Shaulee’s Door

This essay (excluding the photos and the afterword) won the 2004 Helen Candland Stark Essay Contest sponsored by Exponent II.

I. Spring

This is my first time inside Primary Children’s Medical Center. I am holding my toddler son Matthew on my hip, and I cannot stop crying. Probably, the people passing me think something is terribly wrong with him, from the way I’m carrying on. But Matt is fine; he has an appointment with the urologist here for a minor concern.

I’m the one with issues.

I should have seen this deluge coming. From the time Matt and I reached the foothills of Salt Lake City and began our ascent up the steep, twisting roads leading to the hospital, my thoughts turned to the parents and children who have made this drive with heavy hearts or fearful minds. Once inside, every young face we pass has a hold on me, each with its own story that I cannot read–injury? deformity? illness? We are in the outpatient wing; surely some of these children are here for relatively benign reasons. But I am not feeling very rational. I’m too caught up in the tenderest of human dramas: children, hurting.

The sign by the door to the Hematology/Oncology unit reads, Bone Marrow Transplant Patients Only. The door is open, but all that’s in view is a reception desk. A strategy, I’m sure, to protect the patients from being gawked at by people like me. What is it that I want to see, anyway? A confirmation of the awful truth that those who enter that door are children just like mine, parents just like me?

Then I notice the quilt, encased in glass on the adjacent wall. Its squares showcase artwork done by the young cancer patients. I examine drawings of a threatening dinosaur, a jolly “animal lady” feeding pets. One square preserves a collection of scribbles (was he too young, too sick to draw a picture?), another captures a spark of adolescence (“N’Sync Rules!”). And in the midst of these awaits Shaulee’s message for me, surrounded by brightly colored hearts:

Love is Forever . . . and Always.

The handmade quilt outside the Hem/Onc unitIn this setting, those words are anything but a greeting-card platitude. I make a fruitless attempt to keep from dripping on the floor, wondering why the sorrow that followed me up the hill is blossoming into a strange joy.

This must have had something to do with my recent prayers. Feeling somewhat closed off from other people and life in general, I had been asking for my heart to be opened. I expected the softening of the Spirit, an added gentleness with my five children, greater tenderness for my husband, maybe a more pure interest in my visiting teaching sisters. I never anticipated the floodgates to be opened–literally. For about three months, I cried about everything. Happy, sad–it was all the same, a burst-open feeling, like I had just emerged after a lifetime of being wrapped in plastic. It was heady, intense, almost unbearable.

Be careful what you pray for, right?

II. Fall

I am following an ambulance up those same twisting roads, my eyes locked on Matt’s little blond head. He is sitting in a car seat in the back of the ambulance, mercifully asleep. An I.V. line twists away from his hand, an inflatable cast cradles the spiral fracture in his right femur.

The ambulance doesn’t have its flashing lights and siren on, but the driver does about 85 anyway. I pray I won’t get pulled over. They would let me go–wouldn’t they?–if I told them why I was speeding, but even so, I would have to watch Matt disappear up the hill without me. Always, I will remember that drive: the warm dark night, the adrenaline pushing my eyes and heart valves open, the weird feeling like I was watching a very engaging movie, starring my son and me.

I hurry next to the gurney through the door marked Emergency Room–Ambulance Entrance Only. I am not crying this time–can’t afford the luxury of tears, got to keep sharp. My crime is not knowing how his leg got broken. That’s why we’re here at PCMC instead of staying back at Jordan Valley Hospital: any unexplained femur fracture in a child under two requires a child abuse investigation from Primary’s crack team of social workers. All I know is that Matt was in the kitchen alone for about thirty seconds before he began crying uncontrollably. I get to explain this to about a dozen different people, feeling increasingly panicked as I realize I can’t exonerate myself.

Matt in his cast--It's so hard to get comfy!Meanwhile, Matt snoozes on the exam table while two orthopedists swaddle him in blue fiberglass (my pick of colors) from armpits to ankle. The Cartoon Network provides entertainment as they affix a thick wooden dowel across Matt’s knees–a carrying bar, they tell me, although for a minute I think they’re joking. “I remember this!” says the attending orthopedist, singing along with Bugs Bunny. “Figaro, figaro, figaro! They don’t make good ones like these anymore.” Matt, under the influence of Fentanyl, is missing out on a quality cartoon.

They want to keep him (us?) overnight for observation. I don’t crack until about 4:30 in the morning, after nearly two hours of watching Matt be jerked rudely from sleep every two minutes by muscle spasms. Not even Morphine can quell his ripping pains. I’m two months pregnant, nauseous and weak, exhausted. The resident won’t give Matt the Valium the orthopedist recommended. I weep, furiously, in the face of the nurse. She is sympathetic, and offers to get the resident for me to chew out personally. I’m tempted, but refuse. That’s just what I need on Matt’s chart:Mother can’t explain accident. Threatens doctor.

Daylight arrives shortly, along with a full-body x-ray for Matt (to check for other potential crimes). He is sedated most of the day, and I am grateful–he deserves to be excused from life for a few hours. No such luck for me. The social workers are coming, and I somehow have to avoid assuming the public persona of a woman who would purposefully break the largest bone in her child’s body. Does my disheveled appearance speak to my credit–the caring mother who hasn’t even combed her hair during the course of her cribside vigil? Or do I appear as the woman I fear to be– supersaturated with motherhood, maybe not sadistic, just overwhelmed…

The x-ray comes back clean. Thankfully, the social workers seem relaxed. They question me carefully, have a phone interview with my husband, and plan a date for a home visit–just protocol, they say, to see the scene of the accident. For a few weeks, at least, I’m off their hook. As the team stand up to leave, I can’t resist a question of my own: “If I had done this to my child, wouldn’t you expect me to have some kind of a convincing excuse cooked up?” They look at me like I’m an idiot.

On our second and last day, Matt is stable enough to take a ride in one of the hospital’s fleet of Little Tykes wagons. I am drawn toward the quilt like a homing beacon, even though it’s a long walk to that wing of the hospital.

Love is forever, Shaulee repeats,and always.

I reach out for the glowing truth these words held for me before, hoping to feel a balancing force against the reality of children suffering, some at the hands of their own parents; parents suffering, from grief or guilt. Love may be forever, but today it seems far away, encased in glass, something to admire but not to touch.

***

Anyone with a clue knows that a new pregnancy plus a toddler in a body cast equals hard times. But I am dismayed, almost embarrassed, by my struggle to cope. I should (I think) be able to buck up, but I don’t. None of my tidy beliefs can pardon me from having to slog through the days, trying to distract Matt from his misery and keep some semblance of normalcy for my other four children.

Dear friends arrive to help, bringing listening ears and loads of food. One friend asks, “If there was one thing you could get done today, what would it be? Tell me, and I’ll do it.” I stare at her blankly. To answer that question would require mental awareness and prioritizing skills that are beyond me. Worst of all, I don’t even feel appropriately grateful. I have regressed to the emotional state of, at best, a fourteen-year-old. The world owes me.

The only stimulus that breaks through the fog is the upcoming threat of the social worker’s home visit. As the date looms near, my anxiety builds. Should I company-clean, or would that be too obvious? What should we wear? Will she interview the children, as I had been warned? Should I try to prepare them?

Matt in the carseat we borrowed from the hospital (with the cast on, he couldn't fit in his regular one)Logically, I know the possibility of having Matt taken away is remote. I do not beat or violate my children. But do I not have my own dark corner that is capable of terrible acts? For the most part, the door stays firmly shut on this part of me. Early on in my mothering years I felt the looming threat of that darkness and vowed to never spank again, lest the door be thrown wide open. Yet little wisps eke out from time to time–harsh words, a too-firm grip on a little arm, scathing looks.

Perhaps by society’s standards I am normal, acceptable. But the quiet truth settling upon me says that is not enough.

When the social worker arrives, I marvel that such a dowdy woman, with bottle-blonde seventies hair and cigarette breath, could have such a hold on the immediate fate of my family. I show her where Matt was when he broke his leg. She takes notes, theorizes that he must have climbed onto one of the chairs and gotten his foot caught in the rungs before falling off. She assures me that she does not suspect abuse. She’ll just make a report of the visit in our file, she explains, which will be put in a guarded database, accessed only if a similar incident occurs again.

And if it does?

I watch her maroon sedan pull out of our driveway. In the following weeks, whenever my tenderness for Matt begins to sag under the weight of his constant, restless, heavy presence, all I have to do is imagine that woman loading him into the back seat of that car.

III. Winter

The door to the Neonatal Intensive Care Unit is locked. Six months ago, when Matt and I were in the infant unit down the hall, this door held such an air of sad mystery. I pick up the telephone on the wall to notify the receiving desk that someone worthy to enter has arrived.

Sam at Salt Lake RegionalSam is stretched out on his warming bed, enjoying his own dose of Fentanyl. Weighing in at 8 lbs, he looks Rubinesque compared to the babies I stole glances at on my way to Bed 34. But the dozen or so peripheral lines attached to him attest to his true condition. I.V. lines in his hands, feet, and head give synthetic nutrition, blood pressure medication, antibiotics. Monitor leads snake away from his chest to a wall of chirping, blinking display screens. An umbilical line provides a handy spot for blood draws. Another line, the ventilator tube lodged in his airway, connects him to the machine that is keeping him alive.

Technically, he was not premature.A 1-in-1000 chance of premature lungs, my O.B. told me at my 37-week exam, when his fingers found a 4 cm gap. We won’t encourage labor for at least another week. But that evening, it became apparent that Sam had been adequately encouraged.

At 2:01 a.m., I became a mother again. The scene looked familiar–Reed by my shoulders with the video camera, blood dripping in the mirror image, gorgeous slimy baby held up between my legs. But the baby didn’t cry on cue. The doctor and nurse played it cool for the minute that seemed to last forever, laughing with relief when the high-pitched wail finally struggled out of his mouth. I joined in the laughter, puzzled by the tightness of his cries, but confident–he was so big, so healthy!

Sam just after birthBut so sleepy. Sam wouldn’t nurse during our prescribed bonding hour. Exhausted, I let the nurse tuck him into the crook of my arm so I could join him for a pre-dawn nap. I listened to him breathe as I dozed–do all babies snore? Something didn’t feel quite right, but in my bone-deep fatigue I couldn’t wrap my mind around what that might be. I heard the nurse come in, felt her lifting Sam away from me, felt cold air fill the place where his warm little self had been. “We need to check his oxygen,” she said, trying to sound calm.

On the third night I wake at 2 a.m. for a visit with the breast pump. Ten miles away at Salt Lake Regional Medical Center, Sam’s condition has been steadily declining. A few hours ago the nurses cranked his oxygen level up to 80%, four times the saturation that I’m breathing. The pump hisses rhythmically as I sit and numbly contemplate my possible loss. His little fists waved so bravely today when I spoke to him. I even saw his eyes for the first time, deep grey jewels searching for my face. What would it be like to have to keep on breathing without him?

When I walk into the nursery the next day, the neonatologist is waiting for me. I sign the papers on the clipboard and climb into the front seat of Sam’s ambulance for a ride up the steep, twisting road to PCMC.

Sam being transported to PCMCNow all I can do is keep my sanitized hand on his chest, which vibrates with the pulse of the specialized ventilator he needs. His perfect skin has a counterfeit healthy glow–the bronze cast of oncoming jaundice. Looking back, I am grateful the nurse took him from me before I opened my eyes and saw him, stained blue by failing lungs.

***

The days pass in a blur. I call people who love me, relieved when they gasp and cry. Somehow, I am handing them the most urgent portions of my pain. It helps to know that someone is feeling it.

My mother flies 2000 miles to play surrogate. She peels a screaming Matt off of me in the mornings, and I start the car with a stream of words I have not uttered in ten years. After a three-minute surgical scrub in the washroom, I sit in a stupor next to Sam, drowsy from the heat of his warming bed, trying not to think about the sign I saw on a closed door: Private. Family Meeting in Progress.

I am not supposed to look at, breathe near, or ask questions about any of the other babies here. But I can’t pretend to ignore the isolette across the room. Its walls, dripping with condensation, speak of a treasure within. No parents guard the way, so when the nurse leaves to get narcotics, I make my move. The name card on the side of the isolette reads, Brett. Peering through the humidity, I scan for the baby. It takes me a few long seconds to find him. Curled up, he is the size of my hand. His translucent skin is shiny and bruised; his tennis-ball head is covered with purple-black spots. I stare, transfixed by the seemingly impossible sight of such miniature life, until one of his monitors begins to beep. I am caught in the act by the returning nurse, who, luckily, is more relaxed than some.Only twenty-four weeks, she explains. We don’t try to save any younger than this. She reaches in to affix one of his leads.His poor skin bruises whenever I touch him.

Every three hours I go down the hall to the room filled with breast pumps. Watching my best attempt at liquid life drip into the bottles, I wonder if Sam will ever nurse. For now the milk must wait in the hospital freezer’s bins, which are nearly overflowing with little plastic containers, the hopeful offering of dozens of mothers. I look at the babies’ names written on the bins and wonder how many will live.

At the end of one long day, I stand by while the nurse tries valiantly to start a new I.V. line. Sam squirms as she firmly strokes his inner arm with an alcohol pad, looking carefully for a good vein. Finally she resorts to a vein in Sam’s head. The needle punctures his scalp, his mouth opens, but the ventilator tube between his vocal cords prevents him from making any sound.

It is late. My ride will be here any minute. But my feet turn towards the outpatient wing instead of the main exit. The halls are nearly empty; I break into a half-run. What will I say if a security guard stops me–My baby’s in the NICU and I need to see the quilt?

Love is forever . . . and always.

No tears come, no doubts either–just my panting breaths.

***

On Sam’s twelfth day of life, I try to steady the video camera as the respiratory therapist prepares to remove the ventilator tube. The adrenaline rush is making it difficult for me to hold still. He tugs, we both wait breathlessly for the sound of life–and it comes, a raspy cry of triumph.

This is only the beginning of the wonders of the day. Once Sam proves he is able to breathe, I will be allowed to hold him.

At dusk the nurse, finally satisfied that Sam is stable enough, gathers up the bundle of blankets, wires, and baby and carefully places him in my arms. It will make it all the more sweet, another nurse had assured me days ago when I was pining away for the touch of him. I could have hated her for saying that, but something in her voice told me that she knew.

Now I know as well.

***

Sam was two weeks old the day he took an ambulance ride back down the hill to Salt Lake Regional, breathing on his own, but still taking tube feedings. I wonder who has taken his place. I wonder if Brett is still alive.

Sam’s new roommate is Damian, a blond butterball destined to be a linebacker. His shrieking cry is incongruous indeed. And shriek he does, blindfolded and squirming under the bilirubin lights. His mother, standing by with bare feet and a wrinkled hospital gown, seems unruffled by this. But when the neonatologist recommends a spinal tap (for reasons unknown to me), she cracks.

I am surprised a few minutes later to see two large men in hospital scrubs making their way to Damian’s bassinet, then introducing themselves to Damian’s mother. They are hospital employees and priesthood holders, come to give Damian a blessing. I wonder if I should leave, being a stranger, but Sam is in the middle of a feeding. It is a meeting of strangers, anyway–until they place their hands on that not-so-little blond head.

Sam's last day in the NICUWhen I walk in to the nursery for the last time, it takes me a minute to recognize my son sleeping in the bassinet. His peripherals are gone, leaving only his perfect baby self. I pick him up and savor the freedom of carrying him more than 18 inches away from his bedside. I rock him without anything getting disconnected or tangled. In a few hours, we will make our getaway.

A few feet away from us, a young Hispanic mother is nursing her new son, who has been lolling under the bilirubin lights all morning. Her face shines with delight. I love you! sound the sweet strains of her voice, over and over, Oh, I love you. Her words, her hands, caress him. It is a sacred moment; I try not to look. I love you, she trembles.

Across the room, a small crowd is gathering. I stand up to see better. A woman in a propped-up hospital bed is wheeled in as near as possible to one of the warming beds. A man in hospital scrubs stands close by, silently weeping. Their son lays wailing on the warming bed. An oxygen case surrounds his tiny head, muffling the sound of his cries.

I can’t stop staring at the father. With considerable effort, I check the urge to run over and embrace him, and cry instead. Sam’s nurse comes up behind me. She just had an emergency c-section. The baby is having seizures. They’re going to transfer him to Primary’s, she explains. I feel her sympathetic hand on my shoulder. It must be very hard for you to see.

IV. Summer

One by one, I am thawing the breast milk containers, using the hard-earned liquid to mix with Sam’s baby cereal. Each time I open one, I note the date and hour marked on the label, and feel I am cracking open relics from another age.

Sam, fat and happy at homeSam is six months old now, fat and happy and cute beyond words. Strange, to be nourishing him now with bottled hope from a darker time.

Pieces of the dark still remain. The other night, feeling safe, I pulled out the videotape of Sam’s birth. As I watched him struggle to take his first breath I was hit by a panic attack that reduced me to a sweaty heap on the bed. Grief may arrive late in the season, and must take its due. But I am mindful that my debt to grief is relatively small and that others wait lifetimes for their happy endings.

Other remnants of this year demand reckoning as well. Images press upon me daily, in the car and the shower and the kitchen, insisting that I make connections. I see the bruising hand of Brett’s nurse, the priesthood hands on Damian’s head, my hand on Sam’s chest. I watch the nursing mother oozing joy, the father dripping sadness. I feel my arms aching to hold Sam, then thrilling at the soft weight of him. I stand in front of the quilt first discovering, then questioning, then enduring that strange union of sorrow and joy which has enveloped my year.

Amidst the business of my days, I hold these pieces in my mind and feel the light of the Spirit combining them, revealing an early harvest of understanding: The sorrow and the joy were not adversaries, but partners–the two faces of love. Love was the tenderness, the relief, the delight that graced this year. But it was also the sorrow I felt for Shaulee and for my sons, for all suffering children, and for their parents, guilty or not. It was the pain that, misunderstood, made me doubt love’s presence and power. It was the cries of my friends and my curses in the car. It has been love all along.

It is not hard to know this, standing in the warmth of my summer. But when the next door opens, and winter comes again, will I know it still?

Afterword

When Thomas was in the hospital, I walked past Shaulee’s door every day for six cold weeks.

Thomas, 2 hours oldThomas, 1 day oldThomas, 3 weeks old, on the ventilatorKathy and ThomasI continue to make regular pilgrimages to PCMC for various appointments with specialists, and each time I look at the quilt and think about my sons. I think about the question I asked myself two years ago, about whether I could retain the light of summer when winter came again.The answer is yes, and no.I did remember what I learned, and drew strength from it. I remembered the gut-twisting ache, the uncertainty and fear, the fatigue and frozen feelings, the post-traumatic stress reaction. I remembered that I had endured that before, and knew I could endure it again. I remembered what it had taught me, and knew I was being taught again. Yes, my experiences with Matt and Sam were stepping stones–I could see that even before the spring approached. But still, no matter how hard I tried, I could not skip, or even shorten, the dark season.Tomorrow, I’m taking Thomas in for an MRI scan. He has a brain abnormality causing hearing impairment. We hope that this does not indicate more serious problems with his neurology. Summer is upon us, and I feel somewhat able to ignore the sense of doom that comes knocking so faithfully whenever we face such uncertainties. Still, whether it be sooner or later, I am confident that winter will come again.And, looking at the evidence, I am equally confident that spring will always follow.

Thomas and Sam Sam is now three years old. All the trauma of his early weeks is now history.

Thomas and Matt Matt is now five years old. X-rays show that the section of bone which was fractured is now strong–much stronger than it ever was–as the result of being broken, and then healed.

As I face the coming seasons, I can only hope that the same will hold true for me.

Welcome to the website of KLS:

seeker, writer, editor, loudmouth, mother of many, depression survivor, disability advocate, Greek-blooded American, salted caramel addict and Radiohead groupie. (Not necessarily in that order.)

Art credit: "Altered Waters" by Leslie Graff

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