Gift of Hope and Maddog Strong

Hello and welcome to the Gifted Life Podcast where we have conversations about organ tissue and ideonation. Thanks for listening guys. I'm Lori Steele. And I'm Sarah Boudreau.

And I'm Sarah Boudreau. Remember you can always find us at thegiftedlife.org on the program today. We'll be telling you about Mad Dog Strong, how one family is transformed tragedy and to hope for others. And we're going to talk about how anger can mask shame.

Ooh, okay, we'll delve into that right here. The Gifted Life, you guys ready? Mmm. There we go.

Hi everybody here on the Gifted Life. We are excited, right? Yes we are. So we're in this room.

We've been talking about this amazing hero and there are so many supporters that are joining us now by phone. And our goal is to work together to make life happen. You listening there, you are part of our team. So I'm going to start with Kevin Smond.

Hey Kevin. Good afternoon. Hey Kevin is with Gift of Hope in Illinois. We appreciate you joining us.

We appreciate your sharing your families with us. This is about learning, sharing information. And so we just really appreciate you guys. But tell us your role at the Gift of Hope and what you guys want to do there.

Sure. I'm the CEO, President and CEO of Gift of Hope. And I've been here about seven and a half years. And I think we're, we've come to a slightly different place than most of our colleagues around the country in that we've moved from kind of the dual advocacy of advocating for both our recipients and our donor families to really being almost entirely focused on our donor families under a kind of united under a banner of donation benefits, our families in ways that are just as incredible if not more incredible than the way we benefit our recipients and our recipient families.

So I'm the Chief Storyteller and the Head of Culture. That's what I do. I love that. And so I've been knowing Kevin, to me, Kevin's one of the Kevin's.

And I'll say that jokingly because there's a few Kevin's that have come to know and meet and admire who are CEOs of a number of different. I want to say there are five of you guys, four or five CEOs. The rule is if you don't have at least three Kevin's on a committee, you don't really have a committee. And I think in Kevin Bacon now, so if you know him, let us know.

So Kevin talked a little bit about dual advocacy, just to kind of elaborate for those of you out there. You know, one thing that we try to do in the organ donation world, in the OPL world, organ procurement world, is advocate for both sides, you know, advocate for donor families, of course, and then also advocate for those patients that are waiting for a life-saving organ. And that's something that we've done. We've kind of gone both ways focused a little more at times on donor families, focus a little more, you know, and I don't want to say as though we're taking away from either side, but focusing, making sure we bring stories in from the potential transplant recipient side.

So can you tell us a little bit about the paradigm shift or about the shift that you guys made, you know, overtly of going toward the donor family side as opposed to the dual advocacy? Yeah, the story starts a little over seven years ago, actually, next week it'll be seven years. We had a case of a young man who was tragically shot and killed and is home by a string bullet in east of Gary, Indiana. And it was just a case that really affected us because the family was so incredible and the circumstances were difficult and the timing of the year was such that it impacted us.

And so I decided to go to the memorial service. It was the first time I'd done it. I was a brand new CEO and I showed up for a memorial service in a very, very small church in a very, very poor section of Gary, Indiana. I was the only guy dressed in a suit and tie and I got into a long line of family and friends to get to the front of the church and pay my respects to the family and thank them for the generous gift they had given.

And when I got up to the front of the church, his mom was sitting in the front row. I leaned over and introduced myself. I'd never met the family and said I was from gift of hope and she jumped up and she gave me a huge hug and she turned to the rest of the family and she said, gift of hope is here. And the next thing I know I'm surrounded by people who are asking me about this young man's gift and how the recipients were doing and how many organs have been transplanted.

And you know, you get that kind of uncomfortable feeling when you're at a funeral and there's like 100 people behind you and there's that one guy who keeps talking to the family too long. I was that guy. And so I sat down in the church and waited for the service to start just kind of stunned. This wasn't what I expected.

I was going to thank them and yet they were so glad to see me and so welcoming of me. I found that fascinating and right before the service started, one of the young man's aunts came up and said, we'd like you to get up when it's time to eulogize my nephew and talk about it. And so I wound up speaking to a church full of 200 people, all family and friends about this young man's gift and the patients that were that were helped. And when I finished, everybody stood up and plotted.

And I walked out a changed person. And I made it a point over the years to attend services for all kinds of families. And it really I found it fascinating that it didn't matter whether they were families from very wealthy areas of our service area, very poor, black, white, Hispanic, didn't matter what religious background. I had a very similar experience.

I meet these families after the tragedy of their loss, after the victory of their donation and I meet them when they're looking to celebrate their gift. And it became obvious to me that the gift we were giving these families was as powerful as the gift we were giving the recipients. And so over the course of the years, it's really become a theme for us. And we've taken the telling that story in our hospitals with our caregivers to let them know how important donation can be for their families because they own these families as much as we do.

And we know that when they lose a patient, they turn to care for their family and they just don't have the time or the opportunity to do what we do for them. And so the powerful message and the powerful story, and I think it's been well received here. And the grab-myers are just another one of those families that I think prove the point that donation can be incredibly healing for these folks who've suffered unimaginable losses. Wow, that's a great story.

It inspired me. I love that. The grab-myer are with us as well here on the gift of life. Hi, guys.

Hi, Laurie. Thanks for having us. Now we are looking at the picture of this beautiful face. And on the picture, it says Mad Dog Strong.

This is your sweet, Maddie. Maddie, Mad Dog, Robmeyer. And we are all interested to learn more about this sweet face. Can you share?

Sure. Well, it's a bit of an unusual name. And the way it came about was when Maddie was a few weeks old, I would sit on the couch and I would hold her in my arms. And I would look at this tiny little precious baby.

And she looked so peaceful and calm. And then she let out a roar like a lion. And it was amazing. I mean, that such a loud voice could come from such a little child.

And so I remembered a picture, a baseball pitcher for the Chicago Cubs in Atlanta Braves called Greg, Mad Dog Maddie. And he was very unassuming, a big, thick class as he looked like a boy next to her. He was a hurlick. He could really throw the ball.

And I said, that was like Maddie. She's so unassuming. And then with the Maddie name, I called her Mad Dog. And then it kind of stuck.

And she went through gymnastics. And the name, let's just say she grew into that name. She was an inspired, happy, going for that brass ring kind of gal. Oh, I love the dad store.

I love that dad bond. I love that. So mom, that's dad. Tell us your version.

I just picked up on the moniker of Mad Dog and carried with it. But like Frank said, she definitely grew into that name. Maddie was a competitive gymnast. And she started gymnastics in a mommy and me class when she wasn't even two years old.

And the reason why was because her older sister, who was 16 and a half months older than her, I had her in the gymnastics class. And so I had to do something with Maddie because she just jumped off of everything and signed on everything. And she definitely needed someplace to channel her energy. So we started her in a mommy and me class at two.

And then by the time she was three, one of the coaches had told me a sign said, oh, we're going to look at her for teen. I went to three. Really? And sure enough, when she was not even six years old, they actually invited her to be on teen.

And then that became that really shaped who she was. She ended up, which is something unusual around here in Illinois. There's a gymnastics gym just about it in every town. And it's really unusual for a gymnast to stay with the same gym her entire life.

And Maddie did. She graduated from high school at competing for the same gym that she competed with her entire life. And in fact, her head coach, Jim Frederickson, who was like a second dad to her, was in the hospital with us the entire time and was actually with us through Maddie's all the way through until after she came out of her her donation surgery and was there with us to say goodbye to her. So if that doesn't tell you how important gymnastics was to who she was, that's it.

Oh, he was there. She was growing up. I love that. So you talked about donation.

We know that she is a hero, but talk to us about the conversation or how that became part of your family and the yes. So about three months before Maddie went passed away from her asthma attack. She was involved in a really serious rollover car accident actually on the one mile drive from high school to the gym with two of her teammates. And they all miraculously walked away with just bumps and bruises and scratches and pretty serious mental starring.

But it prompted her about two or three weeks later to sit her dad and I down and to tell us that she would find a female organ donor when she got her driver's license. And that she wanted us to know that that accident kind of scared her a little bit and that if anything like that ever happened again and the outcome wasn't as good that she wanted us to make sure that we knew that she wanted to be an organ donor and that we would honor that decision. And so what we found was in those moments in the hospital when we got the brain death diagnosis and we actually were probably an unusual family from what we've been told in that we immediately asked for the OPO to come speak with us. They didn't even have to approach us.

We requested them and we knew in that moment that we had to honor that decision and that clarity in knowing that really helped us in those moments because we didn't have to go through the gosh, what should we do? Should we, you know, should be honored? Because she wasn't when she actually first thought filled with her asthma attack, she was still 17. So they were requiring us to get consent.

So that clarity really helped us. And so, you know, our hope would be that no other family ever has to go through what we've been through, but we would hope that if a parent ever has to be in the situation that we're in that they can have that same clarity because it was really a gift to us in those moments. I actually do approach families and I just wanted to reiterate what you said. It is very rare for families to be thinking of others in those in the worst days of their lives.

So I just wanted to thank you and your husband and also Maddie because, you know, we hear of those experiences where people have near death experiences and they don't think about their life. They think about their life. And so for Maddie to do that, that's a testament to her and y'all that y'all wanted to honor that and that you sat down and had those important conversations. So I just wanted to say thank you.

Thank you. So when she comes to you, she's about to turn 18, start her life. She wants to talk about donation. Was this a shock?

How is it received? Was this something that you guys had already talked about as adults between husband and wife? But when your child comes to, tell us about that moment? Well, honestly, it was at the time when she brought it up.

I said, this is morbid. I don't want to talk about this. This is not something we talk about. You know, this is, you know, I don't want to think about anything tragic happening to you.

So, and I give her all the credit. She demanded that we listen. She's mad dog strong dad. Yeah.

She absolutely was mad dog strong. And that's why, you know, we hear all the time people say, gosh, you're so strong for what you're trying to do and promote organ donation. And I said, that is Maddie. We would be disrespecting her if we didn't, you know, weren't strong and going out there and trying to do this.

This was her thing. This has become our thing. But this was her thing. She was always giving and always caring for others.

She was an adaptive PE leader in high school, working with special needs kids. She volunteered for conservation organizations, trying to get young people outdoors and hunting and fishing. And she was always about inspiring others. And in the gym, she was a leader.

She won the leadership award two times. So this was her. We're just carrying on her legacy. I love that, her legacy.

And that's what I want to talk about now. So, she's an amazing thing. She's a hero. She saved lives through donation.

And then you guys decided, because this all happened how long ago. I've been just over eight months. Just over eight months. And so it's an incredible story.

The timeline seems fast from my perspective. But you guys want to shout her story. And I just love that. And it's the Mad Dog Strong Foundation.

So tell us how that got started, what you're trying to do with that, and how Maddie's legacy continues. Well, Frank and I are in a unique position that we kind of have the skill set to be able to tell Maddie's story, both of us are, frankly, the marketing communications consultant. And I work in higher ed in communication. And so we're very lucky in that we have the skills to be able to do what we're doing with Maddie's story.

But it was fairly quickly after Maddie passed that we really wanted to help promote organization. And like I said, part of it was because we firsthand saw how much it helped us heal and cope with something that made absolutely no sense. At least it gave us some semblance of maybe there is a purpose for this. And maybe this will help us recognize that purpose.

And so it started as our motto is don't just check the box to have a conversation. So we really formed it around the idea of, like I said, making sure that if other families are put in that same position that we were put in, that they have the clarity to know what their child's decision was in terms of being an organ donor. And perhaps even why they made that decision. I think there's a lot of stigmatization around talking about organ donation.

You know, everybody's in favor of it. But we don't like to talk about it. And I think it's really, really important that we do have those conversations. And so the foundation has really just kind of moved forward from there in terms of trying to make sure that people are talking about it with their families.

So if they are converted, put in that position that they have the clarity and the strength that they need to honor the decision of their loved one. And once you did have that conversation with you guys and going back, how long of a conversation was that we have families that said it was just 10 seconds. They were in line to get their license or if we were watching the show and it was about a minute. Do you guys remember the duration, how that went?

It was very brief. It was a brief conversation. And like I said, I didn't even want to have the conversation with her, but she insisted and it didn't take long. It was very simple, but it did provide us incredible clarity just like organ donation has provided us a very healing opportunity, an opportunity to heal.

And it was a very brief conversation. So what we're finding is that it's not just helping us heal. We're seeing it in a lot of Maddie's friends and her peers and the rest of our family, including our older daughter, that being able to talk about Maddie as being a donor makes it easier for people to talk about Maddie. You know, when people lose a child, it's an awkwardness when people approach you and want to talk with you.

And what we found is that people aren't quite as awkward with us and they're more willing to share stories about Maddie. And for us, that's very cathartic and very healing being able to talk about her and talk about her in a positive light and have people looking upon her as the hero has definitely helped us in terms of our grief journey, definitely. I love listening to you guys talk about her. Thanks for sharing her story.

The Mad Dog Strong Foundation, I want to tell people how to get in touch and follow. But what is your hope? I know that it's newer, but moving forward, you have goals set, you have a mission. Like what is your hope for the Mad Dog Strong Foundation?

Our hope is that we can continue to build a sustainable organization that can go out there and move the needle on ordinate donation. We're focused mainly on teens and young adults. Our goal is to make this and not a taboo subject, something that can be talked about. We want to help these teens and young adults figure out conversation starters that they can bring this up to their family and how they can have this quick but important conversation.

We want to move the needle in terms of registration. If we want to get more people registered to be organ donors, it's something we're building long term. We're hoping to educate as many people we can primarily the teens and young adults on the ordinate donation. So, Frank and I guess Frank and Kevin are either.

So are you guys partnering up, is Madder Strong Foundation partnering up with Gifthaf Hope and going into these high schools or civic organizations and things to educate teens? Yeah, we were late to the game as a state. We just passed our 16-17 year old registration bill two years ago, three years ago, I guess it was two years ago. And the state doesn't have any kind of program to educate students.

And so the grad Myers with their skillset have been unbelievable in helping develop a curriculum and our goal is to get it into every high school to get 16-17 year olds in particular, a chance to learn about organ donation more than just a two minute conversation with a 10 second conversation we have at the DMV. But really to get them educated about it so they'll have a conversation with their family and registered to be donors. And the grad Myers are kind of our tip of the spear because they're the ones who are really driving this process and hopefully over the next few years we'll have our network of volunteers and every high school in the state. Well, with that passion, I bet that you will.

Yeah, absolutely. And for our listeners who are wanting to learn more about the Mad Dog Foundation, where can we send them? Our website is www.maddogsstrong.com. That's M-A-D-D-O-G-S-T-R-O-N-G dot org.

And we're also on social media, Facebook, Instagram, Twitter. You can find us there as well. And I'm looking at this sweet picture that stamped with Mad Dog Strong. Do you have a story behind that picture?

She's holding someone's hand. She's smiling. So sweet. Honestly, we found that picture after she had passed and had never seen it.

And it was on her phone. I don't know where that picture came from. I think it was possibly at Lala Palooza the summer before. But we reached out to her friends and none of them are quite sure who's hand.

She's holding an out picture. So it's a mystery. But I think it tells a story. Like I was like, oh, I bet you they did that.

Just come with us. Join us. That's exactly the picture. It seemed very prophetic when I found it on her phone.

And it just seemed to fit with what had happened. So yeah, absolutely. Like most teens are aged. She probably had 10,000 pictures on her phone.

So to go through them and find that one. That really stood out to us. There's a great one. There's plenty of pictures.

Very close. Frank and Cindy, I have a question for you guys. And it's about the recipients, about her recipients. Are you guys?

I know it's obviously not been a very long period of time. So I'm assuming you guys haven't met anyone. But is it your intention at some point to meet any of the recipients and or their families? Yes, we would absolutely love to do that.

We did actually hear, we got it received a letter from a young girl who had received one of Maddy's kidneys. And we received that within just about two months after Maddy had passed, which from what we've been told is very unusual. And it was very ironic because she said she's been on dialysis for years and all she wanted to do was travel. And now this gives her the opportunity to travel.

And that was what Maddy wanted to do. Maddy wanted to travel. She loved traveling and she wanted to see the world. So that was really amazing.

But yes, we are hoping to meet our recipients, Maddy's recipients someday. We, my little cousin, who is now six when he was not quite two, ended up having two liver transplants the first week I was lost in about three days before Thanksgiving. And I think that may have also been part of what inspired Maddy, but he met his donors family a few years ago. And that was really, really meaningful for them.

I love that. Thanks here on the podcast. We talk about folks teaming together to make a difference. We're on the same team.

We're trying to make life happen. And we just love that you guys have joined us today to share your story. We hope that it's shared. Everyone who's listening, please do this.

Kevin Frank, Cindy, thanks for joining us here on the Get to Life podcast today. And thanks for sharing Maddy with all of us. Thank you. And thank you for being a mad dog star.

Okay. Right now here on the podcast, we're going to take a moment, everyone for mental health. Yeah. Sarah mentioned anger and shame early.

I don't see the connection. What? Tell me more, Sarah. Okay.

So today we're going to talk really about how anger can mask shame and probably more if we're going to really dive into it, it's for those like romantic relationships. So like with our partners and always listening. So the emotional ones, you more emotionally tired. Yes.

The ones you have more intimacy with. This is probably where it'll hit a little bit harder. I'm nervous. Is that normal?

Okay. So really we'll start with what is shame and shame honestly is just a negative self evaluation of ourselves. So we're judging ourselves. That's exactly right.

And it can manifest itself differently. So when you're in those intimate relationships and you feel criticized by someone, your immediate response can be anger because you feel judged. But really what it is is, you're judging yourself and you don't want your intimate partner to see that shame. So you mask the shame by responding that way.

They can't see it. Right. Right. And we've all done it where someone that little nerve is hit and we immediately are defensive and angry.

And instead what we can do is be really, really assertive in our communication and say, this is why that made me feel shame or reminded me of the shame I feel. And so that's why I responded that way. And I mean, we all don't want to be criticized, especially by the people we're sharing our lives with. But when we take that away and when we recognize these are the things that make me judge myself, it really can open up to a better communication style with your partner and can make you feel less shame too, because we're all our biggest critic, right?

I think at that moment though, my communication skills are silent. That's my power. Yeah. And a lot of people use that silent treatment, right?

And that's okay for now to collect yourself. You know, take a moment to be silent. That's okay. But when you come back, I'm thinking, like, what am I going to say next?

Is it going to be good and positive? And I think that's really smart that you do that instead of just responding right away because you're evaluating yourself. So is your silence like a pause or is it like a long silence? It depends on what's going on, Joe.

I'm like, I'm going to do this. I'm like, you're not eating. And we're not going to talk about it until tomorrow. That's okay.

You need your own moment to sometimes just feel angry or to feel, but recognize it. Take that moment and say, why did I feel angry? And a lot of times it's going to go deeper because anger is that feeling and that emotion? That's hiding something else.

So in order to build a better, you know, intimate relationship that's more vulnerable and connecting better, you have to take a hard look at yourself sometimes, which is difficult. But if you do that, it can, those times when you do feel criticized or judged, it won't escalate as quickly if you just do that work. Yeah. All right.

And I can talk about it clearly. Then here's what I was feeling. Right. Yes.

So we'll talk about this tomorrow. I like that. Thanks, Sarah. Maybe on topic you want Sarah to cover info at the gift of life.org we'd love to hear from you.

In every episode of the gift of life podcast, we honor a hero. On this segment, you learned a little bit about Maddie. Now we learn more. Maddie Groemeyer started taking gymnastics classes at the age of two.

And by the time she was six, she was competing. She achieved level 10 status and planned to continue competing at the collegiate level at the University of Wisconsin lacrosse. The Mad Dog Strong Foundation was created in the spirit of Maddie, Mad Dog Gromire, who passed away unexpectedly from an asthma attack the day after her 18th birthday. Maddie inspired many by donating her organs and tissues so that others could live on to do amazing things for the world.

Only three months before she died, Maddie miraculously walked away with just a few bumps and bruises from a very serious car accident. That accident inspired her to sit down and have a conversation with her parents about organ donation. If something like this ever happens to me again and I don't make it, she said, promise me that you'll donate my organs so that something good can come from the tragedy. On June 30, 2019, Frank and Cindy Groemire respected Maddie's wishes, fulfilling her charitable and selfless requests to be an organ donor.

By creating the Mad Dog Strong Foundation, the Groemire family plans to continue telling Mad Dog Story, inspiring other teams to have that conversation about organanitiation donation. And now we pause and say thank you to Maddie, Mad Dog, for the gift of life. And our question and answer segment today, I have a donor card, but it's so old, it's falling apart. Can your organization send another?

I'm sorry, what's a donor card? You don't know what a donor card is? No. I don't really know either.

It's a similar. Surprisingly or not so surprisingly, it is very old and it's falling apart. So way back in my day, a few years ago, that's basically the only way we had to communicate that you were a donor. You signed, of course I did go to the OMB or the DMV, but then you also filled out this little donor card and you kept it in your wallet.

And we actually were able to put, if we wanted, heart donated or lungs. Not that we knew any difference, but that's just the way it was and you kept it in your wallet. And that way, if something would happen, the LOPA back then or the organ procurement organization, you'd be able to pull it and see that, oh yes, this person did want to donate and did want to donate heart, not lungs, yes, the kidneys and things like that. Well, as with everything, it used to be paper tracking, right?

And you talk about your reports even and having trouble deciphering that doctor's script. Right. That's going on. But as with everything, technology has come into our lives and hopefully improved for the better.

So it's a lot of electronic tracking. So you'll hear our community educators not only here in Louisiana, but across the country saying go online and register, right? Even the OMB, so everything's kind of tracked online. So from your iPhone, Sarah, you were talking about the health app that you can do.

So there's really no need for that donor card, but still the need for you to talk to your family about your wishes. And that is our ask, right? And if you know someone that isn't registered to be an organ tissue and I don't or you can do so with the National Registry, register me.org. It's that simple.

And we ask that you do that today. So essentially there is no more donor cards. But when you go to the DMV and you say yes to whether you want to be an organ tissue and I don't, they put that hard on your license. So that's kind of replacing the donor card, right?

Yeah. So there's going to be a mark in Louisiana. It's that Red Heart and we love to see those Red Heart and we love to see the numbers rise because people are understanding about donation. But essentially, you are carrying that card from your license.

Great. Yeah. Nice. All right.

Well, great question. If you all have any more questions for us, please give us a call at 504-648-3477. And that friends is episode 131 of the Gifted Life Powerful. Yes, it was.

We thank Kevin Smut, the CEO and President of Gifted Hope for coming on and sharing the grow minds with us, sharing Frank and Cindy. And then of course, for them to share Maddie with us was amazing. I have to say, you know, so many times we're trying to drive initiatives and I say we as in the organ, you know, LOPA and the OPOs. But to see how just how instrumental Frank and Cindy are to drive the youth initiative there and to know that that's what it's going to take to make that change.

We've been trying to make those changes for quite some time, but to have the passion of the donor family behind you. I love listening to them. Tell us about Maddie. I love that.

I'll listen to them all day. So I'm curious to see how they move forward and I want to have them back here on the Gifted Life. So we do thank them. And thank you guys for listening.

Hopefully we inspired you to register as an organization I don't know if you haven't already. Register me.org. That's easy. One stop shop for you.

And remember the best place to find us is at our website, the GiftedLife.org. You can listen to us there or anywhere you listen to your podcasts, whether it's Apple, Google or Spotify. And if you listen on Apple, please give us a five star rating and subscribe so that others can find us. If you're on social media, like our page on Facebook, the GiftedLife podcast and follow us on both Twitter and Instagram at GiftedLifePod.

One more ask you guys. We want you to go out and do something you would normally do to help us make life happen. It's a team effort. We appreciate you and we'll talk to you next time.

This is a production of LOPA, or the Louisiana Organ Procurement Agency. The GiftedLife is hosted by Lori Steele, Joey Buudro and Sarah Blakemore, our executive producer at Kirsten Heis, producer Ishelon Caraway. Intern is Rebecca Rannam and we are recorded, engineered and mixed. In our Covington, Louisiana studio by Troy Perez.