← A Place of Yes | A Grief Podcast 
Loading summary
Transcript173 lines
- [00:00]
A
Hi, I'm Heather Straughter, and this is a place of yes. In each episode, we have honest conversations about grief. The messy parts, the unexpected moments, and the ways we begin to heal through heartfelt stories and expert advice. My hope is to offer you comfort, connection, and a reminder that you don't have to navigate this alone. Today I'm joined by Elizabeth Klug, a mother, wife, and realtor whose story holds both profound heartbreak and deep resilience. Elizabeth and her husband are BRCA tooth gene carriers, and they lost two of their four children to a rare genetic condition called fanconia anemia. In this conversation, Elizabeth opens up about what it means to parent through grief, how her marriage survived unimaginable strain, and why she still proudly says she's a mom of four. We talk about anger, guilt, advocacy, and the weight of knowing what most people try not to imagine. She also shares how her daughter Ruby, is navigating life as the sibling who remembers in how their youngest, Cohen, has brought light back into their home. It's raw, generous, and full of truth, and I'm grateful to share it with you. Today I am here with Elizabeth Klug. She is a mother, a wife, a realtor, and like so many of the guests, a fellow griever. She lives in Wisconsin and we were introduced by a season two guest of the show, Ashley Schneider, who thought that she'd be a great fit. And I have to say, sometimes I get recommendations and I talk to them and the connection isn't there. When Liz and I started talking, having never met, having never even knew each other existed, I felt like I found a friend. I feel like we are two people who have loss but have made the very conscious decision to live our lives a certain way and to live alongside that loss. So, Liz, welcome to the show.
- [01:52]
B
Thank you, Heather. So glad to be here.
- [01:56]
A
Before we get into. Into it all, I wanted to start with our, you know, season three question of something you said yes to recently. And it's always funny because when I first started, I thought it was easy. And now that I answer the question myself, it stumps me. Sometimes I never quite know what I'm going to say. And today I'm going to say that for me, sometimes and definitely recently, what I've been saying yes to are really small things because sometimes the. It just feels heavier, right? Like living with the loss, living with the way people around us know our loss. And I just had the 15 year anniversary that my son Jake died and. And everybody knows that date. And I want people to know that date, I want people to remember him, to remember he was here. But it's also hard, right? Like, it's just a hard time. So sometimes my yes is making the decision to just get out of bed and have my day. To be a mom to Ethan, to be a wife to Brian, to, I don't know, make myself happy, to just do what I need to do to get through it. So sometimes the yeses are not these big, like yeses to lunches or dinners or jobs or anything exciting. Sometimes it's just a yes to keep going. So that's my guess. What about you?
- [03:22]
B
No, I couldn't, I could not agree more. I was going to be cliche and just say that I said yes to this podcast. Yay. I love it. I actually thought a little bit more thoroughly. And this past Saturday, as I mentioned, being in Wisconsin, it's bitterly cold here. It was minus 30 with the wind chill. On Saturday, it was brutally cold. And I was invited to a Christmas party where there was a dress code. And it was in downtown Milwaukee. And I had told my mom about it. And she being a widow, she says yes to every opportunity. She really embraces that because, you know, you never know when your time is up here. And so she really wanted to go. And I was hemming and hawing and I just didn't want to get out of my pajamas and put a dress on. It's so hard sometimes. It's so hard. And then children, well attired children could, could come. And so I told my daughter Ruby about it and Ruby instantly said yes. And she wanted to dress up too. And I was thinking, well, I can't be the humbug, you know. And so I said yes. And we made the trip out and it turned out to be a wonderful evening. And I was able to spend time with two very important young ladies in my life. And I was grateful for that moment.
- [04:49]
A
Yeah, it is funny because sometimes the best yeses, for lack of a better way of saying it, are the ones that you don't want to say yes to immediately. Oh my gosh. Yeah, I definitely try to because I like my go to, especially as I get older, is kind of. I don't want to say it's no, but I'm like, I like before the words come out of my mouth, in my head, like in the craziness of my own head, I'm like, it's too cold, I'm too busy. It's too like, I have every excuse, totally. But then just doing stuff is, I don't know. It's important. It's important to get out.
- [05:25]
B
It's always.
- [05:26]
A
I don't want to say always, but it's mostly worth the effort to do it because there really is all the time in the world to stay in your pajamas on the couch.
- [05:36]
B
I fight that all the time.
- [05:37]
A
I fight it constantly. Especially when it's negative degrees out.
- [05:40]
B
Yes.
- [05:41]
A
But so good for you. Good for doing it. And I. It's a friendly reminder to anybody listening to sometimes, sometimes pajamas are important, but sometimes getting out of them is good too.
- [05:53]
B
Yes, we can do it.
- [05:56]
A
So I'm hoping before, like, we get into the questions, if you could give, and this is kind of a loaded question because if you could give like a snapshot of your family and what you've been through. There's a lot of things I want to hit, but I think like a good background for the audience, kind of a quick overview would be great. So if you don't mind.
- [06:15]
B
Sure. Well, I am married to my husband Dan, and we are the parents of four beautiful children. And two of them unfortunately have departed due to a life threatening genetic disease from my underlying BRCA2 gene mutation. So I am a BRCA2 gene carrier, mutated carrier, and unfortunately my husband is too. And even though we did all of our due diligence with, prior to conceiving children, it didn't work out in our favor. And so we have experienced loss and we've experienced life and with the birth of two miraculous children, one through natural conception and the other one through ivf, through our own control. But we've been married, oh my goodness, 13 years roughly. So on the fact that statistically speaking, typically, I think it's 90% of parents that experience the loss of one child will divorce. And trust me, we are not in a perfect marriage sometimes.
- [07:29]
A
Is anybody?
- [07:30]
B
No, no. He and I have both equally thrown around the word, the D word before in the past, but we've been able to get through it. How? I don't know. I don't know.
- [07:41]
A
But.
- [07:44]
B
We both know that we're better together and here we are. And he works and I work and we're just trying to raise two wonderful kids that hopefully, I cannot stress this enough, hopefully recognize that life is so fleeting and that they should be living not just for themselves or for, for me and my husband, but for their sisters that are no longer with us.
- [08:13]
A
You know, you touched on so many things and this wasn't even where I wanted to start, but I, I feel like I have to, um. You know, I never know what that Percentage is right of marriage. Yeah. And I could be wrong, you know, that survive. No, but it's high. It's like I never. And I always throw out a number and it's usually like 85, 95. I don't, like, I don't know what it is, but I can tell you that most. Like, it's not often that there's people like us talking to each other that are married. Right. Like, it's just impossibly hard. And sometimes even during the illness, like, forget about the loss, like just in that stage. And it's so hard. And like you said, no marriage is perfect. Mine certainly isn't. And I just want to share a little story because it's very. It kind of touches on everything you said. So last week there was a fundraiser for our organization, Jake's Help from Heaven. And unbeknownst to most people, my husband and I were like, not a great place. We were like, it was, it was the, you know, the anniversary, 15 year anniversary. We're both in our own heads. Like, you kind of want things to be perfect, but, you know, you're just. You annoy the shit out of each other, frankly. And we had like a 24 hour period where we were barely speaking. Meanwhile, here we're supposed to go put on a happy face, talk about Jake, like, see all these people, you know, do it, like, just be great. And we were barely speaking at the same time. A young girl who we work with through the organization, Family, that I knew very well, we've worked with since like 2016, the little girl passed away. And so all that is kind of happening at the same time. It just feels really heavy and whatever. So all of a sudden I'm like, we gotta get it together. We gotta go. And he said to me, he's like, yes. You know, So I said, I'm sorry. He said, I'm sorry. Life went on. But then he said, it's a big day. And I remember just thinking, and I said this, I said, every day is a big day because you never know when it's gonna end. And we know that so personally, like, we know that in our bones, right? Like, and not. It's so. It's such a cliche to say, but people don't really know that. But I do think when you know, it is as deeply as we do, that it does impact the way we live. And I just, it's just, it's just, it's something we live with all the time. And I love that you kind of like, I want Ethan, my other son to know that. And I get that you want your, your girls because it's just.
- [10:42]
B
Yeah.
- [10:42]
A
You watch people take life for granted and I, I feel like it infuriates me more than it should, but it just does. You know, we know inherently in our bones what it's like to live with loss. And it's so frustrating, at least for me, when other people don't. But one of the things. And I, I think we'll go right into this, you know, because I, I, with my story, you know, and, and Brian and I have a great marriage. I really do. Like, all of the things. Right. Like, and I think we talked about this in our introduction call. Right. Like, there are so many times I want to like, kill my husband. Very few of it. Does it have to do with our losses? It has to do with just being a married couple. We've been married 21 years. It's a long time, you know, some of the day to day. But I want to talk a little bit about the fact that you are both carriers.
- [11:35]
B
Yeah.
- [11:36]
A
And what that feels like. Like knowing that you guys passed on these genes. Like, how. And I don't mean to say that in any way. Like, I'm trying to be really careful with my words. Don't be careful.
- [11:52]
B
You could say it.
- [11:54]
A
No, but like, I don't want it to feel like there, you know, I mean, I don't want. Because I know what that feels like when people are like, well, why did that happen to Jake? What's wrong with Jake? You know, they're your kids, so you just, they're, you just want to protect them, but you also, they're your kids, so you feel responsible.
- [12:11]
B
Absolutely. Absolutely.
- [12:13]
A
So how do you guys navigate that? How do you personally. And then as a couple, knowing that, I mean, is it better that you both contributed to it or is it.
- [12:20]
B
I don't know, I think I'd rather just beat myself up versus, like trying to blame Dan when he, he has 50, 50 stake in it, just like me. I think what's so bitterly frustrating about what we've experienced, and I told you this when we first met, is that my husband graduated from college with a medical laboratory science degree. So he, he tests genes all the time. And this is his forte, this is what he knows. And when I got tested, so my father, after he passed away, is when I finally went in to get tested to see if I was a BRCA2 gene carrier. I apologize. My father died at the age of 58 from breast cancer and he had a two year battle and the doctors could not figure out which. Where the cancer was originating from. And by the time they figured it out, it was too late. It had spread to his organs. He was. His death sentence was established. And so we celebrated my father and we. He passed away in our home with all of us with him. And I think a few months after I got tested and what do you know when you have parents that are gene carrier mutated gene carriers. Forgive me, most likely offspring will have a 50% chance of getting it. And I have it. My brother, thank God, doesn't have it. So I'm the only one that we have to worry about. And after my husband found out that I am a carrier, and I would most likely experienced the same fate as my father, he did his due diligence as well because he knew his mother had breast cancer. And oh my goodness, if she is a carrier, there could be so many effects to our children. And he knew that before we decided to conceive. And like I said before, he wrote an email to his mother, I was copied on it and he said, mom, I need you to go get tested because if you are a carrier, we. We could both and. And therefore he's a carrier. Then we could both conceive children with fanconi anemia, double BRCA2 gene mutation. She did not test positive for the gene mutation. And therefore we thought we had the green light to just have sex whenever we wanted and. Sorry for being so. No, no.
- [14:59]
A
This is why I love this.
- [14:59]
B
Okay, good.
- [15:00]
A
I mean, I love this conversation.
- [15:03]
B
We're married.
- [15:04]
A
I mean, it's real.
- [15:05]
B
Yeah. Like who? Nobody thinks about, like you. You fall in love and you get married and you don't think about, oh, do we have mutated genes before we decide having kids? Nobody thinks about that.
- [15:17]
A
Nobody does.
- [15:18]
B
And the fact that my husband thought about that to me was so absurd. And, and so we. We conceived Mirba. She was born without any physical deformities. The only. The only underlying condition, if we even knew what to look for, was just her size. She was really tiny. I think she was like 5 pounds, 15 ounces. And I carried her full term. I still.
- [15:44]
A
But even that, like some kids are just tiny, you know what I mean?
- [15:48]
B
Like, it still hurt to push her out. Let's be honest here. She wasn't that big.
- [15:53]
A
Jake was eight pounds.
- [15:54]
B
Oh my gosh. Oh my goodness. I could. Well, I've never, in all honesty, four times. I haven't had a eight pound baby. I've only had seven pounders. So anyway, congratulations to you. You're a stronger woman than I am. You've done it four times. There we go. So we have Mirabel and. And then we had Ruby. They're 18 months apart. And Ruby came out more average. If you say. I hate using the N word. The normal. Normal stats. But anyway, so it wasn't until. And I should send you the picture. I cringe every time I see it. Because it was after Mirabel turned two. She had a two year appointment where the doctor said she was fine. You could see her stomach starting to bulge out and it. And when my husband touched her tummy and realized how firm it was, he. He knew something was wrong. And then we went to the doctor. Of course we were sent to Children's. What do you know? We find out it's a tumor. We thought it was highly curable, but they did genetic testing and then come to find out she has Fanconi anemia. And my husband wasn't in the room for that diagnosis, only I was. But he was on the phone with the oncologist. And he educated me after that appointment about what was to come with our children, with. With Mirabel at that time, because we only had two. But what could possibly happen with Ruby if she wasn't tested? So I guess, long story short. Or at least this, to answer your question, throughout the time of Mirabel's treatment, knowing that my husband was a carrier, knowing that he did what he could and he still. It's not him. We still failed. I was so mad and angry and bitter and resentful and I didn't love him anymore. And I wanted out. And like, I wanted to, you know, wave the white flag and just start over, but that's not. You can't do that.
- [18:19]
A
And you can't stay in that space forever anyways. Like, you just can't.
- [18:22]
B
Exactly. Exactly. So, I mean, and. And again, we can bounce all over the place. Obviously. While Mirabel was receiving treatment, I decided after so many doctors were telling me, you should get a mammogram. What? I find out I have breast cancer. So we're. I'm getting treatment. My daughter's getting treatment. My husband's still okay. He does his due diligence with his doctor annually to check markers and make sure there's no nothing going on. We've had more scares with me. I guess he and I both try to do what we can to prevent the inevitable. I'm trying to live patience past 58. That's my goal. My dad died at 58.
- [19:11]
A
It's hard when you have like a Number Right. Like, it's hard when you have. Because it's almost like it. I don't know, it feels like there's a sentence. Like, it feels. And you just want to get past that. And that's. I think that's got to be really hard. I. You know, I. I think your story is so. You know, it's so many things, right? Like, I just think about how careful. You know what I mean? Like, like we said earlier, most people do not go into their marriages thinking about any of the things that you guys thought about, right? Do you know what I mean? Like, it's just not typical thought process. And I just. I would be. And this is. You must hear this all the time. And sometimes I try to be really careful. Cause I'm like, I say things that if people said to me, I'd wanna smack em. But then I hear them coming out of my mouth, so I'm like, well, what am I gonna do? But, like, I just feel like I'd be so mad. And I think the fact. You know, and you said it. You were so mad and you kind of hate him. And I think that is so real. And I can totally imagine that. I also think about what you said when you said, you know, you kind of wish it was just you. And I know that feeling. And I've talked about it because, like, when Jake did die, it was on my watch, right? Like, he was with me. And I have always said, and I will say it until I die, that I am so grateful for that, because the only blame, and not that there was blame or whatever, but it was on my watch. And I don't think I could ever forgive anybody else. Like, if it was my husband, a sitter, my parents, like, I could not get over it. And maybe I could. You know what I mean? Like. Like, maybe I could. But I just still, all these years later, am grateful that I'm the only one that that was on my watch. And so I get that feeling of saying, like, you know, you kind of wish it was just your genes, because then it's just an internal struggle as opposed to, like a coexistence.
- [21:20]
B
Correct. Now I have to share this pain with him. I don't want to do that.
- [21:25]
A
Well, no, because it's like you kind of are like, this is. I don't know.
- [21:28]
B
It's.
- [21:28]
A
It's. The blame is.
- [21:30]
B
It's easier to blame yourself or carry the burden yourself or I would rather. And now it's. It's mutual.
- [21:40]
A
So.
- [21:40]
B
And. And we went into the marriage not like he knew what he was getting into. He knew who he was going to marry. And he still married me. So here we are.
- [21:51]
A
So you. You end up with. You know. So Mirabel's about two.
- [21:57]
B
Yes.
- [21:58]
A
When you start to recognize that. That you're not out of the woods. That in fact there is something. And Ruby was already born.
- [22:05]
B
Yes. So Ruby was a year and a half. She was 18 months when. Okay, Mirabel. We found out about Mirabel. So.
- [22:15]
A
So how. And I know you can't speak for her, so this is just a weird question, but I've been thinking since we spoke, I've been thinking about her so much because she is. Was in between the two children you lost.
- [22:29]
B
Yeah.
- [22:29]
A
And she was naturally conceived, but just the way genetics and genes are weird.
- [22:37]
B
What has.
- [22:38]
A
Nothing.
- [22:38]
B
She is correct. Yes. She's a miracle. A miracle child.
- [22:42]
A
And. And that is amazing because it's your daughter and, and it's awesome.
- [22:49]
B
Yes.
- [22:49]
A
But there's gotta be something for her. And maybe, you know, and I always say that we always can put these feelings on other people, but other people only know what they know. So this is her life. Right. Like maybe she doesn't have that. Like she doesn't know any different. Like she's just knows it. But how does she. How does she. Like. Like how does she go about her day? Like when she's 11. 10.
- [23:14]
B
She's 10. How old is she? She's 10.
- [23:15]
A
She's 10.
- [23:16]
B
Yes.
- [23:16]
A
So how does it impact her?
- [23:19]
B
I know that if at all. Sure. No, she. The older she gets, the less she remembers.
- [23:27]
A
Right.
- [23:28]
B
So we show her pictures and show her movies and video. I think that's painful. Just naturally for her. Yeah. And when, when things aren't going her way and she knows that she has two siblings that aren't here. How sad she can be. Because she just wishes it could be different. As do I. I know that she embraces her brother. They're seven years apart. She embraces her brother as if not just a big sister, not just a friend, but that motherly component. She's very. She dotes on him, if I said that correctly.
- [24:14]
A
No, no, no, Totally. Yeah.
- [24:18]
B
And what's really peculiar about it is that she's a second born child that kind of was pushed into this firstborn position. And I see some traits that she's adopted as a firstborn, but then I definitely see the second born child in her. But I mean she was there for both of their deaths. So the, the girls both passed away in our home. We didn't want them to die. In the hospital. Hospital, so. And even though she was so young, I'm. She'll never forget them, Cohen. My son won't. Doesn't know them.
- [25:00]
A
He didn't know them.
- [25:01]
B
Yeah, he's. He sees pictures of Mirabel and he says, oh, that's me. And he. I. I kid you not, he is a spinning image of Mirabel and Lilu. He looks just like him. And it's sweet when he says those things. And then when he has traits that come through, his personality traits are like them. That's just crazy to me. But I think I won't know how Ruby will do until she's an adult. Is that so weird to say?
- [25:34]
A
No? Well, I will tell you this. You know, so Ethan And Jake were 15 months apart, and Ethan, you know, was five. He was in kindergarten. And Jake's death was unexpected. You know, he was. He had a ton of medical challenges, but it was not. There was no death sentence. There was no diagnosis. So there was no real. Like, we didn't know it was happening. Like, I had no idea. Like, I didn't. I woke up that morning, and I say this all the time. It was just a regular Wednesday. It was just a day. And it was just a day for Ethan, too, right? Like, and he. As he got older, like, when he was right after it happened, he was very. It was kind of. I don't say cool, but it was kind of cool because he was so still, so young, that he was kind of, like, in touch with some of his. Like, he'd be like, hey, Ma, Jake's right there. You know, I'd be like, oh, where? And he'd be like, point to the ceiling. And I'd be like, oh, hey, Jake. You know, like. But he was not. He wasn't afraid to say anything because he didn't know that what he was saying was kind of odd or, like, whatever. He just. He believed his brother was right there, and he would. He would. You know, it was just that age of just not being embarrassed of things. And then he went through all the ages. And similar to what you said, which made me think of all this, was I. Even now, at 20 years old, he's gonna be 21 next month. He doesn't have. I think he has memories that are really stories we've told or pictures he's looked at repeatedly. But I don't know how much he truly remembers. Do you know what I mean? Like, and, I mean, he wrote his college essay on being the one that had to call 911. So, like, there's Definitely things that, you know, there's a lot to unpack. And in that college essay, there were things that I was like, oh, wow. Like, I didn't. I guess I, you know, I. I never. I didn't know.
- [27:31]
B
Right.
- [27:31]
A
So you never know what they're going to keep with them or not keep with them, but they do, in my opinion. And I think you will see this with Ruby. I think there is an element of just maturity and that doesn't, you know, at 16, you're gonna be like, no, there's no maturity here at all.
- [27:49]
B
I don't think there's maturity right now. And there are a lot of people that think she's very mature for her age, but.
- [27:56]
A
But there is this maybe maturity, but like, compassion or there's just this, you know, their life experience is. And that's why I always be careful to say, like, it's just all they know also. So there's not this, like, oh, my God, you're a perfect child. But there is this piece of, like, just. I don't know. I do think that Ithan carries himself through the world and now that he is a young adult, there's pieces of it that I'm so proud of. And I don't want to make an excuse because he is who he is. And maybe it has nothing to do with his brother dying or nothing to do with Jake, or nothing to do with our family experience, but I do think there's some part of it that he is coming through the other end as an adult kind of in a cool way, if that makes sense. You know what I mean? So I say that to. I don't know if it's for optimism or for like, whatever, but. Cause it is hard when you. When you know your kid is living with just big, heavy losses and you want. You know, it's one thing when it's yourself or even your spouse. Cause you're adults and you can figure it out. But it's a lot on kids and there's a lot out there about sibling loss. And, you know, we only know our own loss. Right? Like, I can talk at length about the loss of a kid and what that has done to me in my marriage and my life, but I can't put myself in Ethan's shoes. And I just.
- [29:22]
B
No, what I recognize more often, or at least see a trend with Ruby, is that she will tell me when she finds out of another fellow student that has a similar path as her, you know, a departed sibling of that student, or. It's so, so sad. But lately, I think there's two families that she knows of in school, at least for sure. One where the parent is going through cancer, Cancer treatment. And how she feels about that, because she knows that even though she was so young when it happened to me, I went through that. And I'm hopeful that those. What she's picking up and what she's taking in will just, at the end of the day, make her a better human being, because I really, really hope that she does. Because she. And maybe I. I'm too hard on her, or I'm hard on myself. I'm hard on all of us. But because we've experienced two deaths of children, we need to set an example for other. How people live their life. And that you. We have to be better human beings, not just for ourselves, but for everybody else. So.
- [30:43]
A
No. And, you know, you kind of are letting me segue into this other piece I wanted to talk about, because there is this responsibility, I think, sometimes, right? Yes. And that is kind of like what you're talking about. Like, there is this responsibility for ourselves, but for our living children, of how you carry yourself and how you handle things. And I sometimes hear myself talk, and I feel like, okay, you're coming across, like, judgy, or you're coming across holier than thou or any of those things. But I feel it so, like, deeply that there are choices, right? And people can say, like, oh, I don't know how you do it, or I can't imagine. And I'm like, well, you can imagine because. Yeah, like, you can imagine. Like, I imagine horrible things all the time.
- [31:31]
B
All the time.
- [31:33]
A
All the time. Maybe because of my situation, because I know they can happen. But I mean, one of the hardest things I've had to deal with is managing my living child, right? Like, managing the fear of losing my living child, I guess, is sure not managing him, because that's just parenting. But you know what I mean? Because I know it can happen, right? You know, this can happen. So it's not just this, oh, it'll happen to someone else when you're the one it happens to. So I do think there is. We have to be better humans because we have to show people that you have to. It's like when Brian and I were in that fight, I'm like, yeah, we do have to. Like, why did we just waste 24 hours? Oh, I hurt your feelings. Oh, you hurt my feelings.
- [32:18]
B
Like bickering? Yeah, yeah.
- [32:21]
A
You know, like, and not that. That's not always gonna happen. Of course it is.
- [32:24]
B
But.
- [32:25]
A
But Figuring out how to live with that weight and move forward.
- [32:32]
B
I started to refrain on saying it because, one, it sounds cold and it harsh. But there have been moments where Ruby has disappointed me privately and in front of other people. And when I reached my breaking point, I will say, you have two dead sisters, and how do you think that they would be? You have this life. You are living here right now. You need to behave better. You need to be a better person, because your sisters can't. They're not here for that. And I've said that twice in front of people that they have no pain yet. And I think they definitely perceive me in the wrong light or maybe just for that moment, and that's okay, but it's my own way of getting through what I have to get through. And I don't know how to sugar. There's nothing sugar coat y about the death of your child at all. And so people can think that's harsh at times.
- [33:40]
A
No, but it's real. Right? Like, and you like. I like the. There's nothing sugarcoat y about it. There's no way to make it less horrific, you know, and it's one of the things on this show we talk about a lot, and it's one of the things that I constantly feel like I need to work through even 15 years later, is people are like, okay, I want to know exactly what to say, or, I want to know, you know, how to feel better, because I've had this happen. And I guess that's exactly. That's kind of my vibe, too. Like, there is. I can. I can get through life. Right? Like, and I can. You know, my guest that I talked to that, you know, the episode that came out last week, he talks about, like, you can only have these high highs if you let yourself feel the lows.
- [34:24]
B
Correct.
- [34:24]
A
And I love that. I mean, because I think it's really true. And I think it doesn't just have to be about loss. Right? Like, these people who just coast through life. I don't know. Like, maybe you protect yourself from the sadness, but you also keep yourself from the joys. Right? But there is a complexity to that, and there's a balance to that, because our lows, I think, can get pretty. And I'm not talking mental health. I'm not talking, like, depression of, like, you know, anybody who has a diagnosed illness. Like, I'm not trying to be, you know, like, I'm not trying to tell everyone to buck up, But I do think that there is this piece of, like, you have to let yourself Feel it. And, you know, I've told my friends, a couple, you know, like, I. This past stretch has been difficult for me. And December 5th was, like, this Friday. And I had stuff to do before we got out of town for the weekend, you know, for the anniversary date or whatnot, which I've started just calling the death day because I feel like anniversary gives, like, a little lightness to it. And I'm like, there's no lightness to it. It is the death day. And not everybody takes that really well. They just look at me like I'm a lunatic. But I'm like, it is what it is. But. And I had, like, two meltdowns. Like, I'm not a meltdowny kind of girl. Like, I am not a. Like, throw a tantrum, cry. Like, I just. Like, I usually just go about my way, right? It was like, before 8am I had two of them, like, lost my shit. Like, cried. Like, wasn't in a good space. But I started sharing that with a few people because I think we have to share all the parts of it and not just the happy conversations on the. Not that these are happy conversations, but the conversations that show that you can make your way through grief and whatever. Like, I just think there is this harsh reality of our lives. And whether it comes off on saying that to Ruby or to Ethan, like, I've said similar things, like, you are blessed with life. Jake wasn't. Jake died when he was 4. Like, life is a gift, correct? You know, I have said those things, and I think it's the truth, right? Like, it is the truth. And I think, you know, a lot of people don't understand it. And good for them that they don't, right?
- [36:36]
B
They get to have more of an ease at this time in their life versus us. So. And it's funny you said. You know where the words are. When people know that I'm grieving, what could they say? And sometimes you don't have to say anything at all. I'm okay. You don't have to find the words. I mean, I've had some people just look at me and they'll just embrace me for, you know, a couple seconds, and that's all I need. Because I don't need them to tell me or give me the answers. Because they don't. No, they don't know my pain.
- [37:17]
A
I've often said, too, that sometimes it's like a heart emoji on a text or something, right? Like, it's not. It's not. It doesn't have to be A. You know, you don't have to chat. GPT me. A. No. You know, like, it's just the idea of you can send me something that's like, thinking of Jake today, or it can be the heart. Like, it can just be. You know, I have one friend who created, like. Because I always talk about cardinals and Jake and whatnot. I have one friend who created. Somehow she's more gifted than I am with technology, but, like, has made this little, like, cardinal emoji. So every once in a while, she'll just send it to me. And it does two things. It makes me smile, and it makes me think that she's thinking of Jake. Because that is a huge thing with child loss. Right. And I actually want to be cognizant of this because I've talked a lot about Mirabel and not any about lilu.
- [38:07]
B
I know.
- [38:08]
A
So I want to do that next. Right. Because what is our biggest fear? Or at least my biggest fear is, you know, the biggest fear already happened. Right. Our children died. Yeah. But then you don't ever want people to forget them. And I have a hard time with that sometimes. Right. Like, you want to. The same way I talk about Ethan, I feel like I have to balance it.
- [38:27]
B
Right. Right.
- [38:28]
A
So let's talk a little bit about Lilu, because now I want to balance. Yes.
- [38:31]
B
Yeah, I know. It's. With respect to lilu, I'll at least start with this. And I said this again when we first spoke, is that the universe may have been giving me some grace with losing Lilu, where I didn't have to go through. We didn't have to go through a year's worth of pain to try to save her, even though we knew that it's not going to necessarily help her due to her diagnosis. And she was given two weeks to.
- [39:07]
A
Live, and she lived for three.
- [39:09]
B
And the reason why Lilu was born is because after Mirabel died, there were two things that I did right after she passed away. Well, three things. One, I grieved her loss, and I continue to grieve her loss. And the second thing was I. I joined a parenting group because I. It was a blur with Ruby. I don't know what. What proper parenting she was given versus not. But I said I need to raise a child, and I don't know how to do it anymore because I've just been around.
- [39:40]
A
It's so different.
- [39:41]
B
Cancer treatment and death. That's all I know. So let's try to raise a great human being in Ruby. And then the third thing was I want Ruby. To not be alone in this world. Because if. Because if I'm going to statistically live as long as my father, I have 18 years left on this earth, and that's not enough for me to. To give Ruby support. And can she get that in a sibling? Like, I just didn't want her to be alone. So we tried ivf. I actually did. Because of me being a breast cancer survivor, I was able to get a. Like, a scholarship or a stipend through. Oh, my goodness. What is that cyclist's name?
- [40:32]
A
Lance Armstrong.
- [40:33]
B
Thank you. My husband would kill me if you heard this. He's so mad at me. I mean, he is a Tour de France lover. He went to the Tour de France last year.
- [40:44]
A
Well, that's probably why you blocked it.
- [40:45]
B
You're like, I don't want to. Yeah. Maybe I'm just mad because even though Lance Armstrong gave me a certain amount of money to go through IVF because of my cancer, it didn't work. It failed, and I was mad. And so what do you. What do married couples do when they're mad? You know? Sorry. We. We decided to have one night of, you know, whatever you want to call it anyway, and. What?
- [41:11]
A
Sure.
- [41:11]
B
Okay, great. Unprotected.
- [41:13]
A
In case somebody's listening, saying, what are they talking about?
- [41:16]
B
Good point.
- [41:16]
A
I want to spell it out for them.
- [41:17]
B
Got it. It was unprotected sex, and I got pregnant right away. And I thought, oh, my goodness, this is. This is it. This is my. My request. I'm like, I guess you call it a prayer. My prayer is answered. I am pregnant. I am going to give Ruby a sibling, and it's going to be okay. And of course, while I was pregnant, the doctors were already noting the baby's size and her being smaller, and they wanted me to, in my opinion, become their lab rat. They wanted me in the office every two weeks doing ultrasound scans. They wanted me to test her in, you know, in the womb. And that would have been. There's an element of too much information, maybe. Correct. Correct. Because at the end of the day, if. No matter. And it. And this is not a plug for anybody. It's just me. I could not make the decision to terminate. I thought for some reason, there would be a miracle that would happen.
- [42:29]
A
Did you almost think that there was no chance it could happen twice?
- [42:32]
B
Correct. Yes. Even though. Even though my husband gave me the statistics and we would probably are. The odds were against us, but I said, no, that can't be me. This. Nope. Nope. Even though I'll be the exception, I Will be the exception of the rule. No, it doesn't work that. Work out that way. So. And again, I had touched on this earlier, that typically children with Fanconi anemia can have physical deformities. And because Lilu was so. She was snuggled in so tightly, we could never get a good view of her limbs, of her hands, her fingers, her toes. And so she came into this world, and we were so excited. We were so happy, and I was so happy to have her. And my husband was on her. That's so quick. He was counting all of her limbs. He started with her toes, and then he went up to her hands, and he saw a double thumb on her left hand. And he knew, like, I saw him go pale, go white, like. Like a ghost. And he couldn't handle it. He. He did not sleep with me. Well, in. In the hospital room that evening. He had to go home and be alone. And that's fine. I knew why he had to be alone, so. Sorry.
- [43:57]
A
Go ahead. No, I just. That moment. Right. Like, typically, you know, for. And for the majority of people listening to this show and who we talk to, you know, they talk about childbirth. Right. And it is this moment. And you've experienced this as well. Right. Like, it's just pure joy and. Holy shit. We created this human.
- [44:19]
B
Yes.
- [44:19]
A
And it's just this. Like, you're beaming. You're literally beaming from the inside out.
- [44:24]
B
Yes.
- [44:25]
A
And to have that experience be taken away for both of you, you know, for you. Cause you saw his face. For him, for just even knowing that he had to, before he could even, like, hug and embrace his child, would have to count. You know what I mean?
- [44:41]
B
Like, yes, that's. He loved on her for the time that he did, of course, and we did all of the things, but he left that night, and I was fine with that because I needed to be alone with her.
- [44:57]
A
Because you probably did too, right?
- [44:59]
B
Absolutely. And what was the most heartbreaking is that I don't think the medical staff truly understood, one, my husband's intelligence and two, our history. They had.
- [45:15]
A
And your understanding of what it meant.
- [45:16]
B
Correct, Correct. They had no idea. They just thought he was being vain. I had one doctor come in and she said, well, in. In my culture, it's a sign of good luck. Well, she's going to need a lot of luck because she's going to die. And she did. And she died younger than her statistics, statistically. And there are very. There are different degrees of fa. My kids have the worst kind or had the worst kind of. And their average Lifespan is three to five years. Mirabel lasted three months after her third birthday, and Lili didn't. Lilou lasted as long as she was in me. She. She lived here for 10 months. And I should have known better, should have known. We were so. We were so focused on her sight because actually, Mirabel had cataracts. That's another implication of fa. And so we were constantly looking at her eyes, so focused on her sight, because we thought that that was the first thing to go because that's all we knew. And Lilou started crawling, but she had her head tilted and she wouldn't, like. She wouldn't straighten out this slant. And I shouldn't have asked anybody because people were just talking, like, brushing it off. I shouldn't have done that.
- [46:41]
A
But then it's so hard, though, because sometimes you want. Like, even though you know, you want someone to give you something different, correct.
- [46:47]
B
I want different news. Just different news. And we had. Obviously, after she was birthed, we did the genetic testing, even though we knew she had fa, we got the diagnosis. Actually. I was with Ashley. Schneider was in my home when I got the call of Lilu's diagnosis. And I just lost my shit. And all of the kids were there and we're all together, and here's Ashley trying to comfort me. And she did a great job. But anyway, Lilu starts crawling, but her head's tilted and she's not taking any at that point. Because I'm a breast cancer survivor, I don't. I cannot feed her from my chest. So I had one of my old school friends, we. We grew up together from elementary school through college, or not college, forgive me, high school. Sorry. She donated her breast milk, but I didn't have enough. So I was doing.
- [47:55]
A
Mixing it with.
- [47:56]
B
Yeah, yeah, and.
- [47:57]
A
Or supplementing, I guess they supplement.
- [47:59]
B
Yes. And Lilu stopped ex. Taking it. She was vomiting and crying. She's hungry, but she's vomiting. And we just didn't know. And we went to the doctors, we went to children's hospital, er. And they did every single test under the sun. And here I am pacing. I'm angry because the doctors don't know. And finally we're like, we gotta get out of here. And we had to sign a waiver. Like, we are. We are leaving. They didn't want us to leave. Like, well, you're not answering any of my questions, so why should I be here?
- [48:35]
A
Why am I here?
- [48:36]
B
Why am I here? And as soon as we get home, Dan starts doing his thing and he's researching just like he Did Mirabel, He. He knew. The night that he felt her tumor, he knew what it was. He knew it was a Wilms tumor. We just didn't know it had spread. And with Lilou, he's like, they tested everything except for her head. They did not do an MRI on her head. And the next morning we called. We didn't go through the er. We called the oncologists that took care of Mirabel, and they did what they could or what they did, everything to line it up because, gosh, to push.
- [49:20]
A
It through or get it done.
- [49:20]
B
Yeah, he knew. And what do you know? And she has a brain tumor. Brain tumor.
- [49:26]
A
I mean. And that is one of the things that, you know, like. And I don't ever know how to say this quite right, but, like, I do feel like our medical profession, you know, and in some ways they're remarkable. So I don't mean to, like, bash doctors, I don't mean to bash any of it, but there is this piece where it's just. There is an element where parents will know their kids best. They know what they're dealing with best. And it's just so hard, right? Because I was a little bit, like, I don't have any medical research background, but, like, all of a sudden, our son Jake, he was healthy, healthy, healthy, healthy. Had this twitch of his arm. Then never was the same. Like, literally, we were at Boston Children's for 117 days and, like, discharged from there with zero answers. No idea what happened, no idea what changed his life, no real way to handle it, you know, like, no nothing. Like, absolutely nothing.
- [50:27]
B
Right?
- [50:28]
A
And I just remember I was always like, how can this be? Like, how can this be? So I became like the own, like his own advocate, right? Like, I was like, googling everything. Or I would be like, hey, you know, and I'd have to take notes and remember everything and my husband would write everything down. And we just did it ourselves a little bit, you know, and it's just. I don't know, Like, I just. I think about your story and I think about your husband knowing, and I think about that moment when Lilu was born and. And maybe there are no answers, but I just feel like there's gotta be. There's gotta be more. Like we've gotta hold the standard up higher, I think.
- [51:07]
B
Yes, yes. And. And of course, just like you, we have friends that are doctors and they're amazing physicians, and I don't take their intelligence away. I wish I was like them. But maybe it's a good thing that I'M not like them because I wouldn't be married to my husband because at the end of the day, opposites attract and I am nothing like my head. No, but he was always just like one step ahead, one step ahead of them. And it just reinforces that it takes the family and the medical physicians to.
- [51:45]
A
Be able to come together, working together.
- [51:46]
B
Right. But at the end of the day, you are your best advocate, not for your own health, but just for even your children. Yeah.
- [51:55]
A
So I want to talk now a little bit because I wrote this down and I'm going to read it because in that like survey where I kind of have, you know, guests fill out like just, you know, a little like bio and stuff, you wrote something. I just love what you wrote. So, So I always love that you say, you know, you still say I have four children. And I want to talk about that because I have recently had some experiences that I feel like so uncomfortable with myself for how I answered it. But I wanna read what you wrote. You said, I will always say that I'm a mother of four children. I don't talk about them for people to pity me. I talk about them because I want their spirit to live on. If I can't have that, then I might as well be dead.
- [52:37]
B
Yeah.
- [52:38]
A
And I love that, I think that that is like, I love, like even when you wrote like I'm a mother of four amazing children and you wrote their ages of what they are.
- [52:49]
B
Correct.
- [52:50]
A
Like not, you know, and I, so I take, I, I'm processing all of that because I'm going to share this story and I, I, I want to, I want to pick your brain about it, honestly, because I struggle with this and I've talked about it before, but recently I've done this more times than I'm comfortable with. So you meet people, right? And they'll say, how many kids do you have?
- [53:11]
B
Oh yeah.
- [53:13]
A
And I, I have gotten myself in situations like, especially when Jake first passed that were actually, when Jake first passed, I think I had no filter. So I was always like two. One alive, one dead.
- [53:24]
B
You know, like I would just totally went through that. Yes.
- [53:27]
A
Yeah. Like, just like, like make people cry in the grocery store kind of stuff.
- [53:30]
B
Correct.
- [53:31]
A
No filter.
- [53:32]
B
Correct.
- [53:32]
A
Then I recognized that I was inflicting like uncomfort and like discomfort and pain on people. And that's not really my ultimate goal either. So I would refrain and I'd come up with other things or, and then I, but then I'd end up in weird things. So I went through this whole phase There I kept Jake at 4. But like, Ethan was always like, so then it was just weird too because I'd be like, oh, I have a 16 year old and a 4 year old. Weird, you know, like, so I just, I, I never quite knew. So more recently we were traveling with some people and it just kept coming up. Oh, talk to me about your kids, talk to me about your kids. And I just said, I have one, just said one. And Brian would kind of look at me sometimes because he was kind of like. So then like Brian would answer and he often would like, be a little, not a little, a lot more eloquent than I was and was like, oh, you know, we have a son who's a junior at Syracuse. We also have a son who passed away. Like, he would. Just because I think he was feeling so uncomfortable. And I don't know that because we didn't talk about it, but I feel like he was feeling uncomfortable with my just blatant lying. And then I feel guilty because I feel like here I am this person who is always talking about keeping Jake's memory alive and I run an organization in his name and I do all this work in his name and I have a grief podcast because of his loss. But yet when asked a month ago, you know, not even years ago, like a month ago, I said one and I read yours and it just, it resonated with me, it struck a chord and I don't know, how do you do it? Like, how, like, I love it, I love that you do that. But I, I am so out of habit right now of saying, I have two boys, a 20 year old and a 19 year old.
- [55:11]
B
I actually, it was funny because I went to the gym this morning and at the end of the gym session, I was next to a new member of the gym and she and I are rowing and of course the question came up like, oh, do you have kids? And I said, yeah, four. And she's like, oh my goodness, that household must be so busy and so hectic and all that. And I'm like, yeah, yeah, because it is even with two. Yep. She, we didn't. Whether it was time because there was a lack of time to really dive into it or not. We didn't, I didn't touch on, you know, their ages and what actually happened to Mirabel and lilu. I didn't, we didn't get into that. But there were members that were rowing next to us that know that they know and they were quiet and that's fine because they, I loved that moment. Because there were people that know my story a little bit more than that member will. And she'll learn at some point when she's with me. But I will always say four and they usually remark about, wow, you must be so busy, blah blah, blah. And of course I say yes, because I am. Yep. And then, then it goes back and forth with, well, you know, whoever I'm talking to. They'll talk about their kids names and their ages. And that's when I say, well, my firstborn child is mirabel. She turns 11 in January. She passed away at the age of three. I have Ruby and she's 10. And she is a healthy child. She should be just fine, except for, you know, these other random things that could occur. Right. And then there's Lilu, who. Oh my goodness, not she will. She turns 7 in November on. So her birthday is on All Saints Day on November 1, which how fitting, right, for her to have that birthday and. But she passed away as well. And then I have Cohen, who's three and he's a genetic miracle. And I'm just so glad that I'm able to, to talk about them. And I, I, you know, I don't say it just like that all the time, but. I know, but I'm always reassuring the person that I'm talking to that I'm not trying to cause you pain or make you feel sad. I love talking about my children, all of them, even the ones that aren't here.
- [57:45]
A
I love that so much. And I will say this. I always talk about this show having this component where people can get a takeaway. Right. So even if you're not living with loss and all of that, like you can hear these things and it can impact how you go out in the world and how you, the words you say and the things you choose and like, you know, just a takeaway. This is my takeaway because I loved it when I read it. I love the way you just walk through that as like an example because that's a true like as you're doing it. I was like, this is how I can do this. This gives me the language and the like, I'm gonna have to practice like when people do it because it's easier to just look like a weirdo and say one. And I'm sure people are like, I've just been talking to this person for. And she's sort of normal and social and gregarious and all of a sudden now she looks like death took her over, which it sort of did. Bad choice of words. But you know, like, I literally freeze and answer weird. And then the conversation gets awkward because I have just made it awkward. But I think you answered that and modeled that for me in such a way that I'm going to try it. I will let you know how it works.
- [58:54]
B
Yes. You keep me posted. Absolutely.
- [58:57]
A
It's just. It's such a beautiful way to do it. And I just. And I will tell you, it rips my heart out every time I say one.
- [59:04]
B
I bet it does.
- [59:04]
A
But. But it's just, it's where I've ended up now. And you know, I just. No. So thank you for that.
- [59:11]
B
You're welcome.
- [59:12]
A
One of the last things I want to talk a little bit about is. And we've, we've kind of. It's been an ongoing theme throughout this whole conversation, but it's that whole idea of repeated loss and it's something, you know, you've even referenced with like the loss of your father. Young. Like, I feel like there's even a whole other show here about talking about just the way you've referenced like your own mortality. Yes. And living with that number and living with this. You know, there's part of me that thinks we should all live our lives like that a little bit. Right. Because you would not waste your time with the bullshit. You would just have a clear vision of what is important and like your eye on the prize more than I think most people typically do. But what is. What is. What do people get wrong about the idea of repeated loss? Or. You know, I know I'm asking like 27 questions, but, you know, it's. What do people get wrong about it? Like, what do people say wrong? Or what do they. You know, and that's a weird question because again, I don't, I don't often think that people are malicious or no Mal. Intended, you know, but it doesn't mean that their words don't hurt. Right. It doesn't mean.
- [60:24]
B
Of course, I. Well, I guess it goes back to how I handle grief versus my husband handles grief. After Mirabel died, Dan and I grieved very differently. I. He needed to be in his thoughts. He needed to have his time. Whether that's alone or just with Ruby or with extended family members. And Ruby, he wanted to have that. That bond or, or just re. Establishing bonds and not that I don't want to re. Establish or, or be cloaked to family and friends. I do, I, I thrive on that. But I just had to start, I hate to say that, grinding away. Like I had to just keep moving And I. Maribel died in the middle of the night. I held her. We would rock back and forth, we listen to music. We wouldn't let her go until maybe the early morning. And then when she was, you know, taken. And then I'm in my house with my family. I just remember sitting on the couch, exhausted. I can't cry anymore. And I look at my sister in law and I said, let's paint. I just need to do something. And we painted the entire house, floor to ceiling, just in a lighter, brighter color. I just needed light to shine through my house. And what I realize and what I've learned is that I can never judge how people grieve. I can't. I'm not, I'm not gonna do it because the pain that they feel, they're gonna react and respond to it in whatever way they, they want to, and I'm gonna respect that. And I, and I just want people to respect my choices on how I grieve. And no one's, no one's judged me. If anything, people found out I was painting the house and I had at one point like 20 people in my house helping me paint because, because those were the people that didn't know what to do, didn't know what to say. There's something and they just wanted to do it. And that's, that's what I appreciate. It's so I, I push through my grief. How do I live beyond my two losses? I talk about my children, but when I get too into my thoughts, too close to the dark side, I just keep grinding away at whether it's taking care of the kids or trying to be busy or working. I put a lot of my outlet on my pain is definitely work. My husband, I'm sure, would agree with that.
- [63:08]
A
But.
- [63:11]
B
I, I cannot reaffirm that to, to those people out there that maybe haven't experienced something quite like what we've gone through. You don't have to say any words at all. Because I think the biggest pain that I receive post death for both of them is that they're in a better place. And I sure, sure you say that to like when your parent or your grandparent dies at the age of, when they're 90. Yes, say that in that context. But don't make me feel like I'm a bad mother. Don't make me feel like I've been penalized, that I've done something wrong in life. And this is what I have as, as a penalty. Cause I took that as a penalty. My kids. Yeah, yeah. And so because of that, because I realized that not everybody in my circle or outer sphere, so to speak, has the right words or the right context to, to make me feel, rest assured, is that I have to push through my grief and I have to keep staying busy. And I will always try to be like a happy Liz. And. And I want to be happy. Don't get me wrong. I. It's not good to be sad all the time. But if you don't have the right words to say, don't say anything at all.
- [64:37]
A
Don't say it. And I, I love that story. I love, I love the painting story because I do think it's so important for people to hear, you know, And I love how you said you will never judge how someone grieves because even, you know, even all these people who make these livings out of talking about grief, like, there's still this implication that there's a right or wrong way to do it.
- [64:57]
B
Correct.
- [64:58]
A
And I hate it even all these years later when someone says something that makes me feel like, wait, I'm doing this wrong. Like, no, I'm not doing this wrong. I'm doing it the way that I need to do it.
- [65:06]
B
Correct.
- [65:07]
A
And I love that. And I almost feel like, like I said, I feel like there's so many more things I would love to talk to you about, but I feel like that is such a great, like, way to end this conversation. And maybe we will have to have this conversation again because I do think there's so much. There's so much to talk about. But I just. I'm so grateful for you for sharing this story. Your story. Yes. For giving me a way to talk about Jake in a way that I think I can try to do in a way that doesn't make me feel horrible or make someone else feel horrible.
- [65:40]
B
Yes.
- [65:41]
A
And I just, I have so much, like, love and respect for the way that you are handling it all. And I, you know, it goes without saying, I am sorry for your loss. Right. Like, it sucks to. It sucks to have to bury your children. Like, there's no way around that. But I love the way that you are raising Ruby and Cohen. And I just feel so attached to Ruby because I think I just, I feel that with Ethan. Right. Like, you just. There's heaviness for being the alive sibling. Yes. And, you know, it gives them a unique perspective, but it makes them, in my mind, extra special. So. Thank you for having the. This conversation with me.
- [66:26]
B
Of course.
- [66:27]
A
Thank you for listening to A Place of. Yes. I hope today's conversation brought you comfort, connection, maybe even a little bit of hope. If it did, I'd love for you to subscribe and share this episode with someone who might need it. To see you next time on A Place of Yes.