The Grief Journey By Mayrim
When I launched Relief from Grief in 2022, I thought it would be a short-term project. But the feedback was overwhelming:
•Grievers found inspiration and comfort.
•Listeners who hadn’t experienced loss gained meaningful insights into grief.
•Professionals shared how valuable the podcast was for their clients.
I realized this podcast was meeting a deep, ongoing need — and I was determined to continue serving that need.
I’m honored to partner with Mayrim, an organization dedicated to supporting families who have lost a child. Mayrim is the perfect partner because its founders and members understand the pain of loss firsthand. It’s my hope that each guest shares encouragement and understanding, helping listeners feel less alone. Together, we can find hope and comfort — one moment at a time.
The Grief Journey By Mayrim
Mrs. Elisheva Stein; To Isaac, Chavi, and Barry — With Love, Always.
Use Left/Right to seek, Home/End to jump to start or end. Hold shift to jump forward or backward.
You may have read her story in Ami Magazine — the kind of story that supposedly “doesn’t happen.”
But it did.
To Elisheva Stein.
Losing two children and a husband is a reality most people can’t even imagine, let alone believe could truly happen.
And yet, when you speak to Elisheva, she tells you something so simple, so startling:
“I buy every book. I read. Books on emunah, books on Tehillim… I just try to live with joy, to live connected to Hashem.”
Sometimes she admits that she looks upward and asks her own neshama,
“Why did you agree to all this?”
But listening to Elisheva doesn’t pull you down.
It lifts you.
It makes you realize how extraordinary Klal Yisroel is — how we move through the deepest pain with dignity, faith, and quiet strength.
So come listen to Elisheva.
Be moved. Be strengthened.
But don’t call her “inspirational.”
Because she’ll tell you, “What should I do? I wasn’t given a choice. So I try to do my best with what Hashem gave me.”
Sorry, Elisheva… but to me, that is inspirational.
YouTube: https://youtube.com/playlist?list=PLsK24OSmIYG_XWzeplhfmb8LJcWKphITh&si=untn3fmHLLaEEFNm
Apple: https://podcasts.apple.com/us/podcast/relief-from-grief-by-mayrim/id1788349916
Spotify: https://open.spotify.com/show/3AvWNp0DrHqE5AVYJHooiK?si=ufpIObuGRumS5uFXmvrpgA
Questions or feedback? Email me at: podcast@mayrim.org
Welcome And Mission Of Mayri
SPEAKER_00Welcome to the Greek Journey Podcast, hosted by Mrs. Miriam Riviet and brought to you by May Riven. Mayri is an organization dedicated to supporting families who have experienced the loss of a child. It was founded with Englishmaster the Homo Eva and Miriam Holman. Despite her illness, Miriam devoted herself to addressing the needs of parents and ways, grappling with the immense pain of losing a child. She felt as lost deeply, having experienced it firsthand when her older sister, the homelebah, passed away. Mayrimm continues to uplift and expand on the work Miriam began. Official carriage forward by her parents with great dedication. If you have any questions or comments for the speaker, or if you'd like to suggest a guest for the podcast, please email us at releasefromgrief at mayrim.org.
Meet Ellie Shevistein And Her Children
SPEAKER_01Hi, everybody. Thank you so much for joining the Grief Journey podcast. Today, Mrs. Ellie Shevistein is joining us. Ellie Shevistein is the author of That Never Happens, the Amy Serial that has just ended. So thank you so, so much for coming on. I really appreciate it. Thank you for having us. I guess if we could start a little bit with your story with your children, let's just talk about their names. I've always liked to ask parents about the names of their children.
SPEAKER_05What was your son's name?
SPEAKER_04Isaac. Isaac or yet talk, depending on the deck.
SPEAKER_01Okay. Okay. So let's just talk a little bit about um that they were special needs.
SPEAKER_04Okay. Like what type what type of disabilities they had.
SPEAKER_01I I guess let's just talk a little bit about the stories. They they were born with special needs. You knew as soon as they were born.
Javi’s Early Signs And Endless Testing
Isaac’s Symptoms And The Elusive Diagnosis
SPEAKER_04No, I didn't know as soon as they were born. Um Fabi was diagnosed when she was around five or six months old. Um they didn't really come out of the newborn stage so much. Um and had a lot of different medical issues. Um so she was around then and we noticed um did you want me to tell you like the whole like face in a nutshell or I could tell you a nutshell. Okay, so right. So I noticed different things that were going on with her, and we started doing different tests, and they found calcification in her brain, um, which led to a theoretical diagnosis. Um, but then they did tons and tons of tests and didn't find any of those diagnoses. So they called it a virus in utero. They didn't have a specific diagnosis for it for many years, so then they couldn't diagnose it as a genetic disease. Um, and we just and there was no prognosis and no diagnosis because of that. Because if there's no diagnosis, there's no prognosis, so you can't know what they're dealing with. So just so every single issue that she had, lack of sleep, um, horrible reflux, different um inability to sit up and hold up her head and all these different things, each thing we had to address in its own, encapsulated on its own issue, right? So a different specialist for every part of the body. And I was like the the coordinator of specialists, you know, um, because pediatricians they can take some of this on, but not a lot. There aren't specifically pediatricians for children with disabilities like this. Um, however, I did find out that's a whole thing later in life that this is there's no adult doctors for people with this level of care required. So pediatricians are better than when they hit adulthood, but that's a different story. Um, so Javi was um Javi was about almost three years old when I was Zilkha to have Isaac. We had also had some problems with infertility as well. Um, and there was no indicators that it was a genetic disease. Uh so I had Isaac, and a few months later, I don't remember. Oh, he was at the pediatrician, and they said that he wasn't seeing normally for his age when he was about four months old, and start doing all the testing again, went to the neurologist, and that was a different neurologist who then said, I suspect the genetic disease, and I think it might be this one, but there's no test for it. Um, they fit the qualifications, but not all the qualifications, because a lot of the people who were diagnosed with that disease at the time, it's called Acardi Gutiera syndrome, they were much less cognitively intact than my kids were. My kids were very, very smart. Um, not physically able to do things, but very, very smart. Um so they didn't ever get that specific diagnosis until after Fabi was NIFTA and they finally found the gene.
SPEAKER_01They were able to find the for her, they were able to find the gene only after she was NIFTA?
SPEAKER_04Yeah, yeah, for Isaac, they found the gene. They did testing. In other words, you know Oh, Favi.
SPEAKER_01It wasn't like a post-mortem checkup or whatever.
SPEAKER_04No, they didn't check it on her at all. They they didn't check her. Actually, we I still had some um things in the house that had her DNA in it, so they used that. Um, and actually um Bone Olam was the ones who helped us find the gene. It was not the doctors who were doing the tests at the time, they didn't have it, and it was actually a um, I'm trying to figure out what the word would be. Um place in Israel that was that did the actual testing to find the actual gene before through Bone Olam, before the doctors that were are working on it came up with it.
SPEAKER_01What was that like? So never having a diagnosis. That's like the hardest thing, no?
SPEAKER_04Really, really, really difficult because you don't know what to expect and you don't know how to treat them. Right.
SPEAKER_01So And did it make a difference in Isaac's cure once you found that gene?
Genetic Clues And AGS Uncertainty
SPEAKER_04No, not specifically because it was still so long ago. So let's see, he was around 15, so that would be about 15 years ago. Um, and they didn't come out with ways to treat it. They actually did come out with an experimental drug that they could, a clinic clinical trial that they could get on to right around the time he was 18. And I tried to get him on, and they told me he was a drop too old, and they wouldn't give it to him. But the truth is that it works because it works to treat the brain cells that were damaged, and then as they get older, they can't really be treated. So it like stops the progression of the disease, is what it does. So now there is a Facebook group for it, and there's a lot of kids who are on these medications. I haven't looked to see how much it helps them because I don't really want to know. Um but I do see people, I do see people talking about being on those medications.
SPEAKER_01And is Bone Olam starting to test for this disease?
SPEAKER_04I don't know. I lost contact with the person who had helped me and he actually stopped working there. Um you mean you mean like Dor Dor uh Misharim? Like that's it. Oh, I meant to say I don't think that they are. Um in all, it's not specifically an Ashkenazi disease. There's as far as I know, and I haven't done research in a while, there were seven genes that were found. Um they did find that our gene specifically was Ashkenazi. Um that was 12 to 15 AGS5. But then when I was on the Facebook group, I met somebody who was very not Jewish, didn't know anything about having Jewish blood, who had the same gene. So, but I didn't go into the in-depth with the geneticist to see what that's all about at all. Right, right. Um, but if you know that you're a carrier, Dory Sharm could test for the other person to see if they're a carrier. But I don't think that they're doing specifically. I mean, it's a very rare disease. I don't know how many people worldwide have it now, but when they were growing up, it was 500 people worldwide.
unknownWow.
Trials, Treatments, And What Came Too Late
SPEAKER_04I mean, maybe now that they found the gene, and then people have a lot of there's also very, very many different levels of disabilities and issues for the body, it creates. So it's an autoimmune disease, and for some people, there are people who are walking and talking with it, and there are people who are severely, severely disabled and medically compromised because of it. So I think it's just depends on how the gene hits the person. Again, like I'm definitely not a geneticist. I I I play a doctor in real life. Um I call it the school of school of life. Everyone always asked me whenever we would go to um doctors' visits and stuff or and be in the hospital, they're like, oh, so what kind of doctor are you? I'm like, school of life. Totally. Um, I'm like the specialist of every single, you know, and you pick a body apart, I pretty much can tell you about how it works and what to do for it if it has a problem, that kind of thing. But um geneticist, not that much. That's very intense chemistry and all those things. Probably has some math in it, which I'm allergic to.
SPEAKER_01Um So how old was Javi when she was nepha?
SPEAKER_04Javi was 14. And that was 16 years ago.
SPEAKER_01And then uh and then Isaac died like 10. No, Isaac died five years ago.
SPEAKER_04It's just five years ago.
SPEAKER_01Oh, so like eight years after after Javi.
SPEAKER_04Yeah, yeah, like I said, don't make me genetically.
unknownOkay.
SPEAKER_01Oh my goodness. Wow. Okay. Um, you know, I I was interesting when I I I wrote this book, right? We were talking about this book that um just came out forever in our hearts. And when I wrote the book and I started talking to parents that lost special needs children, I was hit with like the intensity of how much appearance that lose um special needs of children. Like in a certain sense, the the grief is so much stronger than when losing like a healthy child because the the care is not 24 hours a day. No. So I'm wondering what you have to say about that.
Living Without Prognosis And Playing Coordinator
SPEAKER_04So, first of all, grieving for a child with different these levels of disabilities starts when they get your you get your diagnosis or you realize there's something wrong. So you're grieving them their whole life. You're grieving the expectation of having a typical child. I always the book What to expect when you're expecting. I wanted to like have a burning ceremony for it. Um, you know, I was like, no, I don't think so, and what to expect when your child is this age and that age, right? I'm like, not for everybody. Um so and it is, it's really a grieving process as you're taking care of them. It's it's very, it's hard to describe, you know, because you're so sad that you're not having the child, they're not talking, they're not walking, they're not able to do anything for themselves, they're not going to have a typical life in any means, they're not going to grow up and get married and have kids. So that's while they're alive, right? So it's like two different things. So that's a horrible level of grief that people shouldn't have to understand. And then when you lose them, you know, a typical kid, at some point you start to you're caring, your level of one-to-one care starts to decline, you know, even if they would like you to walk around, you know, carrying them in a cushion all day long. Um you don't have to spoon feed them literally, or change them, or do all these things that these children rely on you more than 24-7. Right? So then when that gets taken away from you, it's like you lose the whole part of yourself. You know, and there are things that I still cannot do. Uh you know, I was had two children in wheelchairs for wait, it's close to 27 years. Right? I will not walk through a revolving door. Are you serious?
SPEAKER_01Yeah, I can't do it because it hurts too much or because you don't have to.
SPEAKER_04I just I never was able to do it with them because you can't walk through a revolving door when you have a wheelchair, and now I'm like, I'm not going through those. Oh, there are lots of other things. I've I'll go down an escalator, which I couldn't do before. I'll do a lot of different things, but I don't know why. And there's no real explanation for it. But when I see a revolving door, I avoid it at all costs.
SPEAKER_02Wow.
SPEAKER_04Um, I also notice when everything when things are not accessible constantly. That was a very, very big part of my um life as an advocate for people with disabilities was noticing how things are not accessible. Um, I once wrote an article, but my friends call me the the park the parking lot vigilante because I used to get into so much trouble with people yelling at them about parking in handicapped stocks.
Grief While Caregiving And Daily Realities
SPEAKER_01Wow. Wow. That still happens a lot. People really park in handicap stuff. That's um, it's like it's mind-boggling to imagine.
SPEAKER_04All the time. And somebody even once said to me, 'Like, when I wasn't with my kids, why don't you just and I have you know, I had a car that I could park in if and a handicap's well, well, why don't you just do it? You're handicapped for time.' I'm like, no, because I know what it's like to need it. And if people take advantage of it and they park in it and I can't use it, well, then I can't get out of the car with my child and go into wherever it is I'm gonna be. So no, but I did. I had big fights. I still I still get very upset. I still take pictures of people parking in these things and it gets me really. Oh yeah, for sure. Not even a question. Or if we go any place, I'm like, well, this is not handicapped accessible. Um, yeah, no, I actually I sued um Hackenstack Medical Center over it.
SPEAKER_05You did?
SPEAKER_04Yep, I took them to court department with the Department of Justice.
SPEAKER_01For what? For not having enough spaces?
SPEAKER_04Yeah, because they took down a building where they had all the handicapped parking spaces and then didn't put up any comparable spaces.
SPEAKER_01Yeah, that's crazy. A hospital used to be a good thing. I didn't win.
SPEAKER_04I didn't, yeah, exactly. I went to mediation and then they never upheld their end of the mediation. Um and then the Department of Justice said they weren't going to do anything else about it because it required more money for an investigation that they weren't prepared to do.
SPEAKER_01Right. Oh well.
SPEAKER_04So interesting.
SPEAKER_01So let me ask you like this, because you know, when you describe how the grief process starts right away, but when you are writing your story, the what you portray is a mother that may be overwhelmed, but also like upbeat and happy and loves her kids exactly who they are like so much and will do anything for them. Like I think it was it was recently, I think you wrote about taking Isaac to the beach and the last time all the periphernalia. And I'm like, whoa, like why? You don't have to do this for him. He doesn't even like like he doesn't like help me find you home, you know. Like the feelings of like what you did for them was just unbelievable.
SPEAKER_04I didn't think he would be fine just being home because it wouldn't how would that be fair to him? You know, um I feel like I love them more than other people love their kids. No, I'm joking. Um I I can't explain it. I don't know if everybody is like that. I am who I am. That just kind of came that way. Um I don't know if everybody would do that for their kids. Wait, can you be more specific with the question? Because I feel like I go off on tangents a lot. How was I a happy person? Is that what you're asking?
SPEAKER_01Um my question was like Yeah, like when you when you say that you were grieving, you know, every stage since you found out about this disease, obviously it makes sense that you grieve every stage, but you also present yourself, and I don't think it was a fake when you write your story like about how what you did for them and the the dedication and like you did it with like happiness, like you just said, like you you you didn't want them to stay home because you thought it wouldn't be fair to him.
Accessibility Fights And Advocacy Battles
SPEAKER_04What would be the purpose of Hashem bringing them into the world if I was just a miserable person over it? Like there has to be, in other words, Hashem gives everybody multitudes of challenges. Um, but I'm always looking for the purpose of why we have to suffer. Like the yeah, the grief was there, but it's still there for a purpose. And nobody in the world wants to see me go around miserable all the time. You know, so if I I don't think I I don't think I consciously said, oh, I'm just gonna be happier, but even though I'm grieving inside, I don't think I said that. I think it's just it was a lot of it's sarcasm, which really helps, you know, and dark humor, which if you're my friends, you you know that, but it's it's a coping mechanism, I think, you know. Um and also because I mean I honestly have family members who expected even more from me. They didn't think that my life should change at all. And what does that even mean? Oh, I don't know how much I want to get they really expected me to be there for them as much as uh n typical people with typical families would be.
SPEAKER_03Okay.
SPEAKER_04And I didn't agree. Um I kind of expected them to be there for me, but they didn't want to be. So just because the time gave that to us gave it to us doesn't mean that ever gave us this test. Like I say, some people got a big fat test. Some people not everybody gets an A on the test.
SPEAKER_05Oh, okay.
SPEAKER_04Some people get a big thing. So like how can I I don't know how I could be happy. I I guess I don't know. It's just the way Hashem made me. Maybe he gave me the coping mechanisms and gave me the test so that I could do both.
unknownRight.
SPEAKER_04That's for sure.
SPEAKER_01He gives everyone like coping mechanisms before he gives them a test.
SPEAKER_04You know, it's the fuel before the Maka. Right. Maybe he gave me a difficult childhood to give me the resilience to be able to handle this. I don't know.
SPEAKER_01So that was my next question. Like where did you find this Amuna? I mean, you're really talking very strong Amuna right now. You know that it's a Mashem. You know Hashem doesn't want you to walk around miserable. You know you're being tested. So did that come from earlier on, or did it come when they were born and you had to find it?
Humor, Coping, And Choosing Joy
SPEAKER_04I wouldn't say it's not from earlier on, although I did choose to be much more from than my parents. Um, I was brought up what you would call conservadox. Like my father was Israeli, so he was what they call misorti, right? Or masorti. So it's traditional, like you went. So I'm sorry. But I we were sent to yeshivas because they didn't want us to go to public school, so we would have some sort of relationship with them. Um, and went to NCSY and yeshivas and that kind of influenced my decision that how I wanted to be when I grew up in terms of observing Shabbos and terramitsvos. And I think that did that did I look at Imuna in that way back then? No, for sure not, because you know, you're a kid, you're just trying to exist, and then it was just a very complicated life because my father was a survivor and he just had so much on him. Um, you know, and my mother had her own challenges growing up as well, so that becomes a whole challenging environment. So did I think that of it as a Muna then? No. But the older I got, I'd say when my kids were born, that's when I realized more that I still wanted to be a from person, right? But it's a constant battle. There were days when I didn't want to be. There were there were years my husband didn't want to get an Aaliyah, right? And I was upset with him for not wanting to get Aaliyah, but I can't force him to do that. You know, he was angry. He still was Showmer Chavez, but he was angry. So you can kind of do both. It's so we're human beings are so interesting because we can compartmentalize, right?
SPEAKER_03Right.
SPEAKER_04So you can be angry at us, but at least you're still having a conversation with him and being angry at him. You're not walking away. Right. Um and one of the things that I've always wanted to do, and I'm actually sort of doing it right now, is speak to Holocaust survivors because it's it's every single thing is an individual, I guess you would say it's a choice, right? Some people came out of that atrocity that no one can possibly imagine unless you live through it, with complete and total amuna, and some completely walked away from God, or they weren't even brought up believing in God, and then they were just put in that situation. So then why should they start to believe? You know, it's like a whole thing. Like with the hostages now, also that they they all said that they found God in the tunnels, you know? Um, does he give us those challenges so that we'll have more amuna? I don't know. But what would be the purpose of having such a difficult life for it to be an empty life?
SPEAKER_03Right.
Faith, Doubt, And Working On Emunah
SPEAKER_04Right, and to just say, oh, this is the way that God did it. So I mean, every single day. Like I just said to you before we got on. Like I was just being Mafresh Pala, and this week was a very, very hard week, not related to any of the things that you're interviewing me about, other things that life just keeps throwing at me. And I was Mafresh, and I'm like, okay, God, we have to have a talk. You know, isn't it enough? It's enough already. I feel like it's enough already. You give me all these different challenges, and I think I've done okay with them, but you keep giving me more. So, what is it that you want? Why did you put me here? So it's this constant conversation with him. And and also I learned recently, um, I give a share for every one of the yard sites that I go through because it helps me to learn something different. And I'm also a little bit of a book addict. Um, so I'm like not allowed to go into sperm stores, but um so there's so many different things written on how to have better amuna, right? Shahabi Tapon and um Tama Divora and you name it, even Eov, right? My friends call me Eovus. I'm like, thank you. Um exactly. Um so I'm like, but what's the point of having all of those things and all of those stories if not for us to learn from them? So, but I did learn recently, I actually went to Rev Gamlio Rabinovs and his sister all. I went for a breakfast, and he gave me, he wrote a safer on living with Muna. It's the essence of a moon. I have it sitting right here. And in it, he says that you're not supposed to just learn it once, you're supposed to continuously learn it.
SPEAKER_01Right.
SPEAKER_04That's the way to hold on to it.
SPEAKER_01You know, you know, all these Muna books that are coming out, number seven, eight, nine, and every time I see a new one, I mean it's wonderful. And I'm not, but I think to myself, why would I buy a new one until I went through number one like so much that I I'm I'm reading it by heart, you know, that I've really internalized it.
SPEAKER_04So I guess I'm different because I'm like, oh wait, maybe there's a different answer. Oh wait, maybe there's a different answer. So I'm like, oh, let me try that one. No, let me try that one. Okay. That's also a path to go. You know, like there's I keep thinking that about Tehillum. Like, I don't want to just say tahilum, I want to understand them because to me, most of the tahilum are the same. There's all different levels, but you know, in terms of each parac that says a different thing, but a lot of them are very, very similar. So why have so many different kinds of preken? Why not have 10? Covers it all, we're you got it, right? And like, isn't it better to say the ones that you understand more and that you feel and have more meaning than just to say it by rote?
SPEAKER_03Right.
SPEAKER_04You know, like so the same thing. I have a lot of books on Tahillum also trying to learn this, you know.
SPEAKER_01So you have a holy house, that's for sure.
SPEAKER_04I have a whole I guess so. Right. And they see me coming in this farm store and they're like, oh look, she's back. No. Um is this new book new book. I know, I know. And now and now that I'm taking a master's course, I'm getting even different books and more books. And my daughter's like, no more books. I'm like, that's okay, you know, eventually I'll get to read them all. But also, you know, like technology really is a broccolo because there are amazing podcasts out there. You know, there's The Living with a Muna Shear by Rebbe Ephraim Goldberg, right? And and then there's also, you know, there's a lot of things that you can listen to on tower anytime. There's so many different ones, and it's amazing because we have the ability to keep working on it. And it's not just like you would think it's like a one and done deal. Okay, so I have a Muna, and I know that there's a reason for all this, and blah, blah, blah, and let's just keep going. But it's not because, and this is what I read in Rev Revenux's um SafeRe, is that you have to work on it every single day. Otherwise, every time you're throwing a challenge, you're gonna say, you're just gonna drop everything.
SPEAKER_01Well, not just that, it's that a small thing will become a huge challenge. Like suddenly sending in traffic will be so huge if you're running a few minutes late. When if you're learning it and reading it every day, it's like, okay, this is where I'm supposed to be right now. Like, it's okay.
Books, Learning, And Daily Practice
SPEAKER_04He's so funny. It's true. This is where I'm supposed to be right now, except for the email that I heard him say about the mother who was trying to get her eighth grader up and she was listening to the sheer, and her eighth grader sticks her head out from under the blanket and says, This is where I'm supposed to be right now. Instead of getting up. And I'm laughing my head up because I can just see my eighth grader doing that. You know, and I'm like, no, that's not the whole point, but it's true. Um, I'm gonna do the thing that we were talking about. So it's it's true, like you you need, but it's so hard to constantly hold on to that. It's much easier to be angry that that crazy person is driving in front of me, right? You know, and that person, and why why did they whatever, you know, choose to go in that direction, or why did anybody choose to do all the you know the traffic is brutal? Like, why are they driving? It's much easier to be angry about it, especially if you're stressed out and you're running late.
SPEAKER_01When someone's driving very slow in front of you, I'm like, Don't you have a life, don't you have things to do? Because if you don't like, I do, so please hurry up.
SPEAKER_04Oh, our our joke is that I need a boot on the front of my car to pick them with. Um like the or we have the oh, the slow people knew they know to be in front of you today. It's but it's true, it's very hard. You know, there's a lot of things like that. And right, and so people you're like you're you're late, you miss a plane or something like that because of it. It's really stressful, like you know, but to to come to that. So there are very different things that you know we try to figure out how to put it to understand that that's where Hashem wants us to be for those little moments as well as the very big moments. That's the part that's the hardest part I find to like to understand, right? He he wants us to be there, he wants us to understand that this challenge, this kid, I mean, for other people who have other children, you know, um each one of them is gonna give us a challenge, and there might be big ones and little ones, and we have to have a Muna through all of them.
SPEAKER_03Right.
Self-Care, Marriage, And Teamwork
SPEAKER_04And it's so hard. And and by the way, grief doesn't go away, it stays in your body. You know, it affects your body no matter what you do. Even if you're trying to have even having a Muna, it still affects your body. You know, um, and then learning how to self-care as a Jewish mother is very challenging. Very, very that's a big challenge because it's really important for us to do a little self-care. And you're like, well, why am I supposed to do that? And and it it's you know, there are days. The walking doesn't happen, the vegetables don't cut themselves, you know. Um but I think that that really helped me also because for so many years I literally couldn't, you know, I would send somebody a picture of a whole bunch of chocolate bars, that was my supper, you know.
SPEAKER_01Wow. Um, or whatever, like, you know, it was a miracle that your husband could help you, like was it equal or was it really mostly on you?
SPEAKER_04My husband had a full-time job. Um, obviously, because otherwise we would have been and I also said if he if I had to pay the phone bill and the electric bill, we'd be sitting in the dark with no phone. Um, you know. So and he had to pay the bills and he had a full-time job, and he also did a lot of the physical work around the house himself. Like we couldn't afford to hire people to do it, and he was a contractor by trade when he was growing up, so he was able to do all these things. So he helped me with them. I can't, I don't have a comparison, you know, to say, do other husbands help more versus less? I would say he helped me. More with the physical care of the kids than let's say the house.
SPEAKER_01But he was, he was he didn't pretend that like they didn't exist. Like he saw that he loved them to pieces.
SPEAKER_04He was dedicated to them above anything and everything.
SPEAKER_02Wow.
SPEAKER_04He beyond, beyond dedicated to them. He would sit with Isaac and feed him supper every night, and and while he was eating his own supper, and Isaac would hit him and say, more. Right? And he would give him over him no matter what. You know.
SPEAKER_03Wow.
SPEAKER_04Yeah, no. He built things for our kids that nobody else would have done. Like Flavi loved going in swings, absolutely loved swings. And you know, the bigger you get, the bigger the kid gets, then you need these very special swings, which means special supports. We had a swing in our sukka. We had a swing inside our house from the time they were little. In our other house, we lived on the second floor of a two-family house. And he dragged a huge beam up the side of the house and installed it in the in the ceiling to put a safe swing in our ceiling.
SPEAKER_05Wow.
SPEAKER_04Um, for her bot mitzvah, he built a freestanding swing frame and we brought it to the place that we were having her bot mitzvah so she could be in the swing.
Making Happiness Happen: Swings And Beach Days
SPEAKER_01Wow. Unbelievable.
SPEAKER_04Just to make her happy. Like I think that was our modus aberronde, just to make them happy. Because you know, they had really hard lives. They had really, really, really hard lives, and they were very aware of their limitations, and they couldn't do anything to help themselves.
SPEAKER_01They were aware mentally, they were aware of their limitations.
SPEAKER_04So smart. So, so, so smart.
SPEAKER_01Really?
SPEAKER_04Yeah, I mean, it was such a shonda that they couldn't specifically talk. Um, Javi, the only thing she could ever say was, I go. And she wanted to go all the time. She kicked herself off the bed several times. And I'm like, Where do you think you're going when she landed on the floor? I'm like, what did you think? What were you thinking? She just wanted to go. You know. Um and you know, and like, but they got their points across. They definitely did. Isaac would roll his eyes, he would pout, she would also, you know, if we would go near any mall in the tri-state area, she would start kicking and screaming because she needed to go shopping, you know. Everybody knew, right? Everyone knew. Uh, like we couldn't go to a fascinating, we couldn't go to Paris Charna because it was right near Palisade Mall. You know, I'm like, we're not going shopping, we're going to a wedding. Get over it, you know. Um, right. Uh, people would think like they would see like us talking to them and think that we were completely crazy. Like they also had our sense of humor, very sarcastic, very whatever. So, like, um, you know the song Here Comes the Paysach Blues?
SPEAKER_05Of course, right?
SPEAKER_04So, in our house, Paysath is the is the P word, right? Because can you imagine taking somebody who already has a 48-7 job and throwing Paysach in there?
unknownNo.
SPEAKER_04And we couldn't go anywhere, no one else's house was accessible. We couldn't go anywhere, we didn't go anywhere for Paysach for many, many, many, many years. And so I had to make Paysach, and it's not like we could afford to hire full-time help. You know, so it was a miracle that PaySach happened in our house. So it was a running joke around here that I hated that song. And I'm once standing in a supermarket with Isaac, and the first bars of the song comes on, and he started laughing at me. And I'm standing there going, Don't you even think about it? Quit laughing at me. And this woman walking past, she's just looking at me. She's like, You're yelling at him. I'm like, he was laughing at me.
SPEAKER_05What do you want from me? That's not fair. That's so funny. Oh my god.
SPEAKER_04Yeah, they were, I mean, they were amazing, amazing kids. They didn't ask to be worn like this, but just like we didn't ask to have them like this, you know.
SPEAKER_01Really, unbelievable. So what happened? So Isaac was nifter, and then like shortly after that, your husband got sick.
Loss Upon Loss And Surviving Cancer
SPEAKER_04Yeah. Um, well, my husband was sick actually the first time 11 years ago. Um, so that Isaac was still around. And I'm trying to think of the order of things. Give me one second. My husband was diagnosed with cancer during the Shiva for his mother, who had had cancer.
SPEAKER_05Oh my god.
SPEAKER_04While my mother had cancer.
SPEAKER_05Wow.
SPEAKER_04Right. But he was sick before he was diagnosed.
SPEAKER_05So all three of them had cancer at the same time.
SPEAKER_04Right. And um, that was a different cancer, and Barak Hashem, it was a complete miracle he made it through. He spent six months in and out of the hospital. Um, so my daughter was a baby, she was a year and a half old, and Isaac was about 16 or 17, right? That was intensely crazy. And then um, and my mother didn't make it through her cancer, and neither did my mother-in-law. And then Isaac was niptered five years ago, and we had another loss also, which I can't really get into so much, but we did. And right after that, my husband was diagnosed with stage four cancer. Yeah, and so that's right. I can't even think like the timeline of that. Um it was but he was diagnosed in July of 22 and he was nifter in November of 23.
SPEAKER_05July to November.
SPEAKER_01Wow.
SPEAKER_04Yeah, so a little over a year.
SPEAKER_01Wow. Mm-hmm. Okay, so I don't even know what to say. So do we talk about the fact that you're a bereaved mother twice and a widow, or do we talk about that for Hashem? You have a healthy daughter who's now in eighth grade, but like one sister she never knew, she lost a brother and she lost a father, and you have to be the support for that.
SPEAKER_04And she has no grandparents, so grandparents. Yeah. My parents were both in the third, they're pretty young, considerably young.
SPEAKER_02Yeah.
SPEAKER_04Um yeah, I mean yeah. Um most people I know my age still have other parents.
SPEAKER_02Right.
SPEAKER_04Um, but my mother's been gone ten years beyond, and my father fourteen years.
SPEAKER_02Wow.
SPEAKER_05Mm-hmm.
unknownYeah.
Parenting An Only Child Through Grief
SPEAKER_04My mother was your mother met your daughter. Oh, my mother and my daughter were very, very close. She was two and a half. She was two and a half when my mother was met. And she was very, very close. I don't remember. Kinehar and my daughter was very, very smart. And when she was six months old, my mother went to Erasmus Roll um for two weeks. And when she came back, my daughter went crazy. She was six months old, and she was like she yeah, she was going crazy. Yeah. She was like, and so she was very, very close with her, and it was really hard on her. And she doesn't even realize it now, she doesn't remember her so much. But um, yeah, and she was alive when my mother-in-law was also. She was she was a year. She was also alive when my mother-in-law was never. She was a little over a year, yeah.
SPEAKER_01So how do you like her mother?
SPEAKER_04Like this is the challenge of the week and the day and the year. Um, it is really, really hard. I feel, I mean, my heart breaks for her constantly. But like I told her her teachers at parent teachers' conferences, I'm a strict mom. It doesn't mean she can get away with murder. It's not a free pass. You know, you still need to be, you can't just walk around going, well, I lost everyone in my life, so I can do whatever I want. It doesn't work like that because you still have to be responsible for your schoolwork. You still have to be responsible for doing things that your mother expects you to do. And yeah, sometimes you can get a free pass on it. Like she didn't want to go to school on her father's yard site, both the English and the Hebrew. And I'm like, okay.
SPEAKER_01One second. How old was she when her father was NIFTA?
SPEAKER_04She it was two weeks before she turned 11. Okay. Yeah.
SPEAKER_05Wow, that's really hard.
SPEAKER_01That's like a hard eight.
SPEAKER_04I mean, and she was seven when her brother was nifter, and she was really close with him. Really, really, really close with him. And she had just spent the whole year being home with him for COVID.
SPEAKER_02Oh wow.
SPEAKER_04Yeah. And he wasn't nifter from COVID, but like it was the year, it was 2020, the October of 2020. So, and she was home. I kept her home that whole year because I was nervous wrecked that she would get COVID. Right. Um, so she's been through a lot. Um, how am I her mother? Very complicated leak. With very complicated league. With a lot of help. I I really, really, truly believe in getting help as much as possible and talking to as many people as I can to try and help her the best way I can and to be the best mother that I can for her. And there are days when I want to scream and shout and yell, no, I'm not doing that. Or, you know, I'm not, I don't want to be the mom today.
unknownRight.
SPEAKER_05You know, I'm done being an adult today. I I I can't. But I'm still the adult.
SPEAKER_01Does she ever get angry? Like, why was I born into such a stupid family or like things like that?
Discipline, Boundaries, And Compassion
SPEAKER_04Not a stupid family, but she gets angry about why she had to go through all of this for sure. It's not even a question. Um, and she did she get angry? I think she more I don't know if the word is anger, but she's very, very protective of what she's been through. And, you know, she's a preteen, so she's going through so much and being a preteen, and she's so different from everybody else she knows. You know, even if she knows somebody whose parents are divorced, there's no one in her grade who's lost a parent. And a sibling, or either or.
SPEAKER_02Right.
SPEAKER_04You know, so she but she wants to be seen as normal.
SPEAKER_03Right.
SPEAKER_04Just like when people call me inspirational, and me and my friends are like, yeah, okay, sure. Actually, someone said to me this morning in the store, I'm like, oh, someone called me inspirational last night. She goes, as if you chose it. I'm like, exactly. I didn't get up one day and say, Oh, this is what I want for my life, and I no, I didn't pick this. I actually once many, many years ago, said to my friend, that's it. I'm not talking to my nishema anymore. Who told it to pick this life? Because you know how your nishama picks your life, right? Right. I am not talking to it ever again. Who told it? You know, like, but seriously, like it's not it doesn't help to be called that because I didn't choose it.
SPEAKER_05You know. Well, I mean, maybe I chose my reactions, maybe. Right.
SPEAKER_04Yeah, but then it what would like again, like what would be the point of like never getting out of bed? Then how would that accomplish anything?
SPEAKER_01It wouldn't, but you're still choosing to get out of bed and to do your life and to have a productive life and to be the best mother that you could be and the best the best, you know, the best lady that you could be in this world, right? So that is inspirational, I'm sorry to say.
SPEAKER_04I'm sorry.
SPEAKER_01Sorry for the insults, but you're inspirational.
SPEAKER_04That's it, right? That's premier insult number one.
SPEAKER_05Um okay, but I don't feel like maybe it's to help other people.
SPEAKER_04Right. So I do have I have a friend who lost her special needs son and she is stuck in it. She does, I mean she goes to work, but she just doesn't want to have anything to do with anything else at all ever. Um, and she actually gave me a book that's called It's Okay Not to Be Okay. And I hate to tell her, I don't know if she's gonna see this, but I didn't read it.
SPEAKER_05Um does it?
Therapy, Community Help, And Hard Choices
SPEAKER_04I never read it. Um it's for a hundred I'm not saying that you have to be okay. And it is okay not to be okay, but not every minute of your life because the large majority of the people out there are expecting normal.
SPEAKER_01No, but I'll tell you what what's really about you is that technically you could, you know, put yourself on a um pedestal of craziness and say, like, no one has a life like me, no one went through so many losses, no, like, like I'm on the highest pedestal and no one could, you know, reach me. But you're not you're not doing that. You're not staying stuck in a pity party. And that in itself is very that's huge.
SPEAKER_04I mean, I'm not saying that there are moments that aren't. I'm not. It's just that the large larger of the time I'm not.
SPEAKER_05So being human is annoying. I keep telling people that. I'm like, oh, who wants to be human in all this?
SPEAKER_04You know, she's look, she said to me the other day that she learned and she goes, Moloch can stand on one foot. I'm like, well, I think they stand for two feet together. That's why we do, you know, the Amida like that. And I'm like, I don't remember being a Molloch, so sometimes my feet separate a little. You know. That's okay because also I want a model for her.
SPEAKER_01And you are, you're obviously such a good model.
SPEAKER_04I I try to be. There are days when I lose it.
SPEAKER_01Um so you're also humanity. It's okay to sometimes be human.
SPEAKER_04It is okay to be human, but and right like I told you, there are people in my life who expect me to be a lot more. And for them, I'm like, no, you people are crazy. And unfortunately, I've had to stop having relationships with them, which has taken away more family from her.
unknownWow.
SPEAKER_04And it's really, really, really horrible and really sad. And I really wish that they would work on themselves the same way, but I can't make them.
unknownExactly.
Writing As Healing And Cost
SPEAKER_04I've tried a million different ways and written them things and you know, and so much, and realized that my expectations have to be different. And there and by the way, no one I do expect way too much. Everyone thinks I'm crazy, like the level of things that I expect to get done in a day, or that I do for other people, and that you know, not everybody expects this level, and it's okay not to. I'm not saying that people have to. Um, I guess I just kind of came that way. I don't know. I've been doing it since I was very young. I kind of took over because my mom wasn't really great at being a mother. So it gets in it got instilled, and it's very hard to uninstill it. I'm working on it actually. I'm working, I'm working on knowing that I don't have to jump and run and do every single thing she wants. It's very hard because of taking care of my other kids, that they couldn't ask me for what they needed, and I had to intuit everything that they needed. And a lot of times I still have a lot of regressive things that I wasn't able to help them with. Um, so it's different, it's a completely different way of parenting that she's gonna have to do things on her own and mess up. And I just want to help her and cure it all for her.
unknownRight.
SPEAKER_04It's a big learning curve, really big. So it might it might make me a little bit too much mommy-ish.
SPEAKER_05You know, right, right.
SPEAKER_04Like, like I said, carrying her around in a cushion all day long kind of thing. So I just I'm telling you, I I we get a lot of I get a lot of therapy. I really do. And I feel like it's another it's a job of mine, it really is to be okay. Like because if I didn't have that, then I wouldn't I don't think I would be okay.
SPEAKER_03Right, right.
SPEAKER_04And so I guess it's therapy with ammona books. Right.
SPEAKER_01But it's also it's also recognizing what you need. Like you're not denying it, you're not saying, oh, I it's on my own, or no therapy is gonna bring back my husband and my kids. So uh therefore I'm not, you know, go like you're you're doing the work. So right.
SPEAKER_04Right. But there are times also that like hmm, could figure out there are times when I have to go back on things that I told her she can't have just because I know that I need the space from her. Like if I tell her she can go away for Shabbos, but then she does something really that she's not supposed to, and I'm like, now you're not going. And then I change my mind again and say, Well, no, you actually can go because I need a break. You know, and I have to know that it's okay to say I need that break, even to go back on what you know, there's contingencies that I have to give her so that she can earn the ability to do it again. But it's okay to say that not to kill myself by keeping her home so that it's gonna torture both of us.
SPEAKER_03Right, right.
What To Say And What Helps
SPEAKER_04And that is work. That's like it's really challenging, or even to know that like the therapist for her isn't gonna be good. And I still have not found the perfect therapist for her. Um, and she wouldn't even want people to know that she needs therapy. Right. Um, and there are a lot of organizations out there for kids who have been through so much grief, and really, really unfortunately, she doesn't want to be a part of it. And it's I feel so bad for her. I try to push her into it, but not push her. Um, I I wish she had somebody else that she knew naturally, that wasn't like a forced thing that's been through what she's been through so that she can have that relationship.
SPEAKER_01Right, right.
SPEAKER_04And I haven't found that yet, you know.
SPEAKER_01Um was writing in the the story in the army, was that like therapeutic for you?
SPEAKER_04It was both. It was therapeutic and really, really hard. Yeah, it was really hard because it was going like you know, you kind of protect yourself from your grief, right? You can't walk around with all that grief here all day, every day. You just can't, right? It has to go someplace else. You have to let it go in order to be able to function, right? But it's always deep down, it's always in there. So bring writing it brought it all back to the surface. Um, and actually, it was the complete broccolo for the first time ever she wanted to go to sleepaway camp last summer. So when she was in sleepaway camp, I wrote the entire thing.
SPEAKER_02Wow.
SPEAKER_04Because I wanted to be okay, and what I would do was I would write a little bit and then I would go on a hike. Or I would write a little bit and meet somebody for some or or do something that was good for me, just to be able to get it out there because instead of letting it like all like stew and get horrible, you know. Right. Um and I actually do want to expand it into a book, but that means going back into it again.
SPEAKER_03Right, right.
SPEAKER_04Um, I also don't have so much time right now because I'm in a master's course, but you know, I would like to get it done also just to get it out there.
SPEAKER_05Are you getting a lot of comments on it?
SPEAKER_04In the magazine or in general? In the magazine? In the the actual magazine, I haven't seen so many. Um I do get a lot of comments on it, depending on if people know who I am.
SPEAKER_03Right, right.
SPEAKER_04Like when at Parent Teachers last night, oh I'm reading. I'm like, oh, okay. Or if somebody came up to me in the store and I had no idea who she was, and she was like, Oh, I'm reading your store. I'm like, who are you?
unknownRight?
Jealousy, Heaven, And Honest Truths
SPEAKER_04Like, how do you know who I no, no, not like whatever, not like that I'm so and so and you know, I just didn't ever remember seeing her. So how would she know that it's me? Right, you know, and she goes, Oh, I saw you by so-and-so's house, and I remember that it's you. I'm like, Oh, okay. I'm like, oh, she's like and she goes, and you're so inspirational. I'm like, thank you.
SPEAKER_05What should people say?
SPEAKER_04Like I think of myself the same thing. If I would need a survivor, right, what should you say?
SPEAKER_01Right. It's true. Because also people don't want to be here that they're strong. They don't want to hear that they're special. So I guess if you don't really know the person, like what like what's there to say? No, you're right.
SPEAKER_04Right. Like I think of myself, I'm I'm a very empathetic person, so I'm able to see it from their point of view. Like, what should they say? I'm not insulted, but I'm just like, I get it. I get that that's what you need to say to someone, you know, who's been through what I've been through, because what else should they say?
SPEAKER_05Right.
SPEAKER_04You know, when my it's my kids' yard sites, something that I hate is the nishemah should have an aliyah. I'm like, their nishemmas don't need aliyas. You know, they just don't. They have so suffering, right? But it's an automatic thing for people to say. But someone once said to me that they should be a male at Yoshir. I'm like, thank you. That's what I want to hear. Right, right. You know, but people don't know.
SPEAKER_01How would somebody know that? You jealous a little bit that your husband is with them.
unknownYeah.
SPEAKER_01Such a meek question. Only I would say such a thing.
SPEAKER_04What? What else? Oh, I would say the same thing, by the way. Um, what do you mean? We're filling out my daughter's high school applications, and I was doing work and she we were at a doctor's appointment, so I said to her, Here, you spill it out, sweetie. She goes, Okay, let me look up the address of the cemetery for my father. Totally. Well, because they were insistent, like the I have to call the school because they're making it so that you have to have two parents on this application. Well, what if you don't?
unknownRight.
SPEAKER_04You know, so interesting. Wow. I actually have to call the school because there's something that a part of it that I have to fill out that it just doesn't let you finish it. It's saying incomplete, incomplete. Well, those things don't exist in our world. Wow. Wow. Um, so wait, what did you ask me? I'm sorry. Fun tangent.
SPEAKER_01If you're jealous of your husband, then he's with your two kids.
SPEAKER_04Yeah, I am. And honestly, and he's not here to argue with me about me saying this, so haha. I actually think that he didn't get okay. Can I can I use this as a platform for a minute? Right? His father was nifter from colon cancer. And after his first round of cancer, he didn't get really colonostasis. I honestly think he did it on purpose. He didn't want to live without his kids.
SPEAKER_05Really?
SPEAKER_04Yeah. I mean, although he always said he was not going to go through chemo again, and he did because of our daughter. He wanted to be here for her, but at the same time, he didn't want to fight anymore. You know what I'm saying?
unknownRight.
Final Advice To Grievers And Friends
SPEAKER_01Uh totally. It makes so much sense that it's like scary how much sense it makes.
SPEAKER_04Yeah. So like if I go to the cemetery and I see him next to them, I'm like, still not fair. You know, I'm like, I hope you guys are all enjoying yourselves up there, leaving me watching, laughing at me down here, trying to get everything done the right way. Or I'm like, haha, I'm throwing out your tools. Sorry. Well, he had a lot. He had 300 screwdrivers. Nobody needs 300 screwdrivers when you have two hands. You know, I lined them up actually from one door of my house to the other and I took a video. Totally.
SPEAKER_01Okay, so I guess should we end off with any like any messages that we anything important that we didn't talk about that you want to leave off with?
SPEAKER_04I'm thinking of people listening to this. So who are the people the people who listen to this are people who've been through grief or people who want to help people who've been through grief? Both. Both. So I would address both.
SPEAKER_05Okay, so the people who have been through grief you need to help yourself live with it.
Closing And How To Get In Touch
SPEAKER_04You need you need to be okay, even if it's okay not to be okay. More often if you still have people around you, they want you to be okay, even if it's not her. But it's okay not to be okay privately, I would say. You want to cry in the shower, you want to cry when it's a really bad day, go for it. You want to yell at the person driving in front of you because they're driving too slow because you know everybody in your family died, go ahead, you know. But to you your your other kids need you, your family members need you to be okay. Even if you want permission to not be. And for the people who are trying to help the people that are grieving, you need to be able to give them the space to grieve, but also give them support and check in with them and see how they're doing. That's what hurt me the most was the people who kind of didn't check in with me. And unfortunately, I lost relationships in the past two years because of it. Because they just didn't start checking in with me and saying, Are you okay? And I'm like, How can you do that? Like, we are we're not okay. We're crazy. We're we've been through hell, you know. So please just send a text. And and actually, but it's so interesting. There are people out there. There's somebody that I happen to know from my community from a long time ago who sends me a good chavis meme every single week.
SPEAKER_01That's so nice, you know.
SPEAKER_04But I think he just wants to make sure that I know that there's somebody out there thinking about us.
SPEAKER_01That's so nice because you know that someone's thinking about you, but no pressure.
SPEAKER_04You don't have to respond, you don't have to like you know, you quite and I don't respond every week, and there are weeks when I send one back, and there are weeks when I send a smiley face, but it's just so nice, and that's the most meaningful thing.
SPEAKER_05Right.
SPEAKER_04You know the people who are still there who still listen. I'm like, I can't believe all my friends are still listening to me.
SPEAKER_01I'm sure you have a lot of good friends because you just seem like that.
SPEAKER_04I mean, Barakasham, we wouldn't get through it otherwise. Our friends are our family, and they're amazing.
SPEAKER_01Well, thank you so much for coming on. I really, really appreciate it.
SPEAKER_00Thank you. You've just listened to an episode of the Grief Journey Podcast with Miriam Ribiett, brought to you by Mayrim. For more episodes, visit the Mayhrim website at www.mahrim.org. Help us reach more people who might benefit from this podcast. If you know someone who could find it helpful, please share it with them. If you have questions or comments for the speaker, or if you'd like to suggest a guest for the podcast, we'd love to hear from you. Email us at releasefromgreef at mahram.org. We look forward to having you join us in the next episode.