273: Plot Twist: How Jessica Janzen Turned Family Tragedy into Advocacy, and Found Gratitude in Life’s Hardest Moments

In this moving Plot Twist episode of The Light Watkins Show, Light revisits the pivotal moment that forever changed Jessica Janzen's life. Jessica recounts how a reluctant volunteer experience at her church led her to care for two children with spinal muscular atrophy (SMA)—a rare genetic condition that limits physical abilities but not cognitive sharpness. What started as a Sunday morning act of service became a profound journey of love, gratitude, and transformation.

Years later, Jessica’s world was turned upside down when her second child, Lewiston, was diagnosed with the very condition she had grown to understand through Shawn and Shanea, the siblings she had once cared for. Jessica shares the raw emotions of navigating SMA, from daily caregiving challenges to the deep lessons it taught her about resilience, joy, and gratitude for life’s simplest blessings.

This conversation explores the power of following life’s nudges, the beauty of showing up for others, and how seemingly small actions can lead to profound impact. Jessica also opens up about her relationship with her husband, Ronnie—better known as “Hot Ronnie”—and how love and faith carried them through life’s greatest challenges.

Whether you’re navigating uncertainty, seeking inspiration to embrace gratitude, or looking to connect with your purpose, Jessica’s story will remind you of the power of leaning into discomfort, trusting your instincts, and finding joy in the unexpected.

Tune in for an episode filled with heartfelt lessons and unforgettable insights.

Transcript

JJ: “We get a call and we go in that very same day. And that day, we got admitted and we redid all of the tests, and some of them are pretty painful. They're not very fantastic go through and we redid all those tests. On August 5th, the doctors walked in and handed us papers that said spinal muscular atrophy. I was so naive. I was like, “Okay, okay, not so bad. We got this.” I was like, “Okay.” I'm like fast past Disney. I'm like, because if you're in a wheelchair, you just right to the front, you're just priority. I was like, I'm going to get all the prime parking, say now get the blue little handicap sticker, like beep, beep. Here we come, prime parking. And the doctor could tell that I wasn't getting the severity of this. And she had that piece of paper discussing the different types. I didn't know. After caring for Shawn and Shanea for almost nine years, I didn't know the severity and the different types. It just didn't, I don't know, call me naive blonde, whatever it is. She said to me, she goes, “Jess, this is spinal muscular atrophy. We're waiting for the confirmation from the blood test. But we don't think that Lewiston will make his first birthday and we don't have treatment. There's nothing we can do. Our role here will just be to make them comfortable.”
 
 

[INTRODUCTION] 

 Today, I have another bite sized plot twist podcast episode for you, which is a shorter clip from a past episode where the guest shares the story of that pivotal moment in their life that directed them toward what ultimately became their path and their purpose. Sometimes that plot twist looks like getting fired from a job or getting betrayed by a friend. 

In the case of today's guest, Jessica Janzen, her journey began when she volunteered to help a family care for two children with a rare genetic disorder called spinal muscular atrophy. And what started as pushing a wheelchair around a Sunday school classroom. grew into years of learning about love, gratitude, and the daily realities of caring for children with special needs.

Little did Jessica know that this experience would become her own profound preparation when years later her second child would be diagnosed with the very same condition. 

Let's listen in… 

JJ: So, I'm driving to church with my girlfriend, and I'm so frustrated because I live in Calgary. It's a booming by city, we're in a boom. People are literally making 50 bucks an hour picking their nose, just sitting in a cubicle. So, you're like, anything is possible in the city. This is legit, what happens in Calgary. So, I'm like, I can pick my nose and look good while doing it. How have I not found this amazing career and job? My girlfriend's like, “What do you know you want to do and don't want to do? Let's just start with the pros and cons list.” And the very first thing that I blurted out, I said was, “I know I would never want to work with handicapped kids, because they disgust me.” I don't remember her response or whatever. But then I think I just kept going through the list of here's what I know, here's I'm good at, as one does when you're kind of sorting through things.

LW: And then cut to a week later?

JJ: Week later, I volunteered at the church quite a bit. And my girlfriend was like, “I got a call from somebody like, ‘Hey, we're short in Sunday school. Do you know any friends that have already done their criminal record check and are approved to volunteer in the church?’ Could they come and help in Sunday school?” I was like, “Yeah, for sure. We've got nothing going on a Sunday morning. Happy to help.”

So, we get there. And they're like, “You over there, you over there.” And they're like, “You over there with the five and six-year-old boys.” I was like, “Okay, sounds good.” I'm over there with five and six-year-old boys. And as I walked towards the classroom, I see a little boy, and he's sitting in a wheelchair. His hands are too weak that he's stuck. He can't roll and play. And if anyone's ever seen five and six-year-old boys, they are filled with more energy than a freaking rocket ship. So, they are like circling the room and rounding. And I went straight over to him, and not even remembering this conversation. But I just said, “Hey, can I push you around so we can chase the other kids?” And he said, “Yeah, that'd be great.” And I was chasing the other kids and it was crazy, and I've been chasing him so fast, his wheelchair’s head would fall over, and his neck, was very weak. And he go, “Excuse me. Miss Jess, can you pick up my head. I can't pick it up.” So, I would literally take my hands off his head and get it back straight, and I'd be like, “Okay, I'm driving the wheelchair too fast.” And the rest was history.

At the end of that I felt this nudge, this is probably when I really started paying attention to nudges. This voice was like, “Jess, you got to go tell this family that you’ll help them. That you'll just, whatever it is.” So, I wheeled Shawn to his dad, where he's picking him up from Sunday school. I said, “Hey, I’m Jess. I swear I'm not a criminal. I've got a criminal record check. I'm a super nice person. I just love to help and serve your family.” And their dad was like, “Yeah, okay, amazing. Great.” He's like, “My wife's coming. Can you just wait to meet her?” And I was like, “Sure, I've got nothing else to do.” As his wife walks around the corner, she is also pushing a wheelchair with a little girl who's four years old, whose hands are too weak to push. I introduced myself, say the whole spiel. And she says to me, “How soon can you start?” I was like, “I can come tomorrow.” So, the rest is history, truly from there. The next day I showed up and I nannied for the family. I helped the family. I learned to love those kids and nothing about them disgusts me. I grew so much as a human and I learned so much about myself and gratitude. It was a wild ride to where I'm at today, but it was a pivotal moment in my life of, you can say some really crazy things, but it's also okay to learn from those crazy things.

LW: Okay, so I have a few questions about this moment for you. Question number one, those two children were experiencing, it's called spinal muscular atrophy. So, what does that mean in relationship to the body and the brain and all of that?

JJ: So, spinal muscular atrophy, also referred to as SMA, in short, is a rare genetic disease, and essentially the easiest way that I understand it to be, you can go Google and get a much better medical explanation. But they’re missing a genetic gene that's passed on from both parents. And the gene that they're missing is the gene that's pivotal in telling our nerves to reproduce. So, when nerves die off as they do in every human body, they're being reproduced. But in a body that has decimated, they're not reproducing. Nerves are what communicate to our muscles.

So, you want to like move your leg, like I just cross my legs and cross them. I don't even think about it, I just do that. That's because my nerves are communicating to the muscles of signals to the brain. But when they die off, you can't do that anymore. And then patients and families, members, those living with SMA, they'll start to lose that ability. So, these kids at about 18 months were diagnosed with spinal muscular atrophy, and so they started losing the ability to walk. And then you start losing the ability to use your hands and arms, and it eventually kind of works its way up your body until you can't eat, breathe, swallow. All of those basic human functions. You and I are breathing right now. I'm talking right now. I don’t even have to think about it, I just do it. It's that natural. I can move my arms up and down, side to side, clap, give you a thumbs up. And those simple motions for someone living with SMA, it is a terrible amount of work, and then often, they'll fully lose that ability. That's why Shawn and Shanea were so weak at four and six, that they had already lost the ability to communicate and to be able to use those muscles in their arms to push their wheelchairs.

LW: Is there a certain amount of time that doctors give someone who's experiencing SMA?

JJ: So, Shawn and Shanea, at their diagnosis, which was about 18 months, a year and a half, almost two years old, the doctor said they probably wouldn't make high school. Excitingly enough, Shawn and Shanea have both graduated high school and are in university now and kicking butt. And like literally world changers. They're the coolest humans. I love connecting with them, because they always learn something. They think I'm an absolute Gong Show with a capital G. Just ask them. They're just like, it's never a dull moment when we're together. For others, getting diagnosed at birth, or a few months old, it's usually death before the age of one. And then you'll have people live into their 50s and 60s, they say that there's about four different types. Type one being the most severe. And type four, obviously not being severe. In each type, there's varying levels. There's not like a cookie cutter of like, “Oh, you're type two.” We know some really strong type twos that can like lift up their arms and try to pull a sweater on, and then other type twos that can barely move the joystick on their wheelchair or can't bring a spoon up to their mouth. So, you've got varying degrees of severity.

LW: So, you mentioned that you felt a nudge to go to up to Shawn’s father and volunteer to help. What was that nudge? What does it feel like if you had to articulate their words, saying, “Jess, go up.” Or is it just a feeling, or what is that nudge?

JJ: For me, it's a combination of both. But I feel really blessed. My nudges are usually very audible. I'm with my husband now, to this day, I was like, “Shit, honey, I got a nudge.” He's like, “Oh, shit, here we go again.” It's like, “Buckle up! You got to go do this thing.” And he's like, “Oh, man, what is this going to do?” Usually, if I got a nudge, you better watch out because it's going to happen, come hell or high water, and often they're very crazy. Sometimes I don't always get to see the end result of it. I'll follow the nudge and I just trust it. 

But it's an audible voice, and it's almost like something's tugging at your heart, like pay attention. And that part, I'd be curious. I think that happens for all of us. I think it's just – and you would know. I usually don't stop talking and shut up. Because I'm like, “I want to know this. Tell me about that. What about this?” My pace in which I run my life is like high vibes all the time and I love it. But I also know that I have to be quiet enough or smart enough to listen to that, and I think that is wired inside all of us.

LW: Something I've written about, because I talk about nudges a lot as well, is people will say, “Oh, I don't know what my heart is saying.” Part of me is saying, well responds with, “Be careful, because when your heart doesn't nudge you to do something, it's usually not something that's going to make you more comfortable. It's going to be something that stretches you to some extent.” Would you agree with that?

JJ: I would. Because it's not usually the comfortable stuff. I don't think we need to be nudged to do comfortable stuff. Do you know what I mean? It's like your body already knows. It's the scary uncomfortable, you're not guaranteed a result. That's where the nudges are like, “Hello, pay attention. Go do the thing.” And you're like, “Oh, God, it's scary to want to do it. I don’t know the outcome. What will people think of me?” And that's usually where we got caught up. My whole book was about like, “Yo, pay attention. That's where the freaking joy lies. Every night, respond. It's crazy, but it's also really beautiful.”

LW: Speaking of crazy and stretching ourselves, talk a little bit about a day in the life of helping to care for these two young beautiful souls with SMA.

JJ: Oh, man. I mean, this is where I get choked up. Because I think, you're like, “Brush my teeth. Brush my hair. Go take a piss.” I wake up and you go pee, that's me. And then I brush my teeth. Those are the very first two things that I'll do. And shut off my alarm, right? I don't have to think about that for one second. But the very first time I cared for them, it was like, “Jessica, can you come get me out of bed?” And they had to wait for somebody to come and get them out of bed. They're so weak.

So, it starts with getting them on the toilet, brushing their teeth, but you're doing all of that work for them. The crazy thing is with spinal muscular atrophy is it doesn't affect your cognitive thinking. You're still very with it. They’re some of the smartest people because it's so tuned in. But physically, that's where they would face all of their challenges is not being able to physically do something. So, you get them ready, get them in their wheelchair. They have power chairs, which are incredible. And so, once you're in a power chair, depending on what age you are, you're fairly – I shouldn't use the word fairly. You can be somewhat independent. Again, depending on the severity of spinal muscular atrophy that you're facing. But it's everything from like breakfast, and it's like Shawna and Shanea are 21 and 19, and someone still has to cook their food for them. And then towards the end of dinner, they get tired in like lifting a fork.

I remember purchasing my cutlery. When you go and you get a wedding registry done, you pick it all out. I remember weighing out the different cutlery options and wanting to make sure that my cutlery was light enough that they could use it. Which is crazy, because I don't know a lot of people that you're like – usually, you pick it up and you're like, “Well, this is really weighted. It must be good quality.” And those are things that you don't even think about. So, it's everything from every time they have to go to the bathroom, every time they need their nose wiped, every time they want like their hair. “Hey, can you just” – I'm like, oh quickly, I'll throw out my hair, boom, put it in a pony. You're like, “Okay, good, ready, let's go.” Boom and whatever. They’ll think about those things, but every movement has to be calculated in sorted through. 

Every meal, when you're going to sip water, who's going to be there to take you to the bathroom. And there are some cool surgeries you can get. It’s called a Mitrofanoff surgery where you reroute your bladder through your belly button, then you can self-catheter. But if you don't have that, and the kids didn't have that until they were almost 18. Every time you want to go to the bathroom, every time you want to do something, you're making sure that someone's there to assist you in every step.

My favorite part of caring for them was at bedtime, I would play this crazy dentist lady named Helga or Olga, and then I would play the dentist to them. That would take 45 minutes. And then once we got them into bed in pajamas, all the things, I would get to pick their nose. So, when you probably like blow your nose, but they didn't even have the strength to like really blow their nose. So, I got to go on as a q-tip and pick their boogers, and I just thought it was the best thing ever. And Shawn would roll his eyes because I find great joy in booger picking. It's like, that's the stuff you and I don't even think about. It's like you got something, you just finger up your nose and away you go. And it makes you realize, like now when I look at it, I'm like, “Golly, everything I do is a blessing. To run and jump and skip and play.”

LW: So, when you would leave their house every day, would you feel exhausted? Or would you feel grateful? Or was it a combination of just a lot of different feelings?

JJ: I remember that first time I left their house. I balled. I balled because you think like, fitness and working out. But I'm just like, I didn't even have to think about walking down two steps, and opening my car door and not having the strength to do that. I didn't even have to think about that my legs wouldn't work. And I don't think many of us played through that scenario. I was 22 at the time, something like that. It was the first time that I was like, “Whoa, I'm so damn grateful for my legs. I've been gifted something, such a blessing that I've taken for granted up until this moment.” I think unless you have kind of a life-altering circumstance, I think so many of us live like that. “Oh, whatever. I’ll work out later. Oh, it doesn't matter if I move or whatever it is.” It's like, I don't take those moments for granted.

So, I remember being overwhelmed with I think was a bit of guilt. I think a bit of shame of just like not realizing such simple gifts that I had, and feeling bad for taking them for granted. And then full of joy, because for me, I could have fun of brushing someone's teeth and picking their nose and being like, “Hey, this is small way that I can show up for somebody.” I wasn't doing it for anybody. I was just doing it because I wanted to make those kids smile. I wanted their mom to not be so stressed out, to not feel like she didn't have help. And that's a massive thing that anyone with SMA is navigating, is getting the assistance and the help.

I remember the first time I cared for them overnight. They were up, I think, it was 12 to 14 times. “Can you roll me? I'm too hot. Can you pull up the curtain towards my ears?” I have little kids and they're amazing sleepers. But I know when you're trying to help your kids sleep, it's like, “Oh, getting up again.” But 14 times, their body hurts. They need to roll. You and I are one back and forth, sheets up, sheets down. And I just remember being utterly exhausted after doing it for – I’d looked after their kids for a week. The mom and dad went away for a trip to recharge their batteries. And I remember being like, “They do this every day of their life. There's no break. No tap out.” They get one vacation a week for seven days. I was like, “They're wired different because this is next level.”

LW: How did this experience evolve or influence your idea of success for yourself? Because you're 22 years old. I mean, most women your age, and most people your age are thinking about making a lot of money and being famous or whatever. What were you thinking in terms of success?

JJ: We’re still thinking about these things. I learned that you could show up where you are. So, I started working for this company called Jugo Juice, and I was the Director of Operations and Training. And we were a smoothie company. It’s similar to like a Jamba Juice, or whatever. So, franchise partners buy the location, and I would onboard them and train them, and we had a full-on training facility. And part of what we would do is you train on how to make the items. But part of what I incorporated was like community outreach. And I was like, “You all, we can show up and use this for a difference, like for good.” You’re like seeing, Tim Hortons, that's our coffee shop here in Canada. They have like camp day where it's like, buy a coffee and the money goes towards sending kids who have cancer to camp. I was like, “Okay, this is amazing.”

So, in the training, I started encouraging franchise partners, and I would do – we did, I think, three events before I was no longer able to be interactive in the training, and I kind of took on a bit of a different role. But we would run a community outreach event, invite people into the head office, where we were training, and then we would raise money. The first thing we raise money was for adaptive bikes, for these kids, and to see community and goodness and people who had never met these kids, they weren't there. I just showed him a picture and said, “Hey, we're raising money.” I mean, I had a guy at the end of the day. He was like, “Jess, what are you short for these bikes?” I was like, “I don't know, probably another $1,000. We'll try and hold another fundraiser next month.” And he was like, “I'll just write you a check right now.” 

That was where I could see that, I believe in any situation, big business, big corporation, a small business, a mom-and-pop shop, is that you can give back and show up. Sometimes it'll be to write checks of millions of dollars, and you don't even have to think about it. And other times, it's raising it, dollar by dollar, penny by penny to raise adaptive bikes. And that's where I really saw, I think, in my corporate world of wanting this, like CEO type position and take charge. I wanted to inspire people that even in a corporate job, we could still do good and serve the community, and that was accomplished them, and that's transitioned into what I do now.

LW: That's where you met Hot Ronnie, in Jugo Juice, right?

JJ: That is where I met Hot Ronnie, yup.

LW: So, you will go into great detail about this in your book, how he had a girlfriend and you had this guy from Costa Rica, who you were thinking about dating.

JJ: Carlitos.

LW: Carlitos. And you secretly wanted Hot Ronnie. So, just give us a little synopsis of how all of that played out.

JJ: Here's the shortened version, and this is like the encouraged –

LW: Because here's the other good thing is that, I mean, the other important thing I want to express is that you weren't just – you weren't Mother Teresa. You still wanted to be in a relationship. You still wanted to have a family and all of that, while you were taking care of these other kids.

JJ: Yeah. Well, they knew I could. For me, it was like a no-brainer. It was like I have all this time. I don't have kids on my own. I can, of course, serve and show up. And I'd had that desire, very much so, to have my own kids and a husband and that picket fence, blah, blah, blah.

So, I met Hot Ronnie, and we're working together and I'm like, “Holy shit, this guy's hot.” And then after working with him for a week, I was like, “He's an asshole. He's a jerk. Woof.” He was short, and I was short, and we never were friends. We're at the office late one day and like I said, I stayed at the office late all the time, because I didn't have other things to do. I volunteered in church and I did some other stuff. But I was like, I saw opportunities of where to go. I created my own positions. I told companies what they needed to do, and so I loved working. 

So, it was often that I would be at the office late, it wasn't often that you would ever see Hot Ronnie there. He'd peace out by four. So, we're at the office late one night, and I had asked him, “Hey, are you okay?” And he goes, “No, not really.” I was like, “Okay.” Again, this nudge on my heart to be like, ask him how he's doing. And in that question of me saying, “Hey, are you okay?” He shared about he had this drug overdose with his girlfriend and they got drugged and he kind of made up this BS story. And he was like, “I'm really struggling.” So, what do I do? I go back to my faith and I was like, “Hey, if you want to join me at church, feel free to join.” And often you invite someone to church, they're like, “Hells, no. Churches be crazy.” Because they've grown up and really whacked out churches with crazy rules and really bad taste in their mouth. And like everyone's jerks and two faces. And like, “I don't want a part of that.”

He legit was like, “Yeah, I will be there.” I was like, “Holy crap, this is uncomfortable.” Because I had been turned down more times than I had been, like, accepted the offer. So, he's like, “Oh”, and then that booming voice, the tug on my heart was like, “Ask him to the Good Friday service.” That weekend was Easter weekend, which is a big deal in the Christian faith. So, I was like, “I am not asking the hot guy to church twice in one weekend, that is way too much. He's going to think I'm a Bible thumper.” And the voice boomed at me again, being like, “Ask him. You have to do this.” So uncomfortable. I like muster up the courage, kind of close my eyes. It's almost like I felt like if I close my eyes, like he wouldn't see me. I was like, “Hey, you can come to church with me on Good Friday, if you want.” He goes, “You go twice in one weekend?” So, I explained the whole thing about Easter.

Long story short, he went to church. He was a total mess, struggling with mental health, massive addiction issues, that he had kind of kept under wraps from all of his family and friends for a really long time. He gave his heart to God. We started becoming friends. He just needed someone that was like, chill, didn't drink, party your face off and do drugs, which I would stay at the office late on a Friday night because that's what I did. So, he was just like, “So, you just don't go clubbing on a Friday? You don't go out and drink? And I'm like, “No, why would you do that? It just wasn't my scene.” So, we became friends. But while that was happening, I had started this romantic endeavor in January with this Costa Rican whitewater rafting guide, that I was like, “Okay, this is it. I have to marry him. I'm going to start an adventure company in Costa Rica. That will be how I become the CEO ladder. I'm just going to own my company.” That was the whole thing.

So, long story short, the Costa Rican guy ends up coming. I ended up telling him I'm not love. And Ronnie and I, the more time I spent with him, the more I fell in love with him. Anyone that will meet him to this day. He was a punk for, I'd say a solid 10 years and a little bit of a jerk, but who he is to the core has always been great and he has the most incredible heart. He's servant-hearted and humble and kind and I fell in love with that guy. So, I like confess my unbounding love to him three times, three times. He's like, super great, but we're just friends. And then eventually he caved or I just warmed down from harassing him. I don't know. He can tell his own version of that. But we started dating and then two years later, I was like, “Tick tock, buddy, tick tock. Either we're in it, or you're out of it.” And he was like, “I'm out.” And we broke up for a bit. And then he was like, “Oh, you are kind of the person I want to spend the rest of my life wife.” It's exhausting for him, but here we are.

LW: Wow. So, throughout this whole process, are you still volunteering with Shawn and his sister?

JJ: Yeah, I made Ronnie. I was like, “Ronnie, we're taking the kids to my parents’ farm for an extended long weekend.” He's like, “What?” I'm like, “Shawn and Shanea, engineer, the kids in the wheelchair that I help out every like kind of random.” Obviously, was way less than what I did when I first started seeing them. But I was like, “Hey, their parents need a break, we're going to fly him to Winnipeg, and we'll hang out in my parents’ farm because it's an awesome place to be, and how many people get to go hang out.” So, we flew them to Winnipeg, which is a whole thing because you got wheelchairs and other extra luggage. He did that with me twice, which was really incredible. And we still would show up and take them to movies and out for dinners and just fun stuff.

I had a friend going to pilot school, and Shawn, when he was little wanting to be a fighter pilot. And so, when he was getting his hours in the plane, I asked if he could take us up and we pretend to do a fighter mission. Shawn got really motion sick, and from that moment on, decided he never wanted to be a fighter pilot again. So, I was like, I crushed a dream on his birthday. But it wasn't the same capacity. I think it goes in the seasons of your life. But they've always been a part of it. They were a flower girl and ring bearer at our wedding which is really special.

LW: What did you notice about Hot Ronnie?

JJ: Everyone calls him that and he loves it. I know, everyone does and he likes it. What guy doesn't want to be called hot? 

LW: Right. What did you notice about Hot Ronnie in the way he interacted with them, when you kind of – I'm assuming you enrolled him into it? Did he get to a point where he would – well, did he start off just doing it, because he thought that's what you want him to do? Or was he into it?

JJ: That's a great question. I've never been asked that. I would say, what do they say baptism by fire? Is that the right way to say that expression? I think when you hang out with me, and this is like whether you're married to me, whether you're my friend, you are just like, you become part of the, I call it the Jessica vortex. Once you're in, if you can't keep up and you don't want to do the things, I’m like, you're just going to be left in the dust. So, I think for him that was kind of how it was. It was like, “Hey, we're picking up the kids because we're taking them to a movie and dinner on Friday night.” There wasn't even an option. I respect it. If he was like, “Oh, hey, I have plans or I'm busy or whatever”, it would be in our later years that it became some stuff we had to work through in therapy, for sure, of just like, why did we have our own diagnosis of spinal muscular atrophy.

But he jumped on, and he's always a really good sport. I think he knew how much it meant to me and what I would say is, he's probably uncomfortable as everybody is. You don't want to hurt them. They're really frail. You can break your bones really easily. They're not like hefty solid go people. So, I'd be like, “Okay, just pick them up and put them on the toilet.” I'm just like, “We'll figure it out as we go.” He still like, wanting to be safe and not hurt somebody. So, he was very sensitive, and I would say cautious. But he was right in there, I think partly, because he knew he didn't really have a choice.

LW: You know how you had that feeling of overwhelming gratitude after you first started doing that. Did you share that with him? Would you guys sit in the car after spending time with him and just talking about how grateful he were for everything?

JJ: Yeah. Ronnie's a very physical guy, very healthy, and he had to be after his addiction. That's one of the things of his highest core values is his health. And I think it just even opens your eyes that much more to ensuring that well, you have your health take care of it, and that was just another thing for him to add to his bucket of why it's important to take care of himself.

LW: What's your proposal story?

JJ: So, I gave Ronnie an ultimatum, because we had broken up, and I literally said – because I've done this with Jeff. And I remember we are –

LW: So romantic.

JJ: I know. Right? But I mean, this is the stuff that you think it looks like Hollywood movies, and it's like, that is not how life works out. This is the reality. So, he breaks up with me, and in that, we were working together. I was living with him. He gives me his keys, and he was like, “Move out. I want you out by the end of the night.” Ironically, we just had this conversation, He said to me, “Why didn’t you even try to call me and fight?” And be like, “Hey, can we work through this?” He's like, “You just took my keys and started packing stuff.” He's like, “You know I'm reasonable and I wouldn't listen to you.” And I was like, “Are you kidding me? I slept on a friend's couch for four and a half months. You're telling me this now?”

But we had broken up, and I was so firm. If you want to get back together, know that I'm going to be your person because I don't want to go on and off, on and off. At the end of the day, life is about choices, and we get the power to decide what our choices are going to look like. We can say yes or no in or out up or down. So, I was like, if you're in, be all in. Because my parents, I'd seen them work at it for 42 years and it wasn't just blissful, romantic, no problems. I had seen my grandparents do it for like – it's a choice to show up and be with your partner and do the hard work.

So, when he came back to me, his truck was parked at the Jugo parking lot where we worked, and I left my car there because I'd found out for a moment that he was supposed to come with, but we had broken up. So, he didn't come. And he had this incredible letter I carried in my wallet to this day just about saying, “Hey, like you're the person.” And I feel like I'm going to fall short, because you haven't seen expectations, which is like if you've met me, yes, very true. But he also said, “I'll spend the rest of my life doing everything I can to make those expectations and to give you a life that you dream up because I have crazy big dreams.” I knew at that moment that like he was all in, and it was the security and the reassurance that I needed that no matter what storm we'd face, that we were in it together. He didn't have a ring and he said that he's like, “I don't have a ring, but I'm going to take you to New York.” And I had this dream of wanting to go to New York or be a CEO, and I'd never been to the city. And so, he booked this trip and took care of all of the arrangements and it was beyond perfection.

When we were in New York on the second night there, he took me out for a beautiful dinner, and then we walked to the carriages at Central Park and we get into the carriage and he climbs in, I climb in and you're coughing along and I'm like, “Holy! This is it!” Your heart's beating on your chest and we literally were in there for two minutes. Ronnie hands the driver of the carriage $200 USD. I get out and I'm like, “Did you give the guy $200 USD?” He was so nervous, he couldn't calculate the bills and so he just like – and you could see like the guy in the carriage just like, “Yeah, take off before the idiot tourists realized how much money they gave him.” And then he whips down his pants and pees on a tree in New York and I'm yelling at him. I'm like, “You're not peeing on a tree in Central Park.” And then he proposed over the Bow Bridge. There was nobody around. It was like lightly misting and in typical Jessica Janzen fashion, I try to rush everything. I was like, “Oh, yeah. Oh, yeah.” I wouldn't even let him say what he was trying to say. He proposes. And then the next thing out of my mouth was, “Did you get me the ring I wanted?” I mean, kind of hilarious and crazy. And he's like, “Did you legit just say that?” I was like, “Well, did you get that ring I wanted?” It's not even like that outrageous of a ring. I'm wearing the bands right now. It's just too simple bands and then this other diamond that he'd gotten me, but it was amazing and more than I could have asked for.

LW: Cut to, you all are having your first child, Swayze.

J: Swayze. We have Swayze Grace. I was told by doctors that couldn't have kids, celiac, endometriosis, all these crazy stomach issues. I was heavier. I didn't have a regular period. My cycle was messed up. I was in constant pain. I've done a lot of work in my health. I got mono and hepatitis and a liver infection when I was in high school. And it took me, I would say, 8 to 10 years to recover from that properly. Now, I take really good care of my health because I know how quickly it can fade.

So, we weren't sure what it would look like, but we got pregnant with Swayze on the first go, it was crazy. She came and then four months after she was born, I peed on the stick again. And I was like, “Oh my gosh, we're doing this again.” And Ronnie had started new business. I wasn't really working. It was wild. That wasn't kind of what we were preparing for. So, it came fast and furious. Literally, 13 months later, almost to the date, our second son was born Lewiston and we also have a third little guy Hollis, who was born in 2019.

LW: When Lewiston was born, did you have any feelings or anything about those that made him stand out from your experience with Swayze?

JJ: None. His birth was easier. It was like, I literally went into the hospital and this is legit, how the story goes down. I walk in and like, “Hey, me again.” You know, you check in. I was like, “I was here 13 months ago. Let's get this done.” And they're like, “Okay, we'll see. We'll triage you.” I was like, “I'm for sure dilated because I waited a really long time.” And they awkwardly stick their hand up your woo-hoo, and they like look off into the distance. You've probably, I don't know if you've had to deal with this with any of your family, but they'll measure you and they're checking to see how dilated you are. And they're like, “Oh, wow. You're six centimeters dilated, which is pretty freaking far along.” I was like, “Yeah, let's have this baby.” I get into the room and I'm like, “Alright, team, here's how it's going down. I'm like break my water, going to go in the shower, and when I say push, it means I got to push. Because when I start pushing this baby's coming out.” And they’re like, “Okay.” I was like, “I know you've got a scheduled C section there this morning doc, but I'm going to happen before the scheduled C section. So, buckle up. Let's get this done before you go do that.”

They’re kind of laughing but taking me seriously because it's your second baby. They broke my water and 45 minutes later, I was like, “I got to push.” And it was three pushes and Lewiston was out. Literally, they rushed me out of the delivery room. You don't stay in the room in Canada. You move from the room to a different unit. Anyways, it's the whole thing, but I delivered him at 8:55 and I was home eating gluten-free cheese pizza and watching playoff hockey at 6”30 at night. It was just like, “Okay, that wasn't so bad.” I'm sitting on a padsicle and I'm in a little bit of pain but I just had a baby. This is great.” Family was coming over, like there was no resting mother's bliss. It was like the playoffs were on and it was Ronnie's team and we're always hosting. So, come on over. Nothing would have alerted me for what we were about to embark on.

LW: Maybe I'm getting this wrong, but you mentioned the chiropractor first detected that something was off. So, why were you taking your son to a chiropractor?

JJ: So, Lewiston had really bad colic. A colicky baby is literally like crying, screaming all the time, just a nightmare. You'd have to constantly be moving and I was really the only person that could hold or soothe them. Most babies, you’re like, “Oh, you're so content.” You could even see he was in pain. So, I tried everything and a bunch of friends that we just hung out with. She suggested my kids had colic, take them to this chiropractor. I'm in Winnipeg, at my parents’ farm, we’re holidaying there. So, this is where my girlfriend said. She's like, “My kids won.” I was like, “Great recommendation.” And when I put him down on the little bed and I unzipped his sleeper, his skin was modeled, but he was labored breathing. But he’s a newborn. He's two months old at the time. They're just weird alien-like creatures anyways, like they make weird noises. They make weird sounds. They’re pooping four times a day. You don't know which way is up. I'm sleep-deprived. And she didn't even treat him. She just said, “I want you to take him to emergency. Have him looked at by a doctor.” And I thought it was really weird, again, still not panicking.

On the way, I stopped for gluten-free sandwich. I stopped for a hot Americano. I call my mom. I don't even call Ronnie at this point because I'm like, “I don't want to – he's a little bit of a worrywart. I don't want to alarm him.” I just remember being so perplexed, like this kid kind of looks fine, like what would be the issue? I literally went from the chiro to the sandwich shop and the hot coffee, to emerge. And into emerge, in Canada like unless you're dying, you typically wait quite a bit of time. And blessed to be, I was in a private room ready to go literally from that private room, a nurse was like, “We'd like to just move you to a different area.” 

I remember putting Lewiston back in the stroller, like strolling over thinking, “Oh man, I haven't even had a sip of my coffee yet.” This is really fast, and looking up and just seeing the words resuscitation room. And that's when everything for me flipped, that I was like, “Oh, this is serious.” I was able, after we got our diagnosis with Lewiston, I was able to thank to that chiro and just say thank you. You probably saved my son's life, because how do you fall asleep a certain way on his head. He probably would have cut off airway and not had the strength to adjust himself like most babies would. So, it was a blessing to be where we were at the time.

LW: So, what happened next, once you went into the respiration room? When did they give you the diagnosis?

JJ: So, a scene at a Grey's Anatomy, people are running in, shouting numbers, they've got lights on, they're calling, we need a CT, an MRI. We want an EKG and ECG. And I'm like, what's happening? So, the teams, counting and checking on his vitals every 30 seconds, and we're moving to an MRI, over to get a CT. And I call Ronnie, he had flown back to Calgary because he had to go back to work, and he got on the first flight that he could. We spent six days in Winnipeg, at their children's hospital with no answers. You meet with geneticists and vitamin specialists and geneticists and there are neurologists and there are cardiologists, and they're like, “Oh, maybe bacterial infection. It could be a vitamin deficiency. We're not seeing anything.”

There, somehow, I decided to call Karen and I said, “Is it really hard to test for spinal muscular atrophy?” She said, “No, it's just a simple blood test.” So, we requested it to be done in Winnipeg, and they were like, “Oh, we really don't think it is SMA, so we don't want to do it. We don't have a lab here. So, you have to send it off.” And we're both like, “Do what you have to do. If you need to charge my credit card, charge my credit card. Just get the test done.” Because the doctor, the neurologist said to us, “I'm 99% sure it is not spinal muscular atrophy.” We high-fived. We’re like, “Oh, dodged a bullet. Hopefully, he's just a little slower or doesn't have the same muscle tone.” And they drew the bloodwork. It never got sent off from Winnipeg. We can fly back to Calgary after we get discharged in Winnipeg, and we just didn't have peace in our heart that we didn't have an answer.

So, we went to go see our doctor, who the children's hospital I asked for a file to get transferred from Winnipeg to Calgary. They transferred the file. We get a call and we go in that very same day. And that day, we got admitted and we redid all of the tests, and some of them are pretty painful. They're not very fantastic go through and we redid all those tests. On August 5th, the doctors walked in and handed us papers that said spinal muscular atrophy. I was so naive. I was like, “Okay, okay, not so bad. We got this.” I was like, “Okay.” I'm like fast past Disney. I'm like, because if you're in a wheelchair, you just right to the front, you're just priority. 

I was like, I'm going to get all the prime parking, say now get the blue little handicap sticker, like beep, beep. Here we come, prime parking. And the doctor could tell that I wasn't getting the severity of this. And she had that piece of paper discussing the different types. I didn't know. After caring for Shawn and Shanea for almost nine years, I didn't know the severity and the different types. It just didn't, I don't know, call me naive blonde, whatever it is. She said to me, she goes, “Jess, this is spinal muscular atrophy. We're waiting for the confirmation from the blood test. But we don't think that Lewiston will make his first birthday and we don't have treatment. There's nothing we can do. Our role here will just be to make them comfortable.” And those words, when someone says, there's nothing you can do, like that, for me, there's always something you can do. So, that hit me really hard.

[END]

 If you'd like to hear how the rest of Jessica's story unfolds, continue with episode 120 at around the hour mark, and be sure to follow Jessica on Instagram @thejessicajanzen, J A N Z E N.

And if you enjoyed this conversation, check out episode 152 with Ray Singleton, whose life changed dramatically when his wife's brain cancer returned leading him to discover strength he never knew he had as her caregiver. 

And if you know of someone else who's had an incredible plot twist in their life and they're out there making the world a better place and leaving people feeling inspired, please send me your guest suggestions. My email is light@lightwatkins.com. Also, please take a few seconds to rate and review the show. And I'll see you Wednesday with the next long form conversation about an ordinary person who's out there in the world doing extraordinary things to leave the world, a better place. And until then, keep trusting your intuition, keep following your heart and keep saying yes to the uncomfortable moments that stretch you. And if no one's told you recently that they believe in you, I believe in you. Thank you and have a fantastic day