Is It Okay to Smile Again? Overcoming "Joy Guilt" After Loss with Lisa Boehm

What happens when happiness catches you by surprise after a devastating loss... and guilt immediately follows?

In this episode of Beyond the Loss, I sit down with author and grief advocate Lisa Boehm for an intimate conversation on navigating one of the most painful, unspoken layers of parental child loss: "joy guilt."

Many bereaved parents describe a moment when the sun feels warm or a smile breaks through, only for an inner voice to ask, "How can you feel joy when your child is gone?" Lisa shares her personal turning point in discovering that healing isn't about leaving your child behind. It's about recognizing that you don't stop loving your child when you experience happiness, and that your heart is vast enough to hold both profound sorrow and genuine peace together.

In this episode, we discuss:

The Emotional Backlash of Peace: Understanding why unexpected moments of happiness can trigger intense self-blame.

Dismantling "Joy Guilt": Learning how to smile without feeling like you are diminishing your child's memory or presence.

The Coexistence of Emotions: How to practice holding grief in one hand and light in the other.

Living as an Act of Honor: Why allowing yourself to heal and experience hope is a tribute to your love, not a betrayal.

Connect with me:

Website: https://sharonspano.com

Podcast Page: https://sharonspano.com/podcast/podcast-beyond-the-loss/

YouTube: youtube.com/@SharonSpano-BeyondtheLoss-Host

Substack: substack.com/@drsharon

Interested in Being a Guest on Beyond the Loss?
Apply here to share your story:
https://sharonspano.com/podcast-guest-beyond-the-loss/

About the Show
Beyond the Loss: Life and Identity After a Child Dies is a podcast dedicated to helping grieving parents, bereaved families, and professionals navigate the emotional, relational, and identity shifts that follow the death of a child. Through compassionate conversations and clinical insight, we create space for healing, understanding, and honest reflection after profound grief.

Transcript

Copy Transcript Copied

SPEAKER_00 0:09

Welcome to Beyond the Lost. This is a space for parents who have lost a child in any way at any age, where no grief is ranked, explained, or excluded. I'm Dr. Sharon Spano, developmental coach, systems thinker, and a parent whose life was forever changed by the death of my own son Michael. What happens when life changes in a heartbeat and the world around you does not know how to meet the grief that you're now carrying? I'm Dr. Sharon Spano and welcome to another episode of Beyond the Loss. Today I'm speaking with Lisa Beam, whose 17-year-old daughter Katie was killed in a car accident. Since then, Lisa has become a voice of support for bereaved mothers, helping parents navigate life after child loss with honesty, compassion, and hope. Lisa Beam's life changed forever when her 17-year-old daughter Katie was killed in a car accident. Through her own grief journey, Lisa discovered how uncomfortable our society often is with death, loss, and grieving, and she made it part of her mission to help change that. She's a certified grief educator trained by David Kessler, the author of Journey to Healing, a Mother's Guide to Navigating Child Loss, and the host of Child Loss and Grief Support for Moms podcast. Lisa is also an international speaker and facilitator, helping individuals and organizations navigate grief, burnout, and life's hardest transitions with greater compassion, resilience, and practical support. So, Lisa, thank you so much for being here today. I'm really looking forward to our conversation. And I'm just honored to have your time because I know how busy you are. But before we begin, I thought maybe I'd love for you to talk uh before we get into your work a little bit about Katie. What would you most want listeners to know about her? Not only about what happened, but about who she was.

SPEAKER_02 2:13

Katie was a spark plug. Uh, she was a diva. She spoke her mind. She wore her heart on her sleeve. But as much as she was that saucy, spicy girl of mine, she always cared deeply about others. You know, it's funny, funny, strange how stories come to light after we lose a loved one that we didn't realize. You know, she talked somebody off the ledge in her high school bathroom who was contemplating suicide. Oh my gosh, and you never knew? I never knew until that young lady showed up at my door one day because she felt she needed us to know that. I'm so grateful for her. But that's the person Katie was. She was just a bit of a crusader, um, you know, beneath her her teenage sparkiness. And um, that's what I want the world to remember about Katie.

SPEAKER_00 3:12

Yeah, that's really beautiful. So when you think of her personality and and her relationship, your your relationship with her, I mean, I'm sure there are many, many stories that you share, but is there any one specific story that beyond that one that you just shared in terms of something that would speak to your relationship, maybe something that you love to do together or, you know, whatever that might have looked like?

SPEAKER_02 3:36

Uh Katie loved to travel, you know, and uh for spring break in her grade 12 or 12th grade year, she chose to spend that with her grandparents in Arizona. And Katie had one of those loud voices that could be heard, you know, seven aisles over in the grocery store. And my dad told me this story, but she was floating around the pool, you know, with all these senior citizens and just declared to herself, but ultimately the world, I can't wait to retire.

SPEAKER_00 4:15

That is so funny, you know. And isn't it beautiful how we remember certain moments and certain things that our children say? And I was with someone at dinner the other night, and it was so lovely because they lost their son in a hiking accident, and we got in the conversation because somebody was asking me about the podcast, and I could immediately see, you know, he kind of dropped his head, and it's still very, very painful as it is for all of us. It comes and goes right in in moments, but he said something really lovely. He said, We try to focus on his life, not his death. Yes, do you find yourself doing that as well in your work? 100%.

SPEAKER_02 4:56

Yeah, absolutely. You know, I always say Katie's life was short, it was only 17 and a half years, but it was more than that moment in time when she died. And I don't want her to be defined as the girl who died in the car accident. There was all these other aspects of Katie and her life.

SPEAKER_00 5:20

Right, right. What do you do if it if it I'm imagining there must be moments where you think about, given who she was and and that personality that she describes so beautifully, what do you do to pull yourself out of perhaps moments where you think about what her life could have been, what she might have contributed to the world beyond 17?

SPEAKER_02 5:42

You know, I'm gonna actually flip that around a little bit because I think I choose to believe that she lived a full life in those 17 and a half years, and that whatever the purpose was here on earth, she accomplished it all. You know, there were moments, um, the last charge of what would have been her grade 12 year. So she passed away in December of her grade 12 year, you know, and watching her friends get ready for grad and you know, get their acceptance letters from university and all this kind of stuff. Oh, for sure. My heart was like sure. Katie was the kid that, you know, had an entrance scholarship right like six days after she applied for nursing school. Uh she was destined for great things. And I think she would have made an amazing nurse just because she was kind of blunt and she was passionate at the same time. But then I would say to myself, you know what, Lisa? She Katie got to bypass all this baloney, she got to bypass all those final exams, she got to bypass all the stresses of life. She got to graduate early.

SPEAKER_00 7:01

You know, it's such a beautiful perspective. Yes, go ahead. I'm sorry.

SPEAKER_02 7:05

Uh just perspective and and perspective change has been a big part of my journey and call it maybe false thinking. I don't know. Maybe people poo-poo that, but to me, the mindset and the perspective shifts are so powerful.

SPEAKER_00 7:26

Yeah, and they don't come easily, I think, especially in a in a tragic accident like this that was so sudden. I I again overheard my husband the other day. I think I spoke about this last week, where uh we were at a birthday dinner, his birthday actually, and he was sitting at the end of the table with another group who who, you know, were talking apparently about my son. And and I I remember him saying, I heard it kind of in a distance. He said, you know, I wondered for a long time why Michael had to die. And then I realized that because of our foundation, that we started in his name, and and my listeners know that we raise money for persons with disabilities. He said, I now know there's uh over 120 some people that have a community and somewhere to go every day where they would have been sitting home alone, depressed or whatever, with no support services, no, no, really no life, which is why we started this whole thing. And he said, When I when I think of that, I think of the difference that he's made beyond what he did when he was alive. It's even more so um in his in his passing that he's uh impacted so many people. But I think, and I wonder what you might say to parents out there, either in the early acute stages of grief, who haven't maybe had that perspective shift yet. Or, you know, sometimes parents can stay where they are for a very long time. And certainly you and I both agree that there's no right or wrong. We're not trying to suggest people need to move on in any certain time frame or they need to quote heal. But how how did that perspective shift come about for you, if you if you can recall? And the second part of that question would be what would you say to a parent who feels like I just can't go there? I mean, I'm just stuck in the anger or the the sadness or you know, whatever whatever it is that they're feeling that feels so debilitating for them. That's a full question. That's I tend to to put a lot of questions together and what my mind connects everything. So the first one is when when did did you notice when that perspective may have shifted for you?

SPEAKER_02 9:35

Well, I think I'm going to answer both of those questions with the same answer, and that is therapy.

SPEAKER_00 9:41

Okay.

SPEAKER_02 9:42

I have had two wonderful therapists on my journey. And what I appreciate about them, Bull, is that they called me out of my BS, meaning the stories that I kept telling myself, or the why me, the what ifs that I think every grieving parent gets stuck in. And that's normal. That's right, normal. And then I also want to address this idea of being stuck, and I I struggle with that because I truly believe that feeling is healing. I think we need to cry to tears. We need to feel the feelings, even if we're fooled by society or I don't know who anger's bad, or you know, the depression or the denial or any of that stuff that we're feeling, they're feelings and they're our feelings, and we cannot ever move in a different direction, forward, whatever you want to call it, until we go through all of that. It's part of the process.

SPEAKER_00 10:51

And yet I agree. Yeah, I agree. But then there is something that you and I both are aware of called prolonged grief. And I and I maybe let me let me make an assumption and a distinction in that context is that I think sometimes I run across parents who may have not been able to restore their life or regain some sense of a healthy life in what I'm calling the long after, because they haven't done what I'll call the work in one way or another, whatever that is for them. So for some, it's just, you know, I need time off. I'm gonna go into nature for whatever amount of time I can. For others, it's therapy. For some, it's just maybe being in a grief support group or whatever. Um, so what I'm referring to is the the family system being forever, you know, just really uh feeling a sense of being broken and fractured and and not able to recover or restore uh a sense of living, like a commitment to mourning. And I think when I talked to you before, I talked about in my own mind who one of the things that I did early on was I made a distinction between grief and mourning, knowing that I would grieve my son's loss forever, but I would not engage in rituals of mourning forever. And I didn't necessarily put a timeline on that. And the words don't necessarily mean anything that different, differently, but they did to me. Like I made a decision, like I'm going to have a life again. Uh, and somehow, you know, that, and I don't I can't even tell you when it happened or how it happened, but it was a decision uh that came about in one moment, but it was a gradual process of actually stepping into knowing that it was okay to live again, to have joy in my life again and meaning in my life again, uh, and all of those kinds of things. So, what would you say to that? I mean, again, you know, with those distinctions in mind, again, to a parent out there uh who may feel like, you know, there is no life for me beyond this this tragedy that has struck our family.

SPEAKER_02 13:04

I think I might get a lot of disagreement and pushback on this, but I do think that living again is a choice. It's a choice we make. I make it every single day. And and I really love the way that you have pointed out the distinction between grieving and mourning. And yeah, 100%. I mean, I'm 10 plus years out. I grieve Katie every single day. I always say I wear it right here, it's always right here, and sometimes I have to put it over there. But I would also say that I'm no longer mourning her.

SPEAKER_00 13:40

It's a different thing. Like, do you remember? Um, I'm sure you've had this experience, like the first year on the anniversary, you relive every second. You know, for you it was probably when the phone rang. For me, it was, you know, when when the doctors came in and we were like in a code red kind of thing because we were in the hospital, you know, and I can I can know the time, I know the time of everything that occurred in the the last 17 days. But then over time, a lot of those um minuscule details kind of started to fade. And and then I remember one day noticing, oh my gosh, it's it's all not on my mind all day long. Like I actually have moments where I work without this being in front of me or on me, the weight of it. Do you recall such experiences like that?

SPEAKER_02 14:34

I'll answer that with a story, actually, if I may. I think it was a yeah. My husband says I've got the timeline wrong. But anyway, I'm gonna say it was sometime in the first year or two. My husband and my son and I would travel as part of learning how to become a family of three, which sounds ridiculous to anybody who hasn't lost a child. But we could go from a family of four to a family of three, it's different. And we had to learn how to do it. And we found that when we traveled, we were just together, right? Because when you're at home, even if you're together, your teenage son is off playing video games or out with his friends and your husband's cutting the grass and all the stuff. So traveling was just a really great way for us to reconnect. And I will never forget this day. We love to hike, and we were in beautiful British Columbia, Canada, hiking through this gorgeous redwood forest with massive trees. Like I almost expected little fairies to jump out between the trees. It was just so magical and mystical, and the sunbeam, you know, kind of dabbled between the the trees and the and the um bits on the ground. And this trail, unbeknownst to us, spit us out onto a beach gorgeous, like postcard beautiful. And for the end of July, there was nobody on this beach. So we walked from the forest edge to the water edge. And I remember picking up a stick and reading Katie's name, and there was a heart-shaped rock there, and and my husband and son started walking down the beach, and I just stood there for a moment, and I was starting to trail behind them. And I just relished in this moment. Um you know, on the left hand side, I had this gorgeous redwood forest, empty beach, on the right hand side. I had the sun dappled sparkling ocean water, the sun was on my shoulders like a warm blanket, and I just remember tipping my head up to the sun, drinking all of this in for a moment, smiling.

SPEAKER_00 16:48

Joy. Joy, feeling joy again, which is so difficult. Yeah.

SPEAKER_02 16:54

But what followed quickly after was the punch in the gut and the little the little person on my shoulder, you know, chastising me. What is wrong with you, Lisa?

SPEAKER_00 17:04

Yeah.

SPEAKER_02 17:05

Well, what kind of mother are you? Your child is dead. How can you possibly experience joy? But in the very next second, kind of going, wait a minute, wait just a second here. I did not forget, Katie. I did not stop grieving in that moment of joy. And I kind of realized that I could carry grief in one hand and joy in the other. Neither one of them canceled each other out. No, you know, and I've also come to learn that grief is like a suitcase or a backpack. And, you know, some days it's really heavy, some days it's light. We carry it with us every day, but we can experience different emotions at the same time. I think even prior to grief, I realize, you know, we don't experience our emotions in silos. I'm not just happy on a given day. I'm probably frustrated about work, and I'm probably, you know, depressed that my grandmother just passed away and all these other things, but maybe my dominant emotion is happiness. Anyway, it was a huge pivotal moment for me that just gave me permission to say, I can feel joy again, even as a grieving mother.

SPEAKER_00 18:20

And I think that's such an important message for us to offer family members because I talk about it often as non-dual thinking. You know, and I the example that I use is I I certainly like you and like any other parent, I miss Michael, you know, daily. It comes up constantly in my mind. I dream of him most every night. It's just amazing. Um, but I don't miss the stress of having a medically fragile child and the worry. And it and certainly I don't miss the last four years of him being hospitalized and suffering the way that he did. Uh, but I have those moments like you described, where you know, here I am in the mountains of North Carolina this morning. I get up early and go to the gym, and it's glorious outside. I mean, the the air, the sunshine, the trees, the birds, I'm I'm just like so blessed to even be here, I can't even believe it. And then there's that thought that I did a whole show on this last week where I was talking about feelings of guilt and shame and you know how those moments can come up of, you know, wrestling with the questions, the what-ifs, as as you alluded to. But then there's a moment like this morning where I tell myself he would want this for me. He would be so happy that his dad and I are living in this life that really, for all intents and purposes, is stress-free in comparison. You know, not that we don't have the daily stressors of our businesses and whatnot, but by comparison, it is nothing. And I know he would want that for us. And I'm sure Katie would want that for you and your husband and your son as well. So these are moments that we grapple with and, you know, come to make meaning of in each in our own way. I'm wondering, I think you and I touched on this a little bit, but because you know I'm so interested in family systems, uh, that is a big part of my work, corporate and family systems, and the dynamics of those systems. I'm wondering how your son is doing and what that transition must have been like for him. He's younger, if I remember, is that correct? That's right. So, how old was he when Katie passed?

SPEAKER_02 20:34

He was 15 years old, which is a horrible fragile age on a good day. Right. Um, he was my child that was giving me gray hair already at that age. You know? Um, and I remember sitting across from the officer who came to our home that night to tell us Katie had died, and my son was sitting to my right. And I remember turning my head to look at him and thinking, dear God, this is going one of two ways for this kid. Uh and it went worse for probably a good two years. He coped in the worst way. He coped with all the unhealthy coping mechanisms. You know, I say even as a grown adult, I think I was 46 when Katie passed away. And even in my grief tool belt, my tools were limited. Right? Even as I said, nothing prepares us for this, for sure. You know, I had worked in healthcare for 25 years up to that point in time. I thought I knew a thing or two about grief. Turns out I didn't, but I felt like I had a few tools in my tool belt. But a 15 year old boy I I I say he had anger and pot in his tool belt. That was it. And and even you know. I think a couple of years ago he and I finally had a conversation about this, and I said, you know what, Ryan? I deserve or I you deserve an apology from me because all I saw was anger and for your years. And now I recognize that that was great. It was great. Right. You know, um, he's in a terrific slot right now. I'm so darn proud of that kid. You know, um, I think one of his turning points for him you know, he's always been my kid that's had to learn things the hard way, that's had to figure things out on his own, even though his dad and I are more than happy to, you know, help him. He doesn't want the help, must do it his own way. But a couple of things. One is he became super interested in cars, not just driving them, but fixing them, taking them apart, rebuilding them, making them better. So that was like a turning point. And then different kids started showing up in my garage, which were which is a good change. And then about grade 11, he said to us, I'm not going to university. To which my husband and I just about had a heart attack because that's the only path that we weren't familiar with. And I said, Okay, pal, but there's no living on my couch playing video games when you're 25. So figure it out. And he did, and he figured out that he wanted to work with his hands and he wanted to problem solve in a different way. Anyway, he decided that he wanted to become a journeyman mill right, which he has done. He is absolutely killing it out there. He bought a house completely on his own when he was 21. He, you know, out earns his father now. Uh, he and he's just really secure in who he is. We've talked about this a number of times, you know, say you've been kind of through the worst that anybody can go through. I think you can pull yourself up from you with your bootstraps anytime you need to, because you know how. And he does.

SPEAKER_00 24:17

Now, is he is he um when you when you talked about therapy, did you do family therapy? So he was part of all of that.

SPEAKER_02 24:25

Well, we'll let you know a little bit about that. So one of my coworkers lost her husband at a very young age, and she started going to our local bereavement center, and she said that was a life changer, Lisa. You have to take your family. But a couple of years had passed since she had been there, and the dynamics of the of the center had changed. Anyway, I dragged my husband and my son there, and after two visits, and I have to say we didn't have a terrific therapist, but they said, Why are you making us go? So I thought, I'm not gonna make you go. But if we fast forward seven years after Katie died, my son was with a lovely young woman. I thought she was the one. I thought for sure they were going to get married and all things, and she broke his heart. They broke up. And at the same time, Ryan lost his grandfather, our big family pet, who had kind of been his therapy dog, you know, through Katie's loss. And then this this magic or this major heartbreak. And that's when he came to me and he said, Mom, I think I need to go get some help. I said, I think you do too, pal. And it was his choice. So of course, you know, power behind that. Um, and I don't, I don't think he went, I don't think he consistently goes, but he goes back when he needs to.

SPEAKER_00 25:52

I'm so glad to hear that he's doing well because I know that can that can be a real challenge for a family. And and I hear, you know, mothers in particular talk about sometimes feeling that in their own grief they didn't know how to be fully present for those other children or that other child. And I'm sure that in some ways that's kind of what you were describing when you said all you were able to see is is anger and and um and whatnot. So that was an issue that I did not have. Having only one child, I mean, I it was in many ways um, I would say easier because it was my husband and I, and we were in the same space, uh, so to speak, although we were grieving differently in terms of the rituals. Uh, but I'm wondering what what what are some of the things that you might have noticed as you were moving through the early stages about how people responded to the grief? Um, because we know that you and I both, I think I talked about there's no word for it in the in the English language. You talk about how, you know, you recognize that society doesn't quite know what to do with the loss of a child. What were some of the things that either worked for you that people said or did or didn't work for you? Because we all know I think people are doing the best they can. They're well-intentioned, but they just always don't know what to say to us because it's so different. Um, you know, I had a friend here this weekend that just lost his wife a few months ago. And, you know, he's still in it, and we had some beautiful conversations, and he's alone now. So that has its own set of identity issues of, you know, I've been with this woman for 35 or 40 years now and by myself. Um, but I feel, and I'd love to hear your take on this, that when whenever it comes up for me and I say I've lost, you know, my son, people just almost freeze. They don't know what to say.

SPEAKER_02 27:46

Yeah. Well, I'm gonna come back to something that you said just a moment ago. Um, I'll use different words, but I think from the get-go, I really try to give people as much grace as possible because I think back to before I lost Katie. And 100% I was that person, not knowing what to say, pulling back because I didn't want to say the wrong thing or call them when they were resting, or right nothing. That was me. So when people either don't say what you want them to say, or say something that you're like, that's really kind of hurtful. I try and extend grace. Um I don't think I've I've ever gotten angry. I know some people will say, well, they didn't bring up my kid's name at Thanksgiving, or they said this thing, you know, about moving on, or I don't think that anger serves us at all. I mean, now that I'm further into my grief journey and and more calm and you know, all of that, sometimes I will, you know, use these moments as a teaching opportunity. Um, you know, and even just you know, most brave parents prefer the terms moving forward on our own timelines rather than moving on, or even though my child did die by suicide, I do know a number of people who have had that you know their children die in that matter. And I I I will sometimes when people will say committed suicide, for example, even that makes me go, oh, yeah. People generally are are somewhat offended and hurt by that term. And most people prefer the terms died by suicide because blah blah blah blah blah. And people go, Oh, thank you, thank you so much for sharing that with me. So my approach to it is different. Um, I've also tried to let things just roll on, you know, and there's I don't have the bandwidth and the energy that I did before Katie died. And if you know, if it's kind of repeat, repeat, repeat, repeat, I just have had to let relationships go. Bust them, yeah, let them go. But I really try not to get caught up in in the hurtful things that people say, because that can just be like a disease.

SPEAKER_00 30:10

It can just Yeah, and the the anger thing, I mean, I think you know, some parents will find themselves angry depending on the circumstances. And again, that may be part of the process. I didn't I didn't have it either because my circumstances were so different. I didn't even have it when Michael was born and I was told, you know, that he had this wet rare metabolic disorder for some reason. I don't know why I didn't have it. I'm grateful that I didn't. Um, I think I was just too busy trying to do the next thing, uh, that I didn't have time to be angry. But I think it's also maybe a personality issue. But like you, um, I think the worst thing that was ever said to me, and it was by a relative, there was a comment made, and really the the nuance was around the disability. Uh, well, now you can get on with your life. As though, you know, we'd had this horrible life with this disabled child. And I wanted to say in that moment, he you don't get it. He like he he he is my life. Um, but there was no point. So, like you, I I know people mean well, they're doing the best that they can, and and I just kind of I kind of move on. But um the relationship issue, let's talk about that a little bit, because I too found myself in situations with people who had been in our life for a long time, and um, you know, there was maybe a lot of drama in this this person's life or you know, whatever. And and certainly I had my own drama with it with a medically fragile child, but the bandwidth, as you alluded to, I did talk about this in a recent show as well. And and giving yourself permission to know, you know, who at this point in my journey, I can't deal with whatever's going on here. I can't deal with this, and and being okay with that, because that may be just what you need right now. It doesn't mean the relationship has to be severed forever. Although I will say that we did move away from several relationships uh just because it wasn't what we needed anymore. We didn't have the bandwidth. Can you speak a little bit about what that might have been like for you?

SPEAKER_02 32:16

Well, there aren't a lot, but I'll I'll maybe uh just come back to one in particular that's coming to mind. There were some parents of Katie's friend that were saying and doing things that were ridiculous. Let's just say ridiculous. For example, uh, they would get upset if I had other friends over at the house. Now keep in mind these other friends were were kids that were calling me, texting me, hey, can we come over and visit with you? Can we come over and spend time in Katie's room? You know, I have something I'd like to share with you, whatever it is, kids coming to us. And then these other parents were saying, Well, our kids were Katie's best friends, and you're posting all these stories about these other kids. It was like teenage drama.

SPEAKER_00 33:19

Yeah.

SPEAKER_02 33:20

And I thought, no, I do not have time for this.

SPEAKER_00 33:26

Yeah. Um, I had that even when Michael was in the hospital, where it was just, you know, he was so critical and people were coming. And then it started to become more about them. You know, like I'm here to tell you about my golf game, you know, with my husband. We had one guy that was just coming talking about him. And I was half out of my mind in the hospital, just trying to keep him comfortable and safe and all these decisions. And I remember at one point just saying to my husband, I can't, I can't do this. We just we cannot have visitors anymore, like other than just the most immediate people. And when we, you know, when we say it's okay, because it was it was too much, you know, I just couldn't deal with it. So I I think there's there's something to be said there about having awareness of your own body, your own spirit, your own mind, paying attention to where those boundaries, even, you know, if it's before, if you're in an illness type situation as I was, but even after, um, knowing that, you know, I need to set some of those boundaries for my own mental health and and and being okay with that. So let's transition, Lisa, because you're doing some amazing work. Uh, you now support other bereaved mothers and you you write, you speak, you have your podcasts, all of these things, and all this will be in the show notes for listeners. Very meaningful form of work. Um, but it also asks a lot of you personally. So I'm wondering how do you balance that? Because I know I know from you know my work in working with families who have children with disabilities. I did a lot of advocacy work before I got into my corporate, you know, business and all of that when Michael was much younger. And then when Michael passed, I was asked by my church if I would come and do seminars for some of these parents. And I very quickly saw that it was too much. Actually, I didn't see it. My husband did. That I was coming from these seminars that I was very excited to offer them. And it was all rated related to their journey in the disability world, which I was no longer in, which was another thing that was odd, uh, trying to figure out my identity and where do I fit here. But I would come home from those seminars exhausted, and I'd go to bed. And then my husband was the one that called attention to the fact that I normally don't come from any trainings or seminars tired. I normally come from them energized and, you know, kind of hyped up, if you will. And I realized it was too much for me. It was almost like a PTSD thing going back into it. So now here you are, and you're doing all this work and you're working with families, and I'm sure you hear from them, uh, and they they comment or respond, or you're working with them one-on-one. Say a little bit about what that is like in terms of your offering and the services that you provide, but then also how you manage that within your own spirit. Absolutely.

SPEAKER_02 36:25

Well, first thing, I find supporting other people to be helpful for my own grace. It it somehow fills me up. But having said that, I do have boundaries. I do have to protect my heart. And I I'm self-aware, like I say, I'm into this 10 and a half years. So you start to learn patterns, you know, May, June time period, for example, from Mother's Day all the way through to the end of June is a really tough season for me. You know, so I know that I have to limit the amount of things that I book in there, that I limit perhaps the number of sessions that I'll book with bereaved parents. And same thing in December, the month that Katie passed away. But I I definitely cannot say loudly or clearly enough how important self-care is. You know, I think as women in particular, we back off from that. Get busy, I'll do my walk, you know, in next month when I have more time. I'll take time for my friends in the summer when I have more time. And we put those needs last. What I've learned is that those things are actually fuel and they they keep us going. And that is priority number one for me. Sleep, I protect that fiercely. I will not stay out past nine o'clock. I will not book things in the evenings anymore, you know, with clients. Um, I walk, I I work out, I eat well, like it like it's healing. And I treat these things with utmost respect and respect to myself. Um I have to say that because my grief has changed over ten and a half years, as it probably normally does, I feel like I'm in a better space to provide support for other people. Because I think when you're too new in grief, supporting someone who is now in new grief can really be traumatizing. Yeah, I agree. I agree. I I think you have to be in the right place in order to be effective at supporting other people. I don't know if that answered.

SPEAKER_00 38:52

Yeah, no, it does. And I and I totally agree with you because I remember when Michael first died, um, we this we do an annual golf tournament now for persons with disabilities, but that was actually in the works. And the first tournament was scheduled for the week after he died. Obviously, we didn't know he was gonna pass. And so the tournament went on. Um my husband and I were, I don't even remember it. We were in such a fog. Um, and then shortly after that, my husband's co-chair suggested that we start a foundation and and raise money in Michael's name. And I just remember thinking, I'm barely breathing. Like I can't, you know, and I am an activist, I'm one that, you know, can start up anything probably at any moment. But I I remember it how overwhelmed I felt when he said that. And so we were like, there's no way. Well, we we did the tournament the next year, and we kept doing it. I think it was actually in the fifth year that we did, you know, formulate the foundation and more formally raise money for persons with disabilities. But um, in the early stages, absolutely no, no way. And I know what you mean in terms of feeling um I know it's not true for everyone, but I think for me, it was a natural place to go. Probably you as well, having been in the healthcare profession, was a natural place for me to go uh to want to do something in memory of my son that would serve other people. But I always want to be careful about that because I know that it's not true for every parent. I know that you know, some parents, you know, that they don't they don't have that inclination. They may not have the resources or the know-how. There's so many ways that people move forward, whatever that looks like. And I'm curious that what have what have other parents taught you in your own journey as you're working with them uh about the many ways to handle grief and those transitions, you know, in the in the long after?

SPEAKER_02 40:54

I think, as he said, everybody does their grief journey different. And it's important to honor that. But what I have seen, what I've experienced is that those people who tend to find, I'm gonna call it purpose, meaning. I don't know if there's other words to describe it. I mean, you and I are doing very publicly focused things. Like we're we're we're doing things, but other people can choose to do things that are quieter, scenes more. You know, it might be raising money, for example. It might be putting a park bench in their their child's favorite park, it might be donating to the school where they went to, or or or anything. But when people can find a purpose or some way to help other people, I know one lady paints rocks with with inspirational messages, then she'll just put in in tiny letters on the back her son's name, and she'll just put them wherever she takes them traveling with her and she leaves them, you know, in a special spot. Oh, that's wonderful.

SPEAKER_00 42:11

There's a and then and then people find them, right? That's beautiful. Yeah.

SPEAKER_02 42:16

Yes. So there are just countless things that we can do that are even quiet, that we don't other people don't even have to know that we're doing, but it's something that gives us a sense of purpose and lets our child's memory live on.

SPEAKER_00 42:31

Well, when you talk about purpose and meaning, let me add, because uh listeners probably know that my my work is in um it's grounded in adult human development. And I'm often talking about the stages of human development, of which there are 12 that we know of based on research today. And how we advance, if we do advance at all, into those what we call later stages is based on how we make meaning of the circumstances in our lives. You know, I've often been heard to say that life is nothing more than circumstances. You know, some are good, some are bad. We don't always have a choice about the circumstances that hit us, but we we do have a choice about how we think about them, as you have evidenced today. So the meaning making, I want the audience to get this, the listeners to get this, the meaning making is how we actually grow and develop into higher levels of thinking, if you will. And and I use higher cautiously because we never want to um pretend that one stage is better than the other. It's just different perspectives, perhaps broader perspectives as you move into the later stages, as opposed to uh staying in the earlier stages, which by the way, the majority of the workforce in uh in America is maybe stage four or five, possibly six. And again, one's not better than the other. We're not talking about intelligence here, we're talking about a whole lot of things that affect you. Human consciousness, or it's more complex than we have time to go into today. But so the meaning making is important. And I think that's probably what you alluded to with your therapist, is she helped you uh see things from a different perspective. And now you've written this amazing book. And I never read books before uh an interview because I want to ask the kind of questions that I think a non-reader would ask. Uh, and the first question I guess I would want uh to know is uh what did you hope to offer parents in general when you wrote the book? Right.

SPEAKER_02 44:36

So my first book is Journey to Healing. And now I will say that I think that books and resources have come a long way in 10 and a half years. And I'm so happy to see that there are better and more resources. But at the time when I lost Katie, the books that I found were basically just, you know, general grief. Right. And anything that I found around parent and or child grief was all your life is over. Oh, and by the way, your marriage is probably over too. And any children I have are probably gonna have mental health issues or become drug addicts.

SPEAKER_01 45:18

Yeah. Even my friends, I have friends, good meaning friends, neighbors, you know, who told me you know your marriage is probably gonna end, right?

SPEAKER_02 45:27

Yeah, you know, all this that kind of stuff was coming at me. And I I remember saying to my husband, I really feel like I need to write a book. And he said, why? And I said, because you know, the information that's out there right now, like I needed hope, plain and simple.

SPEAKER_01 45:47

I needed somebody to say, Lisa, I've been through this, it sucks.

SPEAKER_02 45:52

You're gonna be okay. Yeah, you're gonna be okay. And and I said, I need to write this book so that even if one person picks it up and gets a little bit of hope, I need to do this. So that was my mission. So it's not a book about my sad story. I mean, there's bits of Katie and her story woven through it, but I wanted to offer parents small tangible actions that they can take to help themselves. You know, and there's a full gamut of things from mindsets to, you know, the simplest self-care things that we can do to littering our children, getting the assistance that we need, whether it's through therapy or you know, self-help groups or you know, gratitude, nurturing our soul, all of these kinds of things. I just wanted some tangible tools to offer people, especially in early grade.

SPEAKER_00 46:55

Yeah, it's so it's so important because again, every parent is so different. And uh it's it's interesting you bring up the divorce because we there was a lot of myths around that. When you have a child with a disability, they just think you won't make it. And I don't know the statistics on either. I'm I'm I don't know that anybody really does. I know there was research done years ago that it's not necessarily true that parents who have a child with a disability split up, although I know some who have. And and you know, again, we're all such unique human beings, and it depends on the relationship, I think, before uh the event, whatever it is, uh, and after. But one of the things that my husband and I always kind of joke about is um we couldn't imagine ourselves with another person who had not gone through this with us. Like, I don't feel that another man would truly know who I am without having known Michael and and the journey that that I went through with Michael. And my husband feels the same way. So I don't know. It would be an interesting research project, wouldn't it, to find out what the numbers are around that and what keeps us together, you know, after such a loss. One of the things that I talk about a lot from a developmental perspective is that it's important to understand, and I'd love your thought on this, that there's a good chance as husband and wife or whatever your arrangement is, we're gonna grieve differently. So my husband, who is a very concrete thinker, um, he was going to the cemetery and still does quite a bit um when we're in when Florida, when we're in Florida, but he was going like two to three times uh a week. He he my my son's grave is the most manicured you can imagine. And when I go, which is not often because I don't feel that need, um, I always know he's been there because there isn't a weed or you know, the grave is the gravesite's polished and the whole thing. Um, and I remember, and I've said this often, you know, one day him saying to me, Why are you doing better than me? And I said, I'm not, I'm not doing better than you, I'm just doing it differently. Because for me, given the nature of my work and what I do with clients, I was journaling. I in the early days I wrote letters to my son and cried my eyes out, you know. But I was in my office, or I would be in nature, I would do things um based on what I needed, and I didn't feel the need to be at the cemetery all the time. So uh it it there's just different ways that we grieve. Did you find that in your own marriage? Oh, yes.

SPEAKER_02 49:34

I I don't know if you saw me nodding and smiling away when you said your husband was a very concrete thinker. I always say, My husband thinks in spreadsheets, yeah. Yeah, you know, he's uh a pharmacist by trade, he's um he bless his heart, but he is very, very concrete, like you say. Yeah, um, and I guess our situations were somewhat different too, in the fact that so Katie died beginning of December. We kind of made her son go back to school the last week before Christmas break. And the reason we did that is because we said, you know, if you don't go back now, it's gonna be really hard when you go back in the new year. Because then like five or six, whatever weeks would have passed. Go back, try a class, half a day, whatever, we'll come and get you. Anyway, so my husband said, Well, if we're making him go back to school, one of us should probably go back to work. So my husband would go from nine to three, drop Ryan off in high school, go in how he did his job, remembering drug names that are, you know, 27 letters long and working with the doctors and all that kind of thing is a mystery to me, but that's the way his brain works. But then he would come home absolutely depleted. And me, on the other hand, I would have my own therapy session in the morning. Your listeners will think I'm crazy, but I would have coffee with Katie. We brought her urn home. I would sit down with my coffee in the morning. As soon as those guys back out of the driveway, and I would talk to her, I would cry, I would, you know, pray to God, I would pour out whatever I needed to pour out. You know, sometimes it was five minutes, sometimes it was an hour and a half. I would always get outside, walk, no matter what the temperature, no matter what the weather. I early on I met uh bereaved mom support group. There were a couple ladies in there that I immediately was attracted to and spent a lot of time together with. So I worked on my grief in a very outward fashion. My husband worked on his grief in a very inward fashion. He would come home from work, I would be, you know, blah, blah, blah, blah, blah, blah, blah. This is what I did. And, you know, Sally and and and Jill and Rhonda and I, we did this and blah blah blah blah blah blah blah. And, you know, I want to do a scholarship in Katie'd memory, and blah, blah, blah, blah. And he would literally give me the hand.

SPEAKER_00 52:14

Yeah, like I can't, I can't deal with all that.

SPEAKER_02 52:17

Didn't have the capacity.

SPEAKER_00 52:19

Right.

SPEAKER_02 52:21

And I remember a many times, like, I think if you would have asked me about that six-month mark, was our marriage going to be okay? I would have said, No, no, it's not. It is not going to make it. But it's like we grew up hurt, but then we grew back together closer than ever. And I I think a couple of things. We said to each other, not often, but we said to each other, I love you. And I'm sorry I can't be a better support for you right now. I'm having a hard time standing on my own two feet. And at that point in time, I really felt like my son needed my energy more than my husband. And and that right or wrong, that's just where my brain went. And I kind of felt like if my marriage is all of that and a bank of chips, it will be on the back burner simmering. And it will be there when I when we're ready to get back to it. But my son needs me right now. And we never blamed each other, we never criticized each other. We were always a united force when it came to our son. And we just did the best we could while really respecting one another's grief journey. And now I'll get back to the statistic that you were mentioning. When I was writing my book, Journey to Healing, I actually dug into that. I thought, what is the truth behind this? And and like you, I'm science-based. I'm you know, give me, give me the research. That's just who I am, that's how I'm wired. And I found that actually 72% of marriages do survive the loss of a child. Now I can't speak specifically to the loss of a medically challenged child, but marriage in general, 72% do survive. But there were two caveats. One, you touched on this. How was the marriage before the loss? And the second thing was as a you know, and again, circumstances are different, but if you have blaming or shaming or you know, that kind of lack of respect, that's not going to help. And that's probably going to, you know, augment a marriage that that's failing. But providing there was no cheating, there was no addictions, there was, you know, no abuse and that kind of thing, if marriages were okay before, they're probably gonna be okay again.

unknown 55:03

Yeah.

SPEAKER_02 55:03

And no no marriage is perfect, right?

SPEAKER_00 55:05

Right. I think you know, our roughest time was while he was critically ill because we had different ideas about what needed to be addressed when. But where we were in total disagreement, where he was taking the caregiver side and thinking they knew better than I did. And I remember having some rough moments around that. Um, but then once Michael passed, I I don't know, maybe we were just both so numb. Um, and we loved to travel, but we pretty much only traveled in the United States uh because of Michael's uh, you know, being wheelchair bound. So, you know, we started making up for lost time. It gave us something to look forward to, and we were blessed to have the resources and and the ability to to do that travel. And it's something we still do. Uh, it gives us time to be, you know, like connected. And like you said, when you when you guys went on that trip, the three of you, it's just us. There's no work, there's there's, you know, but yet we still feel Mike is with us, like everywhere we go. Um, but I know in the early years I I didn't want to go anywhere that we had been with him. I I was terrified to go in, and we had done a lot, we had traveled all around the United States, so I didn't want to, it was hard to find places that we hadn't been as a family. I'm wondering what rituals you might still have, or if you do have in place uh around because for us, we have we take the day off of work on his birthday and the day he passed. I just feel really weird, like I just can't work as normal. We try to go uh as one ritual is we try to go somewhere that he either really loved or we know he would love, uh, something different, maybe it's in nature or whatever. Do you have any specific rituals that you lean into either on anniversary dates or just in general to feel more connected to her?

SPEAKER_02 57:28

Absolutely. And I think uh you and I are very similar in that way, but uh I too will not work on Katie's birthday. I will not work on her angel anniversary. We do something different every year, but I like to do some kind of act of kindness on those two days. Just uh this year, for example, her birthday was May 26th, and this the elementary school is just two blocks from us. And they have um they have a literary award in Katie's memory, and they they they talk about Katie with with the kids in the school, which I think is remarkable. Um but they have a month every year where they do acts of kindness for the community. So these kids from kindergarten to grade eight are that's just ingrained in them, acts of kindness. And I thought, what a better thing to do than to take cookies to the teachers and and all the staff at that school, just with a note about what an impact they made in Katie's life and our life, right? Because that's always been part of both of our kids' acts of kindness and and doing things for other people. So we we took, I don't know, I took a hundred and I don't know how many cookies just for the stab. Oh wow on her birthday. Um I had a tattoo done years ago on my wrist, and it was a four-hour tattoo. And the the artist, just in passing, you know, just said he was going back to school, he was working on a social work degree, and I just really felt a connection with this man. He had just lost his wife, she'd actually been through my cancer clinic, I had treated her, you know, like there was just this connection, and we were both talking about grief and loss, and and I just knew that he was who I wanted to extend a random act of kindness to. So I gave him um a $200 gift card to the university bookstore, and of course he started to cry, and he said, That's exactly what my books are going to cost me this year, and I didn't know how to do that. Oh wow, yeah, you know, so just little things like this, and I just let Katie or the universe or whatever you bring bring those things to me. But we love to travel. I was shortly after Katie passed away. I'm not on Pinterest, but somehow, somehow, I discovered Katie's Pinterest account. It was filled with travel destinations. And we had just been to Italy, my husband and I, and I found this account and it was like, oh my god, these look just like the photos I took in Italy. It was like Katie's Pinterest account and all the places she wanted to travel. And that just kind of lit something in me. It's like I can I can work through Katie's bucket list. Yeah, we always take a teeny tiny amount of ashes with her, with of her with us.

SPEAKER_03 1:00:37

Okay, wherever you go, wherever we go.

SPEAKER_02 1:00:39

So she is swimming in all kinds of oceans. She is by the pool in Arizona where she declared that she wanted to retire. And uh yeah, that's what we like to do.

SPEAKER_00 1:00:51

Yeah, there's it's so beautiful. And when you say that, I I this was before Michael passed, but I I had a really very profound spiritual experience where I felt I had to go to Israel out of nowhere this came because I that was never on my bucket list. And um, my son had very long, beautiful black curly hair, and I took a lock of his hair and I put it in the Sea of Galilee, you know. So there's crazy things that, you know, I mean, they sound crazy, I think, sometimes that we don't want to necessarily share with the with others, but um they're they're meaningful things, and I think anybody that's had a loss can relate to doing similar kinds of things. I mean, you just do what you do to remember and honor them. So Lisa, I just thank you so much for your time today and for the work that you're doing. Tell us, and again, it'll be in the show notes, but I always like it in on the air, where people can reach out to learn more about you and your work or if they're interested uh in having you speak, you know, anything along that line. What is the easiest way? I know you're all over social media, but the easiest way to reach out to you?

SPEAKER_02 1:02:02

One stop shop is my website. You will find everything there, whether it's my books or speaking or resources, lots of free resources. So you can go there.

SPEAKER_00 1:02:13

All right. One last thought or comment that you might offer any parent out there listening, wherever they are in their journey.

SPEAKER_02 1:02:23

You know, it all sounds so cliche, but it really is one step at a time. One day at a time, one breath at a time, and reaching out for help. I one of the greatest things that helped me was meeting other people that were further into their journey than I was and learning from them. I think that was my greatest gift.

SPEAKER_00 1:02:50

Well, thank you so much because I think you're a great gift to the ones out there who still are beginning that early journey and even into it. I've been so enjoyed meeting you. Appreciate your time. Thank you so much. So, listeners, again, this is Dr. Sharon Spano on Beyond the Loss with Lisa Beam. And I thank you so much for listening. And if you feel this conversation has been meaningful to you, or if you know anyone that's out there, I hope you'll share it because that is both Lisa, Lisa's goal and my own is to do what we can to help other parents and other family members on this journey. Until next time, please take gentle care. God bless. There's no timeline for understanding and no right way to carry what remains. Beyond the loss exists to honor parents who've lost a son or daughter and all the complexity that this implies, and to support the professionals who walk alongside them without comparison, judgment, or explanation. Wherever you are in the long after, you're not required to arrive anywhere else. Until next time, take gentle care.