Audree Kropen - Founding SibsForever.org (Part 2)

[00:00:00] Maya: Welcome to the Surviving Siblings Podcast. I'm your host, Maya Roffler. As a surviving sibling myself, I knew that I wanted to share my story, my brother's story. I lost my brother to a homicide in November, 2016, and after going through this experience, I knew that I wanted to share my story and his story, and it's taken me quite some time to come to the mic to tell it, but I knew it was an important one to tell.

[00:00:38] Maya: So here I am to share his story and mine with you. And it's important that I tell the story of the surviving sibling, the forgotten mourn, the story that is not told enough. So thank you for coming with me on this journey, and now it's your turn to share your stories.

[00:01:03] Maya: Welcome back to the Surviving Siblings Podcast today. It is part two with Audree Kropen, the founder of sibsforever.org. Welcome back, Audree.

[00:01:15] Audree: No, thank you, Maya.

[00:01:17] Maya: Well, today on part two, we are going to tell the kind of second half of your story. We've already told the surviving sibling part of your story, so if you guys haven't listened to that part, go back and listen to Part one of Audree's incredible story as a surviving sibling and honoring her sister Robin and her passing many years.

[00:01:41] Maya: But today we're gonna tell your perspective as a grandmother who has gone through this and the loss of your daughter, Bree, who has lost her son Hayden, and the effect that's had on his twin, and how you have witnessed this and how it's brought so much up in you and also brought you to the point now as the founder of Sibsforever.org.

[00:02:08] Maya: So Audree, I'm gonna hand it over to you. Let's unpack this story.

[00:02:13] Audree: Okay? So, you know, it is one big story. So I'm just gonna kind of continue where I left off. So as I spoke about in the previous episode my older sister Robin, passed away when she was 14 and I was 12. And that single event changed who I was and the trajectory of my entire life.

[00:02:29] Audree: Her death was more than 50 years ago. And I still at times struggle with survivors guilt. I obviously set out to be very different from my mother who was completely dysfunctional and I set out to be different from her in every way. And I've succeeded in that. And I yearned to create a healthy family where I could be a loving and accepting mother very much.

[00:02:51] Audree: Unlike my mother. As I said before, I had you know, two children fairly young. I was in my twenties. My, my eldest was my daughter Brie, who I named after Robin. So her name is Brie Robin, and I had a second child, a son, and his name is Tyler, who was born 21 months after Robin. Well, he's special too, similar to Robin, but in very different ways.

[00:03:15] Audree: I'm not gonna say much about it out of obviously respect for his privacy. It's his story. But he was a special, he is a special child, and I really tried very hard to be the kind of mother that I wanted. You know, for me and for Robin and for Tyler and for Bree and into a large degree, I've succeeded.

[00:03:32] Audree: I'm very close to my children and they're a very huge part of my life. Brie Robin my eldest married after college and had twin children whom she named Brenna and Hayden. They were born in 2009. She was, I'm sure, impacted by my emphasis on having two children relatively close together. She had two children, really seconds apart, so very close together.

[00:03:53] Audree: I told her that I would help with the children if she, if she, if she moved nearby, didn't wanna be driving around town, but if she moved nearby, I told her I would help. I, I'm a techie. I had a very flexible schedule. I started working at home long before it became popular, and so I could help and do a lot of my work at night.

[00:04:10] Audree: And so she and her husband David, purchased a house three miles away. So I helped raise the twins, which allowed Brie to go back to work. And which she did part-time initially, and then full-time after that. So when she did return to work she dropped the kids off at my house. So I had them over almost every day.

[00:04:28] Audree: I helped raise them, including, you know, driving them to preschool, karate lessons, dance lessons, summer camp. They called me, they called me Mama Bear. They didn't call me grandma. They called me Mama Bear. Brenna, one of the twins had a little bit of a speech impediment or speech problem, wasn't able to say the hard sound, so she couldn't pronounce grandma.

[00:04:47] Audree: And so we needed to come up quickly with an alternate name, and one day where we were reading a Bernstein Bear's book and I said, Well, why don't you guys just call me Mama Bear? And that stuck. So I've been Mama Bear ever since and still am Mama Bear, which is a name that I love. So I saw them a lot, especially when they were younger.

[00:05:05] Audree: I saw them every day. And then as they got you know, into school and with, you know, extracurricular activities I saw them less, but each kid stayed over once a week. So therefore they got each one every week, had our, our attention, me and my husband. And then the one who wasn't with us got full attention, a hundred percent attention from their parents.

[00:05:23] Audree: And so they each had that that that a hundred percent twice a week. So as, as they got a little bit older I saw them less so I saw Hayden less, and so I didn't notice right away that something was wrong. Bree told me that he was much sleepier than usual. He'd come up from school and just close the door and take a nap, and she was worried about it.

[00:05:43] Audree: I had this irrational idea. I had it, I've had it my entire life since my sister died, that since I had already endured one tragedy. I just wouldn't be subject to another one. I was immune. It's the most ridiculous thing. Doesn't even make sense. But it, it, it brought me some comfort and I think I just always believed it.

[00:06:01] Audree: Now remember I got a degree in math, so I know that, that, that is ridiculous. So that, you know, every event is really independent from every other event unless it's, you know, like hereditary thing. So I know it made no sense. It was irrational, but I still believed it anyway, and it provided me some comfort and I really, I just didn't feel alarmed.

[00:06:19] Audree: Bree took Hayden to their pediatrician. He read some tests, some blood work, and said, ah, you know, just normal preteen stuff, which is kind of, you know, what I thought as well. So, you know, we went on, I kind of started noticing, you know, that there was some things that just were a little bit off. He had this like recurring shiver in his upper body.

[00:06:38] Audree: Like his head would shake a little bit. His eyes seemed not to quite focus, right. We decided to take him to the eye doctor. I think he, maybe he had a lazy eye or some kind of other eye condition. And once he went to the eye doctor and the doctor looked inside his eye, said to immediately over to the emergency room at Phoenix Children's Hospital for an MRI of his brain.

[00:06:56] Audree: This was the day before Thanksgiving and Hayden, he was 10 years old and he was diagnosed having a brain tumor. I went down to the hospital to see the MRI myself and here, kind of firsthand what the doctors were saying. He was admitted, had a brained biopsy, and the result of the biopsy combined with the MRI was just the absolute worst.

[00:07:21] Audree: Diagnosis that a kid could have or anybody could have. He had a grade for astrocytoma. It's very similar to the more common glioblastoma that people might have heard of. But it wasn't just like a mass, it was diffuse, meaning that it was dispersed with his normal brain cells covering half his brain, sort of like salt and pepper, just, you know, together.

[00:07:42] Audree: So we had normal brain cells and cancer brain cells all together mixed. So it couldn't be surgically removed and there really is no effective treatment. So it was the worst kind of tumor, fast growing, widely spread, inoperable, deadly. And I knew, you know, that it was just gonna be fatal, that we would do everything of course, that we could, but it just, there was just gonna be no path forward.

[00:08:11] Audree: So this was unbelievably devastating for me. I was gonna have to watch my daughter go through the same thing that my mother went through. It was unthinkable. And Bree, she didn't understand then that it was fatal. I mean, how could she understand that kids could beat cancer, right? And so this is one of those situations where you wanna hope, right?

[00:08:33] Audree: You have to hope. You can't, you can't give up hope, but you still know what you know. And so you have this mixture of hope and reality working together, and they have to coexist. It's very, very difficult. So I transitioned into this full Mama Bear mode. I was mama Bear. I wanted to protect everybody, and I wanted to do everything humanly possible for Hayden, for Brenna, for Bree, my daughter and her husband, David.

[00:09:05] Audree: So within a few weeks, Hayden was in a wheelchair. It, it progressed very quickly because it was already on half, over half of his brain by the time we actually went to the emergency room. And so it caused pressure in the, in, in his brain and caused the right side of his, of his whole body to be weakened enough where he couldn't even walk anymore.

[00:09:24] Audree: So it was in a wheelchair. And we started seeing an oncologist who said that he needed to start radiation therapy right away to try to shrink the tumor. That there was like nothing other than radiation that would work. So this is a six week regimen of radiation where we drove up to Mayo Clinic and he would get radiation, but of course it killed the good brain cells in addition to the cancer cells.

[00:09:46] Audree: And it's so toxic that this kind of therapy can't be repeated. So once the six weeks was over, you couldn't get radiation again, even if the tumor were to grow back, which we of course, knew that it would because there was no way to get all of it out. We just didn't know how soon it would grow back. So by the end of the six weeks of radiation, hated was different.

[00:10:08] Audree: You know, the radiation killed a lot of his good cells. He lost his ability to play, his ability to write. He was such a creative kid, you know, and wrote these great stories about sheep and farm animals and people. He was wise beyond his years, but he, he lost all of that, his above grade level math skills.

[00:10:28] Audree: He was very talented in math and maybe inherited some of that from me. A lot of that was, was gone, but he was able to walk again at least for a while. And there was one day that he was actually able to ride a bike, that he had enough balance that he could do that, but the next day he couldn't, couldn't do that again.

[00:10:45] Audree: So we were losing him little by little. We had no idea how much time we were gonna have, but I knew that it wasn't gonna be that much. But Hayden was a kid. He was 10. He never knew anybody with cancer. Never knew anybody. That passed away. He thought, you know, death was for old people. He would say, I'm a kid, I'm gonna get better.

[00:11:09] Audree: So, you know, it was, it was, it was a monumental task to try to figure out how to explain this to him and to Brenna, and to Bree, without making everybody scared and crazy. So it helped get his arms around it. I started reading books to him. I decided that the, the way to learn was, was through books and not, not books about cancer, not clinical books or anything, but books that had characters that were dealing with illness, disabilities, situations that were, that were, that were different on characters that had have strength to get, get past all this and to, to find their way.

[00:11:45] Audree: So Hayden followed along. I read out loud and then we'd discuss it. I would ask him questions and he would ask me questions. But the books, they weren't, they weren't sad or despairing or anything like that. They were stories like with, of loyalty and bravery and love in the face of challenge, which is what we needed him to be and what he was, he was, I mean, his just, his whole personality was, was, was so loving and he was always brave and, and really mature.

[00:12:14] Audree: Be honest, years.

[00:12:18] Maya: We hope you're enjoying this incredible episode of the Surviving Siblings Podcast. I'm your host, Maya Roffler. We'll be back in just a minute. After hearing from our incredible sponsor, sibling relationships are eternal. Our siblings are such an integral part of who we are. We don't move on when we lose a sibling, although we can eventually move forward.

[00:12:41] Maya: That is why it's essential as surviving sibling. To hold onto our sibling memories, stories and precious moments. Sibsforever.org was created to be your online memory book. It was designed and built by a surviving sibling for all surviving siblings everywhere. It is a secure and private platform for surviving siblings to chronicle memories through storytelling, pictures and videos.

[00:13:07] Maya: Sibsforever.org is a virtual platform for you, the surviving sibling to commemorate and honor your sibling relationship. Visit Sibsforever.org today to create your free profile and start building beautiful commemorative webpages, including photo and video galleries featuring you and your sibling.

[00:13:31] Audree: So the first book we read is probably the one that was the most impactful, was a book called The Honest Truth, and it's about a kid with brain cancer. Just had brain cancer for a long time. Just tired of being sick and not getting better. And he runs away. He leaves home, doesn't tell anybody, takes his cameras notebook, a backpack.

[00:13:50] Audree: And his dog, he had a dog he was very close with and ran away to get with the goal of, of climbing Mount Rainier. And during, you know, he had all kinds of you know, snowing and it all kinds of adventures and, and ultimately you know, did end up climbing. But during the book, we, we would talk about it.

[00:14:07] Audree: We would talk about, okay, he had cancer and he was frustrated, you know, what does that mean? But he had the love of his dog and he had the love of his family and he had the strength to basically make this trip. And then he had the strength to get back to his family. So, Hayden loved the reading. You could just see that he embraced it and, and, and he was able to kind of, you know, internalize it and apply it to his own situation. During his illness we read 18 books together. I actually listed the books you know, something that I listed so that we could build a library with those books for the, for the grammar school that he went to. So while we were doing this right after the radiation, really from the moment he was diagnosed, I realized that the only chance, and it was really no chance, but the only possible chance to make any progress or move the needle on this, was for him to enter a clinical trial because at least then there was gonna be something unknown.

[00:15:05] Audree: that maybe could work. Everything that was known, we know, didn't work. So I collected all of his medical artifacts, you know, his MRIs and blood work and everything that there was. And I made it readily available online. Since I'm a techie, I was able to do that and I was able to send links around to various clinical trials and doctors so they could, you know, look at his look at his pictures and look at his condition.

[00:15:30] Audree: I think I sent to about 30 different pediatric clinical trials, and there was only one that he actually qualified for just because of how advanced and how dispersed the brain tumor was. And that one was in New York City at Sloan Kettering. So we, we flew out there and it was a, it wasn't a, a medicinal trial.

[00:15:49] Audree: It was using a, a device called the Optune, which emits like little electrical signal signals into the brain that in some cases reduced or stopped cancer growth. And it was the only clinical trial. It wasn't necessarily one where the odds were very good, but, but it was something so you know, we, we did it, we spent a lot of time in New York and my brother was very, very helpful in, in getting us set up with places to live and getting transportation and gave us his car and everything.

[00:16:17] Audree: At Sloan, they they did their own MRIs and they had obviously different sub doctors, very good doctors, I, I might add. And they said that that he would benefit from having a brain surgery and having a clump of cells that, that were kind of together removed and it would reduce the brain pressure.

[00:16:33] Audree: So he actually had brain surgery and this was right before the pandemic, or right when the pandemic was first getting started and new, you know, as. It, it was very pronounced in New, in New York City at first, before it kind of traveled across the country. So he was having this brain surgery and we left New York just as the whole city was closing down.

[00:16:52] Audree: But we spent a lot of time there. We had to go back and forth cuz you have to go every, every four to six weeks for you know, for for follow ups. So while we were there and we spent you know, weeks in, in New York, we transitioned from paperback books to using the Kindle. And this way I could screen share using Zoom so that Brenna could join in.

[00:17:10] Audree: So I had books that I was reading to Hayden. I had a book that I was reading to Brenna over Zoom and I had a book that they were both reading together. So I would have three active books at Eddie One time after about three months, you know, Hayden started to decline again and it was clear that the clinical trial therapy just wasn't working.

[00:17:29] Audree: And, you know, it would've taken a miracle and, and, but you know, we had a try. It was one of those situations where you have to hope and try. , but you still, you know, you know what, you know. So one of the most excruciating moments that I do wanna share this, because you know, anybody that's in a situation where they're trying to help and protect a child who's in the process of losing a child will understand what this was like.

[00:17:55] Audree: So it was, as I was during the, the pandemic, so at the, at at Sloan, only one person from each family was allowed to go up. Masked, of course, at any one time. Sore was up there talking to the doctor. And I was called up to go up anyway, even though she was there. And I went into the room where she was talking to the doctor and she was lying face down on the floor and just refused to move.

[00:18:18] Audree: Just, you know, just lying with her face on the floor and just, she wouldn't move. So I, I picked her up and I put her on my lap and I rocked her just like I did when she was a baby. Really, really, really hard. She was my baby. She was suffering. So the, as I said, the clinical trial you know, wasn't successful and he was declining.

[00:18:41] Audree: So we kind of transitioned over to a palliative chemotherapy regimen. And what that means is, you know, it's not gonna get it better, but maybe you'll prolong his life and keep some of the symptoms at bay, which it didn't really do. I continued to look for clinical trials. I was like crazy in this clinical trial database.

[00:18:59] Audree: I continued to contact doctors and actually was able to get two clinical trials that were willing to consider him. But we didn't do it. We didn't wanna have to die away from home, and that seemed to be what likely would happen. By the time we actually got him enrolled and got moved out to the East coast for any one of these trials, we, we knew that he was, he was gonna pass.

[00:19:21] Audree: So the question was, you know, what, what could I do as his grandmother to prepare him in any way? So that he wouldn't be scared. That was the main thing. I didn't want him to be scared. I didn't want Brenna to be scared. But we were gonna watch him decline and we were gonna watch him die. It was, that was the reality.

[00:19:42] Audree: What, what could I do for Bree so that she could somehow leave the situation in some, at least in some kind of a whole healthy state. Hayden and I continued to read books together. We kept things as normal as possible. You know, I was over there and he, you know, he continued to come over every day and I assured him, cuz he always looked at me as kind of being, you know, the rock of the family.

[00:20:06] Audree: I was the older one, always kind of, you know, successful, you know, self-assured. I promised him that everything was gonna be okay. No matter what happened. Brenna was gonna be okay. She would find her way. I would absolutely make sure of it. And he really, really was worried about Brenna. He cared more about Brenna being okay than himself.

[00:20:29] Audree: He just, any time there was any kind of a, any kind of stress or any kind of squabble, like he would side with Brenna and just wanted really, really, really wanted Brenna to be okay. So I, I think he was relieved just knowing that, you know, that I was gonna, I was gonna ensure that I continued reading with Brenna.

[00:20:45] Audree: I still read to her today. We're currently reading Heidi, the original version.

[00:20:50] Maya: I love that because I'm Swiss. I love that so much. Oh my gosh. We are kindred spirits. I love this. I love this story so much, but I have to just pause this only for a second because I, I don't wanna stop your stories too much, but I wanna point this up because I hear a lot from twins.

[00:21:09] Maya: It's really impactful when a twin loses a twin. Like, and so hearing this story, I think is, and if you're a twin listening to this, you're probably going Yes, yes, yes. Like, I feel like I lost half of myself. That's why he was so worried about Brenna.

[00:21:30] Audree: Yeah. He, he was unbelievably worried about her. I mean, Yeah.

[00:21:34] Audree: Much more than he was worried about his parents. Wow. Because I think you're right, that, you know, there's a, there's a twin ship, there's a, you know, it's siblings, but it's, it's, it's, it's more than siblings, you know? And you know, they, they have sort of an unwritten communication, an unspoken communication.

[00:21:51] Audree: And, you know, everything that they do is, is connected to the other.

[00:21:56] Maya: A special bond, which is part of you. I mean, there's so many layers to your story. Audree, I so lovely. But I had to interject. I was like, Oh my gosh, you're reading Heidi. This is so beautiful. I love that. And I'm sure he's with you guys as you're reading those stories, but Wow.

[00:22:09] Audree: Oh, definitely, definitely. He is. So, you know, I continued reading you know, with Brenna. I shared my experience, you know, with Brenna about what it was like to lose Robin. And I assured her that her sibling relationship would go on forever and that we wouldn't stop talking about Hayden and we wouldn't stop loving Hayden.

[00:22:28] Audree: It would be different than me, like Hayden was gonna continue on. One thing I did make sure that Brenna did, you know, since she had time to do it and since Hayden's death was not sudden was to write him a letter and read it to him, where she could tell him in her own words how special he was to her and how much she loved him.

[00:22:47] Audree: I don't know that she would've done it without us kind of coaxing her into doing it because, you know, she's 10 and, you know mm-hmm. You know, maybe not something she would've done, but, but she did do it and. I just really, you know, I didn't get to do that with Robin. I obviously wish I could have said things that I didn't get a chance to say.

[00:23:07] Audree: So I, I really, really wanted her to have that, you know, that opportunity to do that. So I had this letter that she wrote. I I, I've kept it and I'll, I'll be able to give it to her, you know, when she's a little bit older. And I experienced, you know, I shared my experience as a surviving sibling with, with Bree and with Dave.

[00:23:22] Audree: You know, Brie obviously knew my mother. It was her, her grandmother. And she was very determined as most people not to be like her. Certainly in this way. And so she said right away, you know, I'm not having any more children, you know, but Bree is Bre, you know, she was a psych, she was a double major in college journal and psychology.

[00:23:40] Audree: So she understood the role of therapy and she has always been open to therapy and hearing what's best for Brenna. She's always been open to any ideas that I had. She believes in family counseling, so she embraced. All of that, not just for Brea, but for herself and for the family. So one thing Bree wanted to do, and I wanted to mention that this, just because it might be something that somebody out there that's in a similar situation never thought of, but it was such a beautiful thing.

[00:24:07] Audree: Bree wanted to get a tattoo of Hayden's heartbeat on her forearm, and when she came up with this idea, I know we didn't have a lot of time. So I did some research and I bought some components to assemble a recording stethoscope, so it had like a microphone and a recorder that you attached to the stethoscope with cables.

[00:24:24] Audree: And then I was able to use this homemade stethoscope to get a recording of Hayden's heartbeat and was able to convert it to a visual wave form. And she was able to take that wave form, that visual wave form to a tattoo artist who was able to inscribe it on her, on her forearm. So she has this beautiful tattoo of his heart of the his heartbeat on her arm.

[00:24:45] Audree: So, and she really does love it. So it is something you know, that maybe somebody else would you know, benefit from knowing how impactful that was for her. Hayden passed away. He was 11, so he, he made it shortly after to his 11th birthday, which is you know, which was July 31st. So he pass passed away August 18th 2021.

[00:25:05] Audree: And he left you know, left Brenna, his 11 year old twin sister as a surviving sibling just like I was all those years ago. Brenna was 11, I was 12, but very, very much of a similar age. Hayden was cremated, didn't have that open casket experience I had and I carry around a small necklace with with his ashes.

[00:25:25] Audree: You know, I don't have that with Robin, but I have the piano, I have the music with her, and I have I have a lot of. A lot of memories of Hayden, and I do carry around those ashes, but his death was so triggering for me. I mean, during his illness, I was so focused, a hundred percent focused on being there for Brenna and for Bre and for Dave.

[00:25:43] Audree: I didn't really spend any time thinking of myself, but after his passing, you know, all my guilt and kind of self hatred came back, It just came like flowing back like a hurricane. And, and I, you know, I felt like a failure. I felt like I not only failed Robin, but I also failed Hayden. I didn't notice early enough that something was wrong with him.

[00:26:06] Audree: You know, I trusted my instincts. I had this irrational thing that I wasn't gonna endure another tragedy. You know, I just felt like I was asleep at the wheel. I, I didn't, I wasn't there when I should have been. So it was very difficult. And but this time I knew I knew to get therapy and so I, I immediately got a, a reference for therapy and I'd been.

[00:26:28] Audree: Been been seeing somebody a counselor, Actually not the same one. I started seeing originally after Hayden's death, I found a different one from this class that I, I took that I really bonded with the instructor. So I've been seeing her ever since. So for any si surviving siblings out there, you know, therapy's fluid, you're not, is that like, it's a continuous thing that once you start, you know, you never stop.

[00:26:47] Audree: You can start and then things happen like this, things will trigger it. Then you, you know, you resume and then maybe you feel you don't need it as much. And so maybe you go every two weeks or every three weeks and maybe you stop for a while and then resume again. So you know, whatever the pace is or the pattern is that makes sense for you is the right pattern.

[00:27:04] Audree: I've stopped and started many times.

[00:27:07] Maya: Me too. That's great advice. I wish someone had given me that advice because sometimes I felt like I needed to go all the time or like when I was like, Oh, you know what I need. , I need to breathe a little bit. You know what I mean? Audree, I needed to breathe. I need a breath.

[00:27:24] Maya: Or like, or the opposite. I'm okay for a little bit, you know, and then I would get triggered, right? I needed to go back in for a little bit. So I really love that you're sharing that perspective, because I think it's really important for people to understand that this is a journey, and this is, I mean, for lack of a better way to compare it, a marathon.

[00:27:43] Maya: This is not a sprint. Like we're not going to therapy to go, Okay, let's go do a five hour session, we're gonna get over. This is not what this is about. Right? This is a ch a mental health checkin to get you, This is all about you in your journey. So I really love that you shared that because again, I wish I had that advice almost six years ago.

[00:28:02] Maya: I think it's really important, but this is really incredible what you're sharing. And Most stories make me feel emotional inside. I feel emotionally connected to them, but I'm getting very emotional listening to this because I can definitely understand why you were so triggered, but also so disconnected and so determined because I relate to you so much just as a person and, and you just who you are personality wise, because determination is like my middle name,

[00:28:33] Maya: So you're saying we have a similar personality. So when you're saying, you were like, I went all in, I was looking at all the studies and I was determined to help, I was determined to do this, and I w I relate to that aspect of this story. And, you know, the, the fact that this would be triggering, of course it would be you were almost exactly the same age as both Brenna and Hayden.

[00:28:58] Maya: So both sides for, for them, right. And. Wow. I mean, thank, again, thank you for sharing this and being so vulnerable, just as vulnerable as you were in, in your part one, and it's, you know, life is a journey and for you to be going through this and watching your, your daughter and now your grandchildren and to go through this, through so many different lenses, right?

[00:29:22] Maya: And watching this, it's, it's an intense thing. And I think I, I can't even imagine myself going through this as, as a grandmother years down the road. But, you know, never say never and never say can't because you know, what a difficult thing, and I'm so sorry for your loss, but Hayden, what a beautiful soul. Wow.

[00:29:47] Audree: Oh yeah. And, and definitely, yeah, think about therapy also. I mean, it, it's fluid in terms of, you know, how often you go and, and the starting and stop stopping. But the level of, of kind of, of understanding that you'll have about things will be different. Like, you know, I, even, even now going back, I have more understanding about why my parents were as dysfunctional as they were.

[00:30:09] Audree: I mean, I always understood and, you know, various times, you know, in therapy I, I gained more understanding, but even today I still am gaining more understanding, so I'm, you know, less angry. So even, even once you feel like you understand something, there might be another layer that you can even understand it further by you know, by having continued therapy, what, when you, when you know when it's appropriate, when you feel like you know that you're open for it.

[00:30:34] Maya: I think you just hit another like really pivotal thing about therapy. You said that you feel less angry and you understand more, and that's huge because when you go through, I mean, you've gone. Some really monumental things in your life. So those of you guys who are listening to this, like, you know, going to therapy, really it helps you, just like you were saying, Audree, it helps you understand, it helps you become a little more objective to these situations and, and you have these light bulb moments, like, Oh, and it helps you give forgiveness and so you could again, so you can move forward.

[00:31:13] Maya: That's really the theme of grief and loss. And it's not just when you are losing someone, you know, when they pass on. It's you, you kind of, when you don't get the parent that you need in life or when you don't get the, fill in the blank, whatever you need out of life, you have to forgive to move on in a lot of ways, right? Which is a whole other episode we could do Audree.

[00:31:33] Audree: Yes. It it's cause that, that, that's always a work in progress, right? You're never, It's a work in progress's, continuous work in progress to forgive. Yes. .

[00:31:43] Maya: But I love that advice because I think that's huge. And that is definitely the gift of therapy is to understand.

[00:31:49] Maya: Because to understand is to help you in this process of moving forward, because we never really move on. We just move forward. Because once we have the answers that we need, we can understand and therefore move forward. So yeah, I think that's important.

[00:32:05] Audree: Well, so let me talk about about about Sibsforever.org we've mentioned it a few times.

[00:32:11] Maya: We have to, we know you're the founder. We know you founded Sibsforever.org, but this was something that you were already working on as Hayden was on his journey Yes. To hopefully recovery. Unfortunately, that was not what happened. So talk to us about the birth of Sibsforever.org and of course we want all of you guys to check it out, but tell us all about it.

[00:32:34] Audree: So, shortly before Hayden's death, you know, I decided that I, I really wanted to honor him in some way. By keeping some aspect of him or my relationship with him, or his relationship with Brenna alive in some way. I wanted, I wanted, I wanted some meaning.

[00:32:48] Audree: And, and I think that's, you know, not unusual for, for people that are you know, experiencing grief and, and possible death. So, you know, I, I, I looked at myself and my, my, my talents. I'm a lifelong techie, so I wanted to use my talents to build something, some applications, some service, something like that.

[00:33:06] Audree: That would keep an aspect of, of, of Hayden alive. So what I did be the techie, I purchased domains for all my ideas. So I purchased Sibsforever.org with the idea that I would really focus on sibling relationships. As I said, you know, the sibling relationship doesn't die. It, you know, it, it carries on.

[00:33:26] Audree: And have it be a place. Where those kinds of memories and precious moments. And stories could be told other domains I bought just for, you know, a sidebar or patient artifacts.net because remember I took all of his artifacts and put them online and I thought I could productize that somehow and make that available to other kind people that, that needed that.

[00:33:46] Audree: I also purchased readingtogether.live you know, I thought maybe I would do something with reading out loud or reading, you know, in groups. But I've settled on Sibsforever.org cuz I felt not only could I honor Hayden, but I could also honor Robin. And at the same time. And so that really is the one that resonated with me.

[00:34:04] Audree: So I wanted it to be all about sibling relationships and to keep you know, keep them alive and to honor I honor and memorialize them. So for me, from Robin, I mean, she died back in 1967. I have drawers full of pictures. So I have some paintings, I have cards, I have autograph books, yearbooks. I've kept these things.

[00:34:25] Audree: I have all the piano music that I mentioned. I've kept these things for more than 55 years. These are things you know, that Robin and I did together. Things that documented us as sisters. I'd move them from place to place. And I've treasured them just as much today as when I initially carried them out of our childhood home when I was 17.

[00:34:45] Audree: So, obviously, you know, what am I, I can't, I can't like, you know, sort of. Put those things into a place where anybody could ever see them. But what I could do is I could, you know, create a site where you could write stories, you could upload pictures. In my case, obviously it's pictures of pictures. You could upload videos.

[00:35:04] Audree: I created some videos as, as examples. And so that's what, that, that's what I did. And it's all about sibling relationships. So the web service includes like a journal feature. So you can have diary entries there's a web blog, so you could chronicle things about the relationship. There's video and photo carousel.

[00:35:24] Audree: You could upload lots of pictures and, and videos, and you can configure it in different ways. You can keep everything very private. Or you could expose things and share share it with maybe friends or family members or other people that are on Sibsforever, which we call the Sibs Forever Community. So I use my own story as an example.

[00:35:42] Audree: So if you were to go out to Sibsforever.org and click on see example, then you would see the story of me and Robin. So there's a homepage, you know, it, it starts like we were sisters two and a half years apart in age. She was the older si, although we were just one school grade apart since Robin repeated kindergarten.

[00:36:02] Audree: We shared a room at first since we lived in a two bedroom garden apartment until apartment, until I was five years old. And we put up a homemade room divider as a way to claim our individual spaces. So as a homepage, I try to create the, you know, my, my memory of her. And then I was able to supplement that with pictures and some videos where I went through and showed you some of the artifacts.

[00:36:23] Audree: So I open that so that anybody who is a surviving sibling could go ahead and do that you know, create an account and honor their sibling relationship in a, in a similar way through words and stories, pictures. And videos. I have some some other planned features to connect to sites like legacy.com and ancestry.com and to do maybe a visual timeline.

[00:36:47] Audree: So you know, it's always a work in progress. I also have a second project in development that's gonna make it easier to find online resources like this. So, you know, I'm a techie, but I hadn't written code in a long time. You know, I was in management, I had leadership roles for, for many, many years. I did consulting.

[00:37:05] Audree: So you know, I had, hadn't really written any code. I never did any front end stuff. I'm, I'm not a visual person. I don't have any design skills or anything like that. So you know, it was challenging to sort of see, okay, can I, can I do something like this? Plus, I mean, I'm gonna be working all by myself in isolation.

[00:37:21] Audree: I'm gonna wear every possible hat, you know, qa, database, person, you know, but, you know, I was so motivated and so inspired by this and so committed. I just figured I'll just overcome all of that. So I took some online classes. You know, I picked some frameworks. I did end up having to hire a designer because, you know, you can't, if you don't have any, any color skills or any design skills, I don't think there's any classes that will help you with that.

[00:37:46] Audree: So I did hire a designer to help with the look and feel, but I wrote every single line of it myself. And I realized that I'm just as smart as I ever was when I was younger. Might have taken me a little bit longer, but you know, I was, my commitment and, and, and my skills, I was able to do it.

[00:38:03] Maya: Well, I'm, I'm proud of you Audree, and I am so thrilled that we have connected that the Surviving Siblings podcast, myself and Sibsforever.org and you, we are all connected and I think this is incredible what you're doing with Sibsforever.org I'm excited that I've started my profile and I think that it's just an interesting thing that you're doing because we're not. A box of pictures anymore, right? We're not that kind of society anymore. We're not all, So I really to, to wrap kind of, to give you my perspective on what you're doing. I think it's incredible because I'm like, I'm looking over here as we're chatting at a lot of the, the boxes I have of pictures and stuff, because yes, I'm, I'm born in 86.

[00:38:50] Maya: You know, my brother was born in 89, and so we still come from that generation. That was pictures, right? Polaroids, those kinds of things, you know, so some of you guys listening are probably like, Oh God, I was born in the nineties or two thousands where we're 19th century babies, so we're old to you. Sorry guys.

[00:39:06] Maya: We took real pictures back then. Okay. But what's so incredible about your site is you're giving the opportunity to upload all of this and it's all there. It's all there, which is incredible. It's all in one place, and it can be private. or if you're really that kind of person that wants to share it and have that connectivity with people like yourself, Audree, or of course me, cuz I've put it all out there.

[00:39:31] Maya: You're putting it all out there. That's what we wanna do in life. You can do that. Right? Or if you just wanna have a place that's connectivity between your family or if it's just for you. Yeah. If you want to just document everything for yourself. I think that was really eyeopening for me when you were first sharing it with me.

[00:39:50] Maya: I was like, wow, this can just be private. Because I think when you're first a surviving sibling and you know, people have different reactions, right? Some people really need that first connectivity. They wanna know they're not alone. Some people are really private, they just, you know, maybe need a place to put it all to get their head around what they're dealing with.

[00:40:09] Maya: So the options are incredible. But I'd love. That you can share and chronicle the story. I love that there's an option for community and it's just another place to understand again, that you're not alone, unfortunately. And fortunately, as I often say.

[00:40:31] Audree: And just the, you know, just the experience of writing the entries and doing it, it's, it's really very cathartic.

[00:40:35] Audree: It's very, it's very healthy to, you know, to do, just to go through it and to see it. You know, it's, it's a long term project. And I'm, you know, I'm obviously a hundred percent committed and I obviously have the patience and the, and the diligence and everything that, back in December, I, I saw a medium, and I know you mentioned that you saw a medium Yes.

[00:40:53] Audree: On, on your, on your podcast and a, a really wonderful medium. Not the one you went to, but just this wonderful, And she knew without me saying a word about this project, and she told me that it was gonna be a slow process, but. Ultimately be very successful. Maybe not, you know, maybe it would like be, it would grow in success until I'm like 70.

[00:41:12] Audree: She said that its success was written, was written in the stars. That's a quote. So I just, I I just love that. Another thing she said was that Robin and Hayden were growing up together, that the time between their lives on Earth didn't matter. And like you, my, I didn't say anything for the first half of the whole session.

[00:41:32] Audree: So, you know, her dis her discovery about, you know, Robin and Hayden was, I, I never said a word. So, you know, she really, whatever, you know, talent she has to, to get these kind of you know, communications or vibrations to under, you know, to be able to figure these things out is really quite impressive.

[00:41:49] Audree: But she, when she said that Robin and hating growing up together at the time between their lives, you know, on earth did it matter? It just, it, it. Just brought this really beautiful kind of picture in my mind of them, of them together. And it really I just love that. So you know, I've worked on Sibsforever for, for pretty much since you know, since since Hayden died.

[00:42:10] Audree: I stepped away from my consulting business and I, I actually had a, a plan to go back to it, but I'm not gonna go back and decided to focus exclusively on that. I can, and I really feel like, you know, that that's, that's where I should be. And, and that's, you know, that's my, that's my purpose.

[00:42:28] Maya: I think so too. And I, I appreciate you sharing your experience with a medium because not to shift too far off Sibsforever power, cuz I think this is integral in your story, but yeah, it took, as I shared, thank you for ringing stuff. As I shared on my podcast, I was so like guarded to go into a medium, Right.

[00:42:49] Maya: It took me a lot to go into that I didn't wanna share anything. I was like, I'm not telling anything. And then I was like quiet listening and all these things came around. I think that's incredible that the medium you went to, shared that. And I do, I'm so open minded with that kind of information out because that's so specific about Hayden and Robin and they were so close in age when they passed.

[00:43:14] Maya: Right. I like to say, I like to say passed over, but not everybody's open to that, but passed over is kind of my real term, but our terminology. But, so that doesn't surprise me actually, that they're kind of growing together and so, gosh, how beautiful. What a gift. Like, you know, And, but I do say this very often on the podcast, which, you know, cuz you've listened, but in, in this interviewing process as well, you know, you've gotta be, I always caution people on the other side.

[00:43:40] Maya: I'm like, it was a gift. But I also like, be very cautious. Do your research because yes, we both have beautiful experiences. So this is my disclaimer on this episode. Do your research because there's incredible people with gifts. Write Audree, but also, you know, do your research because there's a lot of people that also will, you know, you're vulnerable during this time, so make sure you do your research.

[00:44:03] Maya: That's my disclaimer. But I I know Sibsforever.org is going to be very successful because we are completely online, we're completely on apps. This is where we do everything. So why would our memories of our siblings and what we're going through as surviving siblings not live there as well?

[00:44:26] Audree: Definitely. You know, so and it's there for Brenna. I have that letter that she wrote to Hayden, that's something that she'll, you know, when she's ready that she'll upload. So just a little update on, on Brenna. She has a surviving sibling. She's had grief counseling and therapy, but she's a, you know, either two of them, you know, the twins, you know, she was always emotionally younger.

[00:44:44] Audree: Hayden was emotionally more mature. So you know, she, she really hasn't necessarily opened up yet, or, or she's just not really quite ready. But you know, certainly Hayden's talked about in their house and, you know, his, his things are still there and, and she you know, she. Has a relationship with him still.

[00:45:02] Audree: So when she's ready, you know, she'll embrace a therapy and Sibsforever.org will be there you know, for her and I'll be there to help her navigate the road to becoming healthy. The medium did assure me that she was gonna be fine and would have a very long life and ultimately would you know, take over and, and be an active part in Sibsforever and as part of her future.

[00:45:24] Maya: Why am I not surprised by that? Like, that's making me emotional. Like I'm getting emotional right now. You have made me emotional, Audree. Oh my God, , you made me so emotional during this. I am not surprised by that at all. And I think something that I'm just hearing throughout this, this part two, especially in part one, it started to come out, but in part two, especially of, of your journey and your story is breaking a cycle.

[00:45:51] Maya: Breaking a cycle, Audree, and, you know, Yes, you guys lost Hayden. And this is not something that we wish on anyone, right? To lose a sibling and now you know, a grandchild for you, but you broke a cycle. You know, you guys are doing things completely different than how your parents dealt with the loss of your sister Robin.

[00:46:18] Maya: Like you are honoring not only Robin, you're honoring Hayden and Brenna is gonna grow up remembering Hayden and honoring him for the rest of her life. And that's what makes me emotional. I'm like, it makes me happy because what, what 180 that.

[00:46:40] Audree: And, and I think I, I think that is really important, and I'm glad you pointed, pointed it out, you know, that, that we're not, that we're not, you know, just going to end up being like our parents.

[00:46:49] Audree: We, we can't be different. We can set out to be different. We can decide to be different and be different and create a much healthier environment. Even if you have, you know, all this challenge in loss, you could still you know, become the person and you know that, that you wanna be and that you were really you know, meant to be regardless of how you started out.

[00:47:12] Maya: Yeah. Well you've told that story, Audree. You've shown us that, like what a journey you've shown us in part one and now in part two, and I just think that's incredible and what an incredible legacy you're leaving for not only, you know, your do your beautiful daughter Brie, but. Brenna as she's going through such a difficult loss.

[00:47:32] Maya: Like I will never know what it's like to be an actual twin, even though my medium told me that my brother was my twin . Right. Interesting. You know, cuz my brother you know, it always felt that way. My mom always used to say odd things like he was just late. He was just late as your twin. And then when this medium told me that, it felt very weird.

[00:47:51] Maya: You know, when you hear these things your whole life. So it's interesting. But I think it's when you, when you're twins and you come into this world together, it's like a whole, that's a whole different experience that I'll never understand. But I'm sure those of you who are twins listening to this understand and going through that type of loss again, one of the reasons I felt it was so important that you told both parts of your story here today, Audree, but also to understand fully Sibsforever.org

[00:48:17] Maya: so before we wrap this up, I wanna go back to Sibsforever.org. and talk a little bit more about the tactical parts of it. So when we go to sign up, it's, it's free to sign up because you Sibsforever.org is a nonprofit organization.

[00:48:35] Audree: It's a nonprofit organization that, that, that I started. So it will always be free and it will always be secure. Remember, I'm a, I'm a techie. In fact, I was a chief information security officer for, for many years, so I understand privacy probably better than most people. That's incredible. So you should, you know, you should feel comfortable with it being completely secure and private. It's outside of social media.

[00:48:56] Audree: Right. I remember I told you, I wrote every line myself, so it's not, you know, it's not an adjunct of Facebook or, or Instagram or anything like that. It's really its own separate thing. So when you go out there, you would click on the create an account button on the top menu, and that would, will bring up a form where ask you same questions about your you and your s so it could create the account.

[00:49:15] Audree: And then after that, you know, you would. You would log in, you, after you create the account, you'll automatically be logged in. But other times when you come back to view or to add more content you would log in. You could log in using your Facebook credentials, or just log in using Google. Things that have, will feel very familiar to people.

[00:49:35] Audree: And then you know, you're, you're, you're inside and you have the ability to edit the site so you can edit the homepage add pictures or to picture gallery when you're in the picture gallery or video gallery mode. You can add, you can you can reorder things just by moving them around or delete things.

[00:49:51] Audree: You could add captions. And brings up a carousel. You can go into the journal, which is a diary, and you could add entries. You could edit your entries and you could add, you could put pictures and videos in any of the entries or the homepage. You could also add pictures or put videos in there as well.

[00:50:07] Audree: So they'll just be embedded at the page wherever you say they are. So you can have, so for me, so like I have I think nine public journal entries and maybe 10 private ones. Cuz some of the things, some of the things I write about don't want anybody else to see either, you know, it's my personal jo diary.

[00:50:22] Audree: So you could choose what you're going to allow people to see, or maybe you don't want anybody to see anything, which is also fine. And then there's a, a remembrance wall, which is like a weblog. So if you did wanna honor like a birthday or a, a death date, you know, things that obviously you know, every year I'm very conscious of.

[00:50:42] Audree: Both hated and Brenda's birthday and death date. So I might have some, some thoughts there that I would put down on the remembrance wall. And if I invited you know, like Bria Dave, which I have, and they might wanna put something down on that as well and we could comment. Everything is something you can comment on.

[00:50:58] Audree: If you expose yourself, your content to the Sips Forever community, then it's free for, you know, it's there for somebody to, to comment. So I can comment on an individual picture or on an individual entry or, or page. So if I'm moved by a picture that you post, I might wanna comment and tell you that I was moved and why I was moved by it.

[00:51:18] Audree: So you could there is a community button where you could see other, other relationships that have been configured so that you can see them. And so sometimes it's really. It's really healthy to see other people's stories and you can relate to things and, you know, feel some kindred spirit, some bond to people that are in similar you know, similar situations as yourself.

[00:51:40] Audree: And you know, I've, I, there's, if you need any help, you can always, of course, always reach out to me. I'm, I'm a hundred percent responsive to anything. So there's a support option on the main menu there once you're logged in. So there's a faq, so I try to answer some questions that have come up, and then there's a contact and that goes directly to me.

[00:51:58] Audree: So I will respond if there's any questions or problems or any ideas or any, anything else you wanna say about it. I'm definitely open for any and any and all feedback. So this has been, this project has been very, very good for me. I mean, I've been able to really, you know, kind of spend my time feeling.

[00:52:19] Audree: Like, you know, it, it, it's been beneficial for both my relationship to Brenna and Hayden and Robin and the relationships with each other and to be able to give to the community of surviving siblings something that hopefully will be meaningful to other people and similar situations to us. Maya.

[00:52:38] Maya: Absolutely. You are just getting started with this. Audree, thank you for that recap. That's exactly what I wanted everyone to hear is how to utilize it, kind of the tactical information behind it. And I love that you shared that there's also kind of the nitty gritty behind the scenes, like you can share a little bit and you can keep some private too.

[00:52:57] Maya: So wanted to highlight that, and you just took it away and explained it beautifully. That's perfect. And now they know that you're really the woman behind the scenes. So Definitely. I, You get a lot of emails, so you kind of put yourself out there, Audree, but that's cool.

[00:53:09] Audree: That's all good. But, but I want, I mean, I wanna spread the word.

[00:53:13] Audree: I wanna help anybody that, that needs any.

[00:53:15] Maya: We are the same. We are just the same in that way. I know we put ourselves out there. I love that because I think there's something about this community, right? It's a, a big small community at the same time. It's much bigger than we realize, right? So there's a lot of passion behind it because, you know, this is, you've, you've gone through a whole other journey and I just commend you so much for coming on here and being so vulnerable and I just appreciate you and thank you for creating Sibsforever.org

[00:53:42] Maya: so before we go and end part two, I don't wanna end, I wanna do another one with you, Audree, but we will I wanna hear a last piece of advice about your perspective as a grandmother, cuz on part two we ended, I'm sorry, on part one we ended with your surviving sibling advice, but your perspective as a grandmother watching your daughter and then also watching, you know, your Your daughter and then watching your granddaughter go through this, like, and then obviously losing your grandson, this was a whole different perspective.

[00:54:14] Maya: So what advice would you give as a grandparent?

[00:54:17] Audree: So as a grandparent, you're in, you're in kind of an interesting role. You know what you, what you wanna do is you wanna support your, your children, right? I, but you know, they need to find their way and you need to let them find their way. And you just need to be there so that you can kind of maybe, maybe, maybe point them in a direction that they haven't thought of or offer an alternative that maybe they haven't thought of.

[00:54:42] Audree: Not necessarily even giving advice, but just, you know, giving them food for thought, sharing your experience so they can incorporate that into making their own decisions you know, if they need resources, being able to provide those resources. Maybe, you know, sharing what therapists I use that they might wanna use, you know, that kind of thing.

[00:54:59] Audree: So, You know, you, you wanna kind of be there like, you know, steering the ship, but it's their ship. Okay? And they, they have to be free to go in the direction that they go. And you're, you know, I wanna support them and help in any way I can to, you know, to make it easier for them or to you know, to just to be there so that they can lean on me and they can rely on me, which they do, believe me so I, I think you know that, that that's the role. Cause you're not, you're not front and center, right? You're, you're, you're behind, but you're a big presence behind the scenes.

[00:55:36] Maya: Beautiful advice. And you're beautiful person. Audree, thank you so much for all of your just knowledge, advice, and. Just both of your stories as a surviving sibling and I'm just gonna call you a surviving grandmother because we don't have a term for this yet, so we'll make one up today.

[00:55:53] Maya: So, okay. We want everybody to visit Sibsforever.org it's kind of explainable self-explanatory, right where to go. But any other driving places we wanna drive them to, to visit you, subscribe.org. Anything else you wanna mention?

[00:56:09] Audree: So, you know, it's easy to find me cuz I'm on contact, but you know, when you see, when there's a you know, a button there for seeing example, that's my story.

[00:56:18] Audree: Okay. And I think it's a really good example of what you could do. Would I have, and I have like, like May because you were very inspirational in being so authentic and so transparent in your, your podcast. You know, I was similar in, in, in putting my story out there, you know, It's all there. And I, I feel really good about that.

[00:56:35] Audree: I, I feel good about you know, it took me a really long time to know who I was, but now that I know who I am, I, I, this is, this is me and I want, I want everybody to know that and I'm, I'm perfectly comfortable with the, the person that I am. So I wanna be able to help anybody that I can. So please reach out to me if I can help in some way.

[00:56:51] Audree: I, you know, get you going on Sibsforever.org or if you have any questions or just really anything

[00:56:57] Maya: beautiful, and they can contact you just directly through the website and we'll put your information, the contact right into our show notes as well. That's good for you, right, Audree?

[00:57:05] Audree: Absolutely. So it's Audree@sibsforever.org, so it's, it's real easy.

[00:57:09] Maya: Perfect. Well, thank you so much for joining us for part two, Audree.

[00:57:13] Audree: Thank you Maya. I really enjoyed being here and thanks for the opportunity and welcoming me here. It was a really important to

[00:57:19] Maya: me. Yes, this was incredible. And make sure you guys visit Sibsforever.org it's been incredible. I've signed up.

[00:57:28] Maya: It's incredible. Make sure you guys check out the video, just like Audree mentioned. It's really an, a peak inside this entire journey for her. And you see all of the beautiful pictures of her and Robin. It's just, it's beautiful. So thank you again, Audree, for being here. Thank you so much for listening to the Surviving Siblings Podcast.

[00:57:46] Maya: If you enjoyed this episode as much as I did creating it for you, then share it on your chosen social media platform. And don't forget to tag us at Surviving Siblings Podcast so that more surviving siblings can find. Remember to rate, review, and subscribe to the podcast. And don't forget to follow us on all social media platforms.

[00:58:10] Maya: We're on Instagram, Twitter, and TikTok at Surviving Siblings Podcast. All links can be found in the show notes, so be sure to check those out too. Thank you again for the support. Until the next episode, keep on surviving my surviving siblings.