. “They’re trying to get a translator, but it sounds like they have to take him to the NICU now.”
“Wait! I need to do skin-to-skin!” I honestly tried to hide the panic, but Grandma made a disappointed tisking noise behind my husband.
He looked torn but convinced the nurses to let me hold him. No skin-to-skin contact and no feeding, though. None of the things the internet assured me a baby needed to be healthy and happy throughout life. But he wasn’t purple anymore. A full head of dark hair and a glazed, heavenward cant to his denim blue eyes. I put his cheek to mine, and I’m telling you, it was like until that moment everything in my entire life was in black and white. Suddenly, there was color. A kaleidoscope of color. A nurse took him from me, unmoved by my mania, and the team swept out the door and down the hall like a flash mob until I couldn’t see them anymore. “Go with them!” I told James. He nodded and then said, “What do you want to do about his name?”
“What do you mean? What’s wrong with it?” I asked. The doctor was done stitching, I guess, and quietly backed out of the room.
“I mean, we should save it, right?” he asked. His eyes were red with exhaustion and loss. Shame was there, too. I saw that, but the question still hurt more than everything so far.
“No.” I said, shivering. “He has been James Edward for every second of the forty weeks I’ve spent with him,” I said and felt the weight of the language and culture-barrier insulating the two of us. Isolating us, too, maybe even from each other. “Go make sure he’s okay. Be a goddamn dad,” I said, crying and hating myself. “Put your cheek on his!” I called after him. He’d feel better when he saw all the color, I knew.
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A week before his birth, I rode my bike on the rice paddy roads—just sidewalks really, spread out to the setting sun in a web of right angles—watching white cattle egrets take off from the fields of water as we passed. Bike riding at that stage of pregnancy amounted to a delicate balance of shifting weight and downward force, but James seemed happy on those rides, always extra active so that I could feel his little hands and feet through my skin.
I closed my eyes, willing myself to recognize that he was the same boy, and it was only me who changed. But I still missed him. I missed the things I wouldn’t teach him, the games we wouldn’t play, the questions he wouldn’t ask me. My hands ached, and I peeled my fingers off the rails of the bed where they’d gripped to keep me from sobbing.
I admit I was comforted by Grandma still standing there when I opened my eyes. Until she stepped closer to me and said, “Having second thoughts about abandoning God?” I hoped it was my earlier profanity that pushed her to it, and not that she’d been standing there thinking it all along. I tried to turn to her a bit more. There they were, those pursed, self-righteous lips. “Why are you here?” I asked, snot and tears on my face I didn’t bother to wipe off. “To proselytize? I mean, why is a God that injures a child to punish his mother someone you’re recommending I worship? How petty is He?”
She smiled sadly. “How did I go so wrong with you?”
I put a pillow over my face until I fell asleep because I didn’t know how hauntings worked and feared she’d keep threatening me if I could see her. The holy ghost, I thought but didn’t say. Even though she was dead, she’d never let that blaspheme go.
II.
The second time James died, white matter mysteriously seeped from his brain, away into the night. He was three months old, but we didn’t find out that he’d developed a rare epilepsy for three more months—a total of six months of brain damage and the loss of a future in which he could speak. It was while I held him at the US Army ER, his expression unfocused, his head and shoulders spasming forward only when the doctor was not around to see it, that Grandma visited me again and I began to seriously consider her argument.
“How long has this been happening?” she asked. “It’s not a good sign.” She remained dressed as she was for burial, not a hair out of place.
“You can see it, too? Oh, thank God. His pediatrician refused to see him, said I was imagining it, that he had too many other patients waiting.” I held him closer to her so she could see his eyes. “And look, he doesn’t smile anymore!”
Grandma nodded sagely. “You know what you have to do,” she said. She put her hand on my shoulder, though of course I couldn’t feel it. “How much more are you going to let him suffer?”
I pulled him in close to me, and he kind of cooed, though he’d stopped making noises that would have progressed to words several months before. He was my whole world, as if I’d been born for him to exist. God was not really part of that world. He was the authority of my childhood, a constant threat to keep me from misbehaving, like Grandma’s invisible husband who could hurt you without touching you.
The doctor came in then. “I’m sorry,” he said, looking jittery. “I spoke with his pediatrician, and you should probably go now. We don’t think there’s anything wrong with him. I mean, anything new.” Anything new, I thought and stood up.
“You could not know if anything new was wrong with him because you have never seen him before, and his pediatrician has not seen him for months, no matter how many times I try.” Grandma sighed and sat down on the hospital bed.
“Ma’am, there’s nothing we can do. This is just how he is.”
How strange that these are the words of a medical doctor, I thought. “Transfer us to a Korean hospital,” I demanded.
“We can get you in probably within the month,” he started, looking around for something on his desk. “He has a DNR, right?”
“No, we will not wait, and no, he does not have a DNR. Why would you assume he did?” My voice was getting louder, but I couldn’t stop it. “My son has not babbled or smiled in months. Put us in an ambulance so that we can be admitted to a Korean ER. Right. Now.” James stared listlessly over my shoulder, unperturbed by the rising tension in the room or in me.
“Is your husband local?” the doctor asked.
“Do you consider Thailand local?” He arranged for the ambulance.
James seemed unconcerned by the bumps on the long drive to Seoul, and Grandma was equally unconcerned that there wasn’t room for me, let alone her. I could see the neon crosses of a Korean night through the windshield. Green for pharmacies. Red for churches. I imagined they were lighted checkpoints, like if green doesn’t work out, you always had red. Our destination was green.
I thought back to the drive to Grandma’s house in her tiny two-door hatchback after my mother’s car accident. I was nine, but I’d never met her before then. She was like a porcelain figurine: tiny, cold, unyielding, but strangely delicate. “I won’t sugar-coat it, Grace. She brought it on herself,” she’d said that day, staring straight ahead at the road, even though we were stopped at a red light. “Marie,” I said, not asking her what she meant. “I go by my middle name.”
Grandma didn’t acknowledge me. “Not three months after your father died. Not three months, carrying on with that man.” She tisked. “I won’t let that happen to you.” At that time, I didn’t know much about God, except that he’d taken everyone I loved from me. Over the years, I learned that they’d both deserved it for sometimes varying reasons. “I’ll keep you safe, Grace,” she’d said to the windshield the day our life together began.
Now in the ambulance, with my son on one side of me and her ghost on the other, I felt for the first time that I almost understood her. I prayed that James would be okay, that he’d smile again.
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My husband arrived at the hospital near the end of James’ 24-hour EEG. Still in uniform in the middle of Seoul, a cut on the bridge of his nose from the weight of his helmet, and exhaustion in his voice from the weight of a life he probably didn’t want, he said: “He has epilepsy, but it’s from the oxygen deprivation at birth, not his syndrome. The neurologist said he would have eventually died without treatment.”
He sat down, leaning on me. We had this moment of stillness while the techs removed the gummy substance from James’ hair that had held the electrodes. A week later, we were all on a plane to the US to begin treatment. And just like that, a prayer was answered.
III.
By the time he died next, in Kansas this time, I was more prepared. His femur snapped in half—a response to his home nurse tripping while she carried him and dropping him down the stairs when he was four years old. He never walked again. As I held him at the bottom of the stairs waiting for the ambulance, I thought of the inevitability of this moment for a child who cannot walk on his own, and I asked Grandma: “What do you think now?”
“That’s why it’s called faith,” she said, quietly.
On this ambulance ride, I thought of him the day before, walking around the block self-propelling his gait trainer for maybe only the third or fourth time. He smiled contagiously to our neighbors, his head nodding to the side with the song I played on my phone. “The ants go marching one by one, hurrah, hurrah.” Yesterday. We were so proud of him, laughing and clapping and cheering him on.
James gripped my hand and stared into my eyes the whole ride to the hospital, shaking. In shock, they said. Grandma silently stared out the back window. I suppose there was nothing left to say.
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My husband met us at the hospital in Kansas, like our lives were on a never-ending loop. Everything the same, regardless of the country: endless corridors, glaring lights, the smell of old food and antibacterial cleaners. I slid from his arms to the ground, finally letting go. “Why is this his life? What else can I do?”
“Marie, look at me,” he said. “No matter how much you wish or pray, he will not suddenly have the correct number of chromosomes, his brain won’t be undamaged, his femur won’t be unbroken. The only thing we can do is get him the best medical treatment we can.”
He was shockingly calm, and I realized he knew something I didn’t. When had this happened? “I feel like he’s slipping away.” I was still crying. “I want to keep him; I won’t let him go.”
“I know. I know. I do, too.” He seemed cruelly in control of the situation.
“Then what difference does it make if I try?” I begged. “Why can’t I try?”
We sat down on a bench outside the OR. “Here’s the difference. By refusing to admit that it is beyond us, you are missing the chance to savor every second with him.”
“At least I’m doing something! Not just sitting around waiting for the next catastrophe.”
He got up. “I’m going to check in with the nurse,” he said.
I grabbed his arm. “What if you’re wrong?”
“Then, he will go to heaven and live forever. But either way, he will live forever in us. And whether he lives 30 years or 10, I want to be there for it. I want to be grateful for those moments without worrying about the ones that follow.”
“But what if it’s my fault?” I whispered, leaning into him.
He said, “Why wouldn’t it be my fault? If this syndrome—that could happen to anyone—happened to someone else, would you think it was the mother’s fault?”
As he walked away, I felt a little stronger and turned to see what Grandma thought of that, but I realized she hadn’t gotten out of the ambulance.
IV.
James Edward left the world in spring of Ewing sarcoma that developed at the fracture point in his femur, surrounded by life in the jungle of our living room, overgrown with palms and orchids. He was eight years old. My husband held him, and I lay beside him on the mattress we’d moved down there, my cheek on his, the warmth of his skin seeping into mine. The scars on our bodies together told the story of his life—his birth, surgeries, feeding tube—like a treasure map to happiness.
Until the last week or so, he could still scoot around the house, and the floor height meant that he could leave the bed at will. His toys and books and wheelchair surrounded the mattress island like a halo. I’d never imagined cancer, bone or otherwise, to be peaceful, but there he was calmly watching us, holding my hand, the other on our white cat, purring happily. Until he just wasn’t watching anymore, and the kaleidoscopic landscape of our living room was inside him, instead of without.
“We got this one right,” I whispered to my husband. “This is a good death.”
He held us both so tightly and shook his head and whispered back, “Life.”
I watched the blue jays chase each other from maples to the white flowers of the just-blossoming dogwoods and my son’s perfect face framed by my husband’s arms. I slowly nodded. Neither of us cried. We were past that now. I remember thinking on the flight back to the States that this moment was unavoidable; he’d been dying since the moment he was born, losing parts of himself along the way. I almost laughed at myself now. All the time wasted trying to fix what wasn’t broken about him, thinking he’d lost things that he’d never had to lose.
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It rained during his funeral, and I thought back to when Grandma passed. I was eighteen. It rained then, too, and I couldn’t believe we were going to leave her out there alone in a building storm, the way I would later leave baby James in a NICU plastic box. I tried to stay with her, but someone pulled me to a car to go to the reception. And Grandma just stayed there in the cold. I hadn’t seen her ghost in probably four years, and I suddenly felt grateful that she’d been there with me when I needed her, doing the best she could.
“We had him as if we were going to lose him; we have lost him as if we have him still,” my husband said as we stood on the damp earth, paraphrasing Seneca, James’ small casket at our feet. The rain didn’t scare me now. It made me feel like he was returning to something bigger than us. And I do have him still. The colors in my memories of my son are iridescent, vivid and moving, transforming me. So, our family didn’t really end with his name.
V.
I lied about something, well, a few things really. I did cry when he died. And, honestly, I couldn’t care less about his name. I just want him, and I want that part of me that he took with him. When you’re born to be someone’s mom, what becomes of you when he dies? What use is half a treasure map? Seneca and Jesus don’t have all the answers. Maybe because they aren’t mothers. After all, Mama was the only word James ever knew. But I didn’t lie about the colors. I still have those; the perspective his eight years gave me cannot be taken back.
Photo by 🇸🇮 Janko Ferlič on Unsplash
