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Tag: children’s memorial hospital

because in the annals of saints, nurses are among the holiest…

julie joyner + pumpkin head

i went back to my old hospital yesterday. my long-ago, very-much-loved hospital. i went because it’s nurses week, and someone asked if i might wander back and whisper love notes to the nurses. i couldn’t have been more tickled.

DSCF7434even though it’s changed its name — from children’s memorial to lurie children’s — and it’s moved — to the glimmering gold-coast streeterville, in the shadow of the john hancock center, from its old spot at the triangle of lincoln, fullerton and halsted, it’s still the place that’s a beacon to some of the sickest kids on the planet. it’s a place, i’m convinced, where the nurses who work there are nothing short of not-yet-canonized saints.

some of the searingest moments of my life were seared in the chambers of old children’s. i still remember my very first day on the floor where i would work for the better part of three years. there was a six-year-old named pebbles. she had cystic fibrosis, so her lips were blue and her lungs rattled and heaved with every in and out breath. the day i started work at children’s was her birthday, so all the nurses swarmed around her hospital bed, and started to sing. i started to cry. stood at the back of the crowd that ringed her bed, and could not stop the stream of tears as i absorbed the whole of all of it. i was new, was raw, and hadn’t yet figured out how my heart would absorb the inevitable, the heartache, that so often comes when you spend your days keeping kids as alive — for as long — as is possible.

i remember, just as vividly, the moment when the first kid who i’d loved died. his name was joe, joe thornton, and he had one of the cancers of blood — not leukemia, but one of the even more awful ones. i’ve now been present at births and at deaths, and i can tell you that both are equally vaulted moments, moments so sacred you feel the distance all but evaporate between heaven and earth; you dwell, at each end of life, in an in-between space so anointed you can practically feel the breathing of angels at the back of your neck. but joe’s was my very first death, and i didn’t know how it would be. when it came, when his last breath never gave way to another, it was as holy a moment as i’ve ever witnessed, the slow, and silent, and soft-petaled ebbing of life, of heartbeat, of breath. i remember feeling blanketed, as if the softest most blessed space — some new dimension of timelessness — had draped around my shoulders. i remember bathing him, bathing away the last bits of the earthly struggle that had been left behind. i remember the sound of the washcloth swirling through the tub of warm water. i remember the sound of his mama’s wail.

i remember, too, julie joiner, the 14-year-old with the spinal tumor that had left her unable to walk, the sweet girl up above in the black-and-white photo. i remember the moment she called me into her room because she’d been hard at work on a top-secret papier-mache pumpkin head. she’d painted it shamrock green, draped it with orange yarn (aka hair), carved out triangular eye holes, and called it “the irish pumpkin queen.” she made it for me, and she very much wanted me to spend the rest of my workday wearing it. i remember the way she laughed when i first slipped it on. she was a kid who didn’t laugh easily — and who would, with a tumor pressing against your spine, and your mama up and gone for reasons you never knew? reasons that left her papa alone to mind over her and her two other siblings — but she melted like butter once i put that hollow green pumpkin over my head.

children’s was like that. is like that. story after story. heartbreak upon heartbreak. only, they tell me it’s even harder these days to work there because kids are sicker, the socio-economic safety net more unraveled, and medicine, far more complex. the nurses at children’s expend every imaginable super power.

so my heart was triple-timing when i walked in there yesterday. when all the nurses started to trickle into the room. when, one after another, i looked into faces i hadn’t seen in 30-some years. because here’s the most amazing thing i discovered yesterday: as tough as children’s can be on your heart — as many times as a nurse’s heart can be shattered and trampled and left gasping for air — nurses don’t walk away. they stay. for the long haul.

it’s as holy a calling as ever could be.

there are nurses i worked with, side by side, back in 1979 till 1982, and they are still there. still making kids laugh. and burying sobs against their chest. still helping parents decipher very bad news. still carrying home heart loads of worry, and plenty of stories that make you spit out loud laughing. because kids are like that. and sick kids are just like everyone else. only a heck of a lot braver. and more likely to make you go weak at the knees.

and sometimes they’ll say things you’ll never forget.

like the kid whose name i can’t remember, but i do remember this: he was a very sick kid whose mama had finally gone home for a night; she lived far away, in indiana, i think. turned out he took a sharp turn for the worse that very night. he was dying. so his nurse was the one who sat close beside him, who took his hand, and just held it, all through the dark of the very long night. as the little boy’s breaths came shallower and shallower, he started to talk to someone the nurse couldn’t see. said something about how he was ready; he’d take his hand now. then, suddenly, the kid who’d been barely catching each breath, he startled, opened his eyes and said with the most animated, radiant face the nurse had ever seen: “you can let go now, i’m taking God’s hand. i’m going to heaven.”

and then he let go of the hand of his nurse, and he died.

and that’s why i looked those nurses straight in the eye — and the heart — yesterday, and i told them this: “you, nurses, do the holiest work: you heal the wounds of the body, but also the heart and the soul. you listen. you troubleshoot. you make the impossible possible.”

and each and every one belongs in the canon of saints.

if you’re a nurse, what drew you to become one? if you’re not, do you have a story of a time when a nurse pretty much ushered you — or someone you love — into the inner sanctum of all that is holy and hushed?

and happy blessed day of mothering, a definition i believe in because the verb, “to mother,” is all inclusive, and counts anyone who’s doled out the great gifts of nurturing and attending, and loving and doting, that define motherhood.

photo credit to my beloved nursing colleague, claire dassy, photographer and archivist extraordinaire. i never knew that picture existed till a few months ago, when dear claire melted me and sent it my way…..

the courage to come back. one last time.

i went back to my old hospital, children’s memorial in chicago, on a sunny sunday afternoon this past weekend, for what was billed as a “closing ceremony” for families who had had a child die there. the old hospital is coming down soon, and before its nine stories are crumbled to a pile of shattered bricks and twisted rebar, the hospital’s biggest hearts and best minds understood that those families needed a chance to say goodbye to a cornerstone of their life story, no matter how dark the chapter.

it was a story and a moment i had to honor. as a nurse i was there for my beloved troupe of kids, the ones who died on my watch: julie joiner, a girl i loved, a girl who had cancer in her spine, and who, lying flat in her hospital bed, once made me a papier-mache pumpkin head and painted it green. she called me her “irish pumpkin queen.” and did i mention i loved her dearly, still think of her, still remember the gift it was to be her nurse? i was there, too, for joe, and for pebbles, and for jeffery, and for denise, and even for the kids i loved whose names i don’t remember. i was there for their mothers and fathers, who allowed me to care for and to love their children, straight through to their dying breaths.

i was there as a writer, too, because over all these years i have learned that words are the finest instruments i can reach for as i carry on my nurse’s promise: to shed light where there is darkness, to hold up the human spirit, and to aim to heal through whatever form love flows. here is the story i wrote. even though it won’t run through printer’s ink in any newspaper, sharing it here is rich enough for me.

By Barbara Mahany

Most of all, it took courage.

Even before they got there, it took courage to scribble the date and the time and the event — Closing Reception for Bereaved Families — onto the calendar.

It took courage to get on the plane in New York or Arizona, or to climb in the car or the pickup truck in Iowa or Highland Park or Tinley Park, and head back to the corner of Lincoln and Fullerton and Halsted streets in Chicago, where for 130 years, Children’s Memorial Hospital has stood, a brick-and-mortar reminder to everyone who walked or drove by that it is not to be taken for granted that children are full-cheeked, and blessed with mops of hair, and can romp in the sunshine.

To go back there, to go back to the place where you heard your child’s last breath, where you held that child in your arms one last time, or kissed him or her on the forehead, or where you crumpled over their lifeless body, is to open a deep dark vault of pain and emptiness that never goes away.

And so, once there at that unforgotten place, you could see the courage it took just to push the “8” button on the elevator of the parking garage, to get to the rooftop on a sun-soaked Sunday afternoon domed by a blue sky pocked with puffy clouds.

You could see it in the faces of the mothers who looked as if they held back a seawall of grief. You could see it in the way a grown son wrapped his arm tight around his mother’s shoulders as they strolled down Lincoln Avenue and turned in at the parking garage, or the way a father clenched the hand of his wife, and leaned hard against the glass. You could see it as the mother in big dark sunglasses squeezed her grown daughter’s hand so tight her knuckles blanched white.

For the 350 or so mothers and fathers and brothers and sisters, grandparents, aunts and uncles, all from families who had had a child — a newborn, a toddler, or a highschooler — die at Children’s, it took a rare brand of courage to come back, one last time, to whisper yet another goodbye.

This time, though, the goodbye was to the building that, for many, had been etched into their darkest memories — the floorplan all but memorized, the steps from the nurses’ station to the door of the room still known by heart, the view out the window frozen in their mind’s eye. Even the nubby fabric of the seats in the chapel, those are the details of a dying and death that are never forgotten.

“One of our first concerns when we started making plans to move to the new hospital was the bereaved families,” explained Kristin James, director of the hospital’s Heartlight bereavement program, which provides support for at least two years to the families of any child who dies at Children’s. (The name of the program, she says, came from a mother who said her heart “went black” when her child died, and not until she met another bereaved mother did she feel the light again.)

“Children’s represents a time, a moment, a chapter. It’s part of their child’s history,” James, a family therapist, continued. “For some of those children, their whole life was spent here. For some, just a few hours. Either way, this becomes a sacred space. So, for some of our families, closing this building felt like a whole other loss.”

She went on: “Children’s is not contained within walls, it’s not limited to a space. Those children who died here, those memories, they are coming with us to the new hospital. It’s very important for the families to know that we carry those children in our hearts.”

And so, some 2,000 invitations were mailed back in March to each family whose child had died there in the last 12 years. Through word of mouth, even the family of a girl who died in 1932 responded. Every day for weeks, James said, dozens of those families have called, just to retell their story, just to make sure all wasn’t lost.

Because until moving day — Saturday, June 9, when the Ann & Robert H. Lurie Children’s Hospital of Chicago officially opens — the Lincoln Park hospital was still treating children on its medical and surgical floors, in its intensive care units and emergency rooms, the “closing ceremony” was held on the rooftop of the parking garage across the street, looking onto the concrete-and-blue-tile tower, just below the helicopter pad where the sickest and most critically injured children have been airlifted over the decades.

Purple tulips and blue hydrangea, tucked into silver cups, teetered on tabletops in the afternoon’s wind. Chimes clanged. And the elevator doors began to open and close, ferrying the somber families.

“It’s 31 years; it’s never left me, you know,” said Charlene Wexler, whose then-12-year-old son, Jeffery, died of leukemia on Sept. 11, 1981, and who pulled from her purse a clutch of snapshots of the full-cheeked boy who once had a shock of jet black hair. She was shaking, and already dabbing at tears as she filled out the name tag, and wrote the name “Jeffery,” after the word, “Remembering…”

“It’s like I can play everything back,” she said, as she began to pull story after story from her memory. She hadn’t been sure she’d be able to make the trip back to Children’s, she said, but her husband urged her, and her sister and brother-in-law met her there.

“Our tears are our trophies,” said the brother-in-law, Jack Segal, as he wiped one off his cheek.

Not far away, another mother, standing in line for a cup of water, didn’t even try to brush away her tears.

“Why come? I had to come. How could you not come?” said Barbara Pinzur, whose son, Brett, was just five days old when he died in the neonatal intensive care unit, back on May 22, 1994. He had been born with three, not four, chambers in his heart, and just the week before the closing ceremony, Pinzur, of Highland Park, said she opened his baby box. She pulled from her purse the card the NICU nurses had sent after Brett died.

“It’s incredible that the hospital remembered all of us,” Pinzur said. “It’s a way of saying, ‘Your child didn’t die for no reason.’ A child dying has to have an impact on somebody — a nurse, or a doctor — to do more, to do better.”

And so, after the reciting of the children’s names, and the tinkling of chimes, and the reading of a poem or two, the mournful bagpipes of the Emerald Society shattered the near silence of the rooftop crowd.

One by one, the mothers and fathers and brothers and sisters and grandparents, aunts and uncles and friends, dipped itty-bitty wands into vials of bubbles, and exhaled. A cloud of iridescent spheres up and wafted across the rooftop, out over Lincoln Avenue, and toward the place where so many children have died.

At last, a smattering of smiles broke across the sea of somber faces. One of the mothers ran to the rooftop’s concrete half-wall, pulled out a camera and tried to capture one last snapshot. And just as the camera clicked, the bubble exploded and was no longer.

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the photo above was taken on the hospital’s parking garage rooftop, and the magnificent city skyline is the backdrop to a red jewel crabtree that will be planted in a park across from the old hospital’s site. families were invited to fill out a tag with a name or a memory, and hang it from the branches. when the tree is planted, the tags will be buried at its roots, so that the families always have someplace, some sacred place, to come back to.