Genetic > Johnny
John 1: 5 -9, 15
We got the call at eight a.m.
We had dared to take everyone's
advice and go home to sleep.
Now, after two weeks of
telephone phobia, it was
finally the call we never
really believed we'd get.
It was my mother, or what
was left of my mother.
It was a puddle of a voice,
lost between sobs.
The sobs won. Another voice came on the line. It's the doctor--the one who never looked directly at me when he was talking. I could never tell if he wouldn't look at me because he thought medicine was men's stuff, or too complicated for me, or because he was worried I would break down if he did. Sometimes, I felt as if he was afraid to look at me, as if he was physically trying to shield me from any extra weight his eyes might lay on me. They were heavy and tired, and they never had any good news. To him, I must have looked like the last living leaf on a dying plant. Hanging on, but barely. He didn't want to be the one to finally blow me over.
The doctor tried to sound reassuring. What I remember most about him now is his voice. It was so gravelly, like it was in constant need of being cleared. Later, we found out his son sings in a band that plays on the radio. Sometimes now I'll be flipping stations and hear him. I stop and listen, and I hear that same voice. It brings me back. Except on his son it sounds cool and tortured and rock star. On the doctor, it just sounded like a death sentence. Before all this, I hated that band, I thought they were whiny and shallow. Now, I feel connected to them. I love imagining the doctor proudly gravelling on about his son, imagining them fighting when he was a teenager. I'm obsessed with the fact that in some tiny way I can know the doctor's son, and I wonder how much he remembers about mine.
"He's pulled his respirator tube out. I really think he's trying to tell us something. I don't want to do any chest compressions. I don't want to give him any adrenaline. Do you understand what I'm saying?"
Every cell in my body understood what the doctor with the gravelly voice was saying. I had understood it since last night, since I had given up, since I had actually said I wish it would just be over. I cursed myself now for those words. I felt sick. I understood. The doctor was going on and on about something, something about not rushing, not driving too fast. I didn't hear it. Somehow we made it to the hospital. I remember shouting, sobbing, leaving the car on the street because there was no parking. Now when I drive those streets, they're so crowded. I think, did I just mow people down? How on earth was there no traffic that day?
We ran down the hall we had walked down so often in the past 12 days. That damn hall with that damn hospital smell. The smell that made me too sick to hold my own baby when I came up in a wheelchair that first day. We ran over the pastel floor tiles, and the sound was deafening. In the sickly hushed quiet of that floor, we sounded like a herd of desperate elephants. All that noise, and we still seemed miles away. We ran past a man we had seen almost every day for the past twelve days. We saw his familiar sad gait, his dark eye bags. He was coming from a visit, perhaps going back to work. Back to the real world that went on, that knew nothing of babies that look more like small birds or oxygen saturation levels or bottle upon bottle of frozen breast milk, the very definition of hope.
I knew his wife better than him. We had been tenuously hopeful together. Once I came in and found her crying in the family room. We talked about the absurdity of monthly bills and the innocent confusion of her older child. "Where's the baby in your tummy, mommy?."
The man began to register us with the same compassionate acknowledgment we'd shared so often before. It's almost a look of relief, a look of understanding. "I know," it seems to say, "'hello' is such a wasted word". The look is more like a secret handshake or something. After all, we're all part of this terrible secret club. Select members in a club no one should ever have to join.
I saw him see us run, saw him see the tears, the desperation. Our silent hello stopped there. There was an unspoken rule in the NICU: when parents are with their baby, you don't really acknowledge them. It's as if each of us knows that the seconds we have to actually hold them is too precious to waste on small talk. The same thing happened now. He knew we were already there with Johnny. He knew this was our moment alone.
When we came around the
corner, my mother was standing
there, looking smaller
and weaker than I've ever
seen her. I felt like throwing
My mother had been doing one of her early morning "vigils," as she called them, when the baby spit out his respirator. Later, she told me she'd had a premonition that he was going to die, and she wanted to spend as much time with him as she could. The rational and understanding part of me thinks now that she creates these things to feel like she has some control, to feel like somehow she's involved or can fix unfixable thins. But right then, I was well beyond understanding and rationality. I just felt territorial and annoyed -- Why would Johnny come to her in a dream when he was my child? Why would he have passed through her body instead of mine?
I looked past her and froze. For an instant, I barely recognized him. The child that I had carried with me for nine months, the most beautiful angel baby who made me weep the instant I met him, was gone. In his place, I saw a lifeless, dusky gray version of him.
Johnny was born full term
and was the biggest baby
in the Neo-Natal Intensive
Care Unit. Compared to
his tiny premature roommates
he looked like a giant
and acted like an angel.
When preemie babies cry
they sound like little
goats or creaky gates,
and it can grate on nerves
after a while. One benefit
of having a baby with severe
brain damage is he hardly
ever made a peep. When
he did, it was just these
sweet little half-sucking
noises. It made him all
the more perfect.
The nurse finished unhooking him from the monitors. The monitors that our own breath had come to depend on. The ones that sped up and slowed down so much you'd just have to look. The ones we had finally learned to live with. The ones he couldn't live without. She handed me the baby.
Holding Johnny was like an instant sauna. Over the past two weeks, my husband and I argued endlessly over who got to hold him. Finally, we settled on taking turns. Whoever's turn it was would take his or her shirt off and hold the baby, naked, except all the tubes and wires, against the chest. The loser that day would have to settle for watching or reading, fighting jealousy the whole time.
When Johnny was whisked away right after birth, I couldn't see him for three hours. During that time, I felt like they had accidentally taken my heart out in surgery instead of a baby. Every part of my body ached for him. Yet, right before I got to see him, I freaked out. What if I wouldn't recognize him? What if I wouldn't love him?
I've heard about parents with sick babies who never come to visit, who can't bear to see their children like that, who just can't let themselves love something so fragile. For us, from the minute we met him, it was always Johnny leading the way. How could we not smile around him? How could we not beam with pride and dream and have hope while holding him? We were addicted to that baby from day one. When my husband first saw the baby, he told me how every transgression he has ever made in his life, every bit of pain he'd suffered, every hardship he'd survived, all were worth it, because it led him here, to me, to this perfect being we created. And it was true. Even then, knowing what we knew, knowing exactly why we were there, our feeling of wonder and gratefullness didn't change. Even knowing that we were never going to take him home, not ever, that he would never see the perfect nursery, never say "night, night" to his cow curtains, never meet the dog or use the stroller or wear his perfect little sneakers. Even knowing all that, the minute the nurse laid him in my arms, I was filled up with him. I was content.
We walked down the hall and the nurse ushered us into a private room. We sat in that room and whispered to him. We told him he was a good boy for waiting for us. We told him how much we loved him, how we would always love him. We told him about his room and his cow curtains, and our dreams for him. And we told him it was ok, he had done his job just right.
I knew I was holding him too tight. I also knew it was too late to matter. It didn't matter anymore how I held his head, or how I supported his neck like they showed me in the Well Baby Book. I handed my husband the baby, soaked with my sweat and tears. He grabbed him, rocking back and forth, each rock too short and choppy and desperate to be soothing to anyone. I watched this man, the man I had promised happiness and health to--his heart destroyed. I watched him cry over the child he loved so much and could do nothing for. The son he was going to father as no father had done for him. He stopped rocking for a minute, his red, pleading eyes looking so confused. He put the baby's chest up to his ear, listening, desperately trying to comprehend what I already knew. I looked away.
We sat in that room a family, the three of us together, like we had always planned. We stripped his perfect little body of the last of the band aids and wire tape sticking to him. He was covered in pin pricks, so many tests, so many needles, for what? Physician frustration. He was a medical mystery, and he bore the brunt of it, never even making a cry. He was such a good boy, such a brave boy. I took off my shirt and laid his naked body on my belly. If only I could put him back, where he was safe and alive. I would go on being pregnant for a lifetime if it meant he would be healthy and happy, turning somersaults and kicking the days away inside me.
The nurse came in and asked if we would like to bathe him. She seemed so calm. I wondered if this kind of thing happened a lot. My husband tried to make some half joke about what a shitty job she had. We were insane. We were watching the life leave our baby, watching his body change, watching him leave. How could we not be?
"It's just his house," I said over and over again, trying to make sense of the stiff little legs, the porcelain white skin that used to be so bright. "It's not really him."
We bathed and dressed him in a cheap little christening gown the nurse had brought. It was their standard dead baby outfit, I guess. Even though it seemed inconceivable, of course ours wasn't the first baby to ever die. Hospitals are prepared for these things. We stared at him in his little white gown and cap and decided he looked ridiculous. We never would have dressed him like that. The whole time he was alive the only clothes he wore were a hospital T-shirt and a Raiders hat we brought him. We undressed him and wrapped him in his blanket instead. Our families had arrived, and they were coming in the room one by one to say goodbye.
It seemed like we were in that room forever. I had stopped crying a visitor or two before. There was just nothing left. I was so tired, exhausted. It must have been five or six hours since the call that morning. It was time. My husband called the nurse to take him away. As soon as she came in, I had second thoughts. I wanted to say, "We've changed our minds, can't we just keep him?" Instead, I said nothing. After all, what would we do? Keep him in an ice chest in the living room? For half a second, I could actually picture it.
We held the baby together one last time. In the moment, the nurse stood there, waiting to take him away, I spent an eternity with him. I held him to my breast and looked at him completely. I memorized his perfect face, his little hands and feet. I inhaled his smell. I had never felt anything so wholeheartedly real, so pure. The imagined lifetime of soccer games, and birthday parties and romps with the dog disappeared. The fighting over cleaned rooms, the embarrassments, the late night games of checkers they all disappeared in that moment. The three of us had our own real lifetime together, one not tainted with hopes and expectations and letdowns. It just was.
The nurse laid a small
square hospital blanket
on the bed. She placed
Johnny in the middle and
swaddled him right side
over left, left over right,
tuck bottom in. I had read
about swaddling in one
of my many baby books books
I'll have to give away
or burn now. Books that
don?t tell you things like, "Some
What do people do when they leave their dead babies? When they can't stand to be in the same room with all those concerned, caring, devastated people? We went to breakfast. We sat across from each other looking like escapees from a mental hospital. When I found the waitress talking to me, I panicked for a minute. Am I speaking English, I thought? My mouth was moving but I couldn?t imagine any other words coming out besides, "Our baby is dead." I must have really said, "Salad and a glass of wine," because that's what came. We sat there, food untouched, trying to make sense of a restaurant. Of the smiling waitress. Of the sunshine outside.
We sat across from each other, pale, half dressed, frantic puffy eyes staring back at each other and always giving the same answer. "It's over. He's dead," they said. "Our baby is dead." My eyes shifted to the hospital ID bracelet on my wrist, the one that proved we belonged to someone, that let us visit whenever we wanted. All the writing had worn off except the very clear outline of the word "Mother." I looked across at my husband pondering his own wristband, and I knew he was trying to make sense of exactly the same thing. Just what the hell did that word mean now?
A month and a half after Johnny's death, our lives started taking on the appearance of normalcy. Somehow we made it through the memorial service, through a God-awful Christmas and were now trying to make it back into the world. Family and friends showed hints of the helplessness they felt. They listened less and talked more, especially about things like acceptance and healing and moving on. They commented on how amazing we were through the whole thing, how miraculous Johnny was, how we were somehow bettered by the experience. But to me it seemed like a load of crap. Like it was just another way for people to make us feel better, to put what happened away in a tidy, neat little box so we could all go on, so we could stop hurting and they could stop hurting for us.
In truth we were frozen. It was late January but we were stuck in a never-ending December. I tried going out, getting on with life, but babies and pregnant women and curious neighbors lurked around each corner. I was terrified of running into the day-to-day people I knew while I was pregnant, back when I was human and normal and a part of their world. A world about a million light years from where I was now.
I didn?t know how to explain to them why I wasn?t pregnant anymore but still didn?t have a baby. Despite the birth/death announcement cards I had a friend leave on the neighbor's steps, there was no way to tell everyone, no way to show the world the black hole that had become my life.
The last three months of my pregnancy I had been a walking billboard. My huge belly was a public marker of impending joy. Everyone had something to say, some excitement or advice or wonder to share. It should have gone from that to getting that same kind of attention for my baby. There should have been people standing over my stroller cooing or peering into my arms congratulating me on a job well done. Instead, I had nothing to show. When I was pregnant everyone in the world could take one look at me and know what I was going through and how I got there. But now, I looked like a normal person; regular people had no idea what happened, no idea how beautiful he was, no idea how much I?d lost.
I thought it would be good to join the gym - it would keep me busy and the depression at bay. The first day I must have timed it perfectly to coincide with the prenatal water aerobic class. The locker room was boiling over with pregnant women. They stood in front of the giant mirrors, basking in their life-giving abilities; one rubbing the big belly I had grown to think of as disgusting; another one laughing, so delighted with her funny new shape, trying to tie a towel around her waist knowing full well it wouldn?t fit anymore. They made me sick. They were so naive, so outrageously blissful.
From my hidden spot in the shower I watched them like prey, their bodies rolling around, navigating like slow motion pinballs. I felt I had a secret that could destroy them. I fantasized about grabbing their cartoon bodies and shaking them, screaming at these pregnant lemmings to wake up, to watch out, to show a little modesty for God's sake before it was too late.
I dressed openly, hoping someone would see the still raw, fat, red slice across my abdomen, the result of an emergency c-section. I hoped they would wonder and ask about it. Then I could legitimately ruin their day without seeming as mean or spiteful as I felt. But in that room, full with the high-pitched buzz of hope and expectation, no one noticed my body at all. They didn?t notice the way my stomach hung loose with extra skin, the way the fat was gone, but so was the muscle, how there was nothing left for it to cling to. They didn?t notice the way my breasts were loose and saggy, back to their normal size but hanging lower and all stretched out like forgotten water balloons, left in the sun to dry and shrivel.
No one noticed the bags under my eyes from not sleeping, the new wrinkles around the edges from crying hard all the time. They saw and knew nothing of the way I physically ached for my baby still. The way my arms were sore, heavy and desperate. The way my whole being cried to hold him, to smell him, to absorb him.
Nobody knew how quickly I had lost my baby weight, how I could barely eat or take care of my body. They had no idea that I despised my body for its incompetence, that I couldn?t forgive it for getting me into this mess. They didn?t know how I never wanted to make love to my husband again, how I never wanted my body to feel good after all the pain it caused me.
In that horrible sweaty room, fighting back tears, I realized just how separate I was. Anger crept from that sense of isolation and raged at the world that dared to go on, leaving me behind with my losses. Beyond losing Johnny, I had lost my place in the world, lost the ever important gift of rose-tinted glasses. From now on, like it or not I would see God?s world raw and exposed for what it is, unfair, random, dreamless. A world where some crackhead could do drugs and end up with a seemingly healthy baby, or where abusive mothers got to have three or four kids, while we couldn?t have one.
I would never be the same, and I hated it. I hated the idea that my next child, if I ever had one, would only know this new me: the wounded me, the changed me. He or she would never know who I had been before, how I laughed and was silly and took things for granted and believed I understood a few things.
I hated that I spent Wednesday nights at a support group for people whose babies have died, instead of watching ?Survivor? and rocking a fussy baby. I hated sitting around that gross brown table, under those harsh hospital lights, with other dumbstruck couples talking about our ?losses.? The first few meetings I just sat there, looking from face to tear stained face, thinking, ?Wait, I?m in the wrong place, I?m not supposed to be here. This is for people whose babies have died. ?
Later, I came to appreciate the support group as the one place I felt almost normal. When I was there, the loneliness and isolation of my grief melted as I talked with others who were a part of the same strange world. We were like a morose cult with our own collective sense of humor, absurdity and relativism. In that room I was no longer an alien but just another unbelievably sad shared story. The group was a place I could put together the words ?dead? and baby? and not feel like a pariah unleashing a storm of unwanted sympathy. I could complain about the people who told me Johnny was in a better place now, I could rant about the nerve of a friend to become pregnant, and I would hear stories that made me feel downright lucky.
It was a place where otherwise defeated people lit up and proudly showed off photos of their babies that regular people would gasp at or turn away from. Pictures of babies with purply skeleton skin, no bigger than a hand, or bruised baby faces that haunted you with their perfection and overly still little bodies. ?Isn't she beautiful?? the parents would plead. And they were. To us they were perfect. And for two hours every other Wednesday night I actually felt I belonged somewhere.
One such Wednesday, a woman shared with us a story about a man she knew who had lost his baby at birth. She explained how everyone thought he was dealing with it so well. How months later he had gone back to work, gone back to life. And then how finally one day the man got the courage up to go into the baby?s room and start taking things apart. He took the tiny stocked-up clothes and laid them out neatly. He took apart the crib piece by piece, the changing table, broke down the unused jogging stroller and hanging mobiles. And then he went to the garage, grabbed a can of gasoline and poured it over everything. And he lit a match and stood outside and watched the whole house burn.
We all laughed the nervous laughter of black humor, when she told the story, and soon became silent as we drifted into our own sad worlds, perhaps all a little too comfortable with that image, that feeling a little too familiar. That night I lay in bed imagining the man as he went on with his life. I imagined him and his wife at a party, or with friends, acting normal, doing normal things. But inside he?s empty. Inside he?s a burnt shell of a person. The frame is still intact, he can still speak, he can still move, but it?s a front. Inside he is black and burnt and everything he knew, everything he counted on is destroyed. Images of the future, his dreams, beliefs, are all charred and unrecognizable.
I wanted to burn, too. I hated my body for what it had done. I felt as though it had betrayed me, exposing me openly as a failure. I wanted to destroy it, to burn down this body that had destroyed my beautiful boy, that was useless and painful and hollow now.
A friend had told me about a tribe in South America where the women slash their upper arms to mark when a baby has died. That way, everyone in the tribe can see how many children a woman has lost. Western society, with all its medical glory seems to have forgotten entirely that babies do still die. We don?t even have a word for it. We have ?widow? and ?orphan? but we have no word to sum up what I had become. I wanted a name for my new status. I wanted a marker of what I?d lost.
I stood in the shower, cursing my husband for not using old-fashioned razor blades, jabbing my arm over and over with the dull, slippery face of his disposable razor. It would slip off the skin, drawing scarce blood here and there in a random pattern. I watched the blood crawl and mix with the water as it rolled down my body. I liked the way it looked, the way it stung and then dulled, resulting in something like a feeling of relief.
Coming out of the shower to admire my work, I was dismayed at how small and unimpressive my cuts were. At best they would leave light scars that would fade with a tan, nothing like the bold badge of pain I?d imagined. Looking in the mirror I felt more embarrassed at my lack of cutting know-how than anything else. ?I can't even do that right,? I muttered, staring at the strange person looking back at me . In the foggy glass of the mirror I barely recognized myself. There I was, the same old body, the same features as childhood photos, the same resilient skin, but not one inch of me seemed familiar.
Later that week I went back home to Seattle to mark my 28th birthday. The trip was supposed to be the ?show the new baby off/celebrate birthday? trip. Every year I try to make it home for my birthday; I like spending it with people who have known me my whole life. This birthday was supposed to be even more special, more perfect as I showed off my crowning achievement in life. ?See everyone, look how good I did. Look how beautiful he is. Look how happy he makes you.?
The airport felt like a personal tarmac for anyone and everyone with a new baby. Toddlers used the cement-colored hallways as a takeoff runway, their short arms and legs working double time to leave ransacked parents in the dust. Babies everywhere flew up into the air, then landed, giggling and safe into the sure arms of their parents. Off again they'd go, again, squealing with delight, a flawless combination of hopes and dreams tossed perfectly into round porcelain faces. I managed to find a chair with minimal child activity. When they finally called my flight for early boarding I almost went. ?I should be boarding early,? I wanted to say. ?I should have a baby.?
Being home was miserable. No one knew what to say or do and I spent most of the time in my room, crying in secret. It was hard to be around people who cared so much. I felt awkward and alien like a bull in a china shop - my over sized, unmanageable grief was the bull; the nervous, awkward, ?let's just pretend things are OK? by family and friends was the china shop.
In an effort to escape all that, I went to visit an old friend. He wasn't someone I knew from childhood, he was someone I met while I was depressed teenager, so we already knew how to hang out and be depressed and not have it be awkward. In fact, he had been in the Bay Area Christmas Day, two weeks after Johnny died and we had enjoyed striking against the merriment of Christmas together, sitting at the local dive bar, me and him and my husband and the baby?s Godfather drinking ourselves silly with the other bah humbugs and old drunks. He listened and looked at pictures and kept his mouth shut and bought us shots of booze and never teared up or got uncomfortable. He was good at that.
He showed me around the new tattoo shop he had just opened. Years ago I had let him tattoo me in the grungy basement of a mutual friend?s house. At the time, I felt a sense of inherent remorse the minute the tattoo gun touched my skin. It was as if I instantly knew I would never be the same, that this thing was a part of me forever. I was permanently marked with an ancient Greek inscription on my backside, which for all I know, could just as easily say, ?If you can read this you're too close.?
But sitting there in his shop, I was struck by how appropriate a tattoo was. Who cared if I didn?t like how it turned out, I sure didn't care much for how my life had turned out, either. I was - marked, changed, torn, whether I liked it or not.
We sat around looking through books of art and drawing, both determined not to leave until we created the perfect symbol for my son, the perfect way to remember him. I wanted something classic. My husband and I chose the name Johnny because it was a family name, but just as much because it sounded so cool and old style. When Johnny was first in the hospital they told us he?d probably just have moderate brain damage and suffer from seizures. We got through that by pretending he would start a punk rock band. He?d be up there on stage having a seizure and all the kids would think it was so cool. It would become some new kind of dance craze. Only someone with a name like Johnny could pull that off.
I finally settled on the old Mother style tattoo heart and banner with his name on it. We added some blue angel wings around the heart, his birth date on top, and the day he died on the bottom. We topped the whole thing off with tiny yellow forget-me-nots at each edge of the banner. It was perfect.
I decided to place it right above my heart on the left side of my chest. I sat in my ratty old maternity bra, feeling the sting of the gun on my post pregnancy breast. I loved the pain the needle caused as it burned Johnny?s name into my flesh. It was nothing compared to the heartache I had felt over the past couple months; this pain was tangible, it made sense, it was finite.
Watching this man hunched over me with his medieval looking tool I got the feeling I was taking part in some kind of violent initiation ceremony; I had passed a test, gotten instruction there was no retreat from. I was admitted to my new life and identity and would finally have the scar to prove it. I imagined nursing a new baby someday, looking down at the baby and seeing the tattoo and remembering Johnny. I loved the idea that I could never forget him, or forget the pain that came with that. I loved knowing that each and every day of my life to come this new inextricable, unalterable part of me would be there, like Johnny should have been.
?Who?s Johnny?? someone asked me as my friend showed off his work around the shop. It was the first time I?d get that question and I was unprepared. Later I would come to develop a whole new language, a whole new way of talking and being in the world. One that included the story of the baby I lost shortly after birth and the person I had become after that. But it was too fresh then, my new status still too raw. All I could utter was, ?My dead baby.?
That evening I went out with friends. I purposely wore a low-cut shirt that showed off the tattoo, still bright and shiny with blood and lotion. I wanted everyone in the world to see it. I didn?t have a bouncing baby boy to show off, but at least I had a symbol, some marker of his life and my hurt. It was my equivalent of brag book and battle scar all rolled into one. More than that, it was as if the permanence behind the sunburn sting of the tattoo pulled me from the shadows where I had been hovering in disbelief and loneliness, dropped anchor for me down into the real world, and locked me back into a body I could somehow start forgiving.
About the Author
Heidi Raykeil is Columns Editor at Literary Mama. This is an excerpt from a memoir she is writing about her son's brief but miraculous life, and the meaning she has gained from it. Heidi and her husband have since gone on to have a beautiful baby girl. You can contact her at firstname.lastname@example.org
Previously published at