Jessica: Hey there. Welcome back to the Going Scared podcast. This is your host Jessica Honegger, founder of the social impact fashion brand Noonday Collection. Alright, well, we are nearing the end of our series on resilience. Next week is actually our last one. Today’s conversation I added really last minute because I just met our guest a couple weeks ago via a phone call. And I had been thinking about how we have had these incredible conversations during the series, but one of the conversations that I hadn’t yet had is with a mom who has lost children at a young age. That to me is one of the hardest, heart-wrenching experiences that a woman could through. And I have often wondered what could cause a woman, what could enable someone, in order to rise strong and be resilient and the situation like that. So, as I had been mulling over and thinking about who I can interview, I actually met today’s guest, Stefanie Boyce.
Stefanie is a national speaker, teacher, writer, and guide, and in her honest real-life approach that people have come to love, audiences find encouragement, inspiration, and renewed hope. From my perspective birth out of her own journey of pain and loss, she encourages others to find beauty in difficult circumstances. Stefanie is forever a mother to 3. Ellie, currently a sweet seven-year-old plus Jaden and Brooklyn, both home in Heaven because of a genetic disorder that they were diagnosed with at a very young age. Stefanie currently lives outside of San Diego, California and works at The Oaks, a new retreat center purchased by Bob Goff and Miles Adcox designed to help people create, rest, and celebrate. And you will just even hear from Stefanie’s voice today that she truly is the right person to be leading a retreat center because she walked through a decade of grief, of caring for two kids with special needs, and then walking through their dads, and now over the last couple of years, healing, walking through that journey, and now leading others through a healing journey.
And that is really is what she does for me today as you’ll hear. For those of you guys that follow me on Instagram, y’all know that my dad was diagnosed with kidney and prostate cancer around a year-and-a-half ago, and he received immunotherapy about 18 months ago and had an adverse reaction to that and almost died of very, very rare adverse reaction. And that immunotherapy, though, has been doing the job and keeping the kidney cancer at bay. It hasn’t been growing. My dad’s care is now at MD Anderson, and just this week, we found out that the cancer is growing and has metastasized, and he is now on chemo. So, it was very timely for me to get to talk with Stefanie about grief. Grief is one of those journeys that I am afraid to go on. I haven’t lost too many people that are extremely, extremely close to me. And I want to learn. I want to learn from others who have walked that path before us. And you are going to learn so much from Stefanie today, I’m so grateful that she was is brave enough to want to share her story with us. So, welcome Stefanie to the Going Scared podcast.
Stefanie Boyce: National Speaker, Teacher, Writer, and Guide
Jessica: Well, thank you so much for sharing your story and not hoarding it. And I know it’s very brave to share your story. So, for those of you guys listening in, I met Stefanie on a phone call two weeks ago. We are chatting about a potential entrepreneurial retreat at the new place where she’s working, which you’ll hear about. And I started to get to know her story, and her story has really a mother’s worst fear in that she lost her children, and very recently. And I, during this series we’ve done on resilience, in the back of my mind I thought, gosh, talking to a mom who has been able to walk through grief after losing children, that is the most heart-wrenching grief I could possibly imagine. And I thought, I would love to interview a mom who has walked through that. And I think it was the next day I met Stefanie. So, I thought, this is meant to be, our conversation today. So, I really appreciate it.
Stefanie: Thank you so much. It’s always an honor to share about my kids and share all of the beauty and the pain. So, I’m just honored to be in this space with you and that our time will just encourage people that are going through rough times, whatever that looks like. I think when people originally hear my story, it’s a big story. It really is, like you said, a lot of mothers’ worst nightmares. And so, in our time, I just hope that people will feel comfortable to lean in and hopefully be encouraged and inspired.
“And so, in our time, I just hope that people will feel comfortable to lean in and hopefully be encouraged and inspired.”
Jessica: Well first tell us about how I met you.
Stefanie: Yeah, well I’m super excited. So, I ended up, I’m friends with Bob Goff, who I’m sure many of your listeners know and you know. He’s amazing. And we’ve been friends for a while now. He came to speak at my church when I was on staff at a church, we brought him in and had the chance to go to Uganda with him, which was amazing. And just over the years, we’ve stayed friends. And so, he went in with Miles Adcox down at Onsite, and they purchased this beautiful 160-acre retreat center out in the foothills of San Diego. So, when I heard about it, I was super excited for him. I’m like, "So Bob, tell me all about it." And he did. And I’m like, "Who’s running it?" He’s like, "You are." I’m like, "Bob, no, I live in Chicago and have this life. I don’t know if I can do that."
But that’s actually how I ended up going to Uganda too. It’s just Bob being like, "Let’s go to Uganda." So anyway, my husband and I just took this huge leap to come out here and hold space for people to create and rest and celebrate. And I got on the phone with you because I’m hoping that we can do that for some entrepreneurs, women in business. And that’s how we connected. So, I’m just excited to see what’s in store for this place and honored to be a part of it.
Jessica: So crazy. I can imagine back when you were maybe in high school and you’re like, "I’m gonna run a retreat center someday."
Stefanie: I don’t know about high school, I knew a single thing what I would be doing. It’s funny. You go to college with all these dreams of like, "I’m gonna be a psychologist." And then I end up so not doing that.
Jessica: So, tell us a little bit about your path, because I am curious. What was your life like prior to getting married and starting a family? What was your plan?
Stefanie: Yeah, isn’t it funny? Our stories usually don’t start on our worst day of our life. But we tend to be known for those worst days of our lives. I’m an only child, and I grew up in Rockford, Illinois. Was born with great parents. They got divorced when I was four and I have a stepdad. And went to a private Lutheran school and then went onto Eastern Illinois to get my degree in psychology. And that’s where I met my husband. And got married, moved to Beach Park, Illinois. Fun story. Once our kids were diagnosed… Our friends and family, they’re lovely. And they didn’t know what to do because there was no treatment or cure for the kids. And so, they decided to build a handicap accessible home for us right on a family road, because my last name is Boyce. And so, I lived Boyce Lane next to my mother-in-law and aunt-in-law and my husband worked for the family business. And so that’s where we were planted for most of our years.
So yeah. I’ve been kind of in Beach Park, really, for the majority of just being an adult. And then ended up at almost 40 now taking this huge leap in moving halfway across the United States to California. So yeah, that’s kind of my short beginnings.
Jessica: And so, you get married and you have your first couple of children. Tell us about Jayden and Brooklyn.
Stefanie: Yeah. So, we did what everybody typically would do. You get married, and then the next question is, "When are you having a kid?" And so, we were actually building a house at the time, and I got pregnant with Jayden and it was a rough pregnancy. So, I was in labor at 24 weeks and 26 weeks. And then landed on bed rest for the remainder of my pregnancy. So, I was literally barefoot, pregnant, and living in a camper. Which I think, didn’t you live in a camper for a season?
Jessica: I did. I’m so glad I’m not in my camper right now. Every day, I’m like, thank God I am not living in a camper. But living in a camper while pregnant, not…
Stefanie: Right, next level.
Jessica: Not good.
Stefanie: We did not have indoor plumbing, because it was just sitting next to my in-law’s house, so I literally had to go inside to use the restroom. It was awful. But once I got on bed rest, they were like, "You can’t even do that. You have to go inside." So, I moved into my mother-in-law’s house for a season. Luckily, she’s lovely and that was a big deal.
Jessica: That’s good. Because that would be a nightmare.
A Defining Moment
Stefanie: Awful. And so yeah, and building a house too. So, they would pack me a lunch and then leave for the day and then come back and check on me. So, when Jayden was born, he was 38 weeks and we were just excited that he was breathing. He came out this enormously large cone head. Remember "Saturday Night Live," but it was on the top. And my husband was like, "Is that gonna go away?" But I was like…
Jessica: Please don’t tell me.
Stefanie: Right. I’m like, oh, my gosh. So, we put the hat on and covered him up. But his newborn pictures are hilarious. But we were just excited to be new parents. And we spent three years just loving on Jayden. And decided that if one is good, two is better. So, we got pregnant and had Brooklyn, my daughter. So, they were three years apart. And right around the time that she was born, Jayden was hitting his developmental milestones at three. But we noticed there were just some delays. And so, we went to the pediatrician and he said, "I don’t think that it’s a big deal. But based on some other medical stuff, why don’t you go down to the Children’s Hospital and meet with a geneticist?"
And so, I was like, "Okay." But he’s like, "There’s no rush." So, I didn’t panic. I made the appointment and I remember the day of my appointment, I had Brooklyn in her car seat. And Jayden, trying to wrangle them in a small medical office was torturous. And the doctor walked in, he took one look at Jayden, he walked out and then he came back in and he said, "Ma’am, I think that your son has mucopolysaccharidosis." And I was like, "Supercali… What?"
Jessica: Right, what is that?
Stefanie: Yeah, what is that? And give me the drugs, give me the medicine, tell me what to do. I don’t know what you just said. And that’s what began our journey. So, I left. He told me… it was back when we didn’t have smartphones. So, he told me when I got home, don’t Google it. And I’m like, yeah, okay. So, I get home, the first thing I do is Google it. And I see my son’s face on another child through Google Image. And I was like, “What the heck?” We had to wait for tests to confirm the type of MPS that he had. And meanwhile they said, "We’d also like to test your daughter." And I was just like, "You’ve gotta be kidding me."
And so, the tests results came back that, yes, in fact, my son did have this. It is terminal. There’s no treatment, no cure. We would watch him progress a little bit more, and then slowly over the years, regress. Because they’re missing an enzyme that breaks down a sugar the body naturally makes. And it stores in the central nervous system and brain. And so over time, it basically pollutes the brain and then shuts the brain down. So, we would have to watch Jayden lose language, lose the ability to walk and talk and feed himself. He wouldn’t be potty trained and have complications medically, and then eventually pass away.
And then three weeks after he was tested, the results came back that Brooklyn also had it. So, she was three months old. And I just remember being like, the white picket fence was just shattered in two phone calls. And everything I thought that my life would look like wasn’t gonna look like that anymore. And I remember when we got Brooklyn’s phone call, I had gone over to my mother-in-law’s house. At this time, we had finally moved out. And she was laying over my husband, he was weeping on the floor and she was weeping over him. And our family… I married into a "Leave it to Beaver" family. So just generations full of people that loved Jesus.
And we all had gathered, and everybody just had no words. And I remember seeing Jayden running around with a smile on his face, because he thought it was like a birthday party or something. I don’t know. He was three. And then my daughter, Brooklyn, was just kind of chilling in her car seat. And I just remember in that moment, going, you know what? I’m not gonna be defeated by this. I’m not gonna even just survive this. We’re gonna be better because of this. And that was a decision that I had to make every single day and still have to make. But I just remember it was that moment seeing Jayden and Brooklyn still vibrant, still alive, still breathing. And I was like, I’m gonna love so hard while I have them here. And we’re gonna make the most of this.
“I’m not gonna be defeated by this. I’m not gonna even just survive this. We’re gonna be better because of this. And that was a decision that I had to make every single day and still have to make.” Stefanie Boyce
And that was a defining moment for me.
Jessica: Where did that come from? Because that is pretty profound. That is a choice, and the first guest that we had on our episode is an Auschwitz survivor, and she wrote a book called The Choice. And you too see throughout her story as she survived Auschwitz that there were these defining choices that she made. "I’m gonna choose to focus on what I have and what I don’t have, I’m gonna choose to forgive instead of harbor resentment." And she attributed a lot of that to her parents. But people can go through the exact same thing and have such different responses to it. And it’s our response that becomes what defines our future and our stories. And I think that is why, just this entire series on resilience and interviewing people that have been through and are going through still, just really traumatic hard times. And yet they make these choices.
And to have a mindset of hope and of, that I do have choice, that I do have agency. So, I’m curious, what do you think, in that moment, gave you that ability or that voice inside of you that said, "We’re gonna make the most of this. And this is gonna be for our flourishing"?
Led by Faith
Stefanie: Yeah, I think it’s twofold for us. Faith is really important. So, I would have to say that the lens that I use to see my life is through that. Just believing death isn’t the end has been super important.
But I think when we go through painful things and we look at something like my story, it’s really easy to see the obvious thing, which is suffering and pain. But what we forget is it’s wrapped in a three-year-old’s body, or it’s wrapped in a three-month-old body. Like, my children are beautiful. And so, it was easy to love them. And it was easy to choose them and choose to do my best as a mom. I mean I certainly didn’t succeed every day, and probably failed more than I did succeed. But I think just loving them. When you look at your child’s face, you’re not like, "Oh, well you’re not perfect. So, I’m gonna not love you." You just look at your child, and you’re like, "Oh my gosh, you’re mine. And I’m gonna do the best that I can to love you."
And so, I don’t know. And I’ll be honest. I’m certainly no saint. My husband dealt with it very differently. It took him a good year. He didn’t wanna be around the kids. He just could not grasp how he couldn’t protect us from this. And so, he went through a really deep depression. And the one thing that released him from that was he started praying for other people. He just got to this place where he was like, "You know what, Lord. You know my desires for healing and I’m gonna just trust that you’ll do what you need to do." And then he also simultaneously went to India and was serving in a leprosy colony and realized, "Wow, I’m not the only one on this world with pain." And I think it was just this moment for him where he realized that he had something really beautiful in front of him, and he could miss it with time being so limited.
That was the gift that we were given. Our diagnosis took us out of the Jones’ rat race. We couldn’t keep up anymore. We couldn’t compare ourselves to how our kids were doing, what grades they were getting. Or when did they potty train? It’s like we were just kicked out of that whole race. Which is kind of a blessing. And so, we did. We had to make choices. Little choices. Every day, to look past the blaring obvious difficulties that caregiving brings. Because I have to tell you, it’s super hard to have three children that need diapering and need to be fed and G-tubes. I mean we would like wrangle them like monkeys to try to feed them. And so, it was a lot and many days, I’d wanna give up. And I think for me, resiliency comes in these small, everyday mundane choices.
It wasn’t just that one moment that I decided that we were gonna be better. It was like every single moment that followed, choosing to see a different way. And to carve the path. To continue to go back to those basic things that I saw as being true and worthy of my time and my attention and my love.
“I think for me, resiliency comes in these small, everyday mundane choices. It wasn’t just that one moment that I decided that we were gonna be better. It was like every single moment that followed, choosing to see a different way.” Stefanie Boyce
Jessica: And so your children, three, a little baby, some developmental delays, but nothing like G-tubes and never being potty trained. When did you begin to see some of those milestones begin to deteriorate? And what was that initial grief process like for you?
Stefanie: Yeah. It was new normal after new normal. It’s funny. During the season that we’re in right now, where everyone is kind of shifting into these new normals or pivots, I’m like, man, that was my life for like a decade. As soon as I would get used to, "Okay, we can do this, it’s a G-tube, I’ve got this," things would change. And there’d be something that, now it’s seizures. So, each milestone that they would miss, which started happening around the age of four or five. Like, my daughter had hundreds of words, and within six months, lost them all. And it was painful. She was very upset about it, and rightfully so. But yeah, it was super painful to watch. And I think for us, adjusting to those new normals, was again having to making that decision each time to return back to who we wanna be. And then choose to see the beauty in the midst of the pain.
Jessica: I’ve heard you say… you said we wanna color code and categorize our emotions, when in reality, our emotions are muddled together. They snuggle up right next to each other. And certainly, a mother’s love, it snuggles her children but there is this reality of… I mean I could have chosen to be in a constant state of grief because you’re dealing… you just never know what you’re gonna lose. You’re gonna wake up that day and you don’t know, is my child gonna wake up now without the ability to talk? And now without the ability to walk? Tell us more about that, about how you can’t compartmentalize grief.
Stefanie: Yeah, I think we wanna do that. I mean I think it’s a protective measure that we wanna compartmentalize grief because it’s easier to ignore our pain or try to control our pain. And we’re complex beings and I think what we wanna do is go, "Well I’m either joyful or I’m sad." But really what happens is they kind of coexist at the same place. It’s kind of ground zero is where you’ll find both joy and pain, and they’re coming from the same exact place. And so, for me, it was more about integration. Like, how can I be happy and sad? How can I choose to be really honest about the things that are tough and broken in this world? Because I don’t wanna gloss over or sugarcoat my pain. It’s real and I’m not willing to say, "Yay, my kids have MPS and I’m really happy and I’m gonna celebrate that."
But I can celebrate them and their humanness. And so, for me, it was always trying to look at, okay, yes, that is difficult. And I can sit there and stare at the easy things, or I can choose a different way. I can choose to see something that takes both sides of the coin into consideration. It’s almost like just grafting in pain into your story and just letting it be what it is and acknowledging for what it is. So, for me, you know, I get it. I so get wanting to compartmentalize it and put it over to the side. But to me, it’s more about integrating it.
There’s this quote that I just read, and I was like, oh, my gosh, this is it. I feel like I’m a collector of really great people’s words. I don’t know if I always have the ones for myself, but when I read something, I’m like, oh, that’s so good. But it says, "Your power is not dependent on your ability to get over or transcend your trauma. Your power is rooted in your resilience. Your ability to lead a creative, soul-centered, and wildly joyful life while still recognizing and caring for the parts of you that have been wounded." It’s by Blooming Forward. Isn’t that great?
Jessica: That is.
Stefanie: It’s like let’s hold both of those truths together in one space and just acknowledge that both can be in the same place.
Jessica: Do you think that’s what enabled you to have the courage? I know you have a daughter who lives now. Tell us the story about deciding to have a third child.
From Type A to Plan B
Stefanie: Oh my gosh. Yeah, that was a journey. So, I just got to a point, my husband wanted to have a third child after the news. And I’m like, "Are you insane?" I like to say that I’m Type A in recovery. I’m Type A going to Plan B. Because that is just not how things work. I’m not like, "Yeah, let’s just trust God." It’s more like, oh my gosh. How can I figure this out and make something happen? And so, it took me a long time to surrender to this idea that I’m so not in control. And that whatever child is supposed to be in my home, is supposed to be in my home.
And so, when I got to that point, we decided to try to have a third child, naturally. And Ellie was conceived right away. And so, I had to wait 10 months to find out if she had MPS like her brother and sister. And I remember the moment we found out she didn’t, that she was actually on the other side of the spectrum. And in order to get there, I had to realize that I loved Jayden and Brooklyn and I would love a third child whether that child was born with special needs or not. And who am I to control? Right? Even if I did everything possible to try to manipulate that from happening, she might not have MPS but she could have something else. And so, I just had to get to a place where a human life is a human life worth loving.
And if the Good Lord wanted to add a third child to our family, I would love whatever child he gave me. And so yeah, I remember getting the news that she didn’t have Sanfilippo or MPS. I just remember feeling sad in new, fresh ways for Jayden and Brooklyn. Because there would be a constant reminder of typical and terminal living in one home. But then I would also celebrate the fact that I wouldn’t have to bury a third child. And so again, same place. It’s Ellie, it’s our daughter and she’s bringing us all this joy, and then all this pain and it’s wrapped into one little baby. And I think we so wanna compartmentalize that stuff, but it does, it’s both. It just exists together.
And I will say, back to what you said about us anticipating grief and waking up every morning. I spent about a decade waking up every morning wondering if my kids were gonna be breathing. And more realistically for Jayden and Brooklyn. But it also was a gift. It was this gift to remember how precious life is. It was a gift to prepare for what I was going to endure. Losing your children is as bad as you could imagine, and then worse. But those times of preparation that I was gifted to take pictures, and make memories, not everybody gets that. So again, I can focus on the fact that my kids have passed, or I can focus on the gift of life that I got. And I believe we move forward with the people that we love that have passed.
“Losing your children is as bad as you could imagine, and then worse. But those times of preparation that I was gifted to take pictures, and make memories, not everybody gets that.” Stefanie Boyce
So, I don’t think that we move away from them. I think we move with them and towards them. And again, that’s shaped by my faith. So, of course nobody wants to get over or move on from the people they love, right? Like, that’s why I think people stay in these places of sadness is because it almost feels wrong to smile again or be happy again. Because it’s like, “Well then does that mean I didn’t love them well if I’m not missing them enough?” And that might not make sense.
But for me, it’s like the reason I can laugh and the reason that I’m full of joy and the reason that I’m excited to be in the season I am to hold space for others, is like because I believe that my kids are alive. I believe they’re still with me. And so I think our faith is always pressed when we experience significant suffering or pain or anything in our lives that cause us to ask ourselves, “Will I survive this?” And so my faith had to become very real. And so I can look at those moments of anticipating the worst days of my life and be grateful. Be grateful that I knew it was coming.
And the thing is, Ellie could die too. I think sometimes we think we’re immune to the world being yucky. And the truth is the world is yucky. But it also has all this beauty. And so, to me, it’s like saying, yeah, there’s both here. And what are we gonna do with all that?
Jessica: It’s like, what are you gonna pay attention to more? So tell me about Boyce Lane. Because that sounds like one incredible story and it seems like community has played a huge part in you being able to be resilient.
Stefanie: Yeah, Boyce Lane is awesome. They’re sad that we’re gone now. But Boyce Lane was fun. My husband, again, came from this beautiful, lovely extended family. A big family where everybody loves each other and they sing around the piano. It’s like the open door where everybody’s coming in and out. And yeah, our house, just because it was built by the community and for the community, our community lived within the walls. And it really does take a village. I think it takes a small army when you have two children with special needs.
Jessica: So, they literally said… I’m just imagining you get these diagnosed… I’m trying to understand how this happened. So, you get these diagnoses. You have two kids with needs that are going to only grow over time. Some of the needs you probably couldn’t even truly predict or fathom. So, was it a big fundraiser that started? How did the army of help begin to organize and come to life in your situation?
Stefanie: Yeah, we had my husband’s cousin came over and she’s like, "We don’t know what to do but we wanna do something. Can we build you a house?" We were just shell shocked. We’re like… on the one hand, we’re like, "No." It’s a pride thing. We don’t want handouts. And then the other part is like, oh my gosh, please help us. I don’t know how we’re gonna do this. And so, they just organized. They held fundraisers. They did this really amazing thing where it was kind of like everybody pledged $1,000 and then they could raise it however they wanted.
So, they took a pledge to build with the Boyces. And then the pledges just started coming in. And my husband was part of the blue-collar life. And so, we just had a lot of people in the trades that loved us really well and donated a lot of their time. And our community literally hands in the ground built our house. Handicapped accessible. When I got the diagnosis, I struggled to sleep. And so, thinking of a house that would safe for my kids, was what helped me fall asleep. And so, I drew it on a piece of scrap paper and gave it to an architect and he made it come true.
And then Make A Wish came over and put a fence around our house, and we had respite workers in our house all the time that helped me care for the kids as their needs increased. I mean it was just amazing. It was like heaven on earth just having people love us so well. And there’s nothing I could do to ever repay those people back. But it’s funny, when you talk to them, they will say that they’ve already been paid back by getting to know my kids and being present. Because they had this uncanny ability to love without judgment.
I mean I remember just moments of healing that happened in my living room without words. They really were able to change lives significantly and it was exactly because they had MPS, you know? That their love was transformed and utilized through their weakness. And I hope that’s what’s true of all of us, is that we can be used, not just in the things that we’re strong at, but in the places that we’re vulnerable. And I hope that that’s what makes us accessible to people, right? Like, I hope people see that I’m not perfect or that I am broken, and that it’s my brokenness that lets whatever light is in me shine.
A Journey of Healing
Jessica: So, what was a bad for you. Because you sound very evolved and you have this beautiful, calming voice. And I just wanna sit at your feet and just learn from you. But I’m just imagining, though, I’m like I’m going crazy with my three children that do not have special needs. Because I am with all the time right now and I’m losing my mind just a little bit. And I’m like, okay. So, tell me about a bad day or a day when you were like… like what led you when you were totally overwhelmed, like, "I don’t think I can do this anymore."
Stefanie: Oh, yeah. And I have to say, that was almost every day. So, I’d have these really bright, maybe lovely perspectives and then I’d wake up. Just joking.
Jessica: Well you are living in paradise right now, 150 acres.
Stefanie: Yeah, I’m looking out a window at a beautiful oak tree right now.
Jessica: That brings a lot of Zen into one’s life.
Stefanie: Yeah, and see, I went got my… I’m a certified yoga instructor. And so…
Jessica: Oh, that fits the voice. It all is becoming clear to me now.
Stefanie: And I went and did some spiritual direction too. So maybe that’s what’s happened. I’m just so far removed.
Jessica: Oh, girl, you’re in the zone today. I love… I need some of that. I need some of that zone today.
Stefanie: There you go. See, come to The Oaks. No, actually all you have to do is talk to somebody close to me for a good bad day. But I’m happy to share many. I will tell you one in particular. Brooklyn was very, very feisty. She… oh, man. I would have to sit on her to braid her. She had this big lion’s mane of hair. And every morning, it was battle of the brush. I’d lose my crap just trying to get her dressed. And she’d kick her shoes off. Like when the bus came, I was like, hallelujah. Because they were so hard to get ready.
But I remember one day, Brooklyn, she had been itching her head for weeks. And because she was non-verbal, we thought something neurological is going on. So, I took her down to the city for an appointment. I took her to the dentist. I took her to the doctor. I was freaking out that something was wrong, she couldn’t tell me what it was. She’s biting on her cup. She’s kicking. Finally, our respite worker says, "I think she has lice." And I’m like, "Oh, no. No, she can’t have lice." She literally has this hair for days. And I remember hitting the wall, and like, weeping down and sliding down the wall. And my husband just looked at me like, "Oh, no. No, no, you can’t melt down. You’re the one…"
Jessica: You’re melting over lice which is like what all moms do when their kids have lice.
Stefanie: Of course. Have you had lice? It is the worth thing in the earth. I don’t know who created lice, but it is awful. And so, I just remember looking at my husband and being like, "I’m going to the store. I’m gonna get all the lice removal stuff there is and the biggest bottle of wine I can find, and I will be back." And I come back with this bottle of wine and this big old tub of lice removal. And I start picking out, for three hours, just lice out of my daughter’s hair. And she’s in a highchair. She’s crying. She doesn’t understand what’s going on. And it was one of the worst days of my life.
And I have so much other nasty stuff I’ve had to do where like I’ve been pooped on, I mean hospital stays, you name it, sleeping on where places. And there are many, many days.
Jessica: That was your life. I’m just imagining, yeah, that was your life for 12 years. And you’re managing respite care workers and oftentimes, there’s people in and out of those jobs a lot of times. And so I’m just imagining it, and now you live in this very quiet, beautiful place in California.
Stefanie: Yeah, but that’s why I needed a Zen place. Like, I needed a happy place to go.
Jessica: Right. So, I’m just like, how do you go from every day is just pouring out and getting through the day, to the last couple of years? I mean I’d love to hear, first of all, just the story of their death. Did you have warning signs? Was hospice involved or was it sudden?
Stefanie: So, what was really great about Illinois, and this isn’t the case for every state, but so hospice was something that we were able to get as soon as my son Jayden outgrew diapers. So, they were with us for four years. Yeah, so it was for our palliative services. So, we were able to really build relationships with the team that would be walking us through our journey. So, again, I know that’s unique. But in Illinois, it was such a gift. And having them around to walk us through every little milestone was super important. And yeah, I’m always cautious to talk about our experience with their passing. Only because I know it’s not everybody’s story. And I know that death is impacted. But I like to say it’s like a death narrative.
So, depending on how you’ve experienced death as a child, growing up, who you’ve lost or who you haven’t lost, everything shapes kind of how we interact with death. And a lot of us have not been given great handles on how to talk about death, how to lament, how to mourn. And so, anticipating that grief over a decade, although it sounds difficult, the reason it’s such a gift is because I was able to gently prepare for these moments as best as you can. Where other moms and other people, may have lost their kids suddenly or traumatically. And so, I’m very aware. I actually have spent some time volunteering in pediatric hospice. And I’m aware that I have a unique story. It’s not everybody’s story.
But for me, in order to feel some semblance of control in a very out of control time, it was best for me in my grief journey to face everything head on. So, I wanted to know the signs that I needed to look for. I wanted to be proactive in managing pain. I wanted to make sure that I knew what I was up against. For example, one of the things that we did when we knew that it was getting a little bit closer is I ordered urns, and I had two urns for the kids in the basement waiting. I should have ordered five, right? Because we all die. But for me, it was like, in that moment, I don’t want to pick out an urn that I don’t like. So, I wanna have the one I like, so when the time is ready, I don’t have to make that hasty decision.
And so, it was just like little things like that. And I learned how I wanted their passings to go and made conscious choices that were available to me based off of watching my other friends that had done it already before me. So that’s the beautiful part about being in these communities. Usually you’re not suffering alone. Usually it’s not just your story. And so, I had friends that have buried children, and I’ve gone to their funerals and I’ve been in those holy, sacred moments where the veil is so thin alongside of them. And they taught me how to do these days.
“That’s the beautiful part about being in these communities. Usually, you’re not suffering alone. Usually, it’s not just your story.” Stefanie Boyce
And I would pray. Oh, I would pray. Like, "Lord, I don’t know how I’m going to get through those days. I don’t know how I’m gonna navigate those days." And I didn’t have the strength to navigate them until I was in them. And I think we want the strength. Like, we wanna know that we’ll be able to get through those days before we’re standing in those days. But the truth is, it always comes the moment that you need it to come. And so, to me, their passings were holy and sacred and beautiful, and painful too, obviously.
But being able to be with your child on their first breath and their last… there’s just something holy that happens in those moments. Again, where it’s like Heaven and Earth just seems so thin, it’s palpable. You can almost feel something where time just stops, and you’re hovering in between these two places. And so again, my faith obviously shapes how I see this because I believe the moment that they took their last breath here, they no longer had MPS. They no longer were suffering and that they were home and that I’ll see them again. And so, I think with that perspective, it also shaped my continued journey of healing. Like I’m certainly through and over to another side. I hope I never, to a point, where I say I’m on the other side of healing. But yeah, both passings were very different but equally holy and sacred.
Finding Encouragement, Inspiration, and Renewed Hope
Jessica: I cannot compare losing a parent, especially an older parent, to losing a child. But I did. My dad has cancer and we just found out yesterday that it is growing, and it metastasized and I’m really close to my dad. And I hate the idea of grief. And I think that’s why doing this series, I thought, God, the one person I haven’t talked to is someone who has been through really the deep grief of losing someone beloved to them. And I’m struck obviously by the fact that I just found out and then here I am talking to you today, and my husband said yesterday, my husband is such a feeler and he was all sad. And I was like, I’m whatever. Who knows when this is gonna… I don’t want to face it. And I think I’m just so afraid. And yet, now it’s all coming together how much God loves me. Because today I happened to have a friend over who lost her mom, I don’t know, about six months ago, to a very tragic incident. And I remember when her mom was getting the surgery, seven months ago, we were like… she was like, "I couldn’t make it. I couldn’t make it without my mom. Like, there’s no way. This surgery has to end with a good outcome."
And then here today, she’s just like you are, processing joy and grief and pain and love. And that is just life. I mean it is life.
But I’m curious, if you do, and I think a lot of us do especially when it comes to older parents, not as much with terminally ill children, that is another level of grief and preparation. But you gave an instance of buying an urn. That’s so powerful. And I love that idea. Just having beautiful urns for everyone in your family just out on the… I don’t know, in your office or something.
Stefanie: I think that’s what farmers did back in the day, is with their… not necessarily urns. But they buried all their family members outside. They had a family grave site.
Jessica: The family plot, yeah. That’s so true. Actually, I do have one of those at my parents’ ranch. But yeah, and even last night, we were talking about it at dinner, and my son, Jack, I said, "Well the clock’s ticking now." And Jack goes, "Don’t we all have clocks that are ticking?" And I’m like, it’s so true. But man, the pain and the idea of grieving, it’s not something you want to run into. But certainly, it sounds as if you went about it very intentionally. So, I’m just curious, for anyone who might be listening today, I’m sure I’m not the only one who’s facing a death imminently or even in the next couple of years, how can we approach that in an intentional way?
Stefanie: I’m not an expert. I’ve walked it through it twice for myself. But everybody’s probably gonna need different things. And I think it’s just paying attention and listening. One of the things that I wrote a little bit on a blog back when blogs were cool, I wrote about Jayden’s passing and doing what feels right. And that’s the key you’ll always hear, is once you get to that point, and you’re making decisions, you will know in your soul, if you pay attention and lean in, you will know what it is right in that moment. And you just have to trust that. We’re all longing for Eden. It’s not wrong in our souls to want healing or to not want to face pain. We weren’t really designed to. We were designed to live in a world where there isn’t any.
“And that’s the key you’ll always hear, is once you get to that point, and you’re making decisions, you will know in your soul, if you pay attention and lean in, you will know what it is right in that moment. And you just have to trust that.” Stefanie Boyce
And so, when I think about facing pain, the best advice I have is the advice that I was given. My friend, Micah, was a football player. And it was a really cold and rainy day, and they didn’t wanna get out on the field and play football. And his coach leaned over to him and was like, "You guys gotta stick your face in it." And I don’t know why, that’s such a hard analogy for this topic, but it has stuck with me. I just wanna stick my face in it. I will not be controlled by fear, I’m going to run towards it and I’m gonna stick my face in it.
And it can’t hurt as bad if I’m looking at it straight on. Like, I’m gonna study it, I’m gonna learn it and then it won’t win. It can’t have control over me. And I was actually down at the beach recently, because they just opened the beaches here. And I was watching the surfers. And surfers do this thing, it’s called a duck dive. So, when the wave is coming at them, they actually start gaining speed and start paddling harder, and they aim straight perpendicular to the wave. And as soon as they get about six feet near the wave, they dive under the wave. They push down on the board to go even deeper, so the wave doesn’t take them, and it crashes over them, and then they can go out even further.
And so, for me, grief is the same way. I’m going straight towards that wave. I’m gonna go towards the pain, I’m gonna trust myself that I’m gonna know what feels right when I get there. I’m gonna dive down deep, and I’m gonna let that wave roll over me, and hopefully, it won’t destroy me. I’ll be able to just get tossed about a bit, and then spit back out. So, for anybody that’s going through painful circumstances and they feel like, "Oh, Lord, how can I do this? How will I get through this?" I would just say, start investigating your faith. Because there’s something just about having that eternal perspective that some God is carrying you and with you through your darkest… that while you’re being tossed about, and while you’re being scared, you have a place to go with that pain.
“I’m going straight towards that wave. I’m gonna go towards the pain, I’m gonna trust myself that I’m gonna know what feels right when I get there. I’m gonna dive down deep, and I’m gonna let that wave roll over me, and hopefully, it won’t destroy me.” Stefanie Boyce
I think we’ve just forgotten about lament. We’ve forgotten the art of lament. That we were made to cry out, we were made to mourn. And that’s the way through. That’s the way through. You can’t get around it. Your son was right, we all have clocks. So, we don’t like to talk about death because it’s painful and we weren’t made for it. But we all die. And so, may we all find the beauty in life by examining death and what we believe. Because it really does shape the way we live.
Jessica: I can’t get the image out of my mind having urns sitting in your house and, you know, I love how Jack said when I said, “Gosh, Dad has a ticking clock now, it’s so visible,” and Jack said, “Mom, we all have ticking clocks.” And it’s true, it’s so true, that we all will die. We all will lose people to death. And yet, it’s a topic that we have a hard time talking about. I think grief is a subject that we, especially in America, are not accustomed to being in our everyday language. I think it is right now; that’s been one of the benefits of COVID-19 is, I think we are all having more vulnerable conversations and are just more aware of how much life is truly just out of our control.
So, Stefanie truly was my teacher in today’s conversation, and I might go purchase urns for my family and put them in my office just to remind me that life is not in our control. And we can hold both death and life together. All this tension together.
Alright, next week — last episode. It’s a good one. It is a good one. It is about persevering through justice and being resilient and our fight to end… well you’re just going to hear all about it from Shannon. She basically ends a child war. It’s a profound story. So, I can’t wait for you to tune in to that.
Today’s episode was produced by Eddie Kaufholz. Our music from today’s show is by my friend Ellie Holcomb. And I’m Jessica Honegger. Until next week, let’s take each other by the hand and keep going scared.