55 Days: The Kinship We Need

The mother* in Room 6 is lonely.

Her infant son is two months old. He has spent 21 of his days on earth in emergency departments, outpatient clinics, and hospital cribs like this one. She tells me, “He has had only three days at home.” But she speaks Urdu, so it’s actually a video interpreter who says it.

The mother in Room 6 is often on the phone with her husband who is at home, 90 miles away, caring for their four-year-old son, losing money by the minute because he is unable to pick up his regular number of rides driving for Uber.

This is not what they had in mind when they immigrated to the U.S. This is not what they had in mind when Mom felt this baby’s first quickening, when they prepared to bring another life to earth.

What can I offer? Too few minutes of in-person socialization with the help of this video interpreter on the hospital iPad. I listen. I nod. I affirm what she says: I am worried about money. My son at home misses me. I provide what is called, in the realm of Social Work, “compassionate presence,” “rapport building,” and “unconditional positive regard.” I dispense a letter she requests, supporting a nonimmigration visa for her mother to visit from Pakistan.

I move on.

The mother in Room 11 is lonely.

Her daughter is seven months old and has been hospitalized eight times due to seizures. The doctors don’t know why the medications that work for everyone else aren’t working for her.

This tiny human is her first child. “So, you are experiencing the enormous identity transformation of motherhood, with all the sleep deprivation and physical assertion that accompanies it, while also weathering the ups and downs of these medical emergencies?” I ask.

Tears well on the rims of mom’s lower eyelids. “Yes.” She looks down at the infant nursing at her right breast. She asks, “Do you know of any support groups?”

I give her the web address for a local non-profit. I tell her about groups on Facebook: “As remote as social media contacts may seem, odds are, if you’re up at 2 a.m. and you need a kind word, someone else in a group for parents of infants with medical needs is probably going to be awake, too, needing the same.”

She thanks me for saving her the time it would take to search for connection, but I know it’s not enough. It’s what I can do before

I move on to the teen with a traumatic brain injury who is disinhibited due to a bruised frontal lobe, who has spent much of the morning berating her mother for “causing me so much anxiety” and “always ruining everything.” And mom is taking it, sitting in the chair in the corner where her daughter can’t see her face, silently crying.

I tell the teen, “You sound upset. Do you want to stay upset, or would you like to learn a trick to help you calm down?” We practice box breathing — count to four on the in-breath, hold for a count of four, exhale for a count of four, then hold for four at the bottom. Repeat. Repeat. Repeat.

After a few rounds, tears slide out the corners of her eyes, dripping onto to her pillowcase. She whispers: “I just want to go home.”

I say, “I know you do. I’m so sorry this is happening to you.” I find her hand under the blankets and squeeze it. “Keep breathing.”

On my way out, I give Mom a cafeteria voucher. I place my hand on her shoulder and remind her, “It’s okay to leave the room. It’s okay to take a break.”

I move on to the parents of a three-year-old boy who melted away in front of their eyes — losing stamina, then movement, then speech — due to intercranial swelling of unknown origin. It’s been a month. He’s still non-responsive. But a therapy that makes him scream and mewl and cry like a feral cat — it might help.

The parents have not yet found the words for what they are going through. “Torture” comes to mind. From the menu of trauma responses, “fight,” “flight,” “freeze,” or “fawn,” their sympathetic nervous systems appear to have chosen “freeze.” They are standing in that space between what was and what will be — the vacuous unknown that gets filled with prayers and hopes and terrifying thoughts they don’t want to entertain.

When they are ready, I will introduce the concept of “ambiguous loss” — their son is here, but not here. Grief gets stuck when you don’t know exactly what you are grieving — Is he gone? Is he coming back?

But today is not the day for that. Today I give a kind word, an acknowledgement of how difficult it is to watch their little one suffer, a reflection of their dedication and fortitude, a reminder that I am available if they need me.

This is the Pediatric Intensive Care Unit. All day, entering the rooms of families whose hopes, plans, and expectations have been usurped by living nightmares. All day, one need trumping the next, at high speed, non-stop until — here I want to say, “until I clock out at 6,” but I know it continues long after I’m sheltered in my car, driving the rainy streets toward home.

It never stops.

For these families of medically fragile children, of forever-changed children, in or out of the hospital, it never stops.

For those of us who care for them, it stops until

I wake up in the middle of the night thinking, “they’re both lonely,” and wondering if the mom in Room 6 would want to talk to the mom in Room 11, and vice versa,

about motherhood and medical emergencies and loneliness and fear of the unknown and their broken hopes and their beautiful babies and the common threads that connect them despite their apparent differences.

How often is this the case? We sit in our private boxes, pained by our unmet needs, oblivious to the people right in our paths who share them?

What if I said, “There’s a woman five doors down — may I introduce you to her? Don’t worry about the language barrier, we can get an interpreter.”

What if the kinship we all need is right down the hall?

***

*Identifying details of all patients, families, and their situations have been omitted or changed.

Cheryl Dumesnil is a poet, writer, editor, and writing coach, with a side hustle as a medical social worker. Her books include three poetry collections, What Is Left to Say, Showtime at the Ministry of Lost Causes and In Praise of Falling; a memoir, Love Song for Baby X; and the anthologies We Got This: Solo Mom Stories of Grit, Heart, and Humor and Dorothy Parker’s Elbow: Tattoos on Writers, Writers on Tattoos. To learn more about her work, visit cheryldumesnil.com.