Sugar Mama's Podcast: Type 1 Diabetes

#64 The Trauma and Grief of a Type 1 Diagnosis with Brooke Giordano

March 30, 2022 Katie Roseborough Season 1 Episode 64
Sugar Mama's Podcast: Type 1 Diabetes
#64 The Trauma and Grief of a Type 1 Diagnosis with Brooke Giordano
Show Notes Transcript

Today's topic, is not one that is talked about often but one that I and my my guest, Brooke Giordano, think is very important to acknowledge. Trauma and grief are words often associated with horrific events, major accidents or the loss of a loved one. I would argue to say that receiving a type 1 diagnosis is a traumatic event, one that may people grieve in cycles throughout the course of their life. Brooke Giordano is a marriage and family therapist and a fellow type 1 mom whose daughter, Amelia, was diagnosed around the same time and at the same age as my daughter, Sarah. Listen in as Brooke and I discuss the trauma and grief of a type 1 diabetes diagnosis and how it effects the whole family. Enjoy!

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This is episode 64 of the sugar mommas podcast. Today's topic, the trauma and grief of a type one diagnosis. Isn't one that gets talked about a whole lot, but it's one that both I and my guest Brooke Giordano think is very important to acknowledge. Brooke is a marriage and family therapist and a fellow type one. Mom whose daughter. I was diagnosed around the same time and at the same age as my daughter, Sarah, listen in as Brooke and I discuss the effect that a type one diagnosis has on the whole family let's get started.

Katie:

You're listening to the sugar mamas podcast, a show designed for moms and caregivers of type one diabetics here. You'll find a community of like-minded people who are striving daily to keep their kids safe, happy, and healthy in the ever-changing world of type one. I'm your host and fellow T one D mom, Katie Roseboro. Before we get started. I need you to know that nothing you hear on the sugar mamas podcast should be considered medical advice. Please be safe, be smart, and always consult your physician before making changes to the way you manage type one diabetes. Thanks. Everybody I'm here today with Brooke Giordano and Brooke, I'm going to let you introduce yourself and tell the listeners what your connection to type one diabetes is.

Brooke:

Yes, absolutely. I became well-acquainted with type one diabetes swiftly, on July 3rd, 2020. it was a screeching into home base of figuring out, I have a new relationship with type one diabetes. my daughter, Amelia, who was eight at the time, she has spent the last few months, as you can imagine, I guess it was March when the pandemic had kind of hit and started. So we were all at home and, she. was doing the typical drinking all the time, those kinds of things, and started to pick up some hints about what might be going on as time went on. So that's my connection. I can obviously tell the story if we want, but, yeah. I am a mother. I'm a marriage and family therapist. And Northern California with a nonprofit, we provide school-based counseling and in-home family therapy to various under-resourced

Katie:

Yeah. I've never met a marriage and family therapist. So would you mind just telling the listeners, like what a typical day looks like for you in the life of that?

Brooke:

Sure. mine being that I'm part of a nonprofit. I have a bit of a unique, position I've been here almost 17 years, so I have worn a few different hats and have that. Fallen into the right role, which I can speak on. But early on, I really, I started out as a school-based clinician. We have a lot of families that have no insurance or Medi-Cal and are struggling to find access to resources. So for several years I worked in schools where we were able to provide, in school family or child therapy and then family support. at, at no cost to the families. And then that that role sort of turned into several other things. Over the years, I worked with, youth coming out of incarceration of various sorts, returning from group homes and trying to re reacclimate back into the homes. I worked a lot with. Family is trying to adjust, in very different ways, obviously then type one diabetes, but when working really closely, with families for a very long time, and now I currently actually, am the trainer for students who are going to school to become licensed professional clinical clowns counselors, or, marriage and family therapists. Master's in social work. So those students who are coming out and their very first opportunity getting their hours and doing the actual work in person, train them and I am their initial supervisor in the field. So I support them sort of in their first real life experience doing face-to-face therapy.

Katie:

Wow. Interesting job got. so Brooke, you reached out to me about being on the show and, I really want you to tell listeners. You know, why you wanted to come on and why? just, you know, what you wanted to talk about and, and, you felt like it was important because I also think it's a very important, but why don't you explain it to the listeners?

Brooke:

Yeah, I think that, you know, you and I connected, it was interesting. I feel like our girls have a similar timeline. I want to say, I think we found each other when I was sort of desperate to connect my daughter to like other kids her age. And we did that one Facebook group where it was like, please show my daughter that there are other people like her sort of feelings. And that was our initial connection. And. and then your podcast came along and I just saw these, these important topics being talked about. And I think just what I noticed in my. Story. And in my story as her caregiver and my family story is that, and I do know that because I'm a clinic, a therapist, a clinician, and marriage and family therapist that I do have this unique lens, but really just as a mom, I was so blown away at how medical the response was to everything, which to some degree I completely. It's very medical. It's super important. It's a science like you need to get these numbers here and these numbers need to go there. but the impact of a type one diabetes diagnosis is traumatic and just the word trauma, I think is a little bit of a scary word. for people. And I don't know that a lot of people think to attribute it to something like this. I think people think of it as, you know, folks who've been to war or folks who have been through some sort of assault or some sort of, you know, one of those obvious things, but trauma really It was a trauma impact that made me feel like I was grieving. And I feel like I wasn't grieving the loss of my daughter, obviously. Thank goodness. But I was grieving the. loss of the childhood, she was quote unquote, supposed to have, I was grieving the childhood that she was about to start realizing she was supposed to have, you know, birthdays parties are supposed to be fun. You know, vacations are supposed to be easy. Can I have this muffin should be a simple answer, you know, and all of a sudden things got difficult and I just really felt like. When I was going on too, you know, I really gravitated toward like, give me all the information I can have in the beginning when she was first diagnosed, I, I went on all the Facebook websites, which I know makes me sound like I'm in old-school because moms who do Facebook are our old ones, which is fun. I plan it on 44. but the groups I found on Facebook were super helpful at first because I felt like I found a community and that was the one major. Benefit of being in this community is that it's a close, it's a good close community and supportive, but I just felt like every answer to everyone's post was you're going to be fine. You'll find your new normal, you know? and I just didn't feel like there was enough of actually, you know, what, the next six months or the next, this, this, this next chunk of time is going to be the hardest time in your life, you know, like, just validating. Those things. And, and I just felt like I got that experience myself, despite having a good experience with my team, but I also felt like I was seeing it in the community. And I just think it's important to acknowledge the depth of the trauma. That is the grief that comes with a third, the loss of the childhood, sort of the loss of, the ease eating, and all the things that potentially.

Katie:

Yeah. I mean, I can definitely speak to the fact that it was very traumatic for our family and I think it was traumatic on different levels for different members of the family. But I, it definitely impacted everybody. And I mean, when I say everybody, I mean, brothers, me, my, obviously my daughter, my husband, grandparents, I think grandparents are a group of people. You know, we don't talk about nearly enough, but, you know, think about it, think about grandmas and grandpas and all they want to do is, spoil their grandkids and take them to get treats and take them on vacations, where they do fun things and they lose that too. And, and I think that's was traumatic in our family at least. And, You know, friends, everybody, I think everybody's impacted. and you know, it was traumatic and in a lot of ways, and we definitely, you know, the, the initial diagnosis day was clearly like very traumatic, lots and lots and lots of crying and scared. There was a lot of fear involved. And obviously that, that, you know, level of, of impact has settled a lot down. But for me, at least I find that we do have a lot of periods that are they're good. Like we're, we're in a good mental space. We're kind of chugging along like things seem okay. And then I don't know what happens. Like it's hard to really pinpoint, but all of a sudden I feel like. We just get really tired and we're over it, and we don't want to dedicate as much time and mental space to managing diabetes. as we were a day ago or a week ago or a month ago, you know, it's like you kind of cycle in and out of these periods of time of, of. Being okay. And then not being okay. And I guess that's burnout. I mean, we've never gotten to the point of burnout or we're just totally neglecting our diabetes because, and thank goodness. I mean, I know people have gone through that, but, for us I found that it, it kinda comes, comes and goes What do you, what do you think what's been, what has been y'all's experience with just the effect of, you know, the, the initial trauma and then just kind of the ongoing grief associated.

Brooke:

Yeah, I dunno if you've ever seen that again. I think it was maybe a meme or something I saw on some sort of social media, but just the way trauma looks the way grief looks in the beginning. I'm sorry. Not trauma grief is that they're set of this image of like this box and there's, it's a little tiny box and there's these balls that sort of hit every corner all the time. Cause they're just bouncing, bouncing, bouncing, and over time. The pain doesn't get any little. The box, you know, the bow, the ball doesn't stop hitting the walls. The box just starts to get bigger. So the balls hit the wall fewer times. So every time you get hit, sort of with this overwhelm or pain, you know, like where you saying, you're like, you cry a lot in the beginning and you know, sort of like this imagery of like the ball is hitting every corner and you cry in the morning and you cry after lunch and you cry that night before bed. Cause it all. And then after six months, you know, maybe that you get more of a capacity, so that sort of boxer grows and when the ball hits and when you start to cry or when you get overwhelmed, it still hurts just as bad as it did early on. It just doesn't happen as often. And that's sort of what I mean with what happens with us is that we were similar. We, there were a lot of tears in the beginning. There was a lot of overwhelm in the beginning. There was a lot of, I don't know how I'm going to be able to do this and have a full-time job and give to my other children in the way that they need and you know, all of those things and my partner. Right. but then, but then a few months go by and even though. We've gotten better at doing it. I've noticed that maybe it wasn't every night she was crying after a few months, it was just like a couple of times a month. She was crying before bed. And for Amelia, it was mostly because her hardest parts were wearing the gear and the needles and the arms are really hard for her. So like, it's just sort of the reminder at bed when there's no school or no food or no friends to make you forget. It was when you were reminded that you had diabetes. So nighttime for her was always the hardest and. So I would just tend to scale it based on like how many tearful nights we had in the beginning. It was almost every night there was tears. And after a few months, it was just a couple of times a month. There were tears. And now we're at like a couple of times, every few months there's tears. And I feel like the pain of it when it comes up, when she cries, when she gets upset and even as a caregiver, when I get upset and overwhelmed, The pain a bit, doesn't feel different. Like it feels still feels just as strong. It just doesn't happen as often. that's very real grief, right? Like when we lose someone we love and care about years can go by. And while we haven't cried in a while, when we do, when we feel it it's, it can nearly knock us over. So I think that's the thing is that there's just, I want to. Demystify the fact that like trauma and grief have to be related to the loss of a person. Like I just really feel like it's important to acknowledge that these words are okay to use with chronic illness,

Katie:

Yeah.

Brooke:

know? I think that's super important and, you know, yeah. I definitely feel like I'm in a place now where it's been, you know, almost a year and a half. Where I never thought I could be a year and a half ago, but I also know that I'm more hypervigilant than I've ever been. Like I don't ever totally feel like I fully relaxed. Cause I've got to always sort of be ready for any possible thing that comes up too. So you just, you change, you know?

Katie:

Yeah. I was, I was actually, well a while ago. I think it was sometime last year. I there's a podcast called wire talk that I really love is just like a parenting podcast and they had a lady on. Judy Wolf. I think it was her name. And she was like a grief specialist basically. And, and it was just talking about like grief in parenthood and Yeah. she said the exact same thing you just mentioned. And I actually, I remember that podcast, like last week when I knew I was going to be talking with you and I'm like, let me go listen to that again, just to kind of get get repaired and. She, she was like, yeah, same exact thing. Like a lot of people, when you say grief, you, I think most people kind of immediately connect that word to like losing somebody like the death of someone. but she's like really, and truly grief can be the loss of anything. Like it can be. I have a friendship, like maybe you had a really good friend and for whatever reason, you've grown apart and the friendship is broken up, it can be, the loss of like, you, you lose your job and you, maybe you're not in the same financial position that you were, a year ago or whatever. And you're grieving the loss of, of that. And then the last thing she said, and I think she called it. Inter psychic grief, which is what you mentioned earlier, which is the loss of the life that you thought you were going to have. And that really hit home with me with type one because yeah, I think we, as parents, we just get complacent with having these healthy kids that we think, you know, it's going to be like that forever. all of a sudden you're hit with this diagnosis and It's not going to, it's not going to be like this. In fact, we're going to be dealing with this for the rest of her life and our life. And, and yeah, I, I, for sure grieved that I grieved that then. And I still grieve that now there's definitely days where, you know, we just had Sarah's birthday party yesterday and, it was great. We had a fabulous time. 10 of her closest little friends got together for this crafting party, but you know, there's still, you know, you're passing out the cake and you're like, 30 carbs for that cupcake, you know?

Brooke:

Yup. Your brain works real different. Yeah,

Katie:

Exactly. And, And you know, it was a very happy day. I don't mean to say that it was like a totally down a total downer, but, you know, there's just those split-second moments where you just have this tiny wave of grief of like, oh, I wish it didn't have to be like this. You know what I mean?

Brooke:

not only grief of your own, but like acknowledging there's, you know, like the fact that they are losing the innocence of just having that piece of cake, right? Like even they are thinking 30 cards. Right. So I just, all of ours, all of our grief care, care, caregiver, grief, but also just there's and what they have to sort of endure and figure out. And if they don't, they don't call it grief. They don't get it. But those are the things that contribute to those moments where you just lose it. Right. Like, because even when you're not worried about it, you're worried, but you know, so sorry to interrupt. I didn't mean to.

Katie:

no, no, not at all. No. I think that's an important point. Let's maybe talk about, you know, how grief can manifest, and you can probably talk about this from a lens of not only at a type one mom and how it manifests in you and Amelia. And, and then also, maybe you could talk about a little bit at, as like from the lens of a therapist, a marriage and family therapist, just how, some of the different ways that you've seen grief manifest in, in kids. or just people in general, because, you know, again, I think. It's probably mostly associated with sadness, but that's not the only way that it can kind of rear its ugly head with, with people. I know that's kind of, I would say that's probably for Sarah, how it's manifested the most. And for me it's like, we haven't really been angry. I wouldn't describe it. Our emotions is angry. I'm of course, of course I can never truly say what's going on in her, in her mind, but for us it's more just sadness and just, we just get tired. You know what I mean? Like we're so fatigued and it's like, we just don't want to do anything.

Brooke:

Yeah. You know what, honestly, I would say for a million, it has triggered a sense of anxiety in her. she's much more worried about things going wrong. since you've sort of like, sort of pre worries, she like worries ahead of time for things that she would have never worried about before. for example, I'm going into surgery tomorrow. She's very worried about that. Obviously that's kind of a big thing, but like, I would also say, like, we went on an air, you know, we went on our first flight and she was really worried, like worried in a way that before her diagnosis, she wasn't as triggered. You know, by such things. I think for me I'm more vigilant. I'm more on guard. I'm more, I do think I'm more tired. I do think I head home earlier from events. I, you know, just the mental thing, the mental piece of it. I think, I mean, obviously I think typically grief impacts people in all different ways. I think some people can really act out. I think, I guess I'm trying to think about the ways in which couples or families, caregivers navigate the grief of the type one diabetes diagnosis, because there are so many interpretations. So, you know, like you said, I feel like there's such an array of directions. It can go, some people can kind of be in denial. and those are the people who I think are going to say, like, you're going to be fine. Everything's going to be fine. You just have to find a new normal. And, and I also don't want to diminish those responses. I don't want to minimize the importance of those responses because I also think those are protective. You know, I feel like people reach for those responses because it helps them. Just hold it because it's such information to hold. So I don't want to diminish that, but I do think that that could be, you know, right after a diagnosis to say like, it's going to be okay, you're going to be fine. I don't know, I can't help, but feel like there's a little bit in denial in that, because it's not necessarily fine. This is really, really hard. And this is going to be a steep learning curve and you know, all of those things. So again, I don't want to deny that, but I do feel like, you know, denial can be a piece of the grief. Obviously the anger, like, you know, some parents are like, no, this is not happening. My kid is fine. And that can often be the parent or the caregiver who is a little bit more distant or the parent who sort of takes the backstep. Like, I just. I can't see, my kid is not perfectly healthy, so I'm just going to act as if they're fine. And I know that that can come up,

Katie:

I know a lot of kids act out. I mean, you already, I think you already said that, but, you know, I've seen it a lot in those, in the Facebook groups too, of like, you know, how they're, they've just seen such a change in behavior and in a bad way, you know, how kids can, just become and disobedient and violent where maybe they weren't before. And I think that's another way that grief can manifest for sure.

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Brooke:

Yeah, well, there's so many things that I think have to do with that too. First of all, like when are you diagnosed? Right. If you're diagnosed at 14 and all those things are going on for you at that developmental level, I can see how. It can really trip you up and you really want to go find independence and autonomy at that point. And you know, like I can see how you'd want to kind of, you know, Flip, you know, turn your other, what does it turn there, your cheek or whatever. But, whereas, you know, there are some ways in which diet, the age of diagnosis impacts how you're going to respond. I also think it matters how parents respond. I do think, um, I'm noticing in my learning that there's a couple of different schools of thought around how you deal with diabetes. Some people are really nutrition focused and we are not as taquito family. And we focus on. Macros and all this stuff, others are more, maybe a little bit, and I don't think it's this generalized per se, but kind of more like mental health focus, like, cause for personally, for me, I don't want diabetes. To be a reason for me to say no to something. I want to still be able to say yes to her. there's just going to be times I say, I know because you're nine and it's nine o'clock and you just can't have ice cream. But like, but I do want her to know that like, when she wants to have it, when the like ice cream guy drives by, like, I don't want to be like, oh no, because I don't want to deal with the diabetes of it. You know, I want to say yes, because all the other kids in the neighborhood are doing it and I want you to be able do it too, it's so it depends too on. So it depends on your diagnosis age developmentally. I think it depends on the parent and their attitude toward it. And, and again, it has to do with their ability to hold it. Some parents really need to focus on the protein and the carbs and all of those things are what makes them feel in control of a very chaotic external. You know, so there's just so many ways to make sense of it that can impact the kid, which is why I feel like, know, my experience with the grief and the trauma of it is as a caregiver, not as the person with the illness, you know, it'd be a whole different You talking to Amelia, obviously, right? Like I'm, it's my caregiver experience.

Katie:

Yeah. You know, this is just a random thought about just, like you mentioned the people that are like, everything's going to be fine, don't worry about it. You're going to, you know, it's going to be fine in the end. I've had, I've had a few, families that I have been connected with just in my city who, you know, the kit, like for the Mo this is not, this is just like a couple that I'm thinking of. And just online that I've seen, like, it almost seems like. Like nothing happened, you know what I mean? Or at least coming from the parents for sector, they're like, oh man, like they're handling it. So amazingly well, they're a rockstar and I just can't believe it. And, first of all, I think that's great. Like,

Brooke:

Yes.

Katie:

I mean, it's amazing, but I think especially just having like finished recording all the episodes for my teen series, kind of one thing I learned is that. It grief is going to show up at some point in time. Like if it did not show up in the beginning and I hate to say that as like a Debbie downer. Cause I, I am one of those like chronically positive people, which I know can be super annoying, but that is one thing that I took away from that. Like, just because. Things are going Well, now, like it is, it's ridiculous to think that there's, they're going to go through their whole entire life without having a struggle with their diabetes. So, you know, I think knowing the signs of grief, how grief can manifest, you know, how as a caregiver, you can help walk them through their grief. Try to fix their grief. We can talk about that too. About how, you know, I think as moms, we, all we want to do is fix the problem. But I think when you're dealing with grief, just can't, you know what I mean? I think it's, it's important for parents to know that, to know that. And I mean, think about your own life. I mean, you know, it makes sense when you think about your own life, like, of course your childhood seems, you know, magical and, and. You know, even the hard times didn't seem that hard when you're a kid, at least for me. but then you grow up and you realize life's art and people get sick and things happen and sad things happen to good people and, and all this stuff. So I think that. I think just being, families need to be not live in fear or live in, in worry and anxiety, but just, just be aware that there's probably going to be some times where your kid is not, having as easy of a time with their diabetes as maybe they were in the beginning or as they were sometime in the past.

Brooke:

I agree. I think one of the, maybe forgotten parts of grief is that it comes in with. You know, like, we all think that like, oh, say so, Sue, as soon as somebody passes, you're going to feel, you know, depression, anger, acceptance, you know, or you're going to go through all these phases and then you're going to get to the other side, you know, that's not how grief works. You know, sometimes you are in denial for six months and then all of a sudden you're really, really angry for a while. And then you, know, there's just so many versions. So yeah, that's the piece that I think people. Forget is that, is it, it comes in waves, but again, I want to just say to that, I think the people who are really living in a, we got this, we're fine. They're doing so great. Like again, I think that's serving them. I think that's a protective factor in, in a trauma response. I

Katie:

Yeah.

Brooke:

their way. It's like a survival skill in the midst of something chaotic and traumatic. are taking on the onus of, I am fine. We got this. And you know what, if that's serving you then more power to you. but yeah, but I think, if there's any way to also know that there's these other parts that are going to come to. or at least know that they're possible to come to it's. Cause it's, it's just not that easy. It's just not that simple. And there's because there's no equation that you, you know, somebody told me it's like, once you learn the, the rules that game. Once you learn the game, the rules change is how I was told to deal with diabetes. And that was very much, you know, it's not something you can either like figure out. So it's going to come down at some point. So if you can at least be prepared to know that some of those hard feelings are on their way. the more you can get prepared, the better.

Katie:

You know, it's funny that you say that because like one of my coping mechanisms, really my whole life is, has been humor. Like, you know, I am the person that's laughing. Things that I probably shouldn't be laughing at like, you know, inappropriate situations and, and you know, if you've been on my Instagram for even a minute, you'll see, you know, you see these ridiculous reels where, you know, I'm trying to make light of the whole life with diabetes, because that is my way of coping with this pretty heavy situation. So, you know, it, it's a coping mechanism for sure.

Brooke:

Absolutely. And there's some acceptance in that, right? Like if I can make fun of it, you know, there is a level of acceptance in that, which is also another part of grief, you know? So, um,

Katie:

You know, the podcast I was listening to that lady said that those stages of grief, which I could, I probably couldn't even, let's see. is it like? denial, sadness, denial, anger. And then the last one is acceptance. I think I missed one, but, she said that is actually that create, that system was created by. Somebody, but it was specifically for people who were, were dying. So people who were faced with like a terminal illness to terms with the fact that they have this and it's eventually going to end in death. she said that was not designed. Those stages were never designed for people who are. Living through something like a chronic illness, because like you said, it doesn't, there's not an end. It doesn't come to an end. You it's a constant, there's a lot of, there's a lot more hard work to be done

Brooke:

Yes.

Katie:

you're living with 24 7. So,

Brooke:

Yeah.,

Katie:

I thought that was very interesting. I had never heard that before.

Brooke:

Yeah. Well, and, and the one that bargaining is the one that, we left out of that, and bargaining also makes sense during the process. Right. Like, gosh, if I just make sure that they eat really healthy, you know, if I just make sure, you know, so there's just, yeah. There's so many incarnations of the way it can be interpreted. And, yeah. So yeah, no, it's not. Quite knowledgeable and that's, I'm glad she was able to put, sort of the, the, the notion that it needs to be related to the loss of a person. really when really, you know, I even actually, you know, I went to go to my own counseling as a therapist to talk to someone who has supposedly. Specializing in chronic illness. And this is what I think I might've come back to you and said, oh my gosh, we got to meet because I literally requested somebody who was specializing in chronic illness. And I told them about Amelia early on. And I just said, you know, like I am a caregiver in my work. I'm a caregiver in my personal life. I'm a mom, I'm a mama bear in the style. I live in this world, you know, like it's just who I am. And now I have this daughter with this chronic illness and I really need some support. Do you know what he said? He said, oh, my cat has diabetes.

Katie:

No, he did not.

Brooke:

He said that I know. And I'm not even joking. Like he said, so basically it's just like a few, like a couple more shots during the day. Like I totally get it. And I, and I, I looked around like, am I on like candid camera? Like, is this a joke? I mean, it was true. I mean, it was laughable because that's what I had to do. And it was kind of funny, but it was also just so sad, right. That like that, that was how I was being received by someone who supposedly specializes in chronic illness. So it was just one of those things for me that felt like, wow, we really need to talk about the impact of this. It is not the same as cats died. You know what I mean? Like obviously the things I don't even need to say, but I'm just saying, like, it was just such an impactful moment. for me, in realizing the importance of really talking about it, because I also don't, again like Debbie downer, like not my intention. yes, I am in a whole new place in, in, in supporting my daughter and don't get me wrong. It's sucks. And it is hard and I would really rather not do it. And of course I would do it for her a heartbeat, but. Gosh, am I really, truly in a different place than I was a year and a half ago, 100%. And I almost didn't believe all the people who said that I would be, but I am, you know, I can take a phone call and count carbs and make dinner. Like it never thought I'd be able to do that. You know, like got really good at math was never a math person, but, but boy did it make me realize the importance of. just acknowledging the impact because if we don't, we under, you know, we don't allow ourselves to feel what we should be allowed to feel,

Katie:

Yeah. Yeah. I totally agree.

Brooke:

to get to acceptance. Yeah.

Katie:

And now I've got to ask, did you continue going to this person?

Brooke:

Oh my goodness. No, not only did I say, I think we're done here.

Katie:

Oh, right. But in there you just came out with it.

Brooke:

I just said, you know what I said, I think that we're not going to be the right match. I'm really looking for someone who, know, can meet me where I'm at with regard to. Chronic illness of a disease of a human,

Katie:

Yeah. Yeah.

Brooke:

and I did call to find out because that was another piece is where I was saying like when the medical, you know, cause I was impressed when Amelia first got diagnosed, we were told like, here's your team of people. And one of those people was like this, um, MSW or somebody who was like related to. Mental health or getting your resources and things like that. And so when I reached out to them and said, I want to go to therapy and I want to talk to so many who is, you know, a chronic illness, um, specialty, and they didn't know, they didn't even know. So it's like, it was almost like Kaiser's trying, you know, like the medical field is trying, they're saying like, here's this person on your team. But like, when I went and said, I need to talk to this particular person, um, or, or OB, which feels obvious to me, like it's a chronic illness issue, right. I speak to somebody who works in chronic illness and there was just very little understanding of it. and so when I was placed with this person who clearly didn't sort of meet me where I was hoping to be met, I just called back and I just kind of said, you know, I get the feedback. I basically just said like, you know, clinician to clinician, like this was hard to be a part of. And I just don't want other people coming to have to experience that to sort of be. compared to young minimized in that way was just brutal. And once again, it makes you want to say like, oh, I'm fine. Nevermind. Right. Like, Ugh, I'll just deal with it on my own.

Katie:

I think I've become a more empathetic person this whole process. Just, recognizing when other people might be grieving and

Brooke:

Hmm.

Katie:

meeting them where they are and their grief, because, you know, I think all of us have a tendency to quantify grief. Like, well, my is greater than your grief or their grief is, must be greater than mine because they're dealing with, you know, we ha we, we currently have some, situations in our life with, with friends and family that are very, very heavy. And so, you know, Yeah, have to stop myself from looking through the lens of like, well, whose grief is greater, you know what I mean? Like it's like, everybody's grief is to them is like the worst possible thing. So I need to approach it. you know, just when I'm trying to encourage them or just not, not even encourage them, just like be there for them and listening to them, just kind of keeping in mind that like, to them, this is like, this is. Really, really, really, really awful. And, and lot of times it really, really is. I don't know. Does that make sense? That was,

Brooke:

Absolutely.

Katie:

What are some things that you have found to be helpful? Just kind of helping your. Helping your own self, like through a time that might be more challenging than others. And then helping Amelia through some of her, some of her grief, I feel like something I've also learned from this whole experience is that you don't try to fix someone's grief, even though we really want to, you're really just being there to listen. And I'm so sorry, like, you know, what can I do to, to, support you or whatever it may be? What are some things that you have found to be.

Brooke:

Yeah, I think the single hardest thing is a parent or caregiver when your kid is hurting is not being able to fix it. And that has been the one, the one thing that you just have to sit and learn to sit in, and I think early on when. She, you know, the pricks and the pokes and. Gear and all the things that she still doesn't love a lot. because she's, so she's a slim kid, so there's not a lot of real estate on her body. so that kind of sore, but, I remember in the beginning it was like, it's okay. It's okay. And I remember. No, it's not okay. Stop saying it's okay. Like, so instead I just, I would join with her. And instead of when she would say, this hurts so much and I'm like, oh my God, I'm sorry. It hurts so much. Like I would, I would mirror her emotion almost, and then she'd be like, oh, and I'd so I'd say like, oh, you know, and that like, hold it too. So at least, you know, I, I don't remember where I read it, but yeah. We can't fix it or make it better. But if they know they're not alone in it, then they're not going to come out of it traumatized, right? Like something can be traumatizing and the kid doesn't have to grow up being a traumatized child. Right. Like if, if somebody's joining in with their the moments of trauma in their life, and they feel like they are. Connected to, and in it with someone, then you can move through it together. Now it's on me to figure out how to deal with how hard that feels. Right. But, but knowing that I can at least join with her and how much it sucked or how much it hurt, rather than saying it's going to be okay because not only is that annoying and minimizing to her, but I know that's not true, but. It's nine o'clock at night. You don't want to be getting poked. You know what I mean? It's not going to be okay. You know, this does suck you're right there. Like just saying that has helped a ton.

Katie:

I do the same things. I try not to, you know, I try to avoid the it's going to be fine. It's going to be fine. You know,

Brooke:

Yeah. You're okay. You're okay. You know? Yeah. Like, Ugh, God, I'm so bummed too, you know, and to be totally honest, to be super transparent, I actually like she's allowed to cuss when it comes to diabetes, sometimes. Warren, it just doesn't cut it. And so she usually say it, but she'll write it. She'll be like F diabetes and then she'll show me the whiteboard. And I'm like, yeah. we have our ways of, you know,

Katie:

Yeah. I like that. I you're right. And there's sometimes there's just no better words for the diabetes situation, right.

Brooke:

they they've, there's a, there's a, you know, there's a piece of their childhood. They've lost already. At least let them have a couple of good cuss words. Cause man F the F-word feels way better than darn every once in a while. And y'all got to believe me on that.

Katie:

I have no doubt. You are not alone in that. situation. That's hilarious. Well, is there anything else that you want to add? Anything else you want to talk about?

Brooke:

Yeah, no, I think so. I think the only thing you had brought up that I thought was a good topic was just, you know, and I see it too, was the ways in which couples work differently or the ways in

Katie:

Yeah.

Brooke:

you know, parenting teams work differently. And so I was actually talking to my partner about this morning or last night, it all runs together. But, you know, I think I see a lot of. About, you know, one person taking the brunt of it or one person sort of holding it all and sort of how to navigate that. And I'm not to say that I have those answers, but I do definitely feel that, you know, nine times out of 10 relationships already have issues before type one diabetes come into the picture. So type one, diabetes is only adding to whatever. Stresses were already there prior to, but I think one of the things that my husband and I discussed or, um, you know, letting. The one partner do what they do best. You know, like if my son, my 15 year old had diabetes, my Karen concern and snuggling with him would be all he needed. But for Amelia, what she needs is my husband's sense of humor. she needs him to come, just make her belly laugh, you know? And I come in with the. You know, rubber cheeks or whatever, and sometimes that's okay, but sometimes she just needs what dad does best. And I think that if we can lift that up and our partners, like, you know, what I think she needs to do, that can be super helpful. I also think that parents can be on different pages when it comes to other things, but. Parents or caregiving teams can come together on the fact that like, when it comes to this issue, we have to be on the same team or else not going to be okay. And I mean, it's not going to be okay, like death, you know, and not be like scary, but like this is life or death sometimes. And when you have two different homes, maybe like a parent at one home and a parent, another home, if you're not on the same team being. Big devastating things happen. So I really feel like if there's any way that parents who are co-partner, you know, parenting teams that are really struggling in life to sort of co-parent, I would say that if you could at least try to find a way to on the same team on the one issue, go to battle on the other stuff. But when it comes to this, we gotta

Katie:

Yeah.

Brooke:

same team. and I think those are some things that, stood up.

Katie:

Yeah. What are your thoughts on, in my personal opinion, I think that works best when one member of, you know, the, the parenting couple or the parenting team is the one making, managing the most of the diabetes. That seems unfair to say probably to a lot of people, but I think it's, I think it can turn into a, there's too many cooks in the kitchen type of situation. but, and that doesn't mean that the other person is. Doing anything. I mean, obviously, you need to go out of town, you need a break, you need a night out with friends, whatever it may be, and you need that other person to take over. But at least in our house, I can really just speak for our home. It works best for us when, really there's just one parent making most of the diabetes decisions, the other person's there for support and help when you need it. And you know, all those things, but. think that for us, where, for some people that might cause more arguments for us, I think that causes less arguments because I think if we were constantly discussing what we thought would be best and how to treat it in this situation, we'd probably get into a lot more, you know, heated discussions over it. But in that, in that role, just kind of naturally. To me, because I was, you know, I was the one that was home at the time. and, and, you know, ever since we've had kids, I've only ever worked part time. And, I'm the one that does all the meal planning, the grocery, shopping, the cooking. So, you know, and this is such a disease that revolves around food so much. So I feel like it just kind of naturally fell on me and I'm fine with that. I think for us it works best that. To kind of have one person who's in charge and then the other person is there to help when, when they need it.

Brooke:

Totally. I think if you're living in a, you know, yeah. Certainly if you're a two person home or one, person's happy to sort of take on that other role. I imagine like, obviously there's going to be differences. Both people really have a desire to sort of be the one calling the shots. You know, there's a different vibe to that. Or if you're living in different homes, there's a different energy to that. But

Katie:

yeah,

Brooke:

I mean, that's the thing is everybody's going to find their own rhythm. Every family, every unit, no matter what makeup they're made of, it's going to figure out their own, their own rhythm. uh, but I do really, truly feel like, The impact on everybody is different. And I do agree that there is typically tends to be one person who knows, but boy, do I also really need to know that, like, if I leave that you've got it

Katie:

Yes.

Brooke:

got it or that my backup has gotten it because otherwise it's really not worth me being on my own break or me being out for dinner or whatever it is that I'm doing because you know, you're worried about, so yeah. I mean, figuring out your partnership. Finding your village is key. I think that's a whole nother topic is, like you said earlier with, with grandparents is just this idea that, you know, our grandparents are want desperately to understand how to support Emilia so we can go away for a night, but they're also not comfortable. And I don't know that honestly I'm comfortable. Right? Like there's just, there's certain things like, you know, like I can do. But, uh, I wouldn't do overnight. So there's just so many things to be thinking about, but yeah, having a partner in that and knowing sort of what your strengths are and theirs, is key. He

Katie:

And I think that just comes down to good communication. You really have to sit down and talk about it

Brooke:

no

Katie:

and agree on something, whatever that something is. Yeah.

Brooke:

And, and yeah, and if it's just on that kid and just that issue, then let it be that issue. But, it's just too, too imperative to not have a, teamwork on that, for sure.

Katie:

absolutely. Yeah. And I have to, you know, I have to make it very, I mean, me personally, I have to make it pretty clear. Like I'm going out to dinner. I really don't want to have to think about diabetes. At dinner, you know, can I please, you got it, you know. Yeah, yeah. I've got it. And I went out of town for a couple nights, actually with a friends back in November a couple months ago. And that was a big deal because first of all, I don't, I can't even think about there's only one other night, one other night in like the last. 10 years that I think I've been gone in a way from my kids and my husband, like, you know, so for me to go out of town, you know, with diabetes in the picture for a couple nights, it was like, yeah, it was like, but I, but again, I said, you know, I really don't want to, I, this is my vacation. And I hate to even say that because it's like, I feel, I feel guilty cause I'm like, well, my daughter doesn't get a vacation from it, but You know, I just had to make it very clear and it wasn't in like a, I wasn't saying it in a, in a resentful way or a snippy way, but I'm like, I just need to know that, I can kind of turn my phone off. Right. Like I can turn the Dexcom off and you'll go, you got it. Right. And he's like, yeah, I got it. I got it. Yeah.

Brooke:

let's be honest. When my daughter goes off to school, I'm like, okay. and yes, there's that thought like it makes me respect her that much more and makes her realize what an awesome kid she's even more, but yeah. Getting those moments of breaks matter and that's okay to say too, you know, it feels good to say, oh, I don't have to hear a beat today.

Katie:

it's funny. We were in church this morning and it's somebody, I don't know who, because there's only one other person with type one that I know. about our church. And, but, and it wasn't them because they weren't there, but somebody had a Dexcom alarm alarm go off and I was like, looking around like, who else is beeping? I didn't know. we had any, Yeah.

Brooke:

Where's my other long lost family. My family, my new friend.

Katie:

Right. Exactly.

Brooke:

much any beeping now, like a car alarm, anything I'm like, does anybody low? Who needs a snack? No.

Katie:

Yeah. Yup. Yup. Or any graph at all? Or like a stock market? I all, I see a CGM data, know,

Brooke:

there with you.

Katie:

yeah. Tide charts looking at the ocean CGM data.

Brooke:

yes, yes. Right there with you.

Katie:

Well, why don't we, I know that, you. know, cause you're right. We have, I, we have been connected since the beginning, Amelia got diagnosed just a month before Sarah, same year, they were the same age. So, you stood out to me right away. and so I've seen her walk through the journey and I've seen her go through a lot of hard times and some, I know you've had some really proud moments. So why don't we end on that? What are some of your proudest moments as a type one mom?

Brooke:

Oh boy. you know, honestly, I could go, I mean, right. We could go on and on. I'm just, I'm, I'm, she's my inspiration. I mean, she, even when she gets up after sometimes she'll run high at night and she gets up and she's tired, but she wants to go to school or just, you know, like you can have some downtime and she still wants to go and, you know, but she also. Understands when, well, from time to time, when it's time to slow down and while it might be emotional and hard, she, she makes the tough decisions. And I feel like, I feel like I'm just proud of her determination. I'm proud of her fight. I'm proud of her. I'm proud of how she's willing to work to still just be a happy kid. she just wants to be happy and that's the beauty of being nine is that she's she just wants to be happy. And so if that's not an inspiration, I'm not really sure what it is. And despite all the. Pokes and prodding, and grown up issues, you know, half the time she's like, mom, I just want to belly laugh. I just want to laugh really hard today, you know, and those are her main goals. And I think if she can keep that outlook on life, then something's working.

Katie:

Yeah. I love that. I want a belly laugh today, too.

Brooke:

Yeah. Right. I know. Like I gotta get that on my books too.

Katie:

I know, I know. All right. Well, Brooke, thank you so much for coming on. I'm so glad we finally got to record together and, it's nice to chat with you. I always want to say in person, because it's not really in person where we're on a computer, but you know what I mean? like somewhere other than over social media. So it. was nice to chat with you.

Brooke:

Same. Thank you for having me.

Katie:

You're very welcome. Take care.

Brooke:

Hi.

Katie:

Bye.

All right. That's it for our show too. I want to say another. Thank you to Brooke for taking the time to reach out and suggest this very important episode topic to learn more about Brooke, take a look at the links in our show notes. Okay. It's that time to sign off again? I hope you have a fabulous week and until next time stay calm and bolus on.