Jody Gelb on Navigating Life and Loss with a Medically Fragile Child

What does it mean to parent a child whose life is both a miracle and a medical emergency? 

In this tender and unflinching conversation, Broadway actor and author Jody Gelb shares the story of her daughter Lueza—her first child, born with disabilities resulting from a catastrophic birth injury—whose life was defined by both relentless caregiving and radiant joy.

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Click here to watch on YouTube

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Through the lens of her micro-memoir, SHE MAY BE LYING DOWN BUT SHE MAY BE VERY HAPPY, Jody speaks to the reality of raising a medically fragile child with cerebral palsy, where hope and anticipatory grief coexisted, and where love lived in the details, even amidst exhaustion and heartbreak. She takes us inside her NICU experience, evolution, reflects on self-judgment, ritual, and resilience, and explores what it means to live close to both life and death for years at a time.

This is an episode for caregivers, grievers, artists, and anyone who knows what it’s like to live inside a contradiction, and still find meaning there.

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Takeaways:

• Micro memoirs offer a powerful, distilled way to tell grief stories with clarity and emotional punch.
• Parenting a medically complex child requires living in constant contradiction: hope and heartbreak, joy and sorrow.
• The NICU experience leaves a lasting emotional imprint and is often under-discussed.
• Anticipatory grief changes how we relate to time, memory, and presence.
• Grief rituals and proximity to death can empower us to live more intentionally.
• Siblings of medically fragile children have unique emotional experiences that deserve recognition.
• Even in the most difficult circumstances, love and laughter remain possible, and necessary.

Connect with Jody Gelb:

• jodygelb.com
• Buy the book
• About Lueza

Connect with Nina Rodriguez:

• @griefandlight
• griefandlight.com
• 1:1 Grief Support

Disclaimer: griefandlight.com/safetyanddisclaimers

Transcript

I didn't want to sit down and say, you know, Louisa is very likely going to die young.

I didn't want to throw that out, so I would say other things more subtly, but that I thought conveyed that sense, was, Louisa is very, very sick right now.

You just lost your loved one. Now what? Welcome to the Grief in Life podcast where we explore this new reality through grief-colored lenses. Openly, authentically, I'm your host, Nina Rodriguez. Let's get started.

I never dreamed that she could walk or talk or sit or hold her head up. I dreamed about the other crippled children doing miraculous things, suddenly hearing a friend's child who could only howl for vocal communication, making words and taking steps. I could never imagine Louisa being different. I couldn't picture her sitting without the support of her wheelchair and seatbelt and side supports and headrests that

cradled her neck and head because she wasn't able to hold her body in any position. I knew so many severely disabled kids, but I would still marvel at how Louise's physical situation was one of the worst. Her body was a combination of extreme floppiness and extreme spasticity. When you read about cerebral palsy, it is always described as a non-progressive lesion of the brain.

It doesn't get better, but it doesn't get worse. I am glad that I didn't know that this was a lie. It gets worse and worse. Spines become deformed, the dreaded twisting movements of dystonia, lungs become delicate and because the swallowing muscles are weak and saliva and micro aspirations of food can cause pneumonia. Aspiration, pneumonia. Brain damage isn't good for swallowing.

Louisa couldn't hold up her head or her trunk and the muscles in her arms and legs were as tight as metal cables. One year when I took her for her yearly visit to the orthopedist and showed him how bad the spine was twisting, he referred me to the other doctor in the practice whose specialty was straightening spines. A couple of weeks later, I was lifting her out of the wheelchair and placing her on the paper covered examination table. The doctor's fingers were long and tapered.

and he was explaining how my daughter should have steel rods and screws inserted along her spine to straighten it. During the procedure, the child would be cut open in the front and back, and I just kept staring at his long fingers. I made my voice high and submissive. I don't think we can do this with Louisa. We would be too scared to put her body through this.

When children aren't cognitively intact, we just let nature take its course. But she... He paused.

She's great.

she could last a long time.

thank you so much. I don't think we'll be able to do it. She's very happy and she's not in pain. She loves life. Thank you.

How do you keep hope alive while parenting a child whose life, you know, may be cut shorter than your own? In today's conversation, we are going to explore the reality of parenting a medically complex child, navigating anticipatory grief, and how one survives the unthinkable. Our guest Jodi Gelb is a Broadway actor having performed in acclaimed productions such as The Who's Tommy, Titanic, Big River, and Wicked.

She has also held roles in TV shows like Law and Order and Dr. Death. A native New Yorker now based in San Francisco Bay Area, her life has been filled with standing ovations, frequent hospital visits, and everything in between. Today we are hearing from her as a mother and author of her newly published micro memoir, She May Be Lying Down, But She May Be Very Happy, about navigating the life, love, and legacy of her oldest daughter, Louisa.

And with that, Jodie, I'd like to give you a very warm welcome to the Grief and Light podcast.

Thank you so much. It's so nice to be here, Nina. I appreciate it.

It's an honor to have you here. And that was a beautiful reading, an excerpt of your memoir, which I feel it really depicts the pain, the confusion, the reality, and also the love and love of life that Louisa had and the hopes you held for her. So thank you very much for taking the time to share that excerpt with us. And I'll begin because I'm so curious in your own words, what is a micro memoir and what made this the right format to tell your story?

When people have asked me that question, I say it's a very short memoir. And it's just the way, I mean, I came into writing this never with this intention of, I'm going to now write a memoir. I started, because I considered myself, you know, an actor. I had written some stuff for theater, you know, where I wrote one person shows and.

monologues and things like that, but I'd never written this, done this kind of writing. And so I started writing in the third person, giving myself a name, using Louisa's name, but not using my name and talking in the third person. And this went on for years and years. And finally, somebody that I showed some pages to suggested putting it in the first person because it was a memoir. so I then figured out how to do that.

I think it was the only way that I could write what I wanted to write was these short, vivid, hopefully vivid pieces about my life, our life, Louisa's life, all of us together. I could only tolerate and only felt that I had the skill to do the way it came out. So I really, it was not thought out beforehand. was just, this is intuitively

the only way that I could do it, I think. And then I thought, you know, just embrace it. This is what you want it to be, short. This is the only way you feel you can do it. So just say, okay, let's call it a micro memoir because you know, micro, the word micro is used a lot these days for all sorts of things, right? So I kind of liked that title and then that's just went with it.

Well, thank you for that. thought it was brilliant the way that it was written. And it's the first time that I personally have heard of a micro memoir. That's why I asked like, what made you go this route? But honestly, it was brilliant. I really enjoyed reading it. And it was very vivid in very few words. In some cases there, I felt it was almost poetry like they had a poetic element to it that you didn't need these long paragraphs or

chapters to describe and to take the reader exactly where you were in that moment. And I felt like I was there with you. I felt like, you know, to tap into the actor side of it, the acting side of it, I felt like it was like a scene that opened and you were just fully immersed and then it closed. And then another scene opened and you were fully immersed. And altogether, you get this picture and the evolution of everything that happened as it happened. And you leave the reader with a sense of wonderment and just enough information to understand.

but not so much that you're spelling everything out for the person. So it was beautifully done and I thank you for that. Yeah. And so one thing that stood out to me immediately is you describe yourself as a hybrid, quote unquote, calm and hysterical, peaceful and self-loathing. So how did this internalized duality shape the way that you navigated Louisa's life and your grief?

Thank you so much.

I was extremely lucky in that my husband

had a much calmer center. So he was a very balancing presence. And that's actually how I ended up realizing that this felt like it had to be the title of the book. Because one day when I was feeling, I mean, wasn't, you know, yelling, nothing outwardly, but I had this terror, terror in my heart. Louisa was a baby. She was having maybe exercises on the bed with a physical therapist that came to the house.

And, you know, she couldn't roll. She couldn't do anything physically, let's say at four months or so. And I started to have this, you know, just this moment of like, well, you know, will she ever be able to, will she always be lying down? And that's when my husband, without even thinking, said very quietly, she may be lying down, but she may be very happy. And, you know, he doesn't remember saying it.

I remember it so vividly because it just instantly, I don't know if I can say it instantly calmed me down, but it was like, that's what the path ended up, that's what ended up happening was that she, she was very, very physically disabled, you know, to an extreme level, but her mind was sharp and clear in that she understood what we were saying.

She had a way of doing a yes and a no with a shake of the head or a little, aye, little sound. And, you know, that's how we communicated and she was so happy. So that's what got us, like kept us in life was that, okay, she's happy. And that was a very powerful thing when I could realize that when she was a baby.

and I was in a lot of terror. And so how did it manifest? just, you know, I mean, I remember once in a while, probably shrieking in my parents' apartment when I realized that something really bad was happening when we thought maybe the birth was just so terrifying, but very possibly, you know, people all had that scary birth stories, right? Which was great because that's what you needed. You wanted to have hope.

So, you know, there was this thing of, I think it's going to be fine. We got her out of the hospital after 10 days. We moved into my parents and we thought, okay, it was scary. It was terrifying, but that world is not, you know, we're not those people. We're not, nothing bad could have happened because it's not possible. And so I do remember something happening with her and she made a very explosive, strange movement at some point. And I knew instantly that meant.

she's probably having seizures, which at that time I already probably knew at some level that's really bad news because that has something to do with an infant's brain. And if the brain isn't working properly and I have a vague memory of screaming and being with my mother and getting through that, but I also have this other quality of

being in the hospital with her when things were going very badly and also feeling being very centered and very calm, like an eye of the storm watching it all happen around me with doctors rushing in. know, Louisa was possibly dying at that moment because something was happening in the hospital and I was still and calm. You humans are complicated.

And so I kind of, that's why I say I'm this hybrid. You know, usually I'm managing quite well, but I have one of those nervous systems. It's a little bit more reactive than I would probably like, but that's probably why I went into theater because we have a lot of emotional people that want to channel that into creativity and work.

Well, I could thank you for sharing that and I could definitely relate to that sensitive spirit. It's, you know, people who perhaps feel more intensely and whose nervous system is more attuned to things that are happening around us for a myriad of reasons. And also that has that shadow side that could send us spiraling very quickly. It's both a superpower and something that we need to work through often.

That is so clearly, clearly put. Thank you. That's beautiful.

No, I could relate. I love the way you described, you know, especially your experiences growing up feeling this way, this internalized duality. And also that came more to the surface with everything that happened with Louisa. You write vividly about the NICU, about catatonia, the terror, the tenderness, everything all at once. So what do you wish more people understood about the early days of parenting a medically fragile child?

So interesting. think it's so individual in how you deal with it because there were a of babies, obviously, in that NICU in New York City. The babies that were normal weight, Louisa was full term, seven pounds, 11 ounces. They moved her to the front very soon after. Some babies stayed further in the back. They needed more care. Some babies were two pound babies.

Everything was going on there. What I needed, and I don't know, some people might need more information early, I found out that I only could handle so much information because we were facing the worst horrific accident that had happened. And we didn't know that at that point. All we knew was, the birth was scary. She wasn't breathing when she got

when she was emerged, they intubated her. went down, unfortunately her wrong pipe came out, went back down into her trachea. So she got oxygen. More than that, we were kind of in a state of shock. So it really depends. I'm sure some parents are going to want more information, but I feel like you have to stay strong. And I think I would say be careful.

It depends because some people might want to know everything right away, but they're not going to know everything right away. But obviously communication is so important, but at the same time, for months, I would only say to the doctors, can she still be okay? That was my only question. we had to get an MRI for something. Can she still be okay? That neurologist said, yes, she can. And eventually,

I didn't start to realize what had happened, but I got to do it more on my timeframe. So I think that's so individual. But I've also heard the horror stories where doctors say things too soon to a parent. And they may not know because you can't see any crystal ball, but you can tell a lot from certain kinds of brain damage. There will be deficits or whatever.

unpleasant word they use. What's the word? Delays. That's a confusing word because delay to us sounds like, well, you can be delayed, but you catch up, right? So I lived with that for a while. So delay was an okay word, but I would just say, get as much family support as you can, because that's why we were so lucky. My parents happened to live close to the hospital. We just walked down there.

once we had to leave her, like after I got out of the hospital a day later, we could leave the hospital. She stayed an extra 10 days. We just walked into their apartment and stayed in the extra bedroom. And there was no discussion of how long you stay. Nope. We just lived there for about nine months. And so whatever support you can get, that is crucial. Yeah.

And it sounded like everybody just understood that it was important to support each other in this moment as you learned what was unfolding and exactly what you were dealing with. And I find it interesting, I recently interviewed a couple that both of their children were diagnosed with a rare genetic disorder. One of them unfortunately passed, the second one, they're trying to save his life through finding a cure. They don't have a cure right now, but they're trying to. And one parallel that I drew from the conversation with them and from your book,

is that in both scenarios, you describe learning something's wrong with your child, right? And not fully understanding what that is. You just know something's not right. And as you learn that, it feels like you are literally thrusted into a brand new world. They describe it as a new planet where they didn't know the rules of this planet and they had no map. And they just had to figure out, okay, where are we and where do we go from here? And you describe it as being dropped in a new country, like a foreign country.

where you don't know what you're doing. It's everything is unfamiliar. I thought that was a very interesting parallel in situations that are not the same, but share similarities. So maybe, you know, share a little bit about what you meant by that, what that experience was like at the Navigated Inn.

That's the chapter that I opened with called Landing in Afghanistan when Louisa was a baby and we got hooked up with another hospital because clearly she needed physical therapy and medical protocol where my husband had to learn how to give her injections twice a day for a month. And the social worker woman who was sort of overseeing this and who would deal with the parents.

I remember calling her one day, probably in a state of despair, when let's say Louisa was six months old. And there's just this feeling of, really, I don't know how to live. don't know how to, I feel like my life has been destroyed. she sent me this piece of paper, which I think many parents are sent by their social worker or by their pediatrician. And it's called, Welcome to Holland. So many people know it. I think the woman that wrote it,

or works for PBS. It's a beautiful essay about you think you're going like having a baby and you're it's she made the metaphor of you've planned this wonderful trip. You are going to Italy. You're going to see all the sights of Italy. But for some reason, the plane lands in Holland and Holland is great, but it's, you know, it's totally different. She was told soon after her baby was born that he had Down syndrome.

And so she wrote this beautiful metaphor of reorienting their gifts here too. That was kind of the point, which was beautiful. For many months and years, I thought, I love that piece, but I've got to write my own piece because it's not really like Holland. It's more like a war torn country. It was terrifying. And so with great love for what she wrote.

because so many parents know that thing. They go, yeah, welcome to Holland. So that's what inspired me to describe my experience of, yes, being in a foreign land that feels like you're all gonna die. You didn't know how to survive. That's kind of where that came out of.

Thank you. And you mentioned planning Lueza's funeral for years. It's something that was very front and center in your mind as you realized and as much as you wanted to hope, there was also this other side of that hope that the possibility of her passing was very real as well, even though you're juggling both the hope and the anticipatory grief. So what did that look like for you and how did it change your relationship with time? Did it allow you to be more present or?

Did you feel like it robbed you of time or how would you remember what's done?

that I think it allowed me to be more present in a way in that I felt like mobile, know, where these things are hanging over a baby's crib and they're all kind of balanced. felt our life was this perfection of balance because Louisa was with us. My younger daughter was doing well. We just had so many, so many gifts and something about all the fear, like at night I'd be on Google looking up bad stuff.

looking up life expectancy.

Don't look up things on Google. Right. Do not recommend.

I a website, this guy, his whole website is about life expectancy. So this is the kind of stuff I would find. So I do all my professional worrying and then as much as I could forget about it and just think we're all together, we're all together. It's okay. It's something that's going to happen. It's unimaginable. You prepare for it as you can, but you can't really prepare for it. But it helped me for some reason to worry about it.

and think about it. And one of the most beautiful, wonderful books that I hope that any parent of a child with special needs gets, I don't know if it's still in print. Of course, I can't remember it now, but it's this incredible book where each page is a reading. It's usually a quote up here and then she'll write something. Every issue parents of kids with special needs may face, having to do everything from school to, you

anticipatory grief, the grief of getting the diagnosis, all of that. And she had an incredible piece about death for people like me where, you know, it's coming. You're trying to imagine it. You're trying to prepare yourself, but you can't. I would read that a lot. you know what? I've come to the point in my life where some people might say, you know, you're, you're so morbid. What? That's really more. And I.

now can say, this is the way my mind works. And instead of saying, gee, Jodi, you've got up, your mind is dark, whatever. just say, that's the way my mind works. And I'll have to learn how to deal with it because it's not going to change. I just have to understand it and accept it. And that's how I got through it was just reading. that, as you say, the present moment became, it was always precious, but I could feel it.

I could feel the present moment of her with us. Even being in the hospital, living in the hospital with her at times, I appreciated her medical care. You know, we are at this incredible children's hospital. You're working with residents. Some of them are going into pediatrics. Some are just passing through pediatric residency and they're going to go into a specialty. So, you know, they're learning from you because pediatricians have to work obviously with the kids.

but they have to deal with these families because that's a huge part of your job. And I, for whatever reason, I loved being around the doctors. I loved trying to let them understand, look, know Louisa looks bad and I'd always have pictures of her. Here she is sitting up in her wheelchair looking like a really happy kid. it was very, it was very meaningful for me.

Yeah. And one note on the topic of being perceived as morbid, when you're looking from the outside in, you haven't experienced something, you haven't had to live a life and be a caregiver to a person with special needs, when you hear these conversations, maybe for the first time, maybe in this context as an outsider looking in, sure, from your perspective, it might sound a bit morbid, sure. For the people going through it,

It's every day is something that it comes up. It's not necessarily that that's the only way the mind works. It's that there is a level of daily acceptance for what is happening, for what will likely happen. denying it, ignoring it, pushing it under the rug serves absolutely nobody. So by the time somebody, a griever or somebody experiencing the anticipatory grief verbalizes this out loud.

it's because they've had to do some internal work above and beyond what most people would ever expect. So by the time one can actually say the thing out loud, it's not morbid. It's, if anything, life-affirming, it's acceptance. And there is a tinge of hope in there that even if we face the unimaginable worst case scenario, the thing we never want to experience, we are trying here to make the best of the situation. So I just wanted to...

give that perspective because everything depends how we look at it. And so what to one person is morbid, to another person is acceptance and love and hope. And I wanted to put that in there.

You said that with such clarity. Thank you. Yeah

Thank you. on the topic of loss, grief is not just the physical loss of somebody, it's also little losses in between here and there. So everything you had to go through from the beginning, even though there was a lot of joy, there's also that daily grief commingling with the joy. And I found it interesting that you called yourself an accidental fanatologist. So in what ways has proximity to death redefined your sense of meaning or purpose?

How did that shift your worldview and how you show up in the world?

No, I think back, I think for some reason I was interested in the subject of death so many decades ago, way before getting married and having children. I remember reading the Elizabeth Kubler-Ross book that everybody was reading on death and dying. I think that's, as I say, that's the way my mind works. I'm drawn to these deep realities that we have to be human.

I want to know about them. want to think about them. want to wonder how do people live? How do people go through that? Before you've gone through almost anything, if you're lucky, growing up in a safe, mostly safe environment, and when you start to see what goes on and you wonder how do people do that? So I was always drawn to that. And so yeah, I jokingly say, Thetatology, study of death.

I just got very deep into death and things all around it. I I have books upstairs having to do with the modern death movement, which is people that want to kind of do what people did decades ago for natural childbirth, bring it up to death. There are better ways for people to deal with after death care and for people that

do want to die at home, it's not for everybody, laws around what one can do if you have your loved one in your home. And I'd be in the hospital with Louisa and I'd talk to the chaplain and I'd say, okay, what happens if a child dies here at the hospital? And I wanted to know everything from, how do you get out? It's the most beautiful hospital you can imagine. How do you get the child?

in the hospital bed. You put them through the hallway? What happens? I wanted to know everything. She told me, well, this is what happens. We do this, we pull the sides up a bit, we go this back way, we go into the elevator, blah, blah, blah. Because I didn't want any surprises when things were going to go bad. so that by the time

when this terrible event happened very suddenly in the middle of the night, I knew we don't have to do anything for 24 hours. I knew what the law said. My friend called the little local funeral parlor that's walking distance, which corroborated my research. I find that that is very helpful for grieving families, at least.

And again, I say it's personal. Some people might be like, call the funeral parlor, get the body, the body. But to me, I like an old fashioned way, which is this is your loved one. They're there, they're in your home. It's helpful, I think, at least for people like me, and I'm sure other people. There's no rush.

this sacred, sacred time of being with your loved one. My parents were here within five, six, let's say seven hours, they got out here from New York City. And to have that time where nothing had to happen, it was very powerful to be able to know that I didn't have to do my research then. I knew what could happen. And Louisa did die at home.

It's good to know what can happen. It's like, you you don't want to be for yourself in a hospital and not know what you're dealing with with your own illness because, you know, doctors get so specialized. They'll say, they won't even look at your kidney function. They'll say, your lungs are looking. We have to know what's going on because these, there are decisions that are good and some decisions will cause, you know, more suffering. So I'm very big on that.

reading about medical stuff, including my casual study, but deep study of death and after death care. Because then you can be calm when it's happened to various family members. I've been at a bunch of these deaths and I find it extremely powerful to just be calm and be with your person. It's a sacred time.

And yeah.

Truly. It is a sacred time as much as birth is sacred. Somebody's passing is sacred. And in recent history, it's been very sterilized and almost transactional. And I remember, well, I won't go into too many details, but when my brother passed, said, I don't even know the person that took his body. What just happened? And there was something so, it felt like we were robbed of an experience. I'm not even sure what the alternative could have been. It was unexpected all. But what I've learned since.

is like you said, there is this movement growing about people who are curious about what the alternatives are. And once you learn, you're empowered to make better decisions and to go with dignity and grace and have this, it could even be beautiful. It could even be a beautiful send off.

can be. And I think it's very healing for maybe not everybody, but for many people, think it's a much more healing way. It's the way we did it in the old days, you know, that you'd be laid out on your dining room table. think you just, you took care of your own, you took care of your people. we've lost, most people don't know.

and then they panic and they're also in grief and they think, you have to call the experts and.

which adds to the suffering. That's also an element. I always say the pain is the fixed element that our person passed. You can't undo that. There's no fixing that. But you have control over the elements surrounding that event, at least some degree. And this is one of those areas where you could have if it's something you'd like to lean into. And I'm curious, do you help people nowadays with their planning or at least to help ease some of these conversations?

I haven't done any of that. I really wouldn't know how to go into that. I've been in situations where it's a family member and I said, can I be helpful? And I've been able to kind of direct what was done in terms of the loved one being staying longer in the bedroom as opposed to being removed an hour later. So that made me feel very

good that I could make some of those decisions. But yeah, no, I love the idea of being a helpful person. just wouldn't, not good at self-starting and knowing how to pursue something like that, but it's a very interesting area that, you know, there's a lot of, one can be helpful, one can be a mentor, I guess, in getting, in helping people get through that, you know.

And it makes a difference. And I'm also curious, you had to balance your dreams as an actor, your opportunities that came to you at one point in the midst of Louisa's declining health. So for somebody who's dealing with this similar situation and trying to decide how much do I prioritize my life or do I prioritize my life, how do you balance that? Maybe some thought process that you can offer here.

I don't think I have a good answer to that because I think that's the only thing that I have. It's painful to me to think of the decision that I made thinking, no, this is going to be okay. You know, I'm just going to go for six months and I'm going to come home every three weeks because we change cities and every time we change cities, you have three days off and it's all in the West. so I

made this decision to go on that tour. And you just don't know what's going to happen. And on the other hand, can't never leave your house. It was very, that's something I have to just accept and live with. But it's hard to figure out those issues because you're also, okay, medical insurance that comes through your union work.

I don't know, other things that you're thinking, well, I'm going to be really responsible and I'm going to make this level of money, which is really important and keep the insurer. So it's all these great reasons and it was all supposed to work out timing wise. And right before I left, she had been ill with another pneumonia and I was very specific with the doctor. said, okay, she's been sick a lot. Can you please tell me? I mean,

What do you think? Are we at the end here? What's going on here? And the doctor knew I was asking a frank question, so she was very honest. She said, well, no, she's okay. know, most kids like Louisa, they go till about their 21 and then the lungs poop out. And I thought good on her because that's what I wanted, something very real. I didn't want any fake hope. But then I thought, you know, six months, I'm going to be coming back every

four weeks, every three weeks. That's, hard. You know, that's a hard one to.

Yeah, and clearly there is no easy answer. It's one of those things that this is how it played out. If somebody's in a similar situation, just trust that you will know in that moment or at least in that moment, trust that you're doing your best. It's a very personal thing. And on that note, there's a line in your book about condemning yourself for even your own suffering. So how did you work with or through that kind of self judgment or have you? Or is that still something that lingers?

I've read a lot of, or decades and decades, books on psychology issues and things that humans suffer with, their mind, the thoughts that go through your head, how do you deal with them, thoughts that are self-loathing or self-critical. And for some of us, it can be a terrible struggle sometimes. So I have sought

the help of psychologists at times in my life to be able to really verbalize, okay, what is going on here? I'm doing so much attacking of myself in my head. It's very unpleasant. think a lot of times just taking the light of your consciousness and shining it on that thing and having somebody there to bounce back and say, wow, just listen to yourself. is that your

essential voice. Nobody wants to blame the parents, but maybe there was some attacking here. Maybe you've kind of internalized. just taking, having those conversations were helpful. Were helpful. It's just some of us, I don't know what that is. Some people, they're great friends. They always support their friends. They would never say anything nasty to their friends, but to themselves, sometimes. Jesus, it's like, you know, you're this

horrible person. It doesn't make sense. don't know biologically why, what is that in human behavior, why that happens. But I'm doing quite well. know just from time to time, the little voice will pop its head up.

Yeah, and I think it's a little bit more common than we may realize because like you said, we're really often better at being gentle and kind and extending grace to others than we are to ourselves. And I always encourage people to include yourself in that equation. And if anything, begin with yourself because when you pour into yourself, it spills over to other people, but it's not easy. And I, you know, also...

Therapy is wonderful and I'm a big fan for many reasons, whether you've been through a traumatic situation or not, because we're in this thing called life, and it's not easy, and wires get crossed here and there every so often, the longer we live, And, you know, it's important to also integrate the experience of loss, the physical loss of Louisa, and life thereafter, your hopes and dreams, and then the reality. So inter-rating all of that, I think, is a very important part of the process of grieving and then life in general.

You also mentioned the Jizo ceremony. So can you tell us about the significance of that ritual? Why did you choose that one and how it shaped your grieving process?

because I'm curious, I guess a curious person and I seek things out. And now that we have this internet for as long as we've had it, I think I was on tour back on tour and I was looking for things having to do with death and dying and grief. And I don't know how I found that, but it popped up. It's, a Zen center that's north of San Francisco. about.

probably an hour plus from my house. And it just said, ceremony for children that have died. And the timing was such that I was going to be home and I've always been a bit of a searcher with my spiritual life, which has always been not quite clear, but I've always been interested in things. And Buddhism has attracted a lot of us. I'm not a Buddhist, but I've read a lot, I love a lot of the Buddhist philosophies and I've read a lot of the

I would say almost probably mostly the great American Buddhist teachers. And I went up there and you're supposed to bring some red fabric, scissors, a couple things you bring. And it's just, it was a beautiful ceremony for about 10 of us who had lost children. And I just, found it very moving and powerful to

share that time with other people. We were then instructed that we were going to write special things having to do with our child, put this little paper inside the red fabric. You we had needle and thread, we sewed up the red fabric. Then there was a special tree, like the tree of remembrance. I think I've always been searching for ritual, you know, that I could partake in.

So for that, was a very, very beautiful experience.

What's the importance of ritual in your life?

What is it? I don't know because I didn't grow up. have my, one side of my family is Jewish. One side of my family is Christian, Episcopalian, I guess. We went to church, never really. We celebrated Christmas. Easter was Easter eggs. So I've never had, we didn't grow up with any religious ritual for whatever reason.

For many years, I'm just fascinated with the rituals that are out there that people are involved in and that have been part of their lives in a meaningful way. It's like a hunger, maybe. I don't really know how to say it other than that. So, you know, I have a little tiny backyard shed, my candles and my pictures of...

Some things from the Eastern religion, let's say like Buddhism, some things from Christianity. I've just, I've been bobbing on the sea of all of this for a long time, but I've been very drawn to watching the rituals that people do participate in. I think because it has something to do with having meaning in your life.

Thank you. And I deeply resonate with that. And rituals tend to serve as an anchor in the good times and bad times too. So there's that, you know, that part that when life feels very untethered that could always come back to center in a way. And many of them are just beautiful and symbolic. there's very, it's a beautiful act of love that where we could channel our love as well. On the subject of, you know, your background, because you are, you know, Episcopalian, Christian.

And also you married a Polish man and initially your family didn't want him in the family and then they fully accepted him. So it's been this back and forth, this dichotomy, maybe bittersweet at some points of, you know, living the this and that life, like a little bit of this, a little bit of that, always with that nuance center. Grief is not this or that, it's this and that. And I envision it as a Venn diagram where we're living in that middle, in that like messy middle, that nuanced middle of life.

And that extended to, I may, your relationship throughout the years in your marriage. Eventually you incorporated an extended family, yet it worked for everything that you endured and everybody came together, especially after Louisa's passing. Share whatever you like as much or as little as you like about that.

I guess my husband and I are now divorced. We, at least from my perspective, are very close. We do all the holidays together with him and his partner, me and when my daughter, my younger daughter comes to visit, Christmas, Easter, it's beach walks, everything. The marriage was not working out and I would say it had nothing to do with multiple partners. It was.

Choosing to live in the same house, but separating the romantic love out of the marriage because it just couldn't be anymore. And we had, again, a balance of a balancing situation where we just had to accept that this is the way it was. I am not the kind of person who's going to say,

You know, get out, I got needed more. You I couldn't do that. I just couldn't do it. So we just lived side by side. The romantic part was gone and we just made our way. And my daughter, I'm sure has some bitterness about us not being more honest with her to say really what the situation was. But to me, it was so private. It was difficult. just, I didn't really want to talk about it.

It was a lot at once too.

was a lot, but I feel very lucky that nothing ever had to, I just knew don't blow up this. Don't demonize my now ex-husband's partner because she's a wonderful person. She loves my children. That's the way things worked out. It's not what one had wanted, but

This is reality and I wanted to accept this is reality. That part of my relationship is over with my husband, but we are going to be in the same house taking care of the children. was amazing with Louisa and Dora. We're not going to do something where, now he's got to live 40 miles away and visit and it didn't make any sense. So we stayed.

legally married for many, many years. And now we're legally divorced. I just talked to them the other day. They're both in Poland for the summer. And I just feel very lucky that it didn't blow up and become a bitter thing. could say, it's sad the marriage didn't work. It's reality. It's just, it's what happened. We had a lot of things against us.

We both come from, you know, wacky families, strange marriages, and we tried, we really tried, but it just, that thing didn't work out, but it worked out to have familial love for one another.

Thank you for sharing that and you know, it reminds me of even just the title of the book Things don't have to look a certain way to function for their intended purpose for their intended time We're not guaranteed right an outcome. We're not guaranteed a life that will look any certain way And sometimes more often than not, mean I talk having these type of conversations all the time So I'm very attuned to how many people have to face realities They were not expecting they didn't want that they had to adjust to and and it's one of those things that

I'm very aware of it, but just because your life looks different doesn't mean it can't be beautiful, joyous and harmonious. And harmonious in the sense that it also includes sadness, it also includes the loss, and it's still beautiful. So it sounds like you made it work to the best of your ability and you both had a deep respect and love for each other in the sense we're going to be partners at the end of this and we're going to do the best, imperfectly, we're going to do it the best we can. Yep. So I saw that and I thought it was very...

beautiful the way you shared that in the book. Thank you. Thank you for that. On the topic of Dora, since we talk a lot about stippling loss, I'm curious, why did she understand about all this as it was happening? Does she understand that she might lose her sister? What was her relationship with Louisa and then after her passing?

I've said to Dora years ago, I said, I know what I went through as a mother, but only siblings that have lost a sibling know what you've gone through. And if that works out for you to connect with them, that would be, I think, really wonderful. When she was growing up and then Louisa's health went bad, Dora was like, I didn't want to sit down and say, Louisa is very likely going to die young.

I didn't want to throw that out. So I would say other things more subtly, but that I thought conveyed that sense, was, Louisa is very, very sick right now. I would say it like that. And it was hard to know exactly what to say or do. It was very stressful and difficult for Dora because when Louisa was in the hospital, either I was in the hospital or my husband was in the hospital.

So we had these wonderful friends of Dora's. The parents would say, we'll take Dora away for the weekend as we're going up to the mountains or something. And Dora, I think, didn't want to tell her friends really how bad things were. So she did a lot of hiding probably about it all. Her relationship with Louisa was very unique and special because that was her older sister.

talked about her, let's say publicly, because she's a performer now and a musician. And she's put things on her Instagram about her sister, on anniversaries like Louisa's birthday or the anniversary of Louisa's passing. So it's very, very unique because she would talk to Louisa. Louisa couldn't talk to her, but she could understand her.

She had a great, Louisa had a huge sense of humor. Sometimes Dora would be so mad at her because if Dora was throwing a fit about something, that could crack up Louisa. She would think it was hysterical. it was a relationship of sisters, but that was very, very unique. And we would all lie on Louisa's futon and watch television and watch all the movies that we had. there was, it was a wonderful time.

Well, siblings have our unique language that we speak with our siblings. have no doubt that Dora and Louisa had their own things that they shared only amongst each other. We're getting to the end here. This has been a fascinating conversation. Thank you for your openness and your, you know, your willingness to share. Is there something that I haven't addressed that you would like to include in this conversation?

Well, I think we've covered pretty much right now. can't think of anything right off the top of my head. So I just think you, you know, you've gone in right in, your, your, clarity and your wisdom are really beautiful. so I really appreciated that.

I appreciate you as well. this is not an easy story to read, but it's beautiful and its own right. It's bittersweet and it's real. And I love the way that you wrote the mini memoir. I thank you for introducing me to the concept of the mini memoir. And I encourage anybody who's either facing this reality or wanting to support somebody facing this reality to pick up a copy. Obviously, you know, in grief, if in the loss of somebody, there's sadness, but there's also a lot of wisdom and there's a lot of comfort.

in seeing how somebody else navigated the situation in their life and how everything turned out regardless of the outcome. So where can people find information about your work and where can people get a copy?

I probably the easiest way to get the book is probably through Amazon. know people aren't big, you some people don't want to do it through Amazon. So I bookstores sometimes have a way to order it on their own. I have an author website having to do with the book, my name jodygelb.com. I would say the author website is the best thing right now.

Perfect, I will link that in the show notes. I closing thoughts here. How would you like the world to remember or know Lueza?

Lueza had a joyous life. It was this huge gift. She just was a happy person. She didn't have a sense of herself being anything, nothing wrong with her. She was happy. She had a sense of humor. She loved life and she gave us a joyful, joyful life with her. was extraordinary.

And I hope that anybody struggling with any of these things can find those ways of enjoying moments and that your child can have that. Although, you know, it doesn't happen with everybody. I know that. But we were very, very lucky for some reason. We were very lucky that her mind was so full of joy and understanding.

for life.

book includes some family photos and some photos of Louisa. And what I noticed when I looked at them is there was so much life in her eyes and in her smile. It was palpable. She's being with life and love and you don't have to be, you know, fable-bodied to convey that. She was perfect in her own divine right. we honor her through this episode and through these conversations and through obviously your memoir.

So thank you very much for sharing her with the world and your experience. And final question is, what would Jodi today tell Jodi after Louisa's passing?

That's, that's a real tough one. I don't even know what to say. I would say just keep, back then keep writing because this book, which I didn't really, I mean, the book took me roughly 22 years. I slipped in a back door of not being a writer and I would quit for years and then I'd come back to it. And then I, I'd give up because I had no hope. And then I would have hope. So.

I would say just keep going and you will find your way. I was very lucky I kept going. Thank you so much.

Beautiful. Thank you, Jodie. It has been an absolute honor. Thank you very much for being here today.

Thank you, Nina, I really appreciate it.

That's it for today's episode. Be sure to subscribe to the Grief and Light podcast. I'd also love to connect with you and hear your thoughts and your stories. Feel free to share them with me via my Instagram page at griefandlight, or you can also visit griefandlight.com for more information and updates. Thank you so much for being here, for being you, and always remember, you are not alone.