A Familiar Grief
*This piece was contributed by guest author & dear friend, Kaysie
The hospice nurses leave for the day and suddenly the stark reality hits—my father is dying. And soon.
As the front door closes, the responsibility shifts. Now, it’s up to my family to ensure he receives the comfort, care, and dignity he deserves…except we have no idea what we are doing. This is a first for all of us.
All we wanted was to get him out of the hospital, to grant him his final wish—to die in the comfort of the home he’s lived in for 45 years with his wife and children by his side. So, now here we are. We got what we wished for, and yet each one of us feels stuck with indecision as the weight of what’s in front of us is heavier than we ever imagined.
Bewilderment. Uncertainty. Paralyzing fear.
I have known this feeling before. Once I place it, I realize it was during a time of new beginnings, after the premature birth of my son. Now, nine years later, I’m experiencing a prolific sort of déjà vu, but this time, it’s an ending.
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After eight grueling days lying flat on my back in a sterile hospital room in the maternity ward, I am given medicine to finish the labor that started too soon. Most new moms are giddy to meet their precious baby for the first time. I am terrified.
The doctors let me know that my son is not meant to be here yet, but the risk of infection has gotten so high that I have to deliver him. There are not adequate words to describe what it feels like to be forced to birth a baby that is not ready to enter the world. I thought I had six more weeks. I thought I would waddle into my baby shower, still fourteen days away, in a dress that accentuated my bump. I thought I would have a healthy baby.
The labor is easy until it isn’t. I avoid the drugs, soldiering on and letting my body tell me what I need. When my body finally tells me I definitely need an epidural, my midwife gently informs me that it’s too late; it’s time to push. I am not ready for this. I will never be ready for this.
And then, with one final push, I see him. A baby boy with red skin and not an ounce of fat. I hear his meek cry. I had been warned I might not hear a cry at all, so I take this as a sign that he will fight. They place him on my bare chest for thirty seconds before he is whisked off to the NICU. My body trembles from the shock of a drug-free labor. Family comes to visit, and my husband and I announce to the grandparents that they have a tiny, beautiful grandson.
The gender is a surprise, and my husband cannot stop crying over the fact that he has a son. Nothing can stop the flow of tears. I, too, cry silently beside him, but mine are not tears of joy. Mine are tears of guilt. I had one job as a mother—to keep my baby safe inside my body—and I have failed miserably. No matter how many tests the doctors run, the reason for my water breaking so suddenly remains a mystery. I blame myself. I cry and cry and cry.
The days following his birth feel like a fever dream. I set an alarm every three hours throughout the night to use the hospital-grade breast pump, then walk my bag of colostrum down the long corridor in slippered feet to the NICU to bottle-feed my baby. I cuddle him until he falls asleep, place him back in his incubator and return to my hospital room, alone. I insist my husband goes to work, and even though I am surrounded by nurses and doctors and family and friends popping in and out with congratulatory gifts, I am achingly lonely. I habitually rub my stomach, forgetting it is now empty.
When I am discharged, I collapse in the hospital elevator. My husband holds me up while I heave with sobs. I am grieving, but I don’t know why. My son is very much alive; he just has to stay in the hospital to get stronger. Years later, a friend will finally break down my grief: “No mother should ever have to leave the hospital without her baby,” she will say.
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There is an actual name for the cocktail of anxiety, sadness, worry, panic, insomnia, and physical pain I have been experiencing these past two years—anticipatory grief. Waiting for the impending death of a loved one is all-consuming, but so is regular life. While my father is slowly dying of heart failure, I still have to maintain a full-time job with frequent travel, raise two young children, shuttle them to youth sports and activities, pack lunches, help with homework, squeeze in time with my husband, sleep, exercise, and socialize. I do all these things with a cloud of grief hanging above my head while I await the final storm.
I cry in my car. A lot.
Each time my phone rings, I have a physical reaction. Is he in the hospital again? Is this the call?
I did the same thing when my son was in the NICU. I had asked the nurses to call me every few hours with updates, and yet, an icy cold panic took hold each time a call came during those dark and scary days of new motherhood. I’m in a new era of dark and scary days now—I’m a seasoned mother this time, but I’m about to be fatherless.
In the months leading up to the end, my dad is in the hospital more than he is home. Due to his failing heart, his lungs have a habit of filling up with fluid, causing him to drown from the inside out. We call 911 more times than I can count as he helplessly gasps for air. It is horrifying and yet, just like anything else, when something happens frequently enough, you somehow get used to it. My dad’s medical emergencies become a normal part of my routine. Hospital visits become as benign as brushing my teeth.
During the moments I can’t physically be by his bedside, I rapid fire questions to my mom via text. Is he stable? Will they send him to the Cardiac ICU? Will they transfer him to Mount Sinai? Does he need oxygen support? Have you talked to the cardiologist? What about the pulmonologist? How’s his pulse ox? Any tachycardia? Is his sodium low? Do they suspect a stroke?
When he is admitted into the hospital the final time, I know there is nothing left to be done. Eventually the doctors tell us as much, as gently and tactfully as they can, but I already know. I can see it in the defeated demeanor of each white coat that leaves his room. I can see it in my dad, too. I have heard people say that the light leaves someone’s eyes, but I always thought it was a figure of speech. Now, I see that when someone is dying, the brightness of their eyes fades right along with their vitals. Each time I visit, my dad’s once sparkling eyes are duller, greyer, sadder.
He is still so happy to see me and smiles every time I walk into his hospital room, iced tea lemonade from Dunkin Donuts in hand. But his eyes; at the end, his eyes give him away. He is almost gone.
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Five days into my son’s NICU stay, I venture into public for the first time. When I was still pregnant and on hospital bed rest, the head of the NICU introduced himself to me and told me what to expect. My son’s lungs would be weak and he might not be able to breathe on his own. His body would not regulate its temperature, so he’d spend 90% of his day in an incubator. He predicted that he would not be discharged until my due date, in six long weeks.
Imagine my shock when on day five, a nurse calls to tell me that my son has far exceeded everyone’s expectations and is ready to come home the next day. My husband and I need to take a pediatric CPR class and receive training on the apnea machine, but otherwise, he is free and clear. I should have been happy, ecstatic even. My baby is coming home. But I am scared. “We don’t even have a car seat,” I reply.
This is how I find myself wandering the aisles of the baby section at Target. I feel exposed, like my body is on full display, like I am hiding some dirty secret. I have a round, pregnant-looking belly, but there is nothing inside of it.
I absentmindedly throw the essentials into a cart – preemie diapers, packs of wipes, dinosaur pajamas, bottles, a car seat. I have to ask for assistance in loading the car seat box into my car. The kind man who helps me tries to make friendly conversation, “When are you due?” he asks.
“I already had the baby. It’s a boy.” I slam my trunk shut, get in my car, and speed towards the hospital.
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I find myself back in Target buying diapers during my father’s final days. My mom has sent me a short list of things she needs to care for him: medical tape, antibacterial hand wipes, and adult diapers.
I look around at all the other people in the store–they walk with purpose, with urgency. Some are wrangling toddlers into carts. Others are talking on their phones as they shop. I wonder if anyone else has a dying parent.
One woman is studying the different brands of hand wipes so carefully that I start to lose my patience. She’s standing right in front of the ones I need. I want to shout, “Just pick one, lady. It doesn’t matter. None of this matters.” I don’t utter a word. I just stand there and cry. She looks at me with sympathy and a bit of disgust, then walks away empty-handed.
Nothing feels right and nothing feels real. No one should cry in Target.
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When we arrive home with our infant son, I hope my nerves will settle with the trauma and non-stop alarms of the NICU finally behind us. It doesn’t take long for me to realize that bringing my son home from the hospital—the thing I thought I wanted most—only heightens my anxiety. I become primal in my need to be near the baby at all times. When visitors stop by to marvel at his minuscule hands and doll-sized onesies, I rarely let them hold him. And if I acquiesce, I have visions of biting my family members if they make a false move.
I keep waiting for that euphoric motherly love that all my friends have talked about. When will I fall in love with this baby? Will I fall in love? My instinctual need to protect him is a love so powerful, I can’t see it for what it is.
What must it be like for my father to know that his days of protecting his family are over? Now that I know a parent’s love, now that I’ve experienced it two times over, I know what he is fighting for. He wants to stay. And my last kindness as his daughter, his baby girl from forty years ago, is to tell him it’s okay to go.
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My mother is a shell of her former self. She hasn’t slept, showered, or left the house in days. We are in the world’s worst waiting game. She can’t bring herself to leave his side because what if. What if he calls out for her? What if, after five decades together, at the exact moment she decides to run to the grocery store, he takes his final breath?
The nurses have told us it won’t be long. They can tell from the color of his skin, a mottled purple. I insist on spending the night at my parent’s house to give my mom break. She welcomes the reprieve.
My father is bedridden in a makeshift hospital room, the guest room in the house he built with his own two hands. Hospice sent us all the necessary equipment–a hospital bed, a commode, a wheelchair. We added personal touches like his favorite recliner and a large flat screen TV for him to watch the Yankees and HGTV during the few hours a day he can stay awake.
When I was a little girl, I remember being mesmerized at my dad’s brute strength. He could carry all three of his adolescent children at once; two of us would swing from his biceps and the third, my little brother, would perch atop his shoulders. Now, he doesn’t have the strength to lift his head from his pillow.
I settle into the recliner and turn on the lamp on the side table, so I can keep vigil over him throughout the night. The cloying smell of antiseptic hangs in the air. Just as I start to doze, I hear the sound of his breathing change. It sounds labored and frothy, like there is something stuck in his throat that he can’t dislodge. I go to his side and he asks for water. I put drops of water on his tongue through a straw as his swallowing reflex is already gone. Drop by drop, I try to provide him some relief. Drop by drop, I watch the life slowly leave his body. I hold his hand, and his breathing grows more distressed. I will later learn this is his “death rattle.” I’m glad I don’t know this as I sit beside him.
As I helplessly witness my father begin the process of actively dying, I whisper “you’re okay, you’re okay, you’re okay” over and over again. I say it so many times that it stops sounding like words. It becomes rhythmic, melodic, a chant. I rest my other hand on his chest, focusing on the rise and fall. I spent countless nights doing this same thing with my son when he was a newborn–making sure he was still breathing as I whispered “you’re okay.” I say it as much for them as I do for me.
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The parallels of my son’s early birth and my father’s untimely death are not lost on me. They are as beautiful as they are devastating. With my son, it was my responsibility to gracefully usher a new life into this world with as much peace and comfort as I could provide. It didn’t matter how exhausted or anxious or clueless I felt, what mattered was that I got it right. And for my dad, it was my responsibility to help him peacefully transition out of this world. It didn’t matter how devastated or nervous or childlike I felt, what mattered was that I got it right.
I hope I got it right.
Kaysie, Woman of a Certain Grace