Episode 23 –
Parenting a Child with Illness with Stacey Simms
“With a chronic condition, you have to weigh the risk and the benefit. So we’re always weighing that, especially as he’s older now. Okay, is it more important that he learn independence, responsibility, and confidence, or is it more important that you have a perfect blood sugar today? And that’s something that everyone has to decide for themselves in my opinion.”
Stacey Simms’ son was diagnosed with Type 1 Diabetes before he was 2 years old. In this episode of the Raiseology Podcast, she shares her experience parenting a child with a chronic illness throughout the years.
Are you parenting a child with a chronic illness? Let us know how we can support you in the Raiseology Parenting Facebook group!
Find Stacey at StaceySimms.com and tune into her podcast, Diabetes Connections! Thanks for listening!
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I really enjoyed recording today’s episode of the Raiseology podcast. I speak with Stacey Simms, who I’m going to introduce in just a few moments and I really found her story to be quite inspiring. I hope you do as well. Stacey Simms is the host of award-winning podcast, Diabetes Connections, and was named one of Diabetes Forecast Magazines 12 people to know in 2017. Stacey’s son was diagnosed with type one diabetes in 2006, one month before he turned two and Stacey started blogging about her family’s experience with type one diabetes a few weeks later. For more than a decade, she hosted Charlotte’s morning news on wbt am the city’s top rated morning radio news show. Stacey has been named to the Charlotte Business Journal’s 40 under 40 and as one of the 50 most influential women in Mecklenburg County by the Mecklenburg Times. That’s quite an impressive resume, Stacey. Thanks for being here.
Stacye: Oh, thank you so much for having me. Yeah, thank you very much. I appreciate you saying all that. Thank you.
Sharon: Yeah, so you know, we have you on the show today because we want to hear your story and we want to talk a little bit about your experience with type one diabetes and also your experience with parenting a child with a chronic illness. So do you mind telling us a little bit about your story? I know it’s been quite some time now and you now have a team, but your story about when your child was really just a toddler.
Stacey: Sure. Yeah. So Ben, he was diagnosed as you said, right before he turned two and that was in December of 2006. I have been a health reporter on television and in local radio news for awhile. So I knew the classic signs of diabetes, but I didn’t know anything else. Um, he was really changing. I mean, you know, your, you know, your toddler, you know, your baby and I have an older child as well. My daughter is three years older than Benny. So you know, we’ve been through this before in terms of toddlers getting older, you know, going through the terrible twos, that sort of thing. And this was really different, so he was drinking nonstop, could not quench his thirst, he was peeing all the time, could not keep him in a diaper. And that was very different. And I knew that, I just knew that that was the basic signs of type one diabetes. He was really cranky. He was having tantrums very different than the happy kid that we had been raising up to that point. So I called my pediatrician and she said, I’ve never seen type one in anyone younger than two, but bring them in and we’ll rule it out. So we brought them in and they did a fasting glucose test on him and his blood sugar was in the very normal to low range. It was 80, which if you’re familiar with blood sugar levels is great. And that’s when I’ve got a little worried because what else could it be? So we spent a few days trying to figure out what. I spent a few days googling dumb things and scaring myself. But the doctor spent a few days doing more tests and then of course they did a more in depth blood tests. And we found out that he did indeed have type one diabetes. We spent three days in the hospital, traded off taking care of our then five year old daughter at home and went home with a brand new life, it was unbelievable. And the learning curve was so steep. So that’s a very shortened story of what happened almost 12 years ago now.
Sharon: Yeah, I mean that is definitely a life changing experience. I know one of my colleagues, I’m just before I left practice, her son was also diagnosed with type one diabetes and it was a really, I mean, life-altering diagnosis and you know, thankfully we know that the prognosis for kids with type one diabetes is great, but it definitely changes their life and yours, um, especially when your toddler is, is diagnosed because you’re basically managing everything. Um, can we go back a little bit? I would love to hear a little bit more about what kind of behavior changes you saw and how you felt sort of sure that it wasn’t just normal toddler behavior changes because what you’re describing with the tantruming and crankiness is something that, you know, I hear from parents every single day.
Stacey: Well, it took us awhile to get there in. Let’s see, probably in mid October, my husband called me at work. I worked morning radio at the time, so I left the house around 3:30 in the morning and my show was five to 9:00 AM. Every morning my husband would text or call and kind of say all is well at home. Here’s something funny the kids did and then he took them to daycare and went on. But he always always checked in with me around 7:00. So he texted me one morning and said, you’re never going to believe how much pee came of this kid. And I kind of laughed, but the bed he’d with the mattress you like, it was under the crib floor. It was unbelievable. And I texted back something like, Haha, glad I’m not home. And then we, we went on with our lives, we didn’t think anything of it, and two weeks later it happened again and that was really the key because I don’t remember again, it’s almost 12 years ago now, I don’t remember the behavior changing so much until about a month before we got the diagnosis.
And that, that amount of urine coming out of your kid is something that really makes you sit up and take notice. So we already were kind of thinking in that way. And I’ve had friends say, well, my kids really thirsty all the time, you know, could you have diabetes? And then when we think about how much the kid is actually drinking, generally speaking, this is just somebody who’s exercising a lot or is really thirsty. But when your child is, is 20, he’s, he was 30 pounds. And in fact we found that he had lost three pounds over the last, uh, over the two months before he was diagnosed. Which is a significant amount of weight for somebody that little. Yeah, sure. When you’re, when you’re a little toddler is drinking, uh, I guess I’ll say a 10 ounce sippy cup. If he’s drinking that in less than two minutes, giving it back to you and asking for more, that’s the difference. It’s not a question of, well, he had three cups of water in two hours after he played soccer. He had 3, 10 ounce cups of water in 10 minutes and it was still thirsty. We can’t drive in the car from here to target because he’s got to stop to pee two times. Yeah. So desperate for a drink that he ran over to the neighbor’s house and drank out of the garden hose. You know, it’s different if you’re worried there are definitely tests and things that you can talk to your doctor about it. And I would urge people to, if you’re, if you’re thinking it at all to get a, to ask for a blood test, um, at least a finger stick. But generally speaking, it’s not just the crankiness. It was laying on the floor falling asleep during activities that were fun for him. Um, you know, just really unhappy, uncomfortable kid.
And the day and night change after he was diagnosed and got the treatment has been still, I remember thinking I got my kid back, you know, he had to oh, much better.
Sharon: So tell us about sort of how your family structure and you know, life with a five year old, which is still really a very needy age and a two year old with a new diagnosis really was.
Stacey: Is it okay if I just jump in and explain what type one is? Oh yeah, of course. So your listeners probably know a lot about it, but just to kind of make sure we’re on the same page because I, to answer this question about our family dynamic, we all have to kind of learn because my husband has type two in his family in older relatives and things, but we didn’t, we don’t have any diabetes on my side of the family and we didn’t have, we didn’t really know anything about type one, so very, very basic, very layman’s terms, the differences in type one diabetes the pancreas doesn’t produce insulin, it might produce teeny tiny amounts, but that’s still in research and they’re seeing if anybody’s pancreas still works the way it’s supposed to that way. But generally speaking, it doesn’t produce any insulin. Insulin is what we all use to break down the energy from our food. It breaks down the sugar from whatever foods you eat. That’s what your body uses for energy, right? We tell little kids, you know your food is the fuel that makes your body go, but you can’t use it for fuel if you can’t break it down, and if it can’t break it down, that sugar stays and circulates in your body and it’s toxic to your organs. And it’s not toxic in the way that we think of, well, sugar’s bad for you. It’s toxic in the way that without insulin you’ll be dead within weeks. If that long. It’s very scary. So when you have type one diabetes, you must take insulin and you don’t just take it when you eat, you must have constant infused insulin just like our working pancreas is do they’re, they’re pushing out insulin right now. We don’t think about it. We don’t have to tell it to do anything. So people who are type one can take insulin shots or use a pump and they do basically the same thing in different ways, but you’re on insulin for the rest of your life. No amount of exercise or eating better is going to change that. Type two diabetes your pancreas still produces insulin, but for many reasons your body doesn’t use it very efficiently. So, um, you know, you hear that term insulin resistance quite a bit, so your body’s putting out insulin, but for genetic reasons, sedentary lifestyle, overweight, doesn’t have to be just those, you know, we think about the stereotypical overweight and no exercise you can be, you can look healthy and you could run marathons and still have type two diabetes, but your body doesn’t use it the same way. Type two is often treated by changing those lifestyle factors, but also people may need other medications, insulin or medications that make your body use insulin in a better way.
So that’s the quick snapshot. So that’s really what we had to learn is what the heck is type one really. Because as I said, I knew the symptoms kind of. But as a health reporter who covered a bunch of, everyday was a different health story, I didn’t really have a good education. And then, you know, how do we do this? What do we do with our kid? How do we give them shots? How do we check his blood sugar? How will my five year old help? Will she resent the attention? I mean, there’s a lot to unpack there.
Sharon: Absolutely. That was like a really great explanation of diabetes, thank you.
Stacey: I always try to do that because you never know. I mean, most people kind of understand it. I know I didn’t before we were really in this world. Um, and since my son was diagnosed a few years later, an older cousin of his, he was also diagnosed on my side of the family, so we have type one in there somewhere. Um, but who really knows.
Sharon: So how did it work out when you were making all those changes?
Stacey: Well, it was very scary for a few days as we tried to figure out what it meant. We knew a few people. Again, from my experiences in local media who had kids with type one and at the diagnosis, we were very fortunate because we had interactions with people who’d been there, so our one of the nurses at the hospital, not our nurse, but a nurse who I’ve come to realize does this, poked her head into our room and she said, hi, I have type one. I’m pregnant with my second child. I just wanted to combine say, life is not over. Your kid’s going to be fine. Don’t change your life. It’s going to be okay. Bye! And then our endocrinologists, who we’d never met, came in and he was amazing. He came and he sat right down on the floor and played with Benny who was my son, Benny, who was feeling much better by that point and said to us, don’t change your life. Make diabetes fit into your life. It’s going to be difficult, but you’ll be really happy in the long run that you did it because if you start these changes now, you’re going to realize in less than a year that you didn’t need to and it’s going to be hard to backtrack. So we said, okay, but then I thought, should I quit my job and stay home? Should I pull them out of daycare? Both of my kids were in full time daycare. My husband and I both worked and we worked crazy jobs. I had the media job. He owned a restaurant, so I was never home in the morning. He was never home at night and uh, we didn’t know what to do, but we said we’ll take it a day at a time. We’ll figure it out. And we were very fortunate. We educated ourselves, we had great supportive people who taught us what to do. I’d never given a shot in my life. My husband had given shots to his mom, so he kind of had the advantage there of those squirmy two year old is a little different.
Sharon: Yeah, totally.
Stacey: Oh my gosh. So they wouldn’t release us until they saw us, you know, we are able to give shots and I will never forget how awful that was. Um, it was a horrible two weeks. I described the two weeks when we went home as screaming, crying and sweating. And that was mostly me because I had to hold him, you have to check blood sugar by sticking your finger and we did that like eight to 10 times a day, including when he was sleeping and then we had to give him shots and every. There are different ways to manage type one. An older way, I’ll say, although it was whatever works for you. I have learned over the years that everyone with diabetes handles it in a different way. An older version is you take one or two or three shots a day and then you kind of plan your meals and your activity to your shots. A newer way is you plan your shots to your activity and that’s what we were able to do. He took one shot that was long acting and that was kind of like a 24 hour time release. Another kind of insulin that was short acting that he did whenever he ate. And whenever his blood sugar was a little higher than it was supposed to be. And so when you have a two year old, a lot of them will graze like our kiddo did. And this made it a lot easier because we were able to let him do that and continue to eat how he had been eating and give him the shots. Now, first it was horrible because I kind of felt like, well maybe I shouldn’t give him that food because then I have to give him a shot, you know, maybe I should just give him carrots or celery all day long. Right. That didn’t work and he didn’t care. But at the end of the two weeks, as long as he didn’t have to stop playing, he would just lift up his arm and he’d stick out his leg. I mean, he really didn’t care about the shots at all. It was amazing how quickly you got used to it. And I think part of that was because of the advice we had been given, which was treated like brushing your teeth. Don’t change your routine, don’t change your life. I would go in the closet and cry, but in front of him it was, hey, this is it. We’re doing this. Hey, let’s go. And it was unbeliveable.
Sharon: Yeah, I mean, I, I can, I can imagine that at that age it’s very difficult, although, you know, kids often surprises how much more resilient they are about these things and we are.
Stacey: Yeah, it was, um, it was quite the education and I think at any age it’s a very difficult diagnosis because you, your, first of all, you have to, you have to change what you’re doing, right? You have to do all these shots or, or even with an insulin pump and we can talk about that. Um, there’s a, there’s a lot of maintenance, but you know, if he’s diagnosed older than he remembers what came before and I think that is a difficult adjustment as well. So it’s, you know, there’s never a good time but um, but it was, it was kind of a type one and toddlers, this is just crazy town. Even after they get used to it because they’re growing their needs, their insulin needs change, their food changes, it’s their activity changes. There’s no, there’s no stability.
Stacey: Yeah. I mean, I’m sure it took years before you guys got into a group that was much easier to handle. And how did your five-year-old handle the diagnosis and um, and sort of the change in the amount of attention that her brother was getting, even though I think at two, most kids are getting a lot of attention.
Stacey: No doubt, it’s interesting. She, um, she was terrific at first. I think she understood that he wasn’t feeling well and then understood that this made him better. So she wanted to help and it was kind of like when we first brought him home from the hospital, she was like, here’s my super helper. And then after a couple of weeks she’s like, this is lame. Like this kid doesn’t do anything right with the baby. You’re like, oh, so with the diabetes it was like, I’m going to help and I’ll do whatever you need. And then after a couple of weeks she was like, is this gonna change? You know, this stinks. And especially at bedtime, as I said, my husband owned a restaurant, so he wasn’t home and bedtime always. I mean, it’s a free for all diabetes or not with little kids and I was, I always felt like something cropped up that needed extra attention with diabetes right at that time. And so I would say to her, read a book, here’s your coloring page. I’ll see you in a minute. And I was always over with him and we tried to really talk to her about it in a very open and honest way, um, that yes, he is getting more attention than you and that stinks. But here’s why. I never really tried to become, to sugarcoat it and kind of make it like, no, no, it’s all mommy can be everywhere, you know? I’ll tell you what I think really helped and she is now, she’ll be 17 soon. Yeah. And she’s, she’s just a fantastic kid. But what we’ve talked about, what we did that I think really helped is that we always had time alone. I would take her and leave. I would take her away for girls weekend. We would go on trips together. We would just go out to dinner together. We’d go, you know, to the movies. I always made time for each kid individually and so did my husband and we kind of talked about that before diabetes. It’s a little easier for me I think because my kids are different genders, so you could be like, well, we’re just going to go see this or do that, and they had different interests, especially as they got older. But I think no matter what the setup of your kids are, if you’re able to do that, it’s fantastic because while she knew at home, things would be crazy sometimes. She also knew that in two weeks I was hers for 24 hours.
Sharon: Yeah. I think that time alone with each kid when you can make it happen is really special for them. And for you.
Stacey: Yeah, I’ve had her. I’ve actually had both kids on the podcast. Um, we did a 10 year anniversary show about what it was like growing up in our crazy house, but also when, what it was like with diabetes and uh, and Leah, my daughter really opened up about how difficult it was. But at the time she always knew why and she appreciated us talking about it that way, like treating her kind of like a grownup when she was five. Um, and that she was really honest about it. It was nice and I don’t think there’s any way to make that really better other than acknowledge, yeah, he needs more attention because of this, but I still love you. You’re fantastic and important and I’ll show you that in another way, as soon as I can. And thank goodness she was a big reader because I couldn’t always say here’s a new book. Would not have worked with my son.
Sharon: Yeah. And then, um, you know, I’m sure that, you know, uh, at two your son probably didn’t really feel that feeling that maybe a five or six or an eight year old might feel where they suddenly feel like they’re different than other kids. But I’m sure that once he started getting into that early school age did he expressed some of those feelings?
Stacey: Yeah. You know, it’s a good question. I think that, at least for us, and I know I’ve talked about this a lot on, on my show, there’s this golden age in, in diabetes and I think it’s, we see it in our kids too, in any kid. From ages like five or six to nine or 10, you know, there’s still rule followers. They still want to please you. They were excited about activities and that’s how it often is with diabetes though that that age they go to kindergarten and you know, not every kid obviously, but definitely mine wants to show off their stuff. This is my insulin pump. My Mom’s going to read a story about going to school with diabetes and you know, this is why I had to take a shot today and you know, I caught Ben, he played baseball for many years. He was about nine or 10 and we saw the kids crowding the dugout. We thought, what’s going on over there? He had taken his insulin pump and shown one of his friends how to give him insulin and was like, here or you can do it. Anyway, the buttons on his phone and it was fine. I had to go talk to the mom or the way after and be like, listen, if your son comes home and says he gave benny insulin. He was very upfront about it, but then middle school really has changed things. He is, he’s still very accepting of his diabetes, but we don’t do, you know, he used to be front and center at jdrf walks, you know, the poster child for the local chapter, that sort of thing. Not, not even remotely interested, you know, just I want to get on with my life. I don’t care. I’ll take, well I shouldn’t say he doesn’t care because he gave me a great line last year.
I said something to him. I was probably frustrated and I probably said something like, you don’t even care about it. And he said, mom, I do care about diabetes, but I don’t worry about it. And I think I know. But I think that’s the difference for me is I’m always worried about both of my kids, you know, and especially worried about diabetes, but he, it’s, it’s part of who he is. So he cares about it, but he doesn’t care to share it all the time like he used to.
Sharon: But that’s such a nice thing to say. And to frame it, you know, a good example of that is of, of the attention. He played football last year and his blood sugar was really high at an away game and I don’t go to every game and I don’t go to every practice, but I was going to this one.
And when I got there he was sitting out and he said it. He knew I was coming and he said, I don’t know what to do. You know, my blood sugar is really high. It’s not going down. Um, I wanted to talk to you about it. And we decided that he was just going to give myself a shot, but he didn’t want to come out of the game and he didn’t want everyone to see him. You know, this is a kid that never cared. And so I convinced him that if he just lifts up his shirt and did a quick shot and nobody is looking, nobody would care and he could just do that. And he did. So that showed me that, right? He knew to take care of himself. He didn’t want the extra attention. Whereas when he was six or seven, he would’ve taken his clothes off on the sidelines. Who Cares? Right. But, um, but he knew he had to take care of business and then, um, that was a really bad high. Sometimes he doesn’t feel bad with high blood sugar, but he felt terrible with that one. So it took a while to get them back in the game. But it was, it was a great moment for him because you know, he, he did what he needed to do, but he also was able to do it without calling a lot of attention to himself.
Sharon: Would you say that having a child with diabetes at, at a young age changed the way that you parented him in terms of, you know, did you let him get away with things that you might not have otherwise? Let them get away with. Did you feel guilty in any way about it?
Stacey: Yeah, that’s a tough one. I, I’ll answer kind of in two parts. Um, I, I can’t obviously I don’t know because we don’t have his childhood back without diabetes, but I’ve got to say yes. It definitely changed things. And on the second thing I’ll get to is it changed how, um, how much supervision and parental involvement was needed.
Sharon: Right. Because you, I mean, you did have an older child that you can sort of compare how.
Stacey: Right. Right. Okay. So I’ll, I’ll make that second part the first part and then we’ll go back to behavior issues at home. Um, but with my daughter, kindergarten started, we sent her to kindergarten by have a great day, sent her a lunch and you go to the open house and you meet the parents. Kindergarten started and I needed to meet with the nurse. And we didn’t even have a full time nurse. Most schools I live in North Carolina, many, many schools do not have a full time nurse. Oh yeah. So the question is who is going to take it was good, I want to say take care of him, but he was five years old when he started kindergarten, turning six and could use his insulin pump. He started on an insulin pump when he was two and a half, could check his blood sugar. He knew that when he ate lunch he needed to give himself a dose, but he couldn’t count the carbohydrates to do so and it could only do those things, but he knew how to do with supervision because you’re not going to let five rolled operate this machinery too much insulin. It’s going to kill him too. Little insulin is going to make them sick. So I had to go to school and say, okay, what’s the schedule for the day? Right? When are we going to dose insulin? When are we going to check blood sugars? Who’s gonna look over his shoulder to check that. Who’s going to do it when the nurse isn’t here? Is he going to do it in the classroom? Is he going to do it in the nurse’s office? What happens when he goes to gym and we had to do that in a way that makes everybody feel comfortable. It makes everybody feel like they’re part of the team because he’s going to this elementary school all the way through hopefully, and I don’t want people thinking that we’re worried about them or upset at them, so it was so much more work. Then on the weekend, hey, everybody’s going to the amusement park. Everybody’s going to play ball. Mom, can I go? No other parents are going starting in like first or second grade, right? Yeah, I was at all those birthday parties. Right? We’re going to the bounce house for a birthday party.
Well that’s great, but that parent does not need to be worried about your insulin pump flying off and smack somebody in the head or your blood sugar going low because you’ve just exercised your little heart out or worrying about how much cake you’re going to eat. So I. I went to a lot of birthday parties where I was the only parent who stayed. I tried really hard to stay in the background. You know, you don’t want a helicopter, your kid, you really don’t, but there are sometimes when you have to, especially, you know, with a chronic condition, you have to weigh the risk and the benefit. So we’re always weighing that, especially as he’s older now. Okay. Is it more important that he learn independence, responsibility, and confidence, or is it more important that you have a perfect blood sugar today and I am always going to come down on the side of learn to do it yourself, Kiddo. Whereas a lot of parents feel that the blood sugar is much more important for their child’s long-term health and that’s something that everyone has to decide for themselves in my opinion.
Sharon: Sure. Yeah. I mean, I think what your, your point. I mean, it’s interesting because I find that in first, second grade you’re not really the only parent.
Meet Your Mentor
Sharon is a general pediatrician, loving wife and mother to 4 daughters.
After a decade of practicing general pediatrics and working with families, she realized there often wasn’t enough time while tending to children’s medical needs to help parents in the way that would be most helpful in shaping their children’s futures.
The Raiseology Program was developed to teach parents how to raise their children with the love and authority necessary to promote resilience and responsibility.
Sharon’s experience with hundreds of families as well as her own help her meet you where you are on your parenting journey to help you make it what you want it to be.
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