When Your World Stops: Insights from a Congenital Heart Parent and Advocate

Ever caught yourself in a moment that you wish you could capture perfectly, sharing the emotions and impact it had on you with others? This week, we had the pleasure of sitting down with Jen, a congenital heart parent and advocate, who shared how digital storytelling is a compelling way to encapsulate such moments, especially in the world of pediatric healthcare. Jennifer created 'Day One', a poignant digital story of her son's  CHD diagnosis.

For Jennifer her exploration into  digital storytelling didn't stop at capturing moments, she began to recognize the therapeutic impact of digital storytelling, using it as a tool for healing and advocacy. The beauty of digital storytelling lies in the creation process - it's about finding the essence of a story, weaving it together with captivating audio-visual elements, and setting the mood with the perfect score. 'Day One' has since served as a beacon of comfort for families in hospital settings dealing with similar experiences.

Our conversation with Jennifer also threw light on the potential of digital stories as a platform for connection. Backed by her vision of fostering a community of shared experiences, Jennifer shared her hopes to establish a digital story library based on the stories in her book, When Your World Stops; Finding Hope in Your Child's Medical Journey.  This episode offers a glimpse into the profound impact of digital storytelling, not only as an effective medium of self-expression but also as a tool for fostering empathy and understanding in the realm of health and wellness. Tune in to listen to Jennifer's experience and discover how digital storytelling can make a difference in your own life.

About Our Guest
Jennifer Siran lives in Manitoba, Canada, with her husband and three children. For over a decade, she worked with marginalized youth in Winnipeg’s Inner City, learning the power of story when overcoming hardship. Writing has been a tool that she has used to process many complex emotions and all that life brings. After spending the last 12 years raising an amazing heart hero and navigating some major setbacks, she took time during Covid to write her book—a project to support fellow heart families in a unique way. Their family continues to navigate their son’s chronic illness in the midst of all the amazing things that childhood contains. 

Website: jennifersiran.com

Want to hear more from Jennifer? Watch the parent education session she facilitated for Children's Heart Network of BC Society here.

About Leading Through Stories
Everyone has a story to tell—and what we do with that story can create lasting impact. Every episode, Leading Through Stories, helps unravel the how and why of digital storytelling with host Kristy Wolfe.

Life is made up of meaningful moments—which ones do you want to share?

This podcast is presented by Common Language DST, digital storytelling facilitation training for health and wellness changemakers.

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Transcript

Jennifer Siran: 0:00

Day one is about that moment when everything kind of shifts, when you've just been given that diagnosis. For some, that's in the beginning of their journey with a child's chronic health. Sometimes that is along the road, later on when a new problem comes up. And when that moment happens, when you get that diagnosis, when you know what's going on, it's really scary and it's really overwhelming. And so I thought that day one made an excellent start for a digital story.

Kristy Wolfe: 0:29

Welcome to Leading Through Stories, a podcast that explores the how and why of digital storytelling. My name is Kristy Wolfe, and each episode I connect with storytellers or Common Language Digital Storytelling facilitators to learn more about the health and wellness stories they are creating and sharing. Life is made up of meaningful moments. Which ones do you want to share? Hi, Jen, nice to have you on here. Will you please introduce yourself? Just a quick introduction of who you are, and then we'll jump into the story that you told with me.

Jennifer Siran: 1:01

I am a mom of three kids. My middle one was born with some heart complications and I live and work in Manitoba right now. Advocacy has always been a huge passion of mine and something that kind of has followed me through this string of life since I was a teenager.

Kristy Wolfe: 1:17

And all that lived experience? Hey, Absolutely. We started working together and we created a digital story for a boost up pitch competition with the Western Canadian Children's Heart Network. Can you please tell listeners a little bit about what the moment was in your story, why you created that?

Jennifer Siran: 1:34

story. I had written a book in the midst of COVID about the different things that we go through as parents when we're navigating our child's chronic health, and so this book project had been an important passion project of mine. It was a bit scary to kind of know what to do with it, and I happened upon an online virtual conference that were very popular back during the COVID years. Remember that, yeah, and you were the speaker, christy, and you were sharing about digital stories, and, as I heard you share about the power of digital stories, there was just something that really resonated with me, and as you were talking, I already sent you a message to say that I wanted to connect and talk, and so that was kind of the beginning of what ended up. We heard about the boost up competition and decided to kind of team up to see what my ideas and your ideas could bring together, and that was kind of the origin of that first digital story for myself.

Kristy Wolfe: 2:27

Well, and I think it's interesting because we have both we're both congenital heart parents. That's how we came together. So, although digital storytelling was like almost the avenue for it, you had done writing. I had really focused on photography as a way to process, and I think digital storytelling is just that way of bringing it all together. Can you tell people about your digital story? It's called Day One. It's the first chapter of your book when your world stops finding hope in your child's medical journey. Can you explain to people what that digital story is about?

Jennifer Siran: 2:58

Day One is about that moment when everything kind of shifts, when you've just been given that diagnosis. For some, that's in the beginning of their journey with a child's chronic health. Sometimes that is along the road, later on when a new problem comes up. And when that moment happens, when you get that diagnosis, when you know what's going on, it's really scary and it's really overwhelming. And so I thought that Day One made an excellent start for a digital story for myself, because it was kind of the gateway into that journey and I wanted people who are in that beginning stage of it, I wanted them to know that they weren't alone, and so I thought that a digital story worked really well for personalizing that as well as giving room for people to put themselves into the story, realizing that they aren't alone.

Kristy Wolfe: 3:45

So after Jen and I first met well, we didn't even meet, we were virtual, everything was virtual. But after we first connected, you had sent me a copy of your book and as I was reading it I was so excited because every chapter is a short little story. I know that in my copy of the book I have like starred probably three quarters of the chapters because I was like this would be a great one and this would be a great one. And so our original pitch was that we would create this digital story with the hopes of getting funding to create more stories. That didn't come to pass, but some other really cool things have happened. Can you tell me about a couple of things that have happened for you since then?

Jennifer Siran: 4:25

I've been really excited to see it actually spread into hospital situations to be passed out to parents. When I wrote the book, that was one of my measures of success. It was that it would actually be a practical, helpful tool for parents. There's lots of supports within hospital structure from your medical teams, but sometimes what's lacking is that personal touch of someone who has gone through the journey as well, who understands what that is hard, because to have empathy from a medical professional is different than a fellow parent.

Kristy Wolfe: 4:53

During the Boost Up pitch competition, they had set aside some money for someone in the audience to get to pay it forward. The person that won actually paid it forward to you after hearing the pitch that we did together. Can you explain what happened with that?

Jennifer Siran: 5:08

Yeah, it was a few months after the Boost Up competition. I was still a little disappointed because I had so much vision for putting the rest of the digital stories together. And I got an email from somebody from Saskatchewan who had gotten this and she'd wanted to use it for their champs camp in Saskatchewan to give to families there. So I was able to connect with her and get a whole pile of books out to them in order to put them into the hands of families at the champs camp.

Kristy Wolfe: 5:32

And I should also mention that in the show notes for this episode will be the link to Jen's digital story, day one, as well as the link to purchase her book or have a look at her book. You can find it both on Western Canadian Children's Heart Network as well as Children's Heart Network, which is the BC parent organization. Is that correct? That's correct. So a couple of different places that you can find out a bit more about what Jen has done. Now, Jen, can you take us back a little bit to the process of creating a digital story? Put on your thinking cap, because this was a little while ago, but I'm going to re-describe that.

Kristy Wolfe: 6:05

When you co-create a digital story with a facilitator, step one is finding the story, figuring out what meaningful moment you really want to focus on. Step two is writing the story itself. Step three is that crafting piece about recording the audio, choosing images whether they're personal photographs or video clips, whether that's stock photography and then also that piece about the composition of the video, so how quickly the pictures move, if there are well, there are always transitions, not if there's transitions panning, zooming, changing the way a still image looks into more of that movie theme, and then choosing music to fit behind it. That kind of fits the theme of the story. What was that?

Jennifer Siran: 6:49

process, like for you. It was surprising. I'm a person that I often will process things very deeply and I thought I had processings before I wrote my book. That took me to a whole other level of processing our experiences, and so I thought I had gotten to the depth of the processing that I needed to do, and when we started the digital storytelling the whole process of trying to find a photo to match a feeling or an emotion or to paint the picture of what you've gone through, as well as for the purpose of this digital story it wasn't just about me. I wanted to make sure that those who watch it can put themselves into the story, so also then paying attention to more generic photos that still connect with my story, and that whole process was very emotionally draining, but also very helpful in healing. At the same time, it was very unique.

Kristy Wolfe: 7:41

Well, it's interesting because so episode one of this season was with Mike Lang, and it was focused on storyteller well-being, and that idea that facilitators always need to have in their heads is what I'm asking them enhancing or detracting from storyteller well-being, because that's kind of the number one priority in digital storytelling that we're really thinking about how our storyteller is doing. Is this the right time to tell a story? Is this the story that they need to focus on? And I knew that you had done a lot of pretty work to this, but it is still an emotional process, and that is part of when you think about step four, which is sharing the story. One of the things that I love about it is that you can share a story without retelling it. So you've done the work in the process of creating the digital story and then, when you're sharing it, you're not as tied to telling the story let's say, for example, in front of an audience. That emotion is a little less when you're watching the story that you've spent so much time creating, and that's something that I think is really helpful.

Kristy Wolfe: 8:42

When I went to the World Congress of Pediatric Cardiology and Cardiac Surgery, I wrote you and I said I'd really love to share your story in this session.

Kristy Wolfe: 8:49

I think it gives a different perspective because I had shared my own story with some of that audience before and so we had your story in there.

Kristy Wolfe: 8:57

I talked about the fact that conversation and discussion around digital storytelling is really important. So when someone is sharing their story whether that's in a small group, maybe just a family, or in front of a larger audience that we always make space to talk about what resonated for you in the story. We actually stopped. We had everybody turn to each other talk about what resonated for them, and I know one of the things that came up was in your story you talk about not being able to feed your son one more time before he gets rushed off into the air ambulance. That was something that stood out. There's quite a few nurses in there and that was one that really stood out for some of those people as they were chatting with me about the story, just that they hadn't thought about it that way and that not always does information get described to parents in that situation but like nope, sorry, you can't feed them, you have no idea why, and so the language that people use I think that part right there really impacted people.

Jennifer Siran: 9:57

That piece in my digital story was hard for me to record because every time, even talking about it now, every time I come to that moment, it was really pivotal for me as a mother, just realizing the situation was as serious as it was, that I had my day planned and that was like the big moment where I realized my day was no longer my own, that there was other things that needed to happen for sake of my son and for his life, and that was a scary and humbling moment as well, as I kind of felt robbed a little bit within that moment. It was a shifting in my motherhood. I had to mother differently in that second and that second forward.

Kristy Wolfe: 10:38

We were in a different sort of state yeah, and I mean you talk about in your digital story control. That's the thing that you can control, the piece about feeding, and you and I have had a lot of conversation about this. This was something that I also felt really deeply. And what's interesting is, at the World Congress this was the first year they had a neurodevelopmental tract and there was a speech language pathologist speaking specifically about feeding kids, and what she was talking about really made me come back. It wasn't in the session where I shared your story.

Kristy Wolfe: 11:08

I came, I kept coming back to your story about that part over and over the part that I shared. That really resonated with me as I watched it again and this is like a year and a half after we created it. I mean, I've watched it a lot of times, but that particular time, as I'm watching in front of the audience and this has hit me before is you have a part in your story where you're talking about the medical jargon raining down on someone and it's got a woman's picture, her face, and we use stock photography for that one and then we had words come up over the screen as you're saying it. That one still gets me, because when you're on day one, I mean even 10 years in there's days that I'm like what are you saying to me?

Kristy Wolfe: 11:47

I am not comprehending this, so that one was the one that I brought up in front of that audience to say that this is what really stood out to me how we talk about this and how it's a normal part of a cardiologist's life to talk about these things. It's not normal for us, as parents, to hear about it. So I think that was really impactful as well.

Jennifer Siran: 12:05

Yeah, I agree. It is so overwhelming when you're in the beginning of it and none of the words make any sense and you know, like a couple of years in heck, probably a few weeks in I could give you definitions for all of those terms. It's amazing how quick your learning curve can be when that's important to you. Each parent will deal with that differently. Some don't care to learn the terms and they're just on the bedside. Others that helps them. So each parent processes that a bit different. But for me I sucked in information and that was part of what I could control to try to learn the most about my son and to know how to talk to nurses and doctors about what's going on. And that serves me well even today. You know, over a decade later from the beginning of this journey, that I can talk to when we've had medical emergencies that have come up and I'm doing intake. I get taken seriously very, very quickly because I'm using those medical terminologies but in the beginning it is so hard to. It's their weighty, they're heavy.

Kristy Wolfe: 13:04

But I think that's a key too. Like your story is still positive, you're still sharing hope. It's not an easy journey, but that message that you can do this is something that I think, especially in day one and those early days of any kind of diagnosis or when you're trying to figure out a diagnosis, that that really is the case, you can do this, and there's going to be really hard days, but passing on that message that You've got this Okay. Jen, you know that I've shared your digital story. We shared it together during a virtual screening last year in February. But how have you shared your digital story, or have you?

Jennifer Siran: 13:41

I have found it so much harder to personally share my story than to have it shared in those public arenas where I don't know the people who are hearing them.

Jennifer Siran: 13:48

So it had been my hope to like share it right away with all the friends and family who have been on the journey with us.

Jennifer Siran: 13:54

But I also was cautious that I didn't want them to think that I was making it all about us or trying to showcase my kid and his medical issues or those sorts of things, so like that whole pride piece that I kind of wrestled with of what that would look like to other people if I shared the story. So it has mostly been used talking to parents. I did a talk with the BC Children's Heart Network and I used my digital story within there to share a little bit with them. It's on my website and aside from that I haven't shared it far and wide. I sent it to a few close friends. It's still something that I'm working through of how it feels like such a precious, delicate little thing I created that I am scared to put it out in the world and it either be mistreated or people not understand the heart behind it, and so sometimes that stops me from perhaps getting it as far out as what I would hope to.

Kristy Wolfe: 14:43

That's a really good point and something that I find a lot of people say and, quite honestly, I have those same feelings about my own stories. I find it very easy and in the situation where I am speaking and the group is there, I'm okay with sharing my digital stories. I've gotten a bit better about that. I do find it helpful for me to facilitate a conversation about someone else's story, because I think it's really important that you, as a storyteller, get to hear what resonated for people. Here in the Bo Valley, which is where I live in Canmore, I put on a digital story screening in person. We bring three digital storytellers who have created a story and after each story we leave 15 minutes of time for conversation around the story. First we turn to our people sitting around us and have a conversation and then we bring it back so the storyteller can hear and I think that is something that you had in the virtual screening but that you probably haven't really had at other times and I think that is really important for people who are telling the story to hear feedback about it.

Kristy Wolfe: 15:45

When you do share it again, I would always suggest making space for conversation. It's not super comfortable when it's your own story. It does feel like asking for people to tell you good things about it, but that's not what it's about. It is literally watching connections happen for different people and you never know how far that story resonates. Jen told me just before we started recording that after I shared her digital story at that conference, two of her books sold. That tells me that people were impacted by that story. They immediately went and bought that book, so the link to your book will be in there as well, as well as we mentioned the digital story so people can see it, because it is a really powerful story about what that feeling is like, being able to share it not just with other congenital heart families, but other kids with other medical diagnosis, but also healthcare providers, so they can see what it does feel like to have those first feelings when your world is totally shaken.

Jennifer Siran: 16:43

When I was writing my book and I was looking for different people to write in the acknowledgments in the beginning of my book I approached one of the main cardiac surgeons that worked with us very closely when our son had a surgery at five years old and had him read the book.

Jennifer Siran: 16:56

It was fascinating to me and humbling to even see his response, for him, as a healthcare provider, would often work with families on the other side.

Jennifer Siran: 17:05

His job in particular worked a lot with families who were dealing with some really scary moments within that journey as well, and doesn't always have the ability to follow up with families after the fact.

Jennifer Siran: 17:15

To see what he put together for me and I had to actually chop it down considerably because it was over a page long, which was amazing, but he had talked a lot about there too, of just being able to see the perspective from the family side that you don't often get to see or understand as well when you're working on it. From the medical side, we all have our own perspectives, but it's so much more powerful and we have such increased level of care for our loved ones when we can hear each other. So for medical professionals to hear what it's like from the side of the parent, helps them do their job better, and for even me as a parent, I want to know how the stresses of the job affect the healthcare providers. What are some of the things that they're dealing with? That gives me greater understanding for them when I'm conversing with them as well.

Kristy Wolfe: 18:04

I think that's a really important point. I know that some of the people that I've worked with when they've created a digital story, it was personal, it wasn't going anywhere, but within their family they didn't put it out to the public. You did something different with your story. Can you picture or can you imagine anything else you might do with your story moving forward?

Jennifer Siran: 18:22

I have a few dreams and ideas. It's waiting for time and capacity to make them all happen. But I would love to develop more of a series of stories. This would be the precursor to a bunch of other stories that would lay out little helpful steps for parents along the way and using this particular story that would. Then it would be repackaged differently for me too, of kind of where I would go to bring that into hands that could make use of it.

Kristy Wolfe: 18:47

I love that because that was what our pitch was about. It was about getting funding for more of the stories to be told in a series, and I think that idea of having a digital story library that you can show for different parents would be something that would be really useful for Western Canadian Children's Heart Network. I'll throw it out there because I think that it offers a space for connection. It offers a space for conversation and, as you said, providers, but also patients and families and seeing those different sides. So, jen, I wholeheartedly support you. Let's put it out there. We would love to have funding to keep working on that project. Absolutely, I think that's something that we could definitely keep working on.

Kristy Wolfe: 19:30

One of the things about digital storytelling is often when I work with an organization. There will be an organization that wants the stories and then they will look for a funder to fund the stories and then, once we have the funding, we also then need to look for volunteers who will then do the stories. So there's like quite a few pieces that play into it. Ideally, I mean, you are the volunteer that would do multiple stories. We have that. We have organizations that we know. Now we just need a funder.

Jennifer Siran: 19:58

So let us know.

Kristy Wolfe: 20:01

All right, Jen, you have your digital story day one. Is there anything else you would like to do with that story or with digital storytelling in general?

Jennifer Siran: 20:10

I really enjoy the process of putting together the digital story. Christy, you do a fantastic job of walking us through that whole process and by the end I'm like man. I really want to do this for myself. I would love to take training in order to do my own digital stories.

Kristy Wolfe: 20:25

Well, that's a really good point, jen, because you have the skills.

Kristy Wolfe: 20:29

So sometimes I'm the editor, they're the director, but when we were working on it, you were really taking on a big part of that editing role as well and you had a vision of what you wanted your story to look like, and so I would really recommend that you do the level one training, because all of those digital stories that are ready to go, with all of those chapters that you've already written, you would be able to do that yourself.

Kristy Wolfe: 20:51

So just to give information for everyone here, the level one training it runs in the fall. It usually runs about twice a year with common language digital storytelling, and when you do the level one training you're kind of introduced to digital storytelling. You create a story for yourself. Within that training you learn more about the philosophy behind it, the ethics, the storyteller, wellbeing, the process, how to create all of that, and then you also work with a volunteer to create a story. So you're actually creating two stories within that training and I think, jen, you would honestly love it. It would be just one more way to kind of get your story out there.

Jennifer Siran: 21:27

I think it's important to continue, as we age, to do exciting, scary things sometimes and learn new tricks and trades, and so I would encourage even anyone listening who maybe has never done a digital story and like I, don't think I could ever do that it's fun to learn new things, and it was really fun to learn how to do a digital story. It's such a unique little piece.

Kristy Wolfe: 21:46

It's funny because when I found out about Mike Lang and about common language, digital storytelling, I was like well, I already teach people about photography and like maybe this would be helpful, and I had no idea how much I would love this process. I have pretty much stopped photography and I focused on digital storytelling. So, jen, I just want to say thank you for coming on, thank you for trying this out with me. This is only episode two. You're the first storyteller that's actually having this conversation Drinking the Kool-Aid over here. I hope only the best for you and your family, but also that we get those books into the hands of more people.

Jennifer Siran: 22:22

Well, thank you, Christy. It's such an honor to have this opportunity to do this as well, and I'm so thankful for people like you who are out there and are talking at conferences and providing space for conversation. It's so powerful and so needed even more so now. So thank you.

Kristy Wolfe: 22:36

You're welcome, and you know what that makes me actually think about the fact that what we did together for BoostUp led to a workshop that did get funded, with adults with congenital heart disease, and coming up on October 17th it's a virtual screening and so, jen, I hope you can come. I would love to have your perspective on that, because I'm pretty sure I showed your story to those guys when we were talking about digital stories and what that was like. So being able to connect people together and see the different sides of digital storytelling is one of my favorite things. I'd love to, as people do, watch your digital story or have a look at your book. Please respond to leading through stories and I will send those messages on. We've talked about how important it is to kind of hear what resonated and have that conversation around it. So absolutely all of the details will be at the end of the podcast as well as in the show notes, and I will pass on to Jen anything that stood out for you in her digital story, because I do want you to hear those things.

Kristy Wolfe: 23:31

Jen, everyone has a story to tell. We would love to hear from you. We always include a link to the stories we're talking about in the episode show notes. Please let us know what resonated for you in today's episode. Your comments will be passed on to the storyteller. You can email us at LTS podcast 2023 at gmailcom, or find us on Instagram at leading through stories. Leading through stories is sponsored by Common Language Digital Storytelling. Facilitate a training for health and wellness change makers. Don't miss the next episode. Subscribe to Leading Through Stories on your favorite podcast platform.