I took a deep breath and listened to the old brag of my heart. I am, I am, I am.
Sylvia Plath, The Bell Jar
There’s a stillness that descends on the hospital late at night, softening the harshness of bright lights and the sterility of hard floors. Sounds are muted and voices are hushed. Sydney is the only patient in the sleep lab tonight located at the end of a long, empty corridor. It’s dark in her room but for a night light and the glowing dots of the medical devices she’s hooked up to. I shift uncomfortably in the reclining chair next to her bed and wonder how I’ll make it until morning. It occurs to me that my father-in-law spent more nights this way than I can count during the fourteen months of my mother-in-law’s battle with cancer. It also occurs to me that the last time I sat in the dark next to a hospital bed was with him, the night before she died.
But here and now, Sydney is well; we’re only here for one night, for a sleep study. Colored wires trailing from the electrodes glued to her head are gathered like a rainbow ponytail and plugged into a large unit sitting on the bed next to her pillow. A smaller unit is strapped to her chest emitting various cords that coil and disappear under the blankets, connected to her legs and other body parts. The tubing for the cannula in her nose and a sensor that protrudes over her mouth like a tiny microphone tucks behind her ears and tightens under her chin. More sensors are taped to her face at her cheeks, temples and chin; an alarming sight if you don’t know what you’re looking at.
My girl knows the drill, though, having undergone sleep studies in the past, the last one when she was seven. She put up very little resistance then; now, as a fourteen-year-old, she may have protested a little more, but overall, she succumbed to the awkward and uncomfortable preparation for the test without complaint, the ever-accommodating child. While I can’t imagine being able to drift off rigged up like this, Sydney is sleeping the peaceful sleep of the innocent as cameras and monitors record her CO2 and oxygen levels, her heart rhythm and other vitals, as well as her gross motor movements. She’s my good sleeper; always going down easy and sleeping through the night.
Her first sleep study was when she was just a week old. She came exactly on her due date and though we had no suspicions of Down syndrome, her birth wasn’t without incident. Labor came hard and fast, but since she was my third, I stubbornly paced at home awhile and insisted on taking a bath and shaving my legs before I let Steven convince me to make the 30-minute drive to the hospital. I guess I pushed it too far; once there, frenetic activity ensued and nothing much went according to the beautiful birth plan I’d created, including the epidural I requested. In between painful contractions I noticed a conversation between nurse and doctor and sensed some concern. When a neonatologist showed up I knew something wasn’t right and in my delirium I thought I heard talk of meconium. Before I could make sense of it, she was here and I caught a brief glimpse as the doctor handed her to a nurse who whisked her quickly away to a warmer. I thought she seemed blue and for a few terrifying moments it was silent. There were no cries from my newborn, no talking from the medical personnel huddled around my daughter, and no words from my husband. “Was she blue? Didn’t she look blue to you? Is she breathing?” I questioned him. Face hidden behind the surgical mask, his eyes conveyed thinly veiled panic as they widened and followed our baby across the room in response to my question.
I later learned she was under fetal stress, meconium was present and they didn’t want her to breathe before her lungs were suctioned to be sure she wouldn’t aspirate. It seemed interminable, but after a few moments, she took her first breath and pinked up. Relief flooded my body as I reached for her; I wanted my baby. A kind nurse, Leann—whom I’ll never forget, brought her to me, but gently told me Sydney had to go to the neo-natal intensive care unit; she was sick.
She spent 14 days in the NICU and it was about halfway through her stay that Steven noticed she would intermittently stop breathing. Watching her intently for hours and hours as she lay in her isolette connected to a pulse ox, heart monitor, central line, oxygen, IVs and various tubes and wires, he saw her little chest rise and fall, then . . . nothing. Stillness. Several seconds passed before she took another breath. Because of her Daddy’s vigilance, Sydney was found to have sleep apnea and we took her home on a monitor.
In newborns sleep apnea is an underdeveloped neurological issue in which the brain fails to signal the body to breathe. The monitor is a safeguard, set to alarm when no breathing is registered for an interval of 20 seconds. Adhesive electrodes stuck to the bare skin of Sydney’s chest were attached to lead wires that plugged into a bulky metal box. Not to be disconnected except during bathing, we lugged that thing everywhere we went. For nine months.
Inconvenient? Maybe, but the reassurance was worth it. I’ve always had a thing about my babies’ breathing when they slept and I’d check them frequently, feeling for the whispers of air moving in and out of their tiny nostrils. Sometimes they were so still I’d wonder, “Are they alive?” then nudge them, relieved to see them shift position in response. With Sydney, the monitor was my 24/7 electronic sentry on duty.
Once she was finished, we didn’t have to worry about her central nervous system regulating her breathing, but we did look at the potential for obstructive sleep apnea—not uncommon with Down syndrome—where a variety of factors contribute to air flow blockage. For example, Sydney’s tonsils. They’re enormous and though not chronically infected, enlarged to the point of nearly touching and closing off her throat so that when she sleeps on her back and breathes through her mouth, she snores, gags and stops breathing for a few moments, warranting another sleep study. Although the results didn’t implicate treatment when she was seven, the plan was to watch her and repeat if needed. And since she still snores and has trouble breathing when she sleeps, her tonsils are still gigantic, and recently she’s been restless when sleeping and fatigued throughout the day, the doctor ordered the test.
“Why do I have to go to the hospital, Mom?” she asked me earlier today as we packed her pillow and blanket along with her iPad.
“The doctor wants to watch you sleep. So we can see your breathing.”
I look at my slumbering little daughter across the darkened room. When she fills her lungs, I can see her breathing. When she snores, I can hear her breathing. But I can’t actually see her breath, the air that moves in and out of her body. I think how fragile is this invisible, delicate stream and yet how powerful. It is the physical exchange of oxygen for carbon dioxide which is miraculous in and of itself; we are purified and nourished in every moment, taking in what we need and releasing what we do not. But more than the mere breath itself, there’s a universal energy that flows like a river through the landscape of the body and through all creation, connecting us with everything that lives. It is the very force that animates the inanimate.
In all the wisdom traditions of the world, the breath is sacred. In Sanskrit: prana, the original life source; in Native American culture: the Divine Breath, the divine spirit in all living things; in Christianity: God’s breath of life, breathed into man’s nostrils; in Buddhism and Taoism: Mindful Breathing, the path to enlightenment; in Hebrew tradition: the nephesh or soul, an animated, breathing, conscious and living being; and in Sufism: breath, the source which keeps body and mind alive, and body and mind connected.
Our constant companion from birth to death; breath is there . . . until it is not.
I witnessed Sydney take her first breath and come fully into this world as a living being. I also witnessed my beloved mother-in-law take her last breath and quietly ease out of the physical world. The thought fills me with a rush of profound awe and deep gratitude. Life is incredibly precious. A gift in every moment. Every breath.
I close my eyes and turn my focus inward, to my own breath. Inhale . . . Exhale . . . Inhale . . . Exhale . . . Anchoring to the present moment, I quiet my mind and bathe in stillness. It is here that I come to commune with the sacred. It is here that I find everything I need. It is here that I connect to source, to the divine that unites us all. All I have to do is breathe.
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