Notes and Mentions
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Serena: Hey Everyone, I’m Serena.
Tina: And I’m Tina and we are the Mental Health Mamas.
Serena: Welcome to No Need to Explain, we are so glad you’re here.
Tina: First, as always, a quick disclaimer.
Serena: We come to you NOT as mental health professionals or experts in the field, but rather as the parents of kids who struggle with their emotional health.
Tina: If you or someone you love is experiencing a mental health crisis, please seek professional support. You’ll find a variety of resources in our show notes and on our website, NoNeedToExplainPodcast.com.
Serena: We know from experience that when our kids struggle in any way…
Tina: That we, as the parents, struggle as well.
Serena: Right. And I’m using the term “struggle” in a very general way. So while Tina and I often talk about mental health struggles, we know that there are many different ways our kids might struggle.
Tina: Yes, exactly. It could be challenges in school, developmental delays, physical health challenges...the list goes on. Today’s episode is going to focus on having a child with a life-threatening condition. We know this is a very heavy topic and we are so grateful to have a guest here with us today who is on a mission to bring happiness, healing and one of our favorite words, hope, to the thousands of families raising a child with a life-threatening condition.
Serena: Oyauma Garrison is the President and CEO of A Kid Again, Inc. which is a non-profit organization that provides ongoing adventures for kids facing life-threatening conditions. Prior to his work at A Kid Again, he worked as an insurance company executive for more than 20 years for several organizations including State Farm, Nationwide, Allstate and Jacobson. He is also the father of three teenagers who are 19, 16 and 14. Oyauma, welcome to the podcast!
Oyauma: Absolutely delighted to be here. Thank you for having me.
Tina: We are honored to have you. So let’s jump right in and talk about what brought you to A Kid Again. I can imagine it must have been a big shift from the, kind of, private-sector corporate world to running a non-profit. So, what inspired you to make this change?
Oyauma: You know, first and foremost, let me just say, I can’t thank the two of you enough for really pressing forward on this incredibly important topic when it comes to mental health and mental health issues in general and I will tell you that as much as I have been a fan, an advocate, an ambassador in the nonprofit world by volunteering, providing my own financial resources to propel all kinds of opportunities forwards, this has been one of those areas that we are trying to shine more of a light on to ensure people go out and get the proper help they need. And we all know this, right? And candidly and very transparently, this really wasn’t my world when I was a part of the corporate environment. I was very much a corporate climber and driven by all the things that the private sector offered and it wasn’t until October the first of 2016 where my world changed. And it changed in an instant. And that moment is what led me on a path and a journey and on this course in which I wanted to pursue a bigger calling and that is to be able to give back.
And so I’ll pause here really quick and insert exactly what happened on October the first in a very condensed version and that is we have three kids and my oldest, who at the time was 14 years of age, happened to be a cheerleader for the local high school. My wife dropped her off at the football game, it was for the Freshman football team, so that my daughter could be part of the squad and help cheer on the team. She came back, picked up myself and our two sons to go back so we could support our daughter and certainly support the team. By the time we had gotten back to the stadium, we noticed that our daughter was sitting off on the side and we naturally went over to check in on her. She said she wasn’t feeling too well. She asked the coach if she could sit out a few routines, they said yes and so we didn’t think too much more about it because she said that she was feeling a little bit better and we went up to the stands and sat. And my daughter being the team player she is, when the squad got back up to go and do the next cheer, she stood up to join that squad and the minute she stood up, she suddenly collapsed. She hit the ground face first and I’ll express the rest of it except to say they rushed her down to Nationwide Children’s Hospital and when we got there, if you’ve ever had to take your child to the emergency room, you know how scary of a place that can be even when you think you know what’s going on. And in this case, we had no idea what was going on.
The emergency room literally went from two people to three people to five people to twenty plus people because in the matter of 30 minutes, the healthcare professionals as they examined our daughter said that her veins were collapsing, they were having the trouble to find one in order to put an IV in and decided that they needed to intubate her in order to just kind of maintain oxygen flow and everything else. Scared us a bit but we didn’t think too much about it and as we’re in this room, the head of the ER instructs us to follow the practitioners down to the CT scan room because that’s where they wanted to scan our daughter because she hit her head. They wanted to rule out a concussion. By the time my wife and I got down to the CT scan room, they had radioed down, cancelled the scan and in that exact moment my wife, and you all as Mamas know this, her motherly intuition kicked in and she went running back to the room. I went running in right behind her and no sooner than a few seconds after we got there, our daughter had coded on the table. I mean she went flatline, no heartbeat. Scary moment. And in that instant we were thinking to ourselves, we didn’t wake up this morning thinking we would have to bury our daughter. That wasn’t the thought that came across our mind.
But what I will tell you is that the amazing team there, and I’m sparing a lot of the other details, but the amazing team there went quickly into reaction mode. For about ten minutes, my daughter went without a heartbeat. And they finally got her back.
And what we’ve learned is that she went into septic shock which means there was some level of an infection and when you go into sepsis or have sepsis and go into septic shock, you have a one out of two survival rate. That’s it. It’s 50/50. And so to make a long story short, we spent three weeks in the PICU and during that period of time, almost half of it, my daughter was completely unconscious. She had no idea what was going on. When she woke up finally, when she came to, she thought it was just a night had gone by and it was days if not a week and a half had gone by.
And so I share all that to say that today she’s a healthy 19-year-old young lady but she’s a medical mystery and a medical miracle at the same time. But it was in that moment that I realized that, you know what? I’ve done a great job of trying to help a ton of people become extremely successful. I’ve helped make a lot of people really wealthy through all the work that I’ve done in the corporate world but there’s nothing that will ever take the place of your family. And it unfortunately took that moment to wake me up and push me in this direction to say, you’ve gotta do better and you need to do more good. And so in conversations with mentors I learned about this wonderful organization called A Kid Again that’s all about the entire family unit. Not just the child who is battling a life-threatening condition but the entire family unit. And why was that important? Because, remember, three kids. That means my youngest two sons felt like they were step children in some respects. They were cast aside because all of our attention was on our daughter.
And when I learned about this organization and what it is that they wanted to accomplish and expand this wonderful mission into so many more markets and to be able to provide hope, happiness and healing and smiles and memories for families and the community for these families, I said sign me up. I actually took a financial pay cut to join this organization, to help move it forward so that every day I wake up, I can live a simple four letter word and that’s good.
Tina: Well. And great I would say. A five letter word. But I would say, yeah, the universe comes knocking at our door in weird ways that we do not understand and awesome that you have really capitalized on that and you’re helping so many other people. Yeah.
Serena: Yeah. I really appreciate you sharing that with us and with our listeners and I can’t even imagine, as a parent, you know, that moment of change. And I hear your, sort of, that shift in perspective and how something like that just changes everything for us, right? So, shifting back here to what we mentioned at the beginning, that what we know to be true as parents is that when our kids struggle in any way, right, it’s the whole family who struggles as you mentioned your other kids. And at the same time, again I can’t begin to imagine what it would be like to be raising a child with a life-threatening condition. So I wonder if you could share a bit about the experiences of the families you serve and like what kind of challenges they face?
Oyauma: One of the things, as parents, that we have to make sure we stay in tune with is the health and wellbeing of our kids. Now imagine if your child is non-verbal. Imagine if your child is suffering from debilitating conditions. Imagine if your child has to navigate the world in a wheelchair or with a trach or with scars on their physical appearance or an appendage that might be slightly different in length and/or a physical appearance in comparison with others. Imagine all of that. And oftentimes, we as a society place these stigmas on these kids and on these families that make them feel different. And the wonderful thing about this organization is we understand that there is a mental aspect to navigating through all of these healthcare challenges so that we can help a family, the entire family, feel normal. To be able to feel like that child is gifted and not different. And so all of that plays into the challenges that our families face is insurmountable because for many of them it’s a financial burden in some respects. Because the average cost to raise a child battling a life-threatening condition can be anywhere from $400,000 to $600,000 dollars a year. That’s just the average claims paid. That doesn’t include the out of pocket. The stuff that’s not covered.
And then compound that with one of the experiences I had when I first joined the organization. It was about somewhere around six to nine months in. Someone told me, they said, hey listen Oyauma, this is like when you’re out driving on the highway and someone says, spot the orange car. You really don’t notice the color of the cars until someone asks you to look for them. In some cases, people like us, we may not always pay too much attention to what I like to call the kids who are normal but have gifted abilities in whatever case those may be. And I can recall them also saying, but you know there are some people in our society, that when they see our children, they stop and they ask questions which sometimes they don’t know the impact of those questions. You know, they ask stuff like, what’s wrong with your child? Why does your child look like that? And I can recall being at the zoo and actually seeing some people who were not affiliated with our organization and were just passing through and exiting out of the zoo who stopped and started to take pictures. And I can hear them asking each other, I wonder what’s wrong with that kid. Those are the kinds of things that have an impact, not just on the child, but imagine if you’re the sibling of that child and you constantly have to hear other people talking about your loved one.
Those are the things that our families face and this past year, this pandemic, the PPE shortages, all those things. That compounded the impact of the challenges they face. But what I will tell you is, they are some of the most resilient and strong families I’ve ever encountered because boy do they know how to weather the storm.
Tina: It’s kind of amazing, right? So tell us a little bit, you talk about the zoo, tell us a little bit about some of the adventures that the families might experience. And perhaps share some of your favorite stories from some of those adventures.
Oyauma: You know, in the midst of all of this there’s nothing greater than when you can laugh a little, you can smile a little, you can create wonderful memories and you can just purely have fun. When was the last time any of us got together as adults and simply just colored? Took out the Crayolas and started coloring? We actually did that as one of our adventures and I will tell you it was one of our most popular adventures where we actually broke out crayons and people had a chance to color with the kids. We brought in some college students to also participate in it. We actually broke out, believe it or not, board games, right? No electronics. Just regular board games. And we all know Monopoly can take forever. It was so wonderful to see the kids engage in all of that. So those are some of the more simple things that we do that the families love because they get to bond around it.
We take them to local sporting events because for many of them, they can’t afford to be able to do this on their own. We take them to the local arcades and putt-putt. We love taking them to the zoo. Believe it or not most zoos in America, they love to have our kids come and have that dedicated time because they get a chance to interact with the animals and they get to feel normal because they’re there with hundreds, if not thousands of what we like to say, their closest friends that look just like them.
We have a great partnership with Cedar Fair that owns a number of amusement parks across our great nation and they offer up the opportunities for our families to come and just experience their parks and just have a blast.
So we do all those kinds of things but I gotta tell you when, in my first year, there’s a kid that we have. His name is Evan and he is connected to a number of breathing instruments and so he can’t be off of his breathing equipment for very long, usually about 20 to 25 minutes tops. And so I can remember we were at a local arcade place that’s called Magic Mountain here and while we were there there’s all these people lined up and they’re ready to go get on the go-carts so they can race around the track and just have themselves a wonderful time. We had a Nascar driver who came out just because he wanted to be a part of this experience and help put smiles on kids faces. And you know what he did? He got in the car with some of the kids and drove them around on the race track. How exciting was that?!
Tina: Amazing! Wow!
Oyauma: For Evan it took 10 minutes. And talk about people having an extreme amount of understanding, compassion and patience. It took 10 minutes for them to be able to get him disconnected from his equipment, get him into his portable and get him into the car with the Nascar driver. And I gotta tell you, as he went around that track, all you could hear was his peers, his friends, his family from A Kid Again, just applauding because that just gave us all the chills. Because those are the moments that these kids remember with the smiles on their faces and we love it.
Serena: Mmm. That is...that is amazing. So I want to just talk for a moment about one of the things you mentioned. And you talked about the parents connecting with one another and certainly it is something that Tina and I have experienced over and over again when we connect with other families who have similar struggles. There’s a real bonding between people who don’t even know each other. I wonder what that’s like for the parents in your...who are experiencing your adventures. Do they connect with one another?
Oyauma: You know, one of our founders told me, he said, what you’re gonna find is, the power of not only hope, but the power of this community because a lot of families tend to happen organically and he was absolutely right. What I witnessed at so many of our adventures is while the kids are off in safe environments and they’re playing and they’re having themselves a good time, guess what Mom and Dad or whoever the caregivers happen to be...guess what they’re doing. They’re sitting down and breathing a sigh of relief for a moment because they know the kids are just having a ball and they’re sitting down at tables across from each other and they’re saying things like, hey listen, you know, we’ve been here a few different times and we’ve seen you at all of them and we hear you’ve been a part of this program for a very long time. Tell us how you’re keeping the marriage together. Tell us how you’re dealing with all the financial pressure associated with the medical bills and everything else that goes on. Help us understand how you’re balancing all the schedules because we’ve got three kids and we see that you’ve got five kids. How are you managing all of that? They are having these organic conversations and talking about it and then what they’re also doing is they’re referring each other to therapists. They’re referring each other to people who can help them navigate through whether it’s the financial challenges, whether it’s marital, whether it’s personal, whether it’s mental, whatever the case is. And they’re also asking each other for help for their kids who aren’t battling the life threatening conditions because, guess what, the siblings are going through this right along with the parents and right along with the kid and oftentimes they can feel neglected. And in that case, neglected kids tend to act out a little bit more and so we want to find avenues for them to feel included. And when they come to adventures with A Kid Again, they feel included.
Serena: So how might a family apply to the program or get matched with an adventure? How does that work?
Oyauma: So the great thing about all this that I mention and everything that we do at A Kid Again, it is cost free and care free for all families. We have wonderful partners who help donate resources to help make all of this come to light for them. We only have two very simple criteria and our process is pretty much automated. As simply as a family can go out and visit our website at www.akidagain.org and simply apply online if they have access. They can apply online, fill out all the information and as long as their child has a diagnosis that is life-threatening and can be validated either by their physician or one of the physicians that works on our advisory board and as long as they’re under the age of 20, those two very simple criteria, they’re a part of the A Kid Again family. And they get to participate in the adventures. And how it works is, in most of our markets, we can put on adventures whether it be once a month or once a quarter or several times throughout the year, the families get to choose as many and as often as they want. The types of adventures they want to attend for as long as they are with us. And that could be for the next year, 20 years, whatever the case may be. And the beautiful thing about that is, the reason we designed it as such, is we know that sometimes medical needs pop up, appointments pop up, the need to go in for surgery or other type of care and we never want a child to miss out and say that they couldn’t experience simply because.
Tina: Mmhm. Yeah, that’s awesome. Excellent. I can imagine that COVID has created extra challenges for your families and you’ve talked a little bit about that already so I’m curious. You did...it was very interesting when you talked about how the rest of us struggled with, you know, the kind of isolation that your people feel all the time.
Oyauma: When it came to everything that happened in 2020, let’s just face it, everybody is running. The families that are a part of the world for not only A Kid Again, but similar type organizations be it a focus on cancer, whatever the case may be. We at A Kid Again are condition agnostic. We accept all types of conditions. What we’ve come to learn is that we’ve got children who have been in the hospital for weeks, months and sometimes years. And they can’t leave that hospital. They can’t leave that room. And there becomes this feeling of isolation where you’re, in essence, shut off from the rest of the world. Think about how important it is sometimes to be able to just simply hug another loved one. And there’s so many grandparents out there that didn’t get the opportunity to hug a grandchild for over a year and some of them never got that opportunity because they may have passed away from COVID. And so I share that to say that our families have experienced this. Many of them well before COVID even hit. Because they had to self-isolate in some cases whether it was before they had to go in for surgery or whatever the case may be or if they’re already in the hospital. But what I’ll tell you is that they built a level of toughness and resilience around it.
What COVID has done is it has exposed the way that some of our people in our society live on a daily basis. And I got feedback from folks saying, I now get it. I get exactly how your families feel because boy, I was cooped up for literally just a few weeks and a few weeks in I was already itching to try to get back out and interact with people. I can’t imagine having to go an entire year or two or three in a hospital and not be able to interact with anyone except for the healthcare givers.
So that’s the world that some of our families experience. But that’s the world that now we know people in general have experienced and can now understand this level of mental toughness and fortitude, but also the vulnerabilities that come along with that.
Serena: Yeah. Hmm. Yeah. So hopefully we’re all building a little more empathy for one another. So we like to ask all of our guests about their take on self-care or however you like to refer to it...renewal. You hold a LOT of things for a lot of people. So we’re curious, how is it that you fill your own cup?
Oyauma: You know when you’re a father of three, you’re a husband, you’re a friend to many, you're a brother, you’re a son, you’re a community advocate, you’re a leader...all of those things can collide. And on occasion they do. And we are human. We are vulnerable. We are no different than anyone else and I will tell you that even for me, you know, there was moments of struggle and challenge because the last thing you want to have to think about is the loss of a loved one and we were faced with that and so many other challenges that come along with it. When my daughter was in the hospital our sons were just trying to figure out how they could even express themselves to share their love and support for their sister. And so they dug deep down into their hearts and came up with creative ways. And one of them bought her a teddy bear and the other one some socks so that way they could keep her feet warm while she was in the hospital. She still sleeps with that teddy bear till this day and still has those socks. But that’s the bond that siblings have.
And so for myself and for my wife, one of the things that I do is I enjoy running. That’s my therapy. It’s a chance to just get out there, burn the energy, have a little bit of me time and reflect and to think through things. But I am also, you know...I’ll share this. Sometimes it’s tough for us as fathers, as dads, as men to just sit down and talk with other people and express ourselves and our feelings and our emotions and the things that we’re going through because we think, oh my gosh, that’s a sign of weakness. No it’s not. It’s nowhere near being a sign of weakness and I know I’m preaching to the choir here but at the end of the day this is an opportunity for us to make sure that we are doing OK. I have a friend who said, you know what, we should always check in on each other before the check engine light turns on.
Tina: Mmhmm. I love that. Yeah. And I love that you, as a man, because we’re women, of course, that you as a man can say, hey, listen here, you all need help because I think it’s easy for us to say that. I think it’s super important. We’ve had other Dads on before to say, you know, it’s important that we all take care of each other. We all have needs, right? And especially those of us who help others to be resilient. And you are certainly an amazing leader who is doing, you say good, but I say great, in the world. We wonder, in your miracle world, what is in the future for A Kid Again?
Oyauma: You know, I like to keep things really simple. I know people would love to put all types of numbers and things around it. I just simply like to say, we want to deliver more smiles and create more memories for more families across our great nation and candidly, across this entire globe that we’re on because that’s the power and the impact. It’s hope, it’s happiness and healing and we’ll know we’ve done a good level of service and work when more of those families can feel appreciation, can feel valued, and can continue to grow and reach in some level of harmony around all of this. So that’s the future of A Kid Again. We’re going to reach more families across this nation and this globe.
Serena: Yeah, so I’ll just interject this here before we wrap things up. I wonder, is there anything we haven’t asked you today that you want to put out there to the world? Anything you’d like to add?
Oyauma: Yeah, you know, just really quick. And that is when it comes to mental health issues, we often try to cast these things aside. We cast self-doubt on each other. I know again, I’m preaching to the choir, but there’s so many challenges that exist out there and it’s easy for us to say that it’s an isolated incident or it was induced by trauma or whatever the case may be. Let’s just face the facts. There’s a lot going on out there. Some people are born with opportunities that need to be addressed and others it may be induced by trauma. We also know that when it comes to men that oftentimes we are probably of the fewer who actually step up and step in to this opportunity for some level of care. And I’ll take it one step further and that’s to say, even in the African American community and the Hispanic Latino community, oftentimes it’s deemed a stigma and very few people will tend to go out and get the necessary care that they need to ensure that they can live a very viable life. And so all I can do is implore people to just pause for a moment, not only think about yourself, but think about the casting of the shadow you have upon those you love. And if you love them deeply, love yourself and get some help.
Tina: Mmm. And your choir will chime in and say we take care of our physical health and part of staying healthy is taking care of your whole self, right? Mental health is a super important part of that. Yeah, so, thank you for that.
Serena: Yeah. Thank you. Thank you so much for joining us today, sharing all of the awesome things that A Kid Again is doing and for sharing some of your own struggles and you know, letting us kind of have a glimpse into your personal life as well.
Tina: Yes, and we’re so grateful that your daughter is currently well and that your family is able to give some of your time to the rest of the world. So, thank you so much. You are such a gift to the families you serve and we are so grateful.
Oyauma: Well thank you for all that you are doing with Mental Health Mamas, absolutely needed and you’ve got a fan in me and a champion in me.
Tina: Thank you. And so podcast friends, we are, as always, grateful to all of you for listening and supporting us. You can help us out by visiting Apple podcasts, leave a review, and subscribe. Tell others about us. We’d be happy to connect with anyone who needs to hear our voice. So you can find more content on our website, NoNeedtoExplainPodcast.com.
Serena: And this is your gentle reminder to take good care of yourself while you are also taking care of your people.
Tina: Thanks so much for listening!