Conquering Chaos

Ep 14: "Love, Kennedy" - An Inspiring Story of Faith with Jason and Heather Hansen

July 02, 2019 Season 1 Episode 14
Conquering Chaos
Ep 14: "Love, Kennedy" - An Inspiring Story of Faith with Jason and Heather Hansen
Chapters
Conquering Chaos
Ep 14: "Love, Kennedy" - An Inspiring Story of Faith with Jason and Heather Hansen
Jul 02, 2019 Season 1 Episode 14
Erin E Hooley
Jason and Heather Hansen lost their beautiful 16 year old daughter Kenndey after a long and difficult struggle with Batten disease. Their miraculous journey is one of hope and faith in which they have been able to turn pain into purpose, and through the sharing of Kennedy’s story impacted millions of lives.
Show Notes Transcript

Jason and Heather Hansen share their inspiring story of not only loss but incredible love. 5 years ago the Hansen’s lost their beautiful 16 year old daughter Kenndey after a long and difficult struggle with Batten disease. Their miraculous journey is one of hope and faith in which they have been able to turn pain into purpose, and through the sharing of Kennedy’s story impacted millions of lives. 

They travel the world together speaking and keeping Kennedy’s legacy alive. Director TC Christensen was so moved by Kennedy that he produced the film "Love, Kennedy" which shines a beacon of light on the darkest of human circumstances.



Speaker 1:
0:01
Welcome to the conquering chaos podcast. I'm your host Aaron, equally president and founder of multimillion dollar e-commerce children's clothing line, Bailey's blossoms. So it turns out I'm pretty good at business, but what really lights my soul on fire is providing other entrepreneurs and mompreneurs with the tools they need to truly succeed. So if you have a business or have one on your heart, you're in good company, pull up a chair or dropping some ear buds and let's conquer some chaos today. Today's [inaudible],
Speaker 2:
0:29
the guests are husband and wife, Jason and Heather Hanson. They'd been married for 22 years and have three children together. We recently had the opportunity to have Jason to our house for dinner and listen firsthand to their story of not only loss, but incredible love. Five years ago, the Hanson's lost their beautiful 16 year old daughter Kennedy after a long and difficult journey with batten disease. And as a parent, I can't even begin to imagine the pain and the strength that that would require. But the most remarkable and inspiring part of their story is their ability to turn that pain into purpose. And through the sharing of Kennedy story have impacted millions of lives. They travel around the world together. Speaking and keeping Kennedy's legacy alive. TC Christianson was so moved by Kennedy that he produced the film love Kennedy, which shines a beacon of light on the darkest of human circumstances. After listening to Jason, I knew I had to invite both him and his wife onto the show to pour some of that light and strength and to each of you, Jason and Heather, it is truly an honor to have you here with me today.
Speaker 3:
1:36
Thank you. We're happy to be.
Speaker 2:
1:38
Thank you for having us. We're on, or I'd love to just turn the time over to you guys to allow you guys to kind of share and walk, walk everybody through who you are, who Kennedy is, and a little bit of her story.
Speaker 4:
1:50
Okay, Heather. Nightmare. We'll go with Ben. We'll go married. We'll be married 23 years.
Speaker 2:
1:57
I always get [inaudible] so I've said
Speaker 4:
2:00
24 21 what? We've been married 23 but we've been together for 24 years and we met at college, at Weaver State University. We got married and when we first got married, um, I was going to school, Heather was going to school and working before I graduated. During that process, Heather got pregnant with Kennedy and Kennedy was our first daughter. And the miracle of that was that at the time we didn't know that we would never be able to have any more children other than kidding, biologically. And so to us, candy was a surprise.
Speaker 3:
2:36
Yes. We were not planning on having children at the time because we were both in college and wanted to fit in certain careers and then look at having a family and other plan popping Fridays when we found out pregnant, not planning or intending at all. So that was a miracle in itself too, that we even got pregnant as we were trying to prevent. Um, and then like Jason, Eh, finding out later down the road years later that we really couldn't even have children. And so miracles started immediately yes. In our marriage. That's amazing. Yeah.
Speaker 4:
3:10
And but she was, Kennedy was just, she wasn't perfect, but she was, she was a delight. She was so easy from day one. And even when she was born, it was funny because when she was born, she, she just came out and kind of looked around and didn't even cry, just kind of made a little squack and smiles. So she, she was ready to be here and you know, she was incredible. Um, from day one we really wanted to have six kids and we tried and try and try everything, you know, that we could even medically. Then they finally said, well, you're just not going to have more kids. So with that we were blessed enough to actually adopt Anna, who's now 22 and Beau who is now 11. Um, we also adopted another little boy, um, that we actually waited for for quite some time over a year.
Speaker 4:
4:01
And then we got him, we had him for about five weeks and then hit through the court system. His mom, mother ended up taking him back. That was really hard on our family. And then in 2013, um, we were given the news that our daughter Kennedy had a, sorry, so you made me cry. I haven't cried. I haven't cried in a while. So this is good. And just there's a saying I say is tough guys cry. So she was diagnosed with a terminal batten disease and she, uh, passed away. Um, a year later we held their funeral year. The date of her diagnosis is. But through that journey we looked back and we saw all these miracles that have happened on a life do. We really didn't realize we're a preface a to her touching millions of people. And she used to always tell us, mom and dad, my story will be shared with the world. We'd say, what are you talking about? Be shared with the world that's so cocky. You know, you don't see things like that. But she knew she, that her story would be shared at the world. And so yeah,
Speaker 3:
5:02
she would, she would tell us, you just, you don't understand. You just don't understand. And she didn't know how to explain it. And, and we didn't understand until everything kind of started unraveling and obvious thought, well this is what kindy was talking about the whole time. We just, we do, can see the whole picture. So we're seeing it now and it's been a blessing to us as her parents because it's been blessing lives of a lot of other people. And that's what brings us true joy and happiness through our journey with, with Kennedy and the struggles that we had to go through with, with her and her disease. Absolutely. Thank you. I love that. And I love that it's, that those miracles started from day one and that the time when they did, did you see them as miracles or was it or did it take some time for you to recognize that hand?
Speaker 4:
5:54
Well, let me, let me back up. Um, so there's been movie made that is called Love Kennedy. You can go see it on Amazon prime for free. But anyway, um, in that, that film, 95% of what you see really happen at 95% of what you hear is our exact words. And when I was 18, shortly after high school, I actually had a dream, um, where I saw Heather and Kennedy, I mean my dream. And I was just a kid and I had this dream several times and I didn't understand the dream, but the book gives more detail about that. But that's really when it all started for me was, is that, you know, I, I saw her in my dream and I saw Heather and I didn't understand all that it meant, but in my dream, uh, I get this enormous hug from Kennedy and, uh, we, my dream, she's probably about three years old.
Speaker 4:
6:47
And so that's when it started. And so then you fast forward all these years and one day when she was three years old, I'm sitting there, you know, thinking about it and I'm like, oh my gosh, that's her. That's Heather. So that's when it started. And then in our life we were just like any family, we are trying to make ends meet. We were trying to just pay the bills. We were trying to raise kids. We are trying to, just to have fun, you know, 4th of July is coming up. So we would be like, we got to get ready for 4th of July and have fun. And then, you know, we're like any family, you get everything ready for a party and then you walk out in the dog's chewed every
Speaker 2:
7:23
or it's raining or whatever. Sick.
Speaker 4:
7:27
Yes. Yeah. We just went with life and love life. And we had so much fun with, with Kennedy and our other two kids, um, and Anna when they were little. And so, you know, but as we look through, I was not a good journal keeper, but anytime something major happened, I wrote it down. And so we're grateful for that because then when we got the opportunity to share her story, especially at the end when she got sick, she said, dad, please, please share my story. So we went to Facebook when Facebook was big. I mean, it's still big, but I mean, when it was really, you know, the only thing, there wasn't Instagram and around all this stuff. So we started to document it and it ended up that she had about four and a half million followers, you know, and all we did is share what happened every day for the rest of her the last year of her life.
Speaker 2:
8:15
But to me, I think that that's just such a depiction of how much the world is starving for light. And they may not even know that that's what they're starving for. But when they feel that, when they, when they sense that and they kind of cleaved to it and they run towards it and they don't even know what it is that's drawing them in. But it's really, it's that light. It's that faith. It's that hope. And that's what I love. And when you were talking at the dinner table as surrounded by our six kids who that was, it's funny, that was a miracle in and of itself because our kids never leave us alone when we have a guest never there hanging on the person, they're causing a Ruckus. And we're like, okay, time to go. But they mean, you can attest to this. They all quietly slipped out of the room. We had a conversation and not until after it was over when Brynn and I were driving were going, did you realize that our kids were perfectly quiet like for over an hour. I mean, that's, that's incredible. But it was really, I think that that was really the Lord just kind of clearing the noise so that we could really focus in on the things that matter most.
Speaker 4:
9:19
I agree in the spirit. There's a wonderful spirit in your home. I love being there. And what's interesting is that I, so in our book there's the saying that that we have in it's, you always, always listened to a higher power, which is the spirit. You'll know exactly what to do. And for the listeners that don't understand, I've done some business with the hoolies and they're incredible people and you know, I call them they're full of integrity. And, but when I was in Dallas, I mean, Not Dallas, Austin, a business, I just had this strong, strong feeling that I needed to go visit the hoolies, uh, not just for business. I called my wife and I said, I am extending my trip a day, um, because the spirit's telling me that I need to go visit them. And so I drove whatever it was, four hours or whatever and was able to go see the business and stuff. But I really don't take this the wrong way. I didn't even care about that. I cared about you. So to me it was, I mean, I care about it, but it was more gratifying to come there and feel of your family and fill of your, of yourselves. And Yeah, I thought your kids were just perfect. I'm like, man, how'd they get them to be like,
Speaker 2:
10:23
no, it really was. And that's the biggest thing that I think is sets the stage for this entire, your entire experience, your entire life's experiences. Man. Hindsight's 2020 for a reason. You look back and you see all these pieces that just seemed like jumbled, mess, painful, agonizing at times. And then you go, oh wow. There were lessons in here that I needed to learn. There were, there were pieces that I couldn't, I couldn't have progressed without this. There's people I needed to meet. There's lives I needed to impact.
Speaker 4:
10:57
Well, and that's we, to give an example, Heather wanted six kids. I want it five or six. And so we bought this huge house. You know, I'm prepared for the these six kids and they never came. And we, that was the biggest challenge for Heather more than I like why I can't, I have kids I don't understand. And I kept telling her, we'll know one day, I don't know. And, and then with this house then I'm the breadwinner. So I'm going, holy cow, I have this massive liability hanging over my head every day. I've got to work my bones, you know, fingers to the bone to, to be here. And the people like, why don't you just sell it? And I'm like, cause we're supposed to be here. And so we raised our daughters here, candy and Anna. And then of course we got both.
Speaker 4:
11:41
But as time moved on when Kennedy got sick, and I mean really sick when she got the point where she, you know, had to be in a wheelchair and whatnot every door in our house. But one was a wheelchair accessible door. Everything on one level, because it's the house is, is, is fairly large, about 7,000 square feet. And when you watch the film, it's in the movie. That's our home. We let them use our home to film. But every single thing that we needed that we would have had to have a lot of baton families. So the disease baton is really ugly. I mean, I mean, imagine having cancer, epilepsy, Parkinson's, um, um, als all mixed together. You know, that's what it is. It's just a horrific disease and it kills the brain in a nutshell to make it easy for our listeners. And it basically debilitates the individual to the point where they can't function anymore.
Speaker 4:
12:31
So Kandi was fortunate because she actually really only had to suffer for probably, I mean, she had problems but real suffering for two months before she passed away. But then over the years there was declination. But the point is, is that this house, we were supposed to be here because of her abilities to build, to navigate, and she was blind. So she learned the house and all of her younger years. So then when she was blind, she was able to learn to, to go throughout the house for almost two years, fully blind. Furthermore, there's a movie made that was in this house and when the producers came, they said, we never asked this, but we're gonna ask, can we film it here? This is a perfect setting for our film. So it all worked out. There's no amount of money, none that you can replace, you know, the things that you're going to touch others with. And so I think that yes, you look forward and then you look backward and you realize that all these things were supposed to happen for, for, for reasons that aren't necessarily for you. So that's one experience.
Speaker 3:
13:32
Well, and I'll just share something real quick too. As Jason was talking about our inability to have more children and how hard that was on both of us really. Um, but probably particularly more for me. Um, I remember asking those questions and saying, you know, as I was praying, I don't understand this. This isn't fair. This everybody else is having children. I was still happy just I'll go into their baby showers and yet wanting to celebrate that joy for them and inside being torn because I didn't get to be able to participate in that. And um, for years we did not understand, but I knew that at one point, like Jason Originally said, we would get those answers sometimes. I don't know, maybe not in this life. Right. So when fast forward to when Kennedy got her disease and um, it's a neurological disease baton, but it's also genetic. And so we found out that it's because we both carry a gene. Had we had more children, there would've been a big possibility that they may have had the same disease to wow. I look at that as also another miracle of hard things happen in our lives and we don't always understand why. And sometimes it takes a lot of time and a lot of years and a lot of faith hope that it'll all work
Speaker 2:
14:52
out, that we do get those answers. And it really was a blessing for us that we could not have more biological children because the Lord knew that there's no way we could have done that with more than one child. So, yeah, absolutely. So I'd love to know with your guys' relationship, and I've seen this a lot, especially with big, big trials and big struggles at 10 stuff or draw people closer to one another or drive a wedge in between them. How, how did that look for you guys?
Speaker 3:
15:22
Well, we decided and sat down as a family after we found out what Kennedy's disease was and what it was going to involve. And we talked about it and we had this open discussion with our children. And especially between he and I, you know, when we were alone of, okay, are we going to let this build our family and strengthen us and use it for something good and inspire others? Or are we going to, um, digress and are we going to fight about it? Are we going to just huddle in our house and not expose ourselves to anybody, to not share our, our experiences? And you know, there's the opposite of, of what you could do for good. And so we each decided that it was best for us to, to have hope and use it as a tool to bring goodness to this world and, and to each other.
Speaker 3:
16:11
And you know, we, Jason, I grieved differently and we know that and we accept it and we let each other do what we need to do. And we have that understanding so that it doesn't pull us apart because, oh, what is it? Maybe 90 85 90% of couples now that, is it higher? I could be that have a child with a terminal illness or something very severe like that end up in divorce. And some situations that would be appropriate. But for us, we decided ahead of time and before things even more difficult what we were going to do and how we were going to help one another through this and as a family rather than let it tear us apart. Yeah.
Speaker 2:
16:54
And that's incredible. And especially because not only did you, did you persevere through that together, obviously successfully, but then to have both individually and collectively have the strength to turn it into something that could make an impact on the world for good, to, to build her legacy and to continue her legacy forward by allowing her, not just to just make an impact of people during her duration on the earth, but then after it as well. Was that something you are both on board about from the beginning or did that take some time?
Speaker 4:
17:27
So, and the way that started was Kennedy, she was declining for years and four years before she passed away. Again, we call them Jason Moments because I have this curse. It's a blessing and a curse, just like with you, you know, um, the spirit will tell me, go do this. So I just don't question anymore, but sometimes it's not what I want to do, um, or I want to hear. And so four years before she passed away, I hadn't experienced that. And it talks about it in the movie in the book where I was told that she was, she was going home and I was told specifically that one one morning when I was praying and I went to Heather and told her, it took me a couple of days, this is the experience I had and heavenly father needs Kennedy home. I don't know if she's going to get hit by a bus.
Speaker 4:
18:15
I don't know if she's going to get disease. I don't know. Cause at the time, that was four years before, so she was 12 years old and she had started to lose her eyesight and it started to have some learning disability, but socially and everything else, you know, she, baton actually is a, is a declination back in different areas. So she still was boy crazy. She still was in sport. She still is, you know, doing all this stuff. She did. So we didn't assume it was a disease. But when I told Heather, Heather says, no, I, I, I can't accept that. There's no way because sure, mom died from cancer when she was 15 and Heather took care of her or their family and that was brutal on her family. And so how there's like, I don't want to accept it. So I only shared that experience with a few other close people to me that were friends and family and even had a meeting at our house.
Speaker 4:
19:08
And I said, I'm having this meeting because I don't know if I'm going crazy, but I've truly felt this and I felt that the people that were in the meeting were the people that would be my greatest support. And unfortunately, one thing I've learned is you have what's called rescuers and then you have what's called life firsts. And rescuers are the ones that when all the crap hits the fan, they will run to you and they will try to do everything they can to help you the most. The rescuers they go away, lifers are there forever. They're there no matter what. But in that meeting, there was some that behind my back for those years where like Jason's losing his marbles and thought I was so you can imagine that was for years. So I carried that burden for three years alone. But here's the answer, your question. The reason I'm sharing that is that Heather and I aren't the best data we try. We pray every night together. You know, we tried to nail down some nights, like the other night was one 30 in the morning and I'm just like, oh, I am so dead tired. You know, you say the prayer, but we nail across the bed from each other. We have this huge gargantuous bed. Now he's telling people this tonight how to get civic me here. But she has not a snuggled,
Speaker 3:
20:23
you don't have to touch her sleep. I want to tell you, leave me alone. Don't touch her
Speaker 4:
20:29
sleep and don't eat her food.
Speaker 3:
20:32
So true. So, so what,
Speaker 4:
20:35
so what ended up happening is, is that we pray every night and every night for those three years. I would say every night you need to get ready.
Speaker 3:
20:45
Yeah. And that everyone accepted, believed he had that experience. Cause I knew in my heart he did, but I didn't want to accept it. So I would just tell them, no, I'm not, I'm not going to accept this. I just do not want to accept it.
Speaker 4:
20:59
And so, so as we got closer and as things happen, it was about six months before the diagnosis is that we had said prayer one night, gone to bed. And it was, it was, it was in the middle of the night. It was like maybe two or three in the morning. And I woke up and then we have a little cubby in our room with some sitting chairs and Heather was sitting in one of the chairs and she was crying. And I went over to her and I said, well, what is going on? Are you, you know, you okay? And she said, I'm so sorry. She says, I was awoken. It's been confirmed. We're going to lose Kennedy. And I finally was like, Oh yes, because you know, I carried that alone for so long. And every day I'd look at candy like, Oh, what do I do? I'm a loser.
Speaker 4:
21:51
So how do I, what do I do? And all I could do is love her. You know, all I could do is be like, I need to raise her and teacher the right things because she doesn't have a lot of time here. And so I, I did have my, my earthly father, his name's Doug, Doug Kanutson, he's amazing. But he actually was very supportive of me and he believed, you know what I said? And my mom did too. But my dad and I would have these talks and he would just be like, son, all you can do is go by the spirit. So when we were finally together, we were arguing. We never argued about Kennedy. Oh, we argue. We can argue really good. We never argued about Kennedy ever. But now we were together and, and at the time also we were going to primary children's hospital almost weekly at that time because that now candy was really declining.
Speaker 4:
22:42
She was going, she was almost fully blind. You know, she was losing some mobility. She was having seizures, cognitive delays, and all these things were happening. So we wanted answers, but now we knew. So now it was like, okay, we both know we are going to lose her, but we still didn't have the diagnosis. So all that happened before we had a terminal diagnosis. We didn't know. We didn't even know what she had. You know, some experts like, oh, she just has epilepsy. Oh, she just has stargardt's disease blindness for children. Oh, she just has a learning disability. Oh, you know, it was, there was no definitive. So when we both got the definitive answer, the on June 5th see there's paramount dates. June 5th, 2013 I was gone with a group of Scouts in Moab. Heather was home and we got the test result back through a phone call.
Speaker 4:
23:32
There was terminal juvenile batten disease. And so Heather called me and I, and we, we talked. I was in the middle of the desert. I don't know how my phone worked. It wasn't supposed to work another miracle, but it worked. And as we talked, we both, it hit us that like Heather said, oh my gosh, if we would've had more kids now this all makes sense. Yeah, that's, we were thinking, of course we were worried about Kennedy. Of course we were worried about our family, but that's what hit us the hardest is wow, we've really been blessed. Now we've got to take care of Kennedy, now we're going to make some decisions. Yeah. Because then we didn't know how long is she gonna live, what's going to happen. But in that meeting we had at their family, so I was telling Heather all come home, I'll leave these boys and come home.
Speaker 4:
24:18
And she says, no candy wouldn't want that. So that was a long three days. But I came home after three days and that's when we had that meeting with our family. And that is where really all, that's what we were really on the same page. Okay, we're going to go share her with the world. And that's what the Kennedy wanted. And we said, we're going to live a million lifetimes in a year. And we both fell. It would be a year. We both had this overwhelming feeling. She's got one year to live and her funeral was held a year later. So
Speaker 3:
24:49
the thing is is is Kennedy did not want her story shared for all the wrong reasons. She didn't want it to be famous. It's that then people would say, or to get attention. She just wanted to share her journey to be able to help others, to be able to give hope and until let them know, you know, look at what I'm learning, especially through this whole thing is you look at all the small little things and are so grateful for those little things because somebody else's situation is a lot worse than your own. And sometimes we can get so wrapped up in looking at the difficult things we're going through that we cannot see the light and the hope and the little miracles and the tender mercies that are present every day. But if we just take time throughout the day to focus on those little tiny things we're grateful for, it changes our perspective on the whole journey and gives us that hope and gives us, um, the strength that we need to be able to, uh, overcome and go through the difficult things we have to face in life.
Speaker 2:
25:54
Absolutely. And you guys are such a beacon of that strength and that hope and that light and Kennedy clearly, clearly was as well. And I'd love to understand what, what are some of the things about Kennedy that, that made her impact so profound? What were some of the things that she did and that she exuded that really touched people in the way that, that she's been able to touch them?
Speaker 4:
26:17
Well, the greatest statement I ever heard from someone about Kennedy was around, around her funeral, and it was from somebody that I didn't think was that close to Kennedy, but they said, you know, she was my best friend and I kind of looked at this person like, what? Because he, he was a, it was a guy. I'm like, either he said, but she was everybody's best friend. And so, and that's if you ask Kenny who or best friend was, she'd always tell you heavenly father and Jesus Christ. Huh? She'd always say that first and then she say that my family, but then everybody. And so that was all there. And if you asked there was, there was the cheerleaders who she chose, she was a cheerleader, which was an amazing experience. She always wanted to be a cheerleader and her disease took that away from her.
Speaker 4:
27:09
And so they thought, well they saw her at a game cheering and she was, she was like belting it out. Like she went, she walked onto the track, she wanted to cheer so bad that she walked down like, where are you going? So she has her cane and she goes on there and this is in the movie. And I chased her down there and she's chairing and the cheerleader saw that and they thought, who is that? And then they heard through the grapevine who she was and they, some of them knew her and they heard that she had a terminal illness. So they thought, well let's let her come cheer one game with us. They did that and she could cheer cause she was in dance and share her whole life. She cheer and she could jump and she could scream and she could yell. She was louder than all of them put together. And so they made her part of the team and she cheered every single game, every single assembly, even up until two days before she died in her wheelchair. So I would say, you know, being a friend,
Speaker 3:
28:09
her ability to love everyone no matter what their circumstances, no matter what wasn't done, he would only be composing. I am taking over to let him, but she didn't judge others. She did not say or look at Yo, they're not the same religion or they're not the same color. They don't come from the same type of family or they don't, you know, aren't fit enough or pretty enough or whatever it was. She never ever judged anybody like that. She knew and wanted to know their hearts and accepted everyone and that was an amazing gift and ability that she had that we can eat. Try to accumulate ourselves in just loving, just not judging, you know, cause we don't know what somebody else's situation is. And if we have that picture, if we had the understanding how much more compassionate would we be towards others. And so her ability to love, show love and acceptance for all, um, was one of her greatest gifts.
Speaker 4:
29:15
And then I just going to say she had [inaudible] she had unending faith. Yeah. She, she, she, man, it was proven at the end of her life. Um, and that, this may seem cliche or cheesy to some, but the last year of her life, you know, she could say, I want it to rain m and ms and I swear it would've rained. M and. M's, uh, she, she told us one day, my favorite band is imagine dragons. I love them so much. And so she would sing the song radio active, you know, and she had some cousins that introduced her to the music. And One day she says, Dad, I'm going to meet them. I'm going to meet them at their concerts. They're going to sing a song to me. And I was like, what are you talking about? Do you know how popular they are? They have, they're the number one band in the world right now.
Speaker 4:
30:03
And this was back when radioactive came out. And so she would sing this song, whatever cousins filmed her, seen it and put it on Facebook. And back then if you had 10,000 followers on Facebook, you know what happened? All 10,000 with two of your post out floated around and somehow got full circle to Dan Reynolds and the band. So I'm driving down the road one day to work and I get this phone call and it's like, Hey, is this Mr. Hanson? I said, yeah. He says, Hey, this is so and so. I'm the manager for imagine dragons band. Dan Reynolds wants to meet your daughter Kennedy. And I'm like, what? Are you serious? He says, he says, yeah. And so they came to Ogden to a concert. Things were arranged and Kennedy is like, I told you, I told you. And so she was able to go down and meet them before the concert and they started the concert like 10 minutes late because they wanted to.
Speaker 4:
30:58
When you got around her, like Heather said, that love that, you know, feeling of what people wanted to be around her. I kind of like towards the end of her life I was like, can we get these people out of her house so I can have it dad time, thousands of people, not hundreds coming in and out of the door of our house because everybody would hear about her. We had people drive. We had people who didn't know very so the celebrity she has herself, but she was in tune and she loved everybody in. A famous thing she has is Kennedy's hugs. She was famous for hugs. If she would hug you no matter what, if, if you didn't want a hug, you're getting a hug. You probably learned that from us because that's how we are. But she amplified at times 50 and her hug was kind of like she grabbed you and hug you and then bring in and just squeeze you like crazy. You know, and just hugging, you were like, oh, you know you're going to shoot. And so people don't forget that, but to this day we just had our five year anniversary of ever passing and it's so amazing how many people really think that she was her best friend. Like I said, she's like, no, she was my best friend. No, she was my best friend. No, she was my best friend. And so that's how the world feels about her. She really was like the movie portrays. That's just how she was. It's incredible.
Speaker 2:
32:18
That's incredible. With the movie, and obviously I'm and the book and being able to travel and share this story together, what is, what is the ultimate goal for you as a family and as a couple? What would you love to see come about through this? Obviously there've been lots of miracles that can you touch on some of those and and your thoughts there?
Speaker 3:
32:41
So our goal, well first of all, our in intentions of the book and in the movie and everything, we're never to get worldly gain in any way. Right? And back. That was one of our rules that we said, we will do this and we will share what we can, but in no way do we personally to have to benefit and profit off of it. And so if there are any funds that come in, it goes into Kenny's eggs foundation and goes back out to help other kids that have gotten or people who've lost children. I mean anywhere, anything from helping to pay for funerals, to take your families on trips or whatever it is that we can give back is our intentions. And so, um, we just, we're, we're not, in fact, somebody asked Jason the other day, how many books have you sold, how much money you made?
Speaker 3:
33:33
And we were like, wait, we don't even know. Like we just, we have no idea. And because that's not what's important to us and that's not the purpose of, of this. The purpose for our family and for continuing to do what we do and to share our journey is just to bring that hope to people, to let them know that there is a greater plan for each one of us to have faith and to just trust in whatever it is that you believe. Just put trust in that and to never doubt who you are as an event, as an individual and that you have potential as well to change everyone around you and to be on light for goodness in this world. And so I think as an overall encapsulation, that's just what our intentions and our purposes are to, to share that with the world because there is still so much good and then, and sometimes it's hard to see that with all the bad and the the negative being thrown at us. But we can be strong and we can make a difference like Kennedy did each one of us and make a good positive impact on one another. And that's what's really the most important. That's what we should really, truly be focusing on.
Speaker 2:
34:44
Absolutely. You know, it's, it's so interesting because for me, obviously having a podcast is a part of my business and being able to reach and to help other people. And yet there was something, I woke up this morning, I'm, oh my gosh, I'm going to be a mess. But I woke up this morning, I could just feel it was different than today. It was different. And I never had the opportunity to meet Kennedy. But I know that I can feel her today and I can feel your guys' strength. And I hope that everybody listening to this episode can feel that to the degree that I'm just overwhelmed with it right now and do that. It can provide a sense of perspective and it's in a sense of that light that so many people are missing. And really just give somebody, give everybody something to hold on to, something to look forward and, and to just open our eyes to all the little things, all the little miracles all around us.
Speaker 2:
35:45
Cause once you start to notice those things, your ability to see and to and to feel is amplified in a way that you could never do alone if you felt like you were trudging alone. So what I love about Kennedy Story and what about your story is that it's a clear indicator and and proof that nobody's walking alone, that there is no loneliness in this. And despite how much pain and sadness is that Tom, at times accompanying those struggles and those trials that just to open your eyes and to take off the blinders to realize that you're surrounded by people, but by people in this world and and beyond that are all trying to help and buoy you up. I cannot thank you guys enough for, for really just taking the time out to, to share a bit of your story and, and the love of Kennedy and his deport that into my community. I know that that this will be, so it will be something that they can really take away from and really give them perspective in light to continue on through their day and through whatever struggles and trials that they're facing. Um, where there's so many different places where people can learn more about you and your story. Would you be willing to kind of share where people can find more about you and about Kennedy and, and all of the wonderful miracles and additional light and hope that that that can provide.
Speaker 4:
37:10
Yeah. So Heather doesn't do social media, so I have to answer the 400 messages.
Speaker 3:
37:18
Um, wait, you does not get, we apologize in advance if you're the masters, we apologize so well
Speaker 4:
37:26
we, if you go to Facebook under Kennedy's hugs, h just Kennedys, k e n n e d y s hugs huds. That's our Facebook page. And we used to write every day, even after she passed away, we used to write posts every day or every other day about things. And then when the movie came about, well the book really cause so Kennedy asked us to write a book before she passed away. That's how that all started. And that was very hard. Um, that was emotionally extremely probably the hardest thing we had to do because we had to relive every single moment. And thank goodness for journals, thank goodness for Facebook that we wrote those posts in her last year of her journey and that we kept journals from the tension was born until she passed away. And Kennedy, I'm going to tell you some entry that actually involves you, is that today is, are I got to go look yet?
Speaker 4:
38:26
All I can remember today is our 227th time speaking to some [inaudible] in a forum. You know, since she passed away in five years. And she told us before she died, like we said, share my story with the world. But she said, you'll speak incessantly. And we're like, what do you like? Where would we speak where, you know, and so we've had the courage, and I will say that to share her story, like she said, when the book was finished, it wasn't how we would have wanted it. It's not what Heather and I would have done. There is no doubt that I believe you that Kennedy is around you today. And because she probably orchestrated this, she probably helped whisper in my ear, you know, hey, go up to the Julie's house. Um, there's lots of reasons why. And so we're terrible at marketing Kennedy unless it's to touch someone's life. And that's what we're expert. And so it, you know, when it comes to the monetary side or updating things, people like, you need to hire a managing this. I'm like, no.
Speaker 3:
39:34
Yeah, that's not the purpose. Not The purpose. We're not [inaudible] grainy go.
Speaker 4:
39:39
And so the last thing I would say is that, you know, Aaron, I'm proud of you because, uh, you have the courage to share your story. And when Aaron asked me to speak, it was interesting because she was like, I have somebody international asked you about, I don't know if you'll see us. And she's like, will you be on my podcast? And a cool, of course, yeah I'd do anything for you guys. But she, when she told me it was called concrete and chaos or I'm like, that's so funny because Heather and I speak and we speak to big groups about chaos and we talked, we say enjoy the chaos. So those of you that are in chaos enjoy the chaos. Because I saw that four years before candy died when I had that permanent experience. And I told Heather, enjoyed this, enjoy sucking out, you know, her oxygen tube, enjoy putting her wheelchair because, and that may sound dumb, but I said, because you'll miss it.
Speaker 4:
40:32
Enjoy being up all night with her, enjoy, you know, enjoy the game. You'll miss it. And we do, we missed it. And so we learned that to just have and how to function with two other kids and to a business in a full time job. And Ah, you know what I mean? Just like, how am I going to, and then when it all went silent, when we finally had a moment, we, we missed it. And so my plea to those out there is, you know, the end, this is, do not be afraid to share your story because you never know a life it could change or life it could say. And we've seen that hundreds of times and, and, and so you'll know when to share it. But also if you, if you have a belief in something, some power or God or something else, then pause and listen and you'll be prompted who to share that with. And it will bless, you know, I don't know what happened today and honestly, we're just normal people, but I, I hope that this podcast will help you know, someone, it came from a prompting.
Speaker 2:
41:35
Yeah. So that's how I leave you with, no, I love that. And you know, it's so funny and you're right because I, when you were talking were you and myself and my and my husband Brandon, we were sitting at the kitchen table and you're sharing your story and all of a sudden I realize I'm no longer even listening to what you're saying because all I can hear is ask him to be on the podcast. He needs to be on the podcast. And I'm like, oh my gosh, so I can actually pay attention again. I needed to just ask him and I was, I was totally embarrassed because I'm thinking he's at our home, like he's totally being open and vulnerable and this is such a sweet and tender experience for us personally. And I didn't want it to be misconstrued in any way by my asking, but I just kept thinking somebody else, not just me, not just my husband.
Speaker 2:
42:22
Somebody else needs to hear this message. So I don't know who you are listening right now, whether you're one person, 10 people, a thousand or 10,000 people, but this message was for you. And I felt that in the first conversation that I had with Jason, which is why all of this has come about. My hope and my prayer is that if it was for you, you recognize that and then you take, take the time necessary to take a step back and to really let that sink in and really feel that love of, of God wash over you, knowing that if this was for you, this is his gift to you, this story, Kennedy, Jason, Heather, their strength, their light, their spirit is his gift. A hand reaching out saying, I'm still here. I'm still here. With that, Jason and Heather, thank you guys so much. I really appreciate you taking the time to do this. It's been a true honor.
Speaker 1:
43:23
Thank you for taking the time to connect with me here on the concrete and chaos podcast. If you enjoyed this episode where you please take a moment to labor our view, it's the fuel to my fire and lets me know that my efforts to net change and broaden your perspective of what's possible matter. Thank you so much for your support. If you want more content like this, don't forget to subscribe and connect with me on social media at Aaron e Holey or at Erin [inaudible] dot com have a fantastic day. Get out there and congress and chaos.
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