Sibling Loss and Organ Donation: Katie / Josh

Sibling Loss and Organ Donation: A Conversation with Katie Kuehn

In this episode, Dr. Angela Dean explores sibling loss and organ donation with Katie Kuehn, who lost her brother Josh to a seizure. Josh was an organ donor, and Katie shares how his decision to give life to others has impacted her family and the importance of organ donation. She also vulnerably shares the impact that his gift of life to others has made upon her. 

Katie and Dr. Dean  also delve into the challenges and opportunities of being a surviving sibling,  how the unique role that siblings play in each other's lives,  how their absence can create a void that is difficult to fill, and how different roles and relationships mean grieving the same person differently, including her sister, Kelly, who is interviewed in episode 6 of this season.

To learn more about organ and tissue donation and to become a donor, please see:

In the US:
1. Donate Life America: https://donatelife.net
2. United Network for Organ Sharing (UNOS) - https://unos.org/transplant/facts/

For a list of organ donation organizations and information by regions in the world, please see https://tts.org/isodp-resources/isodp-organ-donation-societies

Chapters

• 0:00 Introduction
• 1:15 About Josh
• 2:12 Katie & Josh's Relationship
• 7:00 Losing Josh Unexpectedly
• 11:26 Saying Goodbye
• 14:14 Creating the Service They all Needed
• 15:48 Learning About Josh & Seeing His Impact on Others
• 18:47 Defining Life in the "Before" & "After"
• 19:22 Please Talk About Our Siblings
• 20:56 Why Our (US) Society Doesn't Talk About Death
• 22:29 Grieving Josh & Welcoming a New Son
• 25:45 Grieving Differently
• 31:18 There is No Hierarchy in Grief
• 32:42 Sibling Loss is Valid
• 34:35 Where is Katie with Her Grief Now?
• 38:10 Guilt in Grief
• 40:32 Staying Connected to Josh
• 43:20 Josh's Gift of Life: Impact & Testament of Who He was
• 48:41 Josh's Impact on Katie
• 50:55 Katie's Thoughts on Grief in General & Advice to Support Grievers
• 53:51 Katie's Thoughts on Sibling Loss Specifically
• 56:57 Organ Donation
• 57:53 Favorite Memories of Josh

Transcript

Angela: 0:12

Hello and welcome to The Broken Pack, a podcast focused on giving adult survivors of sibling loss, a platform to share their stories and to be heard. Something that many sibling loss survivors state that they never have had. Sibling Loss is Misunderstood™. The Broken Pack exists to change that and to support survivors. I'm your host, Dr. Angela Dean.

Dr. Dean: 0:37

In today's episode, I had the pleasure of speaking with Katie Keene, who lost her brother, Josh. Josh was an organ donor, and Katie and her family have navigated what it's been like to experience grief differently from one another. Take a listen.

Angela: 1:00

Welcome to the show. I will let you introduce yourself and then we'll go from there.

Katie Kuehn: 1:04

Sure. my name is Katie Kuehn, and I am, the little sister of Josh, who, I lost about a year and a half ago and who we're going to talk about today.

Dr. Dean: 1:15

Thank you for that. Before we do talk about losing him, what would you like us to know about him?

Katie Kuehn: 1:21

There are six years in between he and I. And so growing up, I was very much the little sister. And then as we got older, established a friendship, as adults and, he's just always been the cheerleader, the supporter, the person who, your hype man builds you up, gives you all the credit for all the success and the things that you're doing. I actually have, on my wrist, proud of you tattooed in his handwriting from a card that he had given me. And he just was always that person to, support and encourage you. And, not only Me and my older sister, but also, others in the community. And, he was a big advocate for, people in his community and clients that he worked with, and we can get more into that as well.

Dr. Dean: 2:05

For sure. so it sounds like your relationship was, a good one overall. Yeah. do you want to say more about the relationship?

Katie Kuehn: 2:12

Yeah. Kind of a couple things that stand out. when I was in kindergarten, my brother was in sixth grade. And so we were both at the same school. I had just switched, babysitters. So this is in the time of half day kindergarten. and so my first day of kindergarten, I was really upset that after kindergarten, I would have to go to this new babysitter, because it wasn't the same person that had, watched me since I was born., It was a different person. I just, cried my eyes out the 1st day of kindergarten. I had to call him down. He was the only 1 who would call me down from 6th grade and, He wasn't too cool, to do that and to come down and to comfort me, as, we got older, he continued to live in the house, after he graduated from high school and went to, college and then switched from college to the workforce. He still lived, at the house with me and my parents. And even though he was. Six years older than me. He was still very much present. regularly, daily he'd come to, my school plays and performances and things like that. and he was very active in, understanding politics and following the news and, he got me interested and involved in that. We grew up in Iowa. And as a lot of listeners probably know, Iowa is a huge campaign spot, for all presidential elections and, we have a silly to some, caucus, situation versus primaries. And my senior in high school, even though I wasn't old enough to vote, my brother at the time was volunteering for a presidential campaign and I would join him and volunteer and then, volunteered at the caucus and he just got me interested in politics and how it impacted our daily lives. I think a lot of people look at politics as a pie in the sky. It's somewhere else. It doesn't affect me. And so he really helped me to understand how, legislation impacts our daily life. And continued down that trajectory. And it was something that we always bonded on up until his death. honestly, I had, like grief bombs a bit with all of the, latest news on, on the different indictments and things like that. And just wondering what he would have to say about it. And, him and I would probably stay up late texting back and forth watching the news coverage. So that was something we shared. And then, the other place where I really bonded, I lived out in Washington, D. C. and in Indianapolis for several years away from home, and didn't move home until, I was almost 30. I went to college out of state, all that fun stuff. And He always just encouraged me to not feel bad about leaving, about not being, physically present all the time and to just basically, follow my dreams, do what I want to do, always supported me in that. and then I moved home, right around when I got married and at the same time that my brother and sister in law, were placed with two preemie foster twins. I got to watch him become a dad and I got to watch, just amazing father, that he became. I got to watch them, then welcome their son into the world. And so they had three babies within 11 months of each other, age and then, about four and a half years ago, I had my first child and, I now have two and he just, Was so encouraging saying, it's hard. It's really hard. but you've got this you're gonna be a great mom. And so we bonded over just being parents and the everyday struggles that come with being parents and the joys that come with being parents. And, yeah, we talked pretty consistently, mostly via text, but I would say that, more than a few days didn't go by without us. touching base with each other.

Dr. Dean: 5:35

Thank you for so much for sharing that. And you said you have a sister, she's older.

Katie Kuehn: 5:39

Yes, so my sister is 10 years older than me and would have been 4 years older than my brother. Yep. So we had quite kind of a spacing out and I'm also very close to her. it's interesting. I think maybe a lot of siblings go through this with age gaps, but at some point you transition from, the little big relationship to all being adults, and developing friendships outside of that. You're my little sister, big sister type of a situation. And I hit the home run with siblings. We all just became really close with one another. I guess I should maybe asterisk that, when I was 18, just graduated from high school, my dad was in a, almost fatal car crash and, went through, 3. 5, 4 months of inpatient hospital care before he was able to come home and, honestly, probably shouldn't have survived the car accident. and we're so grateful that he did. And we already had a close family, but after that really solidified the need to make sure that we, told each other, we loved each other and, we're just present in each other's, regular lives and, there to support one another. And so I think that. Okay. That also solidified that shift from like big siblings, little siblings to, those adult friendships and dealing with adult struggles together.

Dr. Dean: 6:52

It sounds like for sure that you were able to see the value of life through that event and the value of your relationships. Mm-Hmm. what are you comfortable sharing about losing Josh?

Katie Kuehn: 7:01

So it was a sudden, unexpected situation. It was February 28th, actually of 2022. He and, his wife and kids were all at home, just getting ready for their day. The kids were going to school. My brother and sister in law were getting ready for work. And he had a seizure. He did have a seizure disorder, that had developed, several years after having a benign brain tumor removed. And the theory was that some of that scar tissue on the brain may have caused the seizure disorder to develop. He had several seizures, prior to this one, usually short in nature. and he would recover after, feel tired and his body would hurt for the next day or two, but usually, recovery came pretty quickly. In this situation, the seizure was still short in nature. and. happened as every normal seizure happened. And, he just, all of a sudden after the seizure was over, stopped breathing. and something, caused cardiac arrest. and unfortunately, while they were able to, revive him that too much time had lapsed, For air oxygen to get to his brain. And so unfortunately, he was very quickly not with us anymore. and though his body was with us, unfortunately, after that seizure, he was not. One of the reasons I actually really wanted to share his story with you, what had always, chosen to be an organ donor on his driver's license. And that was something that, he had conversations with his, spouse about as well. And The seizure happened on a Monday morning and by Monday afternoon, we unfortunately knew that, brain activity didn't look good. And, by Tuesday, solidified that he wasn't coming back to us. and so then, I don't know if it was Tuesday or Wednesday, but it's all kind of a blur. But those conversations did start with, the donor network, on, the possibility of him donating his organs. and The seizure and his hospitalization was on a Monday, and then Friday afternoon, he was able to have the, retrieval surgery, and then, through that was able to donate his heart, lungs, both kidneys, as well as skin, bone and tissue, and corneas. And we said goodbye to him on that Friday, afternoon at the hospital. And, I'm sure that lots of people have seen kind of those viral videos of the donor walks and, the hospital did that for us and, really honored him, as we said goodbye. And then, we actually went out to the, Regional airport and watched, as his, heart took off to go to his recipient. and it was obviously, super depressing. but also just, something that kind of gave us a little glimpse of hope and every and everything. I honestly don't know how I would be coping if he weren't an organ donor. it's something that has brought a source of comfort, I think, to, at least some of us in our family, that he chose to do that.

Dr. Dean: 9:53

Yeah. Thank you for sharing that. That's so emotional. You see those donor walks on, like you said, the viral videos and then I didn't realize that you would. Be able to watch, where the heart was going

Katie Kuehn: 10:04

Our, donor family advocate that was there, she was phenomenal and treated our family with dignity and respect and just really kept us informed. She answered phone calls at all hours of the night if any questions came up and, My mom felt it was really important that they find, a placement for his heart. That was something that, that really, was important to her. And, they were really struggling to actually find a match and they called her, middle of the night, Thursday night into Friday morning to say that they had found a match. And they were wonderful and, And keeping us updated and allowing us to be, as much of a presence in the process as possible. and then, the other kind of neat. I don't know if it's neat. This whole situation isn't neat, but, they had our family, my sister in law and my sister and I, and my mom all got together to write it, but they had us write it. a story of who, Josh was, and, that was something that was read prior to his surgery so that all of the, doctors and the individuals involved in the process would know, the life of the person, giving their organs and and, they also, took a playlist so that they could play, music in the operating room as well, that Josh liked. They did a lot for us to try to, honor Josh, honor our family. Allow us to be as involved in the process as possible. on, the crappiest day, I think for all of us,

Dr. Dean: 11:26

Yeah. What was that like having to say goodbye to him that Friday?

Katie Kuehn: 11:31

It was so surreal. Honestly, there's times I still think about it and I'm like, is this real life? did that really happen? It was really tough because, some kind of dark humor, here, but my sister and I have dubbed the week that he passed away as like dead brother week, because a lot of people have a date of death. and it was a week long of he was there, but he wasn't there. And, and what do you really even define as like. When he was gone and when you said goodbye and all of that. And so all of us in our family have a different answer to that question. and so we all just buckle up and prepare for that week. and we said goodbye. his closest family and friends, that could make it came up before, and say goodbye. We're allowed to break all of the COVID rules, and had, I want to see 15 people, for the honor walk that we're able to come and attend. Again, it's just so surreal you, you walk to this elevator and you're forced to say goodbye as they will them into this elevator. And, it's something I'll never forget and, My sister in law lost her husband and the father of her kids. My parents lost their son. My sister and I lost our brother. People lost their good friend. So it was really surreal to be standing in the same space with all of these people that loved him. And, to realize the impact of his relationship on all of us. and that, that was ending. and it was really hard. And then it was even harder to leave the hospital, because that kind of really, solidified, we weren't coming back to the hospital. and that, that was it. It was really rough. I was also at the time, 36 and a half, 37 weeks pregnant, with my second child. And that added to, all of it. My husband and I just decided that during that week to, rent an Airbnb, um, that. my family and my sister's family stayed at because we were from out of town and we just allowed it to be a pass through place for people that were coming in town, family and friends to stop by. We had a bunch of food and a bunch of things and, So we just all went, went back there that evening and, and prepared for, what was next and, figuring out services. And, it was really weird to, I was writing an obituary for him on a Wednesday when he wasn't even gone. We were coordinating to go fund me to try to help my sister in law with expenses, before he had, officially, left us. And so it was just, it was a really weird, week, and I feel incredibly fortunate that family that I have is close and that we were able to, work together to figure out what came next. My, parents are, devout Catholics. My sister in law, I would say, would, prior to my brother's death, would classify herself as an atheist. my brother was spiritual, not religious. And there were quite a few different, maybe needs or desires. on how to honor him, say goodbye. and, one thing I am very proud of our family is just figuring out how do we make that work for everyone. And so my parent's priest was involved, and my brother's good friend who is a pastor was involved. And, there was a mix of, storytelling. And His services were a little unusual and that we did the services 1st, there was some. Religious tradition at the beginning of the service. and then my brother's friend Doug, a former pastor got up and said a prayer, did some stories and then My sister and I spoke, my sister in law spoke, my brother's best friend spoke, and then, he opened it up to everybody at the funeral, and people just lined up and came and shared stories and some that we had never heard before and, and then afterwards we went straight into a visitation, so that we could see all of the people that had attended and His visitation was four hours long and the last person came through the line about 10 minutes before it was over. it was, I would say like I've said to my husband before, that's the kind of celebration I would want, where you just open it up and let people talk and share memories and stories and celebration. and it was, I think my parents got what they needed from a religious standpoint, and then I got to learn things about my brother. I had never known that day. and hear stories from high school friends that were silly and, ways that he impacted students at the school he worked for, that I would have never heard. that was really special. part of saying goodbye.

Dr. Dean: 16:01

Did you write any of those stories down? The one ones you hadn't heard?

Katie Kuehn: 16:05

we haven't, I actually, I had this like wild hair and I have not done a good job of, Of following up, but I had a friend of ours create like a gmail account that people could if they wanted to write in and share stories and the goal there is to have stories to give to his kids as they get older. I did a lot at the beginning, Both out of, I think, Needing an outlet needing to stay busy, but also just the focus was really to help Sarah and my brother's kids figure out what was next and just get through the day to day. And so my husband and I opened a joint bank account with my sister in law to help her manage finances and figure out bills and to do as much as we could to make sure that they had a secure financial future. And, really just, immerse myself in a lot of different things, and that is one that I came up with in that time that I haven't really, followed up on, but it's, it is one that I would love to continue to encourage people to write into that email address.

Dr. Dean: 17:13

hmm.

Katie Kuehn: 17:13

and I'd love to, some of them will not be appropriate for the age of his children yet. Um,

Dr. Dean: 17:17

Mm hmm. Mm

Katie Kuehn: 17:18

I would love to have those as they grow older and can see how silly, their dad could be.

Dr. Dean: 17:23

Did it help you remember things that you had forgotten?

Katie Kuehn: 17:27

Yeah, it did. His best friend is the same kind of inappropriate, humor type of a guy that my brother was. And We would get the kids to bed at my sister in law's house and then, a lot of times just sit there and, tell stories and his friend Roy, in his very inappropriate nature would have us all crying, laughing. and my sister and I remembered in some of his wilder days, picking him up at four in the morning from Ross's, which doesn't even exist anymore, but it was like a 24 hour diner under the bridge in our hometown and, him reeking of cigarettes. Cause back then you could still smoke in restaurants and bars and, Picking him up and being like, we have to go see grandma who was in the hospital like that next morning. And, um, just some silly things like that. he and my sister moved me into college because my dad was in the hospital at that time. And so just remembering how they kind of became my parents in those early days and, Remembering that when he started dating, Sarah, my sister in law, she's actually my age. And so I would give him a lot of grief that he was, dating someone that was his little sister's age. And yeah, I think, and I know we'll probably talk a little bit more about like coping and all of that, but I think one of the things that as time has gone on and I've talked to my therapist a lot about is, so much of my life feels defined by his death, like very much a

Dr. Dean: 18:55

before

Katie Kuehn: 18:56

and after. So much about, what I think of him as is based on his death and 1 thing that, I've been trying to work on is he had 41 years of life. 34 of those I shared with him, before he passed away. It feels good to talk about those memories and to bring up things that aren't his death because that isn't what defined his entire life. And I think that's one of my and maybe you can relate, frustrations. people are afraid to maybe ask about your sibling that passed away or they don't want to bring it up. And I welcome it. Honestly, I wish that people would bring it up or, if they think of a funny story, send it to me. I know he's dead. That's not going to change, but if you have something that you remembered that you did in high school with him that I don't know about, I would love for you to tell me. isn't going to change the fact that I, I know he's dead.

Dr. Dean: 19:53

Right. And I think that some people are afraid to bring that up because they don't want to upset us,

Katie Kuehn: 19:58

I think you're right.

Dr. Dean: 19:59

but the freedom of being able to talk about our siblings helps us stay connected to all of that before. instead of focusing on the death. And I also wonder if sometimes people don't bring it up because they're afraid of feeling uncomfortable themselves.

Katie Kuehn: 20:19

Just generally, I think our society is and I don't know where it comes from, just so scared of talking about death, talking about loss, and I think even more than that, talking about how grief is not a finite thing, and that, there's just this expectation that life gets back to normal after a little while, right? And, I am not who I was, when my brother was here and I never will be like, I will never be the person that I was, before my brother passed away. And, that's just another example of, something secondary to work through.

Dr. Dean: 20:56

Yeah, for sure. Part of where our fear of death comes in our society is that, prior to the industrial revolution, death was a very present thing. You died in the home, or you... people saw it, and now just like your brother, a lot of death doesn't happen or people aren't seeing it. So it's something that we're not, so familiar with.

Katie Kuehn: 21:17

Yeah. Yeah. And, Take it or leave it from living in a very, hyper focused, capitalistic nation. But there's just that drive that, we got to get back to doing what we need to do and getting back to working and providing for your family and, and all of that. I think. In the States, especially feels maybe a little bit more of a rushed timeline, maybe than in other places.

Dr. Dean: 21:46

Mm-Hmm.

Katie Kuehn: 21:47

Technically, I was supposed to get three days off for my brother's death. Um, very fortunate to have, flexible time off at my company and to have a boss who's very understanding, and to have had a baby, and to be able to, I had 12 weeks off with my son, after he was born. And so I went back to work for one day before my son was born, and then had 12 weeks. And I honestly look back and I'm like, I don't know how I would have gone back to work, full time without that additional time off. And that just is how the timeline fell.

Dr. Dean: 22:21

So there you are, grieving and also welcoming a new life. What was that like for you?

Katie Kuehn: 22:29

Oh, a whirlwind of emotions for sure. it still brings up so many emotions. My son, Declan, was born, on March 17th, and that was, three short weeks after my brother passed away. My husband and I had been struggling to figure out a middle name for a very long time, had thrown out a couple different ideas, but just weren't set on any of them, and I can still, remember walking out of the elevator in the hospital towards my brother's room with Sarah, my sister in law, and just saying, is it okay? With you, if Declan's middle name is Joshua, and having to hold her up from falling to the ground and her being grateful that's something I wanted to do. And, I asked my mom and she said, I was really hoping that's what you would do. But I didn't want to put it in your head. That's something that you should do. and so he is Declan Joshua. He is a total spitfire. and sometimes I'm like, this would be your personality named after my brother. He was born on my brother's favorite holiday, St. Patrick's Day.

Dr. Dean: 23:35

Hmm. Mm

Katie Kuehn: 23:36

and has, strawberry blonde hair and my brother had a very red beard. And so I'd like to think that maybe my brother had a little bit of a hand in, his arrival when it happened, and maybe a little bit of that red tint to his hair. but yeah, it was a really emotional time because it was something my brother was really excited for us to have another, child. I still struggle with the fact that they never existed in the same world. And that, my brother never got to meet him, because he was just so excited for us. He loved the name Declan. I'm glad that we shared that with our family before, he passed away, what we were going to name him and, it was this mix of, you have to care, 24 seven for a newborn. It was a mix of, distraction. yeah. joy because it's this thing that you were so excited to bring into the world, getting to watch my older son, Rowan, fall in love with his little brother, and to just wish for them to have that sibling bond that I shared with my siblings. So it was just an array of emotions. I think in many ways, Declan was a bright spot. for our family, I think, my sister in law will openly say, he's my favorite, because I think, just him coming in to the world at the time that he did, brought some joyful distraction to all of us. and yeah, I definitely think that there was some joy. It also felt like a lot of pressure to put on a tiny little baby, to bring, joy and hope and, and to try to fill that sadness felt like a big role to put on such a small child and still feels a little bit like that at times where I struggle with, I never want him to feel like he has to live up to some certain expectation,

Dr. Dean: 25:17

Right.

Katie Kuehn: 25:19

or be, you

Dr. Dean: 25:23

Yeah.

Katie Kuehn: 25:23

know like a replacement. And but he's a special little boy and he, he's gonna be a wild one. And my brother had, a streak of maybe not wanting to listen to authority and not

Dr. Dean: 25:35

necessarily

Katie Kuehn: 25:36

Mm hmm.Um, uh, buying into all the rules and things like that. And I'm just buckling up for, that potential that he's going to take after his uncle

Dr. Dean: 25:45

Yeah. Can we go back to something that you said earlier? So you described the scene where you're saying goodbye to him at the elevator and realizing that each of your family members had been impacted by Josh differently. And I think it's important, to explore the idea that not only are we impacted by someone differently, but that also means that we grieve them differently. And I wonder what that's been like for you or what your thoughts are around that.

Katie Kuehn: 26:16

You're absolutely right. I think, we've all developed different ways of grieving. I think, Initially, and this is not a reflection of my sister in law at all. initially, I felt as though, I needed to put my grief aside because, the important thing was, how do we get my sister in law, Sarah, and the kids, through each day? How do we help them navigate their grief? How do we help them navigate, having two, two five year olds and a four year old realize that, their dad isn't coming home, how do we help Sarah become a solo parent. You had two people splitting all of these responsibilities and suddenly it all Is on you. My brother understood all the finances and all of that. So that was something that I took on as far as my sister in law didn't know who held the mortgage, and so figuring out who is that mortgage company. We need to pay the bill. Like, how do we get this switched from his bank account to her bank account and all of the kind of the nitty gritty. And so I didn't really. Even start processing my grief between raising a newborn and trying to help, Sarah and the kids navigate just the day to day. I didn't allow myself to even really grieve, other than there would be times where, when my husband was on his paternity leave, I would just stay in bed for as long as possible and just not have to deal with anything. and those were the only times I really allowed myself those pockets of I'm going to feel for myself and feel that emptiness and that sadness. I think that is. the general consensus I would say for my sister and my mom as well. My dad's a different story because he doesn't like to talk about his grief, how he's feeling. Sometimes just talking about Josh, he has to step away. He's just handled it completely different. My mom and my sister and I all jumped into action a bit. and tried to figure out, how we could just help the kids, help my sister in law and, my mom. also was always that person that we would go to for problems. So if we were all like bickering as siblings, if like my brother and I were mad at my sister or my sister and I were mad at my brother or whatever it would be, she would get calls from all three of us and she would have to just navigate our problems and helping us work through whatever little tiffs we were having. So she felt like she always had to be the strong one. She always had to be the person. To take on everybody else's, struggles and that kind of corresponded into a conversation that her and I had probably almost a year after we lost my brother and, I quite honestly don't even remember exactly what the conversation was about, but she made the comment of I'm not allowed to have an opinion. I just need to like, be there. and I was like, why would you say that? She's that's just always how it's been. And I said, but is that the role you want? is that? the role you want here, or do you want to share your opinion? Do you want to have a say in, in whatever it was that we were talking about? And, she had never, I don't think thought that was something that she could allow to happen, for her to actually open up and talk about her own grief and navigate her own grief. So all of us have had different ways of navigating it. I had a therapist prior to, my brother passing away, for anxiety related situations, especially, it got worse when I was pregnant. So I went back to see a therapist when I was pregnant. and then, my sister in law was in school at the time to become a therapist and to be a social worker. She actually, I think, within the first month of my brother passing away, had given referrals to 11 different people for therapists, and my sister, got signed up with a therapist. My mom has attended a couple different grief groups, that her church has put on, and she's developed some friendships with other women who have lost children there, that I think has been really healthy for her. My dad went to therapy, for a very short period of time. and I think felt like, that was all he needed. I would argue differently, but we are all on our own journeys and timelines. And I try to not force anything, upon him, but. I do think that, for him, it's easier for him to not talk and acknowledge it. The other thing that's been an interesting, kind of development and ride is, how all of us have come to either embrace or not embrace, the organ donation, part of his story. So for me, I very early, on got involved with the Iowa donor network who, supported us, during the process. I've done some. There's a walk every year, for a fundraiser. And I put together a team, right after he passed away. It was the walk was in May. I put together a team for fundraising and we did that again this year. and my mom and my sister have also both gotten more involved as volunteers. But that is still a source of trauma for my sister in law actually. And so it's something that just, does more harm than good for her, to do that. But one thing that I've always been so grateful for is that my sister in law has always said, there's no hierarchy in grief. There's no one person's grief is tougher, better, or worse than another person. And, one person's. Way of finding comfort is different than another. And, I've many times asked her for permission to do things in honor of Josh or to get involved with the Iowa donor network. I asked her for permission to come on this podcast. and she's never expected that. It's just, I want to respect everybody else's, grief and how they're handling it and, her response about this podcast is I don't have to listen to it if it's not for me. if it's not something that is going to bring me comfort or joy, then I don't have to listen to it. But if it's something that you feel is a platform to share about your brother, about sibling grief, just I think that you should do it because I think it could be healing for you. And I think it could be healing for others. And, she's never been. never tried to hold any of us back from whatever way feels the healthiest for us.

Dr. Dean: 32:22

Right. And I think that's an extremely important point that you made through her, that there is no hierarchy in grief. It's just different. And I think, where sibling grief is not acknowledged, it doesn't mean that it's harder. It just means that it's not acknowledged. And that's why we're talking about this.

Katie Kuehn: 32:42

absolutely. And I think I still have to remind myself, honestly, that my grief is valid. Why wouldn't I be mourning someone who literally had been in my life from the beginning? I think there's so many times and again, it's a different, it's not a hierarchy, but, it's how are your parents doing or how are Sarah and the kids doing? And those are absolutely valid questions to ask. And I appreciate those questions because that means that you've been thinking of my family. but it's, it's not necessarily. Thought of at how impactful losing a

Dr. Dean: 33:18

Mm hmm. a

Katie Kuehn: 33:19

sibling really is.

Dr. Dean: 33:21

Yeah.

Katie Kuehn: 33:22

and so that's something that, I found your podcast when I was, trying to find resources, to, does anybody get what I'm dealing with? Does anybody understand just this like deep, immense sadness, that I feel, Not being able to share my life with my brother anymore. and finding this podcast was really helpful just to be able to hear others that have dealt with it because it's not a common, maybe it is a common loss. It doesn't feel like a common loss. It doesn't feel like it's happened to anyone else.

Dr. Dean: 33:56

hmm.

Katie Kuehn: 33:57

And so hearing others speak on your podcast about what they've gone through and the complex feelings of sibling grief, really makes you feel less alone.

Dr. Dean: 34:08

Yeah. thank you for that feedback. I'm so glad that it's been validating and helpful in that way. I sought out doing this for that same reason. There wasn't a lot there. And so I'm glad. Thank you for that. So you put off your grief. It sounds like partly because you had a newborn, partly because you were taking care of Sarah. Where are you with your grief now? Or coping with it? And grief's, never ending, but where are you?

Katie Kuehn: 34:35

I am, dealing with it, I would say now. I would. argue that it took me probably at least nine months before I really, dove into actually dealing with my grief. The therapist that I saw after my brother passed away, it felt like my one hour weekly sessions with her were more of just a dump of this is what's going on with figuring out, how to get the kids registered for summer school, or this is what's going on with. We were trying to sell the house and get them into a different house. It was a data dump and it was like the one hour I had a week to cry about it. And then it was like, back to business, Back to, work back to family, back to helping, Sarah in whatever ways I could and, my therapist actually ended up moving out of state and I had to find a new therapist. and it's dating, right? I'm finding a therapist a little bit. and I didn't realize, maybe what I was missing in therapy until I had moved to my new therapist. And, a lot of, It was a lot more conversational versus me just dumping

Dr. Dean: 35:42

Mm

Katie Kuehn: 35:42

the latest update, right? That you would give your girlfriend at a happy hour or whatever. and so it was a lot more conversational and, there's some kind of accountability there that I hadn't had before as far as, you. need to focus on yourself. You need to do things to work through your own grief for the benefit of yourself and your own family that you have. And helping me to see that my best self is my best self for my husband, for my kids, figuring out, how to navigate that grief. And then also, helping me have permission to sit with it sometimes- to not try to, distract myself or, move past it, but to really just sit with it and to be okay with feeling really sad. and allowing myself to feel sorry for myself, allowing myself to be angry, at the situation, allowing some of those feelings of, frustration at family as we navigate this, because we're navigating what our roles look like as a family. My sister in law, Sarah, I consider her to be, as close to a sibling as you can get, without growing up with one another, and so navigating, she calls my parents, mom and dad, she's, she lost her parents at a young age, and, she really, from the time that she started dating my brother, became part of our family. Navigating what does that look like for the future for her and our relationship and the relationship with our children? and the idea that, there, there may be another person that comes into her life and to the children's lives and, navigating what does the future hold for all of us as a family? My therapist has been really helpful in focusing in on, the now and the, we will cross those bridges when they come and we will, let's focus on the present. And what, how can work through your grief and, still be the mom you need to be, and all of those things. I go through waves. I think, grief is an incredible, companion, I guess you would say, in the sense that sometimes it makes itself very well known. My nephew turned six at the beginning of this month, and it was also my dad's seventy-first birthday and everybody came to my town and we went to the water park and I hosted brunch at our house to celebrate birthdays. It was incredibly joyful and we had such a fun time And then I felt like a total asshole after everybody left because I was like I enjoyed all of us being together and Josh wasn't there, so I shouldn't be enjoying it. I should, I should be sad that he's not here, right? and so there was that, it's that wave of, the after effects of, and it seems like it's a pattern, and whenever we get together with the family, it's really wonderful, and then afterwards, it's like that, but Josh wasn't there, and it's painfully obvious that he wasn't there.

Dr. Dean: 38:39

There's this guilt for living your life afterwards. Yeah. I'm hoping that you have worked through that with your

Katie Kuehn: 38:45

Yes, that is a,

Dr. Dean: 38:47

therapy on the air here.

Katie Kuehn: 38:48

yeah, no, that is a topic that comes up often and a topic that she reminds me that, there's, righteous guilt. There's things that we made an error or we made a wrong choice or we hurt someone. And maybe there's reasons to feel guilty, but this isn't a righteous guilt. This isn't something that, That I should feel guilty for. And so it's, I grew up Catholic. it's a thing

Dr. Dean: 39:10

Yeah.

Katie Kuehn: 39:11

just is embedded in us, a bit. And

Dr. Dean: 39:13

Yes, it is.

Katie Kuehn: 39:14

yeah, still working through some of that. but yeah, it's been, this month has been hard. I've had a hard time. My youngest has been going through, some health stuff and he's fine, but it's been a lot of doctor's appointments and, some added stress and, That's stuff that I'd usually, talk to my brother about, right? And between him missing Sawyer, his son's birthday, his twin girl's birthdays are coming up, next month. There are times where just feel it more. Um, and this month has just been one of those months. and I. allow myself to go take a bath and, after the kids go to bed and, try to just either read a book or do whatever I need to do to center myself and I allow myself to cry if I need to cry and, I think the further away and I know you have more experience and time, passing, but I think the further away I get from his passing, the more, I'm looking for things to cling to, to feel close to him. And I think lately it's been hard to find that. And That's just something you work through, right? figuring out how do you continue to, feel that connection. And, one of the, one of the things that I was looking forward to the podcast for is to just be able to talk about him, and to feel connected again. and so this comes at a good time.

Dr. Dean: 40:32

Yeah. Are there ways that you find are steadfast in helping you feel connected? Because I think it is important to find ways to have that connection

Katie Kuehn: 40:42

Um, I really, enjoy, anytime I'm able to connect with the Iowa Donor Network. that's been something for me that has felt meaningful and significant. It's something that, a lot of the folks that work there, have their own, personal connections with donation, whether it is, a family member of a recipient or a donor. and it's just, there's no shame in any sort of grief or crying. Everything's just out in the open. I can, in one breath, talk about how, my brother could be a total asshole about this and then in another breath, I could say, I'm really sad that he's missing his kid's birthday. And it's just, there's just an open acceptance to talk about your deceased sibling there. And so I think, or your deceased loved one in general. So I think anytime I'm connected with them, anytime I'm volunteering with them or trying to do fundraising work for them, I feel that connection and that, I know that's what he wanted to do. and I hate that I now know what it's like to go through organ donation and that process and to be a part of that club. But at the same time, there is that connection with people that have gone through something similar. And there's just that openness of you've gone through something hard and feel free to talk about it. and I think that's something that I crave a lot is: Feeling like I can talk about it and be open about it without like totally being a buzz kill. And so I think being open with them. It's nice because there's no judgment. There's no expectation that you're not going to be open. I even struggle just sometimes, like I'm going to happy hour this evening with some girlfriends that I haven't seen in months and I can't wait to see them and, they want to know what the heck I'm going to be on a podcast for tonight I haven't really totally filled them in yet, but it's also that do you talk about it? Do you not talk about it? I don't want to like totally ruin the mood. Everybody else has things in life that they're going through too. That permission to talk about him is, I think, something that I long for that, and I know that if I talk about some of it is on me, some of it is internalized that, I've known these girls most of my life. They grew up with my brother. some of it is internalized of I don't want to like be a buzzkill and ruin the night. but I do think one thing that I would. love as far as continued support is for people to just come out and say,"Anytime you're feeling like you miss your brother and you want to talk about it, you know you can talk to me about it."

Dr. Dean: 43:09

I had a pin on my bag for a while that said, ask me about my sibling. For that reason,

Katie Kuehn: 43:14

Oh, I love

Dr. Dean: 43:14

okay to ask, right? Yeah,

Katie Kuehn: 43:17

Yeah. It is okay to ask. okay.

Dr. Dean: 43:20

I have recently connected with someone, involved in the organ donor network. And I was impressed to learn just how much they support grieving donor families. And so I'm glad to hear that from you as well. Did you meet the recipient families at all?

Katie Kuehn: 43:35

We have not, One of the cornea recipients, very early on reached out to our family, in a letter. He had a, congenital eye disorder of some sort. It was, a familial situation, his dad had it that type of situation and he had lost his sight. And so he, very early on reached out and thanked us for that gift of sight that he got a site back to be able to, see and interact with his son. And, that came. Within two weeks of my brother passing away, and very grateful that was something that, he chose to do, the donor network does give you, just a quick snapshot of this, the heart went to somebody and it's up to the recipients to say, What they want to say, but, the heart recipient went to somebody who has a wife and 2 young kids. The, 1 of the kidney recipients was a father of 5 and a U. S. veteran who had been on dialysis for 3 years. So you get little snippets. and then after 2 years, we will get an update of here is how many people he's impacted with bone and tissue and skin and all of that. Six months after my brother passed away, I did write a letter, to his, heart recipient. and that's something that the donor networks facilitate, so that it's anonymous. wrote them a letter, just to tell them a bit about Josh and our family. And right before Thanksgiving, we actually did get, get a letter back from them. and it was, incredibly emotional, I think for all of us. I think, from getting to know a few of the, employees at the Iowa donor network who are on the recipient family end of it, they had expressed if you don't hear back, know that, it is appreciated, but it's really hard to even figure out how to say thank you for something like this. When we heard back from his recipient, it was it. I couldn't have written a better letter. It was so just gracious and loving and kind. and we learned a little bit, about them and about their family and, just that promise that they were going to honor Josh, and live their life and, loving on their family and their kids. And, it was really impactful, I think, for all of us.

Dr. Dean: 45:43

mm,

Katie Kuehn: 45:44

We've since written back. We haven't heard anything back. But again, it's like everybody's on their own timelines. We do on on our side of things have the desire that if a recipient did want to meet us that we would be open to that. But that's just something that time will tell. We also just recently received a letter, which I never thought would happen from somebody who received tissue for an MCL reconstruction. and they wrote just a really kind letter about, they had, lost somebody close to them and had been really struggling with grief and depression and they started volunteering on their local fire department. And it brought this sense of joy and service to them. And when they hurt their knee, obviously, they weren't able to continue that service, and that, while a tissue donation isn't a life saving donation, in its physical form, that they thanked us because it was a life saving, donation for their life and impacted them in such a way, and Those continue to just be reminders of that ripple effect, of that impact that my brother continues to have and, It's crazy to think that like his physical heart is literally keeping someone else alive is beating in someone else's chest. And it's just a testament to who he was. And he was very giving in life. he worked with, and those with disabilities, doing respite care for most of his career. And, he just showed so much love and kindness and compassion. He would throw dances for his clients, once a year with his own equipment and rent out a so they could have some fun. He, had a client who was wrongfully convicted and wasn't able to go on to, a government property where his grandfather was buried and he wasn't able to visit his grandfather's grave. And Heller, come Heller Highwater, my brother was going to get him.

Dr. Dean: 47:37

mm,

Katie Kuehn: 47:39

to see his grandfather and he did, and, he advocated for, he was involved in harm reduction efforts in his town and, educated people on Narcan and, all of that stuff. He trained some of our local legislators on the use of Narcan. He volunteered for political campaigns and it was all about, service to others. It wasn't flashy. It wasn't shiny. It was how can I, impact the least of those who don't have a voice who aren't lifted up. And, yeah, he just, he was always an advocate and pushed to help others and then obviously, in his death, he was able to do that as well. I have to try to, give myself that pep talk sometimes and remind myself that even though he's not here, the impact that he had on others is still very much here.

Dr. Dean: 48:26

It sounds like he was very compassionate and loving and caring, and I wonder how you can carry that forward and see that he cared for you as well. Like your grief is valid, too, and That impact

Katie Kuehn: 48:41

yeah, it's actually something I hadn't really thought of before. as you say that as far as I'm always thinking about, the impact that. He had on the world. but maybe I haven't given him enough credit for how much impact he had on my life. and maybe that's an avenue, a good avenue to focus on as with grief as far as just how much he did impact. A lot of what I did I followed my dreams and, he was the one that was local with my parents and always took on those responsibilities of making sure that if the snow needed shoveled, that they had a service set up or, he'd go out and do it or he'd go help my dad with the host of, Computer and internet connection problems and all of those things that come up. There was never any sort of, jealousy or any sort of, never made me feel guilty that he was taking that on, and taking on those responsibilities of being local, and doing those things. he always, wanted me to do what I was doing. And he always told me how much of an impact I was making on other people and on the world and the job that I had in my twenties. And, he was incredibly, humble to the point of being, Self- deprecating like he never really gave himself credit. He was just a guy that, it took him until he was 39 to finish college. And, didn't do anything flashy or fancy. And, he never gave himself the credit. that he deserved, to give himself, for the impact that he had on people.

Dr. Dean: 50:07

Yeah. It sounds like you're able to see that impact and honor him for that now.

Katie Kuehn: 50:14

Yeah. And whether I've seen a couple of mediums since he's passed away and, whether you believe in that whole thing or not, one of the mediums did say that, he was able to, view his celebration of life and, to start to accept the fact that he did have an impact on others. In a way that he did not in life. So I'd like to think that he has in whatever spiritual sense, recognized the good that he did in this world.

Dr. Dean: 50:41

This, theme of medium has come up in many recent interviews I've done, so I'm not sure what to make of that. but I think it's fascinating. So are there things that you would like people to know about sibling loss specifically that you wish you knew a year and a half ago?

Katie Kuehn: 50:55

I think, yes, I think bigger picture from grief in general, I would like. People to know that when you are first grieving, you have no idea what you even need. and if you ask me what I need, I'm probably not going to ask you for anything. because I just don't know. had two really good friends, that really stepped up and were there for me and have continued to be there for me through my grief journey. And one of them, my brother was in the hospital and subsequently for weeks after, he passed away, would text me about halfway through the day. Have you eaten today? Are you drinking enough water? And for the first. Couple of weeks until she reminded me to eat. I wasn't eating. I didn't here. I am, carrying a, an almost baked kid and I'm not even eating because I'm not even thinking about it. And so it was like some of the simplest things of you need to eat, you need to take a break and drink some water and those simple things in life that you wouldn't think you'd forget about that. In your grief, you're forgetting about. and so I think big picture. I wish and I wish I would have known, in supporting friends that have went through, a relationship, a loss of a, of a boyfriend, a loss of a parent, those type of things that I just had no idea how your whole identity is impacted by grief and how your life as a whole and everything you do, you're carrying that with you. There's just an undertone. That's always there. And I just felt like I looking back was not adequately supportive of those people because I didn't know what it was like. For me in those early days, doing instead of asking or saying, or giving options saying, hey, do you have laundry? I can help with or can I walk your dogs or, have you eaten dinner? I'd love to send you something, Those simple things. and then just, I think the biggest thing I struggle with is just my brother isn't physically here anymore, but just because he's not physically here does not mean that relationship didn't exist in my life. And that it isn't a part of what made me who I am. And so I just feel like it's what we talked about at the beginning. Just talk about him. Ask me about how I'm doing. Ask me about my brother. if you hear a song on the radio that for some reason sparks. I'm thinking of you, text me that.

Dr. Dean: 53:28

Mm-Hmm.

Katie Kuehn: 53:29

it's amazing just what those little nuggets, they can make such an impact, to know that someone's acknowledging that hole in your life still exists and it wasn't, they passed away, you figured out how to fill it and you've moved on, that is something that will remain and you're figuring out how to move forward in spite of it. and so for me, I think the one thing I would want people to know about sibling loss is regardless of if you have a sibling or you have a good relationship or a bad relationship, like they were there for so many landmark events in your life. first communion plays, The first time you thought your parents were going to get a divorce, my parents have been married almost 50 years and all of us went through a time where we're like, Oh, my God, I think mom and dad are getting divorced. There's all these different things- little things and big things that you experience together. And you assume that you're going to continue to experience those things together. And just. Acknowledging that's hard, that's not fair, that it's, just acknowledging that gap exists and not being afraid to ask about it, is what I wish I got more of.

Dr. Dean: 54:40

for sure.

Katie Kuehn: 54:41

One thing we haven't talked a ton about is, my relationship with my older sister, Kelly, throughout this process. Obviously, she is also grieving, the loss of what is her little brother and my big brother, and we're all grieving that hole in our family is, We moved through all of this and, we were close before, but we've continued to forge a bond, through our grief. and one of the things that her and I, as well as my sister in law, Sarah, honestly have had to navigate is, how do you support and walk alongside each other when you're all in the grieving process? and we have taken to a lot of times, We have a group chat on Snapchat, and a lot of times we've taken to texting and saying I'm putting something in, in Snapchat, don't listen unless you have the capacity, right? I need to get it out there, I need to share my grief moment about missing Josh, but if you're not in a place to receive it, you don't have to, and That's something I think is still a work in progress. I think it's really hard when both of us are, maybe riding the same grief wave. We're both, struggling at the same time, because you want to lean on. Your sibling, because that's what we've always done, right? Is you lean on your friends who, and I'm lucky enough that both of my siblings have been friends. And we have definitely had to navigate over the last year and a half, how to support each other in grief while also respecting where we are ourselves.

Dr. Dean: 56:07

Thank you for that. And we're going to hear from her later in the season

Katie Kuehn: 56:11

I'll be curious to know what she shares and, maybe what nuggets stick out to her and her grief journey and how we're similar and different.

Dr. Dean: 56:24

so it sounds like your current counselor, understands grief and loss in a way that your first one didn't. And so I'm grateful that you have that. and before we wrap up, is there anything else you wanted to share?

Katie Kuehn: 56:37

I guess I can give my, be an organ donation pitch at this point. one thing that has brought me joy and comfort in losing my brother is encouraging others to sign up to be organ donors. I actually was not signed up to be an organ donor, before this, Occurred, I felt like it was weird and I had a very skewed idea of what it meant and, what that process would look like. And, I am now obviously an organ donor. It brings me comfort in the idea that I could potentially be making an impact to others, by having people sign up by having people talk about what they would want if they were in that situation with their families and making that known. so that when it comes time for those difficult decisions to be made that your family knows what your wishes are. I guess that's going to be my plug on, and even if you can't donate your organs, for whatever reason, if you've had medical issues or whatever, you can still sign up and be a skin, tissue, bone, cornea donor. you can still make a huge impact. if you choose to do that.

Dr. Dean: 57:41

Thank you. I'll put links in the show notes about

Katie Kuehn: 57:44

that would

Dr. Dean: 57:44

organ donation. So I know you shared several already, but do you want to share some favorite memories that you had of you and Josh?

Katie Kuehn: 57:53

Yeah, the one that maybe speaks to, his love for, his little sister. when I was, I want to say I was in junior high, maybe early high school years, he in unbeknownst to me on multiple times to radio show contests to win, NSYNC tickets. and, we grew up in a smaller town in Iowa. And so we had to travel on the B 100 bus to the concert, 2 hours away. He's an adult taking his little sister on this B 100, bus with a bunch of other screaming girls. And, Took me to, one of my first concerts and we went and saw NSYNC together. And I don't know if he enjoyed it, but I very much did. And, that was such a cool experience. I felt very cool at that age to be able to go see him in NSYNC concert and, that my big brother was going to take me, it was pretty cool too. That's one thing, big love of music growing up. We listened a lot to like the Beatles, the Eagles, Meatloaf has always actually been one of the family favorites. And, I was very jealous because I was only eight and my parents took my older siblings to the concert and I wasn't allowed to go because he was apparently inappropriate. in concerts for an eight year old. But anyways, very much remember, all of our family weddings. my dad's side of the family is big Irish Catholic. we would always sing Paradise to the Dashboard Light, and my brother would do the boy part, and I would do the girl part. And it took me several years as an adult to actually realize what that song was about, and what, totally did not comprehend what that song was about growing up, but just lots of dancing and singing at weddings and, Memories of American Pie and some of those classics of us just singing together on the dance floor and, celebrating together, and then, getting to see, him meet my first son, getting to watch him be a parent to my nieces and to my nephew and, an uncle to my, my oldest nephew is 13. and he was the only for a really long time. And so my brother and I spoiled him quite a bit. And, yeah, it's just, there's too much to say at all. But, I just got a lot of. Time with him as much as I want more. and, even when I lived, out in D. C. and Indianapolis, he would come to visit me. One of my favorite things, I worked for the FBI, and when we were in Indianapolis, we had never One year I was working there, we had the Super Bowl come to town, and that is like a full blown, everybody is working, 24 7 type of thing. And I was working the overnight shifts, and my brother and sister in law came, because the Patriots were playing, which was our favorite team. And I would

Dr. Dean: 1:00:33

sorry to hear that.

Katie Kuehn: 1:00:34

Yeah, I know, right? I know. most people feel that way. I would come home after my overnight shift and kick them out of my bed in my one room apartment that they were sleeping in so that I could go to sleep. And then I'd wake up in the afternoon and we'd all go to the Super Bowl Village together and just do that. They came to D. C. and I'd take them, Around DC, my dad and my brother helped me move into my first apartment in DC. And we drove the, U Haul out and we stayed at the junkiest hotel because my dad doesn't believe in splurging for nice places halfway there. And then, yeah, I just, there's so many things that he was a part of all of, even when I was far away, he still made it a point to be a part of those big things.

Dr. Dean: 1:01:19

Fantastic. Thank you so much for this interview. I really enjoyed it.

Katie Kuehn: 1:01:23

I appreciate the platform to, share his memory and to just be able to talk open and freely about, the hard, but also being able to celebrate him and share his memory with you and with others. So, thank you.

Dr. Dean: 1:01:36

you're welcome. Thank you so much for listening. Our theme song was written by Joe Mylwood and Brian Dean, and was performed by Joe Mylwood. If you would like more information on the Broken Pack, go to our website, the broken pack.com. Be sure to sign up for our newsletter, Wild Grief, to learn about opportunities and receive exclusive information and grieving tips for subscribers. Information on that, our social media and on our guests can be found in the show notes wherever you get your podcasts. Please follow, subscribe, and share. Thanks again.