Every morning I wake up thinking about when I will hold you, and every night I fall asleep thinking about when I will hold you. I spend as much of my day as I can holding you, but it never seems to make up for the time I have to spend away from you. I think sometimes that I might take time off and do something else for a half-day or day, maybe errands or chores or work or a hobby, but I can’t. I just want to hold you, feel your tiny breaths and watch your oxygen levels go up as you rest on my chest, the only sign that maybe you know me. It has been 79 days in the NICU, 79 days of waiting for you to be mine.
When my body couldn’t hold you in, I had to surrender you to strangers, to tubes and wires and a plastic box. They wouldn’t let me hold you or even touch your skin those first few days. And as I stood there watching you, I wasn’t sure I even wanted to. I only felt fear and confusion. The elation I felt when they told me that I had a son, and he was alive and doing well was gone. You did not look well. You were small and fragile, and I didn’t think you could survive. I wanted to be put into a coma so I didn’t have to endure the grief. I wanted to wake up when you were ready to come home, when they had made you into a regular baby. We’d leave the hospital as I had imagined: healthy, normal, perhaps even radiant. Instead I left the hospital empty. They wheeled me out to the hospital curb and left me there, but they kept you. It didn’t make sense to leave you behind. Everything felt empty: my womb, my arms. I had a child, but he wasn’t mine.
I went to see you. The drive was long; the halls were long. It was still difficult to walk, and there were so many doors and checkpoints between you and me. But I went, and I told them, “I’m here to see my son”, a line that I had to rehearse. It was technically right, but it didn’t feel right. It was stubbornness or a sense of duty bringing me those first few days. You were a stranger born from my body. I had kept distance between us as I carried you through a difficult pregnancy that didn’t even make it to the third trimester. Now the pregnancy was over, and I was only a vessel for grief. I didn’t know how to close the distance. I was the outsider in your room. They knew you better than I did, for they had held you, touched you. I asked myself, “Should I even be here? Where do I fit?” At first, all I could do was stare at you in a box. Then they let me take your temperature, and I finally got to touch you. When the time came, I dutifully held you after they put you and all your tubes and wires in my arms. I had to remain still, no rocking, no stroking your tissue paper skin; all of those physical instincts a mother has around a baby had to be checked. I relax and then panic. How do you love someone you might lose? Nobody explained how this all works, how you survive. They just told me to hold you. So I do. Everyday, I am the visitor who comes to hold you.
Before my discharge, the NICU nurse asked if I had questions. I ask if I’d get updates, if they’d call me about procedures or test results, to get my input. “We only call if it is time to say goodbye.” It turned out not to be true, but the response ended my questions. Their job is to care for you, not me; a care that felt like it had nothing to do with me. I do not make decisions for you; I am a spectator. But I don’t want to miss the opportunity to say goodbye, so every call leads to panic, and everytime I leave, I force myself to say goodbye. This was supposed to be the beginning, so why does everyday have to feel like it could be the end? I should have asked the nurse how many times we’d have to say goodbye.
Today will be 79.
I leave the hospital knowing it will be 16+ hours before I see you again, and I just have to tell myself, “Make it to the car and then you can cry”. I go home and go through the routines of a normal life, living as if you don’t exist. There is no nursery, no diapers, no sign that I have a new baby. You came too soon. And yet my body knows you exist, though it never acknowledged that you came too soon. The milk, like the grief, has always come streaming out of me uncontrollably. I am woken multiple times a night, not by the stirrings of a hungry newborn, but by the fullness in my breasts. I get up and can’t help thinking of the mothers currently rocking their babies to sleep. I cry as I pump; you don’t even need all of this. I feel like nothing, and yet I feel like too much.
I have had to try to learn to contain my grief, to weep out of sight. I see the confusion on people’s faces when they see me and don’t yet know. Some say nothing, and in my weariness of this journey, I am thankful. In the beginning, I was a hurricane of despair, flooding every conversation with my sadness. Your birth was confusing to me, I couldn’t celebrate, but it felt wrong to publicly grieve. Did I want congratulations or lamentations? Neither felt like the answer. And often, when people did reach out, they seemed to want us to be an inspiration, a crepuscular ray. But I tire of reassuring them it is all okay when I’m still trying to reassure myself. I say more rehearsed lines. “Yes, yes, I know, so much to be thankful for.” But what I feel is the emptiness in my arms and belly, a longing for something I can’t yet have. I should still be carrying you; you should be connected to me, not monitors and oxygen and feeding pumps. “Yes, yes, it could have been worse. I’m thankful it wasn’t worse.” But it could have been better for you, and I wanted better.
To hide the grief, I pretend we are reenacting a story about something happening to someone else. They refer to me as “the mother”, and I catch myself referring to you as “the baby”. I write down the medical terms, the weights, the feedings, and relay the information without emotion. What the role of “mother” entails is different here. Around the staff, I’m an extra, a background character. My stage direction is to hold you during my slotted time. I am stoic, and I follow the rules to be allowed here, only doing the tasks that I am permitted to do. They have a schedule, and I have to ask to feed you, to change you, to hold you. I try not to seem desperate for every interaction, to not seem emotional when I miss the opportunity to change your diaper. You are always monitored, and if someone is not in the room with us, they are outside the door. There are fleeting moments as I hold you when we feel peaceful and alone, when you start to feel like mine.
But the alarm will inevitably sound. I didn’t hold still, I knocked a tube, I didn’t get you to burp. The alarm reminds me that I can’t do this myself. It reminds me of my place here, confined to these hours and these specific tasks. Logically, I’m thankful. These people are saving your life, teaching me a different way to parent. But in those moments, I feel jealousy and defeat. They don’t need permission to hold you; they are confident in their role. I am lost in mine. But I keep showing up, hoping that one day we can disappear from here. I’m nodded in past the line of other visitors at the hospital. They know me here. You’ve been here the longest of all the current babies. And yet you are still smaller than most. The newer parents ask how long we’ve been here. Their babies will only be here in the NICU a few days. I know this because otherwise they would have learned not to ask. They all come and go. We remain, and I feel envious every time I see a carseat carried into the hall. It’s been 79 days, how much longer will you be here? All you know is this room. I put up pictures and signs, but I don’t want you to think this is home, because I am just a visit or here. When will you feel like mine? Is it days, weeks, months? I am hopeful it will be soon, but they are too cautious to say. So I just have to sit and hold you while everything else is on hold.
You getting bigger, stronger, losing a tube or wire; it’s what has kept me from becoming numb. My stubbornness remains, and I pray that I’ve passed it on to you. In the quiet and stillness of holding you, of watching the blood draws, the spinal taps, the scans, the intubations and tube placements, the pump feeds, the bagging, the endless exams; my love has grown fierce. They have taught me to parent by being present, by celebrating the ounces even when I know you need pounds. You now know me, my scent, my breathing, my voice. They assure me of this fact. We will not be strangers when we leave here. I will have fought harder than I have ever fought to love someone. I will let go of the jealousy and of the guilt. I know I will miss having so many people care for you, so many people celebrating every small accomplishment. But you will have many more accomplishments. This will be your beginning, a small fraction of your life; it won’t be your end. It will still be many months before you ask to be held, before you call me mama, and I long for those days. Then one day, I again won’t be able to contain you; you won’t want to be held, and leaving you (at daycare, school, friends’ homes) will feel normal. You won’t remember any of this experience, but I will hold on to it for you, so you can be that inspiration, if only to me. But for now, I will just hold you.
Your story matters. Thank you for sharing your story Bonnie. We are forever grateful!