Growing Up Normal

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From Beta Cell, this is The 3s, the show where we try to find out what it's like for all the people in our lives who don't have type one, but are affected by it somehow. I'm your host, Craig Stubing. The saying goes, that there is nothing as powerful as a mother's love. But what happens when type one diabetes enters the mix? How is that love pushed and pulled, tested and strengthened?

Carol had all the responsibilities that a 13 month old brings when her daughter, Kristi, was diagnosed with type one. As if taking care of a baby wasn't hard enough already, Carol had to test her daughter's blood sugar, count her carbs, give her insulin, and never let her guard down. As Kristi grew up, she took over management of her diabetes. But there was a tension between how Kristi wanted to do things, and how our mom thought she should do them. Kristi, now 27 years old, interviewed her mom at her mom's house in New Jersey. Let's hear their story.

Kristi: Hi, my name is Kristi. I'm here with my mom.

Carol: My name is Carol. I'm Christie's mom.

Kristi: And we both live in northern New Jersey. And I've had type one diabetes for almost 27 years.

Carol: Yep. Christie was diagnosed at 13 months old, which was a shocker. My husband and I did not know much about diabetes. I just knew that something wasn't right, and thankfully, we had a great pediatrician that picked up on it. So we were off to the hospital in New York and spent a week there, learning, which was very scary for us.

Kristi: So what - that, uh, you said at first, that they didn't really know what was wrong. Before the diagnosis. What - what was the big sign for you that something wasn't right?

Carol: Well, she - she had a cold for about a week. She wasn't herself. But I think the biggest thing was she was lethargic, waking up, asking for juice, standing up in her crib, urinating a lot. The first time I took her to the doctor was on a Saturday, and that pediatrician part of the group just said that she had a little virus, noted that she did lose weight, but it was no big deal. The following Monday, I looked at my daughter laying there like a rag doll drinking her bottle, and I said to my husband, "Something is not right. I'm calling them back," and that's when the pediatrician that I saw a lot said, "Come in; we want to do a urine test," and that's how they discovered that she had diabetes. I had to call my husband, who was quite agitated when he came in, asking the doctor, "Does that mean she's going to be on insulin for the rest of her life?" So, it - it was very hard, you know, driving to the hospital; I became the strong person, you know, to my husband, who was pretty much sobbing the whole way driving to the hospital in New York.

Kristi: So what was that experience in the city like? Like, what were your...?

Carol: Well, first we were in the emergency room, and then an endocrinologist came to speak to us and said, "Oh, okay, you've cried all your tears. This was - this is what's going on." They put us in intensive care the first night because she was so young. She did not have ketones, which was surprising. And I stayed overnight in a chair. And you're taken very good care of in intensive care. Once they moved us to another room, it was not a great experience, because she was starving, number one, crying, and the food they were bringing her, it was ridiculous. She was 13 months old; they were bringing her a hard boiled egg and this huge bagel.

Kristi: Gross.

Carol: I ended up going in the hall and screaming at a bunch of doctors randomly going around the hall. But it was basically they were, you know, trying to bring her sugar down, giving her little bits of insulin. And then my husband and I would have to go to classes about nutrition and how to give shots. And, at one point, it became so overwhelming, my head was spinning, that I walked out of the room and locked myself in the bathroom. And I thought, "I can't do this; a nurse is going to have to live with us," because it just was crazy.

Kristi: At that time how, like, how would you say that life changed from the way life was, before I was diagnosed?

Carol: Well, I remember saying to my husband, "Well, we'll be going on all family trips, you know, we're not going to go when we're alone," because I couldn't imagine leaving my daughter with anybody. I remember the first day we got home from the hospital, my mother in law was here. And it was time to give her a shot. And my mother in law got hysterical. And the hard - the hard thing was at that age, you - you don't know, "Is your child high? Low?" because they're not verbal. You know, the doctors, the endocrinologist, who was wonderful, we were on the phone, probably four times a day adjusting things, you know, we finally decided to have her eat first, then give the insulin, because with the baby, you never know how much they're going to eat. So that was very stressful. And also, you're on, you have the structure, you're on a timetable at that - at that time, with the two different insulins, long acting, short acting, you had to eat at certain times.

Kristi: Right.

Carol: And you had to know the carbs. So that was a big change. No fly by the seat of your pants.

Kristi: Yeah, so this was back in the days of, like, sliding scale.

Carol: Yes.

Kristi: I kind of remember as I was a young kid, the taking the NPH and the Humalin, and having to eat at certain times throughout the day, and there was no Dexcom.

Carol: Mm mmm.

Kristi: What do you think, like, when you see all these little kids now with the Dexcom? I mean, how do you think that would be different? I always wonder how - if it would have been more stressful for you and Dad, or less stressful?

Carol: I think it would have been just as stressful, you know, to have that technology. I think it's still stressful, you still have to - you have to learn a lot. And you really do almost become the doctor.

Kristi: Mhm.

Carol: I remember them telling me that in the hospital. You know, you just wonder, wow, is there going to be a light, you know, at the end of the tunnel?

Kristi: What were, like, your biggest concerns for the future? I was just a little baby, but what were you worried about?

Carol: Well, I remember we had a male nurse come here to do a little education class for close family and friends, and one of the things I asked him was about drinking, you know, as a teenager. Had his drinking affected? Do you drink? You know, he was diabetic. Things like that. And of course, college, the biggest hope was, "They're going to find a cure by the time my daughter comes to college."

Kristi: Did anyone tell you that that would happen, or were you just hoping for it?

Carol: The big hope then was the Dream Beam, which was going to be an infrared light on your finger that would test your blood sugar.

Kristi: Really?

Carol: No more finger sticks. It was, like, a big thing, and then we didn't hear anything for a couple years. Then there were a couple of things with this huge machine, so I guess that was the start of all the technology to come.

Kristi: I never heard of that. I don't remember that -

Carol: Yeah, they - I remember hearing about that right away.

Kristi: Were you mad when it didn't actually come out?

Carol: Yeah, you know, you get mad, you know, your hope for a cure and the research and, you know, you just think the drug companies are making too much money with the test strips and all that stuff.

Kristi: Yeah. How did it affect.... I have a - Joey. He's my older brother, five years older. He was obviously, what, five or six at the time?

Carol: Yes.

Kristi: I mean, how did that - did that affect him at all? Or?

Carol: It really didn't. In the beginning, he said, "Is Kiwi going to be okay?" because that's what he called you. His grandparents - when we were in the hospital, he was by all his grandparents, and they were buying him presents, so he was having a great time. I guess, I don't think it affected him too much. We - one of the trips we took to Camp Nejeda, Kristi was very young, and it was more enjoyable for him because he got to play basketball and do all the sports with all the counselors. And he became a sharpshooter, because they let him give himself a shot in the knee. So I guess there was a little bit more understanding there, but he actually cried when we left camp.

Kristi: Yeah.

Carol: He had such a good time. You know, it was such a wonderful place to meet other parents and other children that have diabetes, and over the years, of course, my daughter went there every year, then became a counselor, and it was a big part of her life.

Kristi: Yeah, I mean, camp, I think was a big part of my whole relationship with diabetes. I feel like it would have been a lot harder if I didn't know all those other people who had it. And, I don't know. I mean, I remember you were nervous the first time you left me there on my own, but then after that it got easier, right?

Carol: Yes. Yes. And, you know, I'll, I'll admit, it was a nice break for us.

Kristi: Yeah.

Carol: Not to have to think about preparing meals, and carbs, and testing, and getting up at two o'clock in the morning. I think parents need that.

Kristi: Yeah. I know something else we talked about was, right around this time was when Steel Magnolias came out, which I still haven't ever seen the movie.

Carol: I don't think you need to see it.

Kristi: But what, like, was that the first thing? I mean? Was that really the only...?

Carol: Yeah, well, I, yes, I did - I did bring that up in the hospital. And I remember saying to the endocrinologist that that was the only thing I really knew about diabetes. And she kind of commented - I think her name, I don't know the first name, Ginsburg was the last name - the head of Pediatric Endocrinology actually had a relationship with the director of that movie, and was very angry the way it was portrayed. Well, yeah, it wasn't a good portrayal of things.

Kristi: Is that how you thought my future would be?

Carol: Well, I worried about it, because, you know, the Julia Roberts character has a child, and then when she wants to get pregnant again, the mother doesn't want her to get pregnant again. You know, because she's risking her life. And I don't think it's like that anymore today. I know, plenty of people that have multiple children that have diabetes, you know, it's just a matter of being in good control and having the right doctor.

Kristi: I mean, what do you think - how, what really, like, changed your ideas about diabetes over time? Like, what helped as a parent with a kid and not knowing anything about diabetes?

Carol: I remember when we were in the hospital, a teenager came in, that had diabetes, speaking tough. So I think that's reassuring, to see this girl grown up; I think she, you know, was diagnosed at a young age. To read a people - you know, read about people a lot older, you know, that have had it for a long time. So, you know, you just - you have to focus on the positive and do the best you can, and you have to block out negative things, you know, you can't start reading all the negative things. There are some people that love to tell you that, "Oh, yes, I know about diabetes; my uncle had his foot amputated," or blah, blah, blah, and there's really a lot of ignorance out there, I have to say.

Kristi: Did you get a lot of that when I was little, a lot of stories like that?

Carol: I remember, I was working part time in a department store, and I don't know how the conversation came about that this woman's son died in - at a young age from diabetes. "Oh, his sugar, blood sugar was 900. It was like syrup. And, you know, it turns out he didn't take care of himself." That was, you know, and at this point, I had said something, you know, my daughter was diagnosed with diabetes, like people don't stop and think what they're saying. I remember going in the parking lot and crying. You know, so - so from at that point, I just, if somebody starts I'm like, "I don't need to hear this. No, thank you." Because people just don't think. You really have to think what you're saying.

Kristi: Yeah. I mean, being a person who doesn't have type one, how much, like, what - how do you feel like - it's still, obviously, I feel like with parents, it's - it changes your life in a different kind of way than, like, if you were my, like, boyfriend or husband. Like, how do you feel like it changed your life, even though you don't actually have it?

Carol: Well, I know if I hear of other parents whose children are diagnosed, I, you know, I like to think that they could come to me and ask me any questions, you know, thing - things like that. It just, you know, makes you realize that there's - people have things you may not know about, you may not see. Somebody could have a chronic illness, and you don't know it just because it's not visible.

Kristi: Uh huh. I remember when I was little in school, you used to come into class and tell, do a whole spiel with the classroom about what, like, what type one was, and you would read, like, a book and show a video.

Carol: That's all, we would do it together.

Kristi: How did that get started?

Carol: I think in third grade with Mrs. Schweiker, and I - because the other children, were starting to ask questions and be curious. And, you know, why someone had to go down to the nurse with you. So at that point in third grade, there was a good time to do a little science lesson to explain, and Mrs. Schweiker was all for it. So we did a whole thing. And you know, another thing that happened, there was another child diagnosed, and her mother happened to be a nurse, and she actually brought - an endocrinologist nurse came into the school, and educated the entire staff. The principal insisted that everyone come. And, you know, I do remember someone saying, "Well, I don't have anybody with diabetes in my class." And we said, "Yeah, but someday you may."

Kristi: Mm hmm.

Carol: You know, there's just - they just don't understand it.

Kristi: Yeah. There's kind of, like, an unwillingness to learn.

Carol: Yeah.

Kristi: If you don't have to.

Carol: Yeah, absolutely. And even a lot of nurses. I mean, I really, Kristi and I had to educate the school nurse, who was wonderful, who was there, for Kristi's whole time, and very accommodating, but I had to educate her and type up notes and everything and make sure everything was done right. Because she wasn't used to dealing with that.

Kristi: Yeah.

Carol: There was one student but, like I explained to the principal when Kristi was first going into school, kindergarten, and I went in there and said, "You know, Kristina has diabetes." He kind of shooed me away, said, "Oh, we've had a diabetic student before." And I said, "Wait a minute." I said, "Everybody is different. Everybody's endocrinologist treats it different. So we will be coming in with a plan for my daughter," and he backed off, you know, he just didn't realize.

Kristi: Yeah, yeah, I think, I mean, a big part of being a parent, like you said, is, like, you kind of are the doctor, and you are the advocate, or you -

Carol: Yep.

Kristi: - hopefully are. I mean, you kind of have to be -

Carol: Yep.

Kristi: - even, no matter what grade I was in. How, I mean, I think it was pretty hard for both of us when, as I got older, and became a teenager, and had to, like, transition some of that care to myself.

Carol: Yes. That was hard, because you were on the pump, then you - then you wanted to go off the pump. Every time it was time to change your infusion set, there was a big scene in the house, you didn't want to do it. So then you went off of it for a while. And then that became a little scary, because, here I had just learned everything about the pump, then - then I had to, you know, remember everything from doing shots. You know, that was - that was a bit much, but, and you know, letting go of certain things, maybe like your first sleepover.

Kristi: Yeah.

Carol: Educate - you know, if you're going to sleep somewhere, I had to educate the parent.

Kristi: Yeah.

Carol: Sometimes I would bring your own snacks.

Kristi: I think I got to experience pretty much all of normal teenager, young adult stuff, though.

Carol: Yes, no, we never - you, you did dance lessons, you played basketball, you played soccer. But when you were young, I was always in the background, hovering, I have to admit. So you may have had, like, a little less freedom than someone that didn't have diabetes, for instance, riding your bike around the lake at a certain age.

Kristi: Uh huh.

Carol: But I even did that with your brother, because I, you know, just a little bit more overprotective. You know, there was a situation, and I remember thinking about it for years. We live in a lake community where they have activities. And the big thing, I think at age 13, they take a trip down the shore on a bus and go to the beach and Point Pleasant. I was terrified when that day came, and I just said to one of the counselors, I said, "I'm going to be following in my car," because I want to - I didn't want to be on the bus with her, of course.

Kristi: Mm hmm.

Carol: And I kept my distance on the beach, and I was kind of happy, because the younger counselors who were really watching, were not really paying that much attention. It's the ocean, you have a pump site, blah, blah, blah. I kept my distance, but it ended up kind of at the end of the day, her site got clogged with sand.

Kristi: Yeah, yeah, I remember that.

Carol: And we ended up going to the car.

Kristi: I had to change it.

Carol: Changing the site.

Kristi: Yeah, the ocean -

Carol: So that was a stressful day.

Kristi: Was that more stressful than, like, when I went to Washington with the eighth grade trip?

Carol: Um, that wasn't as bad, because I like the nurse that was going.

Kristi: Right.

Carol: You did not want me to be a chaperone, but one of my good friends at the time went as a chaperone, so that - I was okay with that.

Kristi: Yeah. What about, I mean, going to college?

Carol: Going to college was another scary thing. You know, we went, and we did a tour. But what was the relief when we went to visit the dorm that she was going to be staying in, the RA -

Kristi: He was an EMT.

Carol: Yeah. I said to Kristi, "You have to tell him. People have to know. It's not a secret." Yeah, so, that - that was good that he was an EMT, I felt better. You know, what was I going to do? Just say you can't go to college because you have diabetes?

Kristi: Some people do that.

Carol: They do. You know, but things can happen anywhere.

Kristi: It's definitely true. Yeah. I mean, I feel like you didn't seem super worried when I went to college about that. I felt like diabetes was just kind of a part of all of the other stuff you were worried about. Like, I think over time, we were able to kind of balance it, and - and blend it in to all the other parts of my life.

Carol: Yes, we got through college. You were an excellent student.

Kristi: Eh, I was okay. I was pretty good.

Carol: You are. You kept up your grade point average. You got your Masters, and, you know.

Kristi: Yeah. I mean, and yeah, I always think that, you know, being a social worker, partially came from having diabetes. I mean, what do you think? How do you think me having diabetes affected me?

Carol: Yeah, I think it made a - took a hand in the choice of what to do. I think you always wanted to help people. You know, I think when you became a counselor over the summers, that actually helped make your decision, too.

Kristi: Yeah.

Carol: Because you were helping people.

Kristi: Yeah, I think, yeah, camp played a big role in that, too. But what do you think was, like, the hardest part of having? Like, what do you think - that me being a baby was the hardest? Or me being a teenager? Or?

Carol: Um, I guess I have to say both.

Kristi: Both were equally hard?

Carol: Baby, of course, was very hard when you cannot communicate. Yes, it was extremely stressful. I, you know, to this day, I don't sleep great. You know, you just don't sleep. And, but, I guess the teen years, where you really had to go out on your own, you know, was - was a little bit stressful. At the time, you know, and I guess going to college a little bit, because I don't know what's going on all the time. The thing is, I guess when I had to let go, when it became your thing to take care of and not mine. And I think having you not wanting to listen to my advice if I would suggest doing certain things to manage your blood sugars, "We used to do this." That was very hard. You know? And I remember saying to your endocrinologist, "What is she going to do? She's, she's going to go to college," and I'm going to say, "Oh, I'm done. And not think about her blood sugars anymore? That's not the way it's going to go." And since I've been doing that, since you were born.

Kristi: Yeah.

Carol: It was - it was my thing to take care of. Not my daughter's, she didn't know what was going on. So I think it's perfectly normal. You know, even now, not so much, because you moved out on your own. You are, you know, in good control. You know, there's certain things I would love to tweak. You know, sometimes we bicker about that. But it's out of my hands. Pretty much.

Kristi: Yeah. Is that hard, being...?

Carol: Yeah. I'm - I am the type of person that likes to being in control. And I'm trying to remember, was that - did it become more intense after I had a child that was diagnosed with diabetes? Because -

Kristi: Probably.

Carol: I think, probably, and I - but I think my personality suited, certain personalities are better suited to take care of a child with diabetes. You have to be organized. You can't be fly by the night and be whatever, because it would affect your child's health.

Kristi: Yeah. Yeah. Well, how do you think your relationship to my diabetes is different than Dad's?

Carol: Well, because I think about it more. Dad's.... He certainly took a big part, you know, it was hard for him to give shots, because he's someone that had to lay down after having blood taken when we got married, you know, he's not good with shots, but you rise to the occasion. It's your child, and you do what you have to do.

Kristi: Mm hmm.

Carol: But of course, I was the main caretaker of it.

Kristi: Right.

Carol: At, you know, abs - absolutely. Because I was a stay at home mom, I worked at night, you know, left millions of notes, and list, and food, and, you know, that was it. But, you know, in this relationship, Dad had to go to work every day, support the family. And even about any of children, I think moms tend to worry more.

Kristi: I mean, it almost seems like Dad's primary role was the financial role of taking care of -

Carol: Yeah.

Kristi: - not just me, but, you know -

Carol: The family, you know?

Kristi: - the family. I think that does happen in a lot of relationships, that one parent is the primary medical caregiver.

Carol: Mm hmm.

Kristi: Do you, I mean, we watch me now taking care of myself. What - do you feel like you've done your job? Or I've done my job?

Carol: Yes, yeah, I certainly do. I mean, your A1Cs are good. Yeah, you don't - you do take care of it.

Kristi: But more than that, I mean, I think sometimes people focus too much on the A1C and the numbers -

Carol: I think I wish you would eat better. And this is a constant argument. You tell me, you're certain, you - you've grown that way, there are certain choices that I like I'm saying, but then there's certain things, because you read up on everything, and read this and that and that. I almost wish you would read up more. On the way different foods affect your body. I don't know, you know, or what, you know, one thing I wish there was a better plan to treat your lows, and there, you know, and be more comfortable with going a little bit low, you know.

Kristi: Right.

Carol: You know, I see you constantly having to drink juice, and you're always saying, "Well, I have insulin on board, insulin on board." And, you know, I'm thinking, "There's got to be a way to tinker with that." But I don't know, you know?

Kristi: Yeah. What would you say to a parent now? Or, I guess any parent who just had a child diagnosed with diabetes?

Carol: Well, I do tell them, there is a light at the end of the tunnel. You know, there have been a couple of people I know, from town, you know, it happened at 12, it happened at 13. And you know, one person really going through a hard time with her daughter, who, at that age to be diagnosed, they're not doing what they're supposed to do. So I - I mean, I'm fortunate in that way, where you didn't go through that phase where, you know, "No, I don't want to go to the doctor, and I'm not testing my blood sugar. I'm not doing that." So thank God for that. Because I feel for those people. It's - it's very hard.

Kristi: I think I had a little bit of that. You might just be blocking it out.

Carol: Not too bad. Maybe, I don't know.

Kristi: Tell, tell - talk about the tent story when we went camping.

Carol: Well, that's when you were little, I don't - maybe, like, four, four, three? I don't know, you were very little. But you know, you woke up, and I guess we had to test your blood sugar, and you were crying. And you were saying, "No, it hurts. It hurts." And some big guy and his wife walked, like, like, opened the tent and said, "What's going on here?" Because I could imagine how it sounded. And I said, "Oh, my God, it must sound - Oh, my, so, my daughter has diabetes, we're testing her blood sugar." He goes, "You know," but I said, "No, I perfectly understand."

Kristi: Yeah. Kind of makes you happy that there's people like that out there.

Carol: Yeah, absolutely, that get involved. I would probably do the same thing, you know?

Kristi: How did Dad feel about it?

Carol: He was fine.

Kristi: It wasn't...?

Carol: Yeah, no, no, he was fine.

Kristi: I know. Sounds - it's been a - it's been a journey.

Carol: Yeah.

Kristi: I think you guys did a good job.

Carol: Well, that's nice to hear.

Kristi: I mean.

Carol: I mean, and I have to say, teachers, you know, the nurse, even someone from nursery school, if I run into them, you like, the - the woman in nursery school, "You just wanted Kristi to grow up like everybody else and have a normal life," or, "You did such a wonderful job." You know, so it's - it's nice to hear that.

Kristi: Yeah. I think I grew up like most other people.

Carol: Yeah.

Kristi: It's a good -it's a good balance.

Carol: Mm hmm.

Kristi: Well, is there anything else you want to share?

Carol: Well, I guess now the next phase, you know, want - want you to stay healthy. It'd be lovely to have grandchildren someday, and you know, be there for that, and any support you need, you know, managing the diabetes. You know, when - when you get pregnant someday, stuff like that.

Kristi: Yes, I think I'll definitely need your help with that.

Carol: Yep, I'll be here to help.

Kristi: Someday far in the future. Okay.

The 3s is a production of Beta Cell, and it's produced by me, Craig Stubing. A very special thanks to Kristi and her mom, Carol, for sharing their story. You might be out of Beta Cell episodes to listen to right now. But if you join the Beta Cell fan club, you'll get access to a lot more content, bonus clips, outtakes and even every episode of Out of Range After Dark, our podcast just for fan club members. Visit Beta Cell podcast dot com forward slash fan club for more information. I'm Craig Stubing. And this is The 3s.