Take Heart

Cyclical Grief of Special Needs Parenting

• Amy J Brown, Carrie Holt and Sara Clime • Season 1 • Episode 37

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The grief of a special needs mom is unique, isolating, overwhelming, and continuous.Today, Amy, Sara, and Carrie discuss how it changes throughout the special needs journey, practices for processing it, mindsets for dealing with its constancy, and important hopeful reminders how God is near to the brokenhearted. 

April 27, 2021

Timestamps & Key Topics:

  • 0:20-     Intro
  • 1:03-     A Unique Grief
  • 3:50-     Greatest Griefs
  • 9:48-     Isolating Grief
  • 11:48-   Changing Grief
  • 19:30-   Grief Practices
  • 27:05-   Hope in Grief
  • 32:26-   Closing Prayer
  • 33:41-   Outro

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Sara Clime  0:20  
Welcome to Take Heart where our goal is to give you hope and offer insight and encouragement so you can flourish in your journey as a special needs mom. Each week, Amy, Carrie and Sara will explore a theme, share an inspiring story, practical tip, and an encouraging blessing using our combined experience over thirty years of parenting children with special needs.

Sara Clime 1:03
Hi, thanks for joining us today. I'm Sara, and I am here with Amy and Carrie. We are talking about grief this month. Grief is such an important topic for society as a whole. It's not a fun one. What we're here to talk about today, though, is grief specific to special needs moms. We live with grief on a continuous basis. As I was preparing for this podcast, I started with the different types of grief. I was honestly surprised at how many different types of grief there are, out there that are defined. So just to name a few. There is anticipated grief, continuous grief, recurrent grief, chronic grief. Then there's depression and PTSD or post traumatic stress disorder. That's where I stopped. I could seriously go on and on, but I got a little bored and a little overwhelmed, to be quite honest. I would venture to say, we have our own special type of grief though. It's a grief only caregivers know. I dare say as long-term caregivers to our children with special needs, we most likely experience each different type of grief. Sometimes all together and sometimes separately. Our grief is ongoing. It is anticipated because we know something else will eventually arise whether that's tomorrow, a week from now or a year. We know it's out there. We have a form of PTSD because events or situations trigger traumatic events: be that diagnosis day or the devastating event itself. We grieve what has been lost, our dreams for our child, our grandchildren, possibly retirement, whatever that looks like for you. We also grieve what is lost right now: normal schedules, normal sleep schedules, close relationships with the child who may or may not be able to be close to us, typically developing children, times, finances. I could go on and on with that as well. Then we also grieve for what will be or what will not be in the future. Possibly you have a terminal or medically fragile child, and you're grieving their deterioration. Maybe you're grieving because you know your child with attachment or behavioral issues may not want or they just don't know how to have a close relationship with you. Maybe you grieve for your own dreams of retiring and traveling with your spouse. Fill in the blank here. Whatever you have grieved, are grieving now, or will grieve in the future, the process of grief can be daunting and can feel never ending for caregivers. So one of the things that I want to ask you ladies today is. Let's start with Carrie, what has been your most profound experience with grief so far in regards to your child with special needs?

Carrie Holt  3:50 
My answer is twofold. And that is probably the greatest thing that I have grieved was when our son had his four to six hour convulsive seizure when he was five or six. Undoubtedly, it was just one of those things that I dreaded. I didn't want my child to experience it. I didn't want to experience that. I had just never doubted God in those moments like I had. It was March 17th and 24th. Those dates are forever etched in my memory. I remember that my kids were on spring break, and I lost all that time with them. So it wasn't just the grief of loss or fearing whether our son would have function again. I mean, he ended up going back on his feeding tube full time and not being able to hold his head up after that experience because he had so many seizure medications in his body. We had to move to the rehabilitation floor, and then he came home on Good Friday. I think that that's just one of the things, and I think it was just so difficult because it was just so unexpected. I find that the grief over the things that aren't expected is sometimes the greatest or the hardest, at least for me to deal with. Secondly, I think it's also been walking through watching my son grieve his own process, his own grief process that he has started. The older he's gotten, the more aware that he's been that he won't walk ever on this side of heaven,  that he can't play basketball like his brothers do. His questions that are so hard to answer, and to hold. Why did God allow him to be this way? Why can't he heal him on this side of heaven? Just recently, we were in the car together, and we were listening to Steven Curtis Chapman's Beauty Will Rise album. It's an older album, certainly. If you don't know it, I would highly recommend it. It walks through their own grief when their daughter passed away, tragically. He just started asking me questions and telling me this story. He said, "Mom, every time I go into surgery, right before I fall asleep, I ask God, are you with me?” Of course, by this time, I'm sobbing in the car, as we're having this conversation. I said, “Well, what does he say, buddy?” He said, "definitely." It's just hard, because I wish that I could take away his pain, his suffering, even his doubts, but I know that's also letting him work out his own faith and work out his own journey and relationship with God. So those are two areas that have been the greatest griefs in my life.

Sara Clime  6:50  
Yeah. I can say that, when your child is grieving, it's so much harder than when you're grieving. It’s just amplified. So yeah, I would be bawling mess in the car, too. It's a great story, though. I love it. How about you, Amy?

Amy J. Brown  7:09  
Well, for us, it's a little bit different. We don't have a specific moment where we had a diagnosis.  I would say one of the hardest moments is several years ago, when we had to send our daughter, who was 10 at the time, to a residential treatment center, because she was a danger to herself, and to our family. At that point, I was just exhausted and feeling shame and guilt that I had to do this. She has reactive attachment disorder where they can’t attach to you. When they push you away, and their behavior is harmful to others, there's a whole lot of mom guilt that goes in there because you think if I just have the right discipline system, or the right chore chart, or whatever, I would be able to fix this. It's not something that you tell a lot of people I think. If your child is in the hospital, I assume that you have people you reach out to, and they understand that the child's in the hospital, but not so much in this. So the initial grief of making this decision, I'll never forget it. I was sitting on my back porch and said, she has to go or I have to take the other kids. My husband and I found a place for her to go. I really felt such grief. That was like a flashpoint, but it's been a continual grief of not having a relationship with her and our son. It pops up in different ways. It pops up when you see another 17 year old girl with her mom, and you think, oh yeah, that's how old my daughter is. We’ve never had that relationship. So, but definitely that moment of just making that decision was one filled with fear and grief. It's just been a continual, steady drip of grief, I would say since that day.

Sara Clime  9:04  
We've talked about this before on other podcasts too. With our children, their physical disabilities, I mean, my son does have behavioral and cognitive, but people see him, they see the cute child in the wheelchair first. Like you said, we have anything that we need, people are there, we can talk about it. I would think in this situation because your children's diagnoses are so misunderstood that it makes the grieving process harder. Would you say that that's true? How have you coped with the loneliness aspect of the grief as well? Can you speak to that? 

Amy J. Brown  9:48  
Yes, it's definitely isolating because people just don't understand it. I don't expect them to understand it because I don't understand it. You know, we're made for connection. We're made for that. So it's hard to understand a child that can't do that. For me, the thing I did wrong was to continue to isolate myself, I was just so afraid of being judged. I was judged by a lot of people and some very hurtful things were said about our family. I've gotten a lot tougher skin, since that day many years ago. I mean, I'm a lot tougher skin now. For me, the thing that's helped me work through the grief is therapy, to have a counselor who says, “Look, this is the truth of this attachment disorder, they can't attach to you. This is nothing you've done wrong.” It doesn't mean I still don't grieve that, but it's helped me cope with it a little bit better and look at it differently. I always say that if your child was in a wheelchair, you wouldn't expect them to get out and walk up a mountain. So I have to think of it like that, right? I can't expect it. Lowering my expectations has actually helped me a little bit with that grief process. It’s also very helpful that I have other children that I have healthy attachments to. I have several friends that that's their only child, and that is very devastating. My heart goes out to them. 

Sara Clime  11:17  
One of the things that you had said that makes me think of this, and I would like for both of you to speak to this as well, as you said, yours is an ongoing grief. I can only assume that since you've had different stages, the process of grief has evolved or changed over the years for you. How has grief changed for you or evolved? I don't know, maybe you've regressed? How has it changed for you over the years?

Amy J. Brown  11:48  
I would say, a great description of grief is it's a hole in the floor, and you fall into it a lot initially, and then the hole always is there, but you learn to walk around it. I said this on my podcast, I've learned that grief will not kill me, that God, His graciousness is there and that there's beauty in every day. I just can't let it consume me. As I process through, I have moments where definitely, it flares back up, but I just keep walking towards God. It doesn't go away. It doesn't make it all better, but I know that he's holding me. I think if you've listened to any of our podcasts, you'll know I'm a big old stryver. So learning to lean onto God in that process has helped me a lot. It's not easy. I just have to keep reminding myself that this is the life that I've been called to and that he will equip me for that.

Sara Clime  12:50  
I know that for me. I used to try to power through the grief. You hear so often as people always say, “You're such an inspiration, or I couldn't do what you do.” Whether or not you believe it or not you internalize that. For me the process of grief is when they say that they're not saying that I shouldn't be upset. It really doesn't matter what they're trying to say when they say that. If I need to cry, I need to cry. If I need to call my therapist or email her and say SOS, then that's what I do. Grieving is very personal, but it's personal between you and God. Like you said, God is there. He is right next to the brokenhearted. It says that in Scripture. That's what I always think, for my process of grief. However I'm feeling at the moment is the way I need to feel. As long as I'm bringing God into that grief. He wants to be right there next to me in that grief. So that's kind of how it's processed for me, or changed over the years. How about you, Carrie, how has your grief evolved or changed?

Carrie Holt  14:03  
I think one of the things I've learned is, I used to kind of rail against it, like I felt it was weakness, the tears that would come at unexpected moments, the anger, the weariness. Sometimes it’s the day after day grind of caring for our son. When I find myself grieving, it's like, well, what's wrong with me? Why can't I just buck up and handle this? I think I've learned two things just like you've both said. It's important to lament it, and lamenting it means that we're taking it to God. I've learned to, I don't want to say necessarily embrace it, because it's not always fun to grieve, but I've learned to welcome the opportunities that I can to take it to the Lord. It feels like it's this invitation to again, be honest with him, not filter what I'm saying not filter my feelings, but just, lamenting it. In that moment, there's just that hope. I think that the process of it changing through the years is learning what to do with it when it comes and having some of those strategies and having some of those processes to deal with it.


Sara Clime  15:29 
I know, specifically, you have an exercise, and we'll talk a little bit more about this later. Actually, we'll just have information in the show notes. Make sure to go on to Carrie’s website at www.carriemholt.com to check it out. It's called Eight Practices for Processing Grief. I have to admit that whenever I saw that I thought, practices and processing, it’s action. I can do it. I was so excited. It’s not eight feelings of grief. I don't want to know the feelings. I want to know the practice, I want to take action and I want to be able to do it. I thought, I need check boxes. But I love this exercise that you have. One of the things that I overlooked whenever I first started this was grief. We first received TJ’s diagnosis, it was terminal, and the advice was you have 15 years, take them home and love them. That was about the diagnosis wrapped up in a few sentences. I remember feeling the grief. I thought surely that's not how I felt. I didn't label it as grief because I thought he's still with us. What I am feeling cannot be grief. Once I realized that it was grief, and that it is a continuous process. Like Amy said, it's something that's ongoing. I think that is one thing that I think really joins all special needs parents together is that we don't have the same diagnoses, but we have the same feelings and the same fears. So when it comes to that, I think that that is just a beautiful way. It's not the greatest connection. But I'll take a and I'm glad that there's other people that understand me. I would like to see if you have a specific practice, and when you know that grief is coming with hospital stays, infusions or whatever that looks like, but there's also the surprises. Amy, I would think that you have surprises a lot. You also know that the surprise will come. There is some consistency that it is going to come. I just don't know when it is. For me, whenever we traveled to Baltimore every 28 days, for about two and a half years, for this clinical trial. Then we also had his doctor's appointment out east. We couldn't afford both of us going out, so only one of us did. I knew every time the cardiologists, the pulmonologist, or the neurologists would give us the stats: his lung function has decreased by this percentage, or his heart function has decreased by this percentage. I knew it was going to come. I knew I was alone with my child, I had to somehow navigate the Baltimore chaos to go back to the hotel. But I came up with a way that I would use after every doctor's appointment. I always tell TJ, I didn't like hospitals, and they make me feel dirty. It's become an issue now because now he thinks I have to take showers. I'd always go in the bathroom and take a shower, or at least turn the water on and that's where I would cry. I think it helped me. I'm really going somewhere with this, so stick with me. I think that it helped me because as I was in those moments, I was able to stay strong. I was able to power through it at the moment because I knew I had given myself some space, and I just needed to make it back to the hotel, get in that bathroom, and I was going to have my time with the Lord, with my grief, with myself. Do you guys have any specific practices to process the grief? I know you have a ton of hospital stays, Carrie, so is there a way that you know that's coming up? I'd like for both of you to speak to that. Carrie, would you start with that part of it?


Carrie Holt  19:30 
I think for me usually a specific practice is just worship music and praise. I know I mentioned that album earlier, but there's another album by I Am They. I can't remember the name of it, but one of those songs on there is Scars. I sometimes play that music. I know that sounds kind of strange, but listening to the hard songs about pain and about doubting, but also about having faith. There's such a cathartic release for me when I can sing, cry, and pray, and, let out the grief, let out the pain, and the sadness and even the anger over what we've had to go through. It just helps me to release it, instead of keeping it bottled up inside because you put that armor on. I think we all do this as special needs moms. We have to gear up, We have to buck up. We have to pick ourselves up by our bootstraps. When you have kids who can read your emotions, and they can understand what's going on, you don't feel like you can necessarily cry in front of them all the time. You're in the middle of a major hospital stay or major decision making and you have to be able to think. We can't be a hot mess. After that, it's time to release it. It's one of those things that you can't force either. I learned that I can't necessarily say, “On Tuesday, three months after this hospital stay, I am going to grieve what has just happened.” It just comes unexpectedly. When it comes, I have my journal, writing out how I'm feeling, and then I have my music and that cathartic release of prayer praise, praying, and crying out to the Lord.

Sara Clime  21:30  
That's great. How about you, Amy?

Amy J. Brown  21:32  
Our issues that come up are, as you say, behavioral. It might be a call from the principal. For some parents, I haven't had this yet, but a call from the police. It may be a child that runs away. In those situations, like for example, when somebody gets expelled from school, or when I get that call from the principal, it's such a behavioral issue that is probably harming somebody else. Your first thought is I got to go deal with this. I have to walk into a situation where I already feel guilty. My child has caused some kind of emotional or physical pain to somebody. I already feel guilty that the cafeteria worker at the school that witnessed this has no idea what kind of parent I am. There's all that's going through my head, and I have to go in and deal. There's a lot of guilt and shame in those moments. I've gotten better at that. I go in and deal. I get on my “mom armor” and go in and take care of the problem. Then the next day, I have a practice that I do. What it is, I write. This is what happened. So and so was expelled from school. This is the story I was telling myself: I'm a really crappy mom. This is what I know to be true: that God has this in his hands. That process settles me right down. I would say sometimes when we're constantly putting out fires, especially moms of kids with behavioral issues, you have to recognize that you're grieving. Sometimes my grief looks like overdoing. Sometimes it's not crying, because I'm kind of mad that all this is happening. It looks like anger. Sometimes it looks like wanting to sleep a lot or whatever. Recognizing that too, I think makes me realize, okay, I'm feeling grief. I'm grieving because of the situation that we're in with this child. So I think that's another important part, being able to recognize how you react and what you are feeling, which may not look like what we think as grief: the tears and the crying. Definitely, there's those moments too. I think that's an important part for me too, to kind of get outside my own head a little bit and really write through it: this is what happened, this is what I was telling myself, but this is what I know to be true. That is so grounding for me.

Carrie Holt  24:01  
May I add to that? One of the things that I have learned to help, just a specific practice is there are definitely moments especially around anniversaries where I have what I call situational depression, where I just don't feel like doing anything. I have to force myself to do laundry or even do school with my kids. I used to feel really guilty about that. I have learned to speak truth to myself that this is just for a time. This is just right now, and also the practice of not assuming that I'm always going to feel this way that the future is always going to look like this. This is just a season right now. I think that practice of being gentle with yourself is really important too. 

Sara Clime  24:57  
Yes, absolutely. Absolutely. Not to get started on a psychiatric tangent, but like you said you have situational depression, and I have seasonal. There are certain things that there's no rocket science. I have a light lamp. Certain times of the year, I sit in front of it for 5 to 10 minutes. Sometimes my husband has to say very gently and very sweetly, and I still take it wrong sometimes. “How's the light lamp? I haven't seen your light lamp out.” I’ll get it. Just because we have the special needs of grief doesn't mean that we still don't have the other aspects of life that go along with it. I think taking care of that, like you said, Amy, your exercise where you say : this is what happened, this is the truth as I saw it, or this is the situation as I saw it, and this is the truth behind it. I have something similar I do for fear because for me, my fear with my son just can be so overwhelming. I know there's no truly overcoming grief. I love that's why, Carrie, you said it's eight practices for processing greed. But it's not dealing with it, or faking it until you make it it's, it's processing grief. You never truly overcome it. Not to get too Pollyanna, but can you share with us how grief and the duration of grief that we've all been in for a hot minute? How has that become a positive thing? How can you turn that into a positive thing in your life? How does a special needs mom, who is listening to us right now, who is right in the beginning of it, and they're still in that diagnosis fog, how do they really start to look long term and think, okay, I can do this? This is something that will come of it. 

Carrie Holt  27:05  
I would tell the listeners that, honestly, some of it was just changing that expectation. I didn't realize how closely grief and this special needs journey walk hand in hand. It's not something to conquer. Like you said, it's not something to overcome. It's not something to be final, but it's something that and again, I don't want this to sound strange, but that we kind of embrace it. It's something that God can use to draw us closer to him. We see it with David in Scripture. He would cry out to the Lord and say, “Where are you? You're hiding your face from me.” Then a few verses later, he would say, “I trust you. You're my refuge, you're my stronghold.” I know that he didn't come to that conclusion right away. He's a poet, he's a songwriter. Sometimes poetry takes years, months, it takes time to process. I would just encourage our listeners that might not understand grief. You’re just learning this process, to give yourself grace. It does take time. It is a tool. It is something that with our choices that we can draw and take that step closer to God. I think, Sara, you were quoting the Psalm that says, “The Lord is near to those who are brokenhearted and saves those who are crushed in spirit.” There is hope on the other side, no matter what, we have hope and on the other side of our griefs.

Amy J. Brown  28:53  
I think I would say that, that is great, Carrie. I call it looking for God in the hidden places and in the dark places. I've had a lot of grief in my life, even unrelated to being a special needs mom, and I've had to learn to look for him in the everyday. I'm not trying to sound Pollyanna about that. It literally sometimes is the bird on the feeder outside my window, just anything that's going to point me to God. Scripture and writing down the things in my life that lift my heart a little bit, even if it's a really hard day. Carrie, you're so right that it is a process; you won't always be this low. You kind of write it out, and then it kind of ebbs and flows. Scripture says that he walks beside us, always in the valley of the shadow of death. I remember that over and over again, that he is walking beside us. I would also like to say that Carrie’s resource. I read it. It's phenomenal. If you are struggling with working through that grief, there's a lot there. There's a lot there that will help you work through it. Look for him in all the hidden places. It's almost like you're taking little sips of air as you go, because you can't take a big breath.  I call it little sips of grace along the way, and that's kind of how I get through some of the really hard days.

Sara Clime  30:22  
I think once you learn how to process grief, and you allow yourself that space, then you allow others to help you, and you turn to God, all of those things combined really teach you how to fundamentally handle a lot of other emotions that come with this journey. I know for me, once I admitted I can grieve my son. Yes, he's alive. Yes, I love him. I have a phenomenal life. I love it. Once I was able to grieve the dreams we had, or the future that I know is going to be difficult, I was okay with that.  I stopped beating myself up about it. I stopped talking about the guilt, which by the way, we're going to be talking about guilt next month, because that's a biggie. I think once you accept the grief, and you lean into it, and you trust God and those around you, it really is easier to help yourself with other situations. Amy, like you said, “Well, we have special needs children, so no other grief whatsoever comes your way.” Life is going to happen.

Amy J. Brown  31:37  
I would say to that people don't understand grief. I say in my episode, death is not a prerequisite for the only thing we grieve. Find people that will walk with you because there are people that will say, “Well, what are you grieving for because she's alive, or she's this or she's that.” No, I'm still grieving these things. It's really important because I think if you're around somebody who shuts it down, then you're gonna shut down. Find your people that you can safely grieve with, and who understand. I think that's a really important part of this, too.

Sara Clime  32:13  
Yeah, I agree. Thank you, Amy. That's a really good part of it. All right. Well, thank you guys so much. Carrie, would you close this out in prayer?

Carrie Holt  32:26  
Dear father, we are just so grateful that you are near to us in our grief, that you are near to those who are brokenhearted.  ask that you will be near to those who are listening right now. Be near to those who are grieving, who are crushed in spirit because sometimes we literally feel crushed. I pray Father, that they will feel your presence, and that they will understand the truth in the hope in Revelation where it says, “that the dwelling place of God is with man. He will dwell with them and they will be his people. You will wipe every tear away, that death shall be no more, neither shall there be mourning or crying or pain anymore for the former things have passed away.” Lord, our hearts long for that hope. Our hearts long for that day when we will be complete and whole and in your presence fully. I just ask that you will encourage our hearts today with that promise and that love and you will be near us and our grief. In Jesus’ name. Amen.

Sara Clime  33:41 
Thank you for joining us this week on Take Heart. If you are loving our podcast, would you do us a favor and leave us a review on whatever platform you're listening to. 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 our show notes. We love hearing from you guys. Listen in next Tuesday as Amy shares her thoughts on guilt.