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Terrible, Thanks for Asking

Kari (Part 2): Sloan - Transcript

This is a transcript of a “Terrible, Thanks for Asking” episode entitled, “Kari (Part 2): Sloan.” The text may not be in its final form and may be updated or revised in the future for accuracy.

Listen to the episode here.


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I’m Nora McInerny, and this is “Terrible, Thanks for Asking.” 

Becoming a new parent is a huge life transition. There’s just no way to put it. What a dumb way of putting it. “It’s a really big life transition.” Yeah, no duh. One day, there’s just a whole new person in the world, and they rely on YOU to know what you’re doing. But you can’t know what you’re doing, because you’ve never done it before! You’re learning right alongside this brand new being, and everything feels potentially HUGE: Did they eat enough? Did they not eat enough? Did they eat too much? Did they poop too much or not enough? Was that a cough? Are they too warm? Not warm enough?

Every transition into parenthood includes the unexpected. 

But for Kari and Aaron, the list of unexpected things is long. When their baby Sloan is born, she is filled with surprises of the medical variety: She has a cleft lip and palate, club feet, and CHARGE syndrome, which is very rare, and is an acronym so complicated I’ll trust you to Google it if you’re really curious. 

And as part of her CHARGE syndrome … Sloan is also deaf and blind.

And that is a long list. But Aaron and Kari, who have been together since high school, know that together, they will take on whatever comes next with Sloan.

And what comes next is a virus called RSV that lands 4-month-old Sloan in the PICU — pediatric intensive care unit. It’s a virus that can be dangerous at any time, for anyone, but ESPECIALLY for Sloan, who is medically complex and has a troubled airway system. 

At the same time, Kari and Aaron also get sick, which means they can’t be anywhere near their medically fragile, special, perfect newborn baby. This is excruciating. 

But Sloan is never without family, because Kari’s parents, especially her mom, have all been taking “shifts” at the hospital with baby Sloan because Kari and Aaron are sick and can’t risk being around their daughter. 

That’s just what Kari’s parents do. What they’ve always done. They show up. And even though they’ve done it countless times before, Kari and Aaron really, truly appreciate it. 

And Kari makes a point of telling her mother that, once Kari is back on her feet, and she and her mom can go to lunch. 


Kari Harbath: Mom and I were holding hands across the table and I was just crying and I was like, “I can't parent Sloan without you, and I can't do this without you.” And I was like, “I just love you so much, and I'm so grateful you're my mom, and you are the best mom.” And I just went on forever. I don't even know what I said. And she was listening. And my mom actually didn't cry that often. Like she was kind of hard core a little bit. And so she cried, which said a lot. And she said, “Those were the best two days I have spent with Sloan since she was born.”


At this point, Kari is back “at work.” She’s been working remotely -- from the hospital or at home or whatever medical appointment Sloan is at on any given day. 


Kari Harbath: I knew Mom wasn't feeling well, I talked to her that morning. They had gone to the E.R. the night before because she had had, like, a stomach flu thing going on. When they went to the E.R., they found that she had diabetes. She had never been diagnosed with it before. And so they gave her some medicine. She wanted to go home really badly. They didn't really want her to go home, but gave her some meds, sent her home. And then she just wanted to sleep it off and take these meds, you know, and go from there. So I talked to her that morning. She didn't sound great, but she was like, “Go see Sloan and then I'll see you tonight.” And I was like, OK. And so I go to the hospital. I'm sitting in a room taking a work call, and I get a text from my dad. 


Kari is on a work call at the time, and if COVID and working from home have taught us anything, it’s that people always find a way to reach out when we’re smack dab in the middle of a work call.


Kari Harbath: I said, “I have two minutes left on my call, can I call you after?” And he said, “We haven't left the house. The EMT is doing chest compressions on mom. It's not good.” So I shut my computer, and I called Dad and Dad just said, “It's not good. I found Mom on the floor.” She had taken a nap, and dad was taking a nap, and he found her on the floor and had to call 911. I said, “OK, I'm- we're coming to get you.” So I hung up the phone and then I just remember saying “Aaron” over and over and over and over and over, just like get to Aaron, get to Aaron. Aaron was with Sloan, just holding Sloan upstairs. And I was like, “This can't be happening.” And I remember running upstairs and I ran to the room that Aaron was in with Sloan. And I just stared at Aaron and Aaron knew something was wrong. And he was like, what? And I said, “Mom.” And he's like, “OK. Let me get a nurse.” And he got the nurse, and he said, “We need to go. Something's going on. I'm going to put Sloan down.” And she said OK. And then Aaron and I left the room, and I just showed Aaron my phone. I couldn't talk. And then Aaron called Dad as we were leaving the hospital, and mom had been pronounced dead. 

Aaron just looked at me and shook his head and tried to hug me. And I started screaming in the middle of the hospital and I said, “We have to get home,” and ... and then Aaron and I took off running, like, dramatic as possible through the hospital. And we got in the car, and I just screamed at the top of my lungs. Aaron was just stoic, and I remember Aaron speeding and I remember being like, you've got to slow down, we can't die, too. I just remember saying, like yelling at him, like, “You've got to slow down, man. We can't die, too.” And I was, like, hitting the dashboard and screaming and, like, curling up in the fetal position. I was like, “Mom can't go. I can't do this without mom.” 

And it was honestly like ... it was just a moment of disbelief, like I ... none of us believed what just happened. Like none of us could believe it was mom. And I think all of us were like, “How do we do life without mom now?”


Mom is gone, and Kari has no choice but to keep going … to do life without her biggest cheerleader. Kari and Aaron move Dad into their house along with Kari’s sister, Kassie, and their collection of dogs … and together they all try to fill the void that Mom left. And it’s a very real void, especially when a new mom doesn’t have her own mom to lean on. Researchers have found maternal grandmas are kind of like a new mom’s superpower. If your mom’s got your back when you’re pregnant, you’re less likely to deal with miscarriage, a low-weight baby, stress or post-partum depressum.

And that doesn’t mean new moms are doomed if their moms are gone. It just means that it might be a little harder. It’s just underscoring the importance of what you know when you have a baby and your mom is there with you. Because moms have been helping their daughters with their newborns for centuries all over the world. And before you shrug off this grandma magic, you should know … only a handful of creatures, including us humans, rely on grandmas to help out when babies are born. 

After Mom dies, Aaron helps Dad with all of the “death stuff” — the cremation, the legal arrangements, the paperwork  — so that Kari can be with Sloan, who BY THE WAY IS STILL IN THE HOSPITAL WITH RSV. 

Mom’s favorite coffee shop helps plan her memorial services, which happen a month after her death. Friends and family gather outside, in nature, in the Utah mountains. The coffee shop even installs a memorial bench dedicated to her. And Sloan, now home from the hospital, is also there, bundled up in a giant wagon. 

It’s all so beautiful. And it’s also unbearable for Kari, who is still dealing with the trauma surrounding Sloan’s birth and all of those unexpected medical conditions.


Kari Harbath: I just remember being like, I'm so lost. And I remember Aaron at one point, both of us were in therapy, both of us were fucked up. At one point he talked about what it was like for me, me Kari, and his therapist said something like, “What it's like is being lost in a grocery store yelling for your mom and you can't find your mom anymore.” And that's what it felt like. It was like- I was just like, “Mom, like, Mom, you going to fix this? Like, where you at?” And she couldn't fix it anymore. 


It’s a brutal dichotomy, to feel that you can’t survive and also that you MUST. Because during all of this pain and grief, there’s Sloan — a baby who needs constant care … not just because, you know, she’s a BABY, and they’re incredibly needy, but because of her many, many medical needs.


Kari Harbath: We have the full, like, at-home hospital set up. So we put on all the SAT monitors, we put on oxygen. We do all we can at home to monitor everything. Like at this point Aaron and I could have our, you know, like, honorary nurse degrees, you know, nurse license because-

Nora McInerny: You're each basically, you're not an RN, but you're an N. 


The loss of Kari’s mom is there in everything that Kari does. In big ways and small ones.


Kari Harbath: When Sloan was home, Mom would show up every morning with Chick-Fil-A or Burger King for me and Aaron, and coffees. Every morning. And she would sneak in the house, Sloan had a medical cart at the time. So she would wait for us to roll Sloan in the cart out so she could snuggle Sloan before she went to work at Home Depot Call Center. We used to call her after every single appointment to tell her something new, and there was nobody to call. And that void was so big and, you know, there's no grandma, like no grandma presence. And so I think we were just, like, trying to find our path now. And for me, I was just really lost in my journey with Sloan and trying to be a parent and a mom to Sloan without mom as my big support and cheerleader in the background, because she always had my back and she was always my biggest cheerleader. 


I want to share something I read in a New York Times op-ed called, “Men, Who Needs Them?” It was written by me, just kidding. It was written by a man, Greg Hampikian, a Boise State University professor with a PhD in genetics. We won’t get into the do-we-or-don’t-we-need-men debate. But what caught my attention was this section, and I’m quoting:

“Think about your own history. Your life as an egg actually started in your mother’s developing ovary, before she was born; you were wrapped in your mother’s fetal body as it developed within your grandmother.” 

The idea that part of our mom and our mom’s mom and her mom’s mom are alive inside of us … I love that. And so does Kari. Because her mom used to say this to her when she was a little girl. But as comforting as words are, and ideas, at this point, she’s a mess. And she’s not the only one. The loss is HUGE for Aaron, too. His relationship with his own parents has been strained, traumatic and is currently non-existent. Ever since he and Kari started dating as teenagers, Kari’s mom has also been Aaron’s mom. 


Kari Harbath: I have memories of like, driving around with Sloan and Aaron and Mom. We would take drives all the time. Aaron and Mom would sit in the front seat. We would get coffees, and then about 30 minutes after the coffee kicked in, they would talk nonstop, nonstop. And they would get to where they would debate. They would get mad at each other. Then they would laugh. Then they would talk about something else. Then they would get mad at each other again. I mean, it was like, nonstop. And Aaron lost that. And, you know, he expressed to me one day that he lost his adult mom, too. And while again, it’s different, it’s a heavy loss and especially one when like, he already almost had a loss of sorts in the changing of his family and the way he grew and decided that he wanted something different. And then he loses Mom. And it was like he can’t get cut a break. 


But we are going to take a short break.





In our last episode, Kari told us how she was bullied when she first transitioned to public high school. How her mental health declined to the point of self-harm and suicidal ideation. Kari’s mom had been instrumental in Kari’s healing, in helping her get the support she needed. 

And we bring this up here because one of the first things people ask when they hear you lost someone to suicide -- questions, by the way, you don’t need to ask! --  is: Were there signs? Did you see this coming? 

Kari’s husband is struggling. In the span of two years, he’s experienced trauma after trauma after trauma. Kari was under sedation during Sloan’s birth, so she doesn’t remember much of it. 

But Aaron does. 

He remembers seeing his wife unconscious. He remembers having to make all of the life-or-death decisions when doctors weren’t able to intubate Sloan. He remembers being told not to get on that helicopter when Sloan was life-flighted, because she might die before the chopper lands. 

And when Kari’s mom dies, Aaron is there for that, too. He’s the one who went to help Kari’s dad handle things with the police and the EMTs. He saw her body. And that kind of thing stays with you.

Kari Harbath: It was like, just nonstop after we got pregnant, through to Sloan's birth, the trauma of that, to Mom's death. And then, you know, you look at Aaron's life experience as a whole. And when you look back at what he's gone through with his own sort of like, past experiences, whether it be complicated family dynamics, you know, he really struggled. He wanted so badly to be something other than his patriarchal influences in his life, whether that was brothers or his dad. That was his experience. That was his truth. And that's what he wanted so badly. And he was working so hard for so long at that. But that catches up to you.  And then not only that, but then like, we're losing a lot of sleep, not just new parents, but parents to a medically complex kid without nursing. So it's like, triple whammy of like, we're losing a ton of sleep. And then Aaron is trying to take a lot on and help me. And, you know, to be fair to Aaron, he was taking it on without verbalizing to me that maybe he needed a little bit more help than he was willing to admit to. 

It’s now spring of 2020, and we all know what comes next. Dad and Kassie have jobs that take them outside of the house. This means they have to move out of Kari and Aaron’s place to avoid inadvertently passing COVID onto Sloan, who is at almost indescribable risk. So Kari and Aaron have lost that in-person support, that safety net, and it’s just very hard. 

Kari Harbath: Mentally, we were both struggling. So I was going to therapy. And of course, during this time, the attention is still on me. Mom to Sloan. Lost my mom. And Aaron is in full support of me. And yet, Aaron, I think in the background, was trying to in maybe a selfless way hide a lot of his own struggles. And he was attending therapy. He was so earnest about everything he was trying to do. He was attending therapy. He was meditating. He was working out. He was doing all the holistic stuff. He was doing all the, you know, scientific stuff, everything everybody lists out that you should and can do, he was doing. And we would go on drives and he was crying a lot. And that was, again, love Aaron, but not out of the norm for Aaron. Out of the two of us, Aaron was the theater kid. He was more in touch and in tune with his emotions than myself. And so it didn't catch me off guard. And he would always talk about how the loss of Mom was hard on him. And I would say, yeah, yeah, I completely get it. And I felt for him on that. And then, you know, as April-May started to roll around, I could tell it was getting a little bit heavier on Aaron. And we talked more at length about it. And he talked about meeting with a psychiatrist and potentially exploring medication. I said, “That's a good idea.” But I also said, like, the way Aaron was acting, to me, always felt a little bit less like depression and more like something else was going on, like, I don't know, you know, what it could be. But just in his behavior, it felt like another kind of diagnosis or something else that maybe needed attention besides, like, depression, because it didn't just seem like a manifestation of depression. And so we had talked at length about it. He met with the psychiatrist over one of those like, video apps, for about 10 minutes. And the psychiatrist prescribed some very generic antidepressants. And he seemed relieved when he came back out of the room and told me, and I said, “OK, you know, I'm on board, I support you.”

Kari supports him, always. But there’s also something in her gut telling her that they need to watch Aaron’s reaction to this new medication carefully. If you’ve ever taken any sort of medication to help with your mental health, you know that it can take a while to find the right medication and the right dosage that works for you. 

So they watch it. And when Aaron’s emotions get more out of control, he talks with his doctor and he decides to stop that medication. But his mental health gets worse. 

Kari eventually learns -- by looking at the screen usage data on Aaron’s phone -- that her husband isn’t sleeping. 

Kari Harbath: Sloan has a SAT monitor and the alarm might go off and he would get up, handle the alarm, and then be on his phone and not be able to fall back asleep. And I think that's where his mind would end up going to other places. And truly, when I look at the way like, his behavior was, it's like he would have these episodes of like, it was just manic. It was like, a manic behavior. And he was- all the time stamps, he would always be up at night. So I assume he's up with Sloan, and then he's on his phone reading up on things or buying things or doing things in planning. And then, so he would do this at night, but then the next day we would be up and everything would be fine. I was oblivious. Some people will say things like, “Oh, were there signs? What were the signs?” Uhhhhh, “He cried said, ‘Mom died.’” So if that's a sign of suicide, you know. 

Nora McInerny: If that's a sign, then fuck all of us. 

Kari Harbath: We're all fucked. 

We’re laughing here, because it helps ease the pain … and because everyone wishes there was a sure-fire, fool-proof way to avoid losing loved ones to suicide. I wish it were that easy.

Nora McInerny: We just have this like, you know, need for things to like, make sense and for them to make sense, like we need to know like that it cannot happen to us, because we will be able to, I don't know, like inoculate ourselves from it. Like if we can just know that you missed something, we won't miss the thing. Because the most frightening reality to us is that the people that we love could die by suicide. Truly.

At this point in the story, Kari doesn’t know her amazing husband Aaron — the boy she’s loved since he first sang John Mayer’s “Daughters” to her in high school — is going to take his own life. She only knows they’re both going through their own grief, their own traumas. And they’re trying to get through it while also taking care of Sloan, their perfect and complicated daughter.

Kari Harbath: Not only are we trying to support each other, but we're both trying to survive on our own, too. So there's like, all of these layers of like, OK, we're supporting each other. OK, now I need to make sure I can survive. Aaron, are you surviving? We've got to just- we've got to make it. Like, we all just have to make it. And so April and May is where things really- I can see are getting hard for Aaron at night, but during the day it feels like things are going better. So it's just odd. He's going to therapy and then... end of May rolls around. There was there was one moment, one moment. This is my one sign. I've got one sign for everybody. This is it. There's only one. We were out for a drive, per usual. And Aaron turned to me and he said, “I've been having some dark thoughts and heavy feelings lately.” That was all he said. And I was the one driving. And I pulled the car over, and I turned to him and I said, “Aaron, I cannot do life without you. I love you. I need you. I need you to tell me what's going on.” And then I said something like, “Whatever it is, we can handle it and we need to get you treatment, get you help.” Obvioulsy junior year, it's been a long time, but with my experience with mental health and suicide and my own experiences, like I know what that feels like. I can relate and empathize to the sort of vacancy that exists when you're just gone, when it feels like it's all over. And I don't even know if when Aaron mentioned that if I thought suicide, but I think I just thought, like, he's just in a really hard, dark place and he's telling me this. And we talked for a while. And then he said something like, “You know what, I'm OK today.” And I believed that, because he was OK today, on that day. And I said OK. And I was like, “But I need you to know that I would much rather you take a week to go fishing and camping with a friend, than we end up somewhere where, like, you're gone for a lifetime,” or something to that effect. And he was like, “Yeah, I understand that.” That was the only time. That was the only sign and the only conversation or thing we ever had around that.

Aaron died on June 2nd, 2020. And we’re letting you know that right up front here, because the next several minutes include talk about suicide. 

Kari Harbath: I got up that morning, and I woke up to Aaron standing right next to my side of the bed. And he had a coffee for me and a piece of quiche. He looked drained, but that also wasn't out of the norm for us and he said something like, “I wish I could bring you coffee every morning for the rest of my life. I love you.” Something cheesy — which again, is not out of the norm for Aaron. And  me being me, this is going to make me sound like such an ass, knowing what we know now. Which I think if Aaron is somewhere with Mom on the other side, he probably would laugh at me. But I just remember being like, “Why are you up so early?”

We went to our Zumba class in the morning. Sloan had OT, which is occupational therapy. And then he had a therapy appointment, which was great. He loved his therapist. And he was making what we thought was a lot of progress. So he went to a therapy appointment, and I was immersed in conversation around everything happening in the world. And I just remember being so heated and riled up. And I was, I was just like, “What is this world we're living in? And why, why?”  And I remember Aaron coming back upstairs, and he looked fine and he sat down on the couch, and he looked at me and he just started talking. And he told me all kinds of things. And it was like I wasn't quite listening to an Aaron I knew anymore. It was like, he was telling me things he felt guilt over, things that he felt shame about, stories of abuse from his past, stories of pain from his past. Then he would throw in things like, “If your mom could see me now, I just don't know what she would think of me,”  or, you know, it was just like, from my perspective, I could tell Aaron was not quite there anymore. I didn't understand the severity, but I knew that something was off. And while he was sharing this stuff with me, he was very open, and honest, and shared all kinds of experiences. And then he would talk about some of the traumatic things we had been through, or guilt and shame that he felt just in his own life. And it was like he was just overwhelmed, major overwhelm. 

I think internally I hit a moment of like, almost critical survival mode myself, of like, OK, Aaron is unwell. Again, I didn't realize the extent. I just assumed, like, maybe he needed another therapy session, maybe therapy unearthed something that was causing him a lot of emotional distress. I didn't realize the extent of planning, the extent to which he had been feeling things and had been reflecting on things and been carrying a lot of, again, guilt and shame and things he had never told me. And then I am looking at Sloan, and I'm like, “Are we OK?” You know, like, again, watching the Aaron, this is not an Aaron I know. This isn't comfortable. Something's off. And so I'm thinking, “Is Sloan OK? Am I OK”  Like, how can I kind of balance this in a way that everybody that Sloan's OK, Aaron is OK, we're all getting the help we need.

And so as the day went on, eventually I said, “You know what, I think we need to get you a therapy appointment first,” because he loved his therapist. I knew if we could get him in with his therapist, that would be like the first step in the right direction, and give me an hour to think about what comes next. Because I knew something else had to happen, but I just didn't know what yet. 

So he gets on his computer, and he says, “I have an appointment.” I don't know, it was like five o'clock. And I'm like, OK, good. And he looks at me, and it was like, I don't know, 4:55. And we always took our appointments in the same spot in the house — downstairs, mostly because I know, again, being married 13 years, after all we've been through, I know therapy appointments, you're going to talk some shit on your spouse. We've got to have some space. 

Nora McInerny: You got to, you got to do it. You're going to say things. You know. Alan, my therapist, he knows he's-. 

Kari Harbath: Yeah, Alan knows. 

Nora McInerny: Sometimes you're just saying stuff. 

Kari Harbath: Yep. And so me being who I am, I'm like, let's take our appointments downstairs in a separate part of the house where we can't hear what we say. 

Nora McInerny: Yes. That's very, very mature. I'm very proud of you. I'm very proud of you for that. 

Kari Harbath: I decide that when Aaron gets off of his therapy appointment, I'm going to go downstairs, get Aaron and take him ... after his behavior that day, it was apparent to me that, like ... it was a manic sort of behavior and that he confidently needed to be admitted somewhere. And I knew that I could talk to Aaron and I could do that. And so I had gotten to a place where I was confident I could stay centered and just get him somewhere, and then we could reset. 


We’ll be right back.



——

Kari has a plan to get Aaron the help he needs. She orders some dinner and watches a little reality TV while Aaron attends his virtual therapy appointment. After it’s over, she goes to check on him and see how it went. 

And as soon as she gets downstairs, she knows that something isn’t right.

Kari Harbath: The energy was so palpable and dark and horrific. The door was shut, and I knocked on the door. I was just telling myself, like, “Kari, you're freaking out. There's nothing- he's just in there in his therapy appointment. There's- nothing changed, like nothing changed. You trusted him to go to his therapy appointment. You're going to take him somewhere. It's all OK. Nothing happened.” And I knocked on the door, and there was no response, and it was just really quiet. And I knocked on the door again, and I said his name and no response. And at that point, I knew something was really wrong. And so I started to, like, rattle the door, and nothing shifted. And so I stepped back and I thought, “What can I do?” Because we were in like, an older home and there really weren't windows or anything else into that room except some really tiny windows. And so I thought, I'm just going to have to call the cops, because I can't get in this room. And as I was standing there, again, woo woo, the door just opened. It was like 30 seconds and the door just opens. 

The door opens, and Kari sees Aaron lying on the floor.

Kari Harbath: I could tell by his hand and the color that he was gone. And he had his computer up next to him and a phone next to him. To the point that, like, when I ordered Chipotle for DoorDash, she texted to make sure she was at the right address — the Door Dasher — and he responded with exclamation points and everything. Like he was like, “Yeah, this is great, thank you so much!” as he was following through with the suicide. And so if that doesn't, like, reinforce the level of like, manic mental illness, he was so far gone, I don't know what does.

As word spreads through their friend and family and coworking circles that Aaron died by suicide, Kari starts to feel that gross and awful thing that so many suicide widows feel right after their person dies: judgment. 

There are the people who tell her that Aaron was selfish to kill himself … as if that will somehow make Kari feel better about the fact that the love of her life is dead?

There are the people who ask a question that’s even worse than, “Were there signs?!” Who instead ask Kari, “How could you not see the signs?!”

It’s not even a question. It’s a statement that shames her.

Kari Harbath: I have noticed a pattern that a lot of the people that do come and make those judgment calls tend to sometimes be people who have never had to go through something that creates more space for empathy for them. And so that's where, like, I want to be like, “Just wait until it's the person that you love the most, that helped you survive your mom's death, that helped you survive, you know, like the birth of your child, you know, and should have received, like Father of the Year award. And then, just wait until that's you. And one day you will be probably changing your perspective, like, and finding yourself with more space for empathy, too.”

Kari spends months in deep, deep grief after Aaron’s death. A grief that she doesn’t think she’ll make it out of. 

Kari Harbath: I'll never be able to I don't think, like, make somebody understand how confident I was that I was going to die — and not in a suicidal way, in a way that I was like, “I know that my heart is breaking, and it's dying, and I'm going to die.” And I was sure, without a doubt, that those weeks following Aaron's death, I was going to die. And I can remember people talking to me about plans, like grocery deliveries, all the logistical things, and wonderful people coming out of the woodwork planning things, doing things for us. And, you know, whether they were talking to me or around me or whatever it was. And if I needed to give permission on something or sign off on something, every time I would do it externally, it would be like, “Yes, that would be wonderful. I need that.” But internally, I would think, “Dad and Kassie and Sloan are going to need that, because I'm not going to be here anymore.”

Historically, Kari’s mom would be the one to step in and offer help when Kari was going through something like this. Now, her younger sister Kassie steps up … as well as an entire community of people who love Kari. Who loved Aaron. Who love Sloan.  

Because Sloan … Sloan needs daily care and help to simply stay alive. And Sloan’s medical needs, they don’t really care that her dad just died!

Kari: After Sloan was born, Kassie learned everything about Sloan. How to change her airway, how to change her feeding tube, how to do all the things that really, like, frighten people to the point that they aren't able to even hold Sloan when she was born, and Kassie just dove right in and she did it all and she was not afraid. And so Kassie stepped right up and she helped me. I could probably just write a book about some of the amazing ways people stepped up for us, and that's because I'm really unique in that experience. I mean, people suck when it comes to grief support. Like, I'm just, I'm in disbelief at how people respond sometimes. And I had some really, truly amazing friends and family, my dad, Kassie. People show up in huge ways that also propelled me forward. 

Things can’t get any worse, right? Oh we wish. A few months after Aaron’s death, both Sloan and Kari come down with COVID-19. Kari seems to be managing her symptoms okay, but it’s a frightening time for Sloan.

Kari: It quickly became apparent that Sloan was like, devolving really fast, like things weren't looking good. And I kept calling the pediatrician and he said, “You know, you're doing your best. You're doing all you can at home.” I was rotating between ibuprofen and Tylenol, watching all of her SATs, keeping her oxygen up, doing all the things.

Kari’s been talking about SATs for a while. We should probably explain what that is. It means oxygen saturation, the amount of oxygen traveling through your red blood cells. If anyone’s SATs drop below 95 percent, ya need help fast. So that’s what Kari’s keeping an eye on with Sloan.

Kari: And then one day she threw up, she desatted so far that her SATs didn't come back up like, you know, her oxygen to her heart rate dipped and they didn't come back up. And so Kassie called 911. And here we are again. 

Here we are again! Back to the hospital! All of the fear surrounding COVID causes Kari to have a full-blown panic attack. She blacks out at the hospital and wakes up to nurses hand-feeding her crackers and juice. Kari got her own wristband to match Sloan’s. She’s admitted to the hospital as a patient. 

Kari: So the next morning, Sloan was doing worse. And everybody was pretty confident that Sloan was not going to make it at that point. So we got up. They wanted to life flight her to the big children's hospital. 

Nora: She loves a life flight. This baby has- she is not flying coach, OK? Life flight or nothing. 

Kari: Exactly. I'm like, you know, she- it's like a Kardashian. She has like, her like, her private jet, everywhere she goes, it's like, all right, dude, we get it. We get it. They told me that I would not be able to go with her. And so I basically said what I thought was my final goodbye. And there were like, again, I don't know, I don't even remember how many, like 10 nurses standing around. They were all sobbing. It was like, out of a movie. And of course, I was upset and I couldn't handle it because I was like, Mom died, I didn't get to say goodbye. Aaron died in the most traumatic, possible, horrific way, thinking that, you know, he was like, I don't know, a piece of shit. And I never got to tell him otherwise or say goodbye or do anything about that. And then now here's my deaf-blind daughter who can't see or hear anybody, taking off, about to die. And I don't have any control over that.

Sloan is in the hospital for a week recovering from COVID-19. At one point, her body temperature drops so quickly, and her SATs decrease so dramatically, that for what feels like the millionth time, Kari is told her daughter probably won’t survive the night. 

But Sloan does survive the night. And the next night. Because as Kari is finding out more and more as Sloan grows, her daughter is pretty damn tough.

Kari Harbath: Sloan's personality, I say badass all the time. And it truly is, like she is the epitome of like, don't give a fuck like, badassery. To the point that sometimes I'm like, “Could you not do that? Like, you're just really exhausting. Like could you not pull your airway out again? Thank you. That would be great.” 

When we talk to Kari, it’s been almost a year since Aaron’s death and two years since her mom’s. Sloan is learning to crawl and walk. She can stand! She sits upright. She can feed herself ... all things that doctors didn’t think she’d ever be able to do.

Sloan still sees dozens of therapists and specialists and doctors on a regular basis. And Kari is learning what it means to be a mom to a daughter with disabilities and complex medical needs. 

We always say, “it takes a village.” Well, it really DOES take a village to keep Sloan alive … and to help her thrive.

Kari: Sloan has a long list of therapies and appointments. When she was first born, I want to say she had something like 25 specialists. And then she has six different in-home specialists that still come through the home now. So currently we have about three to four weekly appointments, hour-long appointments that come to our house. We meet with them, whether it's physical therapy, occupational therapy, speech therapy, the deaf-blind school, and they all come in, and they're amazing people. Parenthood looks a lot different for me, way more different than I ever expected, especially me being me, Kari, with Sloan. And, you know, things are complex, things are different. And there's a lot that I never expected, you know? So again, I don't want to be like, everything happens for a reason and bright side my way out of anything as a parent. But with all of that said. I would not change Sloan as a person. She has taught me truly, and she shouldn't have to, but she has taught me so much about quality of life, you know, life experiences, ableism. I'm learning more and more about the disabled community, what it takes to be an advocate for the disabled community and an ally, really. And I am so grateful for everything that she's brought into my life, and she's just like the baddest badass, and I just love her. 

And you know what Sloan doesn’t want, and Kari? They doesn’t want your pity!

Kari Harbath:  And then I'll meet people for the first time. And, they'll meet Sloan, and they'll realize she's deaf, blind, has a trach, has a G tube, you know, all these things very different than they see the world and that they've experienced life. And their first response is, “Oh, sweet, angelic, special child.” And I'm like, Ooh my God. Like, I- I hate it. I would argue that is ableism too, like we just expect people with disabilities or the disabled community to just like, serve as inspiration porn and be these special angelic humans that, you know, we regard as such without actually living the full human experience. And Sloan is so much more than special angel child. And she also needs to be treated like that. And the reason she has been successful is because she's been treated like that. 

Kari has had a lot of time to think about why there was so much fear and negativity  surrounding so many of Sloan’s diagnoses — and, in contrast, why kids like Sloan (who WILL grow up to be adults, god willing) are put on such a high pedestal and turned into inspirational memes.

Kari Harbath: I just think, like, when we think of quality of life, we look at quality of life as like, keeping up with the Joneses is what I kind of think of. But like you, you know, you have like, the coolest car and you have the coolest house and the perfect family and you have the best PR job in social media. And, you know, like, and you're a smart intellectual with the best jokes. And, you know, like, you look a certain way, you act a certain way and you just fit a mold. Whether people realize that or not, I feel like there’s just this sense of quality of life that is just a mold. And there is no sense of mold when it comes to Sloan. There's no mold. There's no Sloan mold ever, like at all. And when she was born, there were a lot of questions around her quality of life. There was a lot of doom and gloom. There was a lot of like, “This is the worst that could be happening.” And, you know, I don't, I don’t blame anybody for that, like, I think that that's kind of a systemic issue when we look at it, whether it's a lack of education or a lack of awareness or it's just kind of a fact of the way that we are exposed to the disability community. But at the end of the day, Sloan ... she has shown us that, like, quality of life isn't, you know, it may not look like going to Disneyland like we initially planned it. Going to Disneyland now isn't going to be me and Mom and Aaron and Dad and Kassie with a seeing-hearing baby Sloan walking up at 3 years old dressed in the cutest Minnie Mouse outfit and us blending into the background with every other family. Like, that's just not what's going to happen now. And now, we will go to Disneyland, and we will get every extra magical, you know, special Disney experience because of whose Sloan is. And there will be a piece of me that will relish and embrace every moment of that, and then there's also going to be a piece of me that's like, “Nobody else wishes they were here.” And I think that like, with all of that said, she's shown me sort of this deeper depth to life than what I imagined going into parenthood to be.

Kari’s not perfect. None of us are. She admits there are times -- when she and Sloan are all alone -- when she feels all the feelings, including anger… at Aaron.

Kari Harbath: For sure there are times, for sure, where I'm the one up in the middle of the night with Sloan where I'm like, “God damn it, Aaron, God damn it.” And I get the right to do that, of course, because I know that Aaron in his right mind would be sitting with me on the bed saying the same exact thing like, “Oh, God damn it, Aaron,” he would be doing the same thing. And so, I can do that. But at the end of the day, I have so much empathy for Aaron, all the facets of who Aaron was and what he experienced and what he did and everything that he was and did and never experienced or whatever that I feel for him and I still love him to this day. 

Kari has lost and suffered a lot. But she’s gained, too. She has a vivacious daughter who makes her smile and laugh every day. Her relationship with her sister, Kassie, is stronger and closer than ever. She doesn’t want your pity … not for her, and not for Sloan. 

Sloan is now almost 2 years old. Kari sees her mom and Aaron in her daughter every single day. And she misses them … every single day.  

Kari: I'll be places and I'll say something that Aaron would say. And I'm like, oh, damn. You know, like I am Aaron. And ... and I hope that doesn't change, and sometimes I think I get afraid that it will. And ... so I... I work really hard not to allow myself to watch too much “Real Housewives.” And I still listen to the podcasts Aaron listened to, or I try to read books that Aaron would read, you know, to just keep my mind sharp. And in my head, I would have those conversations that I think Aaron would have with me. And I listen to the music that Aaron would listen to with me. And I take those same drives, and I have those same conversations out loud. And even though he's not there, you know, responding, I mean, I know him so well, I know what he would say, and I know what he would do. I really do think like ... a big piece of my soul will belong to Aaron and always was that way. And it's just ... I live and breathe mom, naturally, in the sense that I was her daughter and I have her DNA physically and she raised me and we were besties, just like moms and daughters are. And my mom was really cool. But like, Aaron was a phenomenal partner, and he was a phenomenal bestie. I live and breathe the fact that he's not here, and then I also live and breathe the fact that he taught me so much, I know what to do next, even if it sucks. And I know what he'd want me to do. So I think that's how ... both of them, both mom and Aaron, I keep them with me and I feel them. 

This has been “Terrible, Thanks for Asking.” I’m Nora McInerny. Our production team is Beath Pearlman, Marcel Malekebu, Jordan Turgeon, Jeyca Maldonado-Medina, Megan Palmer. Geoffrey Lamar Wilson did our theme music. This episode was recorded in McInerny studios, known as my closet. We are hoping to someday move out of the closet. I don’t see when that would possibly happen. This is where I live, this is where I work, this is where everything happens. Thank you for listening to this podcast, we appreciate you a lot. Love to have a job. So let me just thank you for that. Thanks for getting me a job, everyone. Sorry, I have heartburn. Oh man, oh man. Okay bye!