Saturday, November 26
Saturday is my usual work day in the pediatric ICU.
This particular Saturday falls on Thanksgiving weekend, so my social media feed is full of everyone’s festive family gatherings around a table overflowing with food and drink. I post my own. This is living! So much to be thankful for! Yes to all of this, all of this is true and good and right and worth celebrating. My email box is alerting me left and right to all the products I didn’t know I needed, all the sales I can’t miss! They offer me an even greater life than what I had this year. My skin can look even more flawless in next year’s picture, my outfit more flattering, my cookware more perfect, my home more post-worthy!
I’m sitting in the car in the hospital’s parking garage, and note the time. I turn off my phone, enter the hospital, and clock into work. I go into my patient’s room, and I’m startled by how he looks half-dead. His skin is unnaturally yellow, his hair patchy and disheveled, his mouth full of sores and blood clots. He hunches over a puke bag and retches deeply, gutturally, working with all his limited might to clear the perpetual blood clots from his throat. He spits, sighs, and lays back on the bed, and falls asleep almost immediately. He is barely conscious, but responding more than he was on the previous shift, which is what we all want.
I gaze at him and look for the hint of the healthy 15-year old he was before the cancer came. Before the chemotherapy ravaged not only the cancer cells but his whole body as well, and left him teetering on the edge of this cliff. His friend comes to his hospital room to visit and manages to elicit a weak smile, a chuckle, a two-second light in his eyes before he lays his head back and falls asleep again. I am grateful for this momentary glimpse of who he is, or was? We are somewhere unsure on that timeline between is and was, but doing all we can to keep him here, now, as long as we are able.
Mid-afternoon, he sits up suddenly in bed and I see one leg drop off the front corner of the bed. His left hand has gotten a grip on a handful of his IV lines and I run into the room. He’d tried to pull them out the night before, and this is his first attempt on my shift.
“Friend, you can’t pull those out!” I try to catch the alarm in my own voice before it tips the precarious emotional balance I see him fighting for.
“Please…let go. Those are to help you try and get better. If you pull those out, it’s going to hurt you so much.”
His right hand clenches into a fist and I instinctively take a half step back, though I need to still stay close enough to try and keep him safe from himself. I don’t know exactly how to keep both him and me safe at the same time. I am on edge and pray for wisdom.
His right hand bangs down on the side rail and his father yells, “No, son! You CAN’T DO THAT. NO.”
Rage burns in his eyes. He is heaving with desperate, lost, lonely frustration. He looks at the sole window in his room. “Why can’t I just go??”
“I wish you could go home too. We are trying to help you get better so you can go home…”
His head slowly weaves back and forth, his breathing heavy, his eyes wild.
“FUUUUUUUCKKKKK THIS SUCKS!!!!!”
He glares at me suddenly and his right hand again clenches into a fist. I want to leave the room. I can’t leave. God, give me wisdom. I stay quiet. He doesn’t throw a punch.
For two hours, we do this delicate dance. He rages, I step just close enough, then step back. A coworker has quietly entered the room to support me and I find moments to text our nurse practitioners and physicians for sedative options that can keep us all safer but still allow us to get a true sense of the patient’s neurological status.
Finally, after two tense hours and some mild medication on board, he settles. I catch up on my charting outside the room, and try to settle as well. I’ve seen a lot of suffering in our unit, but this patient, he rattles me. He’s too aware of his misery, of the aloneness and intensity and unfairness of it all. Just one year ago, he was enjoying a Thanksgiving just like mine. F*ck, this sucks.
Sunday, November 27
I’m at church with my family like I am every Sunday.
The sanctuary and stage are beautifully decorated with garlands twinkling with white lights. Songs proclaim joyful, joyful, we adore Thee! The preacher preaches about God being for us, giving us everything we need for life and love.
I know there are truths here for those who can go deep in understanding about why we proclaim joy, why we adore Him, why we say amen in response to the preacher’s words. The preacher isn’t preaching a prosperity gospel. I know he knows complicated nuance, but doesn’t have time in one sermon to break down the particularities. But because we can’t get into all the nuances in just one sermon, I ache with a deep and confusing gap as intense scenes from my time with yesterday’s patient come to mind. What about him, God? How does anyone summon joy, adoration and an amen from this young man who writhes in the throes of unimaginable suffering, yellowed in eyes, bloodied in mouth, ravaged with illness from head to toe?
I can proclaim joy and adoration when my online cart is full of great deals for my next amazing outfit and those impressive home goods I’ve been coveting. I can proclaim joy and adoration when my stomach is still full from the richness of Thanksgiving feast leftovers. What about the patient who roars at me when I tell him he cannot have a sip of water for his bloodied mouth, doctor’s orders?
The gap is tearing my heart apart, and I struggle to know where I am. Am I at church, living my best life now? Or am I in a fantasy world while my patient is the one who knows true, hard reality?
Jesus, it’s You who bridges this gap. Sweet babe in a manger, a bright star and angels proclaiming Your glory, o come let us adore Him. You go from this place to the solitary misery of the cross, beaten and bloodied, no Father nearby to renew the light in Your eyes. You connect the brightest glory with the darkest grief. You encompass it all, bear the beauty and wonder and misery and tragedy of it all. You are the only One who can do this, and promise one day there will be redemption for all the suffering and pain.
Monday, November 28
I return to work, Monday being my other consistent work day.
I am assigned to a little girl, same age as my own child. She bears striking similarities to my daughter, in her demeanor, her interests, her kindness, her almost casual acceptance of less than ideal circumstances.
She has the same cancer as Saturday’s patient, but she is much earlier in her disease process. Still, her road has already been rough, and my heart sinks with weight as I consider the days ahead for her.
We talk about Roblox and I show her videos of my dog, as I administer a harsh drug and watch her closely for how she tolerates it. I give her permission to boop my nose if she feels crummy. She smiles and I want to take her home, away from this awful hospital life. When my shift ends, she’s feeling ok and I tell her to boop my nose, just because. Shyly, she taps my nose with her index, and I tap hers. I tell her it’s been the greatest privilege to meet her and spend the day with her. She is bright glory and dark grief.
I go home, hug my children, weep and worship.
Jesus, we ache and groan. You in Your greatest glory, come and meet us in our lowest grief. We ache and groan for You.
6 thoughts on “The Chasm Between Holiday Glory and Hospital Grief”
The paradox of caring for seriously ill children so beautifully, painfully, lovingly written. Thank you!
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Thank you, Joanne!
Your post is exactly what I need to read, I will be retiring in February 2023 after being a nurse for 48 treats! Most of that time has been spent in
PEDI and PICU. I treasure every moment of blessings I have been given. Each child, each framily, each colleague has been a gift in one way or another . I have done the dance for years……. the dance you mentioned . I have been filled with joy, with heartbreak, with confusion and with anger. I have also been blessed with having other nurses who, from the get go , taught me detachment so I could remain professional. It has made me a far better nurse. I am also grateful to them for telling me that detachment does not mean not having feelings My faith has carried me through. In all these years of nursing I have come across only one other nurse who has shared her faith with me. So, here you are blessing me with a final, faith-filled desctiption of what all of these years have meant to me. Thank you to God and Alina…. I can leave the love of my life, knowing you are out there. From my heart or hearts – thank you.
P. S. I am working on Christmas. And, there is
no place i would rather be!!💖💖💖
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Oh Mary Ellen, there is no way for me to describe to you how timely your word of encouragement is to me. Thank you for all you have done for every single one of your patients in the last 48 years, and surely for your colleagues who I have no doubt you have been a great blessing to. The Lord is so kind to us and is truly our Rock and Refuge. Congratulations on your well-deserved retirement, and I’m wishing a very Merry (early) Christmas and an incredible new year! xoxoxo
Stay strong. There are many difficult days
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