Take Heart

What To Do When You’re Struggling With Guilt

• Amy J Brown, Carrie Holt and Sara Clime • Season 1 • Episode 41

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Amy, Sara, and Carrie dive into the topics of mom guilt over their child’s diagnosis, doubting their faith, and balancing the needs of siblings. It includes encouraging reminders about listening to the right voice, seeing a therapist is about having another wise adult speak into your life, and focusing on the little joys in every day. 

May 25, 2021

Timestamps & Key Topics:

  • 0:22-    Intro
  • 1:06-    “Mom Guilt”
  • 4:00-    Guilt Over Diagnosis
  • 11:47-   Faith Guilt
  • 13:42-   Whose Voice?
  • 22:01-   Balancing Siblings
  • 29:55-   See the joy
  • 35:27-   Prayer
  • 36:26-   Outro

Episode Links & Resources:

  • Scripture mentioned: Psalm 139

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Amy J. Brown (0:22) 
Welcome to Take Heart where our goal is to give you hope, offer insight and encouragement so you can flourish on your journey as a special needs mom. Each week, Sara, Amy and Carrie will explore a theme, share inspiring stories, practical tips and encouragement you can use on your journey. Using our combined experience of over 30 years of parenting children with special needs, our prayer is that you take heart and have the courage you need to embrace each day. Thank you for being here today.

Amy J. Brown (1:06)  
Welcome. I'm Amy Brown. I'm here with Sara and Carrie, and we are talking about mom guilt. Mom guilt is universal. We can all commiserate. We all have moments we look back on and remember how much guilt we felt. Sometimes we laugh at those moments. I have a story of when I was a new mom, and I've been a mom for 28 years. My oldest was four, and he was in preschool. He wasn't doing well. He didn't like it. He was not ready to be there. Since I was a new mom, and I didn't have perspective, I felt so guilty that I had not prepared him for preschool. As the weeks and days went by, I got more and more guilt ridden. What did I do wrong? Finally, it all came to a head, and we decided to pull Davis out of preschool, which is really not that big of a deal, but in the moment it was. I called my husband at his actual job where he's busy and said, “I think we need to pull Davis out of preschool, and I'm worried he's not going to make it in the world. I felt really guilty.” My husband who's never guilty I don't think and doesn't overthink, said, “Amy, it's not Harvard Medical School, okay. You can pull him out of preschool.” I did, and he did fine. He's actually a functioning adult. The point is, that was a big thing at that moment for me, a really big thing. I felt a lot of guilt around that. Now with perspective and time, I can look back and kind of laugh. I know we all have moments like that, and that is mom guilt. I want to talk about a different kind of mom guilt. 

Amy J. Brown (2:41)
Today, we want to talk about mom guilt that goes deeper, the kind that settles in our hearts and makes us question our worth, keeps us up at night. That's the kind of guilt we would like to talk about today. Mom guilt is universal, but as special needs moms, we get an extra dose because of the unique responsibilities that come with being a parent of a child with special needs. I think there are a few topics that are common and unique to special needs parents that they feel guilty about. One of them is around the diagnosis. If you want to hear more about our diagnosis stories, you can go back and listen to our first four episodes. They're called Diagnosis 101, that’s episodes 1-4. Today, I want to talk about the guilt around diagnosis. I've shared before that our journey to a diagnosis was kind of meandering, so we didn't know what was going on. I had a lot of guilt around not feeling like I was doing enough or not being able to figure it out. I've talked about that in the past. I would like to ask you ladies about your experience with guilt around the diagnosis because I know this is a common thing that special needs parents feel. 

Sara Clime (4:00)  
I can speak to the kind of guilt that was kind of a process, which I think I say that all the time. Originally, we were told that what he had was a genetic disease passed through the father, just because the doctors we talked to didn't know any better. I remember my husband feeling so guilty. When he realized he didn't have it, he almost felt guilty because he thought, Well, if I had it then I could take it for him (kind of weird thinking). I remember I talked to him and told him just how ridiculous that it was. There’s no way it was his fault and all of this stuff. Well then it switched. We actually went to doctors who knew what they were talking about, and they said, “No, it is genetic, but it just passed through the mom.” Well, everything that I had just told him went right out the window. I was like, well, that's fine for you. But for me, do you mean to tell me that I gave this to my child? I did this to him, and it was so ridiculous. I didn't know any better. If my mom felt guilty because she passed it to me, I'd say, “Mom, you had no idea, you didn't know.” I think it's, I think it's our way of coping, when we have no control over anything. We feel somehow if we can pinpoint something that we can blame, or I don't want to say justify, because you can't justify it. I think it just goes back to the whole control thing for me. I couldn't control any of it, but I could somehow internalize that myself. If I blamed myself, that meant I had control over it. I think that that is a very slippery slope, and it's not true. One of the things that I've just realized is: there's a reason that everything happens. I know that, and I don't have to know that reason. I think that's where the guilt starts to lift is whenever I realize I don't have control. I don't need to have control, nobody has to have control. It's okay to let it go. That's a lot easier said than done. That was the guilt for me as far as the diagnosis was concerned.

Amy J. Brown (6:20) 
I think we think if we can make sense of something, then we can somehow control it, which is not true. 

Sara Clime (6:30)
Before his diagnosis, we didn't get his diagnosis until he was almost eight. He used to go to a daycare, where their steps were so narrow and so tall. It was this old building. We used to force him to walk up because we just thought he was being a kid. “Carry me, mom. Carry me.” No, you can climb these stairs. I remember crying forever, days and days on end thinking, how could I have made him climb those stairs? How could I have made him play soccer? I didn't know better. I thought I was being a good mom. I was being a good mom. I eventually had to come to terms with I was being a good mom with the information that I had. So pre-diagnosis and after diagnosis are just two totally different things. We can only do what we can do. We don't know what we don't know.

Carrie M. Holt (7:26)  
Yeah, and for me, I can honestly say that, in the very beginning, I didn't struggle as much just because Toby's diagnosis can be a combination of genetic and environmental factors. It can be a deficiency in folic acid, which at the time, like we weren't planning on having another baby. I would kind of take my vitamins here and there. Since then, I know that there is a little bit more of a genetic component to his diagnosis. One of the things that I have had to do along those lines is, I can't let my mind go there. So in some ways, I almost just had to shut it off. I have such an empathetic spirit about myself, that I almost had to just shut the emotions off in regard to guilt, because I knew that if I went down that road, that it was just going to be completely overwhelming. One specific instance of guilt has been under those things that I do feel like are under my control. Sara, when you said that about just being in control. There was a time when Toby’s shunt was failing. It was very subtle, and it had been going on for a while. Then when we finally caught it and fixed it, I found out several months later that it had caused some damage to his optic nerves. I felt horrible, like this was all on my shoulders, I should have caught this. I should have, you know, fixed this. I want to encourage our listeners, and I’m even speaking to myself in that moment, and even now as I still carry some of that guilt is: I think you do the best you can in the moment. I don't think the Lord wants us to bear that responsibility. It's hard not to, but I think he's asking us to lay that burden at his feet.

Amy J. Brown (9:40)  
Right. I think Sara, one of the first times we met, we had a conversation around this. I was kind of shocked that you felt guilt around the diagnosis because in my mind, I'm thinking it’s genetic, you know, it's a medical thing. You didn't pick your genes. I didn't offer myself the same grace. I was kind of surprised. I had all kinds of guilt regarding my children. I think we have expectations of ourselves that are unrealistic that we would not have for each other.  I could very easily say to both of you, you know what, guys, I can be a friend to you, but we're not friends to ourselves. We want to blame something. Unfortunately, the thing we blame is us. I've heard mom say I jumped on a trampoline, when I was pregnant. I did this, I did that. It's just like a snowball, this big snowball, but it's hard to get out from underneath. I think you're so right, Carrie, God doesn't want us to carry that at all. It is easier said than done to let it go. I think it's a continual retraining of our mind that we did the best we could. I definitely think that’s it.

Sara Clime (10:55)  
I said something in my podcast. God doesn't speak that guilt into our hearts. That doesn't come from him. He doesn’t say, “Well, you're kind of guilty, because you didn't do that. She didn't do that.” He sent his Son to die on the cross for our sins. It didn't matter what they were. These aren't even sins. He doesn't speak that into us. That's not the truth God is speaking into our hearts. That's completely Satan speaking those words of doubt and guilt: you should have and you better have, or you could have done better or anything like that. That's what I would encourage people to understand, too. Is that guilt? That is not something that comes from our father that comes straight from Satan.

Amy J. Brown (11:47) 
I think another area that we struggle with is faith. It's kind of tricky to talk about because in our faith we may be struggling with guilt that we don't have enough faith, or that we're doubting God. We see somebody else who just seems to handle it well. People you know have a really well intentioned Bible verse they share with us, or some kind of encouragement that just makes us feel more guilty because we don't believe that right now. It drives us further and further underground. It doesn't allow us to be open about our doubts. I have shared this in the past. I remember when I first started writing about our issues with our daughter, a really sweet lady said to me, “I can't wait to see how God showed up and what he did.” I literally went into my bed and bawled my eyes out. I was mad. I said, “God, what did you do? You didn't do anything.” Then I felt guilty because you just can't go to the church, coffee hour and belt out: God didn't do anything. That's just not okay. First of all, let me just say if you are there right now, it's okay to be there. God can handle that. He really can. But in Christian circles, sometimes people are well meaning. I don't think they understand sometimes what their words do because we're struggling with so much guilt around this and doubt. I would love to hear how you guys felt about that and what encouragement you have for our listeners in regard to faith and doubt, and guilt in regards to all that.

Carrie M. Holt (13:42)
I think what I would like to share is just that I’m learning to understand the difference between accusation and conviction. You know, because the devil accuses. I talked about this on my individual podcast, too, not to be redundant, but the devil accuses. Sometimes he will take a tiny thing, and then he twists it into a lie. He takes a moment of doubt, or a moment of fear, or even our moments of trauma, and we start to believe these things about ourselves, about our motherhood, about the decisions and choices that we've made. That's not the Holy Spirit. He convicts, his conviction is gentle. It's not condemning. It's not shameful. It is not full of contempt. I would just encourage our listeners, only you know your heart, and God does but only you know the voices that you're listening to. We have to just daily make it a practice of which voice are we going to listen to today? When the critical voices are there, and the lies are there, and accusations are there, we're saying, not today, Satan. It's on a T-shirt. Lord, show me where it is that maybe I do need to improve, or I do need to change. But above all, just help me to believe the truth of Scripture that you're near me, you love me. You know, Psalm says that the thoughts that God has towards us outnumber the grains of sand. If we sat down and all of us made a list of the things we liked about ourselves, I doubt it could fill a page, right? The thoughts that God has towards us outnumber the sand, his precious thoughts toward us. I think we have to just lean into that, and it's a continual sometimes even hourly choice to listen to God's voice and not listen to the accusations from Satan. 

Sara Clime (16:20) 
See, there's the devil again twisting it up. I love that analogy of the devil's, you know, he twists your words, because I'm a very visual person. So, I've always told my kids from when they were small. I would always make up stories or kind of help them visualize what God is or as much as we possibly can. I would always tell them certain things that they would feel bad about, or they would think poorly of themselves. The devil is over in the corner. I would always tell them that it's like the devil standing in the corner, with his hands folded, crossing his legs, laughing to all the other demons and saying, watch this, it works every single time. Every single time. These moms feel guilt. Watch this. Every single time they fall for it, every single time. So whenever my boys would feel guilty, and I need to use this on myself, too is: is Satan in the corner? You know? Is he the one stirring up the pot here? Is he the one doing this? When you said, Carrie, whose voice are you going to listen to? It is so true. God knows that we're human, and we're going to listen to the wrong voice occasionally. That's what I would encourage people too, that you're going to have doubt, you're going to have anger, you're going to have guilt, then you're going to  think okay, fine it's not my fault, it's God's fault. You're going to have those thoughts. God already knows you have those thoughts. He knew that before you had them, but work through them. Like you said, listen to the right voice.

Amy J. Brown (17:59) 
It's interesting too that on this theme of listening to the wrong voice, a lot of times when people come to us and give us a verse, or something encouraging, it's meant to encourage. Like when someone says Romans 8:28 ‘All things work for good.’ Of course, if you already got your guilt blinders on, you're gonna immediately take that as a curse, not a blessing. So sometimes, I think it is true that God works all for good. It doesn't mean everything's gonna be great. It just means that he's working for our good, and even in the midst of me having my hissy fit on my bed, I still believe that to be true. So I love that whole idea. I really believe that everything that happens in our life, God brings into our life. So when some nice church lady says something to you that she really does want to encourage you,  just take it as that. She's not pointing a finger at you. It's kind of ridiculous when you really start thinking about it.

Sara Clime (19:05) 
If that same lady shares a recipe, she's not telling you you're a horrible cook. She's just sharing a recipe that you enjoy. So when she gives that advice, just say thank you.

Amy J. Brown (19:17)
It's all about changing your mindset and taking it as truth and not letting Satan twist it, which boy, that happens a lot, doesn't it? I love that. I love that, Carrie, that is really good. I'm sitting here thinking. I will say as a mom of a kid with invisible disability, I have been on the receiving end of some not very kind comments about my child. One thing that helped me with that, you know, like, well, you just need to discipline her. I would say why do they say that? Why can't they understand and my therapist said to me, nobody can understand it, you can hardly understand it. So you have to take their comments from their perspective. Unless they actually live in your house, they can't understand it. Honestly, unless there's somebody that you really love and trust, those words need to bounce right off your brain. I think that's good advice, too. When you think about the things people say to us, for the most part, they mean well. It's easy sometimes to get jaded after a while. That's when we have to take it to God again. Sometimes I'll say, when I have a situation like that, where I'm really bothered by something that someone said to me, and I feel guilty, and I can't retrain my brain, I will say, to God: here's the situation, here's what the person said, I don't know what to do with it. I'm just gonna lay it at your feet, you know, because I can't quite get to the point of holistic thinking, I guess is the word I want to use. 

Sara Clime (20:54) 
So I like how you brought up the negative comments too, and how we feel guilty over some negative things that are spoken to us. In my instance, I have this cute little blonde boy in a wheelchair that people know is terminal, they're not going to give me… He could set fire, literally to something in a grocery store, they would say, “Look, he figured out the lighter.” They're not going to say anything negative. Those of you that are listening, that have children with social or behavioral issues, you're going to get those negative comments and I think that is when that third voice enters that picture. So I think Carrie has unintentionally done the theme of the show. “Whose voice are you going to listen to?” Right? Again, what it boils down to is, their voice is not the important voice. Like you said, Amy, they don't live in your house. They don't know that reality. So they're speaking of the only reality they know. So I'm glad that you brought that up too, about the negative.

Amy J. Brown (22:01)  
Yeah, that's a good point. Alright, here's a big guilt trigger, where we're all going to shake our heads and say, yeah that is the other kids. I know, this is a guilt trigger, because we've actually had listeners ask us about it. I'm gonna start by saying this. I've been a mom for 28 years, I have actual grown adults in the world that are out in the world. I just want to encourage you moms, they're going to be okay. They really are. Are they going to be perfect? No. Can you meet all their needs? No. Even if you didn't have a special needs child, you could not meet all their needs. We have to give it to God. He doesn't ask us to meet all their needs. We had a very chaotic house,  and our daughter with reactive attachment disorder and fetal alcohol syndrome is number four. So my three older bio kids were not under her. They aren’t younger than her. They weren't much of a victim of her behavior, but they saw a lot of chaos. There are lots of times I had to stop what I was doing with them and go deal with something that our daughter was doing. They're okay. Now, I will tell you, they've all had to deal with the trauma of that. They've all been to therapy, every single one of them. That's not a bad thing. I've encouraged it because they have to figure it out. They had a situation in their family that they didn't expect either. They didn't know how to deal with it, no matter how much I did my best. I didn't know how to deal with it. It's okay that they went to therapy. They've worked through some things. Here's the thing I will tell you about them. They have really sensitive and empathetic hearts for people with disabilities, specifically invisible disabilities. When they see a kid lose it in the store, they're the last people to judge. They feel like they can spot an invisible disability a mile away. Maybe that's just because when you live with that, that's what you notice. That’s my encouragement from a mom that has adult kids, they will be okay. It won’t be without its bumps, but none of life is without its bumps. That's when we take it to God. 

Carrie M. Holt (24:20)
I was just thinking as you were talking, Amy, when did we think that our child, or ourselves needing to go to see a therapist was a bad thing? It’s not. It’s not. I feel like the areas where we struggle the most, is where God shows up the most. 

Amy J. Brown 
In some circles it is. 

Sara Clime (24:46)
I think it circles back to the guilt. We're not perfect. What have we done wrong that our child would need a therapist? That's where it circles right back around to guilt. This is really not appropriate, but I hope every listener can take this for what it's worth. My husband and I have kind of an inside joke between the two of us. He will look at me and he'll be like, well, everything we do parenting wise, is in relation to how many therapy sessions that we are going to have to pay for. When he had the talk, the bio talk, with our oldest child, he came in and said, “Well, there's three family sessions.” I said, “what did you do?”  Again, there’s nothing wrong with those therapy sessions. Even our inside joke, it stems to what have we done wrong to cause that? It’s not. It's okay. They need that therapy. Quite honestly, part of it might be because the last thing they want to do is burden you with it. They need somebody to talk to as well. It's not negative towards you, it's how they're gonna deal with it in a positive way. It's a good thing for them to learn how to deal with that on their own.

Amy J. Brown (26:00)
I want to share just a little something here. I took my oldest three to a family therapy session. I went in, as the mom like okay, therapist, let's listen to my kids and help them. It ended up impacting me more, because in that space, I was feeling so guilty that I had not connected with our daughter. I kept blaming myself that I had not connected with her. even though I now know as a reactive attachment kid, they don't connect with the mom. My three kids were sitting there,  and they shared some things. First of all, they said, “Mom, we aren't connected with her, either.” I looked at these three amazing, relational kids and thought, wait a minute, if they're not connected with her, why am I blaming myself number one? Number two, to the therapist they also said this, “We're tired of every time that we go somewhere like the zoo, you can't be there because something happens, and you have to leave.? The therapist actually said, “You know what, go places without her.” At first, I never would have done that on my own. I would have felt guilty. That's a bad mom. People don't understand it. Why would you leave one kid at home? That was probably worth all the money the Brown family has spent on therapy to get that piece of advice. We were able to say, okay, she has attachment disorder, she loves a new person to hang out with. She doesn't miss us. It's okay for us to go. I am so glad that I took that step with our kids. So just that little story there was worth doing that. So my encouragement to listeners is that it's not a weakness on your part. My husband calls my therapist adult supervision inside my head. You just need another wise adult speaking into your life. Who wouldn't want that? Right? Who wouldn't want that? 

Sara Clime (27:54) 
When you're talking about doing things without the child with disabilities, I think that goes for the physical disabilities as well. We focus so much on inclusion. They need to be included. Are they being included at school? Are they being included at church? Are we including them? We focus so much on that, that we lose sight. My sister and I both were able bodied, my mom did stuff with me without my sister, and that was okay. It had nothing to do with the thought that I was not as good as she was or that she wasn't as good as I was. It's okay to do things without that child. Even on vacation, we would make sure 99% of everything we did involved the whole family. If my oldest, who was super athletic, wanted to go jet skiing in the ocean, we're going to go jet skiing and ocean with him. One of us will, the other one will stay with our youngest with physical disabilities and find something fun for him to do. It’s okay. Sometimes not being included is the best thing for everybody in those specific situations.

Amy J. Brown (29:01)
Great point. That's a great point, Sara. We've talked about kids, and we've talked about faith, and we've talked about diagnosis. One of the things that we had talked about earlier, ladies, is a lot of them all we do is just commiserate with guilt. I would like to ask you, as we think about our listeners, what kind of encouragement can we give them? Of course we commiserate with you, we get it. Trust me, we get it. How can we move past commiserating to helping them overcome guilt and helping them connect? I think that we've said a lot of things, but I don't know if you guys have any closing points you want to make or encouragement you want to give? 

Sara Clime (29:55)
Oh, I can give a story and it actually is about marriage. I think that it suits this discussion especially well. My husband and I went through a really extremely hard time years ago. I worked outside of the home. This was before diagnosis. I would come in, and I would throw my purse down. I've talked about this before. I would throw my purse down, and I would say, “my husband is such a jerk. He did not do the dishes.” Maybe I didn't call him a name, but he didn't do the dishes. This morning I'm five minutes late because he didn't do this, or it was always something. It might not be a flat out negative thing that I said about him, but it was the way I talked about him. Fast forward a few months that I'm working with this coworker, and I said something about my husband, and she said something negative about him. “Well, figures.” I felt so defensive of him. I thought, how dare you? He's a great guy. I stopped to think, but I've never talked about him in a great positive way. I decided for one week, I was not going to say anything negative no matter what he did. I don't care if he left every dirty dish on the front seat of my car, I was not gonna say anything negative about him. I was gonna come up with something positive. One week turned into a month, and soon she really liked him. I realized what I was putting off, was changing her view of that. I always liken that to how do I talk about my child with disabilities? How do I talk about TJ? If people say, “Oh my gosh, your life is so hard.” Part of that makes us feel good. We are superheroes. I mean, if we're honest with ourselves, the whole, “you're such an inspiration,” it drives us crazy. There's a part of us that's like, man, we are, we are. We are always busy, we're always tired. We are always tired, I'm not saying that we aren't. If we're always talking about the hard things in our relationship with our child, or with each other in this life, people are never going to see the joy that we have in this life as well. It's important to feel it. It's important to talk about, and it's important to rely on people. When the three of us first met, we all have such different stories, but we connected because of our mutual feelings: grief, guilt, and all of that combined. It's important. I'm not saying to ignore it, but I think it's important to  also let people see the joy in the life and to see the good parts of this story. I think that that's going to change the dynamic of how they see things as well. I don't want people to see my son as a burden, but if I'm always talking about the burdens, if I'm always sharing the burdens, that's what they're going to see. That's what they're gonna feel. I don't want that. 

Carrie M. Holt (32:45) 
I would say too, just along those lines is, I think it's really important to focus on. I know, it's a cliche to say focus on the positive. This is kind of going off what Sara said, but I have such a tendency to think about the negative: what I didn't get done today, I didn't spend time with this child today, I didn't do that today. I've been learning this just from watching how when God created the world, he took an evaluation at the end of every day, and he said it was good. When I take the time to look at: what did I accomplish today? We homeschool? What is the list of things that we did. I also have had the opportunity to, because of hindsight, my oldest is almost 18 to look back at pictures recently and activities that we did together. I read to my kids almost every day, even my teenage boys. This is just something that's been really important to me. When I think about all those minutes that have added up, that's a lot. I want to encourage our listeners to think about this. If you gave 10 medications this morning, and you threw in a load of laundry, and you took your child to school, you did some amazing things today. I think that's what we have to focus on. We have to focus on how God has equipped us with all of his power, that resurrection power is what we have access to through the Holy Spirit empowering us. He is going to do amazing things through you. He does amazing things through you every single day. I just don't think we recognize it sometimes.

Amy J. Brown (34:42)  
I think what we do is we take our lack and our inadequacies, and we put this big old magnifying glass on them. Instead, if we could learn to lean into those inadequacies and say, “God, I don't know what to do. I can't do this, and we give them to him. So I think that's really good. I would also say guilt and shame loves the darkness and loves quiet. So when you're struggling, take it to God. Take it to a trusted friend. I guarantee any friends, you take your guilt to and say, “I feel really guilty about XYZ,” they're going to say, “What?” They're going to speak life into you. So I would encourage our listeners to do that too. Sara, would you like to close us in prayer? Sure.

Sara Clime (35:27)  
Father, God, thank you for every wonderful thought, and act that you have about us. We know that all of your love and your wonderful thoughts about us, they are more than the grains of sand. We just appreciate that. We thank you for that reminder today. Lord, we thank you for your love and grace. It's never ending, and it is not deserving, but you still decide to pour that out on each one of us. We know for every guilty, negative thought that we have, you have such positivity and grace and mercy and joy that you are speaking into us. I pray that everyone listening today decides that it's your voice that truly is the loudest and the most important for us to hear. In your precious name. Amen.

Amy J. Brown (36:26) 
Thank you for joining us this week on Take Heart. If you are enjoying our podcasts, could you do us a favor and leave us a review on whatever platform you use to listen to our podcast? You can follow us on Instagram or Facebook @takeheartspecialmoms. If you have any questions or comments or would like to share your story with us, follow the links in the show notes. We love hearing from our listeners. We hope you tune in next week. We are really excited to share with you a series of interviews with other special needs parents. So please listen in next Tuesday as we kick off our interview series.