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- [00:00]
A
Friends, we're all back together for the next episode of the Juice Box Podcast. Welcome.
- [00:15]
B
My name is Jessica and I have a four year old daughter named Kay who has type 1 diabetes.
- [00:22]
A
If this is your first time listening to the Juice Box Podcast and you'd like to hear more, download Apple Podcasts or Spotify, really any audio app at all, look for the Juice Box Podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management? Go to juiceboxpodcast.com up in the menu and look for Bold Beginnings, the Diabetes Pro Tip Series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. If you're looking for community around type 1 diabetes, check out the Juice Box Podcast. Private Facebook Group juice box podcast type 1 diabetes but everybody is welcome. Type 1 type 2 gestational loved ones it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort or community, check out Juice Box podcast type 1 diabetes on Facebook. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your healthcare plan. This episode is sponsored by the Tandem MOBI system, which is powered by Tandem's newest algorithm, Control IQ Technology. Tandem MOBI has a predictive algorithm that helps prevent highs and lows and is now available for ages 2 and up. Learn more and get started today at tandomdiabetes.com Juicebox the episode you're listening to is sponsored by USMED usmed.com Juicebox or call 888-721-1514. You can get your diabetes testing supplies the same way we do from usmed. The show you're about to listen to is sponsored by the Eversense365. The Eversense365 has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get at eversensecgm.com Juicebox My name is.
- [02:24]
B
Jessica and I have a four year old daughter named K who has type 1 diabetes.
- [02:30]
A
Kay and Jessica. Okay, Jessica. You have any other kids?
- [02:34]
B
No, she's my only one.
- [02:35]
A
Okay. Are you planning on having more?
- [02:38]
B
Maybe. Depends on what the future holds. I wouldn't mind another kid, but I'm also content with having just Kay.
- [02:44]
A
Were you planning on this one?
- [02:45]
B
Yes, I was. I've always wanted to be a mom, so I was definitely planning on this one.
- [02:50]
A
Awesome. Awesome. Very cool. So she's four Now. How old was she when she was diagnosed?
- [02:54]
B
She was three. So actually just June of last year.
- [02:58]
A
July, August, September. October. Wow. 16 months.
- [03:01]
B
Yeah. Yep.
- [03:03]
A
Gosh. Other autoimmune in your life, anything else in your family line, her father or anything like that?
- [03:10]
B
We have type 1 diabetes in the family. K's dad's mom is a type 1 diabetic. And on my dad's side I have two uncles and two cousins with type 1 diabetes.
- [03:23]
A
K's dad's mom?
- [03:26]
B
Yes.
- [03:27]
A
Meaning that her.
- [03:29]
B
Her grandma. Yeah.
- [03:30]
A
So what you're telling me is that one day I'll be dead, right? But like there could be some. Somebody could be like, oh, my mom's father had. Oh, no, it'll even go further than that. It'll be, it'll be like, oh, my mom's mom had type one and they'll be talking about Arden one day.
- [03:51]
B
Right.
- [03:52]
A
And that's like one, two, that's like two more baby makings away to get to that situation.
- [03:57]
B
Exactly.
- [03:57]
A
Interesting. Okay. Wow. That'll be a long time for me. I will definitely be. You know what, I might make it forever though, Jessica.
- [04:03]
B
Don't you think you might.
- [04:04]
A
You never know if the universe is going to pass it on to somebody. I say, why not me, right? Where would you be with living forever, Jessica? Are you a yay or nay on that? Right out of the box.
- [04:14]
B
I probably say, I don't know. That's a hard one. I always think about that. Like vampires, you know, things like that, like eternal life. I don't know, I feel like I might get bored. But maybe not. It does sound kind of exciting.
- [04:26]
A
I'm in for the risk. Sounds better than the alternative, right?
- [04:29]
B
Yes.
- [04:29]
A
So I'd rather be bored, I guess, than nothing.
- [04:32]
B
True. Yeah.
- [04:33]
A
No, yeah, I agree. Yeah, I could get a lot of places. I could maybe finally get good at that Madden game. I'm terrible at it.
- [04:40]
B
Right.
- [04:41]
A
I haven't played it, haven't played it in a long time. But I. If I had a couple dozen years to figure it out, I think I could really dig into it. How do you see Kay's diagnosis coming? Is it all at once? Is it a slow burn? What gets you there?
- [04:54]
B
Honestly, it was all at once. She wasn't, she isn't potty trained yet. She also has down syndrome, so we are still working on potty training. And with that I had noticed that she started wetting through her pull ups within like 30 minutes. Just soaking up to like her knees, like her kneecaps and like mid stomach just Soaked, which isn't like her usually. You know, she's pretty good about telling me when she has to go. So that kind of threw me off. And she was very irritable, just not herself. Just seemed kind of off. Not like too lethargic, but just different than how she normally acts.
- [05:32]
A
Okay.
- [05:33]
B
And she had recently had an ear infection, so she had been on antibiotics for that. I had also started to notice a rash in her diaper area, but knew it was different than a typical diaper rash. I had called her pediatrician and told them and they're like, okay, well, let's just bring her in, make sure the ear infection's gone, kind of take it from there. So I bring her in and they check, her ear infection's gone, but she has a yeast infection, which they said can happen when she's on antibiotics. And so they're like, you know, that's fine. They kind of were ready to just kind of move along and they were going to give us some cream. But I told them that she was also wetting her pull ups and just like soaking the bed overnight and just even within like 30 minutes. I did tell them that there is type one in my family. And I asked them if they had any sort of test in office where we could just see, you know, I was like, I don't know for sure, of course, but do you have something? And they said yes. So they took a urine sample and they were like, yeah, you got to go to the hospital right now.
- [06:32]
A
Wow. Geez.
- [06:33]
B
Yeah.
- [06:34]
A
How soon do you know in a pregnancy about the down syndrome? Is it like during, like while you're pregnant? Is it at the birth? Like, how does that work?
- [06:43]
B
Yeah. So I actually found out when I was pregnant with her. I went to the anatomy scan. I believe I was about maybe 18, 19 weeks along. And during the anatomy scan, they check, like the long bones and, you know, all the whole anatomy. So as they were kind of scanning, the ultrasound tech was just doing her job, scanning over things. And she got to K's neck and kind of just kept scanning over that, Remeasuring and just scanning again, Remeasuring. And she told me, okay, hold on. Like, let me get the doctor in here. He comes in, does the same thing. I'm like laying there, you know, it's been a few minutes. They're looking and looking and looking. And he looks at me and he says, you know that we believe that your baby has down syndrome. And what happens with that is the skin of the neck is sometimes thicker. And that's One of the signs that they look for, really, as well as, like, your long bones being a bit shorter. So with those two things, he believes that my unborn child has down syndrome.
- [07:49]
A
Were you by yourself during that test?
- [07:51]
B
Yes. Yeah, it was during COVID So I was by myself.
- [07:54]
A
Oh, gosh. And then. Are there. I mean, I have so many questions, I guess. How do you feel psychologically in that moment?
- [08:05]
B
I was scared. I was definitely scared. Just because there's a lot of unknowns. You know, it wasn't necessarily the fact that my child may have down syndrome. It was just, you know, I'm sure there was other health complications that could come along with that. And I've always wanted to be a mom, so I just wanted my child to be healthy and, you know, just safe.
- [08:28]
A
What does the OB offer you then, at that point? Like, is it maintenance about your expectations and getting ready for what it means? I mean, I don't. I really don't know another way to ask this. I know that you're farther along. Do they. They offer to terminate the pregnancy? Like, what's the whole conversation like?
- [08:45]
B
Yes. So the. Basically, the next step was that he told me I should get a amnio. And basically, it's where they stick this, like, fine needle into my stomach and take some amniotic fluid. And then that will tell them, you know, a higher chance of if my baby has down syndrome or not. And then they kind of go over next steps along with that. There's a risk of miscarriage because you're sticking something foreign inside your body, and it could try to reject it, which in turn would reject the pregnancy. But he was very adamant, told me that there's one doctor in town that's really great about doing these, and I need to go over there right away. He had made an appointment. A lot of people don't do this because of the risk, but I wasn't sure. I was just throwing all this information. And so I did it. I went over there, I did the procedure, and, you know, luckily there was no complications from that. And it was about maybe two weeks later, I had got a call from the office, and the woman had said, you know, I'm so sorry your daughter, you know, or she said, I'm so sorry your baby has down syndrome. And then she said, do you want to know the gender? And I said, yes. And she said, it's a girl. And then she said that we have to ask, but, you know, there are options if you would like to term.
- [10:06]
A
So then there's my question, like, why get the test, if you're not considering that. Right. So was that in your mind?
- [10:12]
B
Right. No, no. Honestly, I think really what I wanted to do as far as, like, getting the test was just so I could be more knowledgeable and I would know what's coming. I'm big on, you know, support groups. Like, when she was diagnosed with type one, I joined, you know, a bunch of support groups and the Juice Box podcast group just so I can get more knowledge. And I did the same thing when they told me about her down syndrome diagnosis.
- [10:38]
A
Okay, so you didn't say to yourself, well, let me get this test, because maybe I'll. I'll terminate if. If, if it's. So you were just doing it because you were a little, maybe flustered and they were directing you towards doing the test.
- [10:51]
B
Right, Right. Yeah, it was just very like, let's go, let's go right now. You know, urgency, hurry up type of deal. Yeah, yeah.
- [10:57]
A
You're single, Mom. Are you married?
- [10:58]
B
I am not married. I do have a boyfriend. Kay's dad and I aren't together. We split when she was about three months old.
- [11:05]
A
But at the time of your pregnancy, that wasn't the case. So do you go to him? Does he get a vote in all this? How does that work?
- [11:11]
B
Yeah, he does. He actually wasn't concerned at all about her having down syndrome. We were both, you know, very okay with her being born with down syndrome. I was just, you know, worried, of course, as I think most moms are, would I be capable of giving her what she needs? But I at no point thought that I, you know, didn't want to have her.
- [11:32]
A
Okay, well, it's an interesting forward and backward looking question. What does that mean, giving or what? What is the need and are you able to give it to her now that it's. It's a reality?
- [11:42]
B
Yeah. So, you know, I just knew that with her having down syndrome, she could have a lot of complications right now. I mean, she's still in physical therapy at 4 years old. She's in occupational therapy, speech therapy. I knew, you know, in a way that those things were a possibility. There was a lot of unknowns. So I just wanted to make sure that I could just give her every opportunity to succeed like everybody else.
- [12:12]
A
When you start digesting the information around all this and you're understanding what things might be like and what the needs are going to be, did it make you consider the termination or. No, no, no. Okay. You have four years of hindsight now.
- [12:29]
B
Yes.
- [12:30]
A
Such a ridiculous question, because I'm asking you if you would throw your kid out a window, and you obviously wouldn't, if you could take yourself out of your situation and, let's say, put you with a mom who's getting similar news, but now you're there to help her through it, would you tell her terminate or would you tell her, no, don't.
- [12:51]
B
I would tell her no. I mean, ultimately, I am always going to be pro choice, so I would just give them the knowledge that I have and what's helped me. Because every child, you know, down syndrome or not, is different with, you know, being possibly being born with health complications.
- [13:06]
A
Okay.
- [13:07]
B
So I would look at it like telling her all the knowledge that I have, all the resources that I found the community, and then, you know, go from there.
- [13:15]
A
Go from there. Is it as difficult as I'm imagining, or is it not as difficult as I'm imagining to raise her?
- [13:22]
B
It can be only because she's talking more at 4. Sometimes it's still hard to understand her. She does get frustrated with things easily. It's still hard for her to learn and grasp things. A lot of times it feels more like she's maybe 2 than 4, because I still can't leave her alone for one second without her grabbing something or, you know, running away, especially in public. I have to have a tight grip on her. Otherwise she runs off. She doesn't understand. Like, stand right here for one second, you know, so that can be a little hard.
- [13:57]
A
Yeah. I feel like I'm asking you a ton of difficult questions, and we just. We just started talking. I'm okay. All right. Thank you.
- [14:02]
B
Yeah, you're good.
- [14:03]
A
Did that have an impact on your relationship? Like, did that boy, could he not handle it or. Or what happened? Does. I guess. Does that have anything to do with the dissolution of that relationship? When you think of a CGM and all the good that it brings in your life is the first thing you think about. I love that I have to change it all the time. I love the warmup period every time I have to change it. I love that when I bump into a door frame, sometimes it gets ripped off. I love that the adhesive kind of gets mushy sometimes when I sweat and falls off. No, these are not the things that you love about a cgm. Today's episode of the Juice Box podcast is sponsored by the Eversense365, the only CGM that you only have to put on once a year. And the only CGM that won't give you any of those problems. The Eversense 365 is the only one year CGM designed to minimize device frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping. You can manage your diabetes Instead of your CGM with the Eversense365. Learn more and get started today at eversensecgm.com JuiceBox 1 Year 1 CGM this episode is sponsored by Tandem Diabetes Care and today I'm going to tell you about Tandem's newest pump and algorithm. The Tandem Mobi system with Control IQ technology features Autobolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my tandemdiabetes.com juicebox. This is going to help you to get started with Tandem's smallest pump yet that's powered by its best algorithm ever. Control IQ technology helps to keep blood sugars in range by predicting glucose levels 30 minutes ahead and it adjusts insulin accordingly. You can wear the tandemoby in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately. Clip it discreetly to your clothing or slip it into your pocket head now to my link tandem diabetes.com juicebox to check out your benefits and get started today.
- [16:20]
B
No, I don't think so. Honestly, he was truly very open and accepting of her being born with down syndrome. So that really had nothing to do with our relationship ending.
- [16:29]
A
Okay. Okay. I guess as a forward looking what are your expectations? Like what are your goals? Like, you know, you talk. I just got it's so by the way, my life is strange because I just got done recording with somebody. It was such a silly giddy conversation and then I didn't read the notes about yours. Then you jumped on. I was like oh, that sobered me up pretty quick. I was like okay. But I found myself talking with her about her concerns about what's coming about diabetes. So I mean splitting these two things apart for a second.
- [17:02]
B
Yeah.
- [17:03]
A
What are your long term goals and concerns around the down syndrome?
- [17:08]
B
My long term concerns, I just want her to be at least semi independent. Like I'm not unrealistic with the fact that she'll probably live with me forever, which is fine. I just want to teach her what I can to be semi independent to where if I need to just run to the gas station or run to the store for a couple items. When she gets older she's okay to get a snack or make an easy lunch or something like that. And I want her to still be involved within the community and have friends and do other activities.
- [17:48]
A
Okay, so you just want her to have as normal a life as possible with an expectation that maybe five or six minutes you could, you could stop for, for a little bit. Yeah.
- [17:56]
B
Correct. Correct, yes.
- [17:58]
A
You ever notice in public when you see adults with down syndrome and they're with their parents that their parents look like they're a thousand years old and would have died years ago if they could have, but they just don't feel like they can?
- [18:09]
B
Yes. Yeah, I do. Yeah.
- [18:12]
A
Right.
- [18:13]
B
No, it's not, you know, that's, that is, I think a lot of parents concerns, to be honest. I see a lot of posts about wondering how their child is going to be as an adult when they're gone. You know, like, who's going to take care of them? Are they going to be able to even live in like a, like an assisted living home or like, like a group home where there's, you know, like the little apartments in a community? Like, can they do that and would they make it without me? It's, it's a huge concern.
- [18:38]
A
Right. I've brought this up a couple of times in the podcast over the years because it really is, I'm not joking. I really get that feeling. Like, I don't honestly know if that's what's happening, but yeah. Do you see those parents and you're like, oh my God, like their son is 40.
- [18:51]
B
You know what I mean?
- [18:52]
A
That lady's 85. She shouldn't be at the mall, and yet there she is. And it almost like it gives you that feeling from a third party perspective of like, she knows she can't stop and, and it almost feels like it keeps her alive. Like it's a very, I don't know, like maybe I'm wrong or maybe it's just me being weird or pushing my thoughts onto a situation, but really has struck me that way a number of times in my life.
- [19:14]
B
Yeah.
- [19:15]
A
And do you have that feeling of like, wow, I have to take good care of myself. Does that all strike you?
- [19:19]
B
It does, yeah. Especially because I don't have, you know, any other kids at the moment. I'm not sure if I will. So, you know, in hindsight, I don't know if there will be anyone else to help take care of her when I'm gone. So absolutely, it is, you know, important that I try to, you know, be there for her as long as I can.
- [19:38]
A
If you had another baby and, you know, it didn't have any issues at all, even just. Just having a baby with, you know, no extra stuff. Would that tax your day in a way that would be difficult?
- [19:51]
B
Looking at it right now? Possibly. Of course I would figure it out, you know, as people do. They would just make it work. You know, when you really want another child, you just kind of figure it out and it gets added to, you know, your daily routine.
- [20:03]
A
Yeah, currently.
- [20:03]
B
Right now, yes, it would. Just because she has therapy two or three times a week and, you know, just other activities. I try to take her to doctor's appointments, and then, you know, you throw in management of type 1 diabetes. So then it's a lot. It can be. Yeah.
- [20:19]
A
Yeah. No, I imagine. Does it leave any time for you to look for relationships? You've probably heard me talk about US Med and how simple it is to reorder with usmed using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up? They don't just randomly call you. But I'm set up to be called if I don't respond to the email because I don't trust myself 100%. So one time I didn't respond to the email, and the phone rings at the house. It's like, ring. You know how it works? And I picked it up, I was like, hello? And it was just the recording. It was like, US Med doesn't actually sound like that, but you know what I'm saying? It said, hey, you're. I don't remember exactly what it says, but it's basically like, hey, your order's ready. You want us to send it? Push this button if you want us to send it, or if you'd like to wait. I think it lets you put it off like a couple of weeks or push this button for that. That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it. Usmed.com juicebox or call 888-721-1514. Get your free benefits checked now and get started with usmed Dexcom Omnipod Tandem Freestyle. They've got all your favorites, even that new eyelet pump. Check them out now@usmed.com juicebox or by calling 888-721-1514. There are links in the show notes of your podcast player and links@juicebox podcast.com to us Med and all of the sponsors.
- [21:47]
B
Yeah, actually, so my boyfriend, who I'm with now. He actually has a sister who's 21 that also has down syndrome, so that worked out perfectly.
- [21:57]
A
Is that how you found each other?
- [21:59]
B
Yes. Yeah. Actually, I met him through our local Gigi's Playhouse, which is a Down syndrome achievement center. So I met him through that, and it's been great. It's super helpful that he and his family understand down syndrome. And, you know, there's no.
- [22:14]
A
Yeah. You almost have a relationship that's also a community.
- [22:18]
B
Right, Exactly.
- [22:19]
A
Right. Oh, isn't that interesting? And then it worked out you actually liked each other romantically too, right?
- [22:25]
B
Exactly. Yep.
- [22:26]
A
Good dumb luck. Also, I would imagine, probably. Probably would have given you a little extra time. I would have been like, look, I don't feel great about it right now, but I'm gonna hang a little longer and see what happens, because you're a pretty good match. Can you join forces or the age difference of your kids, is it too different?
- [22:43]
B
It can be too different. As far as that, K loves, you know, hanging with his sister and they get along great and, you know, she'll play dolls with her and entertain her in ways, you know, where Kay just has so much fun. Yeah. Certain activities, you know, I mean, his sister doesn't maybe want to go to, like, a lot of littles playgroups and stuff, but we make it work.
- [23:06]
A
His sister, it's not his daughter or something like that too.
- [23:09]
B
Right, Right. Exactly.
- [23:10]
A
She's not his daughter.
- [23:11]
B
Right.
- [23:11]
A
Okay. All right. I feel like I have a pretty firm grasp of this. So you're making your way through this life and then the diabetes comes. And now there. Tell me the first time you break down and. And run into the garage and start talking to yourself.
- [23:27]
B
I mean, to be honest, I. I think honestly in the hospital, I just, you know, the first time I was able to kind of come home and nap, I think it was like the second day my parents came up there, and my dad's like, you're too tired to even drive home. He's like, I'll drive you home. You can take a shower, you know, have a. Take a nap and rest, and then I'll pick you up in a couple hours. And I think it was just then that I just, you know, had my. My breakdown. It was a lot, you know, and I'm just thinking about the future. And, you know, my concern, of course, is, is she going to be able to self manage even a little bit, you know, as she gets older?
- [24:03]
A
She's too young for you even to have the answer to that question. Yet.
- [24:06]
B
Right, right.
- [24:06]
A
Yeah, it just hangs over your head and you just get to wonder about it.
- [24:09]
B
Awesome, right?
- [24:10]
A
Yeah, just awesome. Thanks, everybody. Yeah, it's going great. It's going great. Wow. So realizing you can't even get home from the hospital to shower yourself, you're like, oh, how is any of this going to go? Your dad seems like he's paying attention, sees what's going on. Are they still involved? Like, does this become a kind of a Takes a village kind of a situation?
- [24:31]
B
Yes. Yeah, actually. And thankfully we do live with my parents, so they help me out a lot. You know, I've taught them enough, at least enough about diabetes to where, you know, I can go out with friends or go to dinner or what have you take a break and then they're able to manage it just fine.
- [24:46]
A
That's lovely. How old are you? Did I ask?
- [24:48]
B
No, I am 33.
- [24:50]
A
33, okay. So this happened in your late 20s. Gotcha. Do you think you'd live with your parents if Kay didn't have down syndrome?
- [24:58]
B
Honestly, probably not. Just because right now, with all her needs, it's been hard for me to kind of work full time. So I'm thankful that they've allowed me and Kay to stay here and, you know, I can work part time and, you know, take care of the things that I need to while also taking care of her therapies and appointments. But I do believe if she did not have down syndrome, I probably would not be living with them. No.
- [25:22]
A
Okay. Are you angry about that at all? Do you have feelings about it?
- [25:26]
B
I do wish that there wasn't maybe so many complications as far as, like, you know, with now with the type 1 diabetes and then, you know, her having down syndrome and, you know, I could stop all the therapies, but I wanted to keep those going at least until she went into kindergarten next year to give her the best opportunity, you know, that I can. So part of me, you know, I do look at my friends who, you know, have typical children and, you know, wonder. But I do love K. And honestly, I mean, I wouldn't change anything, despite all the struggles.
- [26:01]
A
Yeah. I don't mean to say that you would. I'm just trying to. I'm just trying to. Yeah. Figure out. I mean, I'm trying to pick through your life in an hour. You know what I mean?
- [26:07]
B
Like, yes, I know it's a little.
- [26:09]
A
Ham fisted sometimes, but you got to get to it a little bit. Will she go to, like, a regular public school?
- [26:16]
B
Yes. Yeah. She's actually currently in preschool at our public school. And so she's doing that in a general education classroom currently. So she loves going to school, and that's still the plan. I'm not, you know, a parent that will try to force the school to keep her in general education if it doesn't fit her needs, if she's struggling, and maybe needs that more smaller, like, environment to learn. But for now, it's working out really well.
- [26:41]
A
Okay, great. I wanted to know if her speech is on schedule for somebody in her situation or if it's behind.
- [26:49]
B
I'd say for someone in case situation. It's about on schedule. She's doing pretty well.
- [26:55]
A
Awesome. And then so your expectation is that at some point you guys will be able to communicate pretty well?
- [27:01]
B
Yes, exactly.
- [27:02]
A
Awesome. Oh, that's really cool. All right. Why did you want to come on the podcast?
- [27:06]
B
I enjoy listening to all the episodes and everyone's story, and I don't know, I just wanted to be able to have a chance to tell my story and talk, and I just thought it was really fun and exciting moment to share my life.
- [27:18]
A
Oh, I appreciate that. Awesome. Thank you. Well, I've asked as many questions that have popped into my head, but what should we know about k. About living in the situation you're in? What do you imagine people don't understand?
- [27:31]
B
Hmm. You know, honestly, Kay can live a typical life like you and I. It just may take a little longer for her to reach, you know, certain goals or milestones. She does have to work harder for certain things. She didn't start walking until maybe a week or two before her second birthday, so that took her a little bit longer. She's recently, within the last year, learned how to jump, which she's really excited about. You know, it's just the lower muscle tone takes her a lot longer with talking and running and jumping and everything. You don't think about how much our muscles impact our daily life, especially with eating too, you know, So I just want people to know that, you know, she's still capable of doing everything that she wants. It just may take her a little bit longer.
- [28:23]
A
Okay, what's the physical therapy like? Is it literally like physical therapy, occupational therapy? Or is it. Or is it. Do they give you home things to do? Like, how involved are you in it?
- [28:34]
B
When she was younger, I was back in the same room. I was watching what they were doing, but as she got older, I was more of a distraction. So I'm able to kind of just sit in the waiting room and wait for her. But what they are working on is walking on, like, a balance beam for balancing and walking upstairs, climbing ladders, jumping over things. Anything that could help her, you know, in her typical life of, you know, just even playing on the playground at school safely. Anything like that.
- [29:03]
A
I feel like we all know, you know, you say down syndrome, I think I feel like we have a. Like an image in our head of what that means.
- [29:10]
B
Right, right.
- [29:11]
A
If you had to explain it to somebody who had no concept of it at all, like, would you go back to there's chromosomes and, you know, would you start there? Or, like, how would you explain it to a person who's listening right now and goes, I really don't know what that is?
- [29:25]
B
Yeah. So I would probably honestly go from the beginning. You know, actually this month is down syndrome awareness month in October. So every day I've been sharing a little fact about down syndrome or, like, myths for people. So I love doing that and advocating and it's just a lot of fun for me. So typically, if someone's like, you know, I've never encountered anyone with down syndrome, I don't even know how it occurs, I would just honestly start from the beginning. You know, it's down syndrome. You have a third copy of the 21st chromosome, and, you know, that's how it's created. You know, they all have similar features, but studies have actually shown they do still look like their family as well.
- [30:07]
A
Is it in your family at all, anywhere? Have you traced it back? Has anybody else had a baby with Down?
- [30:13]
B
No, no, no.
- [30:15]
A
Is it something that has to do with the mix of you and that boy that's not around anymore, or is it not about that?
- [30:23]
B
Yeah, actually. So there's three types of down syndrome, and the most common is trisomy 21, which is basically the medical term for down syndrome. And then there's also translocation. That one is genetic, so that one typically can be traced back to genetics. And that's actually the type that Kay has, and she inherited it from me.
- [30:44]
A
Oh, so that's the thing that you had, but it wasn't. How did they. I don't know the word. It's not a dominant.
- [30:51]
B
Yes. Yeah. So basically, when she was born, they tested her blood again just so they could tell me what type of down syndrome she had. And then when they discovered it was translocation, they tested me and her father and I have what's called balanced Robertsonian translocation. It's a lot, but basically, whatever, you know, chromosome mishap I had, it didn't impact me physically or anything. But it made it, like, a higher chance to pass it on to my future child, which is what happened with K. Yeah.
- [31:28]
A
And so you have no. Like, there's nothing about you. The way you look, the way you talk, the way you act, anything. I would have no idea that you're carrying this.
- [31:36]
B
Right? No idea.
- [31:38]
A
That's something. Yeah. I'm looking here. Trisomy 21, 95% of cases. Every cell has an extra 21st chromosome. Stop me if I'm wrong here. Translocation 3 to 4%, a part of a chromosome 21, attaches to another chromosome. And then there's mosaic, 1 to 2%. Only some cells have the extra chromosome, leading to milder effects, it says.
- [31:59]
B
Yeah, yeah. Mosaic. You usually with mosaic, you can't really tell at all, even physically. Actually, I read a story a couple months ago about this woman around my age who had, I think, like, two or three kids with down syndrome, and they finally just did further genetic testing, and she had mosaic, and she had no idea, you know, Idea. So it's crazy.
- [32:21]
A
Oh. Oh, that's interesting. I see what you're saying. She probably said, I'll have one more. This won't happen again.
- [32:26]
B
Right, right, exactly. Yeah.
- [32:28]
A
She was a Down syndrome factory and didn't know it.
- [32:30]
B
Yes. Yeah. Yeah.
- [32:32]
A
How about that? What about some of the health concerns that can come along with them? Hearing, vision.
- [32:37]
B
Yeah.
- [32:37]
A
Heart defects, like that kind of stuff. Is that worth worrying about? Or how do you track it? How do you stay ahead of. I mean, because, I mean, I got leukemia on this list as well, and a number of other things.
- [32:48]
B
Yep. Yeah, all of that. And that was my concern, too. Like when I was pregnant with her, as I mentioned, I joined all the support groups. I joined a pregnancy group. And that was hard because there is also a higher risk of stillbirth. And so then, you know, sometimes that parent would post that they lost their child even before they were born. And, you know, that's always, like, sitting there like, oh, please. You know, that I. You know, it's horrific, you know, and you just don't want that to happen. And there's so many, you know, health issues, like heart issues. Kay had a smaller hole in her heart. I forgot the technical term. But luckily that closed on its own, so she didn't need any intervention with that. She does have hearing loss in her right ear, but so far, no vision.
- [33:32]
A
Oh, that's great. I mean, you know, anything that's positive is positive, I think.
- [33:37]
B
Right, Exactly. Yeah.
- [33:38]
A
Weird question. There's a comedian named Shane Gillis Yes.
- [33:44]
B
Yeah.
- [33:45]
A
And he does a bit about. Is it his nephew or his cousin?
- [33:48]
B
His uncle.
- [33:49]
A
His uncle, yeah. His uncle has down syndrome. Right.
- [33:52]
B
Yeah. Yeah.
- [33:53]
A
So, you know, I don't know one person personally who has down syndrome, and I find his bit amusing. Right, yeah.
- [34:00]
B
Right.
- [34:00]
A
And not only that, but I actually think he. He's doing a pretty good service by he says to people all the time, like, my uncle's the happiest person I know.
- [34:08]
B
Right.
- [34:08]
A
You know, like, that guy is always happy, I think, is how he puts it. Right. When you hear that, I'm so interested, because I'm going to expand this in a second, but, like, insulting, upsetting, amusing, normalizing. How does it strike you with him?
- [34:24]
B
I think, you know, he did go on to positively say that, you know, his. His uncle's happy. I can't the full bit, but I know he said something in there that, like, upset the community, including myself. And I'm trying to remember.
- [34:37]
A
Yeah, that's what I'm wondering, what it was.
- [34:39]
B
Right, right. Yeah. And I'm trying to think of what about that. Because whatever it was, I do remember I watched the skit and like, the. Even the crowd was, like, quiet for like a second, and then he was like, oh, no, he's great. You know, he's the happiest person I know. You know, kind of like rebuttal, you know, And I can't. I can't remember what I was.
- [34:57]
A
Interesting, because it was upsetting. But it didn't stick to you. Okay.
- [35:01]
B
Right.
- [35:01]
A
Yeah.
- [35:02]
B
It's hard because I try not to let all that sit in my mind, but I know in the moment there was a lot of comments about what he had said.
- [35:14]
A
I mean, he did it on. I'm sure in his standup, like, whatever you're in a club you expected. But he did it on Saturday Night Live, right?
- [35:19]
B
He did, yeah.
- [35:20]
A
I guarantee it was shocking because nobody expected him to talk about it. I think maybe the funniest part of it is he's like, he always has a cheese sandwich with him or something like that. Not why I bring it up. Why I bring it up is because. Because I hear people have these reactions to when somebody makes some dumb joke about. About diabetes, and usually they don't say type one. Right. They make. And I see the reactions from, like, oh, you know, that was funny. To. Well, listen, it wasn't funny, but I. I don't have a problem with it. To. This is upsetting or it feels like an attack. Like, it's a spectrum of reactions people have. And I Mean, this is just a specific one that I guess, looking for how, like, if you. How hard is it to see the humor in something that is, like, so, I mean, obviously impactful on your life and on your daughter's life as well. Like, I'm trying to see everybody's perspective. I'm actually asking you this to try to figure out the perspective of the other people with the type. One thing, I guess, is where I'm digging through.
- [36:17]
B
Yeah, I think honestly, it depends on what they say and how they say it because, you know, we know comedians are going to joke. Like special needs, unfortunately, you know, has always been a joke and, you know, like you said. Now I've also realized Type one, you know, has been jokes and comedians lineup and stuff too. So. But yeah, I think, to be honest, it really just depends on how they say it and, like, what they say. Right. You know, because, like, his whole bit of, like, oh, yeah, he's the happiest person I know. Like, yeah, I mean, that is the whole, you know, statement and joke kind of as well overall is that, you know, people with down syndrome are always happy. And that was actually something I posted about this month. Like, you know, they have emotions just like you and I, and I can tell you K is not always happy. But, you know, I feel like they do see the world differently than us and they don't notice all the horrific things, you know, that can happen or that does happen. I think that does help, though, in turn. So I think that's kind of where that line that they're always happy comes into play.
- [37:16]
A
That's great that you said that. So the idea is, like, I don't care how. How it appears to you from the outside. Like, she is a person and she's having a full range of issues and emotions too.
- [37:27]
B
Yes. Yeah.
- [37:28]
A
Oh, I'm glad you shared that. It's awesome. But the other side of it is, is it. At no point is this, you know, is Gillis's like, uncle worried about, like, global politics or something like that, Right?
- [37:40]
B
Yeah, exactly. Exactly. Yeah. Yeah. That's the beauty of it. You know, they don't, you know, you don't worry about that.
- [37:46]
A
I don't know. I don't care about what the data centers are going to do, the electrical grid. Be honest with. You don't even know what you're talking about. Like, I'm not gonna lie to you. Like, you're in a tough spot. Like, there's.
- [37:55]
B
There's no kidding.
- [37:57]
A
I'm not that you don't know, but.
- [37:58]
B
Like, I do, yes. Very aware.
- [38:01]
A
I'd like to acknowled. Acknowledge it, I guess, is what I'm saying. And you seem very upbeat around the whole thing, and. And that's why I asked you the other question. I want to see what you. I just wanted to see what you would say. How do you stay upbeat like that? Is it. Is it a struggle, too, or is it not?
- [38:16]
B
It can be. Yeah, it definitely can be a struggle. There are probably more days where, you know, at the end of the day, I'm just mentally exhausted, you know. K. Actually about maybe a month ago, was also diagnosed with autism, so. And I've noticed, like, a lot of sensory issues, mood changes, you know, so that's been hard to navigate because I just. As I mentioned in the beginning, I want her to have every opportunity and to try to, you know, best learn to communicate with me and everybody else so I can give her what she needs and what will help her. So some days, mentally. Yeah, by the end of the day, I'm just. I'm exhausted.
- [38:52]
A
Where. Holy. So is there autism in your family?
- [38:55]
B
No, not that. Not that we're aware of. No. But when you also have down syndrome, you can also easily get autism. It's a very common dual diagnosis.
- [39:04]
A
Oh, gosh. Oh, geez. Did that add another layer or did it just explain things?
- [39:11]
B
I think it just explained things for now. I'm not really doing anything extra at the moment as far as, like, regarding autism specifically, but it definitely helped explain things a little bit better.
- [39:23]
A
Examples of things like irritability, you know.
- [39:26]
B
I mean, she's also a toddler, so I do put that into play. And to be honest, a lot of times when you bring up extra concerns with mood or even medically, a lot of doctors are like, oh, well, she has down syndrome. That's to be expected. That was also a concern of mine, too, because I'm like, okay, does she have autism? Does she have adhd? She could have that, too. She's very particular. If the door's open, she wants to shut it. She gets mad if it's not shut, or the cabinet. I think that's the biggest struggle is when you go to a medical professional for help. A lot of times they're like, oh, well, it's just because she has down syndrome. When, you know that's not. That's not always the case. You know, there could be underlying problems because she has down syndrome, but it's not the answer to everything, and it doesn't mean that something else shouldn't be looked into.
- [40:13]
A
Yeah. I'm looking at it here, and I don't know that they completely understand the connection, but it does say, where is it here? Roughly 15 to 20% of individuals with down syndrome also meet the criteria for autism, which is higher than the general population, where autism affects about 1 in 36 children, or 2.8%. Yeah. Wow. I think this is the point when I ask if you're okay. Are you okay?
- [40:40]
B
Yeah, I'm okay. I'm okay.
- [40:41]
A
Can I send somebody to give you a hug?
- [40:44]
B
Right. You know, yeah.
- [40:45]
A
You know, that should be a service, by the way.
- [40:48]
B
It should be. To be honest, you know, I've. I've, like, I've. I don't know. It's hard. I've looked into anxiety meds, you know, because, of course, adding on type one to all of this now, I just feel like, you know, there's definitely a percentage of us, I'm sure, that have developed anxiety through all this. For sure.
- [41:06]
A
Let's go through all the stupid things I'm about to say. Hey, my chat GPT must be like, at the end of the day, must be like, this poor guy has so many problems because I don't say I'm talking with somebody. I need to ask a question. And probably just like, I think he's got like, a thousand different things going on. Would it be crazy if we started an add on to doordash where the doordasher gave you a hug at the end? Like, an extra two bucks for a hug, like, you know what I mean? And you could decline it if you want. Can you imagine the guy's like, hey, the. The person who sent you the food also got a friend. You're like, no, thanks.
- [41:35]
B
Yes, right, right.
- [41:37]
A
Not. Not from you, but. Oh, thank you.
- [41:40]
B
There's.
- [41:41]
A
Boy, that's, you know, like, you know, when, like, a service dog comes to a hospital, can we start sending people to people's houses to be, like, cuddle?
- [41:48]
B
Yeah.
- [41:50]
A
Listen, if somebody wants to donate a large amount of money, I'll start that right now. I'll just send people out to people's houses with type one who ask for it, and they can just give them a hug and you can, like, say whatever you want to them. And, like, they bring a punching bag if you want to hit it. You know, whole thing happens on your front step. It's really nice.
- [42:06]
B
Yep. Yeah.
- [42:07]
A
Oh, my gosh. Have you considered therapy or, like, I mean, I mean, honestly, seriously, Jessica, you're young.
- [42:14]
B
Yeah, I know.
- [42:15]
A
Yeah. It's fun to. Fun. Fun's the wrong word. It's interesting. It's interesting to sit here and philosophize about, like, living till you're 90 because you feel like you can't go anywhere, blah, blah, blah. But that's a lot of time between now and then.
- [42:29]
B
It is, yeah. Yeah. I mean. And I've. I've looked at therapy. I did actually do therapy when she was first born. She actually. We had. She was stillborn, so I had a very traumatic birth where she was breached, and I had her at 36 weeks. I had no idea that I was in labor. I just thought it was Braxton Hicks. The. Basically, the ambulance. We called the ambulance. They came to pick me up and take me to the hospital. And by the time they had got to the house, Kay's foot was already out. So the paramedic was just like, hey, you want to do this? We can do this. Let's do this on the way to the hospital. And so I was like, okay, sure. You seem to know what you're doing. So I started to labor and have Kay in the ambulance. But when we got closer to the hospital, I stopped contracting, and her head was stuck. So we rushed into the hospital, and they put us in this tiny closet room, the first room they had available. All these doctors and nurses were surrounding us. And I remember the doctor, he stuck his hands inside, he flipped her and pulled her out, and she wasn't breathing, and so they had to resuscitate her, and they had to do it a few times before she was able to be brought back. So that alone, after all that, I was like, yeah, I. I need to. Yeah, that's enough. I need to talk to a therapist.
- [43:49]
A
Yeah, I'm good. Adult time's over.
- [43:51]
B
Yes.
- [43:52]
A
You just taught me something I really want to appreciate. Tell you how much I appreciate that. I just assumed stillborn meant a death, but.
- [43:58]
B
Yeah.
- [43:59]
A
Stillbirth is when baby is born with no signs of life, meaning no breathing or heartbeat or movement after 20 weeks of pregnancy. In most countries, they use 24 weeks. It's different from a miscarriage when a baby dies before 20 weeks. Neonatal death is when the baby is born alive but passes away shortly after. So the medical definition, a stillborn baby is one who has already passed away before or during delivery, but it doesn't necessarily mean they can't get you back from that. I didn't. Like, it never occurred to me. That's like, a real miracle. Wow.
- [44:28]
B
It is. Yeah. I mean, yeah. Go ahead.
- [44:31]
A
Oh, I'm gonna give you the chance. Is anything going right? Could you Make a list.
- [44:37]
B
Yeah, actually, yeah, Kate has a service dog as of like two months ago for her, the diabetic lure dog. So that's going great.
- [44:43]
A
So, yeah, you know, I mean, once you said about the stillboard thing, I was like, actually, here's what I thought. Jessica, let me be clear in my brain. I went off. Really. And like, I didn't say that out.
- [44:53]
B
Loud, but let me tell you. Yeah. Do people just walk up to you.
- [44:59]
A
And punch you in the face? Like, I mean.
- [45:02]
B
Yeah, you know, anytime I tell people, like, the. The full thing and everything, they're just like, oh, my gosh. Yeah. You know, it's crazy.
- [45:11]
A
Well, you listen, people probably high five you for getting dressed. They're probably like, look, Jessica, she got dressed, she took a shower, she's doing great.
- [45:20]
B
Right? Looks good today.
- [45:21]
A
This whole thing has lowered the bar for you extensively. You are, you are succeeding no matter what every day.
- [45:28]
B
Right.
- [45:29]
A
Does it feel like you're having to set, like, short term accessible goals to keep yourself motivated or upbeat?
- [45:37]
B
Yes, I think that that definitely helps because I feel like if I look too far into long term goals or the future is where I feel like I can get stuck. So I do look more towards short term goals or fun things that are coming up. Something to keep me positive about everything.
- [45:55]
A
Yeah, No, I bet you're super excited for that new Spider man movie next year, right?
- [45:59]
B
Yeah, can't wait.
- [46:03]
A
That little boy, he's marrying that girl from the Dune movies. Isn't that nice? And they're going to be in a Spider man again.
- [46:08]
B
Yep.
- [46:09]
A
I guess. I'm joking, but I'm serious. Like, I. As I'm listening to you, I keep thinking that there's very little value in you trying to prognosticate out 5, 10, 20 years. Like I would, I would do. Not that you're in, like, survival mode. I don't think it's that. I mean, you really do have a good way about you talking about this. Like, unless you're pretending I'm happy for you. And if you're pretending, I would understand that too. I really do think, like, you know, what can we get done this week? What would be happy, exciting, joyous for us this week? I think that's what I would do if I was you, I guess, is what I'm saying.
- [46:45]
B
Yeah. Yeah. And that's. I mean, that's what I basically do. It works well, you know, like you said, you can't honestly look too far into the future and think about, you know, what ifs a lot of the down syndrome support groups. Some parents are like, what's your child's adult life look like? And, you know, will my child be able to do this? And a lot of them are like, you can't. You can't even think like that. You just have to live it day by day because you don't know. You don't know what they're going to be able to do or if they're going to live on their own independently, or if they're going to live with you, if they're going to get married, you know, any of that stuff. So a lot of times it's like, just take it one day at a time. Enjoy your baby. You know, live life.
- [47:23]
A
Yeah, no, I can't agree with that more, I don't think. I mean, in a world where, like, a company has good news and their stock falls, I don't know how to guess what your daughter's life's going to be 20 years from now.
- [47:32]
B
Right.
- [47:33]
A
Too many variables that are unknown to you. And if you're going to sit around and try to figure out what each one of them is so that you can, like, put this together in some Machiavellian way, I think you're crazy. Way before she's 20 years older.
- [47:46]
B
Right? Exactly.
- [47:47]
A
You'll make yourself nuts, I would think. I mean, just again, going off the conversation I just had, this mother's just worried about, like, how's her kid going to be with diabetes when he's 21 and maybe living on his own and. And the human mind almost can't, like, wrap itself around all the possibilities there to come to an answer. And it's making her. It's making her nervous and. Yeah, no, you're doing the right thing. You smoke a lot of weed?
- [48:12]
B
No, actually, no, I don't. What do you do to relax, you know? Well, I try. I tried anxiety meds, but it made me sick. So to be honest, I just.
- [48:22]
A
By the way, that. That's pretty par for your life, I would imagine. You're like, oh, this medication will make me feel better. Nope. God damn it.
- [48:29]
B
Yes. Literally, like, I went to my doctor, I was like, listen, you know, it's already. You know, she's already like, take a half a pill. It can make you nauseous. I took a half of a. Half of a pill and I still felt sick. And I'm like, please, like, what else do you mean? Yeah, yeah, yeah.
- [48:45]
A
No, also, I don't see how you could be high all the time and take care of your daughter. I think that would Be insane.
- [48:49]
B
I'm also not impossible.
- [48:51]
A
I was joking, but.
- [48:52]
B
No, I know.
- [48:53]
A
Yeah. I said you go out with your friends sometimes. Right, Right. But, like, do they have kids?
- [48:58]
B
Yeah. So, you know, some of my friends have kids. Some. Some of them don't. You know, so sometimes we go out. We go out to dinner, go out for karaoke or something. But, you know, it is hard to, you know, go out because I am, you know, the sole, you know, caretaker for K. My parents work, so I'm not gonna, you know, ask them. Oh, yeah. After you're done working all day, like, can you watch her all night? You know, so.
- [49:21]
A
Yeah. Are you. Are you able to partake in those conversations, like, openly, or do they complain about, like, their kitchen paint being the wrong color and you're like, oh, go yourself. Like, how does that. Like, yeah. Is that tough for you?
- [49:34]
B
I mean, I feel like I can openly talk about my struggles now, whether or not somebody may fully understand it, you know, it's same thing if you talk to somebody else who doesn't have a child with type one. You know, you can explain it and. But. And they may just be like, wow, that sounds rough, or, you know, how do you do it? But they don't, you know, fully understand. Which is why I'm also glad. I have a lot of moms within the down syndrome community, locally and not locally, that totally understand, you know, at least the aspects of down syndrome and what that can entail. So that helps a lot, too.
- [50:06]
A
It seems really important, because at the very least, when you're. When you're conversating with them and they walk away, they don't turn their back on you and go, oh, my God, poor Jessica. Like, you know what I mean?
- [50:16]
B
Right.
- [50:16]
A
Because your friends might be like. Like, they might have so little context for what you're saying that, you know, you. Your situation probably sounds even more dire to them than it actually even is, you know, and so.
- [50:30]
B
Exactly.
- [50:31]
A
Yeah. And then. And you must not be unaware of that. Right? Like, in. So you don't. And you don't want to be pitied, I would imagine.
- [50:38]
B
Right? Yeah.
- [50:39]
A
Right.
- [50:40]
B
Yeah. I mean, it's. Yeah. Like I said, I don't want to be, you know, pitied. I mean, there's been times where me or even, like, my parents have told me they've, you know, talked to friends or met someone out in public, and they're, you know, they're not shy. Like, they're like, our granddaughter has down syndrome. And they'll be like, oh, I'm so sorry. And they're like, why? You know, we're not. Like, it's fine, you know, so that's. I think that's just an automatic reaction, too.
- [51:02]
A
What would you prefer in that situation? Like, instead of somebody offering their. Their. I'm sorry. I mean, am I handling it better than that? Like, I try to just treat it like it's normal, like. And, like, everything's normal. But you used a word earlier where everyone else would have said normal. You said typical.
- [51:19]
B
Yes. And I think, yeah, we don't like the word normal because then it kind of like separates our children for, like, from the rest, which is what we don't want to do. Normal makes it seem like, you know, healthy. I said that, too. And. And that's kind of like a fine line as well. It's so hard because everything is about verbiage and how you say things, so you don't, you know, offend anyone or, you know, even, like, now, like, the word disability, they're trying to, like, kind of move away from that and be, like, differently abled, you know, so it's just. There's a lot of verbiage changing. But, yes, we definitely prefer typical. So, like, you know, your typical child versus, you know, this child is normal. You know what I mean?
- [52:02]
A
Yeah. I just thought. I was really struck. I didn't mention at the time, but I thought. I loved the way you said typical there instead of normal, and I didn't even know why. Exactly. I'm starting to wrap my mind around it more and more as you're speaking, and I would even tell you that I'm sure there are people listening to this who have already shut it off because they think I'm being insensitive or like, I'm joking through it. But I really believe this is how you would prefer to talk to somebody about this.
- [52:23]
B
Yes. Yeah, right. Exactly. Yeah. Because, you know, and to answer your question of, like, what would I prefer someone to say when I tell someone that my child has down syndrome? What do you say? You know, it's hard. Like, I'm trying to put myself in their shoes. What do you say to that other than, you know, so, sorry. Like, okay, like, you know.
- [52:40]
A
Well, it's a good point. Right? Like, there's. What are the other responses? Like, you know, I say, mazel tov. Like, it's not like, you know, I'm like, congratulations, awesome. Like, none of these are reasonable responses.
- [52:52]
B
Right.
- [52:52]
A
And I'm sorry, it's not either. And, like, so I think where my brain is, is the reasonable response is to Treat you like a person and go, oh, what's that? Like, yes.
- [53:04]
B
Yeah. Like, how old are they? You know, like.
- [53:06]
A
Yeah.
- [53:07]
B
What's their name? You know? Yeah.
- [53:08]
A
Do they have a favorite movie? Like.
- [53:10]
B
Yeah.
- [53:11]
A
Move past it or at least address it head on.
- [53:16]
B
Right, right.
- [53:17]
A
And not talk around it and act all weird and, you know, whatever else probably happened. I'm sure you've had some run ins with people.
- [53:24]
B
Yes, yeah, yeah, yeah. I've had that and some of your podcast episodes. I've heard people struggles with, you know, educators for type 1 diabetes and medical professionals, and it's the same way with down syndrome, you know, So, I mean, I've definitely had my fair share of encounters with that. Yeah.
- [53:40]
A
Has anyone told you that if someone was going to get down syndrome effect, I'm glad it was Kay, because you're strong person. You can take care of this. Has anybody hit you with that one yet?
- [53:50]
B
Yes. Yeah, we always, like, there's even, like just a running thing of like, you know, you were meant to be a special needs mom and it's like, no, you know, I. Because I had to. Yeah, like, you would too. You do the same thing. Like, there was no. It wasn't the chosen one, you know, like, I just. It just happened.
- [54:09]
A
God knew, Jessica, that you could handle it. So he gave you a daughter with down syndrome. Well, awesome.
- [54:14]
B
Literally. Yeah. All the time. All the time. I'm like, no, no, I don't think that's right. Yeah, I don't think so.
- [54:22]
A
Arden tells me that that sentiment, she doesn't really get jazzed up about a lot about diabetes, but that sentiment she finds infuriating.
- [54:31]
B
Yes.
- [54:32]
A
Yeah.
- [54:32]
B
It's like, you know, it's tough because you're. It's like they're saying, I couldn't do what you do. And sometimes I do hear that, too. It's like you could and you would. You'd figure it out, you know, just like I did. Yeah, yeah.
- [54:45]
A
Because five minutes before this happened to me, I don't think I could do it either, so.
- [54:48]
B
Exactly.
- [54:49]
A
By the way, I don't know if I'm doing it, but I'm staying alive.
- [54:52]
B
Yeah, yeah, yeah.
- [54:53]
A
It's all language and people getting uncomfortable and then not knowing what to say next. And I think I'm going to give myself a little credit here, which I didn't mean to do, but it's going to happen anyway. Again, the way I'm handling this conversation, I think most people find this uncomfortable. I think this is the right thing to do.
- [55:09]
B
No, I think so, too. You know, and. Because sometimes, you know, like I said, when you go into a conversation and you, you know, say that your child has down syndrome and, you know, all these other complications are like, wow. Like, they're either like, wow, I'm so sorry, or just wow, and they're speechless and they don't know, you know, how to handle it. I'd rather be open and candid and have, like, a fun, you know, conversation and, you know, even joke about it rather than it just be serious all the time.
- [55:36]
A
Don't treat me abnormally. Yes. Also, let me be clear. If I wasn't interviewing you for a podcast, I wouldn't have asked you if you considered terminating your pregnancy. It's not like I would do that. Like, if we bumped into each the 7 11, I wouldn't be like, hey, that's interesting. Let me ask you a question. Hey, Kay, don't listen to this part.
- [55:53]
B
Right, right.
- [55:55]
A
Yeah. This is a very specific scenario, by the way, because I've asked people that in the past and some people say, yeah, I really did consider it, and I think that's a brave thing to say out loud.
- [56:04]
B
It is. I. Yeah, I agree. Like I said, I'm. I'm totally pro choice, you know, and it is a very brave thing for people to be like, you know, I did consider it, like, weighed all the options, and that was a consideration. And I know people who have, like, a birth diagnosis. I'm sure they get asked that, too, like, oh, would you have terminated if you found out earlier? You know, I mean, it's. It's a question, you know, that gets asked.
- [56:26]
A
So let me ask you. I wondered this twice now. Like, when you say I'm pro choice, you're saying it more like it's a moral or religious or some sort of, like, it's just how you. Like, you wouldn't have terminated any pregnancy for any reason. Is that right?
- [56:38]
B
Right, right, right. Yeah, yeah. Unless they were like, oh, you know, it would. It would just vary. They'd have to be like, okay, well, I don't think that this child would survive, like, an hour after birth. It would just be a very different circumstance for me. But it doesn't mean that, you know, I don't want everybody else to have the choice that, you know. No, no, you know, yeah, yeah, let's.
- [56:58]
A
Just make an outlandish, like, statement to see, like, they run that test and, like, hey, your baby's actually a tree. There's a squirrel living inside of it, its arms coming out of its foot. Would you like to Terminate the pregnancy. What would you have said? Would you have said no? Okay. You didn't have to answer. I just wanted to understand where you were coming from. Okay.
- [57:14]
B
Yeah. Yeah.
- [57:15]
A
You know, when Kelly got pregnant with Cole, we didn't do it on purpose. We were married for a number of years, but we didn't get pregnant on purpose. We didn't get pregnant on purpose. That's the most modern thing I'll ever say in my life. I didn't knock my wife up on purpose. That's what I should have said. And we got into this conversation pretty quickly because I said, I. Gosh, I hope you know, I don't know. We were talking about the health of the baby. It's what you do in the beginning, right. And I said, if there's something really wrong, you know, will you have an abortion? She's like, no, not at all. Like, my wife would never. And I was like, oh, right. Oh, I never thought of this before, because I would. I. If you put it up to me, I'd do it.
- [57:51]
B
Yeah.
- [57:52]
A
Like, you know, I mean, like, it's just worth talking about, because I think it's a hard thing. People don't discuss it. And this is a good opportunity to say out loud, like, I don't care what you. How you feel about it. I don't care what you would do. I'm saying you should talk about it, because it's a thought everyone's got to go through who finds themselves in that situation. And it's a disservice to people when we don't talk about stuff, because then they feel alone and they stay quiet, and they don't talk to anybody, and then they don't have anybody to bounce stuff off of. And some of this difficult stuff needs to be hashed out without you getting mad at somebody. Like, you know, I agree.
- [58:26]
B
Yeah, absolutely.
- [58:27]
A
That's all. I'm not running around like, you know. You know, I wouldn't be like, oh, no, I. I heard the baby's gonna have brown hair. Let's get rid of it. Like, I'm not, like, I' saying that. I also want to say that, generally speaking, like, I don't. I'm not looking for babies to be aborted. You know what I mean? Like, I'm not. That's not a thing. I'm like, you know.
- [58:46]
B
Yeah, exactly. Yeah. Yeah.
- [58:47]
A
Okay. I just want to make sure I understand this. Later, somebody will tell me I shouldn't have talked about any of this, but I don't know what to tell you about that. Part I had a person tell me yesterday. I said something on an episode that I recorded yesterday that you guys probably just heard. And, you know, the person was like, thanking me for talking about it. And. And I really. I really tried to hear what she was saying. Like, she's like, this is the thing. It's not nearly as important as this thing we're talking about right now, but, like, this is a thing no one would say out loud. And she's like, you just, like, said that, admitted to it, then talked us through it. And she's like, I think that's really valuable for people. And I. And I think this too. Like, you know, somebody. A lot of ladies listening to this are going to have get pregnant, and some of them are gonna be in some cold, sterile room where somebody they don't know turns to them and says, hey, I'm so sorry to tell you this. And then they're gonna say something that nobody wants to hear. And you should know that, like, even if you think about it for five seconds, it doesn't make you a bad person. Like, you know what I mean? Like, I mean, you're going through the checklist of trying to figure something out at that point. Yeah.
- [59:54]
B
Yeah, exactly. Yeah. Okay. Okay, good. Wow.
- [59:56]
A
I'm making a lot of sense today. That's awesome.
- [59:58]
B
You are? Yes.
- [59:59]
A
I don't know why. I might have had some caffeine or something. I'm all, like, focused. We didn't talk about the service dog.
- [60:04]
B
Yeah. So honestly, through social media, I follow a lot of families with younger kiddos who have service dogs who are type one. And I just started looking into it. I did research on. I looked up different, you know, service animal, diabetic, their dog companies and filled out applications and just kind of started the process. I wasn't even sure how long it was going to take, like, how funding would work, you know, because they're so expensive. So you got to think about all of that in the timeline. And I just thought it would help because, you know, K can't tell me when she's feeling, you know, low or if she's feeling sick from a high blood sugar. And she has a Dexcom G7 and she wears an Omnipod 5. And those, you know, are definitely helpful. I know everybody's like, well, you have technology. Why do you need a service doctor dog? And to be honest, I mean, we've had this dog for about two months, and she's alerted me like, 30 minutes before a high or low, and is very persistent. Yeah. So, I mean, it Just helps me in that aspect, too. Especially just because she can't tell me how she's feeling. And I don't know, like, our previous conversation, I don't know when or if she will ever get to that point. So it's. It's been really helpful.
- [61:18]
A
How did you end up paying for it?
- [61:19]
B
We started a GoFundMe, which I've never done before, and I was kind of, like, hesitant. You know, how some people feel out GoFundMes and all that. So we started that. I posted on my Facebook and shared it with my family and friends and just kind of put information out there, like, why diabetic alert dog? And we have two other dogs. Why can't we train them? Just, like, questions I feel like people would ask. And so I would just post as much knowledge as I could. And actually, we got really lucky. One of the local news stations, an anchor had commented on the GoFundMe and said, like, hey, I'd love to talk to you about your story. And my mom and I looked, and I'm like, is that legit? So we looked on Facebook, we looked on their website. They're like, yeah, she's real. She's real. We're like, let's message her right now. Yeah, they actually did. Let me see, three stories on us. And one of them, they have what's called the surprise squad. And so they come out and donate money to you. And so they donated, I think it was five grand towards our GoFundMe as well. So, yeah, I mean, just honestly, the exposure and I think too, having people see the stories, even in our own personal life, really was like a pulled at your heartstrings kind of moment. So that helped out a lot. My dad's in the union, so his union actually created these little metal pins in the shape of, like, a dog that you can wear on, like, your shirts and hats. And they sold a bunch of those and donated money to us. Through that. We did a few other fundraisers. So, yeah, we were just doing whatever we could, but I think the exposure helped. Yes.
- [63:01]
A
You know, you just gave me an idea because, you know, the way the world works doesn't make any sense. I'm going to start a GoFundMe for me for a yacht. And, like, I was just thinking, like, you ever notice no one does that. What they don't say, by the way, they shouldn't. That's not my point. But, like, nobody ever does anything outlandish and ridiculous. And it's like, I want to buy a Lamborghini I have plenty of money. I can pay my bills, but I can't afford a Lamborghini. But if you all throw in a dollar, I'll be able to get one. Like, I, I can't believe that the jackasses on the Internet haven't done something like that yet. Or maybe they have and I don't know about it.
- [63:32]
B
Yeah, we just haven't come across it.
- [63:34]
A
Yeah, no, I'm glad that worked out for you. That's really awesome. What kind of dog is it? It.
- [63:39]
B
She is a great Pyrenees and standard poodle mix.
- [63:43]
A
Nice. Yeah, awesome. Hypoallergenic or no?
- [63:46]
B
Yes, she is. Yep, definitely. Yeah. Both our other dogs are poodle mixes, so no shedding here, which is good.
- [63:52]
A
Oh, very nice. Yeah, yeah, yeah. I, I'm, I, I just, I just brushed out that little dog we have the other day and I was like, oh, yes, even the short haired dogs, you're like, oh, where's all this coming from? You know? Cool, cool. Anything we haven't talked about that we should have? Anything I missed or that you'd like to bring up?
- [64:09]
B
I, I don't, I don't think so. I mean, you know, just in general. Like, I, I've listened to a lot of the podcasts and I, I know a lot of families don't find out about their kids type one until they're in, you know, dka, and that's a lot of times because the medical professionals, they don't test for that. You know, we've talked about that a lot, like on all of your, a lot of your podcasts, you know, have talked about that. And you know, I'm, I'm just super thankful that her pediatrician's office was like, sure, we'll throw you a bone, we'll test it, you know, like, because otherwise had I not asked that they, they probably, you know, they wouldn't have, there's no way, you know, so, I mean, when she was diagnosed, her A1C was like 9.6, which, I mean, is high, but I, I just.
- [64:50]
A
Pretty early still.
- [64:50]
B
I. Right, yeah, yeah.
- [64:53]
A
I mean, I just, with her situation, it's possible you would not have noticed if you didn't notice and maybe something dire could have happened.
- [65:00]
B
Yeah, yeah, yeah, exactly. Yeah. Because again, I mean, she can't tell me if her stomach hurts or how she's fully feeling. So I was just kind of going off of her mood and other symptoms and the, of course, you know, there was the excessive drinking as well. She's great about drinking water in general, but she was just demanding water. Like, she had not had water for days. So that was, you know, with all of that, I mean, I'm lucky, because family history, even though I didn't grow up around them, and having a type 1 diabetic dog is different, but I owe it to him a little bit, too. He has since passed, but he was a diabetic about the last year before he passed away. And I, you know, he always wore diapers because he peed a lot and drank a lot of water. And with those two things, I was like, you know, there's something going on.
- [65:44]
A
Well, that's a. That's an interesting way to come to the idea.
- [65:48]
B
I know, I know. Yeah.
- [65:50]
A
Listen, I'm glad. You should be impressed with yourself that you figured it out that quickly. That gets.
- [65:54]
B
Yeah, yeah.
- [65:55]
A
Really?
- [65:56]
B
Yes.
- [65:56]
A
The podcast, do you think of it more as community management? Have you used it for a mix of things? Like, how does it. How does it work best for you?
- [66:05]
B
Yeah, I, you know, I've used it for a mix of things. To be honest. I do like it a lot for the community and hearing other people's stories and knowing, you know, that some of the feelings I have or some of the things that I go through, they also experience as well, you know, So I use it for both. Yeah, I like the specialty episodes about dosing for certain things, and then I just like hearing people's stories, too.
- [66:28]
A
Cool. Oh, I'm glad. How'd you find it?
- [66:30]
B
Facebook. I was searching on Facebook, and I'm trying to think of how exactly I came across it. I. I don't know if I was in, like, another smaller group, and then somebody had posted about it, which is probably most likely what happened. But then I came across the Juice Box podcast Facebook group, and I started listening to the podcast, and, you know, I mean, it's been an extreme help, you know, mentally, and just dosing for certain things as well. Just, you know, plethora of knowledge. For sure.
- [67:00]
A
I'm glad to know that. I'm happy it helped you. And thank you to all the people who run around sharing it all over the place too. That's.
- [67:06]
B
Yes, I always see it shared. And I do the same thing. Anybody's like, hey, my child was newly diagnosed. Here's the link. Check this out.
- [67:14]
A
Like, I got tagged in something today, and I tried to thank the person. I was like. I. And I realized, like, oh, this is a private group. I'm not even. And, oh, yeah, I can't respond to this. You know, And I thought, oh, I wonder how often that's happening in places I don't realize.
- [67:28]
B
Yeah, a lot. It seems like a lot. Yeah, I'm sure.
- [67:31]
A
I hope it's really nice. I thank everybody for sharing. Look at it. Found Jessica. And it's been valuable for her and. And hopefully for you guys, too. Jessica, I have a call in 45 minutes where I have to make sense and be professional. And I haven't eaten yet, so I'm gonna go and eat something and then come back. And I don't even know what these people want from me. Actually. This is gonna be. Oh, I'm looking. This is gonna be one of these. I don't know how many of you have jobs where people pretend to be professional, like, where everybody's sitting up straight and, you know, they're all like a bunch of idiots that, like, don't want to act the way they're acting, but we're all acting like. And then I can't keep that going for more than a couple of minutes. So I give up on it pretty quickly. And then you can see which ones on the call are like, oh, good, we're not gonna pretend. And then there's always somebody who just set it up really straight. They're like, I'm not breaking character. I'm going to keep saying things like, you know, out of the thinking, out of the box and stuff like that.
- [68:27]
B
Right, Exactly.
- [68:29]
A
It's very funny. Anyway, I got to go do that, so thank you so much for doing this and for being so good natured and I love your attitude. I wish you a ton of success. I think you're on a good path. It's very possible that the sky's the limit for the you two. I think you guys may be a little, little unstoppable force over there, the two of you. You.
- [68:45]
B
Yeah. Well, thank you. I appreciate you having me on. It's. I, you know, it was fun. I like talking to you.
- [68:50]
A
It was a pleasure. I'm glad you had a good time. Hold on one second for me. Thanks.
- [68:53]
B
Okay.
- [69:01]
A
Arden has been getting her diabetes supplies from US MED for three years. You can as well usmed.com juicebox or call 888-15-14 My thanks to USMED for sponsoring this episode and for being longtime sponsors of the Juicebox podcast. There are links in the show notes and links@juiceboxpodcast.com to USMED and all of the sponsors. The podcast episode that you just enjoyed was sponsored by Eversense CGM. They make the Eversense 365. That thing lasts a whole year one insertion every year. Come on. You probably feel like I'm messing with you, but I'm not. Eversensecgm.com juicebox head now to tandomdiabetes.com juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're going to find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system them. Thank you so much for listening. I'll be back very soon with another episode of the Juice Box Podcast. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple Podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple Podcast and set it up so that it downloads all new episodes, I'll be your best friend friend. And if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card? If you're living with type 1 diabetes, the after Dark collection from the Juice Box Podcast is the only place to hear the stories that no one else talks about. From drugs to depression, self harm, trauma, addiction, and so much more. Go to juiceboxpodcast.com up in the menu and click on After Dark. There you'll see a full list of all of the After Dark episodes. Hey, what's up everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at Wrongway Recording doing his magic to these files. So if you want him to do his magic to you, wrongwayrecording. Com. You got a podcast, you want somebody to edit it, you want Rob.