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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. Aliza Bulow: Beyond the Silence: Healing After Suicide
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The world of mental health is ever-evolving, deepening our understanding of the brain, the causes of mental illnesses, and their treatments. In this podcast, we share the poignant story of Mrs. Aliza Bulow, whose beloved son Doni tragically died by suicide. Although his loss was devastating, it did not come as a shock. Doni had battled with suicidal thoughts for years, and his mother is grateful for their beautiful, loving relationship and the support she could provide during his struggles. She always hoped for a different outcome but acknowledges that 'He was born when he was supposed to be, and he died when he was supposed to.' If Doni were born today, perhaps better treatments might have been available. However, this was the journey Hashem chose for him. When the rabbi asked, 'What should we tell the community about Doni's cause of death?' both Mrs. Bulow and her husband insisted on honesty, aiming to dismantle the stigma surrounding suicide. It is a mental health issue, and concealing it only complicates the grief. There is no shame in it, and through this podcast, Mrs. Bulow continues her mission to bring this message to light.
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Questions or feedback? Email me at: podcast@mayrim.org
Welcome to the Relief from Grief podcast, hosted by Mrs Miriam Rebiet and brought to you by Mayrim. Mayrim is an organization dedicated to supporting families who have experienced the loss of a child. It was founded by Eloi Nishmat's, nechama Liba and Miriam Holman. Despite her illness, miriam devoted herself to addressing the needs of parents and siblings grappling with the immense pain of losing a child. She felt this loss deeply, having experienced it firsthand when her older sister, nechama Liba, passed away. Mehrim continues to uplift and expand on the work Miriam began, a mission carried 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 relieffromgrief at mayrimorg.
Speaker 2Hi everybody. Thank you so much for joining me here on the Relief from Grief podcast Today. I am very happy to welcome Mrs Elisa Bulow to the podcast. She's the founding director of CORE, which is an organization that connects and supports women that serve the CLAL, such as CLAL teachers, rebetzins and lots of other things right.
Speaker 3Yeah, we have our Kedisha members, heads of not-for-profits that serve the Jewish people. Classroom teachers, adult educators. We have all kinds of training and support programs for women who serve the clout in many different ways.
Speaker 2It's amazing. I know that you're like growing bigger and bigger and bigger. It's amazing to see what you're doing. Okay, so should we start off a little bit with your story.
Speaker 3Sure, which story would you like to hear? Well, I thought about your son a little bit, but if you have other exciting stories, Well, I would say, let's see, I definitely lost a son, there's no question about that, but I also lost two grandchildren, so there's all kinds of grief that could be there. So it's interesting it's called Relief from Grief your podcast and yeah, maybe it's how you deal with it, or the relief from the heaviness of it, and it's part of all of our lives.
Speaker 2So I'll share with you. That's always interesting to me. Like I appreciate is the word appreciate when I speak to people that lost children and grandchildren, like Barbara Ben-Susan came on and Mrs Alyssa Felder. She didn't go live yet. Maybe by the time this goes live she'll be live, but she also lost a child in a grandchild, so maybe we'll have time to get to that. But I think the point over here is that we really want to talk about suicide deaths and how that impacts the community and how we could try to take away the shame a little bit, Okay.
Speaker 3So I could say I'm experienced in grief. And then there's the my son died by suicide. So what does that mean? What does that mean for our family? What does that mean in the community?
Speaker 3You know, it's very interesting that two years before my son died and he was 19 years old and he had mental illness from a very young age he wanted to die. And it was very weird talking to a five-year-old who would say to me at the time that he was five, we lived in Long Beach, long Island, near the ocean, and he would say I just want to walk into the ocean and keep on going. It was very clear from a very young age like I don't want to be here, and he couldn't even articulate it. He was too young to articulate his feelings. But as he got older he was very clear Like I never asked to come and I don't want to stay. Why should I be here? You made a choice with Abba to have another child, but I didn't make a choice to be your child. I don't want to be here. And so I definitely raised a child that I was pretty sure would die by suicide. For me it wasn't a shock. It was something that I that hung over the course of raising him Um.
Speaker 2I interrupt you a second. We have to talk about the phrase died by suicide, right? Because I know, when I was writing the section of the book of you know the you know the book that I'm working on, um the suicide section, and that's when I got my lesson that it's died by suicide and not. What did I used?
Speaker 3to say Committed suicide.
Speaker 3Not committed suicide. People have worked with the word committed. They don't like the word committed suicide because it sounds like committing a sin or committing a crime. So they don't want to say committed suicide for the person that they love who died by suicide. And right after Donnie died, the language that I was seeing was people would say completed suicide because they wanted to stick with the C. But I didn't like that either, because there's suicide attempts and but this person completed suicide, like I much prefer the died by suicide. I mean that does mean suicide literally does mean killing oneself. The side is killing like homicide or other sides, insecticide or herbicide. Side means kill whatever you're killing insecticide for insects and herbicide for plants, that's for dandelions. So suicide is yourself. Yeah, died by suicide. So why and I think that's part of the stigma that's around it is why does somebody die by suicide? Why would somebody take their own life? What's up with that? Is that mental illness? Is that anger? Is that selfishness there's so much about? Is there's so much about the dying? Is that cowardice? You know, why do people die by suicide?
Speaker 3And we have so much conversation and in our, in our texts, in our sacred texts, you know, in the, in the Gemara. It talks about, um, a boatload of children who are being, who were captured from Yerushalayim, captured from Eretz Yis, israel, and then taken. They were in the boat on their way to Rome and they all looked at each other, all these young teenagers, and they noticed oh my gosh, we're all good looking, guess where we're going. We're going into slavery to be used for our looks and used. And they decided together, collectively, to jump over the side of the boat and not allow that slavery, which is dying by suicide, right, which maybe you would say. I mean and this is where there's discussion in the Gemara was that mutter or not? They knew that they didn't want to be over on Giloy Araya, so they didn't want to have to be sold as slaves for that. And that's one of the things, that that's one of the three things that you are. You should die rather than do that Avera. But it was before they did the Avera, before they were confronted with the Avera. Was it mutter to have the understanding that they're headed towards that and kill themselves before they got there? Or should they have done it in the moment when they were first sold and then requested to do whatever terrible thing they would have to do. Like you know, anyway, there's all kinds of what is it? And then we have assisted suicide today, where people like they know they're going to die and would they rather die with dignity or by choice before they die of the suffering or whatever. There's all kinds of conversations about it. Or you're in the Warsaw ghetto and you're afraid of what's coming.
Speaker 3Did people die by suicide? Look, there's a lot of things are coming out. And was there suicide in the Holocaust? There was certainly. It seems like there was some significant suicide after the Holocaust, where people made it through all those years and then made it through with hope and then at the end, when they went home to see their families or to reunite and they saw everybody's dead. That's when some people killed themselves because they're like now there's no hope. Like at least in the camps, we had hope that our lives would get back to normal, but now that we see that our house has been burned down or taken over by the neighbors and our family is dead, like now, there's no point in hoping, and so there's no point in living. Now, there's no point in hoping and so there's no point in living.
Speaker 3So what is suicide as a whole? Big question In my life with my child. It was very clear that there was a mental illness that was deep and abiding and long-term, pervasive, chronic, of not wanting to live and not being able to understand it. You know my name's Elisa, which means joy, and it actually refers. We have a lot of names for joy in Judaism, from Simcha to Gila to Rina. Elisa refers to a specific spiritual kind of joy, which is maybe even a resilience, because if you have that spiritual root, then your joy comes from knowing that the direction is good, even when it's challenging, even when it's painful, but, like Hashem, directs the whole thing. So that leads to an Elise kind of joy.
Speaker 3So, but as somebody whose inner root is joy, I couldn't understand what my son would describe to me Like I wake up every morning. I'm like Modani thank you, hashem, I love being alive, I can't wait to start the day. And he would wake up in the morning thinking really, god, again, you woke me up again. Why don't you just take me? I don't want to have to kill myself, but I don't want to be in this world, so just stop waking me up already. That was his conversation in the morning with Hashem. It's like forget the moda ani like frustrated ani I know for sure that he like he told you that he would say that when he woke up.
Speaker 3Yeah, and it was really frustrating. He's like why, why? Why am I in this world? Why did you bring me here? Why am I here? I don't want to be here, and he didn't want to have to take steps to take himself out, that he for sure didn't want to be here, desperately did not want to be here, wow, so, um, right, so I, in a way, I had the opportunity in terms of the grief part, as the mother who is in conversation regularly with this, I had the opportunity to, in a way, pre-process or rehearse some of the grief that would come. You know, what will it be like? Like I hope he doesn't do this and we're going to find the right therapist and we're going to try the right medications and we're going to switch schools and we're going to switch whatever it is, all the different things over the years, whatever we could do to try to help him.
Speaker 3And still the worry, like when I go downstairs to wake him up, will he be awake or not?
Speaker 3Will he be there? Will he be there? Like was a constant concern that I lived with, and I didn't even realize how much I lived with it until Shiva, when all the kids were sleeping in the house. You know, everybody came home for Shiva and the house was full and the night was quiet. It was two o'clock in the morning or so and I heard a big bump in the night and I woke up. I heard it.
Speaker 3I went back to sleep and I was like I don't have to worry about that big bump because it's not Donnie, that's for sure. Like I don't have to. Whatever that was, some other kid got up, some other kids making a snack, some other kid went to the bathroom, whatever it is, I don't have to worry about that because my worry is over. And only then did I realize, oh my gosh, every night I was listening, every night I was worrying. Every night I would follow up on the sounds that I heard because I was worrying and now I don't have to, now it's done, now it's over and I don't have to have that worry. But it was a worry for a long time did that feel relieving or didn't make you.
Speaker 3It was a relief that it wasn't a worry anymore. It was definitely a relief that wasn't a worry. And what else was interesting about relief in a way a guilty relief was I had a few friends with mentally ill children and I and we're sort of a sorority of the suffering mothers with mentally ill children we could understand each other and how difficult it is to have this child who probably isn't going to get married or is embarrassing in the firm community. Or the way they dress, the way they talk, the way they smell, the way they eat, the way they, whatever, it is right, all that. I mean I had one. My son did not smoke, but I had one, um, smoke cigarettes. But I had one. That's a friend whose child did smoke cigarettes. I mean she would wake him up before Shabbos to make sure he could smoke so that he could get through Shabbos without smoking.
Speaker 3You know it's like it, just but Shabbos without smoking. But anyway, I felt like I left that sorority of the suffering sisters when Donnie died, because now I was in a different group, the mothers of dead children rather than the mothers of mentally ill children. So in a way it's weird to say, but I sort of felt like an older single that got engaged, like I left your group, I graduated, I'm not part of you anymore. I'm not in that long-term struggle with you anymore. I'm in a different group. Now I'll have my own struggles in this group, but it's a different group. I left you. So, yeah, there is that.
Speaker 3Did you lose touch with them, these mothers? Yeah, I'm not in as much. I mean, I'm still like summer camp friends, you know. Like, do you talk to them over the year? No, and when you see them again, can you talk about it? Yes, but it's different because I'm not part of that group anymore. I'm not well, I don't have updates on how difficult it is that my child is still not X, y or Z or still is doing X, y and Z. So that's not it. I know right where he is. He's safe and sound, waiting for Tresa Mason.
Speaker 2What were these other mothers like when he was Nifter? Was it from their end like I'm a little bit jealous of you, you don't have to deal with this anymore? Or was it they're bringing up their own fear and pain?
Speaker 3It's such a good question. I don't think anybody would very few people, I think could articulate to themselves that they might be jealous. Right, that's probably true, and they certainly wouldn't say it out loud. It's very scary to say that out loud, you know, because you don't ever wish that your child was dead, even if sometimes you might wish that the threats would end, right, yeah. So I think there probably is some. I think there is a jealousy of the relief. There is that. I think there is that Because there is a relief You're not worried anymore.
Speaker 3I don't have to carry it anymore, I don't have to worry on every trip that I leave the house, like, will I come back and will he be dead? Will it be now? Should I leave him now? Should I, can I? I scheduled a trip, but can I take the trip? Once I took him on a trip with me, because it was just a visiting campus, mccarvin then and I just introduced him. As you know, my son's coming with me, he's traveling, he has the time, so here he is. But really it was like I can't leave him home and I have a trip I have to do, so let's go together, we'll have fun. But like, oh my gosh. Yeah, so, yeah. So I did.
Speaker 3Again, I did have the advantage of not knowing for sure, but very strongly wondering and worrying if he would die by suicide.
Speaker 3So I had the opportunity to pre-process a lot of the grief and the loss and even though I didn't know, even though and I was surprised in the moment that, like this is the moment I was waiting for for so long and it definitely feels different than I thought long, and it definitely feels different than I thought.
Speaker 3And I also thought about all the parents who, like of sick children, who say to themselves or even sometimes that lot, I wish I could take on your pain and I wish you would be healed, and like you shouldn't have the pain and I and I'll take it. And I sort of feel like that happened, like I didn't say that to him, but he died and was out of pain and he transferred the pain to us. You know, we now have to walk with that pain. He doesn't have it and we do forever it's ours and the whole family split it up a little bit and I have a different pain than my husband has, than each of his siblings have, but everybody's carrying a piece of the pain that he was able to shed at his death and we inherited it, and we inherited it and we did what.
Understanding Grief and Suicide Stigma
Speaker 3And we inherited it. Oh, we inherited it, yeah, yeah. So, and it manifests differently, in different ways in each one of us and over the course of time. It's 11 years already, so it's different now than it was in the beginning, but one of the things that seems to actually, I think it's resolving a little bit now finally at 11 years, but for sure for the first five, six, seven, eight, nine years, sleep disturbance is one of the things that parents of deceased children experience regularly, Like just their sleep is ruined and it's hard to know.
Speaker 3Is that because I was a grieving mother? Not that I thought about it all day long, but just the sleep was bouncy and difficult and not restful and like I was, like I didn't look. I never anyway looked forward to going to sleep because I look, I love waking up and starting my day and getting going, I'm so excited. Sleep is like oh, you're in the way of like doing stuff. So that was always frustrating. But anyway, being a grieving mother, I have read some things about grieving mothers and many grief symptoms, quote unquote, clear up in the first five years, but apparently sleep disturbance doesn't. That's something that lasts.
Speaker 2Five years isn't so long? No, it's not.
Speaker 3But I'm saying, for let's say here's a word that I learned, for grief is grief bursts, like cloud bursts, like you could be going along in your life and all of a sudden there's a grief burst like that. You see something, you smell something, you taste something, you hear something. You're like and the tears start to flow. That's a grief burst, right. And then it could happen because you heard a song or whatever it is, and so there's grief bursts those are much less intense and are much, much, much further and further between as the years pass. So that's, I would say that's what they're talking about, in a way of symptoms clearing up.
Speaker 3Like you know, in the initial stages of grief, like in the initial, like everything, all that I felt like not that I had experienced this ever, but I've read about it I felt like I had a hangover, sort of like. Like going to the supermarket it was too loud and too bright and people moved too fast and like going down the aisles and thinking, oh, I should buy tuna fish Cause we're almost out. Cause he loved, oh, and I don't need tuna fish Cause he doesn't need tuna fish anymore. Oh, I should buy him a Snapple. Oh, we don't need Snapples anymore Like that was hard, but also like there were too many people there, like it was just too much, or like Some of them even were smiling or laughing.
Speaker 3I know, like it was just, and how can they just go on with their lives? So there was that. So there was like a sensory overload for the first several months, like every time going out with sensory overload, that resolved. And then, like you know, learning the laughter and getting and enjoying life and not feeling guilty about it. So that also resolves. But the sleep really stuck for a long time. Wow, it really did. It really did so.
Speaker 2Um, so let's talk about. I'll tell you what I want to talk about. I want to talk about number one, like the stigma of it. I know that you, you know when, after, even after when your rev wanted to, you know, tell you, he'll help keep, he'll help you keep it a secret. So I want to talk about that. And I also want to talk about, like when we spoke a while back, you gave me just such a clear like understanding of how suicide today is really almost always mental illness. You told me about the girl from Africa, so I found that very like interesting.
Speaker 2So I guess, if we could, you know, talk about those two points.
Speaker 3Okay, great. So first of all, we do have a stigma in the firm community and if you look at the Maurice Lamb book on death and dying not on death and dying, jewish laws of death and mourning the chapter in there on suicide is very sad for the parent of a suicide death Because it really talks about the halachas of suicide and their burial. They're not buried with tachrichem or with a matzeva or with kel malai, rachamim or with it. They don't have a yard site. They're not. I mean, they're buried, they're not. None of that is afforded to them. And yet in the chapter it does say but you should treat their family with compassion. There's no shiva even you should treat their family with compassion. Okay, that's not the case today. The halachic reality today is different and that's for Rabbanim to discuss and I'm not here as in that. But I will just say that the halachic reality is different today and everybody should ask their own child. But in general, of course, we still treat the family with compassion. And in general, suicide deaths, people who die by suicide are still buried with everything. They get a tahara, tahriyachema, everything, a matzeva, a yarzeit, kel malerach, hamim, the whole shebang and a sheva full sheva. Why? Because we do have a different view in general of why people die by suicide, or understanding of the mechanism of death or that causes death is different, and we do understand that, not in every case, but in many cases and most of the or that causes death is different. And we do understand that not in every case, but in many cases and most of the cases that we experienced today, certainly in this country at this time that it is mental illness that causes that death. Because if in this country, at this time again, distinguished from other parts of history, where we're not subject to slavery, where we're not subject to that kind of kidnapping, where even illness can be made more bearable by pain medications and things like that, where we have enough food, people are not starving around us, we have enough clothing, we have homes, basically we're safe and secure, well-fed and everything who wants to die in those circumstances? Only somebody where it's really broken inside them.
Speaker 3And that's where my muscle came, my made up story, which is a true story. It could have been true story. You know, stories are true because they could have been, they should have been, or they or they. They actually were.
Speaker 3And so here's a could be true story, but it is a true story of, let's just say, there's that 16 year old girl in Africa who's living in a village when the militia comes in and kidnaps her 10 year old brother and makes him into a soldier, pressed into, given a gun and made into a soldier, and her parents are killed in front of her and her younger siblings are burned in the hut along with her parents' bodies, right when she hears the children screaming as she runs. She's been captured but escapes because she knows she'll be raped and she runs for her life. And she's running and running and running and running from that village with nothing behind her, because her parents are dead and her younger brothers taken and her siblings are killed and she has no place to go and nothing with her. And she's running barefoot through the briars and brambles because she wants to live. Because she wants to live. She doesn't know how she's going to do it, she doesn't know where she's going to, how she's going to make it happen, but she knows that she wants to live. The drive for life is so strong that impels her to run for her life and her life is terrible. In that moment She'll hopefully make something good of it. You know, maybe she's going to grow up and be another Ayaan Hirsi Ali, you know, who like, learns and is strong and can change the world. But meanwhile she just wants to live.
Speaker 3So if the drive for life and you know there is that girl in Africa right now, as we speak, she exists, if her drive for life is so strong, in those circumstances, somebody from our families, safe, secure, loved, fed, cared for, educated if they want to die, it's only because something is so broken inside them, so broken that we see that as a fatal illness. It's fatal. It killed them. And just like we don't blame a pancreas for not working in somebody dying of diabetes, or we don't blame an immune system for not being able to conquer the cancer, even though we gave it our best shot with all the chemotherapy or surgery that we have at our avail. But when somebody still dies of cancer, it's not their fault, right? They still get to be buried properly.
Speaker 3So the same thing with suicide deaths today. Look, we do our very best with all the mental health interventions that we can muster and all the medications that we can find and all the school shifts that we can find and all the love and care and support, therapy, et cetera, that we could figure out. But if they die because something's so broken inside them that we can't fix, it's not their fault. So not that anybody should do that, and anybody who's hearing this, who's feeling suicidal, should definitely reach out for help. And anybody knows, anybody who feels suicidal should be willing to talk to the person about it, because I think there are avoidable suicides, there are humps that people could get over and there are also chronic illnesses that they can't. You know. But even with a chronic illness, you can lengthen the life, right? I mean, I think about that with Robin Williams. People say, oh, he lost the battle. I'm like, oh my gosh, look how many battles he won. I don't know who Robin?
Speaker 3Williams is. Robin Williams is a famous, beloved comedian in American society. Famous did so many roles. He played Aladdin in. He played the genie in Aladdin in the Disney Aladdin. It might be one role you've seen him in, but he played a lot of things all across the board. But he struggled with depression his whole life and in the end he he died by suicide and people were devastated because he was a very, very beloved comedian and in general American society really was a hard blow for like a lot of fans and everybody felt like, oh, he lost. And I'm like, well, look what he won. He won decades. He won decades of his life. He made it for decades, he fought valiantly and won decades more of life.
Speaker 2He could have died in his twenties.
Trusting in a Higher Plan
Speaker 3He died in his sixties oh wow, so.
Speaker 2So if a parent is listening to this, a parent that lost a child by suicide, what could you tell them? That they shouldn't feel guilty, that, oh, maybe it was just a hump and they could have done more for their child?
Speaker 3You can't. So, first of all, a parent who's listening to this, I hope, is a parent that believes in Hashem and God. For those of you who are listening, who don't understand the Hebrew, so here's a therapeutic riddle for you. What's the difference between a Jew and God? God knows everything and a Jew knows better, right, okay? Well, we really think we do, like we're pretty convinced we do, which is why we tell God so many. We have so many eights for God. We have so much advice for God in our prayers. We're constantly telling God what he should do right On behalf of the world to make it work, right for our kids, for our spouses, for our schools, for our communities. Like, we have a lot of advice for God. If we actually remember that Hashem does no better than us, then we could trust Hashem to have matched that soul with that body. I mean, he matches our own souls with our own bodies. That's the first shidduch that Hashem makes is our soul with our body, and it's a perfect match. Our soul needs the body that we have, with all of its strengths and imperfections, in order for our soul to have its best journey, because everybody only has a journey. We're all going to die in the end. There's always a beginning and an end, and the middle is how do we use our body and the environment that we're in to achieve the best soul growth while we're here? That's the whole thing right. So we have to trust that for ourselves. We have to trust that for our child too. Hashem, put that body and that soul together and then put that combination of body and soul into our family to be that sibling of those kids and my child.
Speaker 3I was the right parent for them. My spouse is the right parent for them. They're the right child for me. This was the right environment. We had the right tools that are available. We didn't have all the money to hire all the things. We had the money we needed for this child at this time. We didn't have all the therapists available. We had the therapists that were supposed to be the ones that were for this child at this time. I mean, just think about somebody who, in the 1960s, when they get breast cancer, it was a death sentence. We didn't even say the word cancer in the 60s right.
Trusting in Hashem Through Loss
Speaker 3I mean, I do, but a lot of people still don't why? Because they're so scared of it. It's going to kill you, so don't even say the word, don't give it any energy by even mentioning the name, whereas today it's not a death sentence. You find out you have cancer. You're like okay, so what do I have to do now? I might need surgery. Oh, I might need medicine. Oh, my hair might fall out, so I have to buy a new wig, okay, okay, like. That's not pleasant, it's not. But you're not thinking you're gonna die. You're thinking I'm gonna have a hard time for a couple of years, right so, but that's only today, in the 1960, 1960s. If they died from that, you don't look back and say they should have been born in the 60s, they would have lived. No, that's not the hashkacha. They were born in the 60s for a reason they were supposed to die that way. And there's gonna be new things that help, like right now there's deep brain stimulation that's going on to help medication, resistant depressions. But that wasn't available for Donnie at the time I did. I contacted some people who were in charge of some of those clinical trials and I was told it's not for people who are actively suicidal. I'm like really, because why Try it If he's going to die from that? Like better than this, like really. But I had to remind myself afterwards, as that was advanced after his death, that like it wasn't the hashgacha that he should have, that availability. It wasn't. It wasn't designed for him. He was born at the time he was born and died at the time that he died and that was the hashgacha. He had the right parents and the right money and the right therapists, even if they were difficult therapists who said the wrong things and did stupid things. But they were the right ones for him because Hashem brought them together. He made the Shadokhan and he knows the right path and our family is supposed to go through this and he designed it. So it really is.
Speaker 3A Be'yadot of Kidruchi is one of my big mantras. Like, just rest in Hashem's hands. It's the end of Adon Olam for anybody who's not recognizing those words. But really you just rest in Hashem's hands. I'm going to place myself in Hashem's hands when I'm awake and when I'm asleep, not just my soul in Hashem's hands, actually my physical body too, everything about me in Hashem's hands and with Hashem I don't have to be scared of anything in Hashem's hands and with Hashem, I don't have to be scared of anything. Adoshem li v'lo ira Sorry that, adoshem li v'lo ira I don't have to be scared of a thing and I don't have to have the recriminations either. You know, I don't now.
Speaker 3I mean it's hard and that is part of the sleep disturbance right after that kind of a death is like you're oh, maybe I should have this, maybe I should have that, maybe I should have this, maybe I should have that. And I read a lot of books in that time that made me wonder oh, if I would have known this. Oh, if I would have understood that sign, oh, if I would have done this like, but I didn't know that. Then right, and that was the hashgacha too, right, you know.
Speaker 3And just to really trust that Hashem gives you what you need. Yes, you should try to stretch yourself, yes, you should try to learn, but can you fix the whole world? You can't. Can you fix your own child? Actually, you can't, you can't. All you can do is your very best with the tools you have in the time that you have, and then you have to release it.
Speaker 3There's no point, I mean, for me, I feel like.
Speaker 3There's no point in letting that take over my life.
Speaker 3I have the rest of my life to live. It's a piece that I live with. It's a growth. It was a whole growth workshop for the 19 years that I had him and that got more intense at different times and, having lost him, also as part of my ongoing growth workshop, and creates new connections and new insights and new challenges and all along the way and that's the hashgacha too Hashem set me up for what he wants me to do in this world and that was part of it. And all I can do is say, hashem, you gave this to me. Please help me live with it. Please help me do the best that I can with whatever you gave me. So that's what I would say to parents who are feeling so guilty is feel it and then release it. Feel it first to say I feel really guilty that I didn't mortgage my house to send my child to that treatment program, but then we'd be on the street and we'd still have a dead child, so I'm actually thankful I still have my house. You know something?
Speaker 2less like I feel guilty that I gave him the car. I should have known that he's going to drive into the ocean or whatever.
Speaker 3Right, but you didn't know Right, but you didn't know you know. So then you can work with it Like I, I should have known. Well, you didn't know. So then you can say switch it to I'm so sad that I didn't know Right. Right Instead of I should have, because if you should have, you would have right, because Hashem's in charge of that. If you should have, you would have right. That's just sadly cold turkey.
Speaker 3Hashem gives me everything that I need. He also makes every need that I have. It's the other way to read that same, those same exact words I wouldn't have a need if Hashem didn't give me the need. I wouldn't have a need if Hashem didn't give me the need but also give me everything that I need. So if you shoulda, you woulda, but you could just feel sad. I wish I would have known. I wouldn't have given him the car. But then what you know, who knows? But I did, and he made his choices. I can't be responsible for his choices, I can only be responsible for mine.
Speaker 3And so now here I am, after my child is dead. Let me be responsible for my choices. Now, how will I treat my family? How will I treat myself? How will I build my relationship back with Hashem Maybe if I have a little pause in that relationship, because that's very common to have a I don't feel like talking to you much Hashem kind of period in your life. And that's okay. It's okay to have a little pause in communication and recognize it as a pause Just say, look, I don't really want to talk to you right now. Give me a very hard time and I need to digest this a little bit before we have our next conversation, and just saying I don't want to talk to you right now shows you still have that connection.
Speaker 3Yeah it does.
Speaker 2It does. So after Donnie was nifter, was your, did your your grandchildren died half far apart.
Speaker 3So I had a granddaughter, a twin baby, two week old twin baby girl who died six months before Donnie died. Oh wow, and then and then, actually she died in November. Donnie died in May and then my father in she died in November. Daini died in May and then my father-in-law died in October, ereph Sukkos. So my husband lost three generations in one year.
Speaker 2Wow. Should I ask him how he managed or should I ask him how he he had a hard time managing.
Speaker 3He's still in his pause with the show, but she didn't pause at the time. He really paused it, I would say, after our grandson died three years later and that was a year-long battle with migrating partial seizures of infancy, which is a terrible seizure disorder that just basically spontaneous start, drug resistant. Even though they could give him morphine to make him more comfortable, they couldn't stop the seizures and they just basically had to wait until his brain sees out a terrible way to die.
Speaker 3Take a whole year to just have seizure after seizure, after seizure until you brought he can't stand it anymore and it just expires, so, um.
Speaker 3So my daughter went through that valiantly daughter and son-in-law and um, and my husband kept with the updates and the doctors and the everything-law and um, and my husband kept with the updates and the doctors and the everything, but at the end he was like, really Like it's one thing to take our son who lived and had a hard life and a good life also. What's another thing to take our daughter's son, who only had a hard life, he never had a good day, you know, and and that was very hard on my husband very hard day, you know, and and that was very hard on my husband very hard.
Speaker 2But what do people say? People would say like he only had a hard life. Now he doesn't have a hard life anymore. Right, like, find the comfort that he's not suffering anymore.
Speaker 3Oh, yeah, Except for then. But if you're going to go that way, I'll just say the darker side is really God. You would bring a child into this world just to torture him every day for a whole year. What was that about?
Speaker 2Is it harder to see your grandchild in pain or to see your child in pain over the pain of their child?
Speaker 3Right, it's very hard to see your child in pain. I mean, I think it was harder to watch her in that pain than to watch Donnie in his pain. You know so, the child that we lost in the pain that he suffered with, he did suffer, but to watch our daughter suffer with losing that child was was a different kind of pain. Yeah, yeah, Just, it is a very different kind of pain.
Speaker 2And it was interesting when so that her she had a five-year-old and a almost four-year-old at the time, five-year-old and a three and a half-year-old when he died.
Speaker 3So the five-year-old was there. How old was the baby when he ended up? The baby was one year old exactly Wow when he died. And then she had a five and a three and a half above him when the Chavar, kadisha, came to the house to take away the baby. So I took the five-year-old. The three and a half year old wasn't there, but the five-year-old was in the room. So I just said come with me into the basement, like we'll sit on chair. I didn't want her to see them like pick him up out of his crib and take him away. So I held her on my lap and we just talked. You know what's happening upstairs and why are they doing it and what's going to be next and what's that can be like makes me tear up a little bit just to think about. But she said I'm really mad at a shem at five, at five. She said that. She said I'm really mad at a shem wow, that he died. I said talk to your grandfather about that. He is so did they? I don't know if they talked about that and they might still, but I'll tell you this. I think this is something to think about in terms of whether it's relief from grief or the continuing pathway from grief.
Speaker 3But here's a thought that I had. So that same granddaughter last year she was 12, or maybe just almost 12 when her other grandfather died of cancer and she wasn't sure does she want to go to the funeral or not go to the funeral? She's like old enough that she could, but young enough that she's not sure if she, you know, like what should she do? So she ended up coming to the cemetery and then she, when she saw the open grave before the Aron got there, she was like I don't know if I want to do this. So she went and sat in the car. So I, but I talked to her cause it was a little while and you know in that space and I talked to her about the river of grief, which is something I made up, um, but I liked the idea.
Speaker 3So I said you know, there's a river of grief that runs through your life. It starts when you're born, when you disconnect from Shemayim and you're born into this world. There's a sense of loss and you cry when you come into the world. Oh, my gosh, I have to be in this world. But I was in the zone of Kedusha and Tahara and I have to come into this world of like physicality. How hard is that? I'm grieving the loss of that. And I said and then there's a river of grief. That's sometime in the background and sometimes in the foreground of your life, but it's always there.
Speaker 3So when you lost your baby brother, you were swimming in the river of grief. Remember we sat there in that chair and we talked about it a little bit. You were taking a swim in the river of grief. And then when your friend loses their grandparent so you're not grieving then, but you might be sitting on the edge of your river of grief and just dangling your toes and feeling their sorrow but it touches your river. And right now you're on the edge of your river of grief with this loss of your grandfather and you're not quite sure how to process it.
Speaker 3It wasn't the closest relationship, but it touches your river of grief. That's what's happening for you. That's why you're having these mixed feelings. It's like what do I do? Do I sit on the edge? Do I take a swim? Do I wade in? Like where should I be in this river of grief? And how is it touching me? Do I want to stand there? Do I want to stand here, like it's, but it's.
Speaker 3What you're feeling is the angst of coming into relationship with your river of grief, which will be there for you always in your life. It never goes away. You just come closer or further from it. Sometimes you forget that it's running in the background and sometimes you come in very strong relationship with it, like when you lose somebody you really love. Sometimes even a pet, you know, can bring you to your river of grief in a different way. So so I like the idea that I came up with just to talk to her about that.
Speaker 3We have, we all have our river of grief, and sometimes somebody else's loss brings us to a place where we could consider a loss that we hadn't considered before.
Speaker 3You know something that like, let's say, a five-year-old loses a grandparent, so they didn't really have a loving connection with them yet. Maybe, maybe they were distant grandparent. But at 15, when their friend loses a grandparent, that's when they realize, oh my gosh, not only did I lose a grandparent, but I didn't have them for the last 10 years. Look, my friend who's 15, got to go on trips with their grandparent. I lost that Right, and so I have to revisit that. Like I lost that, and so I have to revisit that, like I lost that potential. I didn't understand it at five but I understand it now at 15. So whatever it is that, and you feel it again when you're 65 and you realize I don't really know how to be a grandparent like that, because I lost mine when I was five, so I lost the example. So that's part of the river of grief and we revisit it at different times in different ways throughout our life when we understand different pieces of losses that we're dealing with.
Speaker 3And it's all part of that river of grief that courses through our life, that everyone has so you can't leave it behind, but you can come into different relationships with it over over time so do you and your two daughters.
Speaker 2They do you like connect that you each lost a child or each loss was so different.
Speaker 3Yeah, each loss is very different but we do connect. I mean, I lit a candle for Donnie for 19 years and three months, so I still do Friday nights you know he's part of my candle lighting and then both of them had to figure out should they? Shouldn't? They Do they keep lighting a candle for that child.
Speaker 2You mean regular, like by L'Chpenshaw? Yeah, why wouldn't they?
Navigating Stillbirth and Child Loss Stigma
Speaker 3Right. So the why wouldn't they? So why wouldn't they for a one-year-old? Is one thing, why wouldn't they for a two-week-old? Is another thing, right thing. Why wouldn't they for a two week old? Is another thing, right?
Speaker 3How much mothership do you get to own over a stillbirth or over a child who's born sick and will likely die, but you hope won't, but then does. Do you get to claim them as your child or not? Do other people say yes, oh, but they were only two weeks. Yeah, but they're only two weeks, but there were nine months of hope. But there were actually four years of dreams and then nine months of hope and then two weeks of life. Like, how much do you get to own that? So I think that that is its own journey, also in coming into relationship with how much are you the mother of that child, you know. And then, how much do you want to say that out loud when people come to your house and see your candles and say why do you light six candles when you only have three children? Right, or whatever it is?
Speaker 2So then you have to explain it again like, okay, having a stillborn is very painful and very huge and malky. You know clerson felton kind of fiam has, it's very like real. But still the difference is from the people that I spoke to, from having a stillborn even if it's in your ninth month, it's a baby that lived three seconds is world apart. Yeah, like once the baby let out that cry or took oxygen in, it's just it was a real living thing, even if it lived for five seconds. And that's why when you're talking about a two week old, I'm like two weeks is two weeks.
Speaker 3Two weeks is two weeks and two weeks is a lot. One of the things that was helpful for me in understanding the purpose of a two week life of illness or the purpose of a one year life of suffering, is I see them as chesed pullers. They pull chesed from others. That could be their purpose If olam chesed yibaneh, if this world is built on chesed and we need chesed in a way, as the fuel to keep the world going.
Speaker 3So some people's job is to create opportunities for chesed to be that darling little baby that needs chesed, or the baby in the family where the family needs the chesed, needs the meals, needs the rides, needs the love, needs the hugs, needs the tzedakah, whatever it is that they could be somebody who brings chesed into the world through their needs. So I feel like both of those babies were chesed pullers and they pulled chesed out of so many people really in remarkable ways. Who knows, you know, were they born to suffer? I don't think so. Did they need to suffer in order to do what they needed to do in this world? Clearly they did Right. So, but that is where I do trust Hashem to know that he knows the exact cheshbon.
Speaker 3He's not torturing somebody's stomach, no, you know, he knew the exact khezben for why that child had to come in, what they had to experience, what the parents had to experience, what the grandparents had to experience and what the friends of the parents had to experience. You know, each one in its outer rings, some with just a sigh oh my gosh, did you hear the so-and-sos had a baby. That's sick, oh that's sick, oh, that's so sad. Even that tiny bit of suffering, that's all. That's the whole comment and that's all the suffering that person got in their life, three friendship rings away from the center. Okay, they were supposed to experience that little bit, you know, whatever it was, so it's not for nothing. Whatever Hashem does, it's all calculated carefully and for me, I trust in that very deeply, and that makes the whole thing not have to always make sense, because it always does make sense, if you know what I mean.
Speaker 2How often do you have to rework that trust? Or it's like so strong that it never diminishes?
Speaker 3I would say that I've worked at so many times Like I worked at so many times during Donnie's life that it really stood there very clearly for me at Donnie's death. And then I worked at many more times, you know, as Donnie, like in those first few months of really just dealing with the I trust you Hashem, but this is so hard. I regularly would say, look just to remind myself, not that I didn't believe it, but just I would say like Hashem, hashem, kel, rachum vachanon, and I would just stop there, like it's the Yiddish, but I just say those first four like you're, so like I have to put all this into the package of I don't know, like that's your definition, hashem is that you're, and somehow this experience fits into that. I trust that. And so I just said it a lot, just like walking down the street, like rachum vachanen, hashem is rachum vachanen. So I, that was part of like it was part of a walking meditation, of reminding myself and readjusting and realigning on a regular basis.
Speaker 3And then I, just I, I regularly one of the things I did was like when I would feel like Donnie's neshama heavy or the grief heavy, I mean it's just like see his neshama, kind of like a little dove in my hands and I would like just hold it and then, like like a dove, cast it up to Hashem and just say here, hashem, please catch Donnie's neshama. Like that's what you wanted, but like take his neshama and love it Like it's it's by you now, not by me. You entrusted his neshama into my care for those 19 years and then really for the first 13 years and then, like you know, he's in charge after that, but still he was in under my roof. Like I had 19 years of caring for this neshama and now it's your job, hashem. Like my job is over and your job isn't. Fortunately, you could do a lot of jobs all at the same time.
Speaker 2I like the visual of the dove. I always imagine I don't know like a box or balloons or something like that. But it doesn't have to be only the neshama. It could be like my pain right here.
Speaker 3Just for me I'm in too much pain today, or whatever it is Right Just to cast it up, like let it fly up, cast it up and give it back to Hashem, yeah, yeah, so I did that a lot and I think I think all that strengthened it. That's the answer to that question. Like it, it was strong before, but it's like definitely woven tighter into the fabric of my personality and spiritual clarity. Right, all those exercises.
Speaker 2Right Life, you know, makes you always. I don't know how do you say re, weave it into the fabric? It can be so tight, but you constantly have to be weaving it more and tighter and a different color and a different direction and a different I don't know what.
Speaker 3Right right.
Speaker 3So let's just go back to the secret thing for a second, because the stigma we want to talk about that like the stigma in our community. So I think if we keep it secret, first of all that keeps us separate from our community. It will perpetuate our own parental sense of shame, because you keep secrets because of the shame. But then it also not only does it perpetuate your own sense of shame but also then keeps you in a bubble, distant from your community, because you can't be honest. You have to actually lie to keep it a secret. Right, oh, it was a car accident. Oh, it was a heart thing. Oh, it was a heart thing. Oh, it was a whatever thing, right? So you're lying. Who knows how that works with the mitvashak or tirhak thing that we also have. But let's just separate that.
Parental Teamwork in Mental Illness
Speaker 3The point that I want to get to is you can't have emotional intimacy with lies. Lies prevent intimacy. So if you want to have friend-timacy, even intimate friendships or even just clean social discourse with community members, if a lie is mixed into that or if you can't be seen for who you actually are, then you can never feel valued for who you are. If you're projecting something that's not you or projecting a death story that's not your family's death story. So then you know people only are accepting your story and not you, because you've never let them see you or what happened. I advocate for honesty here, even though it's really difficult and even though people might look askance. But I feel like if we can stand strong in our vulnerability and say I did the best I could, and even if right away you feel like I did the best I could, and even if right away you feel like I did the best I could but I failed, or I'm not even sure if I did the best I could and I'm so sad that my child is dead, but if you can stand in that sorrow and even in that sense of failure and let your community members hopefully embrace you in that, even though people will say stupid things like whatever it is like you have more kids or you did you. There's all kinds of stupid things that people can say, but still, on the other side of all of that, in a year or two, the honesty creates honest relationships, which helps you feel actually properly supported and then also leads to others being able to be honest and be properly supported before and after a death.
Speaker 3So what if somebody just has a mentally ill child who's not headed towards death, hopefully, but is mentally ill? If there could be the honesty of like I am struggling with this, it's so hard Like if somebody had cancer. I thought about that, struggling with Donnie and his mental illness. If my kid would have cancer and had to go to the hospital, people would make meals for us and ask how he's doing and daven for him, but not with a mentally ill child. They just look at you and say what kind of a parent are you that you let your child be like that? You know it was all this judgment, so much judgment. Why is he dressed like that? Why does he do that? All that judgment?
Speaker 3I mean I remember once going to a bar mitzvah of Down syndrome child. I have a grandson with Down syndrome but this was before he was old enough to be bar mitzvahed and this child was able to have bar mitzvah and he made a bracha for his aliyah. That you could only understand if you understood how he spoke. It was not like somebody else, hearing a recording of that, wouldn't know what he said, but there was a news station there and so many guests there and it was videoed and shared and everybody's so proud of him that he made it to that day.
Speaker 3And I was thinking, when my mentally ill child makes it to bar mitzvah and makes a bracha, everybody's going to say why didn't he make a seum? Nobody's going to say, wow, that's amazing, you kept him alive to this day. He was able to make a bracha. That's amazing. Nobody's going to film it, nobody's going to broadcast it, Nobody's going to congratulate me. They're just going to say where's his seum? How come you didn't do that too? Or at least that's how I felt.
Speaker 3So that if we could be more honest and I wasn't sharing at that time and most people can't, but still, the point is at this point, more mature, more tried and more mature I can't advocate for that honesty because I think that will strengthen our community and help us carry those. We're really carrying something so hard that we could be the neighbor who at least gives a hug or says how's your son doing? You know, and when somebody can't say Baruch Hashem, they could say Gamz L'tova. I can't say Baruch Hashem on how he's doing, but I could say Gamzul L'tova. I know Hashem is only doing what's good in the world, whatever that is. I trust him on that.
Speaker 2So I think that, for someone listening to this, I think one of the things that I would want a appearance to take away is to not be ashamed of it, to be able to really open up about it and to not take the blame for it, right.
Speaker 3Yeah, I think that's really important is that there's there's not blame, just like there's not blame with diabetes or asthma, you know, okay With asthma. So if you say, why do you have a cat when your child is asthmatic? So then you might say, get rid of the cat, your child's having asthma problems all the time, right? So, but you do your best. What are you doing with your mentally ill child? So, okay, get rid of the difficult teacher or the school situation. That's not working right or whatever. It is Okay, you do your best, but you can only do what you can do.
Speaker 3And then there's no blame after that. There's not, there's just compassion, and I think that's one of the things we have to remember all the time. It's like Hashem we're created in the image of God, created in the image of Hashem, and Hashem is rachum v'chanun. When we talk about the yud gimel midos of, it's never yud gimel midos of ka'as, it's never of anger, it's never. It's never. 13 attributes of anger, 13 attributes of condescension, 13 attributes of whatever it is. It's 13 attributes of rachamim. That's how we know Hashem 13 different flavors of rachamim and we're supposed to live that in this world. 13 different ways.
Speaker 2What if a parent would say to 13 different ways of rachamim and Hashem couldn't find in those 13 attributes enough rachamim that my child should be okay? I must be a really bad person.
Speaker 3Right. So that's where you have to understand that Hashem knows. That's where that therapeutic joke comes in, right? Because that's where you're second guessing Hashem. That's the point of that joke. It's the point of it and that's why it's therapeutic. That's where you can ask the person just privately what's the difference between Hashem and a Jew? Hashem knows everything and a Jew knows better, right, hashem does know better. Somehow this fits into that, but I don't know how yet and maybe I won't know while I'm still alive. But in the end we say in Sherem Ales and Shabbos, azim Ales, chokpinu. Then in those days our mouths will be filled with laughter because we're going to get it at some point, but not now. If we don't see it now, all we have to do, all we can do, is trust that Hashem actually has it stronger than we think. And you know, sometimes I feel like you might look at Hashem and say I don't know what you're thinking, hashem, but I know you are thinking. I know you are.
Speaker 2Right, okay, well, thank you so so much for coming on.
Speaker 3Anything like that we forgot to say. That's important. Before we end, I would say this Okay, one more important piece. I would say this okay, one more important piece. Like if you are dealing with a child who's mentally ill or suicidal, or you have this like heavy thing that you're carrying, there's no blame for you, but there's also no blame for your spouse, and I think that's really important to know that.
Speaker 3Like turn towards each other, to be a team in carrying it is so important, even if you carry it in different ways you don't have to both do the same things or think the same things but at least to be on a team before, during and after. Like just make the choice to turn towards each other again and again and again and be a team in handling it. So important that your marriage shouldn't break up over this, because it's very trying, very, very trying, and you can make a proactive choice. We will grow through this as we go through this, but we'll make the choice to grow through this and grow our marriage. Even during the hard times, like we're going to stick together and be a team. So that's what I would want a parent to also take away.
Speaker 2Develop your team. Does a spouse develop that team if the other spouse doesn't want, like doesn't agree with anything that the spouse is saying?
Speaker 3They might need to be in denial or have some distance, like in our case. It was easier for me to have all those conversations with Donnie and my husband wasn't able to. It was too hard for him, but it didn't mean that he disagreed with having them. It did mean sometimes we didn't talk about all the things because it was too much for one to handle or the other. Okay, so I took on a different role than he took on, but I think that's part of it is to respect the other's needs and capacity and gifts in the whole thing. And sometimes you fill in.
Speaker 3You know, sometimes like let's just say, I mean everybody could, even though it's not always, but most often the wife that cleans the kitchen, motsi Shabbos or whatever but if she has the flu, he's not going to just let the kitchen look like that till Wednesday. When she feels better and can get out of bed, he'll clean the kitchen or he'll get the teenage daughters to help or the teenage sons to help or figure out a way so the kitchen doesn't look like that for days and days. Right, you pitch in when the other one can't and you just have to know. It's with kitchen work, it's with homework, it's with income, it's with whatever it is, it's with rides for kids, it's with handling the challenges in life. You pitch in how you can, and a little beyond how you can, when the other one can't, because we're a team. So you just want to develop your team sense and pitch in as much as you can.
Speaker 2Okay, well, okay, so much, and it should be for Nalia, for Donnie's Neshama.
Speaker 1You've just listened to an episode of the Relief from Grief podcast with Miriam Riviat, brought to you by Mayrim. For more episodes, visit the Mayrim website at wwwmayrimorg. 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 relieffromgrief at mayrimorg. We look forward to having you join us in the next episode.