Infinite Love for Our Children and Endless Support to Us
Hosted by Erica Stearns & Kristyn Newbern with guest Dr. Donna Cartwright | Transcription HERE
Join Kristyn and her mother, Donna, as they discuss the grandparent's perspective on life with a grandchild who has a rare genetic condition.
This episode serves as an essential reminder to take time to have hard conversations with your loved ones. Take time to talk about your feelings and share your valuable perspective. And most importantly, take time to listen to the stories of others. Even if you think it is one that you already know by heart, you may find yourself pleasantly surprised.
I'd love to have more conversations like this.
I was gonna say my mom's gonna schedule like a zoom call every, like a deep reflection zoom call,
ya know, I would love to have more conversations like this. This has been really has touched me deeply. And it and it's been a wonderful opportunity to tell Kristyn, how I feel about her little foursome, well five with Charlotte
Welcome to Season Two of a typical truth. I'm your host, Erica Jolene. In just about every episode, I start by quoting Walter Fisher, when I state that humans are storytelling beings. That's right. We all have a story to tell. And it is through those stories where the power of connection, validation and community are built, which is why I created this podcast to amplify the stories of people in my community, that community of rare diseases, disabilities in complex medical conditions. Not only will you hear from my peers in this community, but you will also hear stories from friends, family and professionals who advocate with us. My guest host for this season is Kristyn Newbern. She's a fellow medical mom to her son Luke, who was born with congenital heart defects and was later diagnosed with a rare genetic condition called Noonan syndrome. As we near the end of this season, I've looked back on all the episodes that we've recorded up until now, and I can't help but to see that so much of this season has centered around the theme of support. That was not planned. That just happened naturally. Each episode provided us with a unique perspective of so many different types of support that the newborn family has received from people both near and far. And today, we are going to hear from Luke's Nana. That's right, Kristyn's mom, Dr. Donna Cartwright. Grandparents are often the closest to us throughout this rollercoaster of a journey when we become parents to children with medically complex conditions. And yet we rarely hear their perspective on what it's like for them to watch their children face the unimaginable with their medically fragile grandbabies. This episode focuses on the support in perspective of grandparents, or in this case, the love and pride that Kristyn's mother has for her daughter in the family that she and Kevin have fought hard to build.
Well Mom, I am so happy to have this conversation with you today. Let's start with some rapid fire questions.
Well first, before we do that, I want to tell you, I feel honored that you want me to do this.
Thank you. Okay, what food sparks a joyful memory from childhood.
Well, as you know, I love food. So I have several. I have several my mother's fried chicken and her spaghetti and my father's barbecued ribs and it's turkey dinners and it's vegetable soup. And my Nana's beef stew and Salisbury steak and my grandma's lemon meringue pie. Which by the way, I did at one time find a recipe that I thought was hers and tried to duplicate it. It was the worst thing I ever made ever. So I have given up trying to duplicate her wonderful lemon right?
Sometimes those recipes stay with the person who created them right? That is correct. What is the first thing you notice when you meet someone new?
Their eyes, their smile, if they are warm with other people. If they're welcoming,
which room in your house do you spend the most time in?
I would have to say there are two rooms one is what we called peanuts room, which you are aware of which is our last in room that we have built. Shortly after peanut came to live with us in peanut supervise the burgers, it was her hang out. So you gave us a plaque that said peanut, we hung that up and it's still there. And we still think of her always. So that it's one. And then the other is, is the breakfast room, which is right next to it. And I do a lot of my work there.
And for those who don't know, peanuts is the dog that I adopted in college. And I stole and that my mum stole when she when you were supposed to have a temporary fostering relationship while I left town for work. And by the time I came back, I could tell that the bond was unbreakable between you and peanut. And so I decided not to try to break it.
And I appreciated that I was I felt a little guilty, but I was really glad.
I think peanut was the happiest.
She was the queen of the house. Yes, she was.
I would like to say I know you pretty well. But could you introduce yourself to our listeners so that they could get to know you a bit where you're from your education, professional and personal life so far.
Okay. I was actually born in St. Louis. I have lived in Missouri, Illinois, Oklahoma, Connecticut, Pennsylvania. So I've lived in a variety of places. My education is I have a Bachelor of Arts in Economics from Connecticut College, a Master of Science and industrial administration from Carnegie Mellon University, and a PhD in Business Administration with a major in marketing and a minor in management from St. Louis University. I am married to the world's very best husband, Derek Barnett, and Barnett, and I have the most wonderful daughter that anyone could ever imagine. Let's see professionally. I, I worked for over 18 years at what was then Southwestern Bell corporation or SBC, and it's now a TMT I worked in management positions in both regulatory and in marketing planning. I left them because they moved their headquarters and the type of job I had, would have required me to move to San Antonio. But by that point in time, not only was I married to dad, but I had view and there was no way I was going to break up our family. So I had just finished my PhD. So I decided I would start teaching. And I started teaching at St. Louis Hsu, and taught there for a year full time. And Webster University recruited me and wanted wanted to ask me to teach part time, which you I asked you, dad and both of you just started part time. Me to go part time, so So I left St. Louis, you and went to Webster and I've been teaching at Webster for 25 years. And it's been a really good experience and I've enjoyed it very much and it gave me more time to be involved with you and help my parents who as you know, had a lot of health problems and needed some help. And, and you were wonderful to be with me through that. So
I know we voted part time because selfishly we wanted as much of you as we could get so it worked out.
It worked out for me too, because I loved the time being able to devote more time and and be room mother for your class and do stuff like that. So I enjoyed that quite a bit. phenomenally actually. So it was a good experience. Well, Mom,
I have always admired Your professional success, especially. Now, having navigated the world of being a parent, and a professional, you pursued a rigorous education and started a career all in the 1970s, then continued to excel through the 80s and became a first time mom in 1989. This timeline is quite unique, especially for women, and especially during these decades, I can only imagine that there were tremendous obstacles to overcome that your male co workers certainly did not face in the workplace. And on top of that, there were likely tremendous pressures from societal expectations for moms to be at home, especially with children. Could you tell me a little bit about your entry into parenthood, maybe from that perspective, or any other?
Yeah. One of the things, differences, one of the impacts is that women who hoped to advance could not expect flexibility. And that that was a bit of a challenge. So dad, and I had to be had to make some decisions. And the decisions had to do with things like we were not willing to relocate, because our companies had places all over, but none of them were the same except St. Louis, that limited ability to advance, it was just too important to us to keep our family together, especially once we had you. And that that made a big difference. I will tell you, I people walked into my office, they used to call it Kristyn’s shrine, because I had your picture all over the place. And that was good. It was very comforting to make. Dad and I were both traveling a lot. And we we really had closely coordinate schedules. I think in part because we were so much older when we had you and because we had had a miscarriage before you and we're concerned whether we'd even be able to have a child, we did not want to leave you in someone else's care. And at one point in time, we were moving on we were coordinating schedules, we thought we were going to have have to have you off one to the other at the airport. And so it started becoming clear to us that we can have some problems. I had some good bosses. And that helped. But there were still some challenging times in terms of our schedules.
So what were what were some of the values that you decided to or inherently brought into parenthood that you wanted me to absorb or learn along the way.
I wanted you to see how important it was to be involved. I wanted you to see that it was important to take initiative, that it was important to do things that would leave the world a little bit better off than it was before. And to make a positive impact on society. Now these these are things I even try to communicate with my students in the classroom. This is to me if if we can't try to make things better, what's the point? So it's really, it's really important. It's important to have the right heroes, to look up to the right people, to have a good sense of right and wrong. To be caring, to be to be sympathetic and empathetic with people to work hard to have a passion to have a passion to help others. Value family value people to appreciate life, to appreciate church, faith,
all those things. Just a few small things, right. Just
a few small things. And I think that you embody it far better than I ever have. And I I'm so grateful for that. You taught me well. I appreciate so ma'am. In
addition to being such a successful professional in your field, You also were a rock of support for our extended family still are a fantastic wife and mother. In addition to all of this five years ago, you found out that you would be a Nana. Luke was the first grandchild on both sides of our family. What feelings did you have when you first found out that I was pregnant?
Okay, we were thrilled. But we were also surprised. You know, as old as we were, dad, and I didn't have you until five years after we'd been married. You had just been married about two years, when you guys found out you were expecting a loop. And so we loved the way you told us. It was awesome. And to bring the admit one grandparent ticket to us, and we loved that. But we were, we were like, Oh, my goodness, this is so fast. And you know, we're very slow in making those decisions. So. But we were absolutely thrilled. We were very excited. We started planning immediately. So yeah, it was great.
Yes, it was. It was a full steam ahead effort for both Kevin and me and you and dad on on the planning and transitioning into welcoming a baby. Yes, yes. So I don't know about you. But I often split my life into the days and years prior to and following that fateful anatomy ultrasound day, where I found out about Luke's heart. I do remember calling you and dad in the car driving home from that appointment. But I don't quite recall the conversation that we had, or really, anything in the immediate time after just feels kind of hazy at some point. She was that was one of the biggest days and really just changed everything. But how did all of it hit you? Finding out you found out for the very first time that your grandson would be having at least one heart surgery as a newborn?
Interesting. You were driving home, we were in the car too. So we got your call, and we listened. And we did not. We didn't really know what to think we did not fully comprehend all that was involved with this. We just kind of thought, Oh, poor little guy. He's going to have surgery shortly after he's born, and then he'll be okay. Okay, so we didn't understand, we really just had no real depth of understanding of what all was going on. So we thought have this one surgery, and then that would be it. That would take care of everything. I
did not prep you for how to answer that. It's so interesting to me, though, because I'm pretty sure I have said those exact words on earlier episodes. I did not know that. And I think I think it comes from the fact that our family has been so blessed that we have not had a an infant or a child go through disability or medical complexity where we never had we never understood what it is certainly not pediatric heart surgery. But really, I mean, I was healthy growing up. We never had to experience anything like that. So we had no idea what just how complex that world is and how complicated everything gets. Especially for for the babies and for the for the kids who have to experience it. You said it was something to fix. It was something to resolve
to get through where the right one and kind of what we thought and we were so sorry, he had to go through that. But we figured, okay, you know, that'll work guys Lipsky right. It'll be okay. That's right. But, well,
I've I've truly said this except it's really interesting. So throughout Luke's life, we evolved in our perspective in our understanding of his diagnosis and his prognosis. We have learned earned, that this is not something to fix. This is just our life and, and that we are moving through it with grace and gratitude. And we've learned that because we've had so many inpatient stays including five heart surgeries and recoveries, you and dad and Luke's other two grandparents sat with us in that family waiting room through each heart surgery, you visited the hospital as often as possible, make countless food and supply trips, always kept in touch with me and made sure that you were doing everything you possibly could. You heard the post surgery reports from Luke's heart surgeon, immediately after operating on your grandchild, he sometimes had successful reports, and sometimes were sharing complications with us. You've been the recipient of my roller coaster Tech's updates on Luke status, both through his pain and his perseverance. I don't know if during those times I had the mental capacity to ever ask you what it was like to be the grandparent to watch your adult kid feel desperate, and overwhelmed, defeated and terrified for their own child. Tell me about that.
I don't know if this is going to directly answer what you've just asked. Then I have been incredibly thankful to God, that Luke has you and Kevin as parents. We have, we have been so impressed with everything you have done for him. You haven't demonstrated, you know, you talk about the frustration. I know you've been through being overwhelmed, feeling desperate, but you have persevered through the whole thing you have. You've never blamed anyone or anything. You have maintained your faith. You have welcomed the pastoral support that we've gotten from church, pastors coming in and praying with us. You have given such strength to Luke, you've given such strength to your dad and me to Gavin and Monica to everyone. And the two of you have grown stronger together. And I don't know if you realize how rare that can be. But it is the two of you have amazed us. And we have been overwhelmed with how you have responded, and how you have kept the faith. You just have been grateful for all of the medical help that you've been able to get. You have. You have been encouraging to Luke, you have not looked at any of the negative aspects you have embraced the positive. I'm so proud of you. So proud. And what a wonderful thing that Luke cast you and Kevin asked his parents. I see that dedication you have. And know that he will he's gonna do okay. He's gonna do fine, because he asked you guys. No, I don't know, I know that doesn't really answer the question that you had. But it's the best I can do. Or that
we're, we're very lucky.
Isn't he wonderful? Oh, my goodness. What a wonderful child he is.
Yeah . Well, we soon decided that perhaps we could be even luckier after we received Luke's diagnosis and began to explore the options and the very complex route of what it would be to have another child. You were with us every step of the way. You knew about our journey with IVF and genetic testing, and you are with us every step of the way. Now, that technology, that science is very new. And it's definitely something that did not exist when I was born, certainly, and even these days is its cutting edge and very new. How did you feel about all of it, moving forward as we went through that process, all of The hoops, we had to jump through all of the physical and financial and emotional and mental stress that we endured, in order to find out that we were successfully pregnant, and that you would be having a second grandson.
I was so happy you decided to go that route. And even though in my eyes Luke is perfect, okay, which I think, you know, I didn't want another child to have to go through the things he had to go through. And if there was a way to help ensure that that wasn't going to be the case, then I was all for it. And that's how your dad felt, too. So I think we felt you made an excellent decision. We were sorry, you had to go through all of that. But yeah, we thought it was a great decision.
We felt very fortunate that we had your support, and that we had Kevin's parents support, you know, when we were going through all of it, we kept the circle very
small, which was appropriate, I think, yeah,
really, we didn't have a, you know, a specific, you know, well thought out reason for it, it was more just because we were, we weren't really even sure what the next step was going to be, as we were going through everything. And so we wanted to keep that circle small of who knew every detail of what we were going through. And so really, to have, you know, you and dad and to have Kevin's parents, not only to be an outlet for information, but also to be such a point of support for all of us, it's the only way we were able to get through that process. And, meanwhile, get through that process, while enduring even more complications that Luke was facing. And it actually overlapped with one of his heart surgeries that was urgent and a surprise. So you know, really, quite, quite a process to bring Ozzy into this world. And I just hope, you know, and I hope anyone who is listening, who is the support system of someone else going through this, you are so important, you were important to us. Going through this, your support was vital, and really just meant the world to us. still does.
Sometimes when I look back, it is hard to believe that it is only been five years. Yeah. That this wild roller coaster of parenthood for me and grandparent hood for you. Where it's taken us and how far it's brought us. Sometimes it feels like it's been 20 years. And sometimes it feels like it's been six months and everywhere in between. Yes, I agree. I don't think there's any Hallmark movie that paints quite the experience that you have had being a grandparent, and I'm sure you had probably a different picture in your head when you considered that you might become Nana, to Luke and Ozzie. Honestly, I don't know if I've ever seen or heard of any materials, or resources available specifically for grandparents of kids with disabilities or medical complexities. I mean, certainly not grandparents, who are also balancing that with non disabled healthy grandkids as well. It's a lot. It's a lot on you. And it's a lot that you are having to learn and adapt and really create in real time for the boys. I want to know though, what has surprised you the most about being Luke and Aziz Nana.
I guess I wasn't prepared for the intensity of the love and devotion that we have for those boys. It's really overwhelming in a very positive way. We love them both. Absolutely. Infinitely and endlessly. I've known him longer. So I've been absolutely overwhelmed with his incredible being. He's kind. He's loving. He's warm. He's beautiful. He's brave. He's funny. He's outgoing, he's intelligent, he's inquisitive. He's playful. He's been through so much, and it's impacted him in a positive way. How many four year olds can tell Take what he's been through, and turn it into something that has made him so incredible. And overwhelmed. I've learned from him, that's learned a lot. And I, I feel like I've been able to open my heart more as a result. And us, okay, I see, I'm a second child in a family that had a very gifted, first child. Okay. So I have a bond with us as a result of that. Oh, by the way, one of the things I want to mention about Luke is personality reminds me so much of you. It's like, it's the male version of you, but us is different from that is his personality is totally different. He looks just like you. But he is not he has a different personality, I have a real bond with him just knowing what it's like to grow up with an exceptional, older. So he is beautiful, he's bright. And he now has started welcoming me, he used to be a little distant with me. Because as you know, I physically cannot do some of the things that his other grandparents can do. I can't pick him up and walk around with him, I can carefully pick him up. But I can't do anything with him while I'm picking him up. But he has gotten to the point he seems to understand a little better now and has warmed up to me more. So he'll come to me while I'm sitting down and he'll reach his arms up to me. And I can lift him up and give him a hug. And he'll Oreo come and just put his arms around my legs and hug on my legs. And it makes me feel wonderful. Because I feel like he he somehow has understood that I do love him very much, but that I just can't quite do all the things his other grandparents can do. And it means the world to me. He is very special. So you have one that looks just like you when when that is just like you so couldn't love them any more than I do. They're wonderful. I did. I did have to say. As an aside, I did have to kind of laugh. You know, I called you the other day and said, I'm about to give away all of your precious clothes that you had as as a toddler. But is there any chance I'm going to have a granddaughter and you laughed at me and you said, you have Luke and Ozzy. And that's it. So talk about someone who would be a wonderful mother to 15 children, you wouldn't be. But I think two is good now.
I appreciate that.
Well, I know Luke and Ozzie are both very close with you. I love the tie between you and Ozzie as it relates to your birth order, which for whatever reason I hadn't put together until you mentioned it just now. But I think that's very special, and will continue to be as he gets older to their close with you. They're close with their other grandparents. They are so lucky to have all four of you in their lives. And here and physically close and also emotionally and mentally close with them as well. It really brings me joy to watch them get excited when they get to play with you. I love watching you guys have fun together watching you learn or read a book together. But I wonder what if you could point to one thing that's been the greatest joy for you through this rather unusual introduction? Intagram parenthood, what would you point to?
Okay, well, you know, I'm never good at finding I know, that's why I'm always telling you. One thing you always taught me and I'm, I'm trying to let me see if I can condense.
People have to understand that, you know, when someone asked me what time it is, I felt the watch right. So I would say in terms of Luke, everything about him, brings me joy. He so unconditionally loves family and friends and gentleness, his kindness, his thoughtfulness. He's just really, he's open my mind to so many things and he is so open minded. There's a very special bond with him as well. I, honestly I'd like to do whatever I can do to help him to reach his potential, because I think I think he has some very special gifts. His his friendship with people. He loves his friends, no Julian and Xander and IV fish from school. And I love how when you all went on the cruise, that he greeted everybody in the elevator spoke to people and he was only two they actually do. Yeah, yes. And I love that. I think it's important to encourage him to keep that. I think in terms of his abilities, okay. That's what strikes me about Luke is he has such wonderful abilities. his personality, his mind, unbelievable. I mean score just to he just enriches our lives. Sorry, feel that special connection. But I love the bond that we have with us the two with Luke in school now and me having more time with us. There's a wonderful connection there too. He is a delightful little child is a very different personality from from Luke. But he's he's fun. He's, he's the most fearless child I've ever seen. almost scary fear. Yeah, okay. So yeah. And being that I am not a fearless person is like
yes, he was the first child that you and dad were had to baby proof anything for?
Oh, my goodness, that's a truth to didn't have to baby proof anything for you didn't maybe prove anything for Luke. As Yes, I've had to move everything up on shelves. Everything's on the counter now because we can't have any lower shelves when he finds something or breaks it. And, you know, which we're learning. We're learning. He is an explorer and adventurer. Can this Yes. Yes, he is. He is fearless. Definitely fearless. Well,
ma'am, you and I are not fearless. No. But we are planners, almost to a fault. Right? Yes. One thing I've learned on this journey, is that we cannot look too far down the road ahead. Because this path is not in our control. We can't help but to think, plan and worry about the future. So as Luke and Ozzy grow up, as they experienced childhood, adolescence, and they move into adulthood, what do you hope for each or for both of them?
First and foremost, I want them to love and be loved. That's probably the most important thing. But I do have a lot of other things.
I thought it was gonna catch you at one, I thought I thought the one I love.
You know, I can never stop it one thing. I want them to recognize and utilize their own strengths, to capitalize on their strengths. So I think it's important for a child and an adult to take a look at what am I good at? And how can I use that to become better or to make things better. So the focus should be on the positives. They both have so much to offer. I mean so much. I'd like to see them focus on their education. You know, that's very important to me and your dad and I have always instilled that in you. And I know it's important to you, I'd like to see them develop in their faith in God to be involved in church and and to develop a support system there as well. I'd like them to focus on making life better for everyone, for anyone they come into contact with, or even, that they don't come in contact with, to be involved, to be involved in in things in their world, and to develop themselves with all the resources available. And I'd like to see them be best friends with each other. I'm glad they have each other. I'm sorry, we didn't have another child for you to be best friends with but luckily, you made friends very readily And that's good. So, yeah, those are some of the things I wish for them
some strong echoes from the values that you instilled as an early parent.
Well, I, I love those little boys so much. And they've got the best parents and I just want them to have the best life.
Kristyn, I want to ask you, what values do you feel you learned from your mother that helped you to navigate this unexpected, complex medical journey into parenthood?
I'm glad you asked this. So as we have discussed, my mom had a lot of values that she instilled in me a lot of lessons that she taught she is a natural teacher. You know, the consequence of that is having a lot of lessons to learn. As a child and as an continue to learn as an adult. One thing that my mom has always done is she has always taught through example, she never cuts corners, she doesn't excuse her own behavior while demanding different of me, she always buckles her seatbelt before she shifts the car out of park. She always writes her thank you notes. She always, always gives more than as expected. Now that I'm an adult, and I see other adults, and how they teach, or how they decide to instill values, I realize how rare and how special it is for a teacher to truly live by her lessons. So because she taught me through her actions, the most ingrained lessons that I picked up were ones that she never spoke, but that she showed me. And the one that I would, I think applies most to what motherhood has required of me is grace. Specifically grace under pressure. So, if you throw my mom, a volatile, traumatic, scary situation, she is focused, she is calm, she's level headed. As a teenager, this drove me nuts. But now, as an adult, as a mom who has experienced intense uncertainty, and trauma, who has been in life or death situations that change by the second, I am able to show that focus and that grace under pressure.
In fact, I'll even tell the short story of Luke as a young child who has faced more firsthand trauma than I could ever imagine. Now, he's still a child, he might throw a fit or cry if he has to take medicine or put his shoes on or something like that. What do you might expect from a kid. But when he was faced with fighting the ventilator after his last heart surgery, which those of us in the medical community know how scary and traumatic and painful that can be, to experience and to watch. When he was battling and struggling to fight the breathing tube to find his own breath. I saw him stop for a moment, grab my hand and study himself, all on his own. He had a single tear rolled down his cheek, a look of determination. And he found the strength and cadence to breathe on his own. And in that moment, he showed grace under pressure. And I think my mom gave that to him through me.
All I can say, Kristyn, if I have exhibited that you have doubled it. Any any positive thing you have doubled. You truly Yeah. You are a wonderful inspiration to your dad and me. Yeah. I'm, I'm just so thankful. And as I said earlier, we are so blessed that you're in Kevin or Luke's parents, because you have you have given him a wonderful path in life will be good for him. He will be able to build on the strengths. And he has many he has yes ma'am I
think everyone deserves the loving support of a mother, like Dr. Donna Cartwright.
Just a reminder to everyone, I would like to put together something special for our guest host Kristyn, it has been so meaningful to hear from you about how this podcast has impacted your life. And I'd like to forward that gift to Kristyn, in honor of all the time that she has spent with me for this very special second season. So if you've enjoyed this season, and you'd like to share some words of gratitude, and a story about the impact that has had on you, I encourage you to send us a voicemail. If you head over to our website, which is linked in the show notes, you will be able to record a short message. And I'd like to share these messages and the approaching season finale. So I ask that you try to record your message before July 1.
And thank you all for your support for sharing about this podcast and the kind messages and reviews that you've left. We appreciate knowing that this labor of love is cherished by you as well.
The beautiful music that greets us at the beginning and end of each episode is performed by my favorite contemporary music collectiveAmiina. The cover art for Atypical Truth was designed byEric McJilton.