The Trauma of Child Loss
What grieving parents want you to know
When you lose a child, you enter a deep void of despair, a haunting, lonely place you never planned to go and one you wish you could leave. As you journey through unfamiliar terrain, you may seek refuge from your pain in different ways – from isolation and avoidance to addiction and self-harm.
To continue our ongoing series, Surviving and Thriving After Trauma, John talks to Kari Kaczan about her journey of grief after losing her son, Christopher, and the way God showed up in her darkest moments. Kari shares her heartbreaking yet hope-filled story of Christopher’s diagnosis with metachromatic leukodystrophy (MLD), a rare terminal disease, and the emotional and spiritual challenges that followed.
Listen in as John and Kari discuss:
The devastating reality of receiving a terminal diagnosis for a child
How grief unfolds in layers over time
The emotional and relational impact of loss
The importance of honest prayers—even if they include shouting at God
How bringing Jesus into suffering can transform the way we endure pain
After listening, you’ll better understand the power of surrender, how to bring Jesus into your suffering, the way grief impacts relationships, and how God can use your experience to minister to others.
Highlights from John’s Conversation with Kari
John: Kari, welcome to With You in the Weeds. Can you tell us a little bit about yourself?
Kari: I am the wife to my amazing husband, Daryl. I am a mom to 9 children (3 of my own, one of which is in heaven; 4 stepchildren; 1 step-daughter-in-law; and an adopted son with special needs). I’m also a volunteer with our church’s grief ministry and I’ve written a book about my grief journey called A Light in Momentary Affliction.
John: The topic we're dealing with today is the death of a child but also the trauma of death in general. You have a lot of personal experience with this. Every week, you sit with grieving people who have suffered intense loss. You provide in-home healthcare for the elderly as a profession. So you have been around a lot of suffering. Can you tell us your story?
Kari: My experience with grief began when I had my third child, Christopher, at the end of November 2005. He was born totally happy and healthy and hit all of his major milestones all the way up until about 15 months. I noticed that he was walking with his arms out, like he was trying to keep his balance. I thought that was odd, but I just kept an eye on it. He had a well child visit coming up in a couple of months and so I thought we’d address it there, but by that time, he was falling over regularly.
I talked to his pediatrician about it and ended up going and seeing a specialist. They had no idea what was wrong. They sent us to a pediatric orthopedic doctor a few hours away from us. In between March 2007 and December 2007, Christopher lost his ability to walk. The only way that he could walk was us holding his hands, and so his legs were kind of hourglass shaped, hyperflex backwards at his knees. I knew something was wrong, but I just thought it was his legs.
When we went to see the orthopedic doctor, she threw us for a loop when she said, “No, it's nothing to do with his legs. You need to see a neurologist.” We drove five hours to see the neurologist. Before they did the MRI, the doctor looked me right in the eye and said, "I don't think it's anything that you have to worry about.”
I went to bed that night thinking everything was great. The next morning, I was pumped to go in there. The nurse was supposed to give us the results. I'm sitting there with Christopher in my lap. The nurse is talking and she's not giving us the results. My stomach dropped. I knew something was wrong.
Then she said the words no parent wants to hear, “The doctor will be in in a moment to speak with you.” And I just knew at that point, like my world was about to shatter and I didn't even know why. When the doctor entered his eyes locked on mine. He did not break contact the whole time that he walked across the room. He sat in front of me and said, “I'm sorry, your son has a leukodystrophy.”
That word was foreign to me. I had no idea what it meant. And in my naivete at the time, all I could ask about was whether Christopher would be in a wheelchair for the rest of his life. The doctor said yes, and that he would be on a feeding tube as well. In that moment, I couldn't understand the magnitude of what he was saying. All I knew was that it was bad. I immediately broke down, hugged my son tighter, and grieved for something that I didn't even know was coming.
Christopher was two years and two months when he was diagnosed, and he only lived till three years old. We didn’t have much time. It rocked my world. I had no idea what to expect. This was all new territory. It was a rare disease – there were only 200 cases in the world.
John: Now you’re part of a club that no one wants to join and feeling very alone at this point. I’ve learned that God did not design us for loss. When it comes, our brain scrambles to put it into a category and can’t. We go into shock trying to find a place to put grief. Was that what you went through?
Kari: Yes. There was the initial momentary shock when I realized the gravity of our situation, but almost immediately I slid off the chair and dropped to my knees and wailed in grief. In that moment I knew that my life was going to change forever. I just didn't know what it was going to look like.
John: So everything's impacted. You're hypervigilant in caring for him. You can't communicate to him what's happening. You're watching an innocent little person who has no life experience, who has no idea what's happening or going to happen, but you know. Are there words for that?
Kari: No, I don't know that there are words to adequately describe the depth of grief that a parent feels when they're watching their child struggle. One of the hardest things was seeing a healthy, walking, talking, smart toddler lose everything he gained. It wasn't just a huge loss of losing him when he passed away, it was all these little losses that compounded every single time I turned around.
John: Let me ask you this question. You could not communicate to him what he was experiencing because he's two and a half at this point. Was that harder, do you think? Or would it have been easier if he were, let's say, 10 and you could explain to him what was happening?
Kari: I think it's a little bit of a mercy that he was so little and didn't understand. I took on emotions for him, which any mother would in that situation. With a 10-year-old and up, they understand what is happening to them. I think it’s harder for a parent to watch them hurting.
John: Some people think that when we say we fall back on Jesus, they think that’s ‘nothing’. But the Christian belief is not to ‘just have faith’. It’s to fall into the arms of someone who experienced suffering and death. Sometimes that’s our only comfort: Jesus, you are with me, and you get this. Did you experience that?
Kari: If I didn't have my faith, I don't know that I would have made it. I don't know how you can experience something like that and not have something to keep you grounded. My faith was that for me.
Even in the darkest moments, all I had to do was cry out to Jesus. Whether I felt him in that moment or not, I knew he was there. If I didn't have that, I probably would have succumbed to alcohol or something not healthy to cope. Something to block out the pain. Something to numb it.
John: Can I ask what you found yourself turning to in your humanness?
Kari: I had struggled with depression before all of this had even started. I came to the Lord in my depression. So for me, depression was a black hole that was always calling my name.
John: I like the way you put that.
Kari: That's what it is. It sucks you into complete darkness and everything around you seems dark and just dreary. That was the thing that called me in the darkest moments, like, hey, come into the black hole where you can just sit in your grief and pain. You don't have to put one foot in front of the other. You can just numb out.
John: How did you find yourself taking steps to move out of that the first time?
Kari: I came to the Lord after dealing with it for three years. When I finally hit rock bottom, I cried out to Jesus with complete surrender of my life. I laid it at his feet, and he miraculously took it away from me that night. What stuck with me is that he has the power to remove it. But I need to constantly surrender to him so he can take it.
John: Do you ever experience darkness, but Jesus is in it?
Kari: Oh yes, joy and pain can coexist. The Psalmists cried out in despair but also knew that God was with them. A lot of people focus just on the darkness. But you can make the choice to include Christ.
John: Let’s talk a little bit about what you needed from other people. If someone's in a position to help in this kind of situation, what do they say and do? What do they not say and not do?
Kari: One thing not to say is “I’m here if you need anything” and not really mean it. That was something that hurt us. We had a lot of people that said, if you need anything, just let us know. Then we would make a request and it was just crickets. That makes me not want to ask for help.
John: What if they have a heart to give, and want to help, but can’t promise the moon?
Kari: It starts with the people who are grieving. I recommend that instead of saying “Hey, I need this”, and risking rejection, say, “I need ____ . Do you know of anyone who can help?” This gives the person they are asking the opportunity to either accept the request and fulfill it, or to find someone who can.
John: That’s really helpful. I’ve heard from other people who’ve lost children that they want to hear their child’s name. Is that true for you?
Kari: It is. We don’t want them to disappear, and the only way to keep their memory alive is to talk about them. But we also need people who can show up and just be there. They don’t have to say anything. That may be hard, but the person who’s experiencing it doesn’t want to be there either.
There is nothing to say to the grieving person that is going to help what they're feeling in that moment. There are no words that are going to put comfort to their grief. So you don't have to say the right words.
Suffering is bad enough. Suffering alone is the definition of hell.
John: Yes, I would say that suffering is bad enough. Suffering alone is the definition of hell. In the book of Job, one of the things he says after losing everything is that he wishes he had friends to sit with him in silence.
Let's shift gears again and talk about the impact on the caregiver. What's it like for the person being the caregiver? What do they go through?
Kari: Being a caregiver is one of the hardest things you can experience, and yet it can be rewarding too. Not only does it physically, mentally, and emotionally exhaust you, it isolates you from everybody that you know. Even if you're a husband-and-wife couple, both of you are experiencing different things.
John: How many couples have you seen split up because they grieve differently?
Kari: The majority, and that's a scary truth. It almost happened to my husband and I, and that was my fault for pulling away in my grief, because I didn't realize that he was grieving too, but in a different way. If I had not opened my eyes to the destructiveness of my grief, we would have been another statistic.
John: I’m going to quote this from your book: “Once the shock wore off and I realized my deep-seated feelings of grief were waiting to be released, I shut down.” Were you avoiding grieving?
Kari: I was avoiding it big-time. I shut down because if I cried, I might never stop. I shut down everything and I locked it away because I couldn't go back to that night. And I did that for a little over a year. But I realized that when you lock away all your bad emotions, you lock away the good ones too.
John: You didn't know what you didn't know, right? So God had mercy on you. You found a good counselor that helped you recognize what you were going through.
Kari: The minute my eyes were open to the mess that I was creating, I started to panic. My counselor asked me the last time I cried, and I said, “It’s probably been three years.” He said, “You haven’t cried in three years?” And I said, “I don’t want to, because I’m afraid if I start crying, I’m never going to stop.” And he said, "You need to cry." That’s how I started coming out of it.
I remember having a shouting match with God. I told him, ”I do not understand what you're doing. And I don't like this.” I pictured him with his arm around me saying, "Of course you feel this way. That's why I died for you. That's why I want to be with you. Let's talk about this." I pictured myself climbing into my daddy’s lap and telling him what was wrong. I needed the comfort of Christ.
One thing that I always had said through all of Christopher's disease was that I wanted to be a light for God's kingdom, even in all the darkness that we were experiencing. I always said, "God, just do something great with this." The only way that's going to happen is if I don't stay stuck in my grief and if I use it for something good. You can't do that on your own, you have to allow God to pull you out of it into place where you are healthy and living with your grief at the same time.
John: I love that. Maybe sometime you can come back and talk more about that. It’s been great to have you on today!
Kari: Thank you, it was great to be here.
Listen in for more insight into Kari’s journey:
Recommended Resource:
A Light in Momentary Affliction by Kari Kaczan