Narrator: Welcome to Simply Unbreakable with Kristy Dickinson and Brenda Agnew, a podcast from Chronically Simple. Simply Unbreakable is about telling stories, learning from each other and forging new ways to navigate the healthcare system together.

Kristy D: Hi everybody. Welcome back to another amazing episode of Simply Unbreakable with, you know, my dearest friend Brenda Agnew and myself Kristy Dickinson as your co-host. And today we are honoured and excited and just so giddy to sit with our dear friend Kristy Wolfe –

Brenda: We’re going to talk a lot about some of the projects you’ve done in your life, but you know, as medical mammas and Kristy, you know, I mean a lot of this is kind of flying a little bit by the seat of our pants and, you know, figuring out things as they go. Because there certainly is not a manual that comes, not with parenting in general, but certainly not with parenting a medical, a child that has medical challenges and things going on. So, I kind of feel like, you know, this, whatever this void, this unpreparedness, this is, you know, this has been my life. –

Kristy D: If anyone can rise to it, it is these ladies on –

Brenda: Yeah.

Kristy D: – this podcast today, so.

Kristy W: Well, I was just being, as you were saying that, how I, like that’s how I think about a photography session, I’m not going in with like this is the photo that I need to get out of this. My style of photography as a storytelling photographer is like, hey I’m going to come hang out with you, I’m going to take some pictures and you’re going to love some of them, and I’m going to love some them and not all of them and that’s OK and just see where it takes us. So –

Brenda: Yeah.

Kristy W: – I can completely relate to this.

Brenda: And those are usually the best ones, right, I mean this is the same thing I have when I talk to my friends about not wanting to go somewhere, like I have a teacher that says, I’m sorry I’m late, I didn’t want to come. And so, I, you know, I usually have this piece where I’m like, I don’t want to go, and nah, nah, nah, those are the nice, I have the best time. I have the best time when I have zero expectations going in, when I actually think it’s going to be, you know, a negative situation, because again, you’re managing your expectations and I think that’s a huge piece. And again, that speaks to exactly what you said about photography, you know, my favourite photo, for the first few years I tried to make my photos so perfect of my kids, which is nearly impossible with a child that can’t sit upright.

And my, I would say by the third Christmas, you know, the Christmas card that was going out, was you know, Maclain toppled over on his side, Chase holding a soccer ball, I mean that’s what went out and those are my favourite ones and that’s life. And I think, you know, if I was, you know, someone who had had you come in and do those photographs, you know there might be things at the time I would look at and think, I don’t love that, I don’t love that or whatever it is. I bet you later on they go back and they’re like, you know what, I’m glad I had these, because that’s a moment in time that, you know, I have that I wouldn’t have had before.

Kristy W: That’s those details that I absolutely agree, like what it is that I am looking at and what am I looking for, it changes over time. So, the way I look at a picture right when it happens compared to a couple of months down the road compared to a few years down the road, different details stand out for me. And it’s something that I talk about a fair bit when I’m teaching too, just that idea that capture those things that you hate too, because –

Brenda: Yeah.

Kristy W: – you’ll look back and think like, oh I hate that monitor that’s always on my kid. But when you look back, that monitor might not be there anymore, you might not need that and you’ve moved past that and it just gives you that opportunity to look back and think, like look how far we’ve come. –

Kristy D: Absolutely.

Kristy W: – So, I –

Kristy D: Can – So, we’ve jumped into what you do, but we haven’t properly introduced you, because again, we’re not prepared.

Kristy D: That’s OK.

Kristy D: Could you share for our audience that doesn’t know who you are and, you know, just a little bit about yourself and why we’re chatting today?

Kristy W: Yeah. So, my name is Kristy Wolfe, as you have heard, but honestly, I know so many Kristy’s it’s ridiculous, so the last name is Wolfe on this call. I am a medical mom, so I have a son, I have two boys, but my son Kane was born eight weeks early and has congenital heart issues and congenital spine issues, he is now eight and I have a younger son named Maverick who was born heart healthy and just kind of is along for the ride and doesn’t love getting pictures taken of him as much as Kane does. I am also a storytelling photographer, I use my camera to kind of talk about the good and the bad and the silly and awful and happy and sad, because all of those things are a part of our story.

My focus over the years, I started out just photographing our own family’s journey through the NICU and then with heart surgery. But then I also kind of picked up, worked through Ronald McDonald House and I was photographing families in hospital or who were staying at Ronald McDonald House once a month for six years. [Unintelligible 00:04:54] developed my photography, like learned what I was doing, when I went into it, I had no idea what I was doing. But it kind of taught me that I love the storytelling side of photography, I love capturing what life is like right now for families, particularly in hospital or when they’re in that crisis situation and can’t always see the positive.

On my son’s most recent heart surgery, which was in September 2019, we had a photographer with us, who was also telling the story, so I was telling the story, she was telling the story, Kane brought a camera and he was telling the story and all of those perspectives kind of came together to see something that was not just for me. But I have to tell you, when I have somebody with me or lots of the times when I’m taking photographs of our family, like I’m thinking about my family and thinking about sharing the information. But those photos are for me, so that I can look back, I can see myself in the photos, I know that I was there too and that, like our family can do this, look what we’ve already done kind of idea.

Brenda: Yeah. And I wish, you know, as someone who had, so there’s two things that came to mind as you were speaking, and so one was, as someone who spent a lot of time in the NICU unexpectedly with Maclain, you know, I rely on a handful of photos that, you know, others might have taken. You know, me holding him or me giving him a bath and they’re grainy and they’re, and listen, it is what it is at the time and, you know, you do what you do, you don’t know any different. And I felt like I didn’t photograph that time as much as I should’ve, I think back now about the four months we spent and there was so many things that I wish I had documented, that I wish, you know, that I had a snapshot of, to go back.

And obviously, I have my memories, but you know, I think it’s really important, especially that NICU piece, it’s so unexpected usually, it’s so emotional, it’s overwhelming, it’s scary and, but you look back, and I look at people who have survived that experience and I think, wow like good for you, you know. And to know, you know, if I had had that opportunity now, knew that you were, you know, there was someone like you that could’ve done that back then, yeah, I think that’s a pretty amazing piece.

And the second part you brought up was, you know, I read something not too long ago about, you know, it’s always moms taking the pictures, right, it’s always, and I have people that will say to me, can I get a recent picture of you and your kids, I’m like, nope. And a lot of the time, you know; A, that’s just moms, that’s what they do, but I think a lot of the times too, it’s, you know, my hair isn’t right, my makeup’s not on, I don’t look perfect, I don’t want to.

And I remember, you know, reading this piece that said if, God forbid something were to happen to you or later on in your life, your kids aren’t going to care that your hair wasn’t done, they’re not going to care that you didn’t have makeup on. They’re going to be sad if they don’t have pictures of their mother, you know, doing things with them. So, you know, so two of the things you mentioned are really important, that you want to be in those, you want to show people, you for yourself want to know that you were in that moment.

Kristy W: It’s not hard to take a selfie or you with your kids –

Brenda: Right.

Kristy W: – but that is a totally like set-up picture. And I when I think about being in the frame with the kids, where I want them to see what it was really like I need somebody else to be there, because I can’t set that photo up, I need – to me the moment is important. So, like photographers talk about like light and composition and, yes, those things are definitely important to photographs, but for me the moment is the key. So, being able to watch as an interaction unfolds and like capture that moment that, like the emotion is on your face, or the touch is there or those things that like will speak to you down the road; I feel like I need somebody there to help me capture that.

And after, like I agree, when I was in the NICU I had taken a couple of camera courses, really had no idea what I was doing and just like they’re grainy, I was trying it out, I was playing around, but the photos that I’ve done for people since then have really been me thinking about what did I miss for myself and how can I do that for somebody else, so that they have those photos that they don’t realise they need at the time. –

Brenda: Yeah, agreed.

Kristy D: – Also like it’s not something, it’s not the first priority, like getting photos taken is not the most important thing when you’re dealing with a hospital situation. But I think for the coming down off of it and the resilience after, that it’s an important piece to be able to go back and see. So, I also know that it’s not for everybody [laughs].

Brenda: Well, no, and I think the other part of that too is, is you know, now I’m a little bit more raw in what I share and I have no problem posting a picture, you know, if Maclain has had surgery. Because I look at things now as; A, that’s my therapy; but B, people are genuinely interested and they want to know if they don’t know, they don’t know about some of the things we go through. So, I share those as part of my storytelling and people who are on social media know that I do that. But in the NICU, I felt like I, you know, every picture I felt like I took of Maclain of the time, I was trying to portray something that wasn’t necessarily happening there.

And you know, I just, I look back at the pictures of him now and there’s not a lot of raw pictures. There’s a lot of pictures that are of a happy moment or he’s wearing a cute little outfit that someone had sent me or, you know, it’s the first time that Graham was holding him or giving a bottle. And listen those are all important pieces, you know, of the day he was going home, you know, him with his favourite nurse. But they were a little bit, I wanted, whether it was for my own sanity, I don’t know, but I felt like I needed to, like look at this cute little picture of Maclain in his outfit and, you know, trying not to get the tubes in the background and trying not –

And I think now, like I would love to have a picture of him with me with all those tubes on him, I’d love to have a photo of, you know, of that kind of stuff, because it is fading from my memory. And you know, again I think it’s important to show those, but I don’t know, I was, you know, like you said, someone from the outside’s going to take those pictures that I wouldn’t have taken, because I needed to make sure he looked so little cute and I didn’t want it to look so, I don’t know, horrible if you will at the time.

Kristy D: Well yeah, but you were living horrible, right and so –

Brenda: Yeah, yeah.

Kristy D: – I think as a society we’re not trained to capture the, people try and gloss over the hard stuffs, so if it’s hard to live in it –

Kristy W: Mm-hmm.

Kristy D: – you certainly aren’t thinking about, I should probably capture this for prosperity’s sake, like –

Brenda: Right, right.

Kristy D: – I don’t know, I feel like, even from a patient’s perspective, like there’s a picture of me on Mother’s Day in the hospital with the kids all in my bed. And I didn’t know Simon had taken it, I didn’t ask him to take it, it was just me with the kids in the bed, but otherwise I would’ve had no photos with them that Mother’s Day. And he didn’t even show it to me until I was discharged and home and we were through that crisis and like I don’t look good, my hair isn’t washed, I’m in pajama’s, I think someone was hitting someone, but that is, that was our reality, right. So, when I look at Mother’s Day 2014, that was our life at that time.

Kristy W: Mm-hmm.

Kristy D: So, it wasn’t something that, you know, I would today slap that up on Instagram with a caption –

Kristy W: Yeah.

Kristy D: – but back then when, you know, I, we didn’t have social or social was used for other things maybe, like you almost feel like I’ve got this image, but I should probably hide it, it’s private –

Kristy W: Yeah.

Kristy D: – it’s just for us.

Kristy W: Yeah.

Kristy D: And there are some images I think that, take them just for you, but then Kristy, like you’ve shared images and we’ve used your images together to normalise that it’s OK to share your life as it is, it doesn’t need to be staged, it doesn’t need to be curated –

Kristy W: And I think that is –

Kristy D: – because life isn’t curated.

Kristy W: – a really good point, because there were so many happy images and that just, we still get lots of happy images out of the life that we have. But I think that normalising piece was really important for me, so that, our family that wasn’t close by could see what life with Kane was really like. And I agree that I also have shared more as I’ve gone, I’ve become more comfortable with like sharing the negative stuff. And again, not everybody sees our worst stuff, like Kane doesn’t even see the pictures that are that scary, because he doesn’t need to and it just, I need to capture it, that’s how I manage all of that and then who knows. I teach a class about telling your story through photography, and one of the things that I kind of end on, is like now what, what do you do with all the images.

But really when you’re starting, you’re also thinking about like, who’s my audience, is it just me and that’s OK, does it have to be social media, absolutely not, do you need to do anything with these photos, no you don’t. Whatever you decide to do with the photos is absolutely up to you and you shouldn’t feel that pressured, like I know a lot of people are like, oh well, you put them on social media or you do this with them. You don’t have to do any of those things, if you just want to keep them and print them for yourself, make a photobook, it doesn’t need to go out to anybody, but you. But I think that active photographing or seeing photos that you are in can play a really healing role in this whole life chaos journey.

Kristy D: Well, and Brenda something that you said, that I think resonated and can play on what Kristy just said, is your story changes. And so, like you in the NICU versus you 13 years later, your, what your intentions would be with those photos from that moment certainly wouldn’t be the same, I wouldn’t imagine from, you know, when those moments are being captured through to ten years later. Like I’ve, I can only, I’ve lost, I lost a parent very young, I would give anything to have all of those images, and we have a lot of family photos.

But to have, you know, that was like 30 years ago and I don’t know that storytelling photography was a thing and if it was, we sure didn’t know about it. But I wish we had, because that was our life and I would’ve given anything to have the last, you know, three or four years of our mom’s life chronicled and documented, so that I could’ve shared it with my kids today. So, maybe in the moment you wouldn’t, you would use them one way, but ten years from now you would use them another.

Brenda: Yeah. Well, and like you said, I think it’s also, you know, like exactly what you said, it’s the moment that you’re in, whether, you know, it was me just trying to, I don’t know, just trying to make myself feel better, right. I think, you know, you’re in that place where you’re like it’s fine, everything’s going to be fine, he’s going to come home and things are going to be good, it’s going to be, you know. And you know, I’m not an overly optimistic person as Kristy knows [laughs], but I think maybe subconsciously that’s [laughs], that’s what I was doing. And you’re right, I think it was just trying to, because you know, I’ve never really been one to shy away from sharing with other people the true realities of what is going on.

But yeah, I think, you know, probably subconsciously it was my defence mechanism just, let’s just, you know, take pictures of him as if he was a typical child and everything’s OK, like the ones that I had of Chase and yeah. And you’re right, and what, you know, you don’t think about in that moment that you’re going to want those, you know, later on, you know, down the road. And you know, and I’ve seen a lot of the work that you’ve done Kristy, and I always think about that when I see them. You know, I think about those moments that those parents will look back on those or that child will look back and be like, oh my gosh, I didn’t realise I had gone through all of that, look at me, you know, look at how much I’ve accomplished.

And you know, my husband and I will do that once in a while a memory will come up on Facebook or something will come up and, you know, something came up the other day. So, Maclain loves ice-cream, we went through a period of time, where you couldn’t put anything cold, we had to microwave yoghurt, we couldn’t put anything cold near him. And now the kid is – and it popped up on my Facebook page, and I remember thinking, look how far we’ve come. And there might be so many negative things or there might be so many things that we have not achieved, but as he’s ploughing through a container of Haagen-Dazs, that was not something that we ever thought we were going to see years ago when we had to microwave yoghurt. So, I think, you know, that’s a great example of having that, you know, reminder, so –

Kristy W: And I think –

Brenda: – yeah.

Kristy W: – I was just, so I have kind of like a video podcast going, called I was there too, and it’s talking with other medical families or other photographers that are normalising that kind of medical journey. But this most recent one I had our child life specialist on with us –

Brenda: Yeah.

Kristy W: – from when Kane had heart surgery, and it was really interesting listening to her talk about it. She’s been a child life specialist for 34 years –

Brenda: Wow.

Kristy W: – and she was just talking about like, the photography being so important for that memory creation piece. Like the memories do fade and there’s so many little things that you do want to remember down the road, so that was interesting hearing from her about that. Because I’ve interviewed Melanie about our journey and doing pictures together through the last year – and we can kind of come back to that, because that’s probably a big one. But I also, and this episode isn’t up yet, but I just also talked with a family that I photographed whose baby did not survive, and –

Brenda: Oh yeah, yeah those.

Kristy W: – Yeah. What those, what that experience was like and it was interesting, because it’s the first time I’ve talked to both parents at the same time and like we’ve had coffee. This is a family that I feel very strongly connected to, because I photographed their son prior to him passing away and then when they found out he was going to pass away. I got to the hospital and we did pictures like as they were saying their goodbyes after he had been unhooked from everything and they were just doing a bath. It was hard, but important, like I would want somebody to do that for us, like I think that that kind of a moment, you’re never going to have again, and those pictures are what’s left. And it’s not something that I like often will talk about, but when I do think about hospital families, I’m like, what if we just did this just to make sure, like –

Brenda: Yeah, just in case.

Kristy W: – just to have pictures just in case. And I do think about that in the back of my mind, like even when we go in for heart surgery, you never know what’s going to happen. Like documents and stuff, get it so you have it, you never have to look at it if you don’t want to, but I’d rather have it than not have it.

Kristy D: There’s no going back, right. But I had a nurse share for parents, I was with a family that had lost a child and one of the parents wasn’t, was thinking that they didn’t want to see the baby. And the nurse said, I never have parents come back and say I regret being in this moment, but we have families come back begging weeks or months later to have that moment again and it’s gone.

Kristy W: Yeah.

Kristy D: So, you know, not to sway you one way or the other, but it’s, I don’t, I think it’s so hard when you’re in that space –

Kristy W: Yeah.

Kristy D: – so.

Kristy W: And like you think you’re not going to want to remember it, right, like we’ll just brush this under the carpet, this part didn’t happen, like not just about death, but like so many other things that we go through. And I do think that every time I talk about our heart journey, our NICU journey, other things that have been hard, you, like a number of people have connected with me to say like, to tell their own story or to ask some questions or to find out a little bit more. And I think that’s a big part of why I do the photography I do and why I tell our story, because every time it feels like somebody else has like a little bit more to lean on and to help them build their own resilience.

Brenda: So, that’s what I was going to ask a little bit more about Kristy. So, you know, obviously, you know, we’ve talked again about, you know, your initial reasons for wanting to share and wanting to share through photographs and why you do that for other families and, you know, the effects and the impact that that can have for them. But you know, you sharing your story through photographs has, is, has not just been, you know, for social media or for things like that, like you’ve utilised those in other ways. Like I’ve seen you utilise your storytelling through photography in groups with medical professionals, with you know, clinicians, with patient partners; whoever that might be. And so, you know, I’m curious about that side of sharing, you know, it’s not just the sharing of your journey for yourself or to, you know, so that you have it, but the impact of your storytelling on the system or on, you know, that bigger piece. What have you found with that?

Kristy W: Well, yeah. So, I never thought this was what was going to happen with my photos, like I, taking pictures in the NICU was really just for me to play around and have something to do and it went from there. But I would have to say, like I started telling our story, because somebody approached me to join the NICU Family Advisory Care Team. So, the very first thing was like, volunteering with the hospital so that medical professionals could hear a bit more and we could help support patient and family-centred care.

Brenda: OK.

Kristy W: So, it would be like a new nurse’s orientation, I was like shaking and sweating and trying to tell them about my baby, like I did not like public speaking.

Brenda: Right.

Kristy W: And so, it started like that and it would be little things, like I was a teacher as well, so I would introduce my class to like what it’s like to be at the Stollery and we’d talk about Kane and like that not everybody looks the same way kind of thing, and not everybody has the same experience. So, telling my story, even with kids about what it looks like to go to the hospital, I started a blog about six months into our life to share more with our extended family, because a lot of our family wasn’t around. So, those kinds of things all kind of were leading up to it. And now, I am at the point where, like right now I’m doing a course with McMaster about family engagement in research and I’m trying to like slide in, how can we use photos for this [laughs]. –

Brenda: Yeah.

Kristy W: – [unintelligible 00:23:02] with blaming Covid is I can’t take the photos that I want to take of families, I have so many people that I want to photograph and I can’t do that. I can’t go into hospital, I’m not going to go into people’s homes, particularly with anybody who is immune compromised. So, the thing that I really thought was going to start happening, couldn’t happen, because of Covid, so pivot and –

Kristy D: I’m starting to hate that word, pivot –

Brenda: Oh my gosh [laughs], yeah.

Kristy W: – and talking to people about how to use photos to tell their own story. And so, between teaching at Arts Place and doing some stuff with Park Memorial and I speak at teacher’s conventions and I’m hoping to speak at some healthcare conventions. Just about how to use those photos, either as prompts to get people talking about stories, as just like that creative outlet for families or for people going through anything really, it doesn’t have to be a medical experience. But just how can you use photos to kind of help you through those things, so that story keeps coming back. And it helps me a lot to, not just have my photos of our story, but to have another photographer at the same time, like those two perspectives have been really huge for me.

And then this year, I don’t know, it’s funny, because telling medical stories about your own kid, like I came to a point where I was like, how do I do this without like, I’m not trying to exploit anybody, like I’m not – I get hit with like guilt sometimes about doing this kind of thing and what I come back to, I talk to Kane about it, I make sure he is still comfortable with it and that’s’ where we’ve kind of gone to telling this story together and using photos together to do it. And also, I’m finding that I’m starting to do more stuff that is more about the details of it, like – so if you wanted to share your story, it doesn’t necessarily have to be full-face pictures of people –

Brenda: Yeah, yeah.

Kristy W: – like how could you focus in on the details to share a story, and I do think that Melanie has done an amazing job. So, I photographed Melanie and Ella, Ella has Rett Syndrome. I actually met Kristy through Melanie, but there’s so many connections –

Kristy D: Six degrees of separation.

Kristy W: Yeah.

Kristy D: Yeah.

Kristy W: And what we’ve been able to do with the help of Chronically Simple, is to photograph their journey in different spaces, just like regular things, like going skating or biking, as well as medical appointments, as well as therapy appointments, we would love to be in school, but that’s not going to happen at this stage of the game. But Melanie has done a really good job of taking those pictures and adding words to them –

Kristy D: Mm-hmm.

Kristy W: – so that they could go back and find a picture and then explain something that’s going on. So, for example, I’m thinking about like recently she’s talked about Ella’s hands and the reality that that function could decline and like talking about her worries and then she’ll use a picture of Ella’s hands from one of our sessions. And just, I think that images can be such a jumping off point to telling a part of the story that doesn’t have to have, it doesn’t have to be the image from right that moment, but this image makes me think of that and now I’m going to talk about that side of things.

Brenda: See, and that’s what I thought about. So, when you mentioned about the course with McMaster and I’m really familiar with that and I know people who have been involved with it, with that family engagement piece. And that was sort of the first thing I thought about, was you know, it’s hard to articulate, a lot of the times, our perspectives, our experiences. We know the value of using infographics in research, you know, we’ve seen it even as an example with the GMFCS, when they did the re-illustration, how that helped families with, from the CP world. But I think about things like … again like even this example like – So, I posted a video a couple of weeks ago of Maclain eating steak, and I don’t know why everything’s eating, but he, it’s eating and –

Kristy D: He likes food.

Brenda: – He loves food. And so, but think about this child who’s very significantly affected physically, his CP affects every ounce of his body. And we had been told numerous times, you know, and not in the nicest way, that he would never probably eat orally, that he would be tube fed, all these types of things and then I see him, you know, chomping down on a hunk of steak. And you know, my first reaction is, I have to show this to the doctor, the speech therapist, the, whoever that was, right, and not in a, [he-he 00:27:22], but in a like, oh my gosh you guys, like look at this. And I think that’s the way that I envision, again it’s one thing for us to try to explain our situation when we’re in a family engagement piece and to give our perspective or to give our point of view, but you know, using photographs to illustrate that.

And that helps the clinician, right, that helps the person on the other end and we, again you know, we, we’ve done a lot of that. And I look at families who try to explain what something is that their child is doing or something that they’re, and it’s hard to do that. And that’s where I seem, you know, the ability to work in those other mediums into a course, exactly like that. Because to me, I hear that, I’m like, that’s a perfect opportunity to work something like that into there. Because it just is another way of detailing or providing that experience that you want to share to better engage, right, that’s the whole point of that, is to increase those engagement opportunities. –

Kristy D: But can I say –

Brenda: – Yeah.

Kristy D: – can I say something there from a business perspective? So, we’ve talked about, you know, for the family and we’ve talked about for healthcare providers. But I look at this and I’m listening to you speak and I’m thinking about, well I speak about Chronically Simple, because what makes Chronically Simple special to me, is the fact that we built it with patients and caregivers. And so, then the idea when I, when we were looking at launching it and marketing it, the idea that we wouldn’t then showcase patients and caregivers in our story authentically versus in a stock photo. And I love the images that you have taken and that Melanie has graciously shared or that our other families that we’ve worked with have shared with us. Because to me, that resonates with the people that my organization is trying to work with; and I know I’m not the only organization out there that works with medical families or patients or caregivers. I just, I don’t know, I think everyone needs to use you Kristy Wolfe is what I’m saying.

Kristy W: I know that. And Brenda I want to come back to something you said about Maclain and the steak and I think you were talking about like, you want to show it to healthcare professionals, I want to show it to families who are just starting that journey.

Brenda: Yes.

Kristy D: Yeah.

Kristy W: And like for that hope a little bit, about this is what the doctors are saying and I’m glad they are, like I need you not to see a picture that’s not realistic, but I also need people to know that like, that’s not the only way it could be, like there is hope. And then Kristy, I wanted to mention too, like I think it’s unbelievably important for families to get those kind of photos. Like so, again photography is not a priority for most families when they’ve got medical bills and all of these other things going on. So, the way that Chronically Simple had structured it so that we would take photos for families, the families would get those photos for free. And then you would have access to the ones that they were OK with you using is a really huge piece, because it takes out that barrier of payment.

And from a photographer’s point of view where medical, special needs and palliative families are who I want to photograph, I also have to think about, how I come down off of those, how much time I spend with a counsellor after. Because it’s not something that you can just do and do and do and not deal with it, like there is a lot that goes into that piece. And so, I think there’s a couple different things there, just that –

Kristy D: Mm-hmm.

Kristy W: – I want families to get photos. And there have been a couple of times where we’ve worked on projects where maybe … healthcare professionals are being able to use those to tell a story for different purposes. But then the key to me is always getting those photos into the hands of families, so that they have them themselves as well –

Kristy D: Mm-hmm.

Kristy W: – and they can use them for their purposes.

Kristy D: Well, I think it begs, we have these conversations and I had one last week about patient engagement and advocacy work and not, you know, not just using a patient or a caregiver. We talk a lot, Brenda and I, about being respected members of the team and being treated like a respected member of the team. And I think that would even, to what you were saying Kristy, like if healthcare professionals are using these images, the families at the very least should be getting them and then the people taking them should be compensated for them. You know, take advantage of or … sometimes we get used to further people’s agendas, we’re a token patient on a stage, we’re token caregiver at a conference. And I think that as we continue down this journey of engagement and family-centred care, patient-centered care, you can’t use the people that are telling you their stories. Like –

Brenda: So, Kristy that’s, it’s interesting you should say that and, you know, I’m no marketing expert either and I remember when I first started, I mean you guys know I wear a million hats. But I’m not afraid, I’m not shy about showing pictures of Maclain, showing pictures of Maclain playing baseball, showing, you know, people say to me, you know, do you mind sharing this, do you mind sharing that, and I don’t, I do it. Even for school all the time, I share pictures of him doing this and that, I share – And I remember when I started either as my trustee role or in my other job and we would talk about things, and I’m like, well why don’t we, because I don’t like stock photos at all.

Like my poor marketing department, when I got there, they were like, what, I said, no, no, real photos all the time. And I remember coming in and saying, well why don’t we put some pictures of Maclain, like why don’t we, and we were having this conversation about our new website at work. And they said, you know, we need a picture of a family with, you know, and I said, but we’re former clients and we have a little, like that’s a real picture, put that on. Anyways, and I love it and it’s beautiful and we’ve done that, and we’ve done that a few different times.

But here’s the thing, we have been accused before, and you are utilising these photos in a way that is glorifying or something. And I’m thinking, I’m not glorifying anything, this is an actual child, he’s my child, I want to share his story and my story and I can, and the best way to do that is to show a picture of him. If I’m trying to talk about physical barriers to access, what better picture than showing him not able to get into a building. But then you get those people that say, well you’re just using that for a shock effect or you’re using that for, you know, to try to change, and I think, gosh like.

So, back to your point Kristy is, you know, I think we sometimes are worried about utilising those types of photos for fear that people think we’re just using them to, you know, drive profits or to increase marketing or to bring in – When really, we’re like, no, to me, I’d rather be transparent and truthful and actually use someone who’s in that situation than to pull a stock photo out and use that, because then there’s no correlation there, I don’t know, that’s me. But we’ve been accused of that and I’ve had to step up to say, woah, woah, woah, my kid, so –

Brenda: – I can exploit him any way I want [laughs]. So yeah, it’s weird.

Kristy D: I don’t know, I think it’s, maybe it’s because it’s a bit more new and, or at least new for us and these conversations are becoming a bit more regular. But Kristy the way that you’ve handled it with Kane; like A, asking permission, like I always ask my children permission before I post their photos or use them for Chronically Simple or anything else, for school or whatever. And so, getting that consent is important and then getting their involvement. So, my middle son charges me $5 a photo, because he’s a budding entrepreneur and he’s like, well if you’re making money, I’m like, due I’m not getting paid to show your beautiful face, so just, you know, fix that.

Kristy W: My younger Maverick is not really interested, though interesting story, he, so recently there’s a photo contest in Edmonton, called Infocus Photo and I put in an image of Harrison my husband and Kane in the hospital and it was up for a People’s Choice Award. So, we had friends voting on it we were talking about it and it ended up winning the People’s Choice Award. Which is awesome, because I think again, that just normalises that medical photo idea, that stories of things that are hard are important. But Maverick was like, how come you never put a picture of me in a contest, and I’m like, dude I have a great picture of you, it’s got a snot bubble, you –

Kristy D: Right [laughs].

Kristy W: – I love the photo and when I blew it up, you had a meltdown.

Brenda: Yes.

Kristy W: So, I know that you don’t love photos, but that means I can’t use them for these kinds of things. So, we, it was interesting to have that conversation with him –

Brenda: Yeah.

Kristy W: – because Kane is photographed more in the way that we put it out, because Kane’s OK with it and because he’s interested in telling that story as well. Like he wants to tell the story about going to the hospital, so then it’s not a big deal, whereas Maverick doesn’t want to be, like we’ll take photos, but he says, mom don’t post that, and I’m like, OK no problem I won’t use –

Kristy D: Yeah.

Kristy W: – And again, yeah, that consent piece and letting them have ownership, though, I don’t know how –

Brenda: I don’t ask.

Kristy D: Well, and yeah, but then you get the flipside of, my daughter is like, can you post this and will it –

Kristy W: Yeah.

Kristy D: – go viral, but I’m like –

Kristy W: Right.

Kristy D: – no, because you’re an eight-year-old in Burlington and all you did was stand there and smile, so no one, like. So, also understanding that, you know, just because you smiled, doesn’t mean you’re going to win the People’s Choice Award. So, we thought –

Kristy W: She should.

Brenda: She really should.

Kristy W: Right.

Kristy D: I mean, no, definitely not.

Brenda: A lot of why I do share, is for those families who have not come down the pipe yet, who are, you know, at the beginning and – But I also have to be careful, because sometime people will say to me, you know, oh my gosh, I see the stuff that you do with him, and I see the pictures you post and experiences that you have and I feel like a bad parent. And I can’t do all that, and how do you do all that, and how are you supermom, and how are you able to do this, and how are you able to do that. And that’s also a Catch 22, because I’m not supermom and I document the meltdowns and I – But are we an active family, yes, do we do a lot of things, yes, do we pay the price for it with our back pain and advocacy and all those things, yes, we absolutely do. But it’s a catch, because I want to share those, but then I have had people message me that say, Brenda like, what, how can I be more like you and that, how can I do more with my kids.

And I think, oh man, that’s not the point of this, you know, that’s not, I don’t want you to feel bad, I just want to show that it’s possible. And that’s why I think I try to balance out those positive experiences with the negatives, like you’ll see, you know, I’ll show the Instagram photo and then I’ll show the next picture I took which was him sliding over or vomiting or something. Because it is a Catch22 if it looks to documented, and I don’t want those families that are, you know, again I don’t want them feeling bad. And the opposite, I don’t want people who have been newly diagnosed with a child with cerebral palsy who have all this hope in their heart and then they see that he’s in a wheelchair and then they think, oh man is that, it’s really a Catch22 sometimes, you know, on what you –

Kristy D: That is complicated.

Brenda: It is complicated, that’s why I don’t sleep, but –

Kristy W: [Laughs] But then I also like, with that piece about telling somebody else’s story, this year I am telling more of my story through a self portrait project and just thinking about, how can I still talk about these things, but not with showing Kane so much. Or like, and just focus it more around the caregiver part of it, because that is a big – Like I can tell Kane’s medical story in the purposes of like sharing that information so people like understand in healthcare or that kind of thing or other families can connect. But my story is more the caregiver story and what that looks like, of being the mom and managing appointments and like all the things that come along with it. So, trying to find different ways, and we talked about this a little bit earlier too, about like even just, and maybe it doesn’t have to be me, maybe it just is the details that we’re working on at that time, it doesn’t have to be face pictures if you don’t want it to be.

Brenda: Yeah.

Kristy D: Well, can I say, you know, full transparency Kristy Wolfe was supposed to come, and we had really big, big, big plans before the Covid hit, and so we’ve had to pause those plans a little bit. But what it’s given me, is another year to really sit back and watch as you navigate your story and your photography, and something that you’ve started with Melanie’s project about the ‘I Was There Too’; that is something that, not, I’m not a medical mom, but I want to be in pictures for my kids. So, I don’t even think you need to be, not to minimise the caregiver experience at all, but I think that that’s something that should be intentional for all moms. Regardless of what your story is and regardless of how you look that day or how you’re feeling that day, get yourself in the picture in some way, capture yourself in the moment in some way, because you snap. It’s like the old, the days are long or the year, the days are long, but the years are short, is that it; see I don’t even get it right.

Kristy W: Yeah, I think that’s right, I think that’s right.

Kristy D: I don’t know, you know, time flies, right.

Kristy W: Right.

Kristy D: So, all of a sudden, your kid, like my oldest is going to be 14 in May and I didn’t want any pictures taken with him in his first year of life, because I thought I looked fat.

Kristy W: Right.

Kristy D: Like really, really, and then what a disservice that is to my whole family, so I think you’ve shared such good lessons in watching you over the past year evolve your story and, I hate the word, but pivot your business; we’ve all learned from it in watching you as well.

Kristy W: Yeah. And I think, like we were talking about that family that I got to talk with mom and dad about the photos that we took, and it was actually dad that didn’t want to take, like didn’t need a photographer to come in. And that’s pretty normal that’s its mom guiding, getting a photographer hired or brought in, but he had different reasons that I usually hear. He loves taking the photos, he brought all his photo equipment to the hospital and he wanted to be the person taking all the photos. But when they talked about it, they recognized that they wanted both parents in those photos, so just that idea that it’s not always just mom that can get to be in the photos, but the family together is a big focus. And like how do you show everybody without just that, because we said to take a lot of, my parents would hire a photographer and we’ll go and pose together and it was always like, the worst day, like everybody was [unintelligible 00:42:20] –

Kristy D: Yeah.

Kristy W: – and you’re trying to –

Kristy D: I’m not wearing jeans; I’m not wearing that mom.

Kristy W: – You want us all to match. And so, that idea of when I go and take photos of a family, yes, I’m trying to get them all in the frame at the same time, so there are family photos, but not grinning at the camera family photos. More of that, this is what we are doing, this is where are at and we’re all included, but we’re kind of doing our own thing, is a key for me too when I’m thinking about photography.

Brenda: One of the best photos that I have of Chase and Maclain and I’m looking at it actually right now. One of the best photos I have of them is a photo that was taken by a photographer, years and years and years ago, so they’re quite young; and I want to say Chase is maybe six or seven and Maclain’s four or whatever. And it’s a picture of Chase pushing Maclain’s wheelchair, it’s black and white, it’s from the side, so you can just see the side profile of them, it’s further, it’s a little bit down the path. – I’m doing this, although people can’t see me, I’m pointing for those of you who can’t see me –

And he’s actually titling his wheelchair back a little bit and Maclain is howling, you can see his joy, you can see, it is one of the, I don’t know when she took it, I didn’t see her take it, it is one of my absolute most favourite photos that I have of them. And again, it’s black and white, it’s from afar, but it just, it captures their relationship, it captures that piece that – It’s truly incredible and I absolutely love it and that’s, you know, it’s not them smiling at the camera, it’s not them posing, it’s nothing like that and yet it’s my absolute favourite. Because again, I think it just really define their relations and it just define, it tells a lot in that one picture.

Kristy W: Mm-hmm, you couldn’t have planned that –

Brenda: No.

Kristy W: – it wouldn’t be the same to plan it, it wouldn’t feel the same to plan it, And I find like when I do, so I will trade services or hire a photographer every two years for our family, unrelated to medical stuff like, and that’s just something that I’ve chosen to do, because I want to be in, there in pictures. But I find the first look through of photos, I’m looking for like, really like, what can I put on a Christmas card, like I still want to be able to do that, I still want like a nice photo of our whole family. And then the second time through, I’ll be really looking for like the moments that stand out to me like, so each time through I kind of see something different. And then, for example, another person I had on, ‘I Was There Too Series’ is Kelly Marleau and she was a photographer that’s come and just done like an evening in the life of our family and hung out with us. And some of my favourite photos from there are just things like kids crying.

Kristy D: Yeah, yeah.

Kristy W: You know, yeah, they were drying then –

Kristy D: A good punch from the brother, yeah.

Brenda: Yeah.

Kristy W: Right.

Brenda: Yeah.

Kristy W: And so, just recognising that when I went back to look at those to put together the blog post, these are two years ago and now I’m seeing them and I’m thinking about them in a totally different way than I did when I first got them and then when I decided which ones to print. Now, I’m looking at different pieces of it, because that part is gone, and so, yeah, I find myself doing it to.

Kristy D: Yeah, the evolution –

Brenda: Well, I always call BS on those anyways [laughs], when I see those photos, I’m like I’m a mom, I know how many threats went into that, I know how angry everybody was driving there, I know exactly what was – And again, you know, I tell the story of me taking those picture of those first Christmas pictures with Maclain and oh my, you can’t even imagine what my household was like. I mean I, there was wine involved and I would cry and Graham wouldn’t come near me and everybody would be sweaty and the kids would be upset just so I could get a picture of them in front of tree in a matching pyjamas without somebody falling over. And like I said, three years into it, I went, oh OK, I don’t care what you do and I as long as I get you – And this year my older one wouldn’t let me take his face, so I have a picture of my husband’s butt, with my older son to the side and my younger son – And all you can see are the pyjamas bottoms, so I could prove they had matching bottoms, but nobody will, but I’m like there it is, I did it, I had matching, but I couldn’t –

Kristy D: Beware the days –

Brenda: – I couldn’t get –

Kristy D: – beware the days.

Brenda: – the photo. And you know, it’s those, but here you go, but there’s a story to that.

Kristy D: Yeah.

Brenda: If I had a perfect picture of them all sitting on the couch, all matching, what’s the story to that, there’s no there, like this is the story, like we said, this is telling stories, so.

Kristy D: We have listeners.

Brenda: We have lots of listeners and they want to know how to find you and they want to know how to learn more about you.

Kristy W: Well, I am on all of the social media, I think, except TikTok –

Brenda: All over social media, like all over social –

Kristy W: – but like [unintelligible 00:46:51] I can’t keep up with any of it, but Instagram, Kristy Wolfe and yeah, check the spelling, because there’s a lot of us Kristy’s out there with different kinds of spelling. My website is kristywolfephotography.com or .ca and from there you can get to any of the things that I do. I have a book on there, ‘Tell Your Story Through Photography’, which tells our medical journey. And then also, the second half is kind of like a workbook with like ideas about how you could tell your story, and not necessarily a medical journey, but the proceeds from that are going towards telling more stories for medical special needs and palliative families.

Kristy D: So, I think what we’re going to do, because again fly by the seat of my pants, is we’re going to buy five of those books and give them away to our Instagram followers. And we’ll figure that out –

Brenda: Yeah, we’ll figure that out.

Kristy D: – and we’ll figure out that.

Brenda: In the notes, right –

Kristy D: Yeah.

Brenda: – in the [unintelligible 00:47:41] note, and it will on the social media when the podcast –

Kristy D: Yeah.

Brenda: – goes out.

Kristy D: Yeah.

Brenda: Yeah.

Kristy D: So, to thank you for your time and for putting up with this non, you know, non-prepped podcast, which will hopefully be the first of many that we can chat through. We’re going to give some of your books away to our listeners.

Kristy W: I’ll take it.

Kristy D: Or our Instagram, I mean, we have more Instagram followers than –

Brenda: We’re going to give away five books, that’s the bottom line. –

Kristy D: Yeah, period, that’s it, yeah.

Brenda: – [unintelligible 00:48:09] and we’re going to figure it out.

Kristy D: Yeah, so I want to be respectful of our time, we should wrap up, because we are at our limit, but we will, you know, thank you so much for chatting with us today and let’s continue this discussion. And please let’s be able to travel again so that you can get down here and hang out with our families with your camera.

Kristy W: Take some photos.

Brenda: Yeah.

Kristy W: Well, thank you guys, this was awesome.

Brenda: Thanks Kristy, we’ll talk to you soon.

Kristy D: Thanks, bye.

Narrator: Thank you for listening to this episode. To make sure you never miss an episode please subscribe on Apple Podcasts, Google Podcasts, Spotify or the App you are using now. Visit us on the web at chronicallysimple.com there you will find recaps of each episode as well as links to all of our social media channels. Like Simply Unbreakable, leave us a review to help others find us as well.

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