Ep. 87: Depression, Anxiety, + PTSD in Medically-Complex Parenting w/ Karley Henderson

Episode Transcript

Karley Henderson  0:00 

There's a lot of, just survival. I feel like I'm doing what I have to do, even if some days it is the bare minimum.

 

Madeline Cheney  0:14 

Hey, you're listening to the Rare Life. I'm your host, Madeline Cheney. Today we have Karley Henderson's special topic episode, all about her mental health that was affected by trauma with her medically complex daughter, Nora. Karley did share her story in the previous episode, number 86, so be sure to check that one out if you haven't yet. This episode is so needed. When I was dreaming this one up, I invited listeners interested in sharing their mental health journey to apply to be a guest, and the number of applications I received kind of broke my heart but it also gave me that much more resolve to get this episode out there because it is clearly needed. And something that so many of us silently suffer through. Karley has struggled with anxiety ever since she was a kid but with her daughter's birth and all the ensuing trauma that came along with that, came depression, panic attacks, night terrors, and PTSD. However, as we all know, life keeps marching on, her daughters still require visits to the hospital, and that is home to her most intense triggers. In this episode, Karley shares how she copes with this and watching her six-year-old daughter Addie and struggle with anxiety over Nora. She also shares how difficult albeit helpful therapy is for her, in part because it's still occurring. The traumatic experiences are still coming. Karley also opens up about how difficult it was to accept her recent diagnosis of PTSD because, isn't it her daughter's trauma? There are so many moments in this conversation that I know so many of you will resonate with. So, without further ado, let's dive in. Hi Karley, welcome back to the show.

 

Karley Henderson  2:38 

Thanks again for having me!

 

Madeline Cheney  2:41 

I would love to start out by hearing a bit about what your mental health was like before Nora was born, as well as the ensuing trauma and stuff that happened.

 

Karley Henderson  2:55 

I have always struggled with anxiety. I did have a lot of childhood trauma, but back then it was not discussed. I was always 'the shy kid' or 'the what-ifs kid' but looking back, it was 100 percent anxiety. I did feel like it was always manageable. I would get social anxiety, I would get anxious going places, I would think about all the what-ifs and the worries, but I always had a hold on it.

 

Madeline Cheney  3:31 

Interesting. So you were kind of predisposed to that anxiety beforehand. Tell us about how that evolved after Nora. I know we heard a bit about some of the trauma in the first episode but maybe you could talk about what specific events really threw you into that.

 

Karley Henderson  3:59 

So I do feel like, after Addie was born, it got a little bit worse, she has a few medical issues going on. It was mainly just a little bit of anxiety around being worried about her and about germs because she was diagnosed with asthma at eight months old, so respiratory viruses were always a danger for her. Then, after my pregnancy with Nora, it really took off. Nora spent most of her first year in the hospital, and my mental health got so bad that it turned into depression. At that point, I started having panic attacks every time I went to the hospital, which is really hard when I'm at the hospital every single week. Certain triggers would send me into panic attacks, whether it was the smell of the soap at the hospital, or the smell of the handsanitizer, the parking garage, the sounds of the machines. I began having night terrors, and it was the same reoccurring night terror every single night, so that really became an issue. Ironically, it was not until after Nora's first year, that I finally realized how bad it had gotten. I think it's because I was in fight or flight mode for that entire year. Being at the hospital, Nora had four brain surgeries her first year, and going through that, going through the doctors not knowing what was going to happen, going through Nora having her seizures and holding her down for the doctors. There's just so much that played into it. It got to the point that I realized how often the panic attacks were happening, that I couldn't sleep. It got to the point that I was scared to sleep because I was scared of having that night terror. That is when I realized that I did need help and I needed to do something about it.

 

Madeline Cheney  6:09 

Yeah, that is so much to be dealing with on top of everything on a day-to-day basis with your children, like going to the appointments, going to the hospital, and just keeping your kids healthy and safe, and then to be dealing with your own demons popping up. Yes, they were caused by the everyday life things you were going through, but to be handling both of those at the same time.

 

Karley Henderson  6:40  

Yes, it was very challenging. Actually, after I started going to therapy, I was diagnosed with PTSD as well. Honestly, that made me feel a little uncomfortable. I felt like it was Nora's trauma, I didn't feel like it was my trauma at all, but it wasn't until I started talking about everything that I went through at the hospital with Nora, that I realized how traumatizing it really was, not only for Nora but for myself as well, we kind of share that trauma.

 

Madeline Cheney  7:15 

Yes, that is such a good way to put it. It's an interesting relationship, where it's like, "Yes, I'm not the one going through this stuff firsthand, but I'm still absolutely going through it with my child." Especially when your child is a baby, they really still feel like an extension of you. I think that's probably an evolutionary thing that's intentional so you can take care of your baby and everything. So watching your child go through these really terrible and traumatic things, it really does feel like it's happening to you. I hate to say this because it's a little bit audacious, but I think in some ways, it's just very different. It's very different to be experiencing the trauma firsthand as the patient versus being the parent. Sometimes I wonder, which is worse? Is it worse to be the one going through it firsthand or is it worse to be the parent watching your child suffer so much and go through this really hard stuff?

 

Karley Henderson  8:27 

Yes. I feel like, no matter how old your child, it's hard, but especially, I don't want to say it's harder, but when they're an infant, they can't communicate with you, and you're seeing them laying there having incisions, IVs, or chest tubes, and they can't talk to you about it. They can't tell you what they want, how they want it, or how they're feeling. It goes back to those what-ifs. 'What if you're doing the right thing?' 'What if you're not doing the right thing?' I feel like that sends you into more issues and more anxieties because you don't know.

 

Madeline Cheney  9:11 

Yeah, and so much of the stuff that you're doing to save their life or keep them alive, it feels like it's at their expense at the same time. I feel like I'm doing these terrible things to you by putting you into surgery or whatever it is to save you. I feel like there's that responsibility of like, "What am I doing?" Even something like Kimball's G-tube surgery, and that's not a huge surgery, but it still was like, "What have I done?! I just made a hole in his stomach! Was this really the right thing? Was I overreacting?? Should I have just bucked up and kept the OG tube?" I feel like there's a lot of questioning that way too, like, "Am I doing this to them? Am I messing them up?"

 

Karley Henderson  9:58 

I agree. It is hard.

 

Madeline Cheney  10:01 

So the PTSD, when you received that diagnosis, and you said initially you felt guilty, like that's not your right to that trauma, what did that look like, working through that? Did you come to acceptance? What was that like?

 

Karley Henderson  10:20 

I had such a hard time with it and it was hard for me to say out loud because I felt guilty and I felt a little bit embarrassed, like I was trying to take away from Nora, which I wasn't, obviously, but I did not want her trauma to be last because I also had that trauma. It took me a while to realize that we can share that trauma in different ways, and I'm still working on it a lot, i've been in therapy for about seven months now, and I still have a very long way to go but it helped me realize that I do have severe mental health issues and that I do need to take care of it or I will end up drowning. I can't take care of her or Addie if I don't. I think I've begun to accept that I do have anxiety, I have depression, and I have PTSD.

 

Madeline Cheney  11:22 

I guess I'm curious too, do you find it difficult to say that out loud? Like just now when you listed that off, is that hard?

 

Karley Henderson  11:30 

I think, that's why I listed it, because I still feel strange doing it. I feel like that PTSD still has a little bit of a stigma attached to it. And it is hard because I still go back to, "I'm not the one who had my head cut open four times. That's her." But then I realize that if I heard somebody else saying that, like, "Oh my gosh, that's terrible that you went through that with your infant." I kind of have to look at it like that, like what I would say to a friend or somebody reached out to me versus to myself. I feel like we're always a little bit harsher on ourselves.

 

Madeline Cheney  12:10 

Yes, that self compassion is really hard but I do agree. I also think that that translates over to listening to podcast episodes. When you can hear someone else talking about it, you can be like, it shows you a more compassionate view. Seeing someone else struggle with something and talk about it, you can be like, "Oh, yeah, I struggle with that too, and that does make sense, that I struggled with that." So, hopefully there are people listening right now, too that are like, "Yeah, I also have a lot of the same struggles. Listening to Karey talk about it, like, yeah, of course Karley has that stuff. That's been really hard." I just feel like it is easier.

 

Karley Henderson  13:01 

I completely agree. Actually I'm doing parts and memory therapy, and a part of that is going back to yourself in that position and talking to them about how they feel and what they're going through. I do feel like you have to look at it in that way or you're not going to accept it. You're not going to talk to yourself the same way.

 

Madeline Cheney  13:24 

Yeah. I feel like there is a lot of shame in struggling. How I picture it, because I've been working through my own stuff too, this year, I realized I was shaming myself for struggling, and it was very poignant. It was after this therapy session, and I realized that I had been literally kicking myself while I was down on the ground. I pictured myself curled up in a dark, dank room or some sketchy basement, curled up in a ball, just so hurt, and then kicking myself. "Get up. Get up. Get up. Why are you down there? You're so weak." It really broke my heart. That was kind of hard to process, to be like, "Oh my gosh, what have I been doing to myself?" I think it is really easy to get to that point, to shame ourselves when we're struggling, which is essentially like kicking yourself while you're down, it's not going to help at all.

 

Karley Henderson  14:34 

I agree. I feel like parents of medically complex children are held on this strong pedestal. I can't tell you how many times I've heard, "Oh, you're so strong. I don't know how you do it." When in reality, I want to curl up in a ball. I'm tired. I'm anxious. I don't feel strong at all. I know I'm strong, but I'm also tired and anxious and depressed, and that's okay. I feel like we try to be strong for our children, for ourselves, for the doctors, but we have to take care of ourselves and we have to realize that it's okay to not be okay because who would be okay in these situations?

 

Madeline Cheney  15:21 

Yes. Like validating what you're going through.

 

Karley Henderson  15:27 

It's hard but it's worth it.

 

Madeline Cheney  15:30 

Yeah. So let's talk a little bit about depression. I know that that can either be clinical and diagnosed or it can be feeling depressed or having acute depression, like feeling depressed. I would just love to hear, what has that been like? Dealing with the different symptoms that come along with depression, and still keeping up with everything that you have to do as a parent?

 

Karley Henderson  16:01 

It is very difficult. I don't want to say anxiety is my thing but anxiety is kind of my thing. I've always dealt with a lot of anxiety, as I mentioned, ever since I was a kid. However, depression is newer to me. It is very difficult, especially when you're the one in charge of the appointments. You're the one in charge of the children, and you have to just basically make yourself do it. Some days, it's a movie-and-pizza kind of day. It's a movie-and-macaroni-and-cheese. We've watched Encanto probably 15 times in one day. There's a lot of, just survival. I feel like I'm doing what I have to do, even if some days it is the bare minimum.

 

Madeline Cheney  16:55 

Yeah. That makes so much sense. I think that we do need to give ourselves license to do that, to survive that day and to not hold yourself to these really high standards. Like, "You know what, we're just going to survive today and call it good. Be proud."

 

Karley Henderson  17:17 

Yes, I just moved one of Nora's therapies down from twice a week to once a week because that one day a week to just not do anything, just to enjoy laying around, enjoy the toys, whatever we want. Not only did Nora need that, but I needed that as well.

 

Madeline Cheney  17:39 

Yeah, totally. That makes so much sense. Has there been anything that you have found that has alleviated some of the symptoms of your depression, PTSD, night terrors, or panic attacks? Have you found things that have helped, at all?

 

Karley Henderson  18:03 

It's been hard since I am currently living through this. I feel like, sometimes when we hit on those past events, it's not easy. I don't want to say it's easy, but it's a little more difficult when you're still facing these triggers on a daily basis. So I have really struggled with that. I'm kind of running away from it a little bit, like, I bring my own little pump of sanitizer in the stroller so I don't have to use any of theirs, which is not great coping skills. It is avoiding, I guess, my triggers right now until I can work on healing a little bit more of the trauma that I do have. Like I said, I'm doing the parts and memory therapy, so going back, we started at Nora's birth. I do feel better about those certain situations, we've kind of neutralized those emotions. However, Nora has had a lot of stuff so there's still a very long ways to go. I've not, I think just kind of chopping on it has helped me in some ways. However, there's still a lot that needs to be chopped away. As of now, I do a lot of deep breaths. I box up my emotions and either throw them away, metaphorically, or I wash them away. There's a few techniques, but I find it very difficult when it's a daily basis. In-patient is harder on me than out-patient, but it's still the same hospital. I think I'm able to avoid it a little better, which is not healthy but it is helping me chip away at those core memories while I still have to function. We still have to go to the doctor every week.

 

Madeline Cheney  19:57 

Yeah, while you're talking, it reminded me of being in the warzone and needing to go to the hospital for the wounds that you've had, but you have to stay in the line of fire. You can't just go hide away, ironically, in a hospital, but like, that wouldn't be where you'd be heading anyway, but to still be in that line of fire, like, how do you heal? If the wounds are still coming and you're still in danger, that is tough. It's tough to really cope with that stuff or process it if you're still having it, if it's still happening.

 

Karley Henderson  20:34 

And that's honestly, like I said, I have some childhood trauma as well, but we are focusing on this medical trauma because it is stuff that I have to face every single day. So it's just chipping off, little by little, in hopes that we can beat it before it catches back up again because there's traumatizing things happening still. It's trying to beat the race, I feel like, getting it down just enough, just so I can pile more trauma back on.

 

Madeline Cheney  21:03 

Yeah. That's such a tough situation. How do you feel about yourself? How do you feel about yourself in this struggle? What is your view of yourself?

 

Karley Henderson  21:21 

It comes back to those mixed emotions. There's a part of me that feels proud of me because every time my therapy appointment comes around, honestly, I don't want to go. It's hard. I don't want to go, I don't want to deal with it. I would rather just sit back and enjoy my day. I still go. I still go and I still do it. I'm trying to do it. Then there's a part of me that is sad because there is some things that I don't remember because it was that traumatizing, that I just blocked it out. There's parts of me that are sad because I feel like my kids don't get the full me because I'm either anxious, depressed, or going through a panic attack. So I feel like I'm not entirely the mom that I want to be to them because I'm not here, essentially. My mind is other places, or I'm tired because I can't sleep. There's a lot of mixed emotions about myself with it.

 

Madeline Cheney  22:32 

Yeah. That all makes so much sense. Actually, it really resonates too. I felt a lot of those things. I guess it's sensitivity to be like, "I felt that too," if I'm not dealing with the same level as you, but like, there is this sadness that I've experienced too because I've had episodes of feeling depressed, not necessarily clinical depression, but like, "I don't have the energy to get off the couch, I'm just gonna sit here." And just feeling in that haze and kind of watching the kids and being like, "What kind of mom am I right now? I want to be like, 'let's go to the library and let's go on a walk!' I want to be that version of myself." But instead, "I'm just not here right now." It's really hard.

 

Karley Henderson  23:16 

It's very hard. You have those feelings that you want to do it but then you just can't do it. I've realized, even after my therapy sessions, I can't do anything the rest of the day. I am angry, I'm irritable, I'm exhausted, just going through it all again and going through those memories. It's hard because it's part of the process, but you're still missing out, you're missing that entire day.

 

Madeline Cheney  23:48 

Yeah. I felt so silly about my therapy appointments too. It's like the whole day is trashed because before the appointment, I'm like, "Oh no! I have therapy today and I don't want to do it." And then the rest of the day is like, you open those wounds up and it is really hard to package them up neatly and jump back into life. It's such a sacrifice to do therapy.

 

Karley Henderson  24:20 

It is. That's me too. I usually walk around the house beforehand. "I don't want to go. I'm just gonna cancel. I'm not gonna do it." And then, there I am getting in the car and going. Then I'm getting home and I'm irritable, and all I want to do is curl up in bed. It's hard because you know you're supposed to be doing it, you know it's gonna help, but in that moment, in that day, it's not helping. it's hard.

 

Madeline Cheney  24:48 

Yeah, it's definitely an investment. It's like, I know this will help me in the long run but it'd be easier to just not go, to not do it today.

 

Karley Henderson  24:56 

Exactly. And then you're drowning. Then you're in a bad place before you realize it. It is definitely worth it. It's just very hard to do and to commit to it.

 

Madeline Cheney  25:11 

I think it is really cool that you recognize how hard it is for you and what a sacrifice it is, and then to feel that pride to be like, "Yes! I'm doing it even though I really don't want to."

 

Karley Henderson  25:22 

Yes. I've even told my therapist that, I'm like, "No offense but I really don't want to be here, but I am so.."

 

Madeline Cheney  25:33 

I'm sure they hear that all the time too. Like, "Yeah, everyone hates me."

 

Karley Henderson  25:39 

"And then they're thankful in about a year or so."

 

Madeline Cheney  25:41 

Yeah, exactly. So I would love to segue into Addie's panic attacks. She's only six years old and you've already been witnessing this, do you mind sharing a little bit about that situation?

 

Karley Henderson  26:03 

So Addie has always had anxiety, like her mother. And she also has sensory integration disorder, or SPD, so it's always been a struggle and I stayed home with her. Then once Nora came along, we spent almost an entire year in the hospital, so I was not with her. However, Addie would come and see her. Addie saw incisions on her head and a solid chest tube hanging out of her, which, I feel like, is good because she missed her, she missed me. We were lucky enough to be able to do that, but it got to the point of her asking, "What's wrong with her? Is she going to die? When do you get to come home?" It turned into a lot of crying and a lot of what-if's, which reminded me of me. Then once COVID came, Addie is very particular and she knows how important the masks are and, like any other kid, she listens to everybody, so she knew a little bit about what was going on. Nora cannot wear a mask for her medical reasons and anytime we would leave the house, Addie would begin to have a panic attack. She would go into, "Nora is going to get sick, Nora can't get sick, Nora is going to die." She was so concerned about her not being able to and she knew, essentially, that the masks protect us. She was scared for Nora's life. She would hyperventilate, it would take us 30 minutes to get into a car. It became very severe. And another example, Nora had her endoscopy a couple of weeks ago, and I was tucking Addie it into bed, and Addie started crying, and she couldn't breathe. She was hyperventilating, and she was scared. She told me that, how did she say it? She said, "I don't want you to go to the hospital with Nora because I'm scared you're going to get stuck there and have to stay there like before." It is very hard because she is only six and to witness how much anxiety everything has caused her, whether it's the pandemic or Nora's health, and she feels very strongly, no matter what it is, she has a lot of feelings, and she consents that and it scares her and it does send her into panic attacks. Which, I mean, six years old, that's a lot, that's a lot to hold on to.

 

Madeline Cheney  28:56 

That's heartbreaking, picturing that happening and her being so concerned about Nora. And that trauma, I don't know if you guys feel like it's trauma but I'm guessing trauma, you guys being at the hospital so often and then worrying if Nora will be okay, kids go through so much. One thing I've wondered too is like, when I'm struggling more, Wendy, who is also my older daughter, she struggles more too and it's this terrible and vicious cycle because then we are going back and forth and making each other worse. I wonder too, like, how much us also struggling is contagious to them and how they pick up on that.

 

Karley Henderson  29:49 

I do think they do, and then it's hard because you don't want to hide your emotions or lie to her, just like with the other day, I told her, "The plan is we are going to stay one night, and then we will come home," because we don't know and I don't like hiding things from her because honestly, she'll find out, even if I did. But, like you said, they feed off of us. So, what do you do? And I do agree that it is trauma. They've gone through the same things we've gone through. I stayed home with Addie for three years, then all of a sudden, I was gone for almost an entire year, just from being in the hospital so much. And then, when Nora was born, she didn't understand why we didn't see her eyes. And she knew that she was in pain, and then physically seen everything that Nora went through, whether in the hospital or at home with the bandages, the scars, the incisions, she has become very protective over her. She did not let anybody touch her head. Nora fell the other day and Addie dove off the couch and tried to keep her from hitting her head. She's very protective over her but I do feel like all of this medical trauma has affected her as well.

 

Madeline Cheney  31:08 

What a sweetheart. Just hearing about how much she loves and wants to protect Nora, that is heartbreakingly sweet.

 

Karley Henderson  31:26 

Yes, they fight a lot but they also have a lot of love for each other. Especially as Nora gets older, they fight a lot more.

 

Madeline Cheney  31:34 

Oh, yeah. That's like a rite of passage, right?

 

Karley Henderson  31:37 

Oh, yeah.

 

Madeline Cheney  31:40 

I mean, they totally do, they totally go along with us, with that trauma. How has that been for you? How do you feel when you are there and you're seeing her go into a panic attack or become anxious and you see yourself in her? How does that feel for you?

 

Karley Henderson  32:02 

Honestly, it breaks my heart. It makes me feel very guilty because I know that it is coming from me and genetically. It makes me very sad that she's going through all of it. She has had her own health struggles. And she also has Loeys-Dietz syndrome and I do too, which is another reason I feel guilty because I gave it to both of them. Knowing that she has that.. she's six. I feel like she should not have any worries. She should be climbing a tree and playing with her friends. Instead she's having a panic attack because her sister can't wear a mask. It makes me very sad. It scares me because I don't want her to lose out on anything because of her anxiety. It's hard. It's scary and it's sad.

 

Madeline Cheney  32:59 

Yeah. That must be so sad and so scary. And I get the guilt thing. I totally get that where you're like, "Oh, that came from my genetics and I would have never given that to you on purpose but I still feel so guilty."

 

Karley Henderson  33:17 

it's inevitable, I feel like, to have just a little bit of the guilt at least, knowing that it just happened which, a little off topic, but Addie and I did not get diagnosed with Loeys-Dietz syndrome until Nora did. Nora is actually the reason we got diagnosed with that. Nora got all of us diagnosed and then I did find out it came from me.

 

Madeline Cheney  33:41 

Like, "Oh, sorry, guys." Oh yeah, that's the worst feeling. Well, I would love to close with, I just noticed that you said for the year you wanted your focus for it to be peace. So I would just love to close with, how you might envision that happening for this year. What little ways that you might incorporate that focus or that vision of peace?

 

Karley Henderson  34:17 

So I decided to pick the word for the year. My husband makes fun of me anytime I try to do resolutions. So I found the idea of One Word and I was like, "I really like that. That's perfect. One word, for one year, just to focus on it." Peace came to my mind immediately. I feel like there's so many ways to incorporate it. I want to find peace with my trauma. I want to have a peaceful night asleep. I want to be able to walk into the doctor's appointment peacefully. There's so many different things to find cues with our lifestyle. Peace with accepting everything. I think, honestly, my biggest focus right now is therapy, and, as cliche as it might be. some "me time." There's some times where I don't even recognize myself anymore and I don't like it. I want to know who I am and I want to just find the peace with it. That's the first word. There's so many factors to it. The peace, to find the happiness, to find the contentment. It's just a lot, and that's my goal for the year.

 

Madeline Cheney  35:38 

Yeah. I love that. I really do, it sounds cheesy, but I do really hope that that happens for you. I'm just picturing that and it is such an awesome goal to work towards and I feel like you're on your way. You're doing things like therapy and you're aware of it, and those are the first steps. I wish you a peaceful year.

 

Karley Henderson  36:05 

Thank you, I appreciate it!

 

Madeline Cheney  36:08 

This is feeling so cheesy but I really do, I really do hope that that happens for you.

 

Karley Henderson  36:13 

That's my goal.

 

Madeline Cheney  36:16 

I love that so much. Well, thank you so much for sharing about your mental health and getting real personal about that. I really appreciate it.

 

Karley Henderson  36:28 

Of course, thank you again for having me. I feel honored to be able to be here with you.

 

Madeline Cheney  36:33 

You're welcome. To follow Karley and me on Instagram, check out the links in the show notes. I will never stop touting the value of having a great supportive therapist to help us work through trauma. Some of you will remember episode 25 with my amazing therapist, Rosie. In that episode, we discuss a type of trauma therapy that has been totally life changing for me, so there is a link in the show notes if you want to check that episode out as well. And, one more resource, 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 don't allow for the fees, and if you use the link in the show notes, a portion goes towards supporting the podcast, and there is a discount built into that. So, check that out if that sounds like the right next step for you. Join me next week as I chat with certified Mindfulness Practitioner Anna Smith about the ins and outs of numbing out and how we can stay present in the difficult, the heavenly, and everything in between. See you then.