Mrs. Vivi Deren: Four and Four

"This golus stinks."

It does, says Mrs. Vivi Deren.

Golus is hard. We need Moshiach. We all need Him, and we should all be yearning for Him.

Why?

Because, as one young boy who was battling a serious illness put it so simply, "Golus is hard."

We all know it.

And yet, this podcast is deeply inspiring.

Mrs. Deren has endured unimaginable loss. She lost four children.

But she doesn't define her life only by what she has lost.

"My family has tremendous brachah," she says. "We have so much good."

We still have four children. We have grandchildren. And above all, we have Hashem.

Her story is one of profound pain, unwavering emunah, and the ability to recognize the blessings that continue to exist even in the darkest of times.

YouTube: https://youtube.com/playlist?list=PLsK24OSmIYG_XWzeplhfmb8LJcWKphITh&si=untn3fmHLLaEEFNm

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Questions or feedback? Email me at: podcast@mayrim.org

Transcript

Mission And Introduction

SPEAKER_00 0:01

Welcome to the Grief Journey Podcast, hosted by Mrs. Miriam Riviat 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 with Eloy Nishmas Nakama Leba and Miriam Holman. Despite her illness, Miriam devoted herself to addressing the needs of parents and siblings navigating the profound pain of child loss. This mission was deeply personal to her, as she had experienced such loss firsthand when her older sister Nakama Liba passed away. Mirim continues to honor and expand upon the work Miriam began, with her parents carrying this mission forward with unwavering dedication. If you have any questions or comments for the speaker, or if you would like to suggest a guest for the podcast, please email us at podcast at marim.org.

Meeting Vivi Derren

SPEAKER_01 0:59

Hi everybody, thank you so so much for joining the brief journey podcast. Today, I am very happy to be hosting Mrs. Vivi Vivi Derren, who has quite a story to share. She was actually born in Nashville, Tennessee, to her parents who were on Schliefast, and her and her husband together have been on Schlichast for, I think, ever since you were married, right? In two years of Cala. Well, I said he was in Calo for two years and then we went on Schleifost. Well, for two years and then Anchlefast for many years. And her your husband is now the regional director of Western and Southern New England, which is most of Massachusetts and Connecticut. And I know you said you're also very involved in early childcare, you said, right? That that was a focus for a long time. And now you're a well-known speaker. So thank you so much for coming on. I guess if we could start with your story.

SPEAKER_02 1:54

Okay,

Eight Children And Early Red Flags

SPEAKER_02 1:55

so uh we were married and uh Avshit blessed us with eight children. Our first child was Bar Hashem, he was born healthy, no no, you know, no alarms, no concerns. Our second one Barkashem was healthy in terms of you know functioning, but there was an alarm right from when he was born, he was extremely small. Uh the first one was eight pounds something, and the second one was four pounds four ounces, and no doctors had any idea why. And uh our third and fourth were Barhashem typical, and it wasn't until our second child, that was our son Mendel, until he was he was over three, and our our third child was due to be born any minute then, that we finally got a diagnosis. And it turned out that Mendel and then our number five child, our number seven child, and our number eight child. So four of the eight children had the same uh syndrome, which is a it's a collection of symptoms, which in and of themselves are not a disease, they're characteristics, but one of those characteristics is a high rate of malignancy. So three of these four children did develop malignancy. Mendel had upper respiratory challenges in early childhood, but functioned, he basically pretty much grew out of that. And then when he was past 30, he developed lung cancer. Blumey was she was the next one, number our number five child, she had developed a liver malignancy, and Schleimi, who was the youngest, had developed a pediatric kidney tumor called Wilms.

What Bloom Syndrome Looks Like

SPEAKER_02 3:52

Another characteristic, which is the most obvious characteristic of this syndrome, it's called Bloom syndrome. And it's a an Ashkenazic Jewish phenomenon, but not exclusively. And the most obvious characteristic is extremely small stature. The baby develops normally until about six months, and then continues to develop, and sometimes there are other problems associated, which we did not have developmental delays sometimes, and sometimes heart issues. I'm not even sure. And we did not have that. But uh the small stature is a big thing, and uh for some of them, like Mendel and Rifke, who was our number seven child, had upper respiratory issues. Rifke never did not have malignancy, but she did have extreme challenges respiratory in her lungs, and she eventually had to have a lung transplant, which was successful, and then it wasn't. She developed, which is pretty it's it's common. She developed complications not long after the transplant.

SPEAKER_01 5:06

But how how tall, like how big did they become? Like how big was Mendel?

SPEAKER_02 5:12

Men uh less than five feet. Less than five feet, four feet, four feet something, eight, nine, ten. But yeah, so there there was always that that they had to deal with. And it was the theory behind Bloom's is actually named for Dr. Bloom, whom we actually met him when when Mendel was first diagnosed. He was a dermatologist, and he was this we met him in the late 80s, and he just turned a hundred. But he he was a dermatologist. And why is his name on this syndrome? Because he was noticing, especially in the summer, he was patients were coming to him with very small children who had like a butterfly rash across their cheeks that would real sun sensitivity, and it would be like the skin would be very raw. And he noticed this small stature and he started collecting evidence of it, and eventually people, you know, researchers started looking into it, and and this this was what was discovered. So it was named for him. The theory is that it wasn't really known so much before, because before antibiotics, these very, very small children would this is the theory that they would develop upper respiratory issues in the winter and and not survive. So because, you know, the development of antibiotics, they were able to so the and we worked, you know, the the it was now Blooms is on, I think it's even on the basic panel of Darya Sharon for Jewish genetic testing before marriage.

Genetics, Gene Pools, And Testing

SPEAKER_02 6:59

Uh for many, many years, when Mendel was diagnosed in 1978, he was three in a few months, he was number 88 in the world. Are you serious? Yeah, to be identified, and because people just they just didn't know. Now, I said that it's not exclusively Ashkenazic Jewish on that. I found out a very interesting thing from the uh researcher who we worked with. Uh his name was he was the leading researcher. He had worked with Dr. Bloom, and he eventually, you know, was the lead researcher into Bloom syndrome. His name was Dr. James German, a very kind, very intelligent, compassionate person. And he he told us he's not Jewish, but he said that when you're looking at genetic diseases, he said, like something like Blooms, they have seen it in other populations, not Jewish. Some in the Mediterranean area, Egypt, Italy, I don't remember where else, and said, but it's always, if it's not Jewish, it's always uh an issue of consanguinity, which means that the parents are very closely related. He said with Jewish people, Ashkenazic Jews are considered genetically all considered to be at the level of first cousins. Because yeah, yeah. It happens to be that my husband and I are first cousins.

SPEAKER_01 8:32

You are?

SPEAKER_02 8:33

We are. Yeah.

SPEAKER_01 8:35

Did they know in those days that first cousins could be uh uh problem or they didn't even know that?

SPEAKER_02 8:41

I mean, some people uh were always concerned about something like that, some people were not. I know many, many, many, many people who have absolutely no issue with it, others who have, you know, w with first cousins marrying, others who have issues without any kind of right, you know, relations. So it's but just this idea that genetically because of because of what Jewish history has been, and again, this is specifically I I'm I'm not familiar with the statistics for Svardin, but Jewish uh you know Ashkenazic Jews are genetically considered closely related because we're it's a very, very small gene pool. It's a very small gene pool. So now uh Daryusharan, you know, they they got onto the research and it's part of the panel that people are tested for. Daryisham didn't exist. We we didn't get married, you know, like 500 years ago. We were we got married in 1972, we're engaged in 71. There was no Daryasharm, there was no no testing. So yeah.

SPEAKER_01 9:53

Wow. So so so your daughter Rifki, she was the only one that was lift or not from cancer.

SPEAKER_02 10:02

Right. She actually did develop a a malignancy at one point, which it was like she she would say she beat it. She's the only one who beat it. But it was, they think probably it was a result of the the medications and so on, because a lot of the medications that they use post-transplant, some of them have a risk of malignancy. So she did have something very briefly, it went away, but her her issues were it was it was her lungs.

SPEAKER_01 10:31

It's like so like like child number two or four or three, whatever called up and said, Guess what, I have cancer.

SPEAKER_02 10:38

Like I have to go it doesn't it doesn't it doesn't quite work that way, or it didn't work that way with us. Um the first one, you know, we we knew I I would know during pregnancy because until the sixth month everything felt normal. And I did have ultrasounds, which the doctors wanted me to have. That's a a whole nother issue. I have questions about that now. But uh at the time it seemed prudent. After six after the sixth month or so, I you know, I would w in my normal pregnancies, and and my first one was Barkasham Normal, that feeling of feeling the weight of the baby, feeling the movement, feeling the pressure, the baby sitting, you know, on your Kishkas, and you know, like and it's funny, like for me, especially after I had a blooms baby, when I would have a normal pregnancy, I was ecstatic. And all of the things that so many people find so challenging, so many women find so challenging, uh for me it was like bring it on, you know. I of course the baby is heavy. That that that was all I needed to know. I wasn't looking at anything else, I wasn't thinking about anything else. And uh, you know, in the case of in the case of our youngest, it was questionable. He he was the largest of the blooms, he was five pounds something. So even when he was born, they weren't 100% sure that he was blooms. I kind of thought so, but that it was tested with, you know, it's it's it can be identified on you know blood tests. If somebody has it, if somebody is a carrier. So Schleimi was the youngest, he was the first one to get sick, and he was this was right after an extremely different difficult period for us in our

Schleimi’s Cancer Treatment And Loss

SPEAKER_02 12:28

lives. The Rebbe had the stroke in 1992, and Rebbe was nostalgic in 1994, Gimaltamas. Schleimi was diagnosed less than two months later in of. So we were in a mode of how do we go forward, how do we pull ourselves together? And and we had been living a nightmare for several years, and we learned, and it's something that I can say, I think with a good deal of honesty, we learned that living with a nightmare and living with hope are not mutually exclusive. And I I would say that I did have more hope during the time of the Rebba's illness, and the the newspapers and so on did not touch us. Gimiltama's happened and we had to deal. Having to deal with this devastating diagnosis less than two months later, so that would that was on the backdrop of that. There were certain other experiences maybe that I could can share at some point. But Schlemie was he had surgery, he was treated. How old was he? He was not yet four. He was and he he was the youngest, he was everybody's pet. He was bright and charming, but just a delicious personality, and everybody was crazy about him. He was the only one of our children that was born in Stamford, and the community really rallied. We were looking for a at one point towards the end, we were looking for a bone marrow to do a transplant, a bone marrow transplant, so we needed an exact match. And there was a huge, you know, people being tested, people just in all different ways coming together as a community to support us, and we felt very, very and our our our extended family, our the larger family of of of Schluchem all over the world, we felt very, very, very connected and very supported, and that made all the difference. High Lifeline stepped in for us right at the beginning and tremendous support. So Schlemi passed away. But what I started to say was that because of the because of the blooms, there's I I don't know if it has been documented, but for me it was documented that the it wasn't just a question of the medications working, but uh typically there's an effect on the bone marrow from the chemo and the radiation and so on. And the recovery in the blooms patients, the recovery for bone marrow damage is much longer and much harder. But you know, we came through that. We thought we were he was clear of the tumor, we thought everything was fine.

SPEAKER_01 15:16

Was the donor at the end? It was like some stranger or it was someone that you knew?

SPEAKER_02 15:20

The donor was it was not an exact donor. They couldn't they so they settled for what they could do, but it it did not it did not take. So we were in Sloan for weeks and weeks and weeks, and it it was the he was relatively comfortable most of that time until like the last week when you know massive infection set in and and so on.

SPEAKER_01 15:44

But so your other children, like with blooms, did they get nervous that like this is gonna happen to them?

When Grief Hides A Medical Crisis

SPEAKER_02 15:51

It's an interesting question because the next chapter that we had was I always describe it as bad fiction. Like I would never be able to sell the story to an editor because they would say, Oh no, life doesn't happen that way. But our daughter Bloomy, who was 15 when when um Schleimi passed away, it was like two years and a few months after his diagnosis. So he was six, she was fifteen, and they were all very close to him. She was especially close, and we saw that she wasn't doing well physically, but she just seemed very, very down and very trying to get her the right kind of support, etc. etc. But it didn't occur to us that there was an actual physical problem because you know she was grieving, and she so it showed on her, and you know, in any case, six months later in July of the following year, she was diagnosed with liver. And and that was the doctor who had treated Schleimy treated Lumi. And she called me out into the hall and she said, you know, she was usually a doctor with very strong opinions and how you have to tell the children and what to tell the children, and she she made me tell her what I was telling Schleimi because if she didn't think it was good enough, she was gonna tell him herself. That's terrible. Well, she she said it a lot nicer than that, but the the point for me was that she she thought I handled it well, so I had the green light to you know, it was okay. So when I was talking to her out in the hall when the uh the results came back of the biopsy, and we were in the hospital, then she said, I'm gonna follow your lead. We're gonna do whatever you want as far as telling or not telling. We had been very clear with our children from the beginning, and this was something I I I said it the earlier that there was a very, very powerful experience that I had that really shaped my thinking. I don't know if we have time for me to tell you what it was, but you'll you'll let me know.

Prognosis, Pressure, And A Doctor’s Role

SPEAKER_02 17:58

But if you might you probably don't remember, you're probably too young, but in 1994, in March of 1994, there was a the Rebbe had to be hospitalized for an eye procedure. And there was a van of Bahran that had gone to Davin in the hospital during the Rebbe's procedure. And on the way back to 770, a terrorist shot up the van. And one of the boys, he didn't pass away right away, but he was mortally wounded. There was not a shred of hope from the first minute. One was serious, but brach Hashem full recovery. One was not so serious, brachashem full recovery, and then there was my cousin. My cousin is Nahum Sasankin. And Nahum he was shot in the head. And the doctors were he was rushed into surgery, the doctors were extremely pessimistic. Nachum Sramarsi Swell, his parents came right away. And his mother, it's my father's sister, she's more like an older sister to us, she's the youngest, and uh she's always been a role model, Zelzi Vangisund, you know, she should be live and be well, incredible person. And from the minute she got off the plane, of course, it was all the media coverage and so on, from the minute she got off the plane, and the reporters were, you know, with the microphones in the face, and how do you feel and what do you say and what do you say and what do you think? And she was bright-eyed and she was, I'm taking lists. I'm making lists of people who want to be invited to his wedding. And that was her attitude from the minute she got off the plane. I'm making lists of people to send invitations to his wedding. Some people thought, and there are there, there are it was on television, there are newspaper clippings of the whole thing, and some people thought, Nebuk, this lady is just, you know, but most people were like, wow, this is incredible. And I saw her, you know, day in and day out, and just most, and my husband was very involved with uh with the whole, you know, all the decisions and so on. And a very, very prominent neurologist, pediatric neurologist, not who was 18, but he ate that's still pediatric, came to assess the case. Big, big doctor, he has a tremendous success record and so on. He walks into the room. My uncle, my uncle since passed away, so he was sitting there, my aunt is sitting there, and they're older children. And he's very calmly, he doesn't, he he just looked at the papers, he doesn't uh have to examine the patient or anything. He can tell, and he says it's not a question of if, it's a question of when. Some people you might say that he has a couple of days. I think it could be a couple of hours, matter of hours. But and he was just very yeah, been very, you know, that this is what it is, and he knows he's the he's the expert. The way my aunt described it, she said her sons were frozen and her daughters were hysterical. And she says, and I had to decide, am I going with the hysterical ones or the frozen ones?

SPEAKER_03 21:26

Wow.

SPEAKER_02 21:26

My uncle's from Russia, lived, you know, f from as a f from his teenage years, lived in Nancy Sol, did not speak any English. So he if they spoke in Yiddish, he asked my aunt, what did he say? So she told him. He said, Who is he? What is he? That if he has something to help heal Nachem, then we have to listen to what he has to say. Otherwise he said, he doesn't have anything to help him heal. Why are we sitting here? Let's go to Nachem, he needs us. Picked himself up and walked out of the room from this big, big, big, big, big document. Wow. The surgeon who operated on him was a Jewish fellow, and he was quoted in the newspapers as saying that he has he thinks he has a five to ten percent chance of survival. Many, many, many months later, he told the family, he said he didn't think he had any chance. But he saw that the family, this was before my aunt and uncle came, he saw that the family was being so strong he didn't have the heart to say that. So he said five to ten, but he didn't think five to ten. And he, you know, a really big doctor has humility. The bigger they are, the more humility there is.

SPEAKER_01 22:47

Yeah.

SPEAKER_02 22:47

Where they know what they don't know.

SPEAKER_01 22:49

Right.

SPEAKER_02 22:49

The Huffy Puffy, you know, doctor thinks he's God. It's an old model and it's outdated anyway, but that's that's a sign of a small person, not a big person. And what can I tell you? Seven years almost to the day after the shooting, I stood next to this doctor on the steps of 770 during Nachem's Khut.

SPEAKER_01 23:14

Wow.

SPEAKER_02 23:16

Nachum Bar Hashem, he he's definitely has deficits from the the shooting. He's Barhashem married, wonderful woman, raising a beautiful family, incredible children. Bar Hashem married children, grandchildren. But this idea, and this is something that Rebbe had spoken about, and I saw I saw it applied. See, take a page out of a safer and put it into real life. And there's a famous quote that says that the Gemara says that Rushus Nita L Refe Lirapes, permission is given to the physician to heal. And that Rebbe said about this a few things. One was we see from this that Tera recognizes the Mumchis, the expertise of the doctor. It doesn't say permission is given to human beings to heal.

SPEAKER_01 24:08

Right.

SPEAKER_02 24:09

That anybody can come along and say, Well, this is what I think you should do. No, there's a recognition that there is such a thing as mumchis, there's expertise. And then there's the diakaloshan, the very specific language to heal, to heal. And that's it. And because of hearing this, and because of seeing how my uncle and aunt, how they conducted themselves, you know, Schlemi had his first operation and they thought they got the whole thing. And then it turned out that there was a little bit that that they didn't catch, and there was a major relapse. They told me, you know, they rushed him into surgery, it was a Friday. They said if it's a long operation, that's a good sign. And if it's a short operation, it means that we couldn't do anything. It was a short operation because it had spread all over. And the doctor came in, the oncologist, and this was the partner of that, you know, tough lady, very gentle uh doctor, very kind, considerate, compassionate. He had tears in his eyes. And he was like, I don't know what to tell you. It's a very poor prognosis. It's very poor. And I'm picturing my uncle and my aunt, and I said to him, We do not ask our doctors to be prophets. If you have something to say to help Schleimi heal, we want to hear what you have to say. Numbers and chances and percentages when you're talking about an individual person anyway mean nothing. The only place that the numbers have is if you're gonna say that this medicine works 0% of the time and this one works 100% of the time. You know, when you're deciding a course of action and see what has the better track record or etc, etc. Right. In terms of predicting that is not your job. And you I saw his his excuse me, his shoulders relaxed. He told other people later, the Derrens made me a better doctor. Are you serious? I'm serious. Wow. Because it took off of him the pressure, uh, he didn't have to play God. Wow. How long do I have? Nobody can answer that question. Years later, when Rifke needed the lung transplant, and uh we had to, insurance required us to go to the closest center, which in our case the closest to Stanford, Connecticut, would be Columbia in Manhattan, and she went and she was evaluated and she was rejected. And she's sitting in the office, and this petite little Rifke, her personality was, I don't know, ten feet tall at least. But the doctor said, you know, we we we can't give you lungs because of the Bloom syndrome. So she said, you know, because you might you might develop it. She says, I don't understand. You give somebody else lungs and they could walk out of this hospital and get hit by a truck. She said that, really? Wow. He looked at her and he said, Are you in law school? Anyway, as it turned out, we went to Duke and it was a wonderful fit for us and incredible, incredible care. Anyway, so so these ideas were were very, very real to us.

SPEAKER_01 27:31

So as much as you've gained khizuk from your aunt and uncle, but they actually their their denial became a reality, however you want to say it, and they stood under the khapa with their son who had 0% 0% chance of surviving. But you didn't, you know, your children didn't survive. I I know that it's the same Hash Dem, and that was meant for them, and this is what was meant for you. But like, do you ever go to like one second? I believed in Hashdam as much as my aunt? Like, why didn't this work for me?

SPEAKER_02 27:59

You're missing so many things in that equation.

SPEAKER_01 28:01

Okay.

SPEAKER_02 28:02

So many things. Okay. So many things. Just by the way, both Mendel and Rifke did get married. Rifke was married, and her fasina was like an unbelievable celebration.

SPEAKER_01 28:15

Wow. But she but she she didn't have children, did she?

SPEAKER_02 28:18

No.

SPEAKER_01 28:19

And Mendel did? He also did it.

SPEAKER_02 28:21

That's uh that's also one of the uh the characteristics of Bloomsburg. You know, uh difficulty in that area. But Rivki was physically not not up not up to that. But let's take a couple of things.

Emuna, Bitachon, And Living Forward

SPEAKER_02 28:38

What does it mean to believe in Hashem? What does it mean? I I think sometimes sometimes people think like, you know, Amuna and Bitachim, they're very wonderful things, but they're way up there. And if you're way up there, if you're in that place, it's a beautiful place. And how many times have I heard the phrase of I envy you your strength, I envy you your Amunah? I'm just not that kind. It's so it's so missing everything. Right. It's so missing everything. The amuna and bitachen is that uh the way that Ebba described it once, it's actually fascinating. It's two sets of uh video clips on faith. And you can you know go onto the the website and find them. And one of the points that Ebba makes is that going forward, we have Bitachen. What is Bitachen? Bitachen is that everything is going to be good, batev hanira vahanigla, in revealed obvious good. If Khalila things don't work out that way, then looking back, that's where we can say that's emuna, gamzulateva, this is also for the good, or everything that the Abishta does is for the good, even if we don't see it, and so on. There's a Pasak in the Haftar, I think it's of Achun Shal Pesak who says, Eitcha hashemki anaftapi. I will thank you, Abhishda, that you were angry at me. And which by the way was carved onto we saw this in Yad Vashem, my husband and I. It was on the Arankadish in Theresen Stadt in the in the children's, there was a children's shul.

SPEAKER_03 30:19

Really?

SPEAKER_02 30:20

And they have the arankedish from that shul, and on the top of it, it's Eidcha Shemki Anaftibi.

SPEAKER_03 30:26

Wow.

SPEAKER_02 30:26

And one of the things that Debba taught us about that Pasak is that's not now. That's not now. When Mashiach comes and the whole story is laid out, and why everything that happened during Golas happened, and what was the good that was in it, then we can say thank you. With these eyes that we have now and what we see, this is not the time to thank for that. So believing in the Abishta means number one, and and this is something I'm so grateful that my my children were exposed to these ideas and this these beliefs and this way of thinking and living, not when trouble kicked in and oh, what are we gonna do? Oh, here's a resource, let's talk about Hashem. The idea of that the Abishhtur is on the one hand, we say he's Kalyachal, he can do anything, he's in charge of the world, there is nothing that's limiting him. At the same time, he made the world the way that he did, which on the surface of it is not perfect. It very often can appear to be a jungle in the worst kind of ways. And that's the world that the Abishta made. And to say, well, people chose this and that, it partly answers it, but it doesn't really, because it's still the world. The Abishta created Ra. He created it, it's not a separate existence. So we have a world that has the potential, the essence of this world is a beautiful world, it's a garden. That was what the previous Rebba, his last like tsava, in a way, that he left us with, and the theme that the Rabba picked up from day one, Basi Ligani, I have come to my garden. This world is a garden. Aye, it doesn't look like that. We're the gardeners. The Abishta wanted partners. He could have made it perfect from day one. He didn't. Why? Because he wanted us to do that with him. And we have choice. And we have is the Abishta in charge? The Abhistha, the Abishta is in charge. But that slash Shamalikanu, there's so much about how the Abhishta runs the world that we don't we don't have the data. We don't know what's behind it. We don't know we don't know any of those things.

SPEAKER_01 32:55

And when when we try and put our energy into thinking about how and why, all that, it's it's fruitless because But it also takes like a tremendous amount of work to get to that point. And I think for a lot of people, getting to that point could be those feelings of like, why did their child survive and not mine, and then to work through it and to be able to talk the way you're talking. So my question really goes back to like like I guess how how did you get here?

SPEAKER_02 33:28

Okay, so so let me tell you a story with Schleimi.

Honest Parenting During Medical Trauma

SPEAKER_02 33:31

Schleimi had a central line put in when he had that relapse, it was in in January of '95. He passed away at the end of December of 96, it was almost two years later. During that time, he had that the central line in his chest, and there was a dressing that had to be changed, I don't remember how often. I I think it was twice a week, and I had to do it. When he had an appointment, it would be done in the doctor's office, but I had to do it. And he would be very nervous when it was happening because he knew about this is contaminated, this is sterile, I had to I had to be masked, other people weren't too close, and you know, all the different materials that I had to use for the whole thing. So he would be very, very anxious. He didn't want me to talk to anybody when I was doing it. He wasn't in physical pain from it, but he was just nervous about it, very anxious. And and Bar Hashem, not once did he have an infection of the line, not once. And it it's something that I I I think is an important thing. We tried always to be very cognizant of the Chasadim and the Nisim, the kindnesses and the miracles that we saw along the way. It doesn't take away from the fact that there's tremendous loss and pain and grief and all of that. But it's important to be able to notice that anyway, I that last week when the the infection was was really, really bad and he was in a lot of pain, and I was changing the dressing. It was in the hospital, but I was I was changing it anyway. And he burst out at me and he said, It's not fair. And I'm thinking, what do I say to him? I I n never ever would lie to a child. Never. I I do believe that you have to be careful with how you how you give the truth. There are many ways of delivering the truth. So the first thing I said to him is, You're right. I said, and Abishta doesn't want children to have to have it it's called a broviac or grown-ups either. But until Mashiach comes, we're in Gullis. And in Gulus, sometimes things like this can happen. So he scrunched up his face, his nose like, this gullus stinks.

SPEAKER_03 35:57

Oh my gosh.

SPEAKER_02 35:59

And I it's it's almost 30 years ago, and I say from then till today, I have never heard an explanation that says everything as well as this. This gulls stinks. Wow. And yes, on the one hand, part of our job is to like David Hamel gave us the language, Ad Masai, it's until him more than once, Ad Masai until when part of our, you know, we have the the animamins and the animamin Rivki, by the way, at the end of her chuppashit shows that before the chassin broke the glass, she asked uh it was actually a close friend of ours here in Stanford, she asked before that they should sing animamin.

SPEAKER_03 36:46

Wow.

SPEAKER_02 36:46

And it was a hu it was, you know, hundreds of people there. Wow. And the crowd singing together, animamin. Wow. So these are not when we trot these ideas out for a fitting moment, it's one thing. But what happens, like a mu a a cousin of mine who grew up in Europe in Russia under the you know, the not good times, and she said, you know, like when she was growing up in the 20s and 30s, said Mashik was something for sick people, for old people, for poor people who had so many tsaris that they couldn't do anything about. And mesh was that with a little glimmer of mashek darshin Kumin. I heard a story once from from actually from from Rabbi Klein from one of the devast secretaries. He said that there was uh a gvir in the in town in Samstetl, who everybody in town had like given him their money to invest for them. And things turned, the wheel turned, he lost all of it. And of course everybody was devastated, but there was one person in town, they see that he wasn't affected at all. And they came to him, what did you know? And when did you know it? And if you knew, why didn't you tell the rest of us? Because it turned out that he had taken his money back from this guy like a week or two before. He says, I didn't know anything. So what do you mean? So how did you know? Why'd you take your money back? He said, I was walking into shool one morning. This guy was walking out of shul, and he said, Mashiach Sol Shankum. Mashiach should come already. He said, and I thought to myself, if this Gvir is asking for Mashiach, something isn't good, I'm taking my money. When Mashiach, of course, when people are in difficult circumstances, of course we call for Mashiach. That's not the point. The point is that when that's the only association with Mashiach, there's tsaris, ai mashiach, that's the mistake. And one of the really I I would almost call it revolutionary things that Debba put in into Jewish thinking, you know, where so much for so long people, Mashiach, what are you, Lababicher? Why was Mashiach so associated with Chabad, with Debah, with the still is, no? Yeah. Yeah. But I'm saying this is a long, long time. It's a long time. I remember, you know, in in 1970, there was Mashiach is coming to 770. It's it's a long time. It was the Debah's push. Dideba took Mashiach out of the category of miserable, beyond hope, when there is no hope. That Eba made Mashiach the concern of happy, healthy people who have resources, who have options, who could do anything. They could be anything, they could be in all kinds of work, they could be in all kinds. What's the whole the whole thing of Schlichis? Get the world ready for Mashiach. How do you get the world ready for Mashiach? Uncover for people that they have a connection to the Aibishir. Uncover for people what a mitzvah is, what happens when you do a mitzvah? What is the potential that this whole world is a place where when you say mashiach, you're talking about a world that recognizes and embraces and has integrated our connection with the Aibishtir. Now, when this idea, these ideas are introduced in the IC, better there than not, but it's a whole different thing. Then Schlemi grew up from he his he knew that you know we're on Schlichas because we're trying to share and to teach and to show what does it mean to live with that what the Abishta wants? What is what does it mean to Mashik was a very real expression of what we want to do with our lives. So when it comes to believing in the Abishir, I'm I'm gonna go back. You think I forgot about your original question? What did my other kids feel like?

unknown 40:55

Okay.

SPEAKER_02 40:56

I didn't forget. I should have warned you, Miriam. I am known for going around and around and around and around, but I'll get to the point.

unknown 41:05

Okay.

SPEAKER_02 41:05

The idea that the Avishther is in charge is something that we talked about. The idea that chances is not a Jewish word. It's it's just off the table. What's gonna happen? What's a prognosis? Only when you have to make decisions of what's the better course of action. Another phrase that hit me very early on, before we had a diagnosis for Schleimi, but after we had already been to the first ultrasound, nothing is a fact until it's a fact. What if, what if, what if also that's not how a yid is supposed to think. So when a word like denial, that's a not a good word. It's not a good word. Why? Because it's so easily misused. If somebody's in Lala Land and they're pretending that there's nothing serious going on, that's a different story. But you have to be very, very careful when you say that this is a serious situation. When my aunt was taking the invitation, the list, making the list of invitations, she knew very well what the situation was. She was not in denial. But reality is, do we know? In other words, we know what's going on right now. Do we know what's going to happen? Well, the chances are that somebody with a bullet in his that's not our business. As far as the thing of having immuna, it's another thing that Khsidis teaches us. Everybody has it. Everybody has it. The only thing is it can get it can get covered up, it can get blocked. And having negative thoughts is not a sign of a lack of amuna. We're human beings. Right. Thoughts come into our mind, and they're not always pretty, and they're not always correct, and they're not always kosher, and they're not always right. Why? Because we're human beings, we're not bad, we're not that kind of person. We do have to make the decision of what are we gonna invite in and develop, and what do we say, you know what? So I didn't initiate conversations with my children that I didn't have what to offer. In other words, you know, my kids were already savvy with computers. Even in the 90s, you could Google, you could get information, you could find when Google came in, but whatever. They didn't have to go to the library and start looking things up. They could get information. I suspected that they did speak among themselves, especially, you know, Mendel and Blimi were closest in age. He was seven years older than her. Rifke was my first my first real computer kid, which at the time I thought was, oh wow, what a you know, I I've got a geek. I found out the hard way that it comes with a lot of uh challenges. But she so she was she they were educated. When Mendel was a year old, a little bit less, I was I was very concerned. All I knew was that I had no answers. I had a lot of questions. And I had this bright-eyed, delicious little baby who just was not growing very well. And the the diagnosis of failure to thrive is horrible. Those are horrible words to hear.

SPEAKER_03 44:15

Right. Yeah.

SPEAKER_02 44:17

I don't know if there's a better way to say it, but it wasn't helping. Try this food, try that. Nothing was helping. And I wrote to the Debba. And I think I wrote that I was scared. Several different letters. I get some of them mixed up, but I I know at one point when I wrote that I was scared, the Debba made a question mark exclamation point. So that was somewhat reassuring. I I think part of me was thinking, like, you know me and you're surprised that I'm scared. But then the Rebba answered me. Viuyambai, and it will be fulfilled in him. This is a bruclets given by the bris. Zeha Katangodal Yhiya. Said by the bris of a baby boy, this small one will become big. So of course it filled us with joy, and we took it at a very shot level that he'll he's gonna grow. He's gonna he's he's gonna grow. I only found out after he passed away, because you know, my family, everybody knew about this answer, and everybody was very encouraged, you know, the extended family. Right. I only found out after he passed away. He was he actually lived the longest age-wise, he was 36, and he told his brothers that every morning he looks in the mirror and he says to himself, that Eba gave you a bracha, now go out and make it happen. So the thing of a bracha, it's with it, it's written, it's written, you know, that a bracha is like rain. If you cultivate the earth and you plant and you plow and you all of those things, then the rain comes and things grow. But if you don't do anything with the ground, you don't plant and you don't cultivate and prune and all those other things, the rain comes, what do you have? So the idea of working with a brucha, and we thought we knew him, we thought we knew the kind of person that he was. He was a doer, he was involved, he was busy.

SPEAKER_03 46:23

Wow, wow.

SPEAKER_02 46:24

And we only found out afterwards how many, many people how he impacted their lives. Uh, the first night of Shiva, somebody walked in and he said, I have to tell you, I would not be here today if not for Mendel. He saved my life. And he goes on to tell the story of how that happened more than once. More than once. And it still happens. We'll be at a wedding, and uh we were at a niece's wedding in in Finland, and somebody came over to my husband, and you know, I I was in yeshiva with Mendel years ago, and and I was at the point he was in the division for the Balichuva. He said, I I wasn't gonna stay. I had made up my mind this is not for me, I'm leaving. So be but because of Mendel, I stayed in yeshiva, I'm married, I have a family. If Mendel had not intervened in my life the way he did, I wouldn't be here. I wouldn't be me. I wouldn't have what I have. Wow. You know, Bloomy is like in a certain way the least known of of these four of our children because she her whole thing was so quick. She was fifteen and a half when she was diagnosed, and she passed away not even six months later. Wow. But also in her way, you know, impactful and and those who knew her retain a very strong Rivki you can Google. She has videos on you know, out there. Rivke Rifki, either Rivki Darren or Rivki Darren Berman. And really?

SPEAKER_01 48:01

Oh, I have to do that. Okay. Wow. Wow. It's unbelievable, it's unbelievable that that through the soil, like what you gave to your children, you know, they're in their own amuna and their own holding on to hope and everything. I think that's just so amazing.

SPEAKER_02 48:17

So we started at the beginning talking about our marriage. When we asked the Rebba about getting married, and that we want to get married, we're asking the Rebba for Bracha. The Rebba's answer to us is like foundational of our life. The Rebba said, Nachin Hashidak Vitav. This Shiddach is correct and it is good. Yah Bishateva Mutztakas it should be at a in a good and auspicious time. Askir Alatsian, I will dab in for you by the aisle of the previous debt. So I'm not always in a situation that I could say that I see the good. Some situations that we've been in in life don't look good.

SPEAKER_01 49:04

Right.

SPEAKER_02 49:05

And I don't want to twist myself into a pretzel and say, but really, but really. Right. Yeah, Meshik will come and then we'll see how it was really good, fine. But that's that's not, I don't put my energy

Gratitude Without Bypassing Pain

SPEAKER_02 49:16

there. But the idea of that, especially when the good is not obvious, of the question of what can I take from this. I don't know about other people, but I can safely say that over the years in talking to people, I think it's safe for me to say I'm not the only person who has a tendency to beat myself up and blame myself and shame. Oh, it's because I'm this and because I'm a that and da-da-da-da-da-da-da. And especially in a situation of grief and loss, it's very easy to to go down that rabbit hole and just it's not just not healthy, it's not sound, it's not good hashkafa, it's not true, it's not anything good. But it's a human weakness to do that. And you mentioned about that that title. It was very, it was very helpful for me to have that experience. My husband and I have been speaking on these topics for many years, and we came to a community that we were invited to address over Shabbos, and I'm looking at the I I hadn't seen the actual titles beforehand. I'm sitting with the program, and I see it says, lunchtime, Mrs. Darren will speak during the Shabbos meal and topic, why is God picking on me? And it like it hit me between the eyes. Whoa, whoa, whoa, whoa. What do I do with this? Where do I go with this? So, just parenthetically, one thing that I want to say is that we have to really, really, really tune in to the brachis of our lives. We start our day with Maida'ani and we have to be on a constant search for Brahis. Because when we see them and we express gratitude, it's reinforcing the idea that our relationship with the Abishdir is one of Brahis and love and gratitude. And the more we notice it, it's uh it's an idea in modern psychology with children. What you notice, you get more of. It just it creates a Kaylee for more and more and more. There are times that that feeling can be can be shaken. And the issue is not just a question of pushing those feelings away. The issue is if you develop the idea that I said to my children after Rifki was her yardsite was uh 10th yardsite was just a few weeks ago, and at the time I had said, actually, I was came up before this was with my grandchildren, but I had said it to my kids before. We are a very blessed family, Bar Hashem. We are rich in brachis, we are very, very blessed. Yes, some bad things have happened to us, some horrible things have happened to us. But we are the and when when I said it to my grandchildren, my granddaughter said, Yes, Babi, but some very, very bad things have happened to us. And I'm like, yeah, very, very bad. But that sense of of who we are, you know, the the the mushel of the olive and yidn are like the olive and crushed and we give out the oil or whatever, right? That you know, the Abishta has many ways of helping us get the oil out that it shouldn't be with misery and so on. But if our basic sense of our connections, the Abishta is with me always, even when it doesn't feel good, and the Abishta is holding me always, the Abishhdir loves me always, and nothing changes that. When I have a bad day, it's not like I can say, and they come. They come, you know, it's not just on a personal level, we as people in this world, you know, it it's sometimes I feel like we have almost like I wouldn't say a magnet, but we're especially sensitive to other people's loss. Right. And and maybe sometimes numb and feeling bad, at least for me, that sometimes I feel like I I'm numb, and that hurts me even more. But it's like it's like there's something inside saying, okay, Ganook, stop, stop, but whatever. It's still the pain still goes in. One thing that I struggled with, I don't believe in that in in bypassing, emotional bypassing, religious bypassing, like to ignoring the feelings. I struggled, and sometimes I feel like I might be maybe even got it. Don't let it be your lens. Okay. Don't let it be your lens. The lens is Ashrenamatai Khokina. For all of the brachas that we have as yidn, as khziddim, and family. So many brachas. That's the lens.

SPEAKER_01 54:16

I wanted to say something, and I feel because I know that we have to also finish off, but the lens has to be, like you said, the bracha and the good and everything. Nah, she has it worse than me. Right? Because just seeing someone else's worse doesn't necessarily help you feel better.

SPEAKER_02 54:31

Right. And the thing is about with somebody, with other people's things, there's no Olympics in

No Grief Olympics, Only Help

SPEAKER_02 54:38

grief. There's no contest. For uh, I think it was um Dr. She just passed away recently, that Holocaust survivor, uh, Edith Eager. So in the beginning of her book, she's describing two women who are crying. One is crying over her daughter as untreatable hemophilia. I'm not sure it was it only daughter or whatever, and the other woman is crying because her Cadillac came in the wrong color, in the wrong shade of yellow.

SPEAKER_01 55:07

Wow.

SPEAKER_02 55:08

And she's heartbroken. And she says, look, on the surface, I would look that she said, but if you go a little bit beneath the surface, the woman with the wrong shade, you know, the woman who's crying about her daughter, obviously that's a very legitimate grief and so on. And the tendency that we would have, look what she's crying about. Said the woman with the wrong shade of yellow Cadillac is trapped in a loveless marriage with a husband who is not abusive, but I don't remember all the details. But she's a miserable, miserable woman with a miserable, miserable life. And this wrong say shade of yellow in her Cadillac is, you know, yeah, it where in Pirkyova said, Altadanas Khaveka, don't judge. You don't know what somebody else's capacity for pain is. You don't know what they went through before. You don't when somebody else has a problem, the only thing you can how can I help? That's one thing. Another thing is when we start using tsaris as a measure of worthy worthiness on part of an individual, so what are we saying about the tsadi who have suffered? Right. What are we saying about them? Well they probably they're not who we thought.

SPEAKER_01 56:38

People say, Oh, you're so special, that's what Hashem chose you. You know what? You don't say that on you you don't say that on somebody else.

SPEAKER_02 56:47

Not to them, that's for sure. And and you don't i i the what it's it what it is is that it we're not we're not here to be comfortable with other people's saddles. The only thing is what can I do? And I can't do anything but but say till him or do an extra kindness or be a better person, work harder to bring my shikh because this gulla stinks. And and the fact that our our minds have a way of running to other that you know it's a let's see, you hear about an accident on that street, and oh, but I don't go to that street. Like then that's part of our Nefesha Bahamas, our animal soul that's trying to protect us and show how we're not in that situation, so that could not leave it alone. Leave it alone. It's it's not something to it's it's not helpful, it's not coming from a good place. Somebody else's Tsaras should get from us only, only, only, only how can I help? And if I don't have a way that I think I can help, so you can davan for the end of the goals. Do do a mitzvah for the end of the goals, bring Mashiach. But when we start using things to measure who's more worthy or less worthy because of what they went through, making the abish dishes. And you know, not to you know, say, how come this one and not mine and this and that? Everybody should be gizund and everybody should have everything good and to use suradas as a way of measuring who deserves and who doesn't. There was once uh somebody, I I don't remember the whole story, but something about somebody who came to some Rebbe and he was he was not at all from. And he said to the Rebbe something, it is I I don't remember which Rebbe it was, but he said something to the effect of, you know, somebody like me, you know, you can say that I don't deserve to have anything good or you know, because I don't, you know, do mitzvist and I don't learn Torah, I don't, you know, have that connection, Tashram and all that stuff. But how come, you know, how is it that somebody like you, how is it that you're go through suffering? And whoever it was the the person that he came to said, Did you ever say Shema in your life? Even once? He said, Yeah, I said Shema. Well, yeah, yeah, I said shit for saying Shema one time, you deserve all of the good that you ever could possibly get, and more. Wow. In other words, like we're not in the business of evaluating who deserves what. As far as everybody deserves good, there's been enough enough suttas going around that we don't have to make a case for that. But we can do though with for ourselves when when we don't see the good, what good can I take out of this situation? In other words, I I feel like the way our Mendel looked at the bracha that he had, how do I make it work? I'm I'm meant to bring another thing is before we got married, we were um we were zeikh and we married it to have Yachidis and to get Darebh's bracha in person. And one of the things that Darebh said to us was, I'll say it first in Yiddish, you will make things warm and bright by others, and Hashem will make things warm and bright by you. And not if if, it was just you're gonna do this, and the Abish is gonna do this. And Bar Hashem, and the way my husband puts it, sometimes he says that sometimes we're in this been in a situation that doesn't feel warm and bright at all, it feels dark and feels cold. But when I can put myself in the situation of what can I do to make things warm and bright for somebody else, even when I'm not feeling that, that that smile on the I don't have the smile, certainly not in my heart and not on my face, but I can cause somebody else to smile, that smile reflects back to me. But we have to, I I can't stress it enough. Not to we're not meant to be superhuman, we're human, and we have you know, we have our challenges and we have our difficulties and we have our lacks, all of those things, and there is absolutely nothing good about beating ourselves up ever. No shame, no blame, none of that stuff. You have something you want to that needs fixing, so go ahead and fix it. And if it's just beating yourself up, it's only the A Sahara trying to distract you from the marvelous, wonderful, good things you can do in this world.

SPEAKER_01 1:02:04

Okay, I don't even know what to say. I think I'm look amazed by you. I think many people, I think whoever listens to you will be amazed by you. And it's no more suffering, only simchas from here on.

SPEAKER_02 1:02:16

We want Mashiach now. We do, we really do. I think there's there's a point about Mashiach that I think it's important to bring you in over here.

Living With Mashiach Consciousness

SPEAKER_02 1:02:25

The Drebis spoke about Mashiach on a personal level. In other words, the consciousness, the awareness that the whole world is going to have when Mashiach comes, we can live with that now. We can live with that now. And one of the routes there is when we're I'm sorry, I'll I'll try try and make very quick, just a quick vant. Varebba was speaking in 1946 about for a basrifka dinner for a at that point, it was a question of persuading the Jewish community why we need to have educate girls in in Taiwan and the question was like, what are we trying to make rabbits? Now these are from the Debba's notes. I don't know if he actually delivered the speech, but these were the notes that the Debba left. And the Debba says it's not about making Rebutins, it's Pashat that they should be yid, because for many of these girls that don't have the, you know, when they don't have the education, so making money, getting a job to make money is they're worried about parnasa, and they're worried, you know, to make a living. And if they're not worried about that, then it's to have, and Dadab uses the English words, a good time. And as far as they're concerned, Yiddishkait is just a matter of burdens and things that limit you, things that you can't do. And if they do something of Yiddhishkait, they'll give some tzdukha, but they have absolutely no sense of how to allocate sdukka properly. When we educate girls, it's not about making a rebbitam, but Pasha that they should be yid and that be able to to to to have a Jewish family and to raise Jewish children and and so on. And and and the Rebba said this was uh like like we had just a few weeks ago that Shabbos, this was for a Sunday, on Shabbas we read in that week there was saying all of the curses at the end of Vayakra. And then we go from that to the next week. What's Bamidbar counting the yidn? What is the counting show? Mitehibasan. Because the Avishta loves us, he counts us as precious because we're precious to him, he counts us all the time as a sign of how much he loves us. He said now, 1946, when the the knowledge of what happened, that the Techcha that was poured out on our brothers and sisters in Europe, not just something to read, but was actually poured on them, it's very easy if we if we to become so discouraged and that can weaken a person's attachment to Tehran Mitzvash. But we're already we're we're looking at Bam Midbar. We focus on Bam Midbah, we focus on the fact that the Ahmad loves us, and think in terms of especially now, that not only do we have to do what we have to do, but we have to fill the place and the roles of those who were taken what they would have done. And we're here in their place. And it's it's like it's 80 years ago, and it's like every word is still, you know, an expression for parents who have experienced this kind of loss. The expression, like I mean, I saw those words, I was like, Oh, the Techa poured on our heads. You know what that means. And that the idea of don't let that derail you because the also something Miriam, you're gonna have to figure out how to edit all of this, I don't know. But uh Bloomy Bloomy had beautiful red hair. And it was always a thing our family is not redheads, but you know, back in the day like my father-in-law, this one, that one she had red hair and we always celebrated her red hair. When she started treatment, which is a whole nother story, but the doctors had said it wasn't supposed to cause hair loss, and we were in the car together, the whole family, almost the whole family, were in the car, and her hair was coming out in clumps. And my husband pulled the car over to the side of the road, and I got out with the other kids. He got into the back seat and she was crying, and he wanted to give her something. So he said to her, he said, and this was again six months after Shlami passed away. He said, You know, I saw a letter from the Rebba to a family whose whose child had passed away. And and the Rebba was saying how the Nishama always stays close, and Ms. Mayh Bissenchasam is happy with the f the f happiness of the family and grieves when they're sorrow in sorrow. So he said to her, Imagine Shelemi sitting on the roof of the car like he liked to do, and swinging or kicking his feet in and out the open window, and imagine he saying to you, Blum, don't cry. Because when you're when you cry, I cry. When you're sad, I said, be happy. For that issue for sure, and it spilled out in other things. He said it was like shunning a faucet. It was like shunning a faucet that she could make Schlami happy. Wow. And and it became almost like you know, it was like a joke, you know. She saw one of those sweatshirts in the mall once, I'm having a bad hair day, and she's like, Oh, I should get one of those, I'm having a no hair day. Wow. But not that not that there's never any tears. It doesn't mean that we have to clamp it down and ignore. No. But the having that sense of empowerment that we're connected, and I can make my child, and I don't want them to be sad. It can be very motivating. Khazalm, if it doesn't land that way, so if it doesn't land that way, so something to work with. We're not robots, anyways. Okay, well, wow, thank you so so much. I really appreciate you coming. We should have good news to to to share. Meshik will come, we'll all be together. Nishamas beguf him. You know, this is uh the Animaman has 13. Number 12 is Meshik. Number 13 is Triyas Hamasim, the Nishamas come back, the bodies are healed, whole, happy, healed families. Sounds like a good idea.

SPEAKER_01 1:09:16

Yeah, I like it.

Closing And How To Reach Us

SPEAKER_00 1:09:20

You've just listened to an episode of the Grief Journey Podcast with Miriam Ribbiat, brought to you by Mayrim. For more episodes, please visit the Mayrim website at www.marim.org. Help us reach others who may benefit from this podcast. If you know someone who might find it meaningful, please consider sharing it with them. If you have questions or comments for the speaker, or if you would like to suggest a guest for a future episode, we would love to hear from you. Email us at podcast at mayrim.org. We look forward to having you join us for the next episode.