Editor’s note: The following interview was with members of the the Family Relations Committe for Dance Marathon: Addison Duda, Anna Brady, and Riley Schmitz
What does your committee do for the families?
Duda: Our committee puts on events throughout the year for the families, so in the fall and the spring we have one event and a Christmas event. In the fall, we do the hoedown, and then for winter we have the the Christmas party. In the spring we try to mix it up and try to do something inclusive for all the kids. We’ve done ice-skating, bowling and a zoo party with the biology department. Schmitz: The goal of our committee is to make things inclusive for all their medical needs; all the children should be able to participate. We also work to make the marathon itself very inclusive to them. We have a room upstairs with sensory boxes and crafts for them to do, so we can help make the marathon more enjoyable to the families. Brady: We will also, throughout the year, reach out to the families and get together with them individually, whether that’s for frozen yogurt, to study, to babysit if the kids are older, or bring them to the Dow to play basketball. We also try to make it inclusive to whatever the kid can do and just try to make a relationship with the kid.
How do you select families?
Schmitz: A lot of the families have been around for way longer than we ever have, but the families we’ve added we’ve met in different ways; there are high school marathons; we’ve met families there and then recruited them to come speak at our marathon made them official miracle families. We have a hospital liaison, who will get to know a family really well at the hospital, and she’ll send them our way. Sometimes it’s just random and people will email us. Brady: It can also be connections from people at Hope who know people who’d love to be involved. So there are a lot of areas that they come from.
What is your process or planning Dance Marathon?
Duda: We just try to cater to the families as much as we can.We try to do whatever we can to make it comfortable for them, taking the highlight off of what they do at the hospital and putting it more on just them being normal humans. Whatever time we have with them, we try to make it as enjoyable as it can be.
Are there any difficulties you face during this process?
Duda: I wouldn’t say any difficulties; it just gets busy sometimes. Schmitz: We’ve had years and years to perfect what our roles do. When I first started on the Dream Team, a lot of the things we did weren’t all-inclusive or didn’t really cater to everyone. For example, we didn’t have headphones, so there would be little kids running through this crazy tunnel at the beginning, and that was just way too much. Then the marathon itself wasn’t very enjoyable. We’ve had enough time to work through all of those things. And of course there’s room for growth, and we can keep making our marathon better, but a lot of the difficulties with inclusion are being addressed.
In terms of making things more inclusive, do you have any future plans you would like to put into action?
Schmitz: One thing that’s been our goal for a few years, and that’s changed particularly in the last few years, is that we’ve spoken to families after, and a lot of them said the marathon caused a lot of anxiety for the children. They were reliving some of the worst times of their lives, in front of a thousand college kids. They didn’t appreciate us showing videos and photos and talking about their medical conditions in front of everybody, so we’ve really worked to highlight the children and who they are as people, trying to completely steer away from anything medically related. I remember my freshman year, someone was talking about a miracle child and referred to her as “the one with this condition”, and I was caught off-guard. That’s what we know them by, even though that’s not a part of who they are. Brady: We will specifically tell our committee “don’t bring up anything that’s related to their sickness or illness. They’re just kids. They just want to have fun.” Now we have kids like Jillian, and Jillian loves hotdogs, so we really emphasize the fun facts about them. We’ll put up a slide for each kid, and it’ll say “this is when her birthday is; this is her favorite color, etc.,” just emphasizing the fun facts because they are just kids. They’re not identified by the sickness that they have; they are truly just kids who want to have fun.
What is something you have learned throughout this process?
Brady: One cool thing is just seeing the joy that these kids and families have and the strength that they carry, which is really inspiring and gives me perspective. Like this week I’m so stressed, but I keep telling myself “I don’t have a disease or a sickness that keeps me in a hospital like all our miracle kiddos have.” That’s something to take away, putting it into perspective of what’s going on. Duda: Something I’ve learned is that there are multiple ways to serve people. I think my life was just in one direction when I came to Hope, and I had this idea of what I wanted to do and how I wanted to do things. This entire journey that I’ve been on with Dance Marathon these last three years has taught me that there are multiple ways that you can help others and be there for others. Schmitz: I’ve really realized that loving people really well is a huge sacrifice, and something I know a lot of Dream Team people have been reflecting on recently is, as this team, we’ve gone through some really difficult things. We lost a miracle child last year and had to communicate that with the campus while honoring his family. There have been so many heartbreaking situations like funerals and waiting in hospital rooms. That’s just part of it, part of loving them well, and the power in that is so worth it. We see the power of having a positive voice and the power of having people fighting with them. It just makes all of it very worth it.
What do you think and hope that families take out of this experience?
Brady: I think they take away a really positive experience because of the way that we’ve altered the marathon to fit their needs and their kids’ needs. I think they just see this as a good positive thing, and we’ve had parents tell us that this is the event that their kid looks forward to all year. So I think we just want it to be one of those high-on-life experiences where you have so much fun and where you’re gaining these relationships with us, with our Dream Team and with community members. So I think they get an awesome experience, and that’s what we want to gain. Duda: I hope that the families understand that there’s someone there who cares about their wellbeing. Honestly, I want to be lifelong friends with them. I feel like I’ve know them well enough that they’re a part of my life, and I would want to come back and communicate with them. So I really hope that that’s what they got as well. Schmitz: I think when families first join, or if they haven’t been to a marathon before, at the end there is not a dry eye in the house – everybody’s crying, and the families are overcome by what they’re seeing. I just don’t even know how to describe what the end of the marathon feels like; it’s just unbelievable. I think there is power in doing unreasonable things for each other. When we raise this amount of money that is unreasonable that this small school can make this much money. It is such a miracle that we raise that money, and the families know it. They see one thousand college students choose to stand on their feet for 24 hours. They see how much they mean to this whole campus, when they realize the sacrifice. These students could have chosen to be anywhere, but they were standing on their feet in a weird gym for 24 hours. I hope what sticks with them is how unreasonable it all is, how crazy it all is. It’s to show them how much we care. I hope what they get out of this is that they have a huge community that cares about them.