What I Didn't Want to Hear When I Was Grieving
Confessions from a Medical Mom Turned Bereaved Mom
The longer I spend on social media the more I recognize that many people don’t embody the one thing we all learned in kindergarten: if you don’t have anything nice to say, don’t say anything at all.
And even fewer people learned what my father taught me, which was: if you don’t know what to say, don’t say anything. It was usually followed quickly by: if you don’t know, you don’t know. To be honest, I still struggle with that one myself.
We all want to fill the silence—it makes us uncomfortable. And few things make us more uncomfortable than grief.
So at the risk of making everybody uncomfortable who doesn’t already know our story…
I’m a bereaved mother. I lost a child…while I was pregnant with another.
My daughter, Marsaili, was diagnosed with several medical complications before she was even born. After birth, Lissencephaly and intractable epilepsy were the two diagnoses that shaped her life most profoundly. Complications resulting from both ultimately resulted in us saying goodbye to her far too soon.
About a month before she passed, we received results to genetic testing that finally discovered her complications were the result of a new and very rare recessively linked disorder. By that time, I was already pregnant again.
In just a few short years, a healthy pregnancy turned into a complicated one. That pregnancy became a fight for her life and for mine. I gave birth to Marsaili, and for the next 22 months, we lived between the hospital and home, doing our best to find joy between the alarms, seizures, and scares. We celebrated every milestone, every memory, every moment we were given, until it was time to say goodbye.
After she died, we grieved as a family (her six-year-old brother included) and tried to hold on to hope as we awaited the birth of her baby sister.
That’s a lot. And most people don’t know what to say when they first hear our story. We get it.
But there are some things worth talking about. Over the years, there were words spoken to us that didn’t exactly help. They were meant to comfort, and with time I’ve come to see that intention does matter, but impact matters, too.
I’m not trying to rage-bait here or call people out. This post is about calling people up, especially fellow Christians. I don’t want anyone to feel shamed or defeated. I want you to feel empowered to love better, to speak more gently, to bear with people more patiently. The words we speak to one another matter. They hold the power to be life-giving, or to compound the suffering of those we love.
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The Problem with Platitudes
I often wonder how it is that so many Christians seem to have the same list of grief platitudes stored away in their brains. I don’t ever remember a Sunday School lesson on this, so it must just be our shared human instinct—to reach for something, anything, that sounds hopeful when the silence feels unbearable.
But in our rush to fix discomfort, we sometimes choose words that wound instead of heal.
There are plenty of these floating around, but two of my least favorites are:
“This too shall pass” and
“Everything happens for a reason.”
Here’s the thing about these platitudes and others like them: the issue isn’t that they lack truth. Yes, sometimes they are only half truths, but most of them have some truth woven in somewhere. The problem is that in the deepest depths of grief, our perspectives shift. Let me give you an example.
I wouldn’t change anything about our journey with Marsaili. Not a thing. She was never a burden. I would be lying, though, if I said that the journey wasn’t challenging. It’s one of the hardest seasons of life I’ve ever walked through. And when we would share some of the challenges we were facing during that season, some people said to us: “This, too, shall pass.”
Yes, this was true. We knew we would not be in this season forever. You know why? Because Marsaili’s condition was terminal.
We knew that the season of life we were in would pass when she did. So being reminded of that wasn’t a comfort. It was terrifying. We hated thinking about the day when she would no longer be with us.
In other contexts, being reminded “this, too, shall pass” might be helpful. When I was grieving high school breakups, for example, or when my oldest was going through a sleep regression for the entire first year of his life. Being reminded that those phases of hardship weren’t permanent was necessary sometimes. Because they weren’t permanent. And when grief tempts us to believe otherwise, we need that reminder.
But that wasn’t the case with our struggles with Marsaili. We didn’t lack perspective. We had plenty.
In a similar fashion, we didn’t need to be reminded of God’s sovereignty—at least not with a shallow “everything happens for a reason.” We knew the God we believed in. He was and is a good God even when circumstances downright suck. We knew that Marsaili had been created for great purpose, that we had been created for great purpose. We knew that God would not waste any ounce of the joy or suffering we experienced.
But hearing “everything happens for a reason,” just falls flat. It feels dismissive and shallow. It fails to acknowledge the genuine pain people are experiencing and then also leaves them hanging.
“WHAT WAS THE REASON?!”
What we needed most during those times of deep waters wasn’t a catchy phrase or a theological soundbite. We needed people to sit with us in the mess, to acknowledge the horror and the heartbreak, and to be present without trying to fix it.
Platitudes like “this too shall pass” or “everything happens for a reason” might be true in some contexts. But grief isn’t just context bubble. It’s a lifelong landscape we are forced to live in and navigate. It never disappears, even when the scenery changes. When you are living in that, the last thing you need is someone trying to speed up the journey or point out the scenic view.
No, I don’t want to think about the rainbow right now, because right now there’s a tornado outside my house and my roof is collapsing. I will appreciate the rainbow and all of its beauty when it’s here, and I’ll still be picking up my house. Will you be there with me?
In the end, the most life-giving words are often the simplest: I see your pain. I am here. You are not alone.
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Spiritual Misfires
I have a fairly gentle spirit. My default settings are not spicy. But nothing will get my blood boiling faster than hoity-toity brothers and sisters in Christ shouting accusations and blame toward people who are suffering.
This is an impulse that goes all the way back to ancient stories like the story of Job. It’s challenging for us to imagine that God could allow or ordain any kind of suffering, so we assign a negative spiritual or emotional cause to any pain or hardship experienced. We witnessed this when we first announced that the doctors had discovered Marsaili’s complications in utero. We asked for prayers, and instead, we got comments like:
“You Need Deliverance” and
“You Got Vaccinated, Didn’t You?”
“Well, if you believe God created her that way, then you’ll get what you get.”
And no…I’m not joking. I wish I was.
I’ve come to understand over time that this impulse is driven by our flesh’s need to control what we cannot comprehend. Control is a fear-based response, so when people are faced with things they can’t understand, they resort to control. If they can just attach some spiritual cause to the suffering, then maybe, just maybe they can fix it with a session of speaking in tongues, avoiding vaccinations, and blame shifting.
Most of the time when I speak on God’s sovereignty in our own journey, people who disagree with me seem to believe that I’m saying His sovereignty somehow explains away the pain, but it doesn’t. Understanding that God holds everything within His hands helps to remind me that He holds us, too. It reminds me that nothing goes unseen or left to dry up without purpose.
I didn’t need to go and be “delivered” to heal Marsaili. I didn’t need to be shamed for vaccines I may or may not have received. I didn’t need or deserve to be blamed for my daughter being born with a life-limiting condition. What I needed was to be reminded that the God who knitted me together in my mother’s womb, knitted Marsaili’s in my own. He knew her name long before I did, and He held her closely in His hands.
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Misguided Fixes
Social media is an interesting paradox. I have met some of my closest friends through social media. In many ways, it allows us to feel more connected than ever before. And yet, in many ways, it causes us to feel even more alone during challenging seasons.
One of the very first recommendations I got when we received Marsaili’s Lissencephaly and epilepsy diagnoses was to join Facebook groups. Y’all, there are Facebook groups for literally everything under the sun. And there are multiple groups for each of these conditions.
Looking for research foundations?
There’s a group for that.
Looking for more natural medication options?
There’s a group for that.
Looking for help with more general questions, or genetic testing, or doctor recommendations?
There’s a group for that.
It’s overwhelming, and I quickly exited those groups. I rarely went to them for guidance.
I think this solution is one that was well-intended, but the thing about our journey is that it was so incredibly rare. It was so different. Her specific type of epilepsy and Lissencephaly were not what most people experienced. Later we realized that this was because of the underlying genetic condition that caused both of those complications, but even trying to connect with other people who had children with her specific disorder was impossible. I’ve only met one other family with a child with Marsaili’s disorder. And they live 4,000 miles away.
I think if we aren’t careful, recommending groups like this or other similar quick solutions can feel transactional and impersonal. They can especially feel that way if someone is telling us this in person. Like…friend…I don’t want another virtual group chat. Can you just be here with me?
Some of the best conversations and support I received were from Marsaili’s therapists and other friends in our community who had medically complex children. Even though they weren’t walking in our exact shoes, they knew what it meant to us to just have people to talk to who really did get it. They were willing to laugh with us, to cry with us, to brainstorm with us, and to just sit and be present. That was more meaningful and helpful than any online group could ever be.
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I Didn’t Even Know What I Needed
The best support was often like that…support offered when I didn’t even know that I needed it. People often asked us:
“When are you free?” and
“What do you need?”
And I felt awful when I had no idea how to respond. I was too tired. My brain was too occupied with everything else I had to do just to survive. It was rare that I could think past breakfast, much less when I was free days or weeks from the present moment. When our hearts are in survival mode, even these tender questions can feel heavy.
When Marsaili was alive, good days could take a sharp turn in a matter of moments. After she died, I was barely functioning. Pregnancy hormones and grief exhaustion made it impossible for me to do anything other than eat, sleep, and sleep some more. The world felt foreign. After years of drowning in decision fatigue, my days were so quiet. I escaped into sleep just so I wouldn’t have to make any decisions.
The most helpful things people did in these stages were organized without me knowing about them or without giving me room to coordinate it. That sounds odd, but truthfully it was a breath of fresh air to just say, “yes, thank you” rather than try to organize one more thing.
Right after my anatomy scan with Marsaili, we were still in shock that she had so many complications. One of Josh’s best friends called to tell us that he was driving up from Atlanta and to be ready to eat when he got there. He cooked us homemade chicken alfredo. He stayed with us until well after Liam’s bedtime. And he made sure the leftovers were put away in the fridge.
During a hospital stay, I had some dear friends from physical therapy school message me and say, “What food do you like? We’re bringing you dinner.” Other than telling them my Chipotle order and telling our nurse to put them on the guest list, I didn’t have to think or plan that visit. And they just sat and ate with us for as long as we needed.
After Marsaili passed, two of my close friends told me they were helping with the service to take some of the organization off my plate. And they weren’t taking no for an answer. They worked with some of our church staff to make sure all of the food and tables were set up for a family meal after Marsaili’s service. I didn’t have to lift a finger.
These acts of kindness and so many others made the days more than just survival—they were life rafts of joy in an ocean of grief. When people are suffering, and they don’t know how to tell you when they’re free or how you can help, it isn’t a lack of gratitude. It’s exhaustion. They don’t need more decisions to make. They need someone to say:
“Hey, I’m coming over to do your dishes. What’s your Starbucks order?”
“I’m coming by in 30 minutes. Do you need a shower? I’ll hold the baby.”
“Dinner’s on your porch. Don’t you dare Venmo me.”
Grief and crisis don’t make you articulate. They make you small and quiet. People who are suffering don’t need someone to ask what they need. They need someone to see them. They need to be seen and to have someone willing to see what’s missing and fill in the gap.
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The Cruel and the Unthinkable
Speaking of social media…one of the unique things about online platforms is the way in which people can say the most wretched things imaginable because they say them from the safety of a screen. I do try very hard not to let these kinds of comments “get to me,” and most of the time I block people who post nasty comments. But the thing that really grieves my spirit is that somebody typed these words. They didn’t just appear out of nowhere. (Barring discussions and rabbit holes about AI) these comments come from the hearts of other human beings. And I just have such a hard time being able to fathom how a person could be in so much personal pain that they spew so much hatred toward another person.
Multiple times I was shamed for not terminating my pregnancy with Marsaili. Multiple times people called me selfish for choosing to give her life, to fight for her. People even shamed me for getting pregnant again, and then some proceeded to ask if Brielle was a “replacement baby.” As if Marsaili could be replaced.
These comments demonstrate to me just how little regard people have for the sanctity of life. And that breaks my soul. Every other uncomfortable thing I’ve mentioned here that people have said is just that—uncomfortable. It makes me squirm and sometimes makes me frustrated or even righteously angry. But these words make me grieve more deeply because of the darkness they reveal in the hearts of those around us. To them, my children are nothing. They are not seen as human beings, but as inconveniences.
And while I know that this is a lie. While I know that their lives are sacred. While I know that they are loved by a gracious God who sees them for the magnificent and wonderful souls that they are…I grieve the fact that they are growing up in a world that doesn’t view them the same way. My only hope is found in the truth that God created them with great purpose. He entrusted me with them. And I pray daily that the good work I do will instill values within them that will enable them to change the reality of that darkness.
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The Heart of It All
Grief has a way of exposing us. Those of us who have walked through periods of deep grief are very familiar with the way grief exposes the most vulnerable parts of ourselves. But grief also exposes things about those observing our grief from the outside. It exposes what we misunderstand about God—the cracks in our theology—and what we misunderstand about one another.
No sentence ever saved a soul from sorrow. But the presence of the Holy Spirit has. And that’s a challenging thing for us to remember much of the time. We cannot replace the power of God’s presence with formulas and quick fixes. When the Word became flesh and dwelt among us, He didn’t offer platitudes. He offered Himself.
People don’t need better answers. They don’t need pretty words. They need hands willing to do the heavy lifting, ears willing to listen for understanding rather than response, and hearts willing to brave the tension and the pain—to bear with us.
It is not our job to explain the suffering away. When we show up in love, in humility, and in presence, we become living reminders of the gospel we claim to believe: that God entered our sorrow, bore our pain, and remains with us still.
“Love one another with brotherly affection. Outdo one another in showing honor. Do not be slothful in zeal, be fervent in spirit, serve the Lord. Rejoice in hope, be patient in tribulation, be constant in prayer. Contribute to the needs of the saints and seek to show hospitality.
Bless those who persecute you; bless and do not curse them. Rejoice with those who rejoice, weep with those who weep.”
Romans 12:10-15 ESV
Something new is coming!
This essay will also be my first read-aloud post on my upcoming podcast. I’ll be recording it soon, so if you’d liked to hear this one in my own voice, stay tuned for that episode to be released soon.
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Thank you for sharing. As a bereaved mother your article resonated with me. People have said the wrong things to me. Now that my daughter Alix has been dead nine years it bothers me that people say nothing about her. They erase her. I say her name and bring her up often to keep her alive and present.