[Music] We want the administrators, we want larger organizations to see that two rappers around, to see like, do you notice that when you have a child life specialist, we've decreased trauma, that the kids are actually coping better, maybe they don't need as much medication, maybe they don't even need anesthesia, because we've prepped them for it. We've decreased things for them, and they're getting discharged sooner or two. That's all because we're coming in and doing the things where you don't need to have medication or have children being held down. There are things to do where we can make it a lot better for families to experience, and there's a benefit. We're hoping that administrators and larger organizations see this, but I will say, too, being in the field for so long, a lot of the organizations that are created nonprofits, they're created from families, which I think is just so beautiful. Oftentimes, you guys, you've experienced, you know, and then you're like, I want to give back, I want to figure out how to also help. They team up so well with child life because they get it, they see what we do, and that could be them doing toy donations, or it could be them paying and doing a fellowship, sometimes they even offer little scholarships for students. I mean, there's been so much I even have I have a few that pay for child life services they pay for me to go into homes or do virtual support for families because they have seen the benefit themselves. So yeah. It's like I said, it becomes it becomes one big family and you know, we we love all of the the child life specialists that we have worked with and our hospital in Green Bay where JC received, you know, her chemo treatments and radiation treatments. All of that was there every year. We're actually in the middle of it right now every year. We donate. We do a toy drive for them for Christmas. We do $5,000 worth of toys to fill the child life toy closet every year. And that's all in JC's name. That's all, you know, our organization was created, you know, with JC and now we do it in her honor. And we do that because we know how much joy she got from it. And we know how much joy other parents and families can get from it. And it's the tools that are given to the child life department there that they're going to be able to pass that along to so many families. And that's important to us because that's that work that you do and that that whole field does you don't get into it for the money, right. You get into it. This is probably one of the fields very few in the world of going and going into work after you get out of high school that you go into simply for the love of that job for that field because you truly have a compassion for doing that and giving back to others and all of that you love it. You go into it for that not for the money and that means so much more because you know cliche right if you if you if you love what you do you never work a day in your life. And it's kind of that kind of thing right. I mean, yes, it would be nice if if you were getting paid more because I think you're worth it, but you're doing it for a much more. A much better reason I think than the paycheck that's going to go in the bank and that's just I think that just shows who the people are that are in this field. Yeah, no, you nailed it. I just said that the other day somebody I was like I don't feel like it's a job. It's not a job. It's something that I love. I really truly couldn't imagine doing anything different and you know the pays not great, but I we make it work and and I love it. I love giving back. I love to teach my kids the importance of this stuff to and give back and it shapes you into being a different human being. Look at life differently and it's because of families like you. I'm sure that you've all made a huge impact on many people that you've that you've encountered in the hospital and you continue to do and Jesus legacy by. You know those huge donations that makes it makes a big difference to families and I think that that is so beautiful that continuing of holding legacies is very strong and giving back. It's like kind of like a full circle of just it's really it's incredible. There are a lot of positives that do come out of tragedies, you know, can we can make things a little bit easier or lighter and provide families with lots of love and support as they deserve. Absolutely. It's it was one I guess it was born from the fact of we were on the other side and we we felt everything that was that was given to us and the care that was given to us. And we had to turn around and give that back. And I think it's it really is something that again it's it's not work for us. I mean it's there are no days off when it comes to this. You know nonprofit work and all of that thing and it's there's no days off and it's 100% 100 miles an hour every single day. Sometimes to your your health and your physical detriment because you put so much into it. But it doesn't feel like work. It feels like you're you're giving something back. It feels like you're doing what you're supposed to be doing. I think that we were all put on this earth for a reason, but we don't know what it is and you just kind of fall into it and I think yes, I think I was put on this earth to be a voice. I just didn't know this is what it was going to be for. But at that same point I'm going to do it because it's a passion and because it's a love. And when you get to be a part of an organization like this or you get to meet amazing people, then I feel like we're put in my path for a reason. That's to me that's fate and that's what JC does for us and she puts people in our path for a reason and she you know allows us to meet and allows us to collaborate. And further expand not only you know pediatric cancer awareness, but awareness for child life awareness for you know the medical field everything anything that we can do them to get the word out for something other than you know our day to day life. Then that makes that means that we've succeeded for that day. So it's it really is kind of it all comes full circle. It really does. But you know you never know who you're going to who's going to be in your path and the people that you meet. Like I said, two in the morning here's a blanket in a book. I don't know what they're doing over there and then you know this many years later without that that little moment. I don't know that we would have been able to get through the rest of that evening. So it's it's impactful now. Even five years later. Yeah, absolutely. I'm glad that you guys had that support then to it's funny because oftentimes I say that to new child, a specialist or students, I'm like they probably won't remember your name. They probably won't remember this or that, but they're going to remember that that person came in their room and maybe played checkers with them or brought them a doll and taught them about what was going to happen. Maybe some significant core memory where you've actually shifted the way that child and that those parents were feeling and that's what they're going to walk into and that's that is huge. It's not about anything else. It's about how we can help families feel seen and heard and validated and help you guys cope through things that are incredibly challenging. 100% have there been any families, any children that you've had contact with over the past 20 years that have decided to go into this field because of the interaction that they had with you or with child life in general. Yeah, there's there's a handful and also a handful of siblings that are interested into the field and looking to getting into it and taking that path. There's a handful of them who were a patient at one point. That's why they got into the field is because they got that love and care from a child, a specialist and then they pursued the career. A lot of child, a few friends that were a pediatric cancer survivors and now they're doing this work and it's because they worked with a child, a specialist. Absolutely. And I love that and I have heard that story as well as both the survivors, but it well as parents that actually go into nursing and go into medical school because of all this and that's incredible because we're essentially building the next generation that have that that physical connection to this that can provide such a different level of care because they can they understand it that much more. And that is that's bar none you can't beat that, but the other thing like you mentioned siblings and siblings have such an incredible role that honestly a lot of times gets left behind or forgotten about because you're focused there and it's it's not. It's not a thing where the parents forget it. Listen, I have two older daughters and you know and with then there were two older sisters adjacent and I guarantee that I forgot and I missed a lot of things and I regret that to this day. And there were a lot of things that I couldn't do nothing we could do about it because of treatments or being in the hospital and things like that.
but I feel like, like I missed a lot and like I failed them, but they have such an incredible piece to this puzzle because we would come home and all she wanted to do was see her sisters. We're in the hospital, all she wanted to do was get on FaceTime and talk to them and they would sometimes get on FaceTime and not talk for two hours. It was just like they're going to be here with me and they're going to sit here with me and that's, you know, and we go every single year we go to CureFest and DC and they're doing more and more programs that are being centered around siblings and sibling connections and things like that. It's, they really are kind of like unsung heroes in any type of diagnosis that involves a younger or any older sibling because they're like their best friends in the world and I always tell that to my girls like these are the best friends you're ever going to have. They're the ones that are never going to turn their back on you. They're never going to walk away and they really should just be praised all day for what they go through to but much like us parents, I think, hold it in because they don't want to put on due stress on their sibling that's going through something hard. Yeah, yeah, you, I mean, you nailed it. And it's, I mean, we notice it too and that's also why we try to intervene and say, hey, if you have other kids, like, let's get them into the sibling group or for me, like to come and kind of work with the siblings as well because it's not that they're, you know, forgotten about, but they kind of, your attention here. Because it's shifted. It has to be and there's no guilt on parents like you guys have like that is like your guys are in the crisis with this one you have to. And there is, it's all grief related, right? As soon as there's diagnosis, it's all grief, like, home, lame, holy, our world just shifted. And the siblings feel that there's a lot of jealousy, a lot of resentment, a lot of anger, confusion, even abandonment. They also have that other side where they swing and they're like, but I feel guilty because I love my sibling and I, you know, I don't want them to go through this and they have so much empathy. They're also, it's okay to have those other emotions too because it's right there with you, just like for parents, like, you know, you just said, you're like, I feel so guilty and that you had missed out on things, but also it was necessary. And I'm sure that your girls were in good hands and being taken care of and you guys had, you know, different things put in place to make sure that they were still being heard and seen and look at them now. I mean, they're obviously very much involved with the nonprofit and one of them wants to pursue the career. I mean, they're going to continue to honor their sisters legacy. Yeah, they, I know going through it and having the conversations with them, you know, after the fact that things like that, they don't hold resentment towards me or my wife for you know, kind of having to shift our focus on our daughter, but you know, internally, internally, we always kind of feel like, you know, we did something like overall, I feel like we failed JC because we couldn't save her, but I know in my heart that we did everything that we could, but it's just one of those things that you can't get past. Just like you're always going to ask the what if questions, even though you shouldn't, because you're not going to know the answers to them, but you're going to continue to play yourself with those. We shouldn't be Google doctors, but we are. And sometimes something comes up, we look it up, we shouldn't be, but you know, you, you research it to the point of exhaustion and it's, you know, it's, it's unfortunate, but it's, it's an unfortunate side effect of all of this, but it also proves to that, you know, not only the patient, but the siblings, the parents, the whole family really needs to be involved in what, really what child life can provide and what, you know, the, the psychology behind it and everything because we're all affected, we're all affected. And just because it says child in the beginning, and the name doesn't mean that we can't all benefit from what is being provided in the services. So it's, it's, it's one of the, I just want everybody to understand how important this field is, but not just for the child, but also for everybody involved because you are all going through something. We're all feeling something. We all have, you know, I've been, I was told that out of everybody that I probably should have been the one that went to therapy because I was the one in the hospital with her all the time doing long stays. And I, I have never done that because I feel like this is my therapy talking about it and connecting and running, you know, nonprofit, like that's how I, it's therapeutic to me, but maybe one day it comes down to it that, that I have to take that route and, you know, and that's okay, but it's just, I think we're also, everybody's a little, you know, we're proud to not to want to talk about things or it's all for the kid, it's all for, it's all for them. Don't worry about me. That's what we as parents do. We don't worry about us, but at the same time, I say it all the time as the oxygen mass theory, right? You have to protect yourself and take care of yourself before you can take care of somebody else. Absolutely. And you guys are definitely very much part of, you know, which child life comes in. Like we're family centered care. That's what we are. It's working with the patient, the siblings, the grandparents, the cousins, like we get the whole, everybody, everybody is impacted. It's a domino effect. We also know that that's why in the community for child life, it's a ripple effect, right? Her classmates, like, you know, things that she might have been involved in, neighbors, her friends, they're also impacted. So to be able to provide a service and show that like everybody is included and everybody should be able to be seen and heard and validated and find healthy tools to express and cope, I mean, then that's us doing our job because that's the ultimate goal is just creating that space, creating that space for people and helping them to kind of just process and navigate in a really healthy way. Absolutely agreed. I think I wish, I mean, like I said, I could talk about it forever and I think that the impact you can obviously tell has been there for us and for our family and to kind of hear, you know, from you and like also with our experience is putting it together. It just proves how important this field, the study, the, you know, all of the both in the hospitals and private practice, everything connected to this is so incredibly important. And it's such a big giant piece of the puzzle and a part of the puzzle that maybe not everybody knows even exists. I know we didn't know it existed until two o'clock in the morning on that, that evening, we had no idea that it was even a thing and we probably were in the hospital, you know, growing up there and there and they were probably around and we had no idea. This is not something that is publicized and talked about and it's not, you know, you don't see commercials about it. There should be what there aren't and it's, it really isn't, I love talking about it. I love trying to get the word out there and I wish to the heavens that that we could just find billions of dollars to support this program all across the country and not only support the program, but make sure that the people that are in it have the resources they need so that they don't burn out and that they can actually continue to do what they do and what they love. Yeah. Without the worry of breaking down or having to walk away because they just can't do it for the worst part of it, which is financially. Yeah, no, I agree. And that's why I'm an offer and reflected supervision and sometimes some of us are in therapy ourselves. So trauma therapy has saved me and has allowed me to continue this work and also be a good parent, right, and a good wife and a good friend. I know how to compartmentalize it and process it, but that stuff is vital and you really have to start that practice before you get burnt out because I definitely don't want that. I love this job. I couldn't imagine not doing it. So I still have that pet. So I know I'm good. I think I'm not in the compassion fatigue area. I'm not in the burnout area, but there are definitely days that will come and you're just like hit and you're like, oh my god, this poor family or now I got another call that, you know, they're going to hospice or now we're end of like, it's just, it's a lot of trauma. So there should be more awareness on how to take care of us and how to sustain us in the field. And also to make sure these students aren't even burnt out before they get in, like we don't want that. I want them to be able to have a good experience as a student. I had a great one, but the field wasn't huge then. I mean, everybody knows about, well, I should say not everybody because now everybody knows about child life, but the, there's just more students now than internship and programs. And at the time when I went in it, there were only four graduate programs, only four. Now they're all over. So it's definitely, you know, definitely a shift for sure. I wanted to, and I wanted to ask this question just because I think it came up in the beginning, but how do colleges or schools when they're going through these programs or even you maybe as somebody that's teaching somebody that's coming in, how do you prepare them or how do you give them the tools they need to deal with, you know, working with a family, say that day that's coming in and they're getting that news that there's nothing more that they can do. And it's go home and make memories, which is the worst quotes that we can hear as families and we hear them too often. How do you prepare them to deal with that both in the room and then once they leave the room? For to prepare the students to prepare the families. The students. The students. Yeah. Then it's definitely having a, you know, your brief meeting before you're letting them know you're given that quick space to kind of process, but then we just go into that, that mode of like, we have to compartmentalize. I can't break down. I can't be hysterical. Stop.
in front of parents. I don't want that to shut down their emotional. My job is to be with them, to allow them to express and to help them cope. And then we do a lot of debriefing after, and a lot of processing after. So that reflective supervision is key for child life specialists, meaning you're working either in a group setting with like a well-seasoned child life specialist, and then a small group of child life specialists, and you're processing different things that have happened during the week, different cases, or it's individual. It's one-on-one, which that is a time where a lot of a-ha has come up, where you didn't realize you could compartmentalize in it, and then it came up in that session, and it helps you kind of make sure, did you do everything, what could you have done differently, or just the space to express it, like, I'm so sad, like, I love this family, and it's just like, I hate cancer, like, I hate it, because it's just so unfair of what people have to go through. Unfortunately, especially to childhood cancer, a lot of people don't want to talk about it, because they don't think it happens, but it's actually not rare. There's a lot of kids who are getting diagnosed with cancer, and so we should be talking more about it, and we should find better ways to support that community, and funding, and treatment options, because mental health and financial support, because they're not getting anything right now. We haven't shifted in change, and I see the increase of pediatric cancer just keeps going up, and we're not intervening there. So there's a lot of those kinds of conversations are happening with students to prepare them of, like, this is the reality, and then this is how we have to manage. You have to be with those families and work with them, and then we need time to process it too. We can't just shove it down, and we have to let it out as well, so that we can continue to do this with other families. No, it makes a lot of sense, and like, I think in the very beginning I mentioned that I had never seen a tear shed from our child life specialists up until that last point, as well as our social worker that we had become very close with, and this was during the time still, it was in 2021, where everybody was still in mass, so I didn't know what anybody's faces look like above their nose, or below their nose, and for the first time when we got, there's, you know, this is what's going on, there's nothing more we can do. That's when I saw the tears, and I also saw them excuse themselves politely from the room and not stay in there, but to me, I mean, I look at it and say, that's just proofs that you're real people, not robots that just do this, and just, you know, we're not patient numbers. We're people with names, and with families, and with lives outside of this hospital, outside of this medical facility, whatever, and to be able to see us as that, and not as just number whatever is on the door, is huge, and I'm okay with the breaking down, because to be honest with you, like I said, that means that you're real, and that you can see us as something other than just a job that you showed up to today. Yeah, no, you, I think that's a huge thing too, for childy specialists, we don't ever look at people as like a case number, or you treat them like, well, this is just like, no, they're all individual, and you treat them with your whole heart. Definitely times, I know for my work that I've experienced those really hard moments, and I have definitely gotten tearied, and then just kind of hold it together, and then, you know, usually having a breakdown later on, or when I finally have gotten the news that the person has died, or showing up to their funeral, going to a funeral service, and it's just like the floodgates have opened, because you've been containing it for so long, and just like sobbing. And knowing it's okay, like, it's okay, the families have seen me, they know that this is why I love them so much, and I think about them all the time, that we do have hearts, and we do feel, and they make when I tell you that like all of these families make a footprint in our heart, they do. Like, I feel like it's like all tattooed in here, every single one of them, I have my little collection of all my things, I have all my core memories, and I look at life very differently, because of all of these incredible souls that have changed my life, and have allowed me to come into their lives during the most crucial times, like what an honor, like truly what an honor that is, like that takes over a paycheck, like that is such an honorable thing to be able to come into during crisis and families allow you into their home, and see them at their worst, and you get to have that, like that is such a vulnerable space that we really cherish, and yeah, like I just, I say it all the time, like I love, I love my families, I love all the families I serve, and I think about them all the time, and I continue to honor all of those souls too, and the work that I continue to do. I love all of that, and it's honestly right now, it's actually kind of hard for me, like I feel like I want to just, I want to break down and let the floodgates open, because I'm kind of going back and thinking about all these times, being in the hospital, being a part of all of this and being immersed in this child life field, and all of the people that were surrounding her, and made our life bearable in those moments, and so it's making me want to be really emotional, and I'm trying to, I'm trying to hold it in too, so I can break down later, but it's, it definitely is really, it's really great to hear how much you truly care about what you do, because I think it really, it's just, it's the kind of the poster child of what this field is, and what people need to see. They're like I said, there needs to be commercials, there needs to be, you know, hospitals that are expanding these services, so that the people that are coming in are not missing out on internships and practicums and volunteer opportunities, and they're able to come in, because they want to be there to help, they want to be the, a part of this, and it shouldn't be lack of administrative wants, or it shouldn't be lack of budget, or lack of size, that's stopping this from happening, it's that slowing an entire field down, an industry that really needs to be embraced, so I'm hoping, you know, and maybe I just have to get louder about this, about this topic too, but I really hope that it becomes something that, that explodes, because that is, it's such a necessity, you know, obviously every single day, you know, we send care packages out, that's what we do, that's the way we give back as well, and we know that's a small piece of the puzzle with what we do, but an important piece of the puzzle that nobody talks about, and much like, you know, child life, yes, you are hearing more and more about it now, and if anytime I bring it up in an episode, people say yes, Alton, let me tell you about my child life, specialist, because they were incredible, we all know about it, but the world needs to know more about it, and it's, you know, now I have to add that to my life's work, because it is, it's such an incredible thing that I don't know how families get through it out, because you're meeting people that again, are there for you, and not for the money, not for the patient number, no, they're there for you, as a JC, we're coming in to see you today, we're so glad to see you today, they know your name, they know what you like, they know the types of things that make you happy, that make you smile, they know if you're having a bad day and you just don't want to talk, and they know when to back off, or whatever, they grow a relationship with you, and it truly is an amazing thing, so from my point, from my family, from our community in general, I just want to personally thank you as the entire child life field for what you do, because I think I don't know if there's a better job out there, I don't know that I could do it honestly, and I think that's why I think it's so important and special, because it takes that special person, in angel, if you will, to be able to do it. That's so much gratitude hearing that, thank you. I think I could say, you know, for all of us who are in the field, that we do what we do love it, and I love that you say to that there should be changes, because you have an army of people who want to do this, they want to, and they would be incredible at it, we have to be able to get them into it, it needs to be easier, and then once they're in it, we need to take care of them, so we can continue to expand it and grow it, but the ones who know it are the families who have experienced it, and they once they experience it, they're like, this has changed my life, we need to provide this for more families, we need to advocate for more, and then sometimes we get some really incredible medical team members under our belt, or social workers, or nurses, and they are right there with us cheering us on, especially to the administrators, and saying like, hey, things need to change, because we need to expand. You want better patient satisfaction surveys, and you want to see, you're more money. We need to shift, we need to do better on taking care of our child, especially in bringing in more students to give them the training, and the experience and education, so that they can continue to grow this field. 100%, 100%, and I think that's going to be, that'll be definitely something that, with everything, no matter what I've got going on, that is going to be a part of the conversation now, more so than it ever has been, is that this is something that needs to change, honestly, and our whole organization is about change, and is about progress, and is about hope, and I think if we bring all that together, not only for what our cause is, in general, is to bring it together for a group of people that make this life bearable for us when we're going through things. I don't think there's a better thing that we could advocate for, but that's just me, and I think it's a lot of other people too, that feel that way, and I think the support
or is only going to continue to grow. So I will ask, is there anything that, I think I asked quite a few questions, even though I said I wasn't going to ask a whole lot of questions, but I did it anyway. Is there anything that, anything that I didn't cover or something that I missed that you want to share about the department or the field or yourself that maybe I didn't ask? - I think you nailed it. I mean, it's an honor to be able to be on a platform like this and share. So I thank you again for that and, you know, this experience and allowing us to continue to have the soapbox to talk about child life. That's also like why I created child life, mommy, I was like, I wanted a soapbox to kind of let people know about this field. And it's just continued. There is expansion. Like you see it happening. So things like this are going to help us kind of go in that, in that path of growth. Yeah, it's an honor. Thank you. I have lots of love to all the families continue to advocate and support the pediatric oncology population and to support the students and just our field in general and watching it continue to grow. - Excellent. And we will do everything we can. I guess this platform for me is a whole lot of kind of anti-social media because you can say what you want and not worry about, you know, censorship and anything like that. But I like the idea of a whole other avenue of, for people to be able to hear what you have to say. And this is, that's the whole point of starting this. It was to start with telling my own journey, but in our daughter's journey, but also allowing, you know, collaborating and hearing other stories because we are all one big team here, really at the same goal. And for us to come together like this is so important. And it, it's, I'm honored to have your, you know, yourself on here talking about this and sharing more about the child life field and about your work within it. And everybody that I speak to it is so incredible because it's, you may not be a voice that you've heard before. And now you're hearing that. And I think that's the key here, the more we spread awareness, the more we talk about it, the more we talk about whatever topic we have for the day, the better chance we have that that one person's gonna hear it. And honestly, that's all it takes to have a steam role effect. So where can't you have, you have a website that I'll have you tell me, so where can people find you or have more information about you or even contact you if they have questions? - Yeah, so like I said in the beginning, child life mommy was a blog at the time. It's really kind of shifted. So it's just my website and the name child life mommy has stuck. So I am childlifemommy.com, even though my kids are teenagers and they do not call me mommy anymore, they call me bro, but I am, that you can, they are big kids now. When I started it, they were babies, they were little. I was a mommy. Now I'm child life, bro. So childlifemommy.com, you can find me on all social media platforms. It's all the handles child life mommy. Gmail,
[email protected], like it's pretty simple to find it. I have a lot of resources on there for grief support. I'm in the process of finishing up a huge oncology resource, like a guide book that will have access to everybody's out there, all these organizations and nonprofits and categories for what they're providing, whether it's financial aid or research or care packages. So that'll be done shortly and on there, but lots of other information and I have lots of posts on how to talk to your kids about, different illnesses, how to prepare them for things. And it's just a site where it still has a lot of that blog part from the past, but we've reinvented it. So just have like a place of having gathering more information and just getting access to communicating if you need to get support from me. If you're interested in speaker agreements, like anything like that, students, and type of child life work, it's all on there and childlifemommy.com. Excellent. Well, I appreciate that you spent the time with me today and I hope everybody visits the website and kind of gets a better in depth look that you can kind of sit down and read at your own pace and reach out if you have questions. It is definitely something that needs that vision and needs that the eyes on it and hopefully one day will be in the position where nobody has ever turned away from a field that they love so much and that they want to be a part of. And that's what we hope to be at. So thank you so much for spending the day with me. I appreciate it and everybody make sure that you check out the website, childlifemommy.com and from here on out. Again, thank you so much. Thank you. I really appreciate your time as well. Absolutely. And we will see everybody else next week. (dramatic music) (dramatic music)
PodcastTranscript AI