Words on caring for one another well, following a traumatic diagnosis.
from a medical mom + hospital chaplain-in-training
So, today’s post is a little bit different than what I typically share in this space. Recently I was asked to write about ways to effectively support families through a diagnosis from a Christian perspective. Admittedly, the resources are sparse. But between all of the kids’ hospitalizations and illnesses, one of the biggest encouragements for us is the way that our community has showed up to support us not just once, but over and over. And while our family has experienced more than our fair share of traumatic diagnoses, I’ll admit writing this now is timely, because the newest hard news is still painfully fresh.
So, I want to share a glimpse of what’s been going through my mind this week and offer a few suggestions for anyone who provides or coordinates care for those that they love. If you are someone who loves and cares for people through diagnoses and medical traumas, this post is for you. If you have a family member that’s recently been given hard news, or a friend that is struggling, I hope you’ll keep reading. And if not, I hope you’ll save this and revisit it when the time comes. As both a parent of multiple medically fragile patients and a hospital chaplain-in-training, I am trained in trauma-informed & person-centered crisis counseling and armed with a full toolbox of tools. But not all tools are created equal, and I’d like to share what has been personally helpful, as someone who is, albeit wobbly at times, towing both sides of the line.
I was afraid to open my laptop and write about it, because truthfully my brain has been terribly clouded, and I’ve been unsure what might wind up on the screen.
I was afraid. Because earlier I bulldozed straight through that solid red light, and an oncoming vehicle attempting to turn left should have smashed right into me, but they didn’t.
I was afraid because I lost my phone in the fridge for three hours.
I ran the same load of laundry over and over and over.
My brain doesn’t feel like my brain and my body doesn’t feel like my body.
Trauma alters our brains, and the trauma of this present moment is like a scratch on a compact disc that skips in the same spot, over and over, loudly reminding me of its presence.
Driving home from our neurosurgery appointment earlier this week, it took every ounce of strength I could conjure not to let my voice change in pitch as I managed to hold a casual conversation with my 11 year old daughter. I blinked at least one thousand times in an effort to prevent the tears from welling in the corners of my eyes. And by the time I dropped her off at her school, completed those final three stoplights to my youngest’s school, and shuffled my five-year-old into her pre-k classroom 30 minutes late, no amount of blinking or sniffing could stop the tsunami of emotions. I opened my mouth to say “see you later” to her teacher, but I couldn’t say it. I opened my mouth, but my voice felt stolen. Nothing came out of my mouth. My breath couldn’t form words. Tears streamed down my cheeks instead.
Her teacher knew. She knows what our family has been through, and somehow by the grace of God, she has experience with this diagnosis too, its ups and its downs. She teared up too, but not with vague sympathy teers. Her tears were extremely specific tears. She knows these tears too. Rushing over, she gently grasped my hand. She offered to listen. But I still couldn’t speak. So, she stood with me. Her grip was tender, but strong. Assuring. Safe. She didn’t rush me. She made space for me as my gaze wandered from her shoes to my daughter, to other corners of the classrooms.
But when my gaze returned to finally look her in the eyes, all I could see was the same sorrowful disposition that donned the doctor’s face an hour earlier.
— — —
Taking a deep breath, “What am I going to do with you?” he always asks her. The neurosurgeon repeated himself and look at my child intently.
“I don’t want to do surgery again” she scolded him matter-of-factly.
“I don’t want to either. But we might have to.” He confessed. “Let’s see what the new pictures say—”
“I don’t want to do surgery- She restates. Not angry. Not scared. But all 53 lbs. of her were crystal clear.
Following a brief sigh, she turned her attention from his face to mine “Can I get a Frappuccino? Will I make it back to school in time for my class ice cream party.”
“Why are you so excited about frozen treats when its practically an arctic tundra outside?” I attempt to quip.
She shrugs.
“Yes. And yes.” I respond, unable to say much else.
Glancing over at the doctor, I whisper a disappointed “thank you.”
— — —
That’s how I do it. I thought to myself. That’s how I make words come out of my mouth. I shook off the haziness of the morning’s memory. “Thank you” I whispered to the teacher, before hurrying back to my car, praying that I didn’t have to see anyone else.
The scene between my daughter and her doctor replayed in my brain over and over and over.
It’s been three days since then. I’ve attempted to smudge the skip, breathe on it, wipe it… And while I can make sentences, I can feel the skip compensating. Its looking for other ways to be noisy, and I don’t feel like myself.
In whatever way the scratch on the disc manifests, I try so hard to pretend that I can still function as usual. But I’m struggling.
I know Brooklyn’s teacher was talking to me as she stroked my hand. I’m sure she was saying beautiful, comforting, assuring things. But all I could hear was white noise.
I’m sharing this because often times when there is a very traumatic diagnosis, even if it’s not a new one, priority number one, is to mask all of this mind mess. And because sometimes we’re better at it than others, we forget that medical crises are in fact a trauma, in need of trauma-informed triage.
To that end, here are a few thoughts for care providers and communities to empower them as they care for families like mine.
1- First, let silence be silent.
In most of my pastoral counseling resources, the first piece of advice is for the person who is there to offer comfort to “listen rather than speak.” Now, while this is exponentially better than pontificating/ lecturing/ preaching at a suffering individual, it’s incomplete advice. Because the person in the counseling role has been taught to listen, they then at times they risk expecting the other person to do all the talking. But so often, we can’t. We’re unable to form coherent thoughts and words. We can’t manage the conversation. Answering superficial questions feels avoidant and meaningless. Responding to invasive questions feels offensive and selfish, like the care-provider is more interested in the information about me or my child or the overall situation than me as a person— and yes this includes prayer requests. Information is not a prerequisite for intercession, and reducing prayer to a transaction between the vulnerability of a sufferer and the curiosity of a person that refuses to pray without first gathering all of the facts reinforces a dangerous power dynamic in western evangelicalism that compromises the safety & agency of the sufferer. And deep theological thoughts? Those are exhausting; an arduous chore.
Often the biggest obstacles that the caring person needs to overcome as they seek to care for others well is their own discomfort with silence.
Care providers don’t need to center in to a suffering family’s space armed with well-rehearsed theories on theodicy or philosophy. They don’t need to have a response ready at all. There’s no need to rehearse a perfect sounding prayer, because ministering through presence primarily involves meeting a suffering person, with humanity, not words.
And even though earlier this week I couldn’t hear the teacher’s words, I experienced her presence. Her fingers helped me remember that I have fingers, and a body, and am a whole person, even when I feel so very fragmented.
If we genuinely want to minister to one another well, as conduits of safety and comfort, presence and silence have the ability to turn that monstrous white noise into a bearable lullaby, even if it’s only for a brief moment, so that the sufferer can catch their breath. Please if you can give someone that breath, I promise it’s more meaningful than almost anything else you can offer in that moment. And to the folks that might argue “but what about evangelizing?” or “what about sharing a testimony or offering hope?” I’d respond by saying that when Jesus first came to humanity by means of the incarnation, his infancy reminds us that before he could teach us anything, or comfort us with words, God with us came to us with his wailing presence- his tears. Often that desire to “evangelize” says more about our desire to control the situation on our own terms than our willingness to be sensitive to Christ’s compassionate Spirit and prioritize presence for one another. And again, this is not exhaustive. There is nuance. But putting the other person first doesn’t just involve shutting our mouths so that they can speak, out of courtesy— it’s bearing the silence with them.
2- Next, designate a point person.
This suggestion is more pragmatic, and primarily for a community of people who are providing lay care. I am going to say this once, but I hope it’s clear. Questions, even really well-meaning questions with the best of intentions often feel overwhelming. Inadvertently they can also wind up centering the questioner’s feelings rather than the sufferer’s needs, even if there are really big needs. We should not want this for each other. Naturally, caregivers and care providers and loved ones want to help. This is a compassionate response when loved ones are going through challenges. Friends and family rallying to support one another is lovely. There are tangible needs that need to be met and real people that want to meet them. But if you are that suffering person/primary caregiver and you are utterly overwhelmed with the offers of support ( or don’t know where to begin), designate a point person that can manage those things for you. Instead of figuring out when someone can bring you a meal and where they’re going to deliver it and coordinating logistics (do you see where I’m going here?), direct all care inquiries to a single designated person.
For many years, that person was the wife of one of the pastors at our church. For our current situation, it’s a dear friend. It could be a Sunday school class teacher, a small group leader, a coworker or an elementary school counselor. Whenever someone asks how they can help, direct them to your point person. Sometimes that individual will set up a sign-up genius to coordinate pet care or a meal train when the family is split between home and hospital. From prayer lists to carpool to groceries, if it’s a need, it matters. Even if you don’t think you need a point person, even if you don’t want any help, even if you don’t want to give mass updates or coordinate any care, designate someone just in case.
And for those of you caring for your loved ones, trying to figure out how to best lend support, if you don’t want to go through that designated person, then don’t ask, do. Lighten the load without asking a million questions. *Here’s what I mean.*
Instead of asking “Can I bring you a meal?” just send the uber eats or Instacart gift card. Venmo them money and in the notes write “for anything that pops up.” Send a care package (their point person will have the address, and room number 😊). If you want to do anything that requires asking a question, then you go to the point person. If you want to show love out of compassion, honor that persons limited capacity rather than adding to their mental load. Just do the thing. And if that person doesn’t have a point person, offer to be the point person. Does that sound like too much? Or like it might be overwhelming? If so, please remember that if this person doesn’t have a point person, the point person is them, whether they realize it or not. Answering the texts. Responding to emails. Doing all the things… Lighten the load by lightening the mental load.
3- Lastly, bite sized truth.
This suggestion is geared towards care providers. If you are caring for sufferers from a place of theological or moral authority (counselor, therapist, pastor, chaplain, elder, deacon, etc), and the individual is searching for answers to tough questions, it’s ok to say, “I don’t know.” Once again, there is often a desire to answer unanswerable questions that stems from our own discomfort with life’s mysteries and complexities. Resist the urge to theologize or hyper-spiritualize. Avoid trite tropes. This moment isn’t the time to say things like “everything happens for a reason” or “God works all thing out for good.” Twisting scripture out of context is always dangerous, but it can be downright damaging in the context of death, grief, and suffering. So, what types of bite-sized truth can help instead of hurt?
“I don’t know, but I am here, let’s breathe together.”
“Breaths are prayers too.”
“God is with us. God is close.”
“You can be honest.”
“This is hard.”
“I love you.”
“I’m not going anywhere.”
Focus on tangible truths and true things about God that can aid the person in grounding them in their headspace in that present moment. Because when our minds are spiraling, overwhelmed with “what ifs” and “what nows,” presence and intentional care goes a long way.
Ultimately, we belong to one another, and how we belong to one another in times of crisis matters. I’m not saying these tips work in all situations. Once again, nuance. This is by no means exhaustive list. But you’ve found this helpful, I may do a follow up when I have the bandwidth for it, because there really is so much more to say. And if you’ve been cared for well and have suggestions for other folks who are supporting their loved ones in hard seasons or serving in a caring profession, please share those in the comments.
I wrote this because my community has taught me what it means to care for others well, by caring for us SO incredibly well over the years. And yes, I know that we are immeasurably blessed to even have a community willing to care for us through our frequent medical traumas. Not everyone has a support system to lean on. I hate that. That’s my why. That’s why I’m training to be a pediatric hospital chaplain. Because everyone who craves care when their family is going something really hard should have access to quality spiritual care- especially in crisis.
But mostly I just want to empower readers today to show up for one another. Say yes. Be a safe person. Prioritize presence. Bear one another’s burdens well and lighten loads because that’s what love looks like. Look for ways to belong to one another well. Look for ways to show compassion that centers the sufferer. Look for ways to identify with sufferers. This is the most Christian Christian response. Be present for one another, be human with one another.
And selfishly yes, our family does covet prayer in the coming weeks and months as we navigate our own path forward. But God is close. And God is good. A testimony of his goodness is that I know our people will take good care of us in this season, just as they have so many times before. Grateful is an understatement.
Liz