In the middle of a documentary on normalizing, HUMANIZING death… I was seeing the footage of the NICU and watching moms cling to the lives of their little babies. It set me into a torrent of tears. The flooding of memories from the day I rushed to the hospital with my baby. We were swiftly flung into the NICU, she 5 days old.
16 years ago…
The pit inside my stomach swelled outward. I feared I had no room for it, that it would be felt or was visible by others, somehow.
The smell was yellow; it bit into my nostrils like acid. I had to hold my breath in bursts to acclimate to the new odor of the wing. I had to rush to keep up with the nurse who held the keys to my child’s warming area. As the nurse stepped to the side my stomach dropped.
I saw my child, her arms and legs exposed, diaper-less, wires snapped to her like she was a tiny, pitiful doll. I wept so terribly low, I feared every single second that this was our last moment. I was ready to cut and run, if she died right there. I wasn’t ready for this. She was just my child an hour ago, now she was hooked up to red lights on a metal table, writhing in agony with no one comforting her.
I felt the withdrawal my husband had. He withdrew from our child when he saw her laying there so vulnerable, so little, suffering so deeply.
I looked at his face, his entire body stepped backwards. He was terrified. I had to be the strong one, again. This time he took death seriously; last time with our first child in surgery he was nonplussed and shamed me for over-reacting. This time I knew it was really, really serious and I was going to have to go it alone, again. He’d be there for the children we’d already had. He told me he had to go. He went back to our house; my mother was waiting there to help him pack things for my stay. I was still wearing a maternity shirt that had stains on it. I hadn’t showered. I stood there looking at our sick child, scared of her future or lack of one. I felt angry at him for having the option to walk away. Had he just accepted her death? I hated him a little more for the torments he’d placed in my arms. I seemed to always carry the bigger burdens; since I was a child, even.
I fearfully reached out to touch her, then drew back. “Will I hurt her?” She was so delicate. So small. So weak. So fragile and needy. She wouldn’t open her eyes. Her mouth opened and a screech flowed out, pitifully. I, again pulled back on the reins. My soul didn’t want to attach to someone who’d be gone soon. I didn’t want to hurt like that. I wanted to run. To fly, to cry so loudly, to scream. But I couldn’t; she needed me. And, someone one would hear. Someone would feel my pain. Someone would know the anguish inside. Someone would rush to see what’s wrong, and there’d be just us… like everyone else in there who was aching through recovery, hope, loss… it was the flavor of the room! Such aching hope, it waffled through the air; I could feel the others in the room… they, too knew what I was feeling, but they were in their own worlds, suffering with their own loved ones…
I was allowed to hold her, but I feared her. I feared ruining her. What if it was all my fault she was sick? What if she was sick and would die because we took her into Walmart? She was far too young! What were we thinking? I should have insisted. Dave should have listened to me. Shy did he insist I go in with him to gather necessities? Why did I let him push me around? Why did I marry such an idiot, now our child would die, maybe…
I looked down into her small face. She was weakly nursing, my loving arms squeezed her softly; a small comfort amidst such roiling pain. I didn’t know, but I sure as hell didn’t feel comforted, I was scared as hell.
I pulled the blanket off her toes. I looked at her tiny feet, those little perfect hands that I stared at lovingly each day since her arrival. I didn’t want life to leave her body. I didn’t want her to suffer, either.
The worry of never bringing here home again flooded in with such severity, I lost my breath. She continued weakly nursing. Was she even getting any milk? She was hardly sucking, my breasts were aching with the amount of milk I was creating for her. She choked on it as it flooded her tiny mouth. Fat tears had landed on her bare chest; I had soiled her. Was I hurting her? She was screaming again. I had to call for a nurse. They told me she was going to need supplements; to nurse is best but to pump would be even better. I was scared of her. I wanted to hold her, but I wanted to also be alone to cry as hard as I could. I didn’t get to, though. I told myself to hold it in. Later I could feel it, maybe. Maybe I would find a minute to feel this, but not now.
They sent me into a long room with divider curtains and chairs. They told me this was the dialysis room, someone may enter, don’t worry, you’re private though. They set a pump on a table beside a reclining, yellow chair. Everything was yellowed, why? It all had a stain to it, orangish yellow. They told me to rest. Drink lots of fluids, keep coming to see baby, keep holding baby skin to skin: that was best.
My back was tight, I couldn’t relax. I had a drawn look to me. I lost my appetite. I was engulfed in fear. Fight or flight? That was ages ago, I was in Shutdown. Survival knew its way around my body, and my body understood it better than any other mode.
Dave brought the kids to the room that the hospital lent me; a bedroom with a shower, close to the NICU. All four of them were sprawling out on the floor. I had no where I could feel alone and be free to feel. I feared being alone, I’d lose myself in my grief. I’d been raised to hide feelings, most especially negative ones. I couldn’t cry out in front of anyone, they’d know, they’d hurt me, maybe. I didn’t even let out a sound while birthing her nor her seven siblings. I didn’t want to be a burden to anyone. My Christian parents had made sure that was our way. I was the epitome of hiding the self to protect the self; my mother had taught me that to show feelings of fear, anger, anxiety or anger resulted in negative outcomes. I didn’t dare make a sound.
I tried to take a walk outside. It was gorgeous out; sunny and summer time. I wished we were all at the beach or out in the backyard, the kids swirling in circles in our pool as I nursed our newborn in the shade in the hammock.
Instead, my kids were huddled in a dark room in a hospital watching SpongeBob and the Misadventures of Flapjack with their immature father. Our most youngest was splayed out on a warming table like an order of fries under the heat lamps when I worked at Mike’s Kitchen. I couldn’t pull my feelings together. I walked forwards, I should be with her, I thought. I kept looking ahead of me and at my feet… I always stared down, I was always finding things other’s dropped because of that.
I saw a bar, not 10 feet from our hospital. It looked like a seedy one. Someone staggered out the door and lit up a cigarette. They looked at me with the smoker’s wince. I turned my eyes away. What would it be like to be that person? To not have to be enduring this. To be free from this life I’ve bound myself in. I felt like crying but there was no place to do it. None. I wasn’t safe in the hospital’s sanctuary, I believed that place was for religious nuts, not me. I wasn’t safe at the room the hospital provided me, too crowded, the kids will grow too concerned, it was best to let them enjoy this time as if it’s a treat. They’re watching cartoons. They’re eating junk food. This is nirvana for them. Let them be children.
I made it around the hospital and up two more blocks. This was the area of the city that began to grow more dangerous. There were a lot of calls on the scanner to this very place I stood before. The sign said it was a grocer. I opened the door and entered.
The light was low, fluorescents buzzed above me, some flickered in the back of the store. A man stood behind the counter, choosing to ignore me. The few customers milling about chatted amongst themselves. I walked around, browsing the food choices. It was convenience store garbage. I’d never shit if I ate like this. White flour, carbs, sugars, refined and processed. Why was this place here, anyway? This should be called an inconvenient store, I thought.
I bought a soda and a bag of Sunchips. I threw a red apple on top, right at the end. The cashier rang me up and nodded a goodbye. I could see he was native American. I told him thank you. Have a nice day, sir.
He grunted. The bell on the door jangled this time when I opened it. Did it do that when I entered? I wasn’t able to recall.
The air outside smelled like the city and the great lake beside it. The wind was warm. The city was perched on a steep hill, I was looking downhill at Main Street and beyond to the vast Lake Superior. The sunlight was bouncing off the waves like diamonds. I had no sunglasses, no towel… It was a long hike back up the hill. I decided not to head down and instead aimed my eyes and body back towards the hospital entrance, blocks away.
I was wearing maternity clothes, still. I’d asked my mother to pick out a shirt and pants out of my dresser, but she dove into the pile of maternities I’d stacked on the bed. The shirt looked like a dress. I tried tucking it into my capris. I felt like a blob. I didn’t feel like I deserved to be there. I felt foreign. I wanted to smoke a cigarette to feel a glimpse of freedom. I shamed myself for feeling that way and then shamed myself for being away so long. I picked up my feet and drove myself directly back to the hospital by foot. I was exhausted. I’d just birthed a child less than a week ago. I was feeling really poorly, my soul felt drained and my eyebrows were vertical slants.
I went on like this, in this dazed, mechanical fashion, hoping my child would make it, fearing she wouldn’t. She’d caught a virus, that was all they could guess. She was squirming and crying in agony each time I arrived to be with her. Was she always in pain? I wept when I held her, silently. I couldn’t let anyone see. I had to appear strong. I couldn’t show weakness. I shouldn’t show weakness. And I never asked myself why? Why couldn’t I cry for my child loudly, why couldn’t I let everyone know my suffering if it needed to be? Why did I hold all my anguish in? To protect others. To keep them from feeling my pain. Why did that matter? Why did I have to retain all that agony inside and keep a brave face? The doctors and nurses probably recognized my behavior was shock because they were so kind, so helpful, so understanding.
On the second day a nurse put her arms around me and my whole body shook with jags of crying into this stranger’s arms. I felt like such a fool after she released her embrace. I wasn’t allowed feelings. I wasn’t allowed to feel. I thought that if I let my feelings out, I’d lose myself, and somehow I’d also lose everything.
Later, another nurse approached without fear. She boldly strode up to me and said, “You wanna hold her? She’s yours, you can hold her whenever you want, you know?” I said, “I can?” surprised. She scooped my baby up off that radiant metal slab, wires and all and started to shove my child’s chest to mine. Alarms went off and she shut them down, making sure everything was ok, first. When my hands had enveloped my child, this nurse began to unbutton my blouse. She said matter-of-factly, “it’s best skin to skin. They heal faster when we hold them.” I felt numb inside. Who was this woman? Who cared, I wanted my baby to be healthy again. I opened my shirt at the bottom and sat in the chair beside her metal bed. I could feel my baby’s tiny bones, her chubby tummy, her heart within, beating inside her little body. A perfect little girl; so needy, hurting so badly.
Just a week ago she and I were together, but differently. She and I had been in the same body. The cord had been cut. We were now separate beings. She was so needy of me. I, so needy to heal her. This pushy, yet effective nurse wrapped us both in warmed blankets with bunnies, ducks, and bears on them. Then she draped one last blanket with pink and teal stripes on one end over us, tucking in the edges. We were so warm. So comfortable. So cared for. I smiled up at the nurse with tears in my eyes. She nodded approvingly.
She said, “Rest. Sit with her. Be with her. Hold her close. She needs to feel you close.” She then strolled away to assist another mother.
I could smell my baby’s head, her soft blonde hairs were tickling my nose. I breathed in her divine perfection, wishing this could last forever. Finally someone not sterilizing the issue, someone knowing what I needed, what my baby needed. I let loose with a sob that cut through the room. I inhaled quickly, hoping no one heard. My eyes were averted, yet somehow scanned the room for gawkers. None spoke, and my sobs bubbled out of me one after the next. I wanted her alive. I wanted her home. I wanted to hold her in the sunshine on our porch and laugh with her sisters and brother. I wanted to see her grow, to watch her progress, to be with her as she grew and became a woman. I loved her so much. I was so afraid of losing her. I thought if I lost her, I’d lose a part of myself so large I’d not survive it. I feared that I couldn’t love any baby, let alone this baby, enough.
I feared my failure. I feared the fragility of life. I feared death so deeply, it had been ingrained into me.
The loss of my dogs, kittens; the visual death of the cat I witnessed, shaken to death; my own bird whom I could have prevented from starving to death; the sounds he made as he let loose his dying breath; the rabbit I thought I rescued, it screamed until it died in a cardboard box in my living room. Losing my father in essence, I never got to see him again after age 7. The cat Dave steered to miss but hit square on. My grandmothers. My high school friend Steve; he had no casket, no urn, just a memorial with photos. My sister in law, crushed by a speeding dump truck; there were songs and stories shared about her around a tiny urn holding her ashes. How was that tiny thing Jackie? My experiences with death were negative, the pain deep. The ones involving people were made invisible and were scrubbed clean so as not to traumatize. But the invisibility of death is traumatizing!
My great grandmother’s death had been traumatic for my mother. Perhaps that’s why she dragged us into a cult, afterward. My mom would come home from the hospice crying miserably. I’d hear her tell stories of grandma crying out loud, shouting, “Jesus, come save me! I’m a miserable wretch! Please, help! Help me, Jesus!” I’d never want to embarrass myself like she had. I’d never want people to cry over me. I didn’t want my death, nor any of my actions to cause others to turn head and oogle, gossiping later on.
I feared death because death was foreign. Society had made death sterile; pushed under a rug, buried six feet deep in a pristine box or placed in an urn or slid into a mausoleum. Neat and tidy.
But this wasn’t neat and tidy! Nor were the other babies surrounding us. Some mothers had it far worse than me. They’d been there for months! They’d watched their little ones from windows in ventilation boxes, holding a mere hand or foot. They’d been thru countless last moments, surprised they were wrong. They’d had so many close calls, so many near losses, so many failures to deal with. I shamed myself again. I had no right to be so upset, my child just had a virus. But what if my child infected other children? They were side by side in that NICU. I had so much self-damnation going on, so much determination to be the least deserving to be there…
But not my child. She was paramount. She needed the best care we could get. I stayed in the NICU often, but the concern I was overwhelmed with would drive me away. I knew it was best to be with my baby, that these were important moments of her growth, and mine –but the agony of staying was crushing me. I would leave, only to return, only to leave again. It was constant movement; I could not sit still.
With my surviving children I felt withdrawn. I had to acknowledge their fears for me, for the baby. They had so many concerns of their own; “Would the baby be able to come home today? This place is so boring. Can we go home?” I wished they could, but my husband had been inappropriate with our first born child, I couldn’t dare leave him home alone with them. It was hard enough leaving him with them while I was in the NICU. I’d had my mother hawk eye him (her not knowing why), telling her I needed more assistance. She begrudgingly did what little she could to get by with an okay by me. She did as little as she could. I was trapped in my own hell and I didn’t know how to get out.
Now I know that I could have snatched up all the children and told my husband to fuck off, along with my mom, but then? I was so weak. I’d been abused for so long, I didn’t recognize abuse for what it is. I thought it was normal. I thought I just had to bear with others, tolerate, and endure until Jesus saved me from the hell I was trapped in. I wished Jesus would fly down and save me and my baby from the trap I was in. Why didn’t he ever come? What was he waiting for? Could the world be worse now than ever? Hadn’t it been long enough?
I wished, prayed, and prayed some more over my baby.
After 3 uncertain days she began to improve. She was nursing more aggressively, too. I could hear her gulping, she wasn’t choking and vomiting any longer. Her diapers weren’t soiled for longer stretches, she was improving and the doctors and nurses looked hopeful. I clung to her when I appeared –but appearing was so difficult for me. The staff didn’t pressure me, it was up to me to appear or not, but I knew for certain that if I didn’t appear I’d be the talk of the floor, like the other mothers who couldn’t show up for their ill children. Appearance was everything. Truth was; I was terrified of my own child because she held the balance of life and death; she understood true suffering as I did. She was only a week old and she held the keys to my heart.
The day we drove her home was sunny. I couldn’t stop looking back at her car seat, asking the kids surrounding her in their own car seats, “How is she doing?”
“She’s good, mom. Look, she’s so pretty!”
How we loved her. When we came home the first thing I did was plop onto the couch on our porch in the sunlight. It was afternoon, she needed a change first.
I lay her on the sunny blanket, looking into her blue eyes. She was perfect. She was alive. She was healthy, too. She would be okay, I thought. She would survive and she would flourish. She would grow and become a young woman and we would love each other. I felt happy and after I fastened the final button on her little jammies I pulled her up into my arms and held her close, rocking and smiling, tears pouring nonstop down my cheeks. She was home again. We could finally rest. We could finally stop moving, stop letting Dave tell me what to do, I’m staying put. My baby needs my continued care and no man and his damn needs were going to divert that. She needed me and I was going to give her what she needed.
Sixteen years later she is so tall. She is beautiful, but that isn’t a surprise, she’s always been. She holds herself proud, she’s endured bullying and knows how much pain it causes. She’s bright. She understands how to speak calmly and with purpose. She raised a cat with all the love and affection one needs and now he’s a fantastic piece of evidence that if you give a young one everything they need while they’re young, they’ll be fully functional and capable, dependent on none when they’re grown.
This is a lesson I’ve only now learned.
I was often pulled away from my children, laying them in the swing to sleep, not cuddling long enough, not regulating their heartbeat and emotions. I’d taken on too many responsibilities. I overloaded. I thought god would help me, I depended on it and it never came. I slowly came to realize I was going to have to save myself, no one else could.
She’s shown me a lot. We’ve been through a lot.
When she was 10 I told her father to leave. She didn’t know why, but she stood by my side, supporting me. She loved me to my core. I didn’t even see that though, I was hurting far too much to notice. I tried to find another man to take her father’s place but only found more toxicity. I hadn’t been programmed to recognize toxic behaviors, they were familiar to me.
With her approval, which she gave out of trust, not of understanding, I accepted a toxic man into our home, like my own mother had, in hopes for a father figure for my kids. With her sight she could see he was horrible and within the first week of him living with us she scratched and gouged his prized possession. It was a personal attack and no one was admitting who did it. Everyone pointed fingers at the littlest one, who adamantly refused ownership of such actions.
This child of mine stood up boldly and admitted her doing and still, I could not accept it. I thought she would have fessed up immediately, not later on. I truly thought she was taking the fall for someone. She pretended so well that she accepted and even liked my male companion. Within 8 months he’d shoved me several times harder than the last, and eventually choked and held me down. She knew. I didn’t. But, she knew it was a toxic relationship…
I am learning to lean more on her understandings. She is a person with insight into the things I cannot see. She is aware of the things I overlook, things I deny.
In 2017 she was hospitalized again. She was 13 years old. We entered the very same hospital she’d been placed in as a baby… the very same room we went into when she was soiling her diapers every hour and had a low grade fever. The. Very. Same. Room. Doctors came in and out, a police officer was stationed outside the door. She was suicidal. Homicidal. She’d had simply enough. Our home was chaos and her mother was in denial. Everything about her reality didn’t fit with the one that was mine. Mine was one of denial. Mine was one of toleration, of endurance to the very end; of mere survival.
For the past 3 years I’ve been worrying over her, too. Thinking I messed her up –which in turn made her feel like she was messed up –when she was the one who was healthy, not me! She put up with my frantic attacks of fear for her future long enough. She reached out to her therapist and told the stories of our lives, she opened her mind up to accept what may come, she became vulnerable and willing when I was too afraid to. She saw the possibilities in letting go and simply let go. She is an amazing person. She also has ADHD
She wanted more from life, though. Who wouldn’t?
While looking through the paperwork she’d been sent home with from her therapy sessions my eyes fell on a line that stopped me cold:
“To keep an agitated person from becoming more aggressive speak calmly, do not aggravate the situation. Say your feelings and state your wishes, do not interact with name calling nor judgement.”
Was I the agitated person? Was I her antagonist?
It’s taken me 2 more years to realize yes, I am. Like my mother did with me, I have been hounding her through her early teen years, dumping my fears for her and her future on her like it was supposed to be the way, but it’s not! I was sharing with her my adult fears, and she just wanted to be a child. She just wanted to laugh, to live, to grow, to shine, to see, to seek, and to discover. I piled so much worry on her she couldn’t and for that, she grew up far too fast.
Here I am, in my late forties and she’s in her mid-teens. She’s taught me more than I ever knew I could understand, she’s given me a point of view I’d not considered. She’s opened my eyes to my parenting ways and helped me shave off the bullshit ways my mother tried out on me. I am still awakening to the power of awareness. I’m still making mistakes, I’m not perfect. I wish I was. Do I, though? With all these lessons behind me, I don’t want to shame me anymore. Look how much she helped me learn. Look how much I’ve grown because of her, and to give credit –because of me, too. I’m also doing the hard work and I am proud of it.
She has helped me see myself in a different light; one where I’m not perfect like I like to imagine. One where she’s the center of the universe, one where we are the center of the universe and we can make our universe what ever we want. I had lost sight of opportunity, but with therapy and growing closer to my children, I remember how much there is out there for us.
I am thankful for her.
I am grateful she was strong enough to pull through life to this place.
I look forward to seeing what she does now that I’ve stopped being her antagonist. The sky’s the limit.
Upon reflection:
In watching this documentary, I see that death has become an invisible sliver of life, where in reality it’s a large chunk that we all fear, greatly. Knowing death is coming takes joy from many, the fear engulfs us and leads us to extreme measures; joining religions and beliefs so we can come to terms with it, and treating others in ways we wouldn’t ever wanted to be treated. Yet all the while we keep sterilizing it for our young. At some point in life we need to grasp this stage of life, accept it, and somehow make it something to NOT dread, but embrace.
We need to Humanize death.
I feel lead to become a death doula in the future, post-covid19, perhaps this shutdown is the time for my preparations.
I may be facing the loss of my grandfather soon, and even my own mother whom I’m disconnected from… and with that possibility I know I’m going to need to be strong and accept it for what it is.
Death was life, life has death. Its time we make it possible for everyone to have a death worthy of acceptance. Death shouldn’t be final, it should be the sending off of a spirit. The arrival of a new beginning. A lift-off into infinity.
I believe that the fear we’ve allowed ourselves to get overcome by causes the spirit to fear death and also keeps the spirit here when it needs to be soaring off into a new life, of sorts. The mourning and lamenting we make over our lost ones –the very words “lost” and “gone” evoke negativity!
It’s time to come to understanding. Death does not mean final. Death does not mean the end. We know nothing of the loving, excited, awaiting arms at the end of the rainbow.
The fear of the unknown is folly.