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Infinite Love for Our Children and Endless Support to Us

Hosted by Erica Stearns & Kristyn Newbern with guest Dr. Donna Cartwright | Transcription HERE

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Atypical Truth Season Two episode cover art. Maroon-brown background with white font that reads “Grandparents” along the top, and “Infinite Love for our Children & Endless support to Us” at the bottom. At the center, framed in a circle, is the photo Luke and Oz (two white male toddlers with sandy blonder hair and blue eyes) who are sitting outside on the laps of their grandparents. Luke is stretching his arms out wide and everyone is smiling.
Atypical Truth Season Two episode cover art. Maroon-brown background with white font that reads “Grandparents” along the top, and “Infinite Love for our Children & Endless support to Us” at the bottom. At the center, framed in a circle, is the photo Luke and Oz (two white male toddlers with sandy blonder hair and blue eyes) who are sitting outside on the laps of their grandparents. Luke is stretching his arms out wide and everyone is smiling.

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.

#raredisease #noonansyndrome #grandparents #medicallycomplex #heartwarrior

#heartwarming #CHDAware #chd


Episode Transcription

Donna 00:03

I'd love to have more conversations like this.

Kristyn 00:05

I was gonna say my mom's gonna schedule like a zoom call every, like a deep reflection zoom call,

Donna 00:11

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

Erica 00:42

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.

Kristyn 03:15

Well Mom, I am so happy to have this conversation with you today. Let's start with some rapid fire questions.

Donna 03:23

Well first, before we do that, I want to tell you, I feel honored that you want me to do this.

Kristyn 03:32

Thank you. Okay, what food sparks a joyful memory from childhood.

Donna 03:41

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?

Kristyn 04:28

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?

Donna 04:41

Their eyes, their smile, if they are warm with other people. If they're welcoming,

Kristyn 04:51

which room in your house do you spend the most time in?

Donna 04:56

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.

Kristyn 05:34

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.

Donna 06:04

And I appreciated that I was I felt a little guilty, but I was really glad.

Kristyn 06:11

I think peanut was the happiest.

Donna 06:15

She was the queen of the house. Yes, she was.

Kristyn 06:29

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.

Donna 06:41

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

Kristyn 09:31

I know we voted part time because selfishly we wanted as much of you as we could get so it worked out.

Donna 09:38

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,

Kristyn 09:57

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?

Donna 11:01

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.

Kristyn 13:06

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.

Donna 13:19

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,

Kristyn 14:28

all those things. Just a few small things, right. Just

Donna 14:32

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

Kristyn 14:55

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?

Donna 15:25

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.

Kristyn 16:18

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?

Donna 17:29

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

Kristyn 18:14

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

Donna 19:16

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,