Ep. 84: Grieving Our Child’s Medical Complexity w/ Carrie M. Holt




Request Transcript


Grief is something that most parents of disabled/medically complex children experience. And as Carrie shares in this episode, it never goes away. Instead, it shifts and evolves.

She also explains how difficult it was to process her grief in the early days of her son’s life (15 years ago) when she was in survival mode and offers comfort and advice to those currently in that situation.

We discuss what exactly it is that we’re grieving, and how she has helped her son process his own grief.

Episode Transcript


Carrie M. Holt  0:00 

When I finally got to that point where I understood how the grieving cycle was always going to be part of the journey, I learned to give myself more grace.


Madeline Cheney  0:13 

Hi, you're listening to the Rare Life. I'm your host, Madeline Cheney. I am so stoked to give you episode 84, with medical mom Carrie M. Holt, all about grief. Carrie's a bit further along in her journey than some of us. Her disabled son, Toby. is 15 now. In this episode, she shares what grief was like for her in the beginning and the ways that she struggled to process that grief because she was in constant survival mode. We discuss what exactly we're grieving, how the various stages of grief, and especially anger, denial and depression, can show up over and over again. She also shares how her grief has evolved over the past 15 years, and how, in some ways, it's actually become more intense. We even talk about what it's been like for her to help her son deal with his own grief surrounding his disabilities, which I know will be applicable to some of us and not others, depending on the cognizance of our children. There are so many moments during this conversation where I just felt so seen and so understood while listening to Carrie share her experiences, and I really hope that that's the case for you, too. Now, I loved diving into this type of grief because I think it's pretty much universal among parents that have children with disabilities and medical complexities. I think it can feel like a taboo, or even be minimized by us or others. But it's a very real aspect of our lives and I think it's really important to talk about. For those who want conversations about the grief of child loss, which I understand is a different type of grief, with some overlap, there are two fantastic episodes I highly recommend. So, episode 20 with Katie is all about anticipatory grief, or the grief that you feel when you know your child has a shortened life expectancy. In episode 61, mom, Erica, shares the grief she felt after losing her son, Wesley, to medical complications. I'll put links in the show notes for both of those episodes, so check it out if you want to dive into grief related to child loss. Okay, so let me introduce you to Carrie and then we'll dive right in. Carrie and her family live in central Ohio. Her family consists of her husband, their three boys who are 18, 17, and 15, which is Toby, and their one girl, who is 12. Toby has spina bifida and hydrocephalus. She is a former teacher and now a full-time homeschool mom. She is a co-host of the podcast Take Heart Special Moms, and I'll put a link for that in the show notes as well if you want to check that out. Carrie is a lover of fiction books and playing games with her family. All right, let's dive in. Hi Carrie, welcome to the show.


Carrie M. Holt  3:58 

Thank you for having me.


Madeline Cheney  3:59 

I'm so happy to have you. It's so great to have moms that are a little further along in the journey to share their wisdom and experiences with those of us who are younger, and also for those in the audience that are closer to your stage of life that can have someone they can relate to, so thank you for coming on. I would love for you to start out by sharing just a bit about what grief was like for you at the beginning. I know it evolves over the years, but what was grief like for you when your son was first born and you first realized that he had stuff going on, medically.


Carrie M. Holt  4:40 

My grief started during prenatal diagnosis. It's not always that way though, everyone has different journeys. I felt like I was in this constant state of survival. For the first several months, my son was in the hospital from the time he was born until he was three months old. And, like, you just have to keep moving, you have to keep dealing with medical things back-to-back. My son took a road less traveled, he has a common diagnosis, but he ended up in respiratory failure with an NJ tube, which is a tube that goes in the small intestine to get food, and he was on CPAP. After that he would just crash. He just had all these medical things going on. He's our third of three kids and our boys were 3.5 and 2, our second son had a second birthday, while our other son was still in the ICU. It was just so overwhelming. Also, at the same time, I think there were times where I wasn't dealing with it because I couldn't. I think, sometimes, when you're in the middle of those medical situations, you just have this tendency, and rightfully so, this is what we do, we, like, put armor on, buck up, and put on our thinking caps in order to be able to make decisions and things like that. Then we brought him home from the hospital, and there we were with this medically fragile baby. He has a trach, he sets up to a ventilator 24 hours a day, seven days a week, and he's hooked up to a feeding pump 20 hours a day. We're dealing with all kinds of bags and things hanging off of him, I've got nurses in my home 16 hours a day, seven days a week, and I honestly expected that, once we got home, the grief was just going to be over with. I expected it to be in the hard situations, in the drives to the hospital at 2 a.m. because I get a call. I expected to feel all the feelings of grief and the grieving cycle, but then it was like, "Okay, we're home now so everything's going to be better and fine." And it wasn't.


Madeline Cheney  7:24 

Yeah, and I love how you phrased it. You had this armor on to protect you from really dealing with the grief because you're like, "I can't right now. I have all this stuff to do to help my son survive." I was thinking about my earliest days with my son as well, like, just adjusting to the idea that he had all this stuff going on, and I totally had armor on. I remember feeling this intense heaviness, and kind of dragging myself through all the different things, like therapy sessions, hospital visits, and a whole lot more. And I wonder if maybe a lot of that heaviness was that protective armor I put around myself of like, "I can't deal with this right now because we got another diagnosis." Looking back, I think I was depressed at that time. And honestly, I feel like that's sometimes how it manifests. Like, when I have an onslaught of grief, and even now, I get heavy, I feel tired, I don't feel motivated. Looking back, that sounds like depression. I wonder how often it manifests that way too.


Carrie M. Holt  8:33 

Yeah, I definitely think it does. So, my son was born just a few days after Christmas, and every year, through the middle of March, I have, what I call, situational depression. I don't have it constantly but I feel the same thing. I feel that heaviness and just, "Why am I not motivated to do anything today? Why do I not even really feel like getting out of bed this morning?" That is even something that I've been talking through with a mentor recently, and I'm getting ready to see a counselor about it because there are things from that time that I did not actually properly process and grieve because life just kept moving. Years later, you would think the farther away that you get from those anniversary dates of those situations, the easier it would get. And, in some ways it does, but in some ways it's actually gotten harder because I do feel that heaviness this time of year, and some of it is just that letdown after Christmas, but then I go, "Okay, what day is it? Oh yeah, this was the day he had surgery to get his trache." Or, "This was the day we had the snowstorm and I had been at the hospital for three days. I couldn't even get home and I was literally having a breakdown on the side of the road because I was a mile from my house and I couldn't even get there because there was so much snow and they were blocking the roads."


Madeline Cheney  10:19 

Yeah. It's interesting. I've noticed that with not just Kimball's stuff, but also other things, like my dad passing away and my miscarriages. I've realized that my body seems to know before I cognizantly realize that an important date is coming up, like, "Man, I feel like crap, why might that be? This is the date that I found out I was pregnant with that one that I miscarried later." It's just different things like that that I find really interesting. It's like we know before we really know, and we can have a lot of those responses before we really even process why we might feel that way, which I think is super interesting. I also want to touch on something you mentioned. As you get further away from the events, how it, in some ways, is getting harder. I'm wondering if that's part of what happened for me when my son had a cervical collar and we were gearing up for this big surgery, and it was so scary and dangerous. Then they were like, "Oh, actually, he's fine!" when we went in for the scan to schedule the surgery, and saying, "He doesn't even need the collar anymore." It was so interesting to me because I felt myself thrown into this huge bout of grief, and I was like, "What the heck?! This is such good news, I should be so excited." I even did a whole episode about this phenomenon, but I do think that, as you get further away, and you're more like, "Oh, I can breathe now," you really are able to process things that you were putting off when you were in survival mode. And then it's like, "Okay, we're okay now." And then I'm like, "Wow, I'm feeling the gravity of that situation." I also wonder if it could be like the same type of thing as getting further away in time, like you have, as he's gotten older.


Carrie M. Holt  12:05 

That's definitely the case. One of the things that I've noticed is, for the 60 surgeries Toby has gone through, some of them were two for one, seven for one. His last surgery was in September of 2021 and it was very minor. I can't remember exactly what was going on but he just had some little medical things happening. Sometimes I feel that stage of denial, and that's a part of the grieving cycle where you'll notice, "Oh, this is, he's got a little sore on his foot." Or, for him, he's in a wheelchair, "Oh, his legs don't look right in the way he's sitting in his wheelchair right now." I just, I don't want to pick up the phone and call the doctor because I know what it's going to entail. I know the repercussions. It's going to mean appointments, it's going to be tests, it's going to mean X-rays and maybe a wheelchair adjustment. Sometimes it's almost like, when you're constantly in survival mode, you get used to that. He had about 12 surgeries in a period of 15 months between the ages of, I think, six to eight, and I remember, we just got used to it. The feelings of adrenaline and survival and just dealing with this all the time. It was almost like I was able to put on that role of advocate, nurse, and all of this. But then, when I set aside that role, like, there was one day a couple months ago where I thought, "We're going to have to take him to the ER again." And I just, I thought, "I can't do this today." I looked at my husband and I said, "If he needs to go to the hospital, you're going to have to do it because I don't think I can physically handle this today." It is strange. It's a strange phenomenon, I know. Like you said, your body holds implicit memory. Your body knows. And then you get into this state of calm and some state of normalcy, whatever that looks like for your family, and then something comes up and I'm like, "No, I'm not gonna deal with that because, if I make that phone call, I know what it's gonna mean for our family."


Madeline Cheney  14:31 

Yeah, that makes so much sense. It's cool that we can do that, when you have the 12 surgeries, to be able to handle it, and maybe have some intense trauma later, but like, you can get through it. I do think it's almost like, there's parts of my heart that just get tired. It's like I've been wounded there so many times, and it's healed up but I'm like, "No, not again. That spot is so sore and sensitive and tender because of all the past trauma and hard experiences." I think that could be part of it too.


Carrie M. Holt  15:11 

Yeah, definitely.


Madeline Cheney  15:15 

So, with those difficult dates that come up where you're like, "Oh yeah, these are the months that we were inpatient for so long," different things like that, the different difficult anniversary dates. How do you handle that?


Carrie M. Holt  15:27 

So I am one of those people that, like, I'm a huge planner, very much a Type A personality. I'll just look at my calendar and go, "Yeah, well, we can do that and that and that." One of the things that I've learned is just to give myself space during that time, and a lot of grace. I think there is this level of guilt that we feel as moms, and we can't just handle it. I even feel guilty about the feeling of not wanting to do anything for the day. I mean, that's just so ridiculous because eventually I will get up off the couch and throw in a load of laundry or do some dishes or things like that. But because I did not accomplish 20 things in that day, I only maybe did two, and kept my children alive that day, I still didn't do anything. I think there's just this expectation on ourselves that we just have to handle everything and have this perfect balance, and we're never allowed to feel these negative feelings. So one of the things that I realized when our son was about five years old, was when I finally realized that the grieving cycle, anger, depression, anxiety, sadness, fear, and then coping, happiness, joy and moving through and processing, it's not always the negative feelings of the grieving cycle. What I finally realized is that this is always going to be a part of the journey, there is always going to be feelings of loss because we have to accept that we have lost, we experience loss. When I finally got to that point where I understood that the grieving cycle was always going to be part of the journey, I learned to give myself more grace. One thing i've realized is, with anger or fear, they come out in little things, they don't come out in big ways. When we're in the ambulance again and riding to the hospital, it doesn't come out then, it comes out in the drive thru when they get my order wrong. It brings up all this anger. Or, my kids are just frustrating me or something, and then I'm just crying, and I'm thinking, "Where is this coming from? This situation does not warrant these huge emotions that I'm feeling. Oh, yeah. It's grief." So I think that was number one, giving yourself a lot of grace and not feeling guilty. Number two is just being aware of your body, being aware of how your body even holds that trauma in your shoulders, your tenseness and things like that, and then doing the things that you need to do to take care of yourself that day. Along the way, along 15 years, I've learned just different things that helped me deal with grief that day, or the strong emotions that I'm feeling again. It's not always sadness and grief. It's other things too.


Madeline Cheney  19:02 

Yeah, I've definitely had moments like that where, all of a sudden, I just can't make dinner or kind of freak out about something that seems totally unrelated and might be totally unrelated. And then I have the feelings of like, "What's wrong with me? Why can't I pull it together?" So I love that you identified that, "Oh, when I'm freaking out in the drive thru, it isn't actually the drive thru. That's my grief about what's happened, and the weight and stress of difficult dates." I really love that mindset, and I feel like we need to also kind of dissect, what are we grieving? We keep talking about grief and I'm sure everyone listening is like, "Oh, yeah, grief, I feel that too." But like, let's dive into what it is that we are grieving.


Carrie M. Holt  19:49 

So, the biggest thing that we're grieving is just the loss of expectation. One of the podcasts that I listened to about trauma talks about how any time that your day doesn't go like you expect, you experience trauma, it might not be 'trauma with a big T' but it could be 'trauma with a little T'. You can usually deal with that and move on your way but when you've also accumulated all of this wounding, like you were talking about, I love how you said that too, just the wounding of our hearts, that we have to then stop and think, "What am I grieving?" So, in the instance when my son was five, he had this really unexpected hospital stay, and we were in the hospital for five days. Then, all of a sudden, I had to bring in all this outside help. It was the end of the school year, my kids were at school at the time, and it was the end of the year parties and field day. My little daughter was like two years old at the time, and I had to bring in my sister and brother-in-law. And then, at the same time, we were planning to travel for my sister's bridal shower. So I'm planning 10,000 things. And a couple weeks later, I just crashed. It was a librarian that I went off at in the library. What I realized was that I was grieving a couple things. One, that I couldn't be there for my kids, my other kids. I had missed some things, and I had to ask for help from other people in order to cover all the bases. I couldn't be there for all my other kids. And there is so much power in naming what we're feeling and naming what is causing it. I am so glad you asked that question because it's been a huge thing. I write in journal a lot, which helps me deal with that and figure everything out. And sometimes we have to look back three months, even six months and see what it is. And, I will say this too, I think it's really important to pay attention to, maybe it's a milestone that your other children reached at a certain time, or you're watching your friend's children reach. One time, when my son was about 12 in our homeschool group, once you turn 12, it's this big deal to move into the junior high years, and there's this whole ceremony and just really cool stuff going on. I remember I was standing there, watching all the kids in his class go through this process, and my son was not. We had chosen to wait another year because he just wasn't ready for it, and I left the building in tears. I was sobbing, just sobbing. It was just really difficult, I’m getting teary just talking about it. Naming what I was grieving in that moment was that he couldn't keep up with his peers, and how many more times through the years would we have friends come in, and they would be a part of our journey, and then they would move on? So yeah, that's been one of those things that I've just had to really be aware of. Coming soon for us is everybody getting their driving permits and I know that's going to be something that's difficult for me, but also for Toby because our son is cognizant enough to see all of his peers moving on to these milestones and he won't be.


Madeline Cheney  23:53 

Yeah. I was standing in the beach one time and we were on the coast and there were big waves, and I was thinking about how we talked about waves of grief. I was in the part where it's all, you know, turbulent right after it crested, and I was like, "Man, it is so much easier to stand my ground when I'm looking at the big waves as they're coming so I can brace myself." And I was picturing, if I had turned around so I didn't see them coming, you're likely going to be knocked down, or at least caught off guard. And so I do think that when we can predict, like, "Oh, here it comes, everyone's getting their permit so this will probably be difficult for me." Those are probably easier waves of grief to process and get through. But the ones that catch you off guard are really difficult. Like, "Whoa, I did not see that coming. I did not realize I would have this huge amount of grief when my son got cleared with a cervical collar." Things like that seem less logical, or like, "Wow, that was three months ago. Why am I grieving that now?" So I think maybe giving ourselves grace for when we do get tousled over for unexpected waves, and doing our best to face the horizon back and be like, "Hey, what waves are coming, what might trigger this grief, and I can prepare for that in my schedule or just mentally," I think, can really help.


Carrie M. Holt  25:28 

Yeah, for sure.


Madeline Cheney  25:29 

So, I would love to hear how you've helped him process his grief, I think that is so interesting. Many of us will be facing that either now, or in the future of helping our own kids watch their peers do things that they can't, or realize all they've been through that their peers haven't. Just different things like that, how have you helped him?


Carrie M. Holt  25:53 

 So I will say that it is a whole different ball game to walk through it with your child. I tend to be a little bit of a fixer by nature. I'm not always a very good listener, so that's one of the big things that I've had to learn, is just to listen to him, process it verbally and ask the questions. And actually, right before we got on to record today, he was just in tears and having these big emotions, and in my mind, I thought it was because he said to me, “Mom, I've got some questions for you and I need to talk to you about this later.” And in my mind, I'm thinking, “Oh, I just don't want to go there right now. I don't know if I have the space for this today.” And even then, I have to remind myself that I need to be a safe place and a safe space for him to have the big emotions, to have the anger and the frustration, and to also understand that, just like little things will set me off, sometimes little things are gonna set him off too. He's not going to have the language for it, so also giving him the words and the language for it, we started seeing a counselor, before the pandemic, and then, since things have calmed down, we started seeing her again, and he wasn't having these major behavioral problems or suicidal thoughts or anything like that, but it was just me being a little bit more proactive about, “I need someone that's going to help me give him the tools to deal with this and give me the language to use with him when he is dealing with these feelings of grief and sadness.” And watching his older brothers play sports when he can't do that, that's been a huge one for him. So being a good listener, I think, is just the number one thing, and it's hard, especially when we're carrying our own pain. And I think number two, being willing to find outside help. Also, for me, it's like our faith in praying for wisdom because there are times when I just have to think in the middle of a situation, “Okay, he's going down this path where he feels really badly about himself. So how do I pull him back? From the brink of that? How do I help give him a little bit of perspective?” And there are times when it's really important that I don't have any words to say, that I just let him process, but then there are times where I need to speak some truth into his situation. You know, “Let's look at the things that we have to be grateful for. Let's look at the opportunities that you do have.” We're in the situation that we're in and it's really hard because sometimes I just want to go in and go, “Nope, let's just move on today. We don't have time for this.” And then other times, we have to allow time for that. And it just takes a lot of time, space, all of that, and a lot of wisdom. So yeah, that's just some of the ways that we're working through right now. And again, I don't have it mastered. I'm learning on a daily basis.


Madeline Cheney  29:32 

Sounds so hard. It hurts just picturing those conversations and watching them grapple with these things and hurt in that way. I think that sounds extremely triggering too, for your own grief, to be like, "Oh my gosh, I want to take this away and make it easier for him." I'm sure it's just so messy and tangled up with each other because you're grieving really similar things. And I mean, that sounds really difficult. I guess you probably put your armor on like you did before, just finding a way to delay my problems and help him first. But that sounds like an extra type of just pain. Sounds really hard.


Carrie M. Holt  30:19 

Yeah. I know one of the things that I have thought about through the years, and I've done this in little bits and pieces is, there are a lot of things that he just doesn't remember. He had a massive seizure when he was five years old and it lasted four to six hours. By the time we were done, he was in rehab, and he couldn't hold his head up. He couldn't eat food by mouth. I've realized this actually, even for my other children, too, they don't remember any of these things. So it's also revisiting pictures, revisiting videos, and reminding him, like, “Look at what you've overcome, look at how far you've come.” Even just pictures of him as a baby, and just different things. And again, I know that not every child is cognizant of this but I think sometimes one of the ways that I've just helped him deal with the grief is to look back and go, and he even says this to himself. There's the self-talk that he’ll do when we go in for another surgery, he'll say, “I've had 50 surgeries, I can do this again. I've faced this really hard thing, I can do this again.” And so I think sometimes it is walking them through some of those memories because I know his body has the implicit memory but his brain doesn't necessarily have the explicit memory. And so, again, every kid is different in how they can handle that but it's us having those conversations too.


Madeline Cheney  32:00 

Yeah, totally. I think that's so sweet to picture him soldiering through. And, as you were saying that, I was like, “Man, that also reminds me of how we handle it, like, “Oh, we're going in for another surgery. I've helped him through 50 surgeries, I can do it again.” I think that's really empowering. I think it’s another type of grief that we can feel, especially just all of this all combined in watching your child and helping them through their own grief and everything, is grieving the fact that you've been through so much. It's kind of like a bundle, I feel like it encompasses everything, but just kind of that heaviness of like, “Man, I've been through so much, he's been through so much, his siblings have been through so much, my partner has been absorbing the heaviness of realizing all the things that you, as a family, have been through.” You watch your peers, and, of course, they have things going on that you don't see, but like, “They didn't have to go through that.” I think that right there is another type of grief where it just kind of encompasses all the pain, all the struggle, and just all of it.


Carrie M. Holt  33:15 

Yeah, for sure.


Madeline Cheney  33:18 

So I would love to wrap up with a pep talk for younger moms. So if you just picture like, especially in survival mode, where you just found the diagnosis and you're inpatient or you haven't really had time to slow down and process through the grief. What would you like to say to them?


Carrie M. Holt  33:42 

I would just tell you that, and I know this is gonna sound ridiculous, but I think once I learned to embrace the fact that I was going to grieve, it almost became a friend. I know that sounds really weird but what I've learned to do is that, when the grief comes, I think it's important not to stuff it down and then try to just be like, “No, I don't want to deal with that today.” Certainly there are times we have to do that, when you're having to make quick decisions, we have to do that. But when it comes up, like, I might be in the car by myself and a song might come on or something like that, I've just learned to let the tears flow, to let the emotions come and to just find a way to process that and just be really kind to yourself because it is going to come. That's the reality. Accepting and knowing and understanding, even just researching the parts of the grieving cycle and what that looks like and things like that, and being able to name, “Oh, you know what, I'm in denial today because of this or I'm feeling angry today because of that.” It's just so empowering to be able to name where you're at. Then to have the tools to process the grief that's going on. So I would just say, really pay attention to your body, pay attention to what helps you to thrive. Someone once said to me that self-care is less about making decisions in the moment that make you feel better, but more about making choices that are going to help you feel better in the long run. I think that's really important, too. I would also say to you that grief is just part of a journey, just like anything else, my grief does not look the same as it did in the beginning. It's not always overwhelming and all-encompassing and defined. Eventually find something that helps you process, that can give you purpose in your grief. Locally, at our children's hospital, they try to include parents in a lot of volunteer roles. And one of the things that I got involved in really early in Toby's journey, I think he was about 15 to 18 months old, when I started doing something called Family is Faculty. Basically what it was was us sharing a little bit about our stories and experiences at our hospital to new employee orientation. It was a way that they brought in families to give perspective and talk about family-centered care. That just means that you're considering what the family is going through when you're caring for children. I just actually finished up, 13 years I did that. And there's something to being able to tell your story to someone. In a way, you have to process it yourself. You don’t need a platform or volunteering, but as you process it and as you tell your story more, there is so much healing with that. And I will tell you, being able to feel like I had purpose and I was able to help other families that were going through similar things that I was going through, and I know that looks different for different families, but it was really, really healing for me. And you only know yourself, right? I will say to you, you might not be able to do that until your child is older, whatever. For me, it was when he was the age that he was, and so it just looks different for everybody but I did find so much purpose. And again, I think there's so much to storytelling, especially because you have to process part of it to be able to tell your story to other people.


Madeline Cheney  37:43 

Yeah, I think you and I are huge advocates for the podcast platform of that kind of storytelling, like, it is so healing to be able to talk it out or to listen to someone else who's sharing their story, where you can hear your own story. I think that is also a really powerful way to process. And journaling or using social media or all these different avenues, I do think can be a huge part of, not closure because obviously it's still going on, but kind of like that acceptance part of grief, like, “Yes, I accept that. This is my life.” And I think it really does add an extra layer of beauty to it, when you can see your story for what it is because it really is heartbreaking. It's difficult, and it's full of love, and it's beautiful too. It's all these different things. I think storytelling can help you see the whole picture that way, too. Well, thank you so much Carrie, I am so excited about our conversation. I think so many of us will benefit from this and I just really appreciate you.


Carrie M. Holt  38:54 

Thank you for having me, it's been wonderful.


Madeline Cheney  38:57 

You can find adorable photos of Carrie and Toby on the website, The Rare Life Podcast.com. You can find a link in the show notes for that for, both her and my Instagram accounts if you want to follow us there, and for both the episodes mentioned in the intro about grief of child loss. There is also a link to the episode I mentioned in our conversation about the unexpected grief that I felt when we received incredible news about Kimball's health. I also want to put a plug-in for therapy. Carrie and I have both benefited from seeing a therapist to help us work through our grief and it's been incredibly helpful. If getting to traditional in-person therapy is not an option for you, I encourage you to check out our sponsor, Better Help. They offer online licensed therapy and they even have a financial aid program for those whose budgets do not allow for the monthly subscription fees. If you use the link in the show notes, a portion does go towards supporting the podcast and there is a discount built in. So check that out if that sounds like the right next step for you. Okay, one last plug, I promise. Since we discussed the power of sharing your story, this seems like a great time to announce our new application system for those interested in being a guest on the show. Some of you following me on Instagram probably already know, so if you think that sharing your story and experiences on this platform could be healing and meaningful for you, please follow the link in the show notes to apply. We sadly cannot have on every interested person but this is a great way to be considered. Also, if you know any professionals that would make a great guest, please send them the link and encourage them to apply. We love our professional episodes too. Join us next week for a conversation with three participants. Myself, Amanda Griffith Atkins, who is a medical mama and licensed therapist, who I'm sure you remember from Episode 81 about health anxiety, and, drumroll please, Emily LaDau. As many of you know, Emily is the disabled author who wrote the fantastic book, Demystifying Disability. We are going to discuss controversial things like the emotional and ethical aspects of having our identities wrapped up in our disabled children, and the verbiage around phrases like 'Medical Mama', 'Special Needs mom', etcetera. This conversation is so important and you do not want to miss it. See you then.

Add new comment

Plain text

  • No HTML tags allowed.
  • Lines and paragraphs break automatically.
  • Web page addresses and email addresses turn into links automatically.
The content of this field is kept private and will not be shown publicly.
Living with Sleep Deprivation w/ Jill Arneson (Rebroadcast) https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-5-1/332732190-22050-1-40fed6f439bf6.m4a


Hex Code

68: Dipping My Toes into Educational Advocacy