The mind of 1000 Points of Light with the gold, Chris Jones, told his barriers and blockage, how he surpass and survive his grief with the passing of his child. He even created a Facebook page entitled Mitchell’s journey, which has since gained international attention as both a place for healing and insights on the often misunderstood world of grief and healing.
Episode Transcription;
(Intro plays)
Ari:Welcome to whispers and bricks. My name is Ari Schonbrun. And I’m your host. I have a guest on today by the name of Chris Jones. Chris was introduced to me by another guest that I’ve had in the show Callie Israel, and I’m so happy that she actually made this connection. Let me tell a little bit about Chris. Chris Jones lives in Salt Lake City, Utah, with his wife Natalie and three living children. Their son Mitchell passed away from heart failure in 2013. He had and forgive me if I’m not pronouncing this correctly do Shane muscular dystrophy, a catastrophic muscle wasting disease that is 100% fatal. Before son’s passing crit, Chris started a Facebook page and titled Mitchell’s journey, which has since gained international attention as both a place for healing and insights on the often misunderstood world of Grief and Healing. Chris’s writings have become a beacon of hope to many, and an invitation for his readers to live a life of significance. Most recently, he started his deepest life’s work called 1000 Points of Light, with the goal to help people identify the events in their lives that have shaped them into the person they’ve become. For Chris, everything is connected. And connection is everything. Please help me welcome Chris Jones. Chris, how are you?
Chris I’m doing great. Thanks for having me.
Ari: It’s my pleasure. I’m so happy that Carly introduced us. It was it was great. It was just I mean phenomenal. And I’m so happy that I’m so happy that you’re here.
Okay, I mean,obviously, I just read your bio. So my audience now knows that you did lose a child.
As you know, the name of this podcast is whispers and bricks, and the whispers of those voices telling us what is the right thing to do and represents the good life. The bricks are the bad things that we go through in life. And everybody at some point in time or another does go through some bad things in life, right, some worse than others. But life is not. You know, as we say, it’s not a straight line. It’s that there are many, many bumps in the roads. Now the reason I asked you to be on the show is because after I read your story, I knew that there were people in my audience who are going through the same things that you had gone through, they have been hit with brick after brick, much like what you had gone through. And they needed to hear and to know that they could get through the trials and tribulations, the same way that you did. They needed to know that their whispers were out there that could help save them. Now in your life, you have had a major brick thrown at you as we know. Now, let me just ask you a couple of questions before we get started, actually, how many kids did you have at the time? For four kids? You had four kids? And how old were they? At the time? Huh?
Chris: What my daughter must have been 14, something like that. Ethan would have been seven, maybe an MIT Wyatt would have beenfour, four years old five, maybe I’d have to go back and do the math. But they were they were quite young. I mean, this was eight years ago. So right and Mitchell was, he was 10 coming on 11 Okay, so he was second. He was third. So I have my daughter, Laura. Ashley. Ethan then Mitchell. Yeah. And then Wyatt. Yeah. Okay. And how old were you and your wife when this happened? Oh, wow, this is math. I don’t even think about probably, let’s see. We would have been in our mid 30s. Mid 30s. Yeah. Wow. I would have been 39. Natalie, my wife would have been, you know, 36.
Ari:Wow. Wow. You know, it’s funny, because I remember I remember my dad. Believe it or not, I remember my dad turned 39 Because it wasmy mom wanted to take the family move to Israel. And my dad was, was in business for himself. And it was doing very, very well. He we were definitely upper middle class. And she my mom was a very strong woman and she said, listen, we’re going and my dad goes like, she says, Are you coming or not? My dad, my dad, it was funny because my dad spoke to his accountant. And as a cat looked at him like, he’s crazy. He goes, What are you nuts? You’re giving all this stuff for what I mean, what’s in Israel. But my mom was adamant she wanted to go. And that’s why I remember that, you know, my dad was 39 years old at the time when when we moved. So it’s just funny. It’s, you know, ironic that you were 39 at the time.
Okay, so you’re 3936? All right. So now, can you can you take us back? And tell us, you know, give us the story. Tell us what happened. Tell us how you manage what you were going through?
Chris: Sure. You bet. And maybe I can just do a few clicks back in time to the moment I met my wife, you know, it’s just a really deep connection that we had, we had, I think we, when we dated, we, we, we never went to a movie, we never really did anything, but just talk for hours and hours and hours. And, and then, you know, fast forward a little while, and we got married, and we had our first and second child. And then Michel comes in to our life, our third child, and I’ll never forget, the moment I saw him, I had this distinct impression in the delivery room that something wasn’t right. I’ll though he was appeared healthy, there were all the signs and signals. He was a healthy baby. I had a feeling that something wasn’t right. And then for the next few years, four years, in fact, three years that I had this recurring impression that this little boy wasn’t going to live a full life. And I remember telling my father in law and others, close to me this feeling I had, and they thought, oh, you know, you’re just crazy. You just quit being weird and go back to living and I thought, well, I get it, you know, this is a feeling I had. So when Mitch was three coming on for he, his his aunt Natalie sister, was a pediatric physical therapist, started to detect little signals that Mitchell wasn’t on par with all the other children his age, so a little behind in some of his critical milestones. Incidentally, she had experience with children with Duchenne muscular dystrophy, the same muscle wasting disease. So she was starting to see these things that we didn’t have the eyes to see at the time. So we take him into the neurologist and they do some tests. And I said, Hey, I’m kind of busy today. Can you just call me I just thought it was something tiny, you know? And Natalie says, no, they said, You need to be here. So I thought, this is serious. I run over to the I think it was Radio Shack at the time or something and I grabbed a little recording device, and I brought it in, and I asked the doctor if I could record the meeting. And that’s when we got this revelation that basically our boy had Duchenne muscular dystrophy. And I had to ask her, like three times to describe what the disease was because I couldn’t understand it in my head, it was just so overwhelmed with instantaneous grief and worry and doubt. And then began the journey this little, almost four year old boy has diagnosed with with this muscle wasting disease, and we just fell into like almost a little chasm of grief, instantaneously, wondering what the meaning and future of our life would be. So quick question. Yeah. Is that would that be something like ALS? Great question. They manifest fairly similarly to ALS, except the cause is different and happens much earlier with little children. So ALS is also muscular, you know, degeneration or deterioration. So as Duchenne that little boys, little kid, mostly boys get it, almost 98% of all children affected, it’s usually an X link.Defect. And so these little children outpace the disease, they grow so fast that you can’t really tell it’s happening until they turn about 10. And that’s when the disease starts to outpace the growth of the body. And that’s when you start seeing these children fall down faster, have a hard time getting up off the ground, and by their teens, you know, they can’t breathe. late teens, they usually are on some kind of breathing device at night. They can’t lift the spoon to feed themselves. So it just it happens really rapidly.
So we saw that. So yeah, we we immediately put our house on the market to sell it and we wanted to build a home that would better accommodate them. And then, you know, we thought we would be okay for a little while. And sure enough, Mitch seemed to do really, really well. Until he wasjust after just before his 10th birthday. We went into get a routine echocardiogram to check on the health of his heart. That’s one of the early benchmarks. They want to start looking at it about the age 10. And they they saw that Mitch had some heart failure. And they said, well, let’s let’s get him on some medicine. And let’s see we can do to help him and so for the next nine months, Mitch was on some pretty aggressive medications and it did absolutely nothing to help him. And then we learned in November that, you know, he needed a heart transplant, we petitioned for it, we got denied.
And then just a few months later, we lost we’re like,
Ari: Whoa, stop, slow down.Hold on, first of all, was your sister in law involved in, like in the entire process all the way through? Or was she just like in the beginning told you what it was? And then you dealt with doctors and whatever. Was she a part of this? I love that question.
Chris: Yes. In fact, you know, there’s points a light project and doing it, her journey that intersected with us happened decades before we even had a baby, where she she began to follow this path in her life that got her prepared to really help our boy help identify, yes, the diagnosis, she was able to get us in front of somebody to get a clear diagnosis. And then from that moment on, she became kind of a second mom to Mitch. And she loved him and cared for him and came over to help my wife and our family, and became just a really tender blessing in our life. So yeah, she was with us every step of the way. Wow, that’s that that must have been comforting, as well. You know, knowing I know that my daughter is my daughter’s an OB GYN, one of my daughters is my older daughter is an OB GYN. And when my second daughter was pregnant, my daughter was was there every step of the way, you know, because this is what she does, you know? Yeah. So that’s, that was kind of, you know, that was a great feeling, you know, to know that you’ve got somebody on your side, that, you know, they’re going to cut through all the BS, whatever it is, and they’re going to tell you, they’re going to give you the straight poop. And you know, and they’re going to tell you, Hey, this is what you need to do. They’re going to be your advocate, basically. 100 or so. So that that was really great. You know, I’m very, very happy for you that you had that. Yeah. Okay, so so so what happened? So he’s, he’s 1011. And why didn’t they deny the high transplant? Well, they call it a contra indication, which is basically a pre existing condition that says that even if we fixed it, he wouldn’t survive. So we’ll give the heart to someone else that has a better shot at living. The decision not to give him a heart was sort of based on antiquated ideals on transplant. Mitch, reasonably had at least another 1011 years of vitality with you know, the advent of other assist devices, he could have lived long enough to merit the our transplant, but they denied it. And it was a real blow, it was a real setback, we had hoped that we could buy him some more time. But you know, even then, the body’s inability to create these these proteins called dystrophin that would actually repair muscle is that new heart would also succumb to Duchenne, you know.
Ari:So, but that must have been tough. I mean, you know, at that point in time, you not knowing, you know, what lays ahead, or what, you know, you’re only looking at you say, hey, this heart can help my son. Right? And they say, at sorry, you know, that’s, that must have been devastating. How did? How did your wife take to this? How and what was what was she going through? How was her, you know, reaction to this whole thing.
Chris: And whenever I want to look at a symbol of strength, I look at my wife, you know, she is the strongest human I know. And she was, I just saw time and again, hit these catastrophic denials of, you know, more life for our son, and she would rise like a mother lioness to defend her son, and do anything she could to pave the way for the best possible life for him. You know, we not only got denied a heart transplant, but we were also looking at an LVAD, which is a left ventricular assist device, it’s something they implant to help the heart stay regular. And, and vital would be the next best step for Mitch and he was just a hair too small for the existing l bats. So we just missed that window by six months or a year. Otherwise, it just, you know, would have fit in his chest cavity and could have been another means by which he could have lived but Natalie was just always looking for solutions and
Ari: Had a really strong demeanor around our son so as not to scare him, which is really beautiful. Yeah, that. Yeah, absolutely. Now what what, what about your other kids at the time? You know, well, how did they react? What was their reaction to the you know, to Mitch?
Chris: If you can tell us if Yeah, no, yeah, they knew what was going on, or very youngest boy was quite young. So we tried to manage information so he wouldn’t just blurt things out, not recognizing that it might be frightening to me. Mitch knew he was on a collision course with Duchenne. My two older children also knew it but what they did is just tried to help him with whatever strength he did have, because he wasn’t you know, it wasn’t able bodied regular child, they needed help getting up off the floor. My son Ethan would just fall on the floor and let little Mitch kind of smother him and wrestle him and beat him even though Ethan had a lot more muscle. He would just let his brother win for a minute. And that made Mitch feel really good. So they did all they could to just help Mitch have a regular life. Wow. Wow. And your daughter? Like, you know, I can just picture it like she mothering him. Yeah. You know what I’m saying? Is that correct? Very correct. I have such a tender photo. In fact of the night Mitch passed away. If Natalie and Laura Ashley, my daughter, sitting at the edge of the bed holding Mitchell’s hand as if to comfort is what remained, you know, and they just she loved him so much. And did all she could help Mitch feel safe. Now. So my understanding is that Mitch passed at home. Yes. And was that a? I mean?
Ari:Did he ever wind up in the hospital? Did he have stays in the hospital? I’m sure he must have no.
Chris: Well, great question. And I know I’ve been fast forwarding through things. But that’s okay. Because that’s what this that’s what this podcast is all about. We don’t care, we jump around, we just want to get the information as best. Good. So you know, and we try and make our guests feel comfortable. Well, you’re Thank you. And so in November, he was denied a heart transplant in January, on the second or third. He had an MRI, which indicated his heart was just at the ejection fraction, the speed with which the heart pumps blood out of the body was at 5%. And that’s, you know, zero was catastrophic. Most people are put on Hospice at 25%. So he’s a 5%. So we had a few weeks at home, where he had a few little touches of like, he’d called me at night when I was home, working downstairs, and he’d say, Dad, my heart feels funny. And I’d run upstairs. And I come into his room, and he was just listless. And I would just pick them up and hold them. And I’m like, not now. Not now. Not yet. And just love him. And he’d kind of come to. So one morning, he was really sick throwing up, and, and so we call the hospital and we’re saying, hey, something’s wrong. And they’re like, Oh, it’s just the flu. And we’re like, you get a table ready, because we’re coming right now. And so we raced down to the hospital, and, and they check them out. And he was he was about to go. And so they rushed him up to the cardiac intensive care unit. He stayed there for about a week. And that’s when we realized, the doctor came after doing about 10 hours of like, tests and things and confirming things. He’s comes back with tears in his eyes, pulls Natalie and I in the hallway, and he says, You have days left with your little boy. And he says, If I were you, I would run home as fast as you can and love this boy with all you’ve got. And so we decided to stay for a few days, so they could kind of stabilize them. And we did just that we took them home in a little less than a week. And then we had three weeks, three and a half weeks with Mitch at home where we were able to just love him the best we could.This is interesting. It happens when you come home from the hospital. They call it a rebound where, you know, for a minute, we for the first week, we thought oh, this vitals are picking up this was just a nightmare. All the doctors were wrong. But that was just Mitch kind of coming back with kind of new energy, but then the heart failure just started to take over after week two. So, you know, I I’ve noticed, you know, in general, and I saw this with my dad, that people that are, you know, basically terminal. Okay, very often right before they go. They’ll get like better. Yeah, you know, I remember my parents were living in Israel have a brother who lives there. And it was a Wednesday or Thursday. I don’t remember. And I called my brother and I said, you know, How’s dad doing? And he goes, Oh, dad, he’s really picking up, you know, they changed his medication. He’s looking better. He’s, he’s more responsive. He’s, uh, I said, you know, do I need to get on a plane and come? And he goes, No, he’s fine. You know, he’s getting better. And on Saturday, he died. You know, so it was like, you know, it was just look, he lived. Thank god, look, he was 86 when he died. So he did live a full life. You know, I mean, I was sad that I didn’t have a chance to say goodbye to him. But just just tell us now just give us that one last piece you wrote so beautifully. About that last hour or last minutes that you had with Mitch, can you just go back to that, please? And give us a little bit of that. I know it’s gonna be hard for you. But you know, we all I need to hear it.
Yeah, you bet. So the night Mitchell passed away, we had indicators from our, you know, just as signals that he wasn’t going to come back. And he was in a state of almost coma, he could barely squeeze our hands that evening, as the sun was setting, we’d say, Mitch, are you there? Can you hear us and he would gently squeeze our hand to say I’m here, Mom and Dad, I’m here. And by evening, you know, his room started to feel like a train station. Like, and I don’t mean to get weird are WUI here, but it’s something happened. And, and I felt like, you know, the time was really near and that his, his, whatever he is, his soul was going to move on. And so we just became a really sacred space for that few hours. We everyone kind of went to bed and my wife and I laid on mattresses right next to Mitchell’s bed. We did that for the last week because we didn’t want him to wake up and be afraid and was not be there. And my wife got up and started to administer some medicine at a little after midnight. And she he’s he’s body felt cold. And she called turned over and called my name. Oh, actually let me back up. A really sacred thing happened before he passed. I had this feeling I had dozed off into a deep sleep. I was really, really tired. And I remember having this feeling like I was being nudged. And I instantly awoke and it just said, my feet. This thought to my mind said, tuck my chin because that’s what I did every night I would tuck him in. So I go up and I whispered in his ear, I pull this blanket up over his chest to keep him warm. And this little puppy, puppy Marley was just a brand new shoe Eagle Puppy was curled around his head. Is it to comfort Mitch, I have pictures of it. It’s so beautiful, so sacred. And I whispered to my sons here and I said, Mitch, I know you’re tired. I love you, Mom and I are so so proud of you. I remember telling whispering I want to be like you when I grow up. I mean, and I just said, It’s okay. Like you can go you know, we we love you. We’re not disappointed. We were so proud of you. And I just gave him permission that when he felt like he needed to go, he could go and
I go back to bed.And maybe 3030 minutes later, my wife, you know, I hear her name. And you know, it felt like 1000 nuclear bombs blew off it right above me. And I just instantly charted out a bed and she goes, she had this look on her face. He’s gone. And I ran over. And you know, it was really, really hard just to see.
And they say that’s what happens with kids is they
you know, they don’t they wait till mom and dad leaves the room. You know, even though they appear unconscious, they they wait because they don’t want to disappoint us or make us sad. And and I think that’s what he was doing is hanging on. But you know, he knew he was okay. We love them. We’re proud of them. And so, you know, we had that moment. And I remember for that rest of that evening and a middle of the night having this feeling of still the heavens were black. Where is God in all of this? I thought
that was it. So I guess naive as to think I would be the only human exception to suffering that happens all around me on the news, you know, so I was just thinking, Where are you can I just feel something. And I had this distinct feeling that these little points of light, we’re all around me if I just look upward metaphorically heavenward, but whatever, and begin to recognize the little tiny blessings that were all around us all the time from the beginning of time. And all I needed to do was just take a moment let my spiritual eyes adjust to that new darkness. And I could start to see these little tender mercies these little points of light that would be like constellation so that I could look upward and go, You know what, this is the hardest thing I’ve ever experienced. But I know we’re not alone, that things happen in an order in a sequence that often only in retrospect, do we make sense of it. And I’m going a little further than what I wrote. But that essays called nightfall, and it’s about this learning to see in the dark and recognize those tiny, faint blessings, those good things that happen from God from others. And we can be grateful for that and find meaning and bearing in our life when we take the time to look at that. Those are the whispers he also the whispers those are the whispers Yes. Very often, you know if to the brick, you know, that’s when we kind of wake up to the whispers and we say, I don’t know why I didn’t listen to all this time. Okay, but now I will. And now I’m going to go on. Yeah.
Sorry. Thanks.
Ari:So, tell me so what are you doing now? You’re on a project now.
Chris: What? Yeah, tell us a little bit about that. Yeah, yeah. So I started just before my son had passed, and for the last eight years, I’ve been writing on a blog called Mitchell’s journey, which kind of Chronicles our life experience and making sense of suffering. And it isn’t all despondent. It’s about, hey, this hard thing happened. But look what I’ve learned from it. And now I’m starting to shift my attention to this project called 1000 Points of Light, which really was born on the night my son passed away. And that essay nightfall that I have. So my hope is that is people began to find a framework to look at the events in their life, they can start seeing connections that were before totally invisible to that. And when we start seeing the connections, you know, I met Carly through my blog, and now I’ve met you, and you’re a point of light to me, because I think there’s a lot I’ll have to learn from you, in the coming years as I listen to your podcasts, and perhaps we have other conversations. So Points of Light, it’s really all about helping people step back from their life, and recognize the good, the bad, the ugly, and draw the connections. And by the way, the one thing I’ve learned is I’ve done this work with people. I’ve been doing these workshops for the last seven years kind of testing out points of light, what does it mean? How can it help people that often the hardest things we experienced tend, in retrospect, to be the most profound and greatest blessings in our life, the loss of a job could put us in a totally new trajectory, that looking back was the best thing that ever happened to us. So I’m hopeful that this project can really give people the eyes to see things around them a new,
Ari: I’m sure, I’m sure it will.
Wow, my eye, I’m having a difficult time. This is my hardest interview I’ve done, by the way, but this was so worth it, I’m so happy that I met you. And I’m sure my audience is going to,
you know, just
follow you, or write it with the with the kind of hope that you have. It’s just, it’s just gonna, you know, it’s gonna fill them with hope, I think. And I think it’ll give them a point of reference of, hey, my life’s not so bad. You know, and I think if we’ve done that, if you’ve done that, I think you’ve done what you were put here to do. Alright, and that is to help people and that’s great.
So is there any, any other words of wisdom maybe that you want to share with my audience?
A sentence motto? A, some advice, some sage advice? Wow.
Chris: I just I, Carly once asked me to share some ideas on lessons. I don’t have lessons. I just have observations because I’m still such a student of life. But I think that I’ve learned personally that I benefit best when I leaned into the hard things and examine instead of run from them, look at the hard thing. Instead of asking, Why me? I asked, What am I to learn from this? How can I take this hard thing to make me stronger, more compassionate, more discerning. And so that’s, perhaps the best tool I have for me is to lean into the things that hurt because they’ll help help us become something new. That that is great, great advice. Great advice. So now, if people want to get a hold of you, if they want to get involved in your project, maybe or they just want to, you know, they just want a shoulder to lean on maybe Alright, is there any way they can get a hold of you as you do have a website? Yeah, for sure. I did two ways to get a hold of me the two places I’m really active one is Mitchell’s journey blog, you just Google it will be the first thing you see. And then also www.1000pointsoflight.com, which is where I’m beginning this new work. And I think it’s my life’s work. It’s where I’ll be for a long, long time. And you people can email me there at chris@1000pointsoflife.com. And so there’s Yeah, either site has a email catch, you can send a message if you want to reach out to me.
Ari :So that’s great. Chris, thanks so much for sharing your story with my audience. You know, I’m sure you’ve touched the hearts of most if not all the people my audience. Good luck going forward with your project. Keep up the good work. Keep inspiring people you’ve totally inspired me.
