#30 Terri Tomoff: Capturing Hope and Inspiration Through Adversity
Sometimes, you read a book and the lessons stay with you long after you’ve finished the book. That’s what happened for me after I read Terri Tomoff’s book The Focused Fight-A Childhood Cancer Journey: From Mayhem to Miracles. I had the honor of watching this book unfold last year. Terri and I were in the writing in community group through Akimbo where we wrote daily and shared blurbs, plus offered each other encouragement. No one offered more hope and encouragement than Terri, which will not surprise you after you listen to this conversation.
We started with her history of going behind the iron curtain as a teenager to win two races in the Polish Olympics. Terri has continued to be an athlete through her life – and her “all things are possible” mindset helped carry her through the battles of her son Ryan’s 5 battles with cancer, including 3 occurrences of leukemia.
When you listen to the conversation, you will quickly realize that this is a story of leadership at its very essence. Terri not only understands how to receive help, which is my definition of leadership, she also knows how to give it. And boy, does she know how to rally resources. Terri’s shares many of her philosophies in this conversation. Creating a team is number one. She also shares some of the finer points of delegation and how she manages to be optimistic and find the blessings in the most dire of circumstances.
Her stories inspired me and I think you will be inspired as well. The book is a gift to anyone who has been handed more than they think they can handle – and it’s a gift to those who want to be better able to recognize their blessings. I will tell you this – Terri Tomoff is the kind of person you want on your team, and she’s allowed us the chance to experience her hope and inspiration through this book. And stay tuned, she is blogging regularly and writing another book about Manufacturing Sunshine.
Transcripts are Auto-Generated
Intro:
Welcome to Creative spirits unleashed, where we talk about the dilemmas of balancing work and life. And now, here's your host, Lynn Carnes.
Lynn:
Welcome to the creative spirits unleash Podcast. I'm Lynn Carnes, your host. For this episode, I am speaking with Terri Tomoff the author of the recently published book, The focused fight a childhood cancer journey from Mayhem, to miracles. I had the honor of watching this book unfold last year, Terry and I were in the writing and community group through a Kimbo where we wrote daily shared blurbs offered each other encouragement. Just basically put ourselves in a situation where we had the accountability to write every day. Now, I'll tell you this, no one offered more hope or encouragement than Terry. And that's not going to surprise you after you listen to this conversation. We started with her history of going behind the Iron Curtain as a teenager to win two races in the Polish Olympics. She explains this in the podcast. And I think it's one of those things that helped her build her strength for what was yet to come. She has continued to be an athlete throughout her life. And you know her all things are possible mindset has helped carry her through the battles with her son, Ryan's five battles with cancer, including three occurrences of leukemia when he was just a young boy, when you listen to this conversation, you're going to quickly realize that this is actually a story of leadership at its very essence. Terry not only understands how to receive help, which is my definition of the core of leadership. But she also knows how to give it and boy does she know how to rally resources. Terry shares several really many of her philosophies in this conversation, including what it means to be on a team, how to delegate, especially when you don't have a lot of opportunity for control and how she manages to be optimistic and find the blessings in even the most dire of circumstances, there are so many insights that we uncovered, about how she's done what she's done in this conversation. And of course, her book describes a lot of this as well, but it's so nice to hear it from her directly. You know, her stories inspired me and I think you will be inspired as well. The book is a gift to anyone who's been handed more than you think you can handle. It's also a gift to somebody who just wants to be able to recognize their blessings. I will tell you this, Terry Tom off is the kind of person you want to have on your team. And she's allowed us the chance to experience her hope and inspiration through this book, through her blogs, and even her upcoming book. So just a little bit about Terry and what she has to say about herself. This is what her her about page says on her website. Thank you kindly for pushing the about page button. So and she spells that as CW and you'll see why in a minute. Let me tell you a little bit about myself. I am a helpless cheerleader for life and love. I can tell you that I love being a wife and a mother of two grown children. They are the wind beneath my wings, My heart soars when I'm with them. Some of my life's cheerleading could be as simple as a phone call or staying by someone side not even talking who's going through a rough patch. I believe in the power of a handwritten note and the power of chocolate chip cookies. Sometimes I may be waving those two big color pom poms with my hands up in the air celebrating my milestones, accomplishments or a new life also known as baby or grandbaby with family and friends and a handmade quilt. I was bitten by the travel bug photography to in my youth and I've yet I've never met a stranger. Life for me is being creative every day after a morning run, walk or a Walk Run. More, more the latter. Three decades of quilting and sewing have woven tight friendships in my guild and bees. In my own business of custom made t shirt quilts. I have a love of fabric that is hard to explain. I'm tactile behind the average gal. Over the last two decades, I've learned the ropes of advocacy and found compassion I never knew I had with cancer patients in my life near and far, including my own son. So that's Terry Terry's bio read in my voice. But I think you're going to love this conversation and I want to hear what you like about this, this conversation as well. You can go to my podcast page on my website, click the send a voicemail button on the right hand side. It's super easy to do and it allows me to share your notes and voices with my podcast guests as well as myself. And of course if you enjoy this place, either consider subscribing to the podcast if you haven't already, or share it with your friends, family, colleagues, anybody you think will find something good out of here. I promise you there will be a lot of good To hear out of here. So please do enjoy this podcast. With Terry Tom. Terry, welcome to the podcast.
Terri:
Good morning, Lynn. Great to be here. And I'm honored to be part of this podcast, you have no idea. Oh,
Lynn:
you have no idea how honored I am to have you here. And as we were preparing, I discovered something about you after I don't even know how many times we've been on calls together talking about our books, and we're going to get to your book. But I've got on your website, and you have this very cool little place or piece that says, Thanks, you might not know about me. And these are, this is a little bit like in the A lot of times we will play a game. Getting corporate people together will play two truths and a lie or something like that. And you'll say these things. You know, I don't know if you've ever heard of that. Yeah. But you you would you would be really fun to play that game. I had no I knew you were an athlete. I didn't know you were an Olympic athlete.
Terri:
Not Olympic as Yeah, we can it was tell me what that was. So I have a Polish background. I'm 100% polish. And my coach went on a summer track program with her name is Stella Walsh. And she ran under the Polish flag and she was an Olympic athlete, the true Olympics. But Polish Olympic Games are for people with Polish descent living around the world. So I was a decent runner and high school and so I got invited to the Krakow Polish Olympic games do still a Walsh. So it was competing against other Polish people around the world, right? That came to Krakow in 1977, which was behind the Iron Curtain. So there were people that there was issues of getting some people from communist countries into Poland, everything else, but it was still a wonderful experience for me.
Lynn:
Well, it's okay. So let's be clear. You said you were a two time gold medalist. So you were just a sort of good runner is what you said.
Terri:
I ran 100 meter dash and the 400 meter dash at the time. Unreal. Yeah, I know. It was crazy. And I was 15. So that was just, it was just wild. It was my first trip
Lynn:
abroad. A 15 year old going behind the Iron Curtain. Yep. What?
Terri:
How the heck that was? Yeah. That was very life altering for me. I went with my aunt. Mary was my chaperone, my dad, sister, older sister, and we had relatives we still keep in contact with relatives and Ostroff mozzie. Viet ska, which is near the Russian border, so about an hour and 15 minutes east of Warsaw, so Cracow for nothing. So anyway, we still keep in contact and there was a lot of I had a lot of questions, and very few answers because they kept giving me the shoe and putting their finger. They didn't know if their house was bad or people were listening in the Windows or whatever, because I had so many questions. My aunt was trying to be very nice and she spoke fluent polish I didn't, I was immersed into the program, basically just by virtue of being there. And towards the end of the trip, I really understood a lot more Quint speak it as is eloquently of course is an you know someone else but just getting there. But I really enjoyed my time and it was different. I saw some different things even in the airport. When I was leaving, I end up buying a leather jacket from their town. And they were not sure I would get through customs with it. So they had me put on a windbreaker, I had a windbreaker. And I zipped it all the way up while I get to the airport or go into the carousel. And there were German officers and Polish officers there in the airport, in Warsaw, and they had a German Shepherd sniff me up one side and down another and German Shepherd just jumped onto my chest and I had to be cool cucumber. Can you imagine a 15 year old girl and you have a big German Shepherd sniffing me. I know. But that was my welcoming and my exiting out of a nation that was under Communist regime. That was just one little incident. There were other things they they really tried to roll out the red carpet and in Krakow, which were the games. They were very nice and accommodating and welcoming. Of course, that's how they want you to whatever, you know,
Lynn:
that's the propaganda to show you exactly
Terri:
right. Yep. But behind the scenes with my family there that we we saw the different things and even go into Treblinka, which is a concentration camp that was only about 10 kilometers from their house. And I really liked going there, because it was just very, it was out of this world kind of a thing. And it's not marked. The Polish people have taken out all the German markers. So it's not marketed people from all over the world find it and come there and they pray and they walk the grounds. It's sacred ground. And I really thought that was a cool feature. I know Believe it or not, versus the other camps that have, you know, millions of visitors each year like Auschwitz and cow and so forth. Yeah.
Lynn:
Wow. Yeah. So the thing. There's so much we're going to get to your book, but I know I actually, I, as I read so so just for those listening, Teri has her book, The focused fight describes her son's winning battle with cancer over over 20 years. Yeah. Five times her, her approach to that. And what I'm curious about is where did your approach come from? Because what struck me as I read your book, and what is striking me as I'm talking to you right now about going behind the Iron Curtain to run in the teen Olympics for Poland? Was the matter of fact, way you approach challenges.
Terri:
Yeah, I guess. So I understand where that came from. I don't know. I think, personally, I tried to do a team approach. Pretty much everything I do. So I was part of a team USA contingency, but met people when I went out there. But when I got married, it was a team approach. We entered our marriage as a team, team members. And so we were more united. So to get through Ryan's cancer, and also as a runner, and then eventually move it up into the marathon and my husband's a long distance runner, and he's right, run, dozen or so marathons. We paced ourselves. So we had to learn how to pace ourselves. We learned the team approach. So we were united front on everything. And rarely did we disagree on things. We have different approaches how we approached the cancer and getting through. He's an introvert, I'm extrovert, he's an identical twin. I have sisters and girlfriends that got me through. But that was how we were able to and when Ryan relapsed on the third time I remember his doctor saying to us, you need to lean on other people. You can't lean on each other anymore, you're going to break your bond. So we really took that to heart, although she doesn't remember saying that. But I tell people that that you sometimes can't if you have a strong marriage, and you want to keep it that way. Maybe you have to lean on other people when you're going through some traumatic, life changing things happening in your life, which a child with cancer is going to do it to you especially after a couple of relapses.
Lynn:
For what you Yeah, went through.
Terri:
It was it was relentless. It was relentless, relentless, relentless, and people who are reading the book right now. And people who we've known for all our lives are coming back to us and saying, I never knew you. You live through that relentlessness, that craziness. I said, Well, if I told you everything, would you call me back? No, I was. And we want to hear about what other people are going on with their lives. And we want to hear about the goodness and other people's lives. I think that was another thing. Focusing on forget about focusing on us. We wanted to hear about other people's we want to hear about good things that were happening people's lives. I think that set us apart. And we were just trying to get the pity, so to speak, up for our situation, because we were interested in everybody else to as they're raising their children.
Lynn:
Well, okay, so the Okay, so we got to dive in on this. Because you I think a lot of people maybe me included, I'd like to feel like I could have showed it could show up the way you did. But I can't say that I would have I think a lot of people would have wanted a lot more pity a lot more. And there's a difference between pity and help. Yeah. Right. Yes. But would have felt really out of out of control, helpless help true, helpless victim type thing. But you just said something. And I caught this in your book. You said I was open to hearing other people's good things. And then there was also a time when you also helped people in your book. So you tell a story about a young child who was going through I think this was when you were doing the bone marrow transplant and he wasn't going to make it and you ran through the hospital to be by his side with his parents. In his last moments. Yes. Which was you offering help to them, which you also show in the book was something that gave you some sort of peace and strength, which I found just remarkable. So can you say a little bit about that? Because being open to helping and being open to hear about good things, I think is a natural response to this kind of difficulty.
Terri:
Yes. So we knew the family from a couple different places, but mostly at the Duke University when Ryan was getting his transplant and I knew he was this young boy was not doing so well. And for For some reason we got to the clinic and Ryan was just getting blood and platelets that day. And we were gonna be there for a while because we were at their apartment and we had to go every day I had to draw blood labs and then an hour or two after they assess what he needed, then we would go back and so forth. But this particular day, I don't know something else moved me it was something I couldn't even explain. I got to the hospital. I dropped off my purse and our bag for the day and Ryan and said, Listen, I gotta go, I gotta go visit this young man. And he's, I'm yell, I'm walking, running down the hallway. And he's like, where are you going? To go? Are you running? Yeah, exactly. And I It was a cold day. So I had I know, I had my a down jacket, zipped up to my neck, and I was racing to the hospital. I was running. Actually, until I had to get to the elevator set of elevators, I get to the PICU. And I'm waving my arms at the side lights for the nurses to see me. And they were like looking at what what is she doing here? And I when they finally opened the doors for me, I walked through and I said I need to be with this young man's family. I need to be there. I was called to be here. by who? I don't know how your power. And as soon as I get in that room, I had sweat rolling down my back. I never unzipped my jacket. I didn't have time. And we all the young man's pastor and his wife or their parents and some nurses and a couple doctors and we all stood around his bed and we held hands to pastor lead Lord, the Lord's Prayer. We always probably there 15 or 20 minutes, it was the most powerful thing I've ever been part of and witnessed. And I have both parents have passed away and I've never been with any my parents. My mother died with COVID Oh have with dementia. Last summer. My father died 20 years ago, and I was here in Maryland. And I couldn't get there. So he was been my it's been my only experience with somebody and yet a child with cancer dying. And it was not until the nurses I need to clear have the room clear. Did we break from our bond? It was very powerful. I don't know if people have been with dying people. I know. They'll know what I feel. But being with this young man, his parents and the nurses and the doctors and his pastor, there was something electric in that room. And when the nurse in his in his dad said you can you can leave we're going to be okay, is when he finally took his last breath and let go. And that we're all going to be good standing until we meet again with you. So it was wow, it was just something else. And I'll never forget it.
Lynn:
While Terry that is almost I know making it where I can't talk.
Terri:
So I so I took my time as I you know I as I walked back I of course I was crying and all and i i took my time going down the corridors to get to back to the clinic, to Ryan. And he allowed me to just be quiet for the rest of the day. And we just set with minimal talking. And pretty much I think the doctors all knew what was going on upstairs because they're alerted with all the kids that are going through the program at Duke for the transplant program. So I'm sure they knew that he passed at some point throughout that morning and that afternoon. So it was very somber there. And Ryan let me and then we got home and we just had dinner and it was just a quiet night until we went to bed and we get up the next morning we we carried on but it was just a hard day. Ryan knew the young man, young boy. And so that was tough. And I think it just opened his eyes of Of course, he was 10 at the time, Ryan so he knew the possibilities what can happen. He knew that where the stakes were. Nothing was guaranteed. So well.
Lynn:
Nothing, nothing is guaranteed. No. And I think the sooner we actually come to realize that in our, in our lives, is the that's what the day we begin to live is the day we realize we're not going to live forever. Absolutely.
Terri:
And that's when you see my things. And I'm taking advantage of every opportunity and I'm adventurous and everything which I've always been. I don't leave no stone unturned. I can't.
Lynn:
Yeah. Because you know, exactly. But you know, I just know it. A lot of people would have seen that event as a sign of lack of hope. And somehow you saw the exact same event as a source of strength. Absolutely. And hope How do you do that?
Terri:
I don't know. Yeah, it was just something I think deep in my soul. I really believe it. Or somebody else is driving the boat. And I'm just a vessel trying to do the best I can. But you're the conduit. When you when you tune into some things. I think when you tune into that part of life, part of our brains You allow that coming in. And you allow that to develop. I think the sky's the limit what we can do and we can accomplish from well, deep inside of us. And that's for anything for business
Lynn:
open to it.
Terri:
You gotta be open to it yet business and education, anything, anyone that has high flying, they have some some epiphany somehow, some way they have to.
Lynn:
Well, you listen, you know, you were literally describing what I think of as being a conduit. Because you didn't run down that hall you opened to listen to the need to run down that hole to be there in that moment.
Terri:
Exactly. That's it? Yes. Because I could have thought it. I could have fought that thought, or that feeling that I had to be in that, you know, on a different part of the hospital. But I couldn't fight it. It was that strong. Wow, I know.
Lynn:
I've I've thought of that. I used to call it and I guess I maybe still do that little gray cloud. And it's that moment where I know something, but I don't know how I know it. And because I don't know how I know it. And because it's so subtle and faint. It's easy for me to deny it. So it's like, you should go so I can almost feel it. Like, you need to go there. I don't I'm then I like to go I should have gone there. Or I should have looked more I should have listened. Why didn't I listen? Because I was being guided? Yeah, by like you said whatever that is, and I think we're you know, a lot of people would put a religious frame on what we're talking about, but I think I'm I'm feeling that you're talking more about a spiritual frame. Absolutely.
Terri:
It's a spiritual thing. Yes. i It doesn't matter what religion you're from, or whatever. It's it's a spirit. The spirituality is heightened. Yes, definitely. But I was gonna go back to your point when you said about the the whispers and you know, by doing things and finding that need to do something, it's that same a dash or whatever, when there's a when you have to when you weren't into your house because you forgot your purse, you forgot something. But if you would have gone a minute sooner, it would have been a car in a car crash. It's that kind of a thing. It's a I equate that with what sometimes what happens when you allow that things to happen? Or don't go Wait, now, you get this. Oprah Winfrey used to say when don't let the brick wall fall, listen to the whispers when we listen to the whispers. I think we can manage our lives pretty well. It's when you let that when you quell those whispers, you let that brick wall fall down. That's when things happen. You got to really take a look at your life a little harder. Maybe take a harder look at it.
Lynn:
Oh, yeah, cuz, you know, I have I had a friend that used to say, you know, it's really not too smart. If you hit your head against the brick wall three times, two times is bad enough, but three times means you really listening. Exactly. So. So how did you develop the ability to hear like that?
Terri:
I think my mom, my mom had a really she was very spiritual. She was also religious too. But I think her spirituality she she was very powerful. It was very powerful for her to listen to that. Even though I tried to fight it, you know, because you don't want to be like your mom, right?
Lynn:
If it comes from our mom, exactly. So that's
Terri:
like, but there's some times you cannot fight it. Some of the stuff is just so strong. Like that example, about me being without young man, that it was so strong, I could not avoid it. I could not let the whispers just fall down. I had to take advantage of that. That opportunity. And I had no idea. I didn't know he was going to pass away. And 10 minutes I was there. But for some reason. I needed to be there. And I was glad I was and I still I haven't seen that family or taught or spoken to them since that day. They kind of move down with their lives. But I wish them I wish them well. And I'm hoping that's
Lynn:
that's Oh, I know you do. And I know that's interestingly enough you giving away that kind of care is one of the things that came it came back to you full circle, I feel like Yes. Throughout your book, that theme I just kept seeing. Yes, yes. What that was one there was there's a lot of really amazing things that were happening in your book, but that's one of them that that helping others actually provided help for you. This idea of being on a team creating a team approach. Yeah, building a team. Yes. The The other thing I loved at the beginning of your book, and I think this is if if nope, if people don't take anything else out of this conversation that you and I are having, it is the poem you put in front of your book about Welcome to Holland. Yeah. Why did you put that in the front of the book, say a little bit about what it is because you can describe it better than I can but what made you choose to use that because it really sets the context for who you are and how you and your family sure fought the battle. Yes. Well,
Terri:
one of my childhood friends marry her mom, Mrs. Irene parish, parish. And when Ryan was first diagnosed sent me this pole, and a minimal minimal graft or whatever it was back in the 90s. I don't know. Well, I guess it was printers. And she just printed this up for me. And I kept it and I read it the first time and I just folded it in force, just a regular piece of paper, and I carried it around with me. So any type tough moment, I was going to read this and I read it several 100 times I could prevalent I can recite it by memory, pretty much. And it was just a powerful is basically when you're going through a tough moment. And she describes Emily Pearl Qin Kingsley is the person who wrote the poem, and I knew I really wanted to include it and I reached out to her. And she gave me her blessing and her permission for me to put it in the book. And it basically talks about a child with disabilities and it you when you are having a child, you are preparing like you're going to Italy it's flashy, you have Michelangelo's date, you know, the Michelangelo's David, you've got the the Hot Rods, and it's just beautiful with all the things and Rome and Venice and Florence and so forth. But then the plane lands and the stewardess walks at works up in the pilot says, you know, Welcome to Holland and Holland, you're waiting to go to Italy, Italy, it has everything that I want. And everybody's bragging about they're coming in for going back and forth to Italy. But here I am in Holland. But Holland has two months and Hollinshead windmills and Holland has Rembrandt's. So it said a place with pestilence and famine and ugly things. It's just a different place. And they're gonna have to stay. And so you will never enjoy the gifts of Holland if you're always worried about going to Italy. So that's I'm in house. Yeah, so So what
Lynn:
do you got the news that your perfect two year old little boy?
Terri:
Yeah. had leukemia. Yes.
Lynn:
It he's not gonna it's not this is not going to be Italy. This is going to be Holland. And so here I am. We're going to do Holland. We're gonna do enjoy the tulips.
Terri:
We're gonna join in Rembrandt's You bet. And we continue to this day, enjoying the tulips, windmills, and Rembrandt's not the David's and the Michelangelo's and the piata and everything else that's in Italy. But yeah, it's a and you have to and then when you accept that space, I've had accepted space. And I can't keep every once in a while, I'll have that thought of what if. But I have to take that away? Because like, what if Brian didn't have the cancer and he would be six feet tall? And a you know, professional baseball player? I can't think that way. Right?
Lynn:
No, Nora, you know, if that was the other possibility, the other possibility could have been something worse.
Terri:
Exactly. So I can't think that way either. So I have to just play in the present moment. That's what I have, and enjoy the heck out of it. And be thankful and be in here blessed because I have what I have, you bet. I used to go into meetings in the schools that the IEP and the 504 meetings all the way through. And I remember sitting down with all the staff that was in the rooms, and I would say thank you for hosting me. And I'm thrilled I'm here. And I just want to say I'm thrilled and blessed them here, because there are so many parents that would love to be in my seat and their children in it make it. So let's start with that. And that put them back in their seats, of course, because here they're trying to not give you an IEP or not, you know that it's more work and more expense and everything. But when I say that, and I'm saying that sincerely. That changed the complexion of the entire meeting, is I realize this is a kid that he wants to be in school, he wants to learn. He's had cranial spinal radiation, excuse me, and chemotherapy, which limits a little bit some of the stuff like spatial reasoning, everything, but he wants to be here. He wants to be a good kid. He's going to listen and good and pay attention as much as he can. So please allow some of these accommodations. So that was that was so we started that meeting though with saying, Hey, I'm thrilled I'm here, because there's so many little freq people that have not made it that would love to hear. So that was that was like,
Lynn:
Yeah, well, that's the mama bear Terry showing up as an advocate. Yes, correct. Yeah. And there is, you know, when you're navigating a hospital environment, like you were navigating where you are the one person that is with him all the time. Yeah. And then they have to bring a team in but they are working for pay in shifts. Over the years, over years and years and years. You saw many people come and go Yeah, And you had to be an advocate. And one of the stories that really struck me was when his left arm was infected. And it was just a sheet brushing against it was excruciating and pain. And you, I'll let you pick up the story. But you had warned everybody you've done. You've done everything in your power to make sure that anybody coming through that door knew not to touch his left arm. Correct. And then what happened?
Terri:
Hmm. So not only did they know that, and the people, the rotating staff knowing that there was a big sign on the front door of his room and above his head, please don't do that. Don't touch his left arm. Don't do a pressure cuff there. Nothing. It's all off limits.
Lynn:
Yeah. Because they're coming in to do blood pressure. Absolutely. Yeah. On the right arm.
Terri:
And Ryan's position. Dr. Aziz Ashad was at the house. It was a Saturday. And she took her son's to a movie. She had three little boys at the time, or around the same ages as our kids. And she took them to a movie, but Ryan was having some issues and other kids were having issues on the floor. So she ended up getting a call, I think in a movie, but I hope God willing, I hope I never asked her if she finished listening to the movie. But I walked out to I walked out of Ryan's room to go I heard the elevator ping. And so I ran out because I figured that was her. She texted me or whatever. And met him at the elevator. So I just ran out of the room just for a second to meet the kids at the elevator because I knew she was going to be running to Ryan's room. In the meantime. And we're talking less than a minute here. I heard a blood curdling scream. And I knew somebody had had touched Ryan's arm or something, something or he brushed against something. And you could hear it three floors up three floors down. That's how bad it was. And it was a resident it was a third or fourth year resident, so they should know better third, fourth year resident. And she comes running out of there. And of course, Ryan's 10 years old. He said exactly what happened. And I approached her. And she blatantly lied to me. And I said, Well, we're going to take this up with your supervisor, you're the chief chief or your discipline, whatever she was in. And I am calling, I am calling and standing there. And I told exactly to the doctor that she was working under. And she I handed the phone to her and she lied. She blatantly lied. And I said you have to leave this floor right now. And I had Dr. Shuddh. Deal with it the rest of it because I had to walk away. Yeah. Because it was our bed. And she knew that she was, you know, a pretty deep trouble for something like that. And he even told her when she walked in the room because he she slipped in there when I walked away, which I never walk away. So that was a I don't know,
Lynn:
she should be able to leave the room for a minute. I agree. That was that was and your advocacy was on the door. It was over his head. Oh, absolutely. Like.
Terri:
And Dr. Shah was running behind me because I sprinted back to the room. And she was just coming out of that room when I approached it. And Ryan, of course, I had a console him Dr. Shawn walked out with the woman that was doing it said that. And I said I never want to see you back here again. I think I dropped a few bombs of not. Yeah, not like nice language. And I said, I don't think you should be on any of these children's rooms. I mean, I circled like, Wow, you got to get out, get off the floor. And I said
Lynn:
it's, you know, it's one thing to like, be ignorant and make a mistake. But like if she if she couldn't see the sign. And if she couldn't hear the patient, then something else was going on.
Terri:
Exactly. Exactly. And I and you responded, I
Lynn:
think appropriately given that she had had every chance it wasn't that case. Now I do want to say though, you know, we were talking about navigating hospitals. Yes. How many great nurses and doctors
Terri:
Oh, I wanted to talk about that. Oh, my gosh, fabulous. The Dave Ryan was diagnosed he coded blue. And oh my god. Oh, yeah. Oh, yeah, that was that was you know, cup was so we got to the we got to Georgetown at four o'clock in the afternoon. This is about 910 His eyes are rolling back in his head and a nurse just picked him up. I'll never forget her name, Carol. And she picked him up out of my arms. He had four IVs stuck in each limb. And she walked him down to the PICU and that was it. And then I heard this just like er the show Grey's Anatomy or he or whatever it was, it was perfectly written I could have it was just ran out of one of those shows. And people were running from all over to stabilize him because his platelets were dropping. They were 9000 We got the hospital. Okay. So yours is probably 150 to 300,000, he had 9000. So he's internally bleeding, right? So that was they had to stabilize them. And that was I think what was happening that like leukemia was Choo, choo, choo and up through all the platelets. And so your you know, your oxygen level goes down, it's just, it's just a whole, you know, blood ruins your whole body, it's not gonna present but she was awesome. It was for this, if it was for the staff. That's what we learned that from the very first day, how wonderful the staff was, that saved our child that night. It was a doctor's, it was nurses working in tandem working together trusting each other, we didn't have that trust built up at that point, just think day one, come on, we didn't have any trust built up, we had to just put our faith in the system, the entire system. And we had to go down and prove that we were Ryan's parents and pay get our parking passes and pay for this and make sure our insurance in the meantime of all this craziness going on. So the red tape that you have to do even though your son is having a child is having medical crises, you still had to go and present your medical cards and everything else that really, you know, brings you back to like whole, right? But I remember waking up the next morning and saying to Bill and I don't remember if I slept or not we might we slept on the wooden bench outside the PICU. Who knows? And how wonderful. We thought that the staff did an excellent job. Our son was here with us the next morning. And can you believe it? You know, we were just like, we were thrilled that he survived. And then because his protocols even start till Monday, this was a Thursday. So this was already Friday. We were into a we were into Friday now by this time. And then we met the doctor that took care of them and still does on Saturday. Because she was not on rotation for the weekend until Saturday morning. And yeah, so anyways, that was met, but we have met the most unbelievable caring, compassionate people, not only the nurses, but there are therapists and childlife, which actually I helped being on a board to bring all that into Georgetown, because that was not that was just gaining gaining credibility back in the 90s. Now it's a full fledge jobs. And you can get a master's in child life and art therapy, of
Lynn:
course, please describe what that is. So people
Terri:
have child therapy. So Child Life is actually they have an office right there on the floor. And they go into children's rooms with maybe some art projects, or to be with a patient or their family when they're going through a procedure the walk down the hall though, or they're like safer short term borders, which are kids who are going for a tonsillectomy or something smaller, getting a wrist repaired or something from an a sports injury. And so they will talk to the parents about what to expect. And then what that for the child would expect me they'll take a wheelchair and go down to where the O R 's are down to the MRI where the MRIs they indoctrinate the child and their parent of what's going to happen with them like in the next day or next two days, so to speak. So this indoctrination is a really good program. And then they they bring in meals. I mean, we had meal trains, they would organize that they organize other things on the floor, they try to keep everything kind of upbeat. So people are it's not doom and gloom, right. So they're, they're really usually young girls out of college, maybe you know, getting married, and they're full of energy and entertainment. And I'll bring entertainment, we had guys sing on a guitar playing the guitar, and they go to room to room. It's doing all those ancillary things for family centered care. Those are the buzzwords family centered care. Yeah. So you have a whole disciplinary team you have that your doctors and your nurses and your residents, and of course interns and medical students, because as a teaching hospital, a lot of the widows and then you have your pastoral care, and you have art therapy. And those are all the teams that are needed. Again, that team approach. I love that team approach. You know, I love that team approach. And so then then your child feels better and the child has a smile, guess what happens when your child smiles and maybe laughs That's medicine. That's the best medicine. You can't put a price tag on that. So then that bigot one thing begets another so they can get to those tough moments. Now Ryan had, you know, me and my husband and other people visiting and a pretty good team. But there are kids that we saw that didn't have that team so to have these folks in place in the hospital is beautiful. So I can't say enough about that. And we saw that it most of the the major hospitals and we've hit Ryan's been treated for major hospitals on the east coast. So seen it different ways, but all good. All great. All daily. Yes. Oh good. Yes, caring people, the most wonderful, caring people go into that.
Lynn:
So what I'm hearing you know, when I wrote the elegant pivot and I talked about assuming positive intent. I talk about a bundle of wires. Yes, where we may be facing 100 negative things, but somewhere in there is the positive wire, right? And your job is to find that elusive positive wire and touch that one. Yep. Because all the negative ones will just send negative to you, the positive one will send that positive to you. That's my very simple analogy. It is. And it's great. You just described what I'm talking about, not in terms of like positive intent. But in terms of finding that positive wire.
Terri:
We had to. Yeah, it was that every day you had
Lynn:
to you say you had to? And I know you didn't do it 100% of the time, because I know you're human. Yeah. But But you did it predominantly, and enough to make a difference. So to me, that's one of the question I was holding, when I was thinking about you, your experience you're being treated in four major hospitals on the East Coast, is, from a patient perspective. You know, how could all of us learn from you in terms of navigating the system? Because for most of us, at some point, even, you know, just riding horses, I ended up in the hospital for three days, falling off a horse, we're gonna end up having to interact with a hospital, or a loved one. I also did that with my dad, right? Or ourselves. Yeah. And it's useful to know how to handle or what to do. So you just gave us kind of a Master's class and how to find the positive. But what else would you tell people in navigating hospitals, that's just critical to know whether you're a patient or, or caring for the patient that you love being a parent, being a child, being your spouse? What would be your hips for handling hospital life?
Terri:
Well, the first thing I would do is believe in yourself, because there's so many things that you can't, you're not going to understand. But also putting faith in the system if you can. And if you have questions and hard questions that they may be, you continue down the path. And it's not what you say, it's how you say it. So you can't move around baton people around you have to unless things get really, really hairy. Then you got to put the gauntlet down. Yes. And that's how
Lynn:
you did that one story of adding somebody around, but that's not the way you are with it. No, no, no, no, that she she told you, that's what it was gonna take for her to hear. Yeah, exactly. Yeah, obviously wasn't hearing. So you man, what she did with the right energy?
Terri:
Yeah. It's like knowing and usually you you have, you know, your loved one well, so you know, what tics and you know, that's why good doctors will always listen to a mom with a child, because they know that mother knows that kid inside and out. So a good doctor will do that. And they'll know like two seconds off. Like when I when Ryan is eyes rolling back sometimes off, they jumped on it immediately. That was another thing. But typically, it doesn't matter what age your loved one is, that you're the voice and ears and eyes of that patient for everything else going forward. And if there's something that doesn't seem right, it probably is not. So you need to investigate that you can ask questions, you start with maybe your medical student and let it go up the chain, because they want you to go up the chain of command. And then if things get really hairy, you just say I really need to talk to the attending, I'd like to talk to the guy for some questions. Maybe they'll invite you to Grand Rounds, which is they stand outside your door with all the most up to Bodis scenary. Team. And you can be part of that if you want to. And you can hear more information about your patient, your loved one. And so that's always a good option to do. And most places will let you do that. And, and if it said a certain hour in the morning, that you're sleeping or whatever, they can come back and they can give you the 411 on what was said about that patient if you're interested. I also think taking notes, taking copious notes helped me write the book. But if there's nothing you can control, you can certainly control your pen and paper or computer if you you know only have computer and Wi Fi. So you can do all that we didn't have at the time. So we had to do pen and paper. But that was fine, then we can control that. I also suggest to people that to go read the chart, you are allowed to go read the patient's chart, you just can't bring it back to your room. So you can go and standing the nurses, nurses, Carol are in the nurse's station. And you can go through everything because I found mistakes that I was able to get the head nurse over charge nurse to say, listen, he got X amount or he didn't didn't do this, or he didn't have this or Nope, this person was in his room, because I had my notes. And that was very helpful. And then of course we had to sign off on it with the mistakes were made. But you can do that. And I'm not saying that there were a lot of mistakes. I'm just saying that you can find something if you're really looking and you just continue with down that path. Employing yourself with a really if there's continuity of care, for example, a nurse is going to be your typical nurse and if you're going to be in for a long haul say maybe a month or so. And you might have yeah oh yeah. My record is 57 straight days, by the way. Oh, and when when I left, Ryan says to me, mom, at least you get to leave. That was a dagger to me. I say no, but I'll be I'm just going to go take a break. And I'm going to be here, right right the next morning. But those nurses that you become very close to, they typically work schedules, as you know, and they'll try to if you really, if you really bonded with a nurse or something, maybe you can ask the charge nurse, I really like Sally, can Sally be our nurse going forward, so you can maybe even make adjustments and, and there'll be the continuity of care. So your loved one your child, they know how Sally deals her job. And so Sally and your patient, and you can really, and maybe things could get better, because we know how each other works. That's always how you can always you can always ask, they might not be able to but you can always do the ask and it's not. You know,
Lynn:
I can say no. Yeah, exactly. You did your part. So So Terry, you said 57 days and then Ryan said you could go home does that mean you never left the hospital for 57 days and slept in a bed? Other than where you
Terri:
are? Right? That's exactly what I mean. Yeah, I stayed for 57 straight days. That's my record. Yeah, I sent in the book because I just don't want to freak people out too much. But yeah, you had some really challenging times. And Bill had to my husband Bill had to work and he couldn't get off. And he couldn't actually couldn't get off. There were times that my daughter needed him or there was maybe she was at a soccer tournament or something else. And we just couldn't make the arrangement. But I had friends visiting. So it was not like I was like totally isolated, so to speak. They were friends visiting and coming down. So I felt like a little breath of fresh air kind of thing. But yeah, 57 straight days. So he obviously he was in there a lot longer than 57 at one time. One time. Yeah.
Lynn:
Ryan was yes. Oh, yeah. But you were there with him all that time?
Terri:
Yes. There were times I never looked the room.
Lynn:
And so you never left the room. You use the bathroom in there. You had people bringing you food. You had people bringing you Well, I
Terri:
we ate off the we don't we don't we ate off Ryan's tray. So we would be very creative on how we ordered food from on Ryan's hospitalizations. I mean, so we were able to order maybe two hamburgers you know? So if beloved, and Ryan hardly ate but whatever he liked he had on the plate and then we ordered you know a lot more. Yeah, we couldn't afford to do the having people or meals delivered. No, that was not going to be our case. We had we had to learn how to like hospital food. I will never complain about food ever again in my life. Never. Oh,
Lynn:
you can't that's that's the quote of the century we had to learn how to like the hospital food.
Terri:
Absolutely. And the hospital coffee. I don't drink it but Bill had you know if he wanted to go down a vending machine get the vending, you know, he had to learn how to like it. It wasn't Dunkin Donuts. But he really Yeah, and you just have to make those adjustments. You know, there was nothing we can do. And then let me say I have the time I didn't want to eat actually, one doctor said to me, I don't care if you don't eat but you have to sleep because we had critical decisions a lot of the times especially in those really hairy moments. Those days yeah. When he really absent all he says I know you can't it's I know it's really hard to sleep but please do. That way we can all get along and we can all make the best decisions for Ryan going forward. But the eating in you know you can eat
Lynn:
so did you were We were you in like I've never spent the night in the hospital with somebody else I've spent the hospital with myself. But did you sleep on a recliner did they well that in for you? How did this work?
Terri:
Well the hospital when we started out they had read those recliners those were really tough to sleep in and when you're doing multiple days and weeks at a time can't do that. And they had these these fold up mattresses that were really not good. So we made the genius move of going to Costco or whatever came out or something and we bought a little air mattress. It's just a six cent one, just a six inch and I brought that in and we just slept on that and we just that was just part of our wagon train of bringing all our stuff and I'm a quilter so I always had beautiful quilts on my mattress and I didn't have a quilt on Ryan's bed. Maybe a small like little topper just because his bed always would be so sold his cheat sheets and pillowcases everything had changed swapped out so many times and even one day Yeah, so that couldn't have it but I always had an I always it was always a pause by our door because they would see this bright quilt. You know on the floor. I love it. Yeah. Or hanging over
Lynn:
on you know somebody paying over a wall is Yeah, exactly. They walk in and they see beauty but you brought beauty into the room with
Terri:
I did. Yes. And I also brought my machine I brought my basket of fabric either do handwork I would actually quilt in the room. I did I bought a sewing machine I brought my little featherweight and then I would blow fuses out with my iron because irons would get so hot that it would be overloaded with that The because of the IV, everything was plugged in. And so Leroy was our facilities manager, and he would come and he would help me and, you know, replace fuses and do the leaky sinks. Because nothing's I can I can, I can have those med pumps go off and he all night long, but that leaky faucet will drive me crazy. So somebody would come in when you're there all the time. You, you, you, you know, you're my toilets leaking, I get a leaky faucet. I'm living there. It's my home. Right? So I was looking at things working. Yes. And it included all that. Even a new shower curtain sometimes.
Lynn:
You know, I It's funny, because I know I read this in your book, but I can't, I don't think I could really fathom. Because I'm overlaying my experience of when my dad was in the hospital. Like we brought a card table in we wanted to play Mexican train. So we drove up that table and and what we figured out was just leave the legs, leave it flat. But the car table actually on his bed he right big tall guy, he spread his legs out. And then the four of us scatter in the bed and we played. And that was our like bringing life into it. Absolutely. Here's the thing. First of all, we had several of us. So we could we could be in shifts, one person would go get the food, we were going and getting really good food, including for him. Because that helped us be comfortable. We can go get somebody else to go get coffee or tea. Starbucks was the favorite for several in the crew. And we all went home and slept at home at night. And you know, it was a hospital room that we could bring whatever, we brought in a bag like, you know, different projects that we could do. But you didn't have that you were there. And I just don't think I had realized there wasn't this sort of coming and going. Because it really I did learn this. If you leave the room, that's when they the doctors all come in and start talking to the patient. You want to hear it. I did learn that. Oh, yeah.
Terri:
Yeah, that was because when we, I'm sorry, there was a one. One of his protocols he was we were off for two or three weeks, and then we would be on for a week. But if he caught a fever or something at the end of that week, because he's getting nailed with chemo, we might have to stay longer. So of course, those weeks we would pack up for being a week or 10 days or whatever, maybe two weeks we would go in for. So I would have to be multiple trips back and forth to the car for me to bring everything up or the van I should say because I hit stuff. And that was one time that they really learned they came in and I said to them, please do not I don't want you to touch Ryan don't even do blood blood pressure. Nothing until I get back. Let me get all my stuff back up into the room and then you can do everything. Sure enough, I came back and rangos ma'am, they did everything. I'm like what? Yeah, of course they did. Yeah. And I'm like, okay, so I just brought them all back in. And I'm like, now you can do everything. And they're like, I we have to I'm like, Yeah, we're gonna you're gonna repeat everything? Well, I'm here. Because this is we're coming in off of a two or three week break from home. And now we got I have to know everything. Well, you we can see our numbers. I said, No, we're just gonna repeat everything. Because I asked you politely and nicely. If you would wait till I get back. It's only going to be about 10 minutes if that? Yeah. And they, you know, these were the young bucks. And they just they thought they knew. And but they learn a valuable lesson that day for me.
Lynn:
Well, it's interesting, because I could I hear under that you didn't have to go. I think about an escalation. I've learned from my horse trainer, she calls it suggest, as tell promise. Yeah. So you start with suggest, yeah, if that doesn't work, you go up higher? It's a direct ask, then it's a tell. And then it's a promise. And I think they heard under what you said, after you had suggested that they wait, actually, you ask very clearly, that you would promise them that, you know, until they did it. Yeah. And maybe they never did that again. And I
Terri:
you know, as the years progress and everything. And when things got a little bit, I shouldn't say better or improved or anything. But as my relationships deepen with the nurses and the doctors and the residents, of course, every year we're switching, they would go from first year to second year, third year, fourth year to Chief possibly, there were times that I'd say it'd be two o'clock in the morning and they be working really hard. And a lot of time they'd be working on Ryan's case. And I'd say you know, what are maybe I should say to maybe like 11 o'clock, I said, You know what, I'm ordering pizza for the floor. Let's get pizzas you guys order I pay. And so that was another icebreaker. And, you know, never underestimate the power of chocolate chip cookies and brownies. Because if somebody was asking what can I do to help you? Can you make crab brownies or cookies for the nurses? And they would and they would drop them off with the House bill, bring them down or whatever. And so I would be able to bring something in for the nurses and the docks and the residents because they're all hungry, starving things. So they just appreciate it. So I brought the appreciation for what they were doing day in and day out hour after hour with my family. And then I'm saying this is but I would say this is from the entire floor, I would just not say for us like, Oh, this is from everybody in the floor. Who cares who paid for it. It's just from everybody. Enjoy. So that was a big. So
Lynn:
that's so that's a, that's another thing that I think you are maybe a world class expert on, which is in times of trouble. What helps, because this, the classic thing is Hey, Terry, if you need anything, call me when you happen. I've done it 1000 times. Because I don't know what to do. I feel pushy. If I impose my will on you are what if I missed the mark? Or, you know, sometimes I'm just too uncomfortable to be in the pain? You know, there's a lot of reasons I don't absolutely. So I throw that that thing out to say, Okay, I've checked my box I offered she didn't do anything if it's correct. So what would you say to people stuck in my place, which is I'm not sure what to do a little uncomfortable or whatever. You just gave us a great one, make brownies for the hospital floor? You know, and a bunch of brownies for the nurses. What else can people do? From your side? To to really offer true help? And you mentioned that you have a place of this? And yeah,
Terri:
I do. I do mention that as a big one. Because I will say just based on my experience and talking to other families are in the same boat as me, when people say that when and we really understand where people are coming from they don't really know what to do or they don't know what to say. They're hoping that you maybe tap into them, but maybe not. And so when you say call me for anything, I can guarantee 90% are not going to call you It'll never happen. But if
Lynn:
you say hey, this is a really really close Exactly. Hey,
Terri:
your say your neck a neighbor or somebody lives on my street and you call me say hey, what can I do? Or how can I help? I say, Hey, can you did you take a look at the grass? Can you see how high it is? If you don't mind? You mean taking a mower down there and checking it out for me? That amazing? Yeah, so you do that until you go and cut the grass. You don't even need permission after the first one. Forget it. Don't even ask. Just do it. The grass is neat. Hi, cut it. Another thing they have pets, animals, cats, dogs anything? Can I can I walk the dog? Can I walk them twice a day? Can I walk on three times a week? What do you think? Give me the garage code. You got to keep your ears open. Okay, you know, then after the first ask, you can go in there walk the dog. Whenever your dog on one plate, please. You know, whatever is good for you is good for me. Because I'm down. I'm 26 miles away. So I can't do that. Hey, does it live? You need a ride to practice tonight? Yeah, she needs a ride or practice. Can you pick her up and take her? That'd be great. Those are the things yes. brownies, cookies, you want to bring a couple pizzas down for me. So I can show Natalie, us eat those. But maybe that I can ever that leftovers go to the staff here, that would be great. Those are really tangible things that people can really dig into and really do for a family or a loved one or anybody. It doesn't matter if you have a kid if somebody it's that kind of thing, because the appreciation shown from a patient family to the staff is unbelievable. The care, it just it just exasperates it just it just reverberates. It's the ripple effect. Right.
Lynn:
Mature hairs. I caught myself having a little bit I've been thinking about this in terms of delegation. Okay. So what you just described was being a master of delegation. Okay, and I have, I can literally picture myself at different times in my life going I'll give you the garage code, but be sure you this and this and this and don't do this and bite Be sure you do this with a dog and I would go into micromanaging and like the dog just needs to be walked and so you're just shaking your head like no, we are going to let you walk my dog I am not going to be a controlling control freak and I'm going to allow you to help me which is really what I have found in coaching I don't even know how many hundreds of executives and people through the process of learning to delegate how do you let go and let them do it their way? Oh, yeah. So that you can do more it frees you
Terri:
absolutely. I needed my all my bandwidth needed to be with Ryan and or Olivia, which he was doing in the day. I need all that bandwidth. Everything else going on in the house. I had somebody ruin a couple things. Some of my Tupperware they put on a hot stove everything else I mean that that's that's detailed. It's so what my mom was here one time she goes, I think your stove is not working. I go well, can you just get another one? She had to go to Kmart. She picked I go do you care what you get? I'm like no, just just get one and have it delivered. I can't pick it out. It's gonna be fine. Whatever you get, I mean, you have to let go of all those details. I mean, you can't when you when you have something, a life crisis like that, that that goes out. And I think that's really the rest of my life. I mean, you know, something drops on the floor and I'll still eat it you know, that five second rule whatever I you know, it's, it's going to be okay. And you're going to roll with it. punches. I guess that's what it is you're gonna roll with the punches you you, you're forced to sometimes
Lynn:
you're rolling. Here's what's interesting, you all those things got done on your behalf, so that you could do this other thing. Yes, you could have said I'm gonna have to go spend five hours to get into the Kmart or wherever to get it stove and get it in because then I'm going to get it done my way right now, those five hours were better spent with Ryan, absolutely. And small price to pay that you got the different stove or whatever than you would have otherwise gotten. That's nice. So what and I was thinking about like, I don't even ask me why sentiment in the lasagna came up. But I remember somebody giving me lasagna was in it. And I was like, that would not be my choice of spice from lasagna. Yeah, but I'm going to eat it. No, yeah, I need this. I need the sustained nourishment. Yes. But you also said in your book, and this is huge. People do tend to bring the plate of lasagna, the huge casserole. And it's handy at times. But there are also times where it just can't get used in your refrigerator can't be transported to the hospital. Or you want to go you know, I go into this elaborate thing when I'm fixing things to freeze them. So I can have them for later. But that's a big deal. I have to actually allocate time to go package it all up and market and all that stuff. So you said gift cards. Yeah. Assess foods and stuff like that is
Terri:
a good one. And then if you get out to the hospital, I mean, well, that was the best thing. Ryan would say where do we get what what do you put them in a little ziplock baggie? And I say what he meant which kind of cards you have now this was older. This was years later. This is like more of the more recent ones and people were did a gift card exchange here with us. And what do you have in your pocket book mom? And I'm like, Oh, we've got a Chick fil A. Oh, yeah, let's stop there. So we recovered back from like University of Maryland or something that that was like in last five years. So that was really helpful. So anything like that is really, really important and powerful. And it takes the thinking out of the person who's got a million things went through there his or her mind about their loved one. Yeah, so I think that's really good. Another I just was another
Lynn:
I was gonna say did not want to hear. I want to hear from you. And then okay,
Terri:
yeah, go ahead. I was one of the things too when Ryan this is all like around his transplant because it was a crescendo from two to 10 is when he had all the really tough years, right. And he quit talking he was very upset because now he's going to transplant he knew he knew what that was mean. He was nine turning 10. That's when he had the left deltoid muscle that we talked about the doctor that was in his room. That was all that time period. And my husband Bill had a brilliant idea of that postcard project, which is another idea. So he said Ryan is such a sports fan. He just said we had a little we got a little poster box at the post office. And all we wanted was postcards sent from stadiums and mascots and so forth. And it turned into this huge ordeal. We had 2500 pieces of mail and postcards from all over the world. soccer jerseys sent from Brazil and Argentina and the SEC sent jerseys from all the teams and it was just it just a reverberated President Bush sent him a note from the White House from Barney the dog, because he knew I love dogs. So it's amazing. Yeah, so it just you just don't know what does it mean it was through an email. So the email got reverberate to get rippled around the world. So that's how that was good. And then Ryan started to talk a little bit he it was a very good thing for him, because we would give him like 10 or 15 pieces. We didn't want to spoil the kid. Here kids fighting for his life. We didn't want to spoil him with too many postcards, but we would give you a 10 or 15 open and read today.
Lynn:
But you know, he wouldn't have been able to manage it anyway. I mean, there's comes a point where you hit these boxes. Oh, yeah, yeah, yeah. True. You know, it's a lot to read. Yeah, yeah.
Terri:
Yeah. So, so that was that was a really good that that was a that was a fun thing that happened. That really was a really Yeah, it was a brilliant idea. And it was just it was fun for the nurses. And then Bill had an exchange with a nurse down. And when we were down at Duke, we had an newspaper article written on on our door about the whole postcard project. And it was a nurse from home that she was a traveler. And she was a nurse in Hawaii. When she got the email from somebody and she sent Ryan a postcard. She didn't know us from Adam. And here she was his nurse at Duke. Talk about oh, circle moment. Oh, is that wild?
Lynn:
Wow. Yeah. And describe what a traveler for people who don't know what Zoners traveler?
Terri:
Yes. So here's travelers, they have cities and big cities and little cities around the country around the world actually. And they housed them and you can pick and you can go for like two months dinner six weeks 10 or a few months stint and maybe you maybe you get hired on by a hospital that you really like, but you can travel around the whole globe. Nursing and giving care doesn't matter what discipline it's in either. This was a nurse practitioner or I'm sorry, she was a just a nurse. Well, this man, she was a nurse, but she was in the bone marrow transplant unit.
Lynn:
Yeah. So that's, that's a way for hospitals to augment the nursing staff. Absolutely. They Yeah.
Terri:
If they need extra care, that's how they do it. And people. Yeah, they're the traveling nurses that we've met were just wonderful. They were stellar. They're like, ahead of their class, because they have to know so many different things from all the different hospitals, right? They got to keep all that in their heads.
Lynn:
Yeah. So yeah, from place to play. Yeah, exactly. So so what I was when I was thinking about the ways to help people, one of the things it was years ago, I saw a woman put forth a, a model of help for people who are going through difficult times. And she drew, she put the people who are directly impacted in the center of the circle. And then said, outside the next ring is the close friends and family and then outside that ring are more the friends and acquaintances, right. And then outside that ring are really, you know, almost like your postcard people. Yeah, who know what's going on, but they're not you're right, exactly. And what struck me and I have never forgotten it was she said, you know, a lot of times people forget, they think it's so awful because their friend is going through something. And she said they will actually she used a Yiddish term kvetch, which means bitch about something, she said the kvetch in towards the circle instead of out. So they'll come to you and go, Oh, my God, it's so awful. This has happened into Ryan. I can't believe it. I can't take this. It's awful for me that this is happening to your son. Believe it or not, I've probably done it. People do that, as opposed to she said you should comfort and find out where you are on the circle relative to the people just place yourself? Am I a close friend? Is it happening to me? Am I on the outer ring? And then if you need to bitch about it, bitch to the people either in your ring or outside the ring, but never inside? Good? And I'll have to find that and put it in the show notes? Because it is maybe I'm you're sitting here nodding like that. I don't know if you had anybody, like need you to comfort them that was outside the circle. But the last thing you need is the mom would be people needing you to comfort them when you need them. Now, if I did, I think you would you would do it. I was gonna say I didn't
Terri:
do it. I didn't do it, they would do or that happened a number of times with me. And then I learned a valuable lesson because there were a couple times where somebody would just look at me that maybe they haven't seen me in a while. And they just saw me standing there maybe in the driveway or the hospital door. And I would go up to like, I know, I would just I would start. I know, you know, you don't know what to say to me. And that is perfectly okay. I gave them that out. Initially, it took me a little bit to learn that. But once I learned that that was really powerful. Because it let them just like, take that breath like oh my gosh, I don't know what else to say to you. I'm like, no, no, I know, you don't know what to say to me. I don't know what to say either. So we're both in the same boat. So let's let's move on with our day. Let's move on with their moment. Let's move on with their lunch, would you would you bring? Do you bring a sub, you know, kind of somebody that broke the ice. And so they didn't they didn't feel? So I made them feel comfortable? And then it made me comfortable
Lynn:
to? Well, there you go again, because that's what you did was you found I mean, you actually really drew on that strength we talked about earlier in the podcast of the spiritual strength that said, You know what, they need this right now to
Terri:
Yes. And it's their friend go.
Lynn:
You never really allowed yourself to be a victim?
Terri:
No, I still don't, I am not going to go that route. It doesn't do you any good. It does nothing at all. It doesn't honor any of you spiritually doesn't know.
Lynn:
So that's where I was really struck by you know, we talk a lot about people having PTSD, post traumatic stress disorder. And yet stress is actually how we build our muscles. We don't get muscles unless we stress them. We don't really become stronger unless we stress ourselves and you you put in your book a term called PTG which is post traumatic growth. Right? And it seems to me like you are a shining example of Yes, not allowing the circumstances of life to get you down but to allow you to grow.
Terri:
Yes. I'm going to unpack that a little bit for you, Lynne. So I think it took us a while to learn this, but I think we were doing it early on, but we didn't have a name for it. Because when I was reading the article on post traumatic growth in 2016, I handled that I was 30,000 feet in the air dry of flying out to out west, I handed tobacco there's a name for what we're doing. It's called post traumatic growth. So he read the article and we've shared that many times over by Ginny graves, by the way, gi n y graves. Anyway, we, I think for us and Bill and I and he would attest to this too is that when we helped others we help others. We help ourselves we strengthen our Our bonds we strengthen our resolve. So helping others when Ryan was going through his recent tongue cancers, where can we help somebody? Where can we help somebody at the hospital? Where can we do to help? Well, you know, can I bring quilts to you? What can I? What can I do? Because that gave me strength to help with Ryan. So, post traumatic growth is a relatively new term, it was coined by Dr. To death, she had a North Carolina, I believe, and it's finding the psychological change the logical change as a result, result of a trauma event, or a life challenge. So it gives one, you know, higher bit of living, you go to a higher level of something, and your functionality. But I also believe it's brings in the empathy. We didn't talk about empathy earlier. But I think empathy is a huge component of this entire talk for us today, Lynne. And I think the posttraumatic oath also deepens friendships, I think my friendships, not only with my immediate family, but my that inner circle, outer circle, even the ripple circle, I think that has deepened my collective friendships and bonds with them. My relationships, my person, I think my spirituality has skyrocketed over the last 24 or five years regarding all this, because we talked about the tuning in and all that I think that was saying, and the personal strength to keep going. So that that is with post traumatic growth. And I always say in gains for us, it was not only a growth, but for us was gained, we gained, probably more than anything, and we can never give back. All the growth and all the gains that we received. The blessings that have come our way, are just off the charts. And we will live on my mission in life is to, to my dying day, is give back as much as I can. I think when you give, give, give without an ask or anything in return, it just comes back to you. But I don't even think of it like that. I don't even want to think about that. I'm just saying for your listeners. When you give and you don't expect anything. I think that's the best gift of all. Right? Right,
Lynn:
the picture I have. When I was a kid, I loved doing Easter egg hunts. Yeah, my parents would hide these colored easter eggs this back in the day when they you know, would actually boil the egg and put it out on the ground. And then I better eat it. And yeah, later we learned maybe that's a good way to get you know, sick or whatever. But, but they would hide the Easter eggs, you know, so that if you looked out in the backyard, maybe you could see the first one. But you knew that each of us had 12 eggs to go get. So there, there's 24 eggs out there and 23 of them are hidden. And so we had to go find those eggs. And then we can have them for breakfast. But they were so beautiful. The turquoise is the pinks, I can see it now. And the thrill of finding it under the leaf, you know, behind the tree. Yeah, or you know, onto the side of the bush or next to the little gardening toolbox or wherever mom put them out in the backyard. And, and the picture I get of you is you are looking out and you see whatever you see. And then you're going to go find the easter eggs in there. I'm going to go find my blessings. They may not be hitting me between the eyes, because right now, my child's eyes just rolled in the back of his head. He's coding and I don't know what the hell's going on. But somewhere in there, you're still gonna you're looking for those Easter eggs, those blessings that say, this is hidden but I'm going to find it and I'm going to claim it as my own and share it as quickly as I can. That's what I'm hearing.
Terri:
Yeah, pretty much so I mean even from that first day Yeah, from that from those that first week of diagnosis it brings me right back to it I'm pretty much an even know what I had on and what Ryan had on. It's uh yeah, I think that's that's true that finding the East race because we're dwelling on it and and even one doctor said to me too early on, not Dr. Shah but another doctor, another excellent physician. He said that don't beat your self up you came today this is a day Ryan starting as therapy you know, don't beat yourself wait what I could have done what I should have Coulda, Woulda, it's not going to help either. So stay away from those. Those things in your mind. Go from today. You have to get through today. He was very good about that present, being in the present and get into your present moments and not worry about what you did or didn't do in the past. Maybe Ryan had PTI on the back on his back and some bruising but I can't let myself go. Why did I take him two weeks earlier? You know, I he says that's not going to help you. We're starting today. So you have that's all I had. So that was that was a really good thing and I don't like to go back to there.
Lynn:
No. Well, okay, so I want to talk about the beating yourself up because I have actually been you know, I work a lot with people. A lot of high performing people but kind of people I work with a lot. beating themselves up feels like the right thing to do your way. And it is not the right thing to do. But we feel it feels like this is how you improve. In other words, people want to learn, they want to improve. So they go get hard on themselves. But yet, if they were to go pick somebody else to help, they would never beat them up to make them better.
Terri:
No, exactly. So we got to forgive ourselves for that. We all make mistakes ourselves kindly, and treat yourself kindly for, for treating everybody else kindly. And we're thinking everybody, we should think ourselves too. And they treat ourselves kindly. Yeah, interestingly. Yeah. Speaking of that, I remember Ryan, even in the PICU, the kid was like, frankly, dying, and I'm telling him, You have to say thank you to the nurse.
Lynn:
Yeah, I know. The doctors do that.
Terri:
No, no, I'm telling Ryan to tell the doctor or the nurse. Like you, you got to, you have to say thank you please say, you know, right, I would just whispers and tell them. Thank you. Thank you. And that's amazing. Yeah. Because and then, because, so he learned it. And weren't the same dogs that was telling me all these other things. Dr. Gutenberg, he said, treat your child like is gonna live forever. So if you have to reprimand them in the hospital, if you have to tell them, please, and thank you, then that's what you do. And that's what we did. Now. There was nothing for Ryan, he didn't do anything bad. He didn't, you know, speak out. He didn't
Lynn:
flinch. But telling him to thank them is part of it.
Terri:
Absolutely. was part of the growing up. Yeah, because he had to learn stuff. He had to learn those social graces, and he learned in an adult world think about it, he was so sick for so long, he couldn't really interact with a lot of kids. Once he got out of the hospital anywhere in the clinic. Yes, he could. But while he was in the rooms, you know, upstairs in the in the on the floors? No, he couldn't interact. No, because he was
Lynn:
so you know, okay. There are a lot of people, mothers, especially who want their child to have the best thing that would assume that what they want to do is take away all those responsibilities. But what you did by giving him those responsibilities is you showed him how strong he was. Yeah,
Terri:
you bet. That's a good, so you're good?
Lynn:
Yeah, I mean, to me, yes. Is I think about people who are born with disabilities, and the guy's name is going to escape me. But he was born without all of his limbs. And his mother said, well, let's figure out what you can do. Exactly. As opposed to I'm always going to take care of you because you can't do this thing that I'll be other kids can do. Let's show you what you can do. Yeah. And I think there's just a lot of power in showing Ryan that you still believed in him. And then he was able to do things and that you expected things from him? Because that says to him, Okay, I got to show up to. So you don't have to be a victim. In other words,
Terri:
yeah. One of the things I wanted to say too, about Ryan, and you know, his care and everything else, and I don't know, where you get the strength, but maybe from both of us parents, maybe a sister too. But even as a three year old, I think I mentioned in the book about his unwavering focus that I didn't see with some of the other kids. They're not all the kids, but I mean, some of the kids and maybe they didn't make it in just for example, he had he and another little girl had the same infection. At one point, and the little girl was less than a year old or right around a year old. Ryan was a couple years older, so he was three. She didn't wake up the next morning. And Ryan did the exact same. It was and she just couldn't find it. And Ryan fought. He focused on his body in a senior three year old focus like that one was just body. Oh my God. Now he will tell you video games. He was playing video games at three as you get older video games, he claimed save his life. So nobody should really poopoo video game because man, there was some things and those neural pathways in your brain have to think of different things. Video games can help you do that, because he lost so much with cranial spinal radiation is chemotherapy. nact. Doubtless he can't do a puzzle to save his life. But he could figure out something on one of his video games. Yeah. And then and then the small motor skills with the thumbs and the fingers. Oh, yeah. Because that goes with neuropathy is a real terrible thing. But he kept his hands limber so he can write with a pencil he can write with him. That was all through video games. I am not you know, it is what it is. But he will tell anyone that asks him what saved your life. He'll say video games. Yeah.
Lynn:
That's amazing. I know. Well, I see that just shows you that something is not all bad or all good because we know that video games can be harmful and we also know video games can be helpful. Exactly tool and like any tool whether you use it yep, in a good way or bad Why is all
Terri:
that really matters? That's true. So we learned and
Lynn:
one of the other things that triggered for me was I was I heard Sebastian, younger interviewed, he wrote The Perfect Storm and has worked with a lot of military people. And he was talking about this this post traumatic growth, or, really, in his life, it was PTSD. But he said, the best thing we can do for PTSD patients is give them something to be responsible for, whether it's making them responsible for a group of people or even giving them a pat that they have to take care of. But I think this is well researched that yes, that when somebody is down, the best thing you can do is actually ask something of them, and ask them to show up, because that gets them out of their own self and into doing something for others. And I think we're hardwired I know we're hardwired. I know this is very well researched to be in relationship with each other. We don't exist as humans without relationship. Correct. And so you found lots of ways to create that for Ryan, including saying thank you to the doctor.
Terri:
Yep. Absolutely. And the other thing in volunteering, I mean, the kid if his counts are up, meaning his ANC has absolute neutrophil count, so it had Dr. Shad, and all the other doctors wanted him to be over 1000, which we typically have probably three to five to 6000. So if you're over 1000, you can fight off infection, you can fight, cold, cough, whatever. But anything below that he was pretty much hospitalized or he couldn't fight off. But he was over 1000 We were on. We were volunteering somewhere some way somehow, and he was always dragged along with me. So he learned from a very young age with volunteerism was helping others. So would my daughter and that's powerful, and they will never forget it. And they got involved in their camps, their special love and brass camps meaning as a organization here out of Winchester, Virginia, that brings cancer kids and their siblings to camps separately, and they learn the power of attorney combo of connection there. That has has been their lifelines. Also, my daughter's best friend is a girl she met a camp because her her sister had cancer. So because Olivia will tell you it's in the book. She says something along the lines that her soccer friends and her kids that were in a school with her and the kids at the pool know, they didn't have a sibling with cancer. They didn't know what she was going through. She didn't know Mommy was not going to be home for 57 straight days in a row. Right? They didn't know they didn't know what that meant. Mommy wasn't there to take her for a haircut. But a neighborhood neighbor could take her for a haircut. Yep. And I think that they mature beyond their years it from a very young age. They had to they were forced, really
Lynn:
well, they did. But they also had great parents. And we, you know, I know your husband Bill through the same way we met, right is through right? We're in a writing and community workshop, right, Seth gardens, akimbo writing community, you and I are going through our second round, right? And somehow we were we have ended up it's like Seth Godin said when you join, it's going to be overwhelming, because there's going to be hundreds of people. And it's like going into the cafeteria in college that first day and you're trying to figure out who are my people? Where am I going to find them. And eventually you start figuring out who you're going to go sit with at lunch. And you're one of those people that I found at my lunch table,
Terri:
that same same lens
Lynn:
just drawn to and your husband as well in this in this group. So I mean, one of the things and this isn't in your book because Bill just told me this the other day as we were communicating back and forth that his boss was so amazing in letting him you know, put his family where his family belonged. Absolutely. When this was going on
Terri:
I know it we've had in every step of the way we had these little blessings that add up to a life right and that was that was a huge one that they said take care of your family first you'll do it and now they got plenty back from him when things evened out and Ryan we had a really good spell of you know 11 years or the other one so it gave back but during the most curdles gold times Bill was able to be there be there for Ryan be there for me be there for Olivia our whole family and that was very powerful because we need we needed all hands on deck. There were certain times our team we were team had
Lynn:
and he had a job as well because you know you don't just get to go quit your job at times like this, if at all possible now and so he can continue to support the family and continue to support you especially supported Olivia as she's watching because all of a sudden all the parents attention is getting swept up with the brother Maria and anybody who knows anything about sibling rivalry so back that's the conditions to create a problem but not the way y'all handled it.
Terri:
No, I mean sure, sure. tongue in cheek say he's the king or under breath, the prince or whatever he gets his own way. Or I better ask trying to ask you because then you'll say yes kind of thing. Oh, yeah. But I think there's a deep love between the two. And she totally respects what he went through. As she aged, she realized the what he really went through, because when she go back to camp every year, and kids siblings would pass away, she realized, and they had a lot less what Ryan went through. And they passed away. And then she realized, then that just kind of Caterpillar like, oh, geez, okay, we're on to something here, mom. Yeah.
Lynn:
Yeah. And this could have been us. Yeah. And, and, and what strikes me, Terry is the, I'm going to hit on a little bit of a touchy subject, which is what we call success and a time like this. I have noticed, like, success is like, you know, Ryan is he did survive his cancers. He could have not survived. And that would have been awful and devastating. But something tells me that you were in this for the whole thing, no matter what happens. And with my daughter's addiction, I had to face this as well. My daughter went through very severe addiction would tell you that she would have died. She she felt like she was less than a week away from death. In 22,000, I think it was 2007 when we realized she had I guess relapsed is not a medical term.
Terri:
Yeah, I think it is. Yeah.
Lynn:
So so she was in really bad shape. And she's writing about that herself, and has written books about it. But you know, she is alive. And she survived. But there was a moment where I had to accept that it was very likely that she was going to die. Yep. And I remember, in my spiritual life and in my prayers, I every time I wanted to go control it and save her. I would hear that little gray, there's that little gray cloud, that voice that was like you let me be God. And I and you, you let you give it to me. Because you're going to be able to handle whatever happens. And the moment that I accepted that whatever happens could mean the end of life was the moment that I started living. Yeah. That's a wonder for you. If if you have been through that thought process because you had to face Oh, yeah, answer for your child. Yes. In
Terri:
in probably every time he you know, first diagnosed and the first relapse, second relapse, and then transplant everything. Interesting left, it is a touchy subject. But I could say this, that I would open up his drawers just to see like, if he died, what is he going to have what he's going to be wearing in the funeral. And I had to do that multiple times in my head and look in his drawers. I haven't I don't go into a gym. Now. He's 26 years old. But when he was younger, I remember thinking that way. I had to surrender those feelings. So you're right to the higher power to the spirituality of it. Because there's some things I eventually can't control that I can control i can i and that's what I'm hoping for hope I can control maybe my hope I can control inspiration for myself and for others, and especially my family. But I couldn't control that ultimate thing. Correct? Because they know we can no no, no, never, you know, we can no human can do it.
Lynn:
And, and, you know, we forget, after a chronic illness or addiction, like you and I have both been through. It looks like you have a lot of moments of control. But just as we are speaking in the news, you know, they are still searching for bodies. Yeah. In the Surfside collapse. That's correct. Miami, yeah, most people went to bed, not knowing they weren't going to wake up. And every day is a gift, you know, and I wake up. And I really try to remember this that every day is a gift and that the old me, I went to the emergency room in the late 90s When I was big in the corporate thing, and I was having chest pains and I find it on the bathroom floor. And my husband called an ambulance and took me they took me to the hospital. So I spent the day in the emergency room. And most of my worry that day was I got to get back to work because nobody can do what I can do at work and this stuff is falling through the cracks and this project here and this thing here. And I really had no perspective that if I didn't come back in on Monday, it they would have picked right up and gone. And you know that my husband would have lost his wife or my daughter would have lost her mother didn't really dawn on me that I need to be living my life and yes, we can live to work, but it's better that we are really hard work to live. I mean, we just really want to put our lives in right perspective.
Terri:
Exactly. You got it. You nailed it, when? That's exactly right. And just putting, putting everything in perspective, and you have to find love and joy, and laughter was a big piece of it. And people know, How can you laugh so hard? Well, I need that. If I can, if they can put that in IV battle that, even though it is Medicine said, Yeah, I did.
Lynn:
I did do this for somebody wants as I sent them a bunch of things to watch that were funny, and it actually really did help. And at first, they were like, Why would I why? I think it was, you know, Oh, Johnny Carson tapes for somebody that was older. Yeah. No, that's great. But they were like, Why would I do this? And I said, just see what it does. It's like, man, I was laughing. So fun. And it just puts all those positive endorphins running in our body. Feel good? Yeah. Get out of our, you know, sort of get out of ourselves, in a way Get, get out of our heads. And yeah, maybe back into ourselves. I mean, it really does,
Terri:
even when I think one of the funny and I know you had to be there for one of those things, but I do write it about the book when Ryan had one of his when he after his Delta left deltoid surgery was that muscle was removed, and it was very painful, and so forth. But he had to have the he had an irrigation system there because of all the parts of draining all that and all that necrotic tissue and so forth. But we had to change his dressing every day. The dressing had to come off and be changed because it was it was just so soiled every you know you're like a week or 10 days, but it was so painful. So they put them under we just put them under, you know, anesthesia, but we didn't have to go to the PICU he was able to be on the floor. And one of his favorite nurses Joan, she was a real cracker pot. She is super funny. And we always he had had attending standing at the door while we put him under you have to have somebody there an anesthesiologist or whatever she was a nurse anesthetist, which is good. But you have to have an MD to standing there at the door. So we get them all prepped and everything and Joan and Ryan were laughing about she says hey, I'm I'm just going to hand you the syringe you're going to push in, you know, 10 cc's and blah, blah, blah. They had this all planned out and we were laughing and carrying on and Ryan thought it was a greatest thing. Finally, the doctor, she the regular nurse who was hooking him up to all the bells and whistles that you need to have for getting on putting on somebody under anesthesia calls a doc he comes over. He's standing in the doorway, I'm at the bedside, Jones on the bed. We have his nurse stand in there. He says okay, go ahead. So she hands Ryan the syringe to put push in 10 CC's. So he pushes in the 10 CC's. This guy. He's not saying anything yet. This doc picked the deck and just stared at the job. And then she says now I want you to start counting back to 100 machine. He gets it like 97 or 96. And He's out cold. Well, yeah, meantime, and those five or 10 seconds at this all or 20 seconds it all took place. He fainted. He just filled out accordion doorway hitting me. No, because we're rebel nurses and rebel parents and rebel patients. I mean, he
Lynn:
could not believe it. I remember that befall that was I remember before
Terri:
Yeah, there was a profile. Yeah, the magic milk. And then so we laughed and laughed and laughed. And this poor guy. And of course, people are running, you know, because the people outside of the room saw him accordingly. Fall, he left the job. And two after two weeks, he I don't know if we were suited. He wasn't suited for that. And he was not happy. And when he came to and everything. I think he came back and he really gave us a talk into but we just kept laughing under our breath. And it was the funniest thing. But nothing was gonna happen. I mean, every Ryan was right there. And he's had the profile. I mean, this was like probably the sixth day that he was getting it in a row. You know,
Lynn:
it was about to say this is this was old house as a case of knowing what what can handle
Terri:
what you can hear. Yes, yeah, absolutely. But it was a funny moment for us. And we will continue to live from that day. And Ryan, even though he can only giggle with us for you know, 10 or 15 or 20 seconds as everything's going on. But boy, when he woke up, did we, we we left a left to left left a whole day.
Lynn:
Say those? Those are the little moments? Yes. You know, just fill your tank. And yeah, just I just think theory that the that what you did through a very difficult time was filling the tank. And another way that you're calling it and this is your second book is manufacturing sunshine.
Terri:
Yes. Thank you. So is
Lynn:
that a story? Yes. So you just say a little bit before we wrap up about the book you're writing now because we're going to send people to go buy the book. Great, but not the one you're writing. Now.
Terri:
Manufacturing some changing Sunstein is coming off the heels of the focus fight because we had a we had to manufacture a lot of sunshine over the years. But other people have to manufacture in sunshine too. So I'm also getting sunshine stories from other people. But just little stories and little vignettes of how somebody had to manufacture something in their lives to get them catapult them past a tough moment. It could be reconciliation, it could be forgiveness, surrendering. Just a funny little. I did a story about two little boys in a puddle in Rhode Island back in the 60s, and they couldn't get wet. But how do they how do they could they play in that big deep puddle, and they took all the clothes off. And then they were able in a worse, it was a hot summer day. So they were playing the puddle playing the puddle, dry themselves off Lake naked and then in and then put the dry clothes on to go home. As the mother was watching with the neighbor, the whole thing that unfolded which is a cute story. That's that's yeah, that's that's gonna be one of the stories in the book. It's that stuff like that, because I wanted I made you laugh. So I hope people either put a smile on their face, or they actually laugh out loud would be really a testament to some of the stories that are going to be in there. But right now the focus fight is getting some traction. And Glenn being on this podcast has been wonderful and an honor and a privilege that I cannot thank you enough. And
Lynn:
well, there's something I what you said something about manufacturing sunshine, and we talked at the beginning about how you got a team? Yes. And you said about getting stories from other people from manufacturing sunshine, you cannot stop without talking about the fact that you got 58 people. Yes. To reflection, the focus fight? Yes. These were people they all wrote a reflection. Some are long, some are short, Some Were Neighbors, some were other nurses. Yes. So many people, but 58 people Yeah. spoke into their experience of walking alongside you with you touching you. Yes. That period. Yes.
Terri:
So it's kind of like a play on that. Because I think that's my that's where my strength lies. I'm a connector, I think when? So I think my Oh, yes, yeah. So I think that's my strength. And I think I like that and the stories are good. I was very, it was an unbelievable experience to get all those reflections back. Because I didn't give people a really just write a reflection, I didn't give a lot of detail of how to what to do, how to write how long whatever, I'll edit what I need to and everybody gave promotion and creative license. And I need to really do touch anything, maybe one or two that I had to really, you know, do some editing to but and my editor, she loved everything. And I've gotten a lot of good responses on that it was. And if you read about there's one particular person in there and talk about manufacture and sunshine, my friend Sharon Johnson, who lost all three children, she had three children lost all three of them. How do you wake up Lynn every day when you do that? So people read that. And they are just like dumbfounded. They like wow, how can so her story is just unbelievable. She isn't a wonderful person, her and her husband. And they get up every day limb when you ask about getting up. And, you know, I'm a nobody compared to them. And but their first child they lost to cancer. And that's how I met Lynn. I'm sorry, I met Sharon. And yeah, it was just yesterday have an amazing story. And I wanted to give her that chance. Because she's never I asked her. Have you ever written about your children and their near death? And she says no. And she was a second grade teacher for like 35 years. And she never has I said, Listen, if you can't do it, if it's too hard, then don't, it's okay. But she muscled through and wrote that beautiful reflection. And of course, the other 57 are just as beautiful. But that is really one that is just amazing that she was able to deliver that for herself. And for the focus fight.
Lynn:
I can't even imagine what it was like for you as you got each of them as they as they came in. And you read them, man, I was
Terri:
in tears most of the time. Because they were so powerful. They were so powerful. And it was interesting. I liked how people they wrote about different cuz I said some more about a bill or Olivia, or Orion or all of us together or how their lives intersected with ours at some point in time. That was the beauty of the whole thing. Really enjoyed that. So that was a good yes.
Lynn:
Yes. Wonderful. And what I'm, you know, this has been like a masterclass and how to handle adversity? Yeah. Okay, this is this is this is what this, you know, it's so much more than, yes, it was childhood cancer, right. It was adversity. And what you are teaching all of us is the things that seem almost counterintuitive. That actually are the things that make it work.
Terri:
Exactly. Like helping others help you do something for somebody else helps
Lynn:
you Yeah, and the team's I mean, and and, you know, I I am so glad to have you on my team through our writers. Oh, yeah, me too. And out to everybody in that group because every Monday at two o'clock Eastern, a group of us it's about six to 10 regularly of different writers. At different stages of our writing journey, get together and lift each other up. And that's one of the reasons I knew I wanted to have you on the podcast area because you're constantly lifting me and everybody else. And what's interesting is when I watch you lift other people up, it lifts me up. And David benzyl talked about this in the podcast I did with him about a year and a half ago, he said, There's research that says that we will actually get our, when we see somebody else help somebody, we actually get that benefit, as well. We get the little I think, the dopamine kick or maybe an endorphin kick. I'm not sure which. You know, that's one of the other things that happens with teams is when we lift each other up on our teams. Absolutely. It benefits everybody. Yeah,
Terri:
I do. I think helping others. It's underrated or over at I mean, it's an eye catching. There's Yeah, we need them. And I think that I think we've seen that too, especially as we've gone through and coming out of the event pandemic and all that I think we see a lot of people helping people on which is really wonderful. But I will say, and maybe we can end on this, but it was just something I had to do for myself and like you said to gain the strength that I needed the spirituality, whatever it is to get through my moments. When Ryan was diagnosed in 2016 with his tongue cancer, his first one. There was a woman in our neighborhood who passed away suddenly who lived on the street for me. So I was I would walk down there because I had the dogs at the time. I was walking my dogs down there and then I walked by and one time and I father was left with two young boys and I that I saw Ryan right because we had a we had a period of time that before Ryan surgery was playing, you know, he had the diagnosis, but we had to get on the books to be have the surgery now. So I was walking down the street walking the dogs. And I came home, brought the dogs back, grabbed my lawn mower. And I went back I went down the street and I law I mowed as lawn because I thought to myself, yeah, yeah, I got this looming ahead of me this this this tongue cancer, this surgery for Ryan coming up. But I'm going to gain strength because I know this guy is he's reeling right now. He just his wife just passed away a week or two ago, and I'm going to help this guy don't nobody was home. I made sure to and I did it. It was early in the morning. So it made sure like they helped me so I think one neighbor saw me. I didn't want anybody to see who was doing it. You know? You know, cuz I just want to do it. I don't want I don't want the future. I don't want I don't want anybody say oh, she did this. And she's doing it. No, I don't want I don't want that at all. Again. For credit. I'm no no, not at all. Because I know where he is. Okay.
Lynn:
What what is the video game? I think all of them have some way where you go in and you get strength, like you finish it thing and it like adds to your like life force. You know, and then during the game that like strains out and you have to go do things like CAPTCHA or whatever was like my Easter icon idea. Okay, if you like yeah, the picture I have is that you went it's sort of selfish, but in a good way. You went to mow his yard for your own strength. Absolutely. Add life force to yourself.
Terri:
Yes, I filled my bucket like you said, That's exactly right. Because I knew I was gonna do that. Yeah,
Lynn:
maybe that's how we're wired. And we don't realize it so we we cruised it. Oh, I got to preserve my strength. So I'm not going to mow his yard even though I know that would be helpful to him. It's the opposite. Yeah. And if there's anything I take away from this, yes, that because I don't think I do that enough. I know I don't do that enough. You could start today. I can start today. Exactly. No, but you do your thing. The handwritten notes you talked about this as well? Oh, yes. Oh, I every time I receive a handwritten note. I I can feel the care and the intention of the person on the page.
Terri:
Absolutely. Yo, man, I don't feel that handwriting. Put your finger on the writing because you're touching them that just broke down. Yeah.
Lynn:
Love that. And you know, he humans have been writing to each other for 1000s of years. This thing if I give that up? pewters and digits, right. It's not the same. It's just so for anybody that says I sent them a text it's not the same.
Terri:
Send me a thank you card. Teach your kids to send a thank you card is just too much. A four year old could sign their name, you know, yeah. Or put their you know, T capital T for tearing it or whatever. Yeah. And they learn and it's really amazing how in you will touch people's hearts.
Lynn:
Yeah, and it's not it's not because you want them to give you another gift. No, because you want to acknowledge the care they went and giving you whatever it was you're thanking them absolutely
Terri:
live lived your life like a thank you. Yeah, because yeah, we're here is a speck of sand right? As we're here as we're all trying to help each other. get through the tough moments. Celebrate the good moments together celebrate the tough moments together to that celebration and everything right?
Lynn:
We try to do every live every day. Yeah, fully don't have any guarantees that you'll have another one tomorrow. So yes, you know, Phil The ones you have today with Jim So, Terry, yes, this has been amazing. Thank you. We will put it in the show notes for how people can find you. A lot of people are listening to this driving down the road. Okay, want to hear about it anyway, so just give us a quick handle on how to find you on Sure. The internet on the socials and so forth. Sure,
Terri:
I have a new website built. Terry Tom off.com. It has a lot of information that went and I went over, and it'll be building I'll be building up that too as as, as the year unfolds, also, the focus fight can be found on Amazon. It's an e book and a paperback so it's printed on demand. So you can look at that. And I am in Facebook, you can find me under the focus fight or Terry Tom off Terry Nolan Tom off, I guess I have my there. And Instagram, I have all the main ones now and LinkedIn too. I'm not as prolific as like my husband, who loves the social media and he really helps me
Lynn:
with a lot of the house is great. He is great, his Instagram and so forth. And he's talking about
Terri:
yes, and stuff he's good at I'm not as much because I'm doing the work, I'm doing the work. And I also have a quilting, I am a big quilter so I have a quilting business. So um, if I'm not at my desk, or my dining room table writing on this side of the dining room table, I'm on the other side of the dining room table with my sewing machines and my irons and crafting beautiful, treasured keepsakes. So yeah, so I'm doing that. We'll have all
Lynn:
of this in the show notes. So you guys can find me great. There's a few more surprises we didn't even get to on her website about some things that make Terry interesting. Just go check it out, go check out things you may not know about me, because I didn't talk about all Maria. And for those of you listening, thank you so much for listening to the end, I so appreciate you as my listeners, if you want to leave us a voicemail. And sometimes people do want to, you know, leave a voicemail for the guest or me, you can do that at Lynn karns.com/podcast. And on the right there's this little black button that said leave a voicemail, and you click that and I will get your voicemail through email, I can even give you one back if you want. So and if you like this, or if you know somebody who needs to get some good tips on how to handle adversity, share it with your friends, this is we so appreciate that, as well as subscribing to the podcast so you know when they come out. And if you feel so moved, a rating would be appreciated, very much appreciated as well. So thank you for listening. Thank you for listening to the creative spirits unleashed podcast. I started this podcast because I was having these great conversations and I wanted to share them with others. I'm always learning in these conversations and I wanted to share that kind of learning with you. Now what I need to hear from you is what you want more of and what you want less of. I really want these podcasts to be a value for the listeners. Also, if you happen to know someone who you think might love them, please share the podcast and of course subscribe and rate it on the different apps that you're using, because that's how others will find it. Now, I hope you go and do something very fun today.
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