Holding Hope Together When Our Children Suffer: Support for Medical Parents

Some weeks call for a pause.

Last week, we were scheduled to release a new episode sharing a valuable resource for medical parents. But with everything that unfolded in our country, it felt important to step back, take a breath, and model what we so often encourage within this community: giving ourselves space and grace when things feel heavy, and allowing time to process before pressing on.

So this week, we’re revisiting a conversation from the early days of Empowered by Hope—an episode that has quietly carried many parents through dark nights. We’ll return to our planned new episodes next week.

Originally shared in February of 2023, this episode centers on a question that sits in the chest and refuses to leave when a child is hurting: Why does God allow suffering, especially when it involves our children?

For many parents, this question emerges through faith language; for others, it rises as a deeper, human longing for meaning, justice, or understanding. However it shows up for you, the weight of it is real. And in moments like the ones we’re living through now—when suffering and injustice feel overwhelming and impossible to make sense of—this question often returns.

We don’t try to fix what can’t be fixed with tidy answers. Instead, we tell the truth about fear, anger, guilt, resentment, and the moments we felt abandoned—alongside the moments we were surprised by peace.

Together, we name four anchors that actually hold:

• Rejecting shame and the reflex to blame ourselves for a diagnosis
• Leaning into a grounding truth many parents find strength in: that our children are deeply loved, and that their pain is not meaningless
• Allowing reflection or prayer—raw, repetitive, sometimes wordless—to be exactly what it is, without polishing or performance
• Practicing acceptance without agreement with suffering, so we can make clear decisions, listen for wisdom, and keep showing up for the child we adore

If you’ve ever stood in a hospital hallway and wondered how to walk back into a room full of beeps and worry, this episode offers presence over platitudes, honesty over explanations, and space to face the full breadth of your emotions without judgment.

Sometimes hope begins not with answers, but with the relief of not holding it all by ourselves.

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

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Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon 

Transcript

Pause, Context, And A Re-Aired Conversation

SPEAKER_00 0:00

Hi everyone, this is Ashlyn Thompson, host of Empowered by Hope, brought to you by Parent Empowerment Network. So before we begin today's episode, we want to pause for a moment. Last week, we were scheduled to release a new episode of Empowered by Hope, one we're really, really excited about, sharing a great resource for medical parents. But with everything that took place in America last week, it felt really important to step back and take a breath. Rather than moving forward as usual, we chose to model what we so often encourage within this community, giving ourselves space and grace when things feel heavy and allowing time to process before pressing on. So this week we've decided to share an episode from our past and will resume releasing new episodes as planned next week. Today's particular episode is actually one of our earliest conversations from the very beginning of Empowered by Hope, originally shared in February of 2023, so three years ago. In this episode, Emily and I will talk openly about a question so many parents and caregivers quietly carry. Why does God allow suffering, especially for our children? When our children endure illness, pain, or uncertainty, that question can surface over and over again, whether we expect it to or not. And frankly, regardless of your faith, background, or beliefs. And in moments like the ones we're living through now, when suffering and injustice feel overwhelming and really hard to understand, that same question is coming up a lot. So in this conversation, we don't offer answers. We don't have all of them. But what we can offer is space and grace to face the full breadth of your emotions without judgment and to receive compassion and love. We share the full range of our emotions, from fear to anger, guilt, resentment, grief, and surrender. And talk about what to do with these questions when they come instead of pushing them away or judging ourselves for having them. If you too are feeling heavy, confused, heartbroken, or simply tired, and I'm talking soul level tired, we hope this episode meets you so gently. You are not wrong for asking hard questions, and you are not alone and wondering how to hold suffering that just does not make sense. Sometimes hope begins not with answers, but with the relief of not holding it all by ourselves. We're so grateful to walk with you, especially in moments like this. We'll return next week with new episodes of Empowered by Hope. But again, we hope this message meets you where you need it today and you walk away with a little bit extra hope in your heart and know that you are not alone. You're never alone.

SPEAKER_01 3:09

Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while. Empowered by Hope is here for you. Though we wish you didn't know this heartache, we're so glad you found us. So together we can walk this journey in hope.

Shame, Guilt, And Caregiver Burdens

SPEAKER_03 3:32

Hello and welcome to the Charlotte's Hope Foundation Empowered by Hope podcast. We are thrilled to have you with us today. Today's topic is a pretty heavy one. Uh, Ashlyn and Emily, we are both here, and we are grateful to be able to have this conversation. And, you know, we were even a little hesitant to have this conversation and have this topic as one of our um first, you know, 10 episodes that we put out there into the universe. But uh we ultimately decided that it was absolutely one that we should do because when you are first hit with receiving the news that your child is not healthy, I think it's a natural progression that we tend to wonder why would God let this happen to my child? So we think that, you know, really regardless of belief system, when you're hit with a devastating diagnosis for your kiddo, I mean, I think the majority of people end up asking a question like this. It might be subconscious, it might be something you never verbalize. But even when people don't believe in God or a God in general, a lot of times, you know, I've heard of people still turning to this question of like, okay, but if there is a God, why would he let this happen? Right. And so I don't, I think there's nothing like childhood illness, honestly, Ashlyn, that brings us to the end of our own capacity and, you know, makes us turn to the possibility that maybe there is a God. And then, you know, in our storm of emotion, it's easy to to make the turn, you know, to really question this why. So we're gonna spend some time on this topic. This, well, when you listen to it, it might not be morning. Right now it's morning. As per usual for us, we're trying to get up before the children and crank through this episode. But yeah, we're just gonna, we're gonna take this topic with the seriousness and the levity or brevity or respect. I don't know. We were trying to figure out what's the word. We were googling, what does levity mean or brevity? I'm uh always guilty of using the wrong words. Anyway, the point is being, you know, taking the respect and the time that this question deserves, but also shining some hope into it as well. And uh also just kind of, I guess, Ashlyn, as we start this conversation, I almost imagine us sitting on the floor right beside that mom or dad or caregiver who's having this question in their mind and just being there with them in that.

SPEAKER_00 6:01

Yeah. Exactly. And I would say that even extends to the grandparent, the best friend, the the nurses that are caring for them. I can imagine this question haunts a lot of us out there at at different points throughout the journey. You know, and maybe even the question I have is why would God allow just suffering in general, but especially for a child or an innocent infant, anything like that? That word suffering to me is what I really hold on to sometimes because that's the part that uh I still I can't reason it right, but we're going to give it our best to to address this question today and put out there right now, folks, we are not looking to answer this question because we we cannot answer this question, right? But but I think what Emily and I are hoping to do today is address the question. But you know, we help we want you to understand that we realize this is you're not alone if you're having this question at all. Um, I would say probably most people experience some sort of questioning about this, regardless of what your faith is. But just really letting you know you're not alone in those thoughts. And together, let's look at this question and let's really figure out how to work through it, the emotions that it brings, because it can really, really push the pause button, I think, in how you process this journey. And that means how you're able to show up for your child and for yourself. So um, while it is a heavy topic, I think it's a super important one. And yeah, let's get started. Let's dive in.

SPEAKER_03 7:32

Yeah, absolutely. And you know what? When we were preparing for this talk just a few minutes ago, Ashlyn, I think you made a good point about, you know, this topic might hit people at different stages. I think you were saying, and I don't want to put words in your mouth, but basically when you were first learning about the diagnosis for Emery, and then when you were, of course, in the hospital in the throes of survival, this question might have been more prevalent for you. And for us, it's come and gone in different stages. And honestly, just two nights ago, this was heavy on my heart and in my mind as I'm rocking Charlotte for the millionth time in pain, you know, before bed. And this question of like, why are we still suffering, God? Why are you allowing this to happen? And the honestly, the question that goes through my mind before I can even stop it is how long, Lord, until you address this? So, you know, this might hit you might think, oh yeah, I had that thought, but it was a while ago, or I, you know, it comes and goes or whatever. I think it just hits everybody different in different stages.

SPEAKER_00 8:32

I completely agree with that. And I know a lot of times I this question sounded more like, God, why aren't you stopping this? Yeah. Are you there? Do you care? Yes. Right. Do you care? Yes. And uh I think we'll just we'll dive into that with our our journeys and we'll discuss it. And hopefully you all will find a lot of value in this. But I think I'm just gonna come keep coming back to having this question is very normal. Yes. I know one of the things that I experienced was somehow still finding a way to beat myself up for having the question because yes, well, oh my gosh, is God looking at this as, well, she doesn't have faith, so therefore I'm right. I wasn't looking at this as a uh I was looking at it as a one-way street. Like it was on me to make sure that God wanted to help. And I will tell you that, my friends, that I am confident is not the case.

Four Anchors For The Storm

SPEAKER_03 9:23

Yes. Oh my gosh, yes, that's gonna be one of the first things we address in this episode is the shame that can come with the question that we're addressing here, you know, and shame is that the devil's work, pure devil's work, and he is so good at making our questions or our our feelings be a wedge between us and God, when in fact it can be an invitation for us to go deeper and closer with God. And so we're gonna talk about that. I do want to take a step back real quick and just I mean, obviously, this is a very Christian heavy episode. And I by now, if you've listened to a few of our episodes, you probably have picked up on the fact that obviously Ashlyn and I are Christian and we are very upfront about that, but we also, or and we also embrace uh inclusiveness. We want to be, you know, we we have likened ourselves to Chick-fil-A. Uh, it's very known, everybody knows they are a Christian-based organization and yet they serve burgers to everyone, right? And so Charlotte's Hope Foundation is not a religious organization, but obviously the leadership is Christian. So just wanted to put that out there that, you know, we really do want everyone and anyone at the table, you know, because honestly, medical complexities in pediatrics and the fetal world do not know religious bounds, nor do they know geographic bounds, that kind of thing. But we we also just want to be upfront with you that obviously we are Christian. That's the lens we're coming at this from. And hopefully, whether you're Christian or not, that this topic can just help you think through some of those emotions that you might be dealing with, with uh wondering how in the world it is that your child is going through what they're going through. So we hope that, you know, you stick around and you join us with this question, regardless of your background, your religious beliefs. But it's also totally okay if you want to just come back next week for something else. So yeah, I we were saying, you know, honestly, this is a question I struggle with a lot. And it used to come with a lot of shame where I would kind of hide it, but now it's like I just go straight to God with it sometimes with cuss words, even. Just like, what the heck, God? Right. Oh my gosh. Because Charlotte experiences pain almost every single night. And, you know, like I've said before, she's had 14 surgeries and in and out of the hospital constantly. And I know many of you tuning in, you're you are well acquainted with this just constant, almost like I almost feel like uh it's almost like an assault of just getting pummeled with tomatoes or whatever. Like it's just like never ending assault of watching your child suffer. And maybe you're not even in that storm yet, but you know it's coming. Like, like for us when we were pregnant and for you, Ashlyn, when you were pregnant and you knew that your child was going to be facing a lot of pain. And that is just a really hard place to be. So before we, well, maybe we could just share like the four things we're going to talk about. And then I wanted to share a little bit about uh a little prayer I had this week, Ashlyn, and then maybe we can go back to those four and dive in, just so all of you listening know what it is we are going to talk about in this episode. Perfect. Yeah, so the four things we thought we would really address here. And like Ashlyn said, we don't have the answers. I mean, I could sit here, we could spend the whole podcast talking the theological answers that we've been trained and all that, but I don't think when your heart is hurting as a parent that that's really what you need to hear. You don't need the heavy theology of like, well, you know, humans chose sin at the beginning and blah, blah, blah. And so here we are with suffering. Like, you don't need to hear that. What you need to hear is a different level. Uh, so anyway, um, we will talk a little bit about that, but really what we want to share here are four things. One is the thing Ashlyn already mentioned it, it is not, well, actually, I don't think we did mention this, but basically, I think it's something that we can quickly think, oh, it's my fault. I did something wrong. This is a punishment, and my child is suffering because of something I did. We want to knock that out. That is not the answer.

unknown 13:31

Correct.

SPEAKER_03 13:32

100%. We'll come back to that. And then the second thing we want to talk about, and I just love this because it grounds me so much in all my swirling thoughts all the time, is that God loves your child more than you do. And that reality changes the way you look at a whole lot of the situation. The third thing we want to talk about is how do you take these burning questions to God in prayer and not let shame be a wedge. And then the fourth thing, Ashlyn, you can jump in and share this because it was your idea and I think it's phenomenal.

SPEAKER_00 14:01

Right. So the last thing that I want to pose, and I think it'll be a fitting way to kind of help sum this up, is what can we do after this question? Because this question, like I said before, is one that can really paralyze us. It can really hinder our ability to think and move forward, take action, etc. And understandably, because it it comes with such an intensity of emotions. So we want to talk about what is another way maybe we can reframe this question. Because I think one there's probably two things that we can all agree on. One, none of us actually know the answer to this question, right? Not in our time on earth anyway, we're not going to get that answer with 100% certainty. The other thing I think we can all agree on is even if there was supposedly an answer we were given on Earth, I don't think any of us are ever going to say, all right, I'm now okay with my child suffering. We acknowledge that. Nobody needs to think that this episode is going to try to convince you otherwise. I'm certainly never going to be okay with how much I've watched my daughters suffer. I'm not okay with how much I know Charlotte suffers, how much Emily shut suffers because of it, etc. So, but yeah, I think once we'll we'll work on getting through these points, and I look forward to uh, you know, diving into this conversation a little deeper.

Stories Of Nighttime Pain And Prayer

SPEAKER_03 15:18

Yeah, absolutely. And, you know, this term that keeps swirling in my head and it's been used a lot, but I've never really fully understood it. I still don't understand it totally, but I feel like I'm on the journey to learning more about it is redemptive suffering. And I'm not even gonna pretend to try to explain it because, like I said, I don't know. But I will say I feel like I'm on the journey of learning it over the course, I think we all are, over the course of our lives, of what does that actually mean? Why, and and what, you know, what does that why does suffering have anything to do with redemption? I mean, you know, why did Jesus die on the cross and and it led to our redemption? And again, we can sit here and give all the theological answers. I mean, we were both raised in the church, we know the the biblical answers, but when your heart is hurting so much to to hit us with those answers is not, you know, it just doesn't quite no, it's not meeting us where we really are in life. Yeah. So with that said, we just are very upfront about the fact that we are both growing in our relationship with God. We're both growing in our faith. We don't pretend to be the ones who, you know, we're not pastoral counselors, but what we can do is just kind of sit there in that question with you and help from having wrestled with it for a few years now, guide you in how what to do with that question so that it doesn't become something that consumes you, but can help direct you. So with that, I actually had this vision, Ashlyn, and it was the coolest thing actually. I was praying the other day, and I just had this vision that I was on Calvary Hill, like on my knees with my face basically in the dirt, right beside Mary at the foot of Jesus' cross. And I could feel Jesus' blood and sweat dripping on my head in my hair. And I didn't even care. I almost like wanted the blood and the sweat on me because it was like it helped me participate in his suffering. Like he hurt so much, and I hurt so much with him. And I just felt, and this was probably a a prayer in response to my heart's cry of why does my child go through so much pain? And I just had this vision of like Mary's right beside me. We're both, you know, have tears steadily streaming down our face, and I knew she felt every nail that was pounded into Jesus' hand and feet. You know, she felt every splinter that she got from or that he got from the cross and every spit that the Romans, you know, spat at Jesus, and every curse word. I mean, she felt it to the depth of her soul because we as parents feel the pain of our children, right? Because I, at some level, can relate. Like every IV my kid gets, I hurt. I feel like I'm about to, like I feel it in my veins, right? And every scar that my child has, I feel like I bear too. And every doctor appointment that my child's afraid to go to, I'm, you know, I'm I'm right there with her. Every surgery feels like it splits me open and cuts me in half. So this was just such a comforting vision. And then the crazy thing was, I had this vision that like Mary just reached across and held my hand. And I was just like taken aback because I should be the one reaching out to hold her hand. I mean, this is her son on the cross, but here she is comforting me. And it made me just kind of step back and go, you know why she's able to extend comfort to me? It's because she knows the bigger picture. And while that that does not take the pain away at all about what her son's going through, it does help her see the hope because she knows this isn't the end of the story. Right. And that honestly is what's pulled, I think, me through is I know that this is not the end of Charlotte's story and the suffering is not pointless. I'm not sure what's going to be dealt done with the suffering, but I know it's not pointless. And as Christians, we know, you know, that even if our children are facing terminal illness, that it's not the end of our kids' stories. So I just wanted to share that vision. I just thought it was, you know, bomb to my healing heart, and maybe it could be for others listening.

SPEAKER_00 19:20

I think that is a beautiful vision, I will say. I I don't think I've ever had a vision like that, but I have had what I would call, I what I firmly believe almost an encounter, maybe encounter is a better word, where nobody will ever be able to convince me otherwise, but I will swear that there were, and maybe it was every night, but there were a few really key, intense, intense nights when Emery was recovering from her surgery. When I swear to you that Mary was on one side of me and Jesus was on the other side, and that was the only way that Emory and I together survived the night. And nobody will ever be able to convince me anything different than that. And I'm grateful for that experience because it honestly was it's what kept me going and it's what made it possible to face something that my human self alone wasn't capable of handling. Yeah. So absolutely we um do you want to go? Should we go point by point? Uh the ones that you were introducing earlier about so starting with number one, just recognizing, acknowledging there is nothing that you as a parent have done to bring this on to cause this. Yeah.

SPEAKER_03 20:36

Yeah. And, you know, I mean, this goes back to why was our very first episode of the Empowered by Hope podcast about guilt? This question right here, because oftentimes we, you know, one of our first questions is what did I do to cause this? Whether it was something I physically did or ate or whatever, the environment I grew my child up in, blah, blah, blah. We often want to try to answer the challenges our children are facing by answering what did I do to cause it. I think because it gives us a sense of control or like a solution, or, you know, it helps us just understand more. And that's perfectly natural to go there. Obviously, we have an entire episode about it. So check out episode one, all about guilt. But for this specific question about why did God allow this for my child, I think it's very important to remember it's not because you did anything. This is not a punishment for a sin that you did. This is not a punishment for your child by any means or anything like that. It it just is what it is. You know, there's not a whole lot more to say to that, but I think that thought is gonna probably cross your mind of what did I do to cause this. And if it doesn't, that's great. But if it does, take that to Jesus, lay it at his feet, and let him have it because it is not, this is not your fault. There's nothing about your child's illness that is not your fault, and this is not punishment by any means from God.

God Loves Your Child More Than You Do

SPEAKER_00 21:57

Definitely not. And I actually I want to take this. Opportunity to share, I'm able to, I don't know if laugh's the right word about it, but maybe look backwards with a bit more grace and understanding at my complete, what I consider now irrationality at the time of diagnosis for when we received Emory's diagnosis. And I've talked about in previous podcasts about how this came not too long after having lost my dad to an almost two-year battle of he had suffered extreme severe, severe strokes. He was completely um debilitated in terms of he could not speak for himself, he could not move his body himself. And he was what I would essentially say felt like trapped for almost two years. So I felt like our family had kind of endured its amount of suffering for a while. I felt like our cup was full, it runneth over at times. And so, you know, I thought we were past that. But when we got the diagnosis, one of the thoughts that I moved to fairly quickly after the question of God, why, why? And I started pointing the finger at myself. I thought, oh my gosh, somehow I twisted it into this idea of I didn't learn the lessons I was supposed to from the experience with my dad. And because I didn't learn those lessons, this suffering on earth is going to continue. And now it's my worst nightmare coming true. In terms of, I used to say all the time with my dad, as horrible and painful as it was, I could somehow handle it because it wasn't my child. That was the one thing I would say all the time. I can't handle it if it's my kid. And then it felt like almost kind of felt like it got shoved in my face a little bit, to be honest. I remember there was resentment, like, and then I was mad at myself, like, I shouldn't have tempted fate, like I have any control over this. I don't. I don't think God was like, oh, she's she's just gave me a good idea for a test. I I don't believe that. But in the moment, I just want to share where my thoughts were because you might be thinking you're, you know, maybe you're thinking your thoughts are really bad or like embarrassing. If you are a Christian, you might be like, oh my gosh, I could never tell somebody the things I was thinking about God or the things I was upset about or mad about. We can lay it all out here. And I just want to share that and be really honest about some of those. I won't even say crazy. They were just very real thoughts that went through my head. And I've since worked through them. Doesn't mean there's certainly been new ones that have come up that I have to work past. But yeah, I mean, Emily, I'm guessing you had a couple thoughts that made you think, what was it that you thought caused it initially? I know you had some thoughts.

SPEAKER_03 24:35

Oh gosh, so many things. Well, you know, the what a lot of parents think of like, oh, before I knew I was pregnant, I had a few too many drinks, or I sat in the hot tub, or um, the one time I think I was 12 or 13 weeks pregnant, and we were out west on a family reunion trip, and there were a lot of wildfires going on. So I was inhaling a lot of smoke all week. And I remember being like convinced that that was what caused my child. I know it's funny now that you know, I should have worn a mask or I should have just gotten on a plane and gotten out of there or whatever. And I was, yeah, I was really convinced. And then it was, oh my gosh, we painted the house while I was pregnant, and that did it. And then, you know, it was like, well, we're in an 1860s home, so it's all the old toxins, and oh my gosh, yeah. And now the one thing that never really did cross my mind, and I'm very grateful for this because the the weight of it would have been crushing, but it never really did cross my mind of like, oh, my previous sin is coming up to haunt me. But I think that's a very real thought that a lot of people have. And it's uh, you know, I I just yeah, I think that's a perfectly um understandable thought, and we're just gonna kick it to the curb now because no, that's not why we drop it.

SPEAKER_00 25:48

Yes. Yeah, we're done with it. Give that baggage at our doorstep, we will happily take it for you.

SPEAKER_02 25:54

Yes, absolutely. We're just gonna take it to Jesus and drop it off in droves and be like, here you go, God, deal with that.

SPEAKER_03 26:00

Yeah, so it is not your fault at all that this has happened to your child. And if we live in that space of feeling like it is our fault, then we're living in this space of fear and we're not able to show up for our child the way that they need. So if you are feeling like it is your fault, again, we just want to recognize that's understandable, that that's where your head has gone. So don't be ashamed of it and take it to God. I mean, be super upfront with him. Just like tell him, this is what I'm thinking, this is what I'm feeling, what do I do with this? And I think he might not, you know, speak verbally to you, but I think you'll get an answer in some form or fashion and some comfort and some peace. So that's point number one. Any other thoughts on that before we roll on?

SPEAKER_00 26:42

No, it I think that's a pretty good summary.

unknown 26:44

Okay.

SPEAKER_03 26:46

So point number two, uh, this is honestly the truth that got me through the pregnancy, and still to this day I cling to. It's the truth that God loves your child more than you do. Let that rock your world for a minute. You know the depth that you love your kid. Oh my gosh, to the ends of the earth. Right, you'll do anything. Think about how much God does. It's overwhelming. It's overwhelming, it's not conceivable. It doesn't even, yeah. And so I kept coming back to this thought of like, okay, I don't understand it at all. But if God loves her her, Charlotte, more than I do, then he must see something bigger than I do in this situation. He must know we're going towards something more beautiful than I can imagine. You know, like there must be purpose to this pain because if he loves her more than I do, then this pain can't possibly be for no purpose. I don't know the purpose, and I'm not even gonna say I'm okay with it because it hurts. But what is the song and the verse? Oh shoot, I'm forgetting now. It's well with my soul. And I'm not even gonna pretend to try to explain like how to get to that point because I'm not sure exactly. But like there's a certain level of like realizing, okay, I'm not okay with my kids suffering, but I am, I do grasp the fact that God loves my child more than I do. And therefore, it's not well with my soul that my kid is suffering, but it is well with my soul that God's gonna do something with this. He's gonna make it better, he's gonna glorify it somehow, right?

SPEAKER_00 28:27

Exactly. I think one of the things that I I take from that line of thought too is that God's not going to waste anything, and that includes our pain, that includes our child's pain.

SPEAKER_03 28:36

Yeah.

SPEAKER_00 28:37

Um, there's this, there's there is a song that I was actually listening to yesterday, and I need to put it in the show notes, I guess, so that way I don't um give appropriate credit. But uh one of the lines are, you know, I see the battle, God sees the victory, and then I see the mountain, God sees the mountain moved. And I think that that is something that can really, once again, doesn't make you feel happy about it, doesn't mean that you're going to accept the pain, the setbacks, the letdowns, all of that. It's not going to make that feel better. But I think what those thoughts can do is inject that ever important necessary sliver of hope. Yeah. Right? That this all can't be for nothing. And that was honestly that's something that I still am really, really clinging to very hard because when Emery was, you know, told you all, she had surgery at seven weeks, and for four weeks, she could not be picked up and she wanted to be. It's not like she was sedated and not conscious, right? No, she was in pain and she was very aware of what she wanted and what she needed, and I could not give it to her, and I just felt like I had been stripped of everything that a mom is supposed to be, and I could not get it back until they gave me permission, right? And it it really, really did a number on me. Um, like I said, Mary and Jesus definitely saved me. They definitely, you know, there were some nights where I I was totally beside myself. I can remember one night where I had I'd actually gone home for just a couple hours to shower in a shower that was bigger than, you know, two feet by three feet and get some, you know, bring some fresh clothes to the hospital with a towel that's bigger than one square foot. Right. And uh maybe doesn't, you know, feel like a bristle pad. Um you know what? That's another we need to whoever has a really good uh towel line, we need to talk and we need to talk about how to get you into hospitals with the Charlotte's Hope Foundation logo on it.

SPEAKER_03 30:41

Exactly. I love it. Feel embraced.

SPEAKER_00 30:44

Oh my gosh, I love it. Right? Item number one of our product line. Embrace towels. Um, I can remember driving to the hospital, and my mom called me, and my mom is one of those people. I'm really grateful she does this. She goes, I just want to warn you so that way you're you're embraced when you get here. Emory is having a very, very hard time right now. And she has been for a while, but I wanted you to get your shower and help you, you know, give you a few moments to compose yourself. But I just want you to be prepared and not scared when you walk in here. And at first I was just I was terrified. I was uh because Emory's heart rate had really been a struggle with her pain. And there were multiple times at that point still that they were talking about does she actually need to go back to the ICU? Because they were afraid they didn't, they were not fully equipped on that floor to handle a full-blown emergency. Obviously they were, but it's not what they're sitting there waiting for like they are in the ICU. And that terrified me, uh especially since we'd already almost lost her a couple times. Right. And I remember just saying, It's funny, I actually went to Mary. It was easier for some reason. I really, really connected with Mary on this journey, and I still have to this day, but Mary to me, I guess, is just an extension of God. And I remember saying to Mary, I'm not in that room, but I know you can be. You have to make this better. This has to get better for her because her little body cannot keep handling this.

SPEAKER_04 32:16

Yeah.

SPEAKER_00 32:17

And I was probably about 10 minutes away and I was bracing myself when I walked down that corridor. Cause usually you could hear her when she was having these, like you could hear her from very far away. Oh, sweet. This little tiny body. And I realized I didn't hear anything. And I got to the door and I was almost, I couldn't decide if I was like, I remember taking a big breath and saying, like, Mary, I really hope you're in there. And my mom was in there and she was standing next to Emery, and Emory was asleep. And it was probably one of the most beautiful sights. Like, I'm actually getting emotional about it now. It was one of the most beautiful things I have ever seen because I knew right then and there Mary had done exactly what I had asked to. And that's one of those things, like I said, nobody will ever be able to convince me anything different happened. And my mom even said she's like, she goes, within a couple minutes of getting off the phone, she's like, Ashlyn, it was she goes, I was even getting scared. And my mom does not admit being scared easily.

SPEAKER_03 33:13

Right, she is tough.

Mary, Motherhood, And Finding Comfort

SPEAKER_00 33:14

Yeah, she is, she is, she is the absolute rock. And she goes, all of a sudden, she goes, Emory just started to you know take some deep breaths, and she she calmed down the fastest I've seen her calm down, probably since we've been in here. And she finally went to sleep. And I just I will forever be grateful for that. I feel like I'm still giving praise for that because I want it to be known. I have all the gratitude in the world for this. Like, please, you know, please accept that and know that I don't take this for granted because I'm scared of the next moments that I need it, to be honest. Sometimes that's where fear still sneaks back into the conversation with God. Um, do you does he know I'm thankful enough? Does he know that I appreciate it enough? Or is he going to keep giving me what I'm asking for for my child?

SPEAKER_03 34:02

Oh, yeah. I have the same thoughts of like, I've been begging God basically since the summer. Well, basically since she was born, but really intentionally since the summer. Lord, take this pain away. And then we'll have about a couple days of her being pain free, and I'm almost afraid to even acknowledge it. And then when her pain comes back, I have this thought of, oh my gosh, did I not praise God enough? Did I like go to him and be, you know, continually pester him about this pain? And then I didn't come back and thank him, and now we have this pain again. And no, that's not why. No, you know what? The other thing you said, oh my gosh, what you just shared was so beautiful. I wrote down a couple notes to make sure I didn't forget. I think our kids with medical complexities have a exposure to spiritual things that we just don't even comprehend.

SPEAKER_00 34:52

100 million percent. I completely believe that. What I think they call it the veil, yeah, significantly thinner for these children.

SPEAKER_03 35:01

Yes, I think so. I mean, first off, I think as a kid, the veil is a lot thinner. You know, God always, you know, talks about how kids under I don't I don't even know the Bible verses, but you know the point. Kids uh just comprehend spiritual things much faster and with a lot less uh cynicism. Is that yeah, is that the right way? Yeah. But I do think like I bet Emery and Charlotte have had conversations with, you know, Jesus and Mary and all kinds of people in heaven that we just can't even fathom. Like the one time I remember Charlotte had was in so much pain before bed. It was a really bad night. And then finally she just up and fell asleep, which is often how it comes and goes. It comes fast and it goes fast, but it lingers forever. So um the and the next morning she woke up and she actually looked rested, which is very rare for her. She usually has big dark circles under her eyes because her quality of sleep is so poor because she's hurting. And she came down the steps and she was super joyful. And I was like, Hey, you know, how was your night? And she was like, Great, and or good, or whatever. And I said, Um, so you were in a lot of pain last night. What do you think helped? And she, without even skipping a beat, she goes, God, and then she went and got her milk.

SPEAKER_02 36:13

This was like when she was four. I love her.

SPEAKER_03 36:15

And I was just like, What? I mean, I believe you, but I want details. Of course, she didn't give any details, but yeah. And then the other thing I wanted to just point out here, real quick, we both have been talking about Mary, and I know depending on different religions, that that can be a bit of a rub because I think sometimes it can be perceived as a worshiping of Mary. And I just want to clarify real quick, Ashlyn and I are not worshiping Mary. We're not putting her on the same level as God or Jesus at all. But we are. She is the mother of God. We know she's in heaven. I mean, I think that's known across all religions that are Christian, right? And ultimately, when we talk to Mary and you know have a conversation with Mary, it's it comes back to um the very first miracle Jesus did at the wedding in Cana, where Mary says, um, do whatever he tells you, right? So basically we go to her because as moms and as parents, we can really relate to her. And sometimes that relatability just helps a lot to be able to have that hand to hold or whatever. And we know she's gonna take our request to Jesus. And what kind of little boy can turn turn down a request from his mama, right?

SPEAKER_00 37:23

Exactly. So I look at Mary as an extension of God. I look at her as a way to connect easier to Jesus because sometimes I can find it hard to, you know, maybe it's reverence, I don't know, maybe whatever it is. But sometimes to talk directly to God is a little difficult for me, I'll be honest to say, because you know, sometimes I'll think like, do I really deserve his attention right now? Like, you know, I mean, is what I'm asking for really, you know, his time or you know, worthy of his time? And I know that it is because that's the God that we serve, that we believe in, we love. But connecting with Mary and because of her experience with pain, I think I mean it's all very beautiful to me how God set her up to be such an important part of the story. I think it was all intentional for her to be a connection for us who were going to know more suffering on earth. Yeah. And especially with our children. So I would say maybe if you're somebody who's having maybe you're having a hard time talking to God in general, whether it's because you don't know how to, maybe it's because you're not sure what to say to him, maybe it's because you're really mad at him. Um all of those are fair. Yep. You know, maybe sometimes maybe a trying to talk to Mary as a start, maybe that's something that could help lighten your heart a little bit. And there's nothing wrong with that. Or even Joseph. Yeah.

Taking Raw Questions To God In Prayer

SPEAKER_03 38:41

Yep. As a father, if you're a father and you're struggling and you want to connect somehow to Joseph, yeah. And it's not ever that we are putting these humans on the same plane as God. Like Mary is not God, far from it. No, she's a human being, you know, Joseph's not God. And again, we're not going to get deep in theology. I just wanted to make sure we address that because sometimes people can hear, oh, talking to Mary, and they think, oh, they're worshiping Mary and quickly, you know, turn off the podcast. We're not worshiping Mary, not even remotely. But sometimes just coming to someone that we feel more relatable with um can be really helpful in guiding us to Jesus. And ultimately, that's all Mary's ever going to do is be the conduit to lead us to Jesus. Now, can you go straight to Jesus? Absolutely. Have at it. Go right to him. Sometimes some people need a little buffer, and Mary is great for that. So, okay, hopefully we did Mary and Jesus justice in that little side note. But I just wanted to jump to before we go to question three or the point number three of taking questions to God in prayer. I'm turning it to my the book, She is Charlotte, to chapter 12, page 87. Because I actually addressed this question, not for very long. It's like literally a half a page, but I do address this question because in this chapter I'm sharing about the apprehension of Charlotte, you know, being born and all the pain I know she's about to suffer. And, you know, whether she lived or not, I knew she was going to go through a lot of pain. We were going to go through a lot of pain. And we were actually in this scene in the book, we were putting up a decoration in her nursery that says, You are fearfully and wonderfully made. And it's still up there on the wall. And I remember putting it up thinking, I really hope she internalizes this truth. And then having the subsequent thought of, but if God really fearfully and wonderfully made her, then why did he make her knowing she was going to have all this pain? You know, why didn't he make her healthy? And so in this scene, I kind of step out and do what I call like a little heartbeat or addendum thing where I kind of like give a little explanation. So I just thought I'd read it really quick because it launches us into point number three very well. So why would a good God let kids suffer? And here's what I wrote. This question, why would a good God let a child suffer, is one I do not have an answer for, but every parent faced with their suffering child likely wrestles with. Sure, I can give the theological answers, like God gave us freedom, and in that freedom humanity chose sin, and with sin comes suffering. Or, like, God never causes pain and suffering, but rather allows it. Or like his ways are not ours, and his ways always lead to the good of those who love him, even when we don't understand. While these answers are true, they hardly satisfy when you're the parent watching your child suffer unspeakable pain. These answers simply don't cut it. They don't begin to adequately answer the parent's heart cry for justice. One thing I do know is there is no shame in asking the question and pressing for answers in humble, earnest prayer, recognizing his ways truly are not ours, and we may never know the answer or at least be satisfied with it on this side of heaven. I think that launches us into the third point here of taking your question to God in prayer. I think so often, like you were saying, Ashlyn, we can out of shame or embarrassment or feeling like we're gonna offend God, like we can't take this question to him. Okay, let's just take a step back and think about this. You're not gonna offend God by taking your emotions to him. He's God. He created you. And the only one who's trying to convince you that you should hide your thoughts from him is the devil. Like, there is no way being honest with him is gonna be a problem, you know? And I think that's been one of my biggest learnings in this whole journey with Charlotte is like Cut is big. He's really, really big. And I think he can handle our emotions, you know, and he can handle the real questions in our hearts. And quite frankly, if we can use those questions as an invitation to go deeper with God, I mean, your mind will be blown. You're not gonna get like this voice thundering voice. Well, maybe you will, but I didn't. If you do, that's awesome. But you're it's likely that you're not gonna get a thundering voice answering your questions, but you will find that he'll meet you in that pain and he'll slowly but surely hold your hand and guide you through it, you know? Um, and and there's you I mean, if you really take it to him and you let him have your real thoughts, sometimes cuss words and all, he's not gonna shut you out, you know. I mean, you might have to, you might have to ask for some forgiveness after you shout it out at him, but but I don't think it's really a problem to just be like, this is what's really on my heart. So I just wanted to put that. I'm curious your thoughts, Ashlyn. Like, how does that sit with you?

SPEAKER_00 43:30

Uh I completely agree with that. I think it's funny, you know, one of the things you talked about, remember, like, God can handle it. Like He He is a big and mighty God. I think that's one of the reasons that I have always found so much peace by standing in front of, ha, Emily, this is actually where you and I met. In front of a very large body of water. That's where you and I first connected was standing on the shore of Lake Michigan. After I'm gonna say that God walked down those very, very steep steps with us after a wine tour around southern Michigan. Again, kept us safe because nobody else would go with us. But you were good reason. You and I should not have done that. But I would say we were we were held up by the Holy Spirit for sure. And I remember we connected there. But I always feel so peacefully small, whether it's next to the ocean or a huge lake, especially when I can't really see beyond the horizon. There's something about feeling so small in that way that reminds me if God can do all this, I He can handle like what I'm going through or what my family is experiencing, He can surely handle that. And I think going to Him in prayer too, a lot of times, you know, I want to back it up a little bit. When you hear going to prayer, Emily's not only talking about, you know, saying an official prayer or following certain words. You don't have to say the Lord's Prayer or what have you. It's having a conversation with God. Yes. And sometimes it might feel one-sided, which can feel uncomfortable. It can feel frustrating because, like you said, I'd love to have that loud booming voice. But I think God does talk back to us. And this actually goes back to something Emily and I've been wrestling with this past week is really about trusting your relationship with God to realize that those inner stirrings, those feelings, those sometimes gut feelings that take over. And you'll think, Am I am I really right to be feeling this way or to be thinking about this? Why do I feel so driven to do this? And maybe it doesn't make sense to everyone. I really believe that that can be God speaking to us, but we have to trust him to realize that he loves us enough, he loves our child enough to find a way to get through to us if we're open to hearing it. Now don't in turn go and punish yourself for not being able to interpret those thoughts. That takes practice. And I would even say that takes a lot of work to trust yourself. Because I tell Emily all the time, I trust God, I just don't trust myself to hear him correctly. Right, right. And that scares me. I'm in a situation right now where I need to make what feels somewhat like an impossible situation for Emery or make a decision for her. Sorry. And you know, I'm starting to come around to the idea that maybe there's not a hundred percent right option and a wrong option, but either one has a big implication on what the her future looks like. And I have just been go at first, I'd been going inward, inward, talking to myself, talking to doctors, talking to my family. And that's all very important. And even talking to Emily honestly is a huge help for me a lot of the time. But when I sit in the quiet and I talk to God and then just allow myself to be open to hearing from him, that's when I start to feel peace come in. And I will say, this has not come to me without a lot of work and a lot of time. I'm further out from, you know, now I'm I'm getting I'm a couple years out from diagnosis. It's almost been two years since we got the news. And at that point, I wasn't ready to hear God. I was ready to yell at God, to cry to God, you know, show him what my redhead temper can really look like. I want to see that, but not targeted at me, please. Yeah. Do not uh yes, uh, not so much, but it's it's evolved. So hearing we're Emily and I in our relationship with God, with our trust, with our even if maybe it's even accepting. I think accepting suffering is very different from being okay with it. Yes, it's not the same. You don't have to be okay with the suffering to accept that it is it is a part of this, it's at least a part of your life, right? It is there. And unfortunately, there is not a switch to flip sometimes to turn it off as much as we wish we could. Right.

SPEAKER_03 47:55

I think you hit the nail on the head. The whole journey of growing closer with Christ and aiming toward heaven is a journey of learning to open yourself up to him. And it's vulnerable and it's scary. And honestly, I think this journey with our children with medical complexities can almost be like a fast forward button in a certain sense because you learn you really don't have any other option. I mean, sure, you can close yourself off to him, but then it becomes very dark and hopeless. And I I mean, I can't even fathom trying to survive this life without him. I'd be really, yeah, anyway, about to go down a rabbit hole there. But but I think we learn in a fast forward way how like you have a couple options, but the only option that's gonna help you survive this with some sense of joy and hope and peace is to just open yourself like you cannot stop the pain. It's coming, you know? And so just like again, it's not being okay with it, but it's opening yourself up to God. And what does that actually look like? It means taking your real thoughts to Him, the real ones, not the cleaned up ones, not the ones that you were taught in Sunday school of how to like, you know, pray with your folded hands and be really nice and polite to Jesus. Like, no, this is being real. This is, I remember the best example that comes to mind, Ashlyn, is um we miscarried a baby when uh Charlotte was about six or eight months old. And the loss of that baby was so, so painful. And I remember actually standing in the bathroom holding the baby that we lost. And I realized it's it's honestly a blessing that we even got to hold the baby because a lot of times that's not an option when you miscarry. Anyway, the point is I had this like rush of rage at Jesus, like all out rage. And I just remember, again, having this almost vision or encounter of me literally throwing punches at Jesus. I think I wrote about this in my book or on a blog or somewhere. And just like letting it all out, screaming, punching, like, what do you want from me, God? Like, I've given you my child who has all this pain. At that point, she'd been through probably seven surgeries at six months old. You know, I've given you all of this, I've come to you, I've I've I've trusted you, I've loved you through it all, and now you take away my second child. Like, what do you want from me? And then me bracing myself thinking, oh no, here it comes. I just yelled at God. I just literally threw a punch at him. But you know what I was met with was an overabundance of grace. And I had this vision of Jesus just like pulling, like letting me hit him and then pulling me in for a hug, and then just slinking to the floor and holding me while I sobbed. And it was such a beautiful encounter that taught me it's it reminds me of like the story of Jacob and how he wrestles with God overnight, right? And he doesn't he doesn't die from wrestling with God, does he? We somehow we fear like we're gonna die if we do that. No, he walks away with a limp. And you know what? I've come to learn that that limp is a very good thing because it's a forever reminder of the love Jesus had to wrestle with you, to meet you in those moments of pain, wrestle it out and love you through it, and then have this limp so that you remember God's with you in your pain. Okay, I'll get off my pulpit.

Learning To Listen And Trust

SPEAKER_00 51:20

I think one thing that you've taught me, Emily, that I think is a good way to probably wrap up this point is I remember through some of my darker times at the beginning, you know, we talked about taking it to God, but I remember you gave me permission or you opened my eyes to the fact that going to God could literally just be repeating, oh God. Yeah, God, like, oh God. Like, I mean, literally, I think that that was all I could utter at times. And sometimes it was out loud, sometimes it was in my head. But there was some pressure taken off my shoulders, realizing I didn't have to put together adequate words to ask for help or or to state my feelings. God is very, very intimately aware of what is going on inside of us. It's part of that connection, it's part of the fact that not only does he love our child more than we do, which I mean, I that is just the most maybe that is the most mind-blowing thing I believe, honestly. I do believe it, but knowing the love that I feel for my children to know that God loves them more, it's I don't think my head can contain that. But not forgetting that God has the same love for me. Right. It doesn't expect there's not a it's not like you become a parent, so now you've got to read all you've got to, you know, reach a whole new level of prayer. You have these new requirements in order to stay connected to him. No, it's just like us as parents. Like, I now realize what my mom would always say like, you are my children are going are my children forever, you are my baby forever. Not in that she babies us as adults, but I understand now what that means to be like, you are forever my child. I am forever going to be extremely invested in what is going on in your life and and worrying about you and wanting the best for you and wanting to support you. It's the same with God for us. So I think that's something too that I would encourage you all to remember is this his love extends to you, his support extends to you. He doesn't want to see you hurt any more than he wants to see our child hurt. But I think that's why, you know, one of my favorite poems, and I know a lot of people love the poem, The Footprints in the Sand, where I'm not going to read the whole thing, but you know, the most impactful part of that poem is, you know, the person in their dreams says, you know, God, I looked back at my life and I'm confused and frankly a bit upset and hurt that in the darkest times of my life where it was the most pain and the most sadness, when I look at the footprints in the sand, I only see one set of footprints. Where were you? How could you abandon me in the time I needed you most? And God's response was, you know, my child, I would never leave you. I would never abandon you. Those times you see one set of footprints, I was carrying you. And I feel like I have been in God's arms since, honestly, probably since the day I got the news about my dad's stroke when it started. And I don't think my feet have touched the ground since. Yeah.

SPEAKER_03 54:08

Yeah. And like that story in the footprints in the sand, oftentimes when he's carrying you, you don't know it. You know, it's not till hindsight that you have the kind of vision that can see that. I mean, looking back on our journey with Charlotte, a lot of people will say, like, I don't even know how you're still standing. Yeah, I don't know either. I just know that we have gotten through this because God's been with us through the whole thing. And, you know, again, we've said this a few times in a lot of different episodes, but would I wish this on my child? No.

SPEAKER_00 54:43

Oh gosh, no.

SPEAKER_03 54:44

But also, would I go back and change it? I mean, that's a tough question to even ask, and it doesn't even matter because I can't. But like the fruit that has come from this journey and the depth of relationship it has brought us to God and the the depth of just like living life fully and realizing the brevity of brevity, right? I don't know. I totally am screwing up that word today, but the shortness, the frailty of it. Yeah, I just feel like this journey opens up a window that kind of like what we were saying about the kids having more vision for spiritual things. I feel like you really, if you allow it to, you know, this isn't gonna happen if you close yourself off, but if you open yourself up to God, and again, that doesn't mean formal prayer or like saying the right things. It means just being real with him. It means like talking to him the way you would with a best friend when you're really feeling hurt, you know?

SPEAKER_00 55:36

Right.

SPEAKER_03 55:37

That you can just go, that you can experience things that maybe you wouldn't have otherwise. So we're gonna wrap this up. This has been, uh, I personally think a phenomenal conversation. I don't know how much we're going to, you know, we're still kind of formulating how much, you know, faith topics will interweave with some of the different topics that we're talking about. So I guess I'd be curious for those listening, do you want more topics like this? Don't you, you know, reach out to us at contact at Charlotte's Hope Foundation.org. We'd love to hear from you. Uh, maybe what are some of your ways you've helped navigate this question of, you know, why does God allow suffering for our child or why did he let this happen? Um, we'd love, love, love to hear from you.

SPEAKER_00 56:19

Emily, they can also um just a reminder, you can also join us in our, you can search for us on Facebook. We have the Charlotte's Hope Foundation Empowered by Hope group that you can join. You just have to fill out a couple simple questions to get in the group. It's an open, safe space for us to talk about, you know, topics in the podcast. But this is one I would love to see what people's thoughts are on this. And that would be a great place to let us know. You know, is this a topic you want to lean into more? Has this made you think of other topics you would like us to talk about? We want to hear from you because this podcast is for you. Honestly, it's probably it's a lot for Emily and I too, because this is one of the ways that we're healing through our pain or at least managing the pain and struggle that does come with this life. This is one of those gifts, honestly, that you know, we were just talking about. Would we want this for our children? Would we choose this for them? Absolutely not. But are there somehow incredible gifts that have come from it? Absolutely. And so, yeah, would love to hear your thoughts and you know, see what resonates with you all and see where you'd like to take this.

SPEAKER_03 57:22

Yes, a hundred thousand percent. And uh ultimately just if you come back to I I'm curious, Ashlyn, what your like one thought from this episode is that you want to, you know, would cling to or that you think is most important. I think for me, it and it's this is just a nature because it's pulled me through the last five years. It is truly remembering God loves you and your child more than you do. And that just changes everything.

SPEAKER_00 57:49

I I think that's probably is the the resounding sentiment that I hope that everybody gets from this is that you are not alone in this. And he loves your child more than you do, he loves you more than you can possibly imagine. And just remember when you're going through the suffering and you're feeling abandoned, God's right there suffering with you. But he's making a way forward. And maybe you can't see it. Maybe it feels so far off. Like I talked earlier about that song that says, We see the mountain, but he sees the mountain moved. We don't know the timeline for that. We don't know what that looks like. And frankly, as hard as this is, sometimes that mountain move doesn't take place on earth. And as hard, I mean, I just, you know, I can't even really put words to it. Relying on the fact, the simple fact that God is always there and we're not going through it alone, that can be enough, like I said, to just instill that hope that you can do this, you're made for this, and you know, there are beautiful gifts to come, even if you can't see them right now.

SPEAKER_01 58:52

You are capable, you are equipped, and you are not alone. Together we can do hard things for our children. If this episode connected with you and you want to hear more, be sure to hit the subscribe button. We would also love to learn about your personal journey and how we can support you. Reach out to us at contact at charlotte's hope foundation.org. And last but not least, if you know of someone who could benefit from this podcast, please share.