Caffeinated Caregivers: Alyssa Nutile and Erica Stearns - Part 1

In this episode of Raising Disabled, we talked to the girls of Caffeinated Caregivers, Alyssa Nutile and Erica Stearns.  

In part 1 of this 2 part episode, we talk about Alyssa and Erica's disabilities that they themselves have and they both share about their own children's disabilities and unique struggles.

They are a MUST FOLLOW on Instagram at @caffeinated_caregivers because they are the queens of hilarious disability parenting memes. 

In part 2 of this episode, we are going to continue our conversation and talk about all four of our experiences with requesting a hospital transfer while inpatient and the highs and lows that come with being transferred.  We also share how we advocated for ourselves and why you need to know your rights as a parent or patient. 

Please subscribe, leave a review, and follow us on social media to know about upcoming episodes and to participate in this podcast.

Instagram - @raisingdisabledpodcast
Facebook - Raising Disabled Podcast

Transcript

Copy

Deonna: [00:00:00] Hey, y'all. Welcome to Raising Disabled. Today we're really excited because we have two girlies with us today. We have Alyssa Neutile and Erica Stearns, and they are both parts of Caffeinated Caregivers, which we're gonna get into what that is here in a little bit. But we're so glad you guys are both with us and took time to talk to us today.

Today, we wanna get started first with asking you guys just a little fun icebreaker question, and Alyssa, we'll go to you first. But what's a small win from this week that has felt really big to you? 

Alyssa: Well, I broke my foot three weeks ago- Oh, no ... just walking in my house. I didn't do anything fun. It's just, it's a long story. So anyway, I've been walking around with a boot for the last three weeks, and this week we got to the point where I can carry Gemma, my daughter, around again, 'cause she's [00:01:00] 55 pounds. She's pretty big. Yeah. And the first couple weeks, the doctor was like, "Don't lift anything or do anything that you'd have to use your foot to stabilize for." And you're like, " that's my-" Mm-hmm. Mm-hmm ... so that's my whole life, right? Yeah.

So fortunately, Sam, he, my husband, is a college professor, so he's out of school right now, and he had a little break in between those two weeks, so he could pick up a lot, and we have a daytime nurse who was able to help. But this week, I was able to carry her up and down stairs and- oh, good around a little more. So that was a b- that was a big deal for our house. 

Deonna: Yeah. That is so huge. I mean, when you can't carry your kid... , i've had my back hurting or something like that, and people don't realize if we can't pick up our kid, they don't get from point A to point B. Right. 

Alyssa: 100%. Yeah. Right. They just don't- yeah ... move if- yeah, so- ... you can't do it for them I, I had had-

Deonna: It's a big deal ... 

Rhandyl: i'd had a s- a surgery that I was, , on six-week lifting restrictions, and I mean, thankfully, we had a lot of caregiving help at the time. We weren't low on nursing staff. But , I was like, "That's, like, all I [00:02:00] do. I mean, all day." So yeah, that is a big win, whether it seems small. It's big for us. 

Erica: I also have to imagine- Okay, Erica, you're up ... it probably put into perspective how much you actually are lifting and carrying our children. When you're forced not to, it kind of makes you zoom out and be like, "Wow, this is so much of my life and caregiving experience." It's really interesting. 

Deonna: Yes. Yeah Well, even getting hurt, like I consciously... I don't know if y'all do this, but if someone's doing something kind of remotely dangerous, I think, "I can't get hurt." I don't have that luxury, and then we do get hurt or we do have surgery. I mean, you can't prevent from getting hurt. Yeah. But yeah, I do think about something before I jump off something or, you know- ... 'cause I'm thinking, "I can't get hurt." Mm-hmm. So.

Alyssa: I- Yeah ... I really- But that's part of what makes the mundane injuries so much more frustrating too, 'cause it's like I wasn't even [00:03:00] doing anything. 

Erica: I'm so safe.

Deonna: Nothing cool. And still... Yeah. 

Erica: I'm so risk adverse, and yet it was the dang thing that I stubbed my toe on that causes me to now- ... not be able to care for my kid for six weeks or something, so. 

Deonna: Exactly. Exactly. 

Erica: Oh, man. 

Deonna: So Erica, what is a small win that felt big to you this week? 

Erica: So for us it is we recently learned that we have access nearby, we live in a rural area, so we recently learned that there's a aquatic therapy pool that our kids can attend. Oh. And so, this many years into caregiving, it's just really exciting to have one more option for them. And so this week we bought- Yeah ... bathing suits. We got the swim diapers ready, and it just kind of- it feels like it unlocking a new parenting and caregiving adventure for us, [00:04:00] so that's been exciting. 

Rhandyl: Ooh, that's exciting. 

Deonna: Aw. Yeah. That is- I love that ... that is really exciting. I love that. 

Rhandyl: Yeah. Speaking of that, okay, so we have a pool at our house, and my daughter's physical therapist was like, "Hey, c- do you think we can do pool therapy sometimes this summer?" And I'm like, "Well, of course, but I don't really know how functional it's gonna be." I mean, she gets in the pool all the time with us, and we, it... But she has a trach. So I mean- Mm-hmm ... we're constantly, we just, we, she, we have a life jacket on her, and sh- we hold her, and she loves to spin around and stuff.

But I was like, "Yeah, sure," she would love it. But I was just like, "How functional is this gonna be?" And then she sent me a link to this floaty. It's like an aqua therapy. Of course, it's medical. It's outrageously expensive for a floaty. But it's like the perfect floaty, and I've tried to find a dupe or something. And I'm like, "I guess I'm gonna..." I mean, . It's just so frustrating how everything that's like- Yeah ... just because it's called CP floaty, they can put this price tag on it. Yep ... but , we'll just spend the money It'll give her a little more independence.

I think she would be safe to just float in it independently instead of having to [00:05:00] be held, which I think she'll enjoy, 'cause when she sees brother jumping and she wants to just put her head in and go- ... and we're like, "Dude you're gonna flood your lungs if you do that." Please don't. But that's gonna be so fun. I'm excited for you guys for that. Ooh. 

Deonna: We bought Allie a crazy pool floaty a couple years ago, because I was just convinced that she was missing out on the pool, and this was integral to her childhood. And so we bought this four or $500 floaty that was, like, a medical, one. And it does work really great, but she was so anxious every time we got her in the water that I was like, "Okay, we're done."

But ... We were like, "We tried it, and that's-" Mm-hmm ... all we could do. Yeah.

Erica: We've tried outdoor pools, and I think for my kids, temperature regulation is a challenge for them, so getting into a cold pool was- Uh-huh too much for their nervous system. And so that- mm-hmm ... and then also the sun and just, ... there's a lot of stimulation that I [00:06:00] think, ... They could not relax. And I fully anticipate this to be somewhat stimulating, too, but I think it being a warm pool may help with that- Mm-hmm ... other kind of physiological piece of, keeping their temperature stabilized at least, so.

Rhandyl: Yeah. 

I'm hopeful. We'll see. More controlled environment. Oh, yeah.

Erica: It might be a flop. 

Deonna: sounds like it's gonna be great. I mean, with ours, we were trying to put her in this public pool with all these- ... other kids cannonballing right next to her. Ooh, gosh. And I thought that the parents would read the room and be like, maybe we should leave. This kid's trying..." No. They just... They didn't care. No. So yeah. 

Rhandyl: It's... Yeah. You don't know until you try, right? 

Deonna: Yeah, I think it'll be good for y'all. I'm excited for you. 

Rhandyl: Okay. Before we get into it, because you guys are the Caffeinated Caregivers, and I know I've listened to some of your episodes, and you'll always start out with what you've had to drink. I'm currently drinking my fourth cup of coffee. So just h- what kind of caffeine have you drank today or are you [00:07:00] drinking? 

Alyssa: I did also spot your Ember mug over there, and I have- Oh, 

Rhandyl: dang. I was gonna comment. It's the best. Right? 

Alyssa: I have the house one, and I also- Okay ... have a travel mug that you can charge and heats your hof- coffee.

Rhandyl: Yes, I've seen those. Oh. Yeah, I- it's a game changer.

Deonna: I need to get that for my husband. You 

Alyssa: don't have to remind me.

Erica: What are you guys talking about? Those were my Valentine's Day 

Alyssa: Oh, the mug that Rhandyl has 

Rhandyl: So it's a chargeable mug. It's ... I have two of them, and I rotate them out, and it keeps your coffee warm. Nice. That way you don't have to keep reheating your coffee. You don't have to microwave it. 'Cause as you all know we can't just sit and relax and drink a cup of coffee- So- ... till it's not cold. So. 

Erica: So, Med- Yeah. Sam? Alyssa, are you admitting on air that you do in fact drink warm coffee? You do not stick solely to iced coffee? 'Cause this is a revelation for me. 

Alyssa: Well, to be 100% honest, it depends on whether or not I have access to cold coffee on any given day, right? So if I am out of cold brew and I didn't have time to make it the night before, then I make hot coffee. [00:08:00] Yeah. So I do sometimes drink hot coffee. , I've been in a cold coffee phase for the last three years though. But during the pandemic, those Ember mugs were, like, two years in a row my Valentine's Day presents, and it was- Nice ... a game changer. But today it's ... I'm a time zone ahead of you guys. Not that that- Yeah ... matters that much really, but I'm drinking kombucha, which is also caffeinated. Oh, yeah. But it's, a step down from the coffee. So that's where I am.

Erica, what are you drinking? Do you have anything today,

Erica: I did have my, basic Folgers drip with my caramel and vanilla creamer. But I'm onto water 

Rhandyl: Nice I need to get onto water. It's... I d- I'm... Yeah, drink t- way too much since we're- This is where- I'm so boring ... 

Deonna: Deonna can't drink caffeine. I, yeah, I had to quit caffeine, and so I quit caffeine about two months before my daughter's injury, which is funny. So I'm like, I don't know how [00:09:00] I survive without caffeine. I don't know how I do my life, but- Honestly, that's what- ... I drink hot water- ... flakes ... which I feel like everyone thinks is so gross. Yeah. I drink- You're not weird ... hot water all day, but I'm always standing there over by the microwave. Like, all my nurses make fun of me 'cause I'm over there all day heating up herbal teas and hot water. They're like, "You are so weird." But- 

Alyssa: Well, you could use one of those mugs too, then. You don't have to heat up your water. I, 

Deonna: yeah. 

Alyssa: You just carry your hot water- That's right ... around with you. 

Deonna: I know. I'm, like, considering it now. You're... Yeah. 

Rhandyl: Okay. I love it. , So let's get into it. Alyssa do you wanna kinda tell us about your story, your kid's story where you live, anything you would like to fill us in on?

Alyssa: Oh, yeah. Okay. So the short version for my family and where we live, we are transplants to Erie, Pennsylvania. Nobody in my family grew up here, which is unusual for the area, I should note. Mm-hmm ... most people [00:10:00] that I meet, like all my neighbors and friends and stuff around here they live here and also four generations of their family live here. So just- Wow ... fun fact. And it is right on the coast of Lake Erie. You can see the lake from my house. It's really beautiful this time of year, and it's a lot of snow and gray for November through April. ... But I think we're here permanently now. We're- Okay ... we were talking the other day, like we're lake people. This is it now. 

We moved here because, as I mentioned, my husband is a college professor, and there are only so many openings for colleges around the country. So- Mm-hmm ... right after he graduated, we moved here in 2017, and I have a 10-year-old, son named Harry, and then Gemma, who is my disabled daughter, who just turned seven.

And this is relevant, the moving here, because where we lived immediately before Erie, Pennsylvania we lived in Southern Illinois, near Carbondale, Illinois, for four and a half years, which is where [00:11:00] Erica lives, and we never met in person the whole time that we lived there. So. 

Deonna: That's so weird. Yeah. 

Rhandyl: Yeah, we laugh because I am pretty sure Deonna and I lived in the same town that we're in now but years ago, and we were both at different universities- Yeah and we never knew each other. 

Deonna: Never saw each other. 

Rhandyl: Yeah. And then it all comes full circle, yeah.

Erica: Yes, it does. 

Alyssa: For sure. Well, let's see. I guess my story with disability, thinking about it and talking about it probably started with my daughter because, like, when I was a kid I never even heard that word. I didn't know that was- right ... a thing really that people- Mm-hmm ... use to describe themselves or their lives, right? So I was in high school in the mid 2000s. And in seventh grade I had an orthopedic hip disease. If anybody wants to look it up, it's called SCFE, - slipped capital femoral epiphysis. And you can go look it up, and you can look up the treatment plan, and then you can look up all the possible complications of it, and then you can just [00:12:00] check the list 'cause I had all of them.

Oh, duh ... so I had surgery when I was in seventh grade. The short version is my growth plate broke and my hip slipped out of socket, and the treatment for that is they just put a screw in it to keep it stable for a while, which is usually fine for most people. In my case the whole bone started to disintegrate, so by the time I was 18- Oh, man ... I had a total hip replacement.

So between seventh grade and my freshman year of college, I walked with a very pronounced limp. Like- oh, wow ... at the... and at the time it's like you see people with injuries and stuff, so people would ask me periodically, like people who knew me even, like if it was a good day or bad day, would be like, "Oh, you're limping a lot. Did something happen?" And I was like, "No, it's just- ... how it is. That's just how I walk." Yeah. "It's what happens." It didn't occur to me that was a thing, even though it severely limited the activities that I could do and the, things that I could do. Like- Yeah, 

Rhandyl: I was gonna say, those years, junior high school- Yeah are like, those are, like, very- 

Alyssa: Yeah, it's a bad time ... yeah ... to have really obvious, like- [00:13:00] Yeah ... differences. 

Deonna: Very bad time. Oh, gosh. 

Alyssa: Yeah. Yeah. And you get nicknames, and people mention it, and it's, you know- ... it is what it is. And even, we would go to the zoo for an activity or whatever, and it... i'd be like, "Okay, but, I can walk a mile or two today, and I'm gonna need breaks and-" Sure. "... all those types of things." Mm-hmm. The stuff that comes along with it. But it never occurred to me. I didn't really have the language to describe it that way.

And then when I was a freshman in college, I got my hip replaced, and things were very different after that. I wasn't having chronic pain every day, and my legs were the same length roughly, so I could learn to like, walk, "normally," quote, unquote, like after that. Yeah. I did get a metal on metal hip replacement, which was, like, the best bet at the time, but also if you go look up those now, they don't do them anymore 'cause they have- a really high failure rate. So fingers crossed- Oh, gosh ... this one keeps lasting for a while. Yep. But yeah. It's one of those, It's kind of surreal to think about now 'cause it's like day to day it doesn't feel that different, I think, than most people. It gets stiff, and I have things that come up- you know, but [00:14:00] it's so different than what I grew up with, but it's also that thing that's lingering that like this will be an issue again at some point. I just- Yeah. Mm-hmm ... I don't know when exactly. Yeah. 

Which is also a thing I don't think about a lot because as we discussed today, like I don't really have the time to sit around and think about like, when is this gonna be an issue for mobility for me again? Because right now it can't be 'cause I have to take care of Gemma. So- 

Deonna: Yeah, you don't have time for it. 

Alyssa: No. So anyway, like fast-forward about 15 years or so, we come to Gemma. And Gemma was born in March of 2019, so in 2018, she was my second child. We were going into this pregnancy with her, and I was pretty chill about it. I was pretty chill about like the first kid. Like everybody's got their nerves and whatever, but I was like, "Whatever. We did a kid before. It was fine." "He doesn't... We don't sleep for a year, but he grows out of it. They're super cute. Not a big deal." Yeah. We know how to do this."

And we show up to the very first ultrasound, [00:15:00] and I think it was at like 11 weeks. And we go to this ultrasound, and it's like taking a long time. Like they're like looking and looking- Mm-hmm ... and looking. And I'm like, I don't feel like... I mean, it's been three years, but like, I don't really remember it taking this long- Mm-hmm ... for the first one. So eventually we get to the end of it, and they're like, "Okay, go back to the office." And I should note so Harry was born in Southern Illinois, so it was a whole different team, and like now we're in- Mm-hmm ... Erie, Pennsylvania. So I was like maybe they do stuff differently here. I don't really know.

And we go back to this little office, and somebody comes in and- I don't remember the exact language that she used anymore. I probably have it written down somewhere, 'cause I, I tried to document a lot of these things because we all forget them, right? The trauma has wiped a ton of memories- Oh, yeah ... totally of this stuff. Oh, big time. Yeah. So I didn't n- know that I was preparing for that at the time, but I did try and write a lot of stuff down just so I could explain it to people later. And but any- the short version was basically like, "Your baby's brain is not developing [00:16:00] properly." And I was like- That's wild ... "What does that mean?" Wild. 

Rhandyl: They can tell that at 11 weeks, too. 

Alyssa: Yeah. She had cysts in places- Oh that they were not supposed to be early. So yeah, I could spend an entire podcast, which I won't, talking about our pregnancy. Yeah. The wild pregnancy that we had from there on out. But the short version was just early on her brain wasn't developing. They couldn't tell us why really. We did everything but an amniocentesis. Well, and we couldn't do an MRI also. They couldn't get really good images of her brain because I have a- all metal hip replacement. Yeah. Oh, right. Exactly. Yeah you can't- Yeah, don't do that ... I can't do MRIs. Yeah.

So anyway, we prepared for a really complex birth. She had a fairly straightforward birth. It was just a C-section. And that's when the diagnostic part of everything started. Mm-hmm. Right. And that is also a wild ride that I do not have to get into today. But suffice to say- [00:17:00] Yeah. ... she had a few misdiagnoses before we got to the right one. She had- ... several surgeries that she did not need on her brain. Oh my gosh ... 

yeah, ... they initially thought that she had hydrocephalus, which was a really bad... Looking back, they really didn't have a lot of reasons to think that's what she had. But anyway, they were like, "Well, in case she has it, we have to give her a brain shunt." Mm-hmm ... so she got that at eight days old. It was, like, poorly done from the beginning. And then she- And that's a big surgery ... needed two revisions. That's a big surgery on an eight-day-old baby- Yeah ... who's already having other issues. She ended up having two revisions, one more at that hospital and then one more at the hospital that we ended up transferring to. Man. 

Kind of from the beginning we had doctors, telling us- a lot of weird things., Reading between the lines, I think there were a segment of doctors at our hospital that suspected she has what her final diagnosis was, which is pyruvate dehydrogenase complex deficiency, so PDCD.[00:18:00] 

And there was a doctor and a team at a hospital literally a mile away that has a team that specializes in that disease. But then there was another cohort that didn't really want us to do a hospital transfer. So it was a very big deal- Oh my ... to get her transferred from the hospital that we were at- that sounds rough that did the surgery that maybe she didn't need, to go to the other hospital. But anyway. 

Deonna: Well, they love being right. It's just so 

Alyssa: difficult. They love being right. Yeah. 

Deonna: It's your life they're playing with.

Alyssa: Yeah. We had a couple of doctors and a couple of nurses really push to help us get that transfer in, and we did. And she got her official diagnosis at the second hospital. And when we got that diagnosis, she was recovering from her third, and hopefully final forever, brain surgery. Seriously. Um, The room was, like, really dark. It had to be really quiet because she wasn't allowed any stimulation 'cause they were like- Mm-hmm ... the reason she had so many surgeries is 'cause it wouldn't heal. The- ... the way that they had done it the first time, it [00:19:00] was just like, some really big incisions, some stuff that she didn't need. Oh my gosh. It just, it was not healing. So they were like, "No stimulation. She's lightly sedated. She's gonna stay like this. You can't upset her." Mm-hmm. She's a five-week-old baby. Nobody makes her upset.

Her parents- Yeah ... on the other hand they weren't as concerned about, so they walked in and That was a whole thing too, but what I remember from that conversation is the doctor sitting there and being like, "She's really severe. This is the treatment route for these kids. We'll see if we can get her going for two years, four years, like maybe 15." That's what they told us. Oh, wow. My husband wasn't even there at the time. He was like- 

Deonna: That's a big difference. 

Alyssa: Yeah. He was, like, on the way home. But it was a big difference, but it's also like, "This kid's gonna die," right? Like, That-

Deonna:  It's still depressing no matter what. Yeah ... 

Alyssa: that's the information that we got at the time. And through this whole process I was prepared to handle basically everything up to that, right? Mm-hmm. I was like, okay, if she needs support at home, if she needs, therapies, if she needs special schooling whatever she needs we can get that for her. But I was not prepared for them to [00:20:00] tell me "Your kid's gonna die soon-ish." Mm-hmm. Yeah. Relatively. Yeah. So that was like- 

Deonna: It's a whole different conversation. 

Alyssa: Yeah. That was, like, the moment that it was like, okay, wow, our world has pretty much imploded at this point. Mm-hmm. Man. And we went home shortly after that and, like many a thing has happened since then. And we spent that first year or two probably just kind of, getting everything in order, like early intervention, getting her all the specialists. Mm-hmm. Trying to figure out the epilepsy stuff. Uh, Towards the end of it, like- Survival mode. Survival mode. Towards the end of it, we figured out that we actually qualified for nursing, and I was like, "That would've been helpful to know- Oh my god a year and a half ago." Yeah. Um- Seriously ... 

I- I'll also say that getting nursing was kind of, the marker for our life changing for the better, right? Yeah. Yeah. Because we were really just truly in survival mode. We were still just emotionally trying to get through all this stuff up until this point, and then finally we had nursing and we had a moment to breathe, which was [00:21:00] hard in its own way, but that, that was a big shift.

So she's seven now. And we are much more stable. She s- has lots of things going on, as I'm sure all of our kids do. She has lots of specialists. We're kind of at the point now where we have to have really good reasons for whether we will do any more, in- interventions for her. I'm like, "If you want- Yeah to do a surgery, you have to tell me that this is gonna make a difference six months from now." Yeah. This can't be a surgery that will hopefully stave off problems in a decade. I need to know that this will fix something- Sure ... for her life- 

Rhandyl: Quality of life ... 

Alyssa: very soon. Yeah. Big, yeah. Right, exactly. Mm-hmm. Because she's been through enough already, and she is very stable and happy right now, and so I'm like we're not-" 

Rhandyl: Don't mess up a good thing. 

Alyssa: We're not rocking the boat.

Speaker: Hey y'all, it's Deonna from Raising Disabled, and at our house, my daughter is in her Zing Stander all the time. She loves it. She loves to get in there and play video games or read or play on her computer. Zing Standers are [00:22:00] designed to offer more than just support. They pave the way for crucial early intervention therapy.

From helping develop strength and balance, joint development, to improving circulation and digestion, standing frames can be an essential part of therapy plans promoting holistic growth and development. With customizable support and positioning options, a Zing Stander can cater to any child's positioning needs.

You can learn more at zingstanders. com. she in a wheelchair, or is she verbal, or like, what 

Alyssa: from that standpoint? No. Uh, Yeah, no. No, so she's totally non-am- ambulatory. She needs help. You know, She's like, more or less total care 24/7. She doesn't have- Yeah ... a trach, so pretty much everything up to that. Like- Yeah ... we don't have a trach vent. She's got her CPAP at night. She's... Right now we're suctioning a lot because she's very allergic to all of the outside, so, like- oh, yeah she has a lot of secretions. So we still do a lot of that, but she's very good at clearing her own [00:23:00] airway

but, you know, , we have all the complications that come with her not being able to move herself around, with her- Yeah ... not being able to explain- mm-hmm ... things to us, right? She's non-speaking. She has some moderate ... she's pretty good at explaining her state of being, her emotions, like that sort of thing. Yeah. So like, her interest in learning AAC devices and stuff like that has been minimal, I will say. She's like, "You know what I want at any given time" yes. Yeah. "So you'll figure it out." 

Deonna: Why would I learn this? 

Alyssa: Right. 

Rhandyl: That sounds like my daughter. 

Alyssa: Yes. 

Rhandyl: She's fi- It's taken years for her to actually be like, okay if she can't get her point across, she'll try to u- use her AAC device. But for the most part, we can just tell by her facial expressions or her personality, or her movements- Mm-hmm or little sounds she makes, Yeah ... but yeah. It's- It makes me- 'Cause she's like, "You're supposed to read my mind." Yeah. 

Deonna: It makes me mad 'cause I mean, my daughter's verbal, but it makes me mad whenever somebody outside of our world is like, "I don't know why they just don't have one of those iPads and they could talk." I'm like, [00:24:00] "It's not that simple. It takes, I mean, hours and hours of practice, and if the kid's not interested, then what do you do?" I mean, it's- Yeah ... yeah. That's one of my pet- It's- ... peeves when people say that. I'm like, "Oh, my gosh, no." Yeah. 

Alyssa: Yeah. But, You know, she has a - , neurodegenerative disease, right? Yeah. So she has all the pieces that come with that, and she's seven now. So, she has a lot of issues with coordination. She has a lot of visual impairments and stuff, so it's not just "Get her an eye gaze device." And like- Mm-hmm ... well, she doesn't like to look at things. When she gets- Yeah ... overwhelmed, she closes her eyes. That is her- ... block out the world, right? Yeah. So I'm like, we, we- That doesn't work ... we're working around a lot of , her own limitations from her disabilities, but also her personality, and sometimes she just doesn't wanna do stuff, and- Yeah ... you know. yeah. 

Rhandyl: What is, what are some of her favorite things?

Alyssa: Oh, man, she's a huge fan of ... She likes music, like most kinds of music, but she also she really likes The Sinners soundtrack, to be honest. She is- Oh, okay ... really into the, 

Deonna: like- It's a [00:25:00] movie. That's funny. 

Alyssa: Yes, like the movie. So, she's really into the twangy, ... she likes other, she likes pop music and stuff like that too. Yeah. Anything that has a lot of sound she's into. Yeah. But the twangy - sounds, the deep voices and stuff like that- I love it ... she really likes that. Somewhat related to that, We did family movie night and we watched The Terminator. Which I don't know if that's like totally age appropriate for- eh, yeah, no my age of kids. It's great. But we did it anyway, and she was like locked in the whole time. That's awesome. So we've been testing it out with like other action movies- Mm-hmm ... 'cause she was getting a little bored of like Bluey and Cocomelon- Yeah ... and all that stuff. Yeah. She really likes action movies.

I don't- 

Rhandyl: Oh, nice. My girl. So, yeah. I'm a huge Terminator fan, man. 

Alyssa: So she's watched like a ton of stuff. She's watched like the Top Gun and like we've been- Oh, yeah ... do- like easing her in with like the, the classic like '80s and '90s movies. Sure. Mission Impossible. That's so fun. Love it. She, I guess she has a thing for Tom Cruise apparently. Yeah. Who, 

Rhandyl: who doesn't? Hey. 

Alyssa: Yeah. Yeah, and she likes to hang out with her family. She likes to just be [00:26:00] around and hear the chitchat and stuff. She hates going outside. Like we've tried every version of it, she just is not an outside girl. Yeah. But, yeah. That's-

Rhandyl: To each his own.

Deonna: Yeah funny. Yeah, she knows. Mm-hmm. Well that's so cool hearing about all of, about your experience. I mean, it's kinda funny when I, when you were telling me about, not being able to walk , or it being really like a huge struggle when you were young like that. It's funny how you don't think of yourself as having a disability. That's how I was. Like, I got diagnosed with MS in 2017, and then my daughter got hurt in 2020, and I started to think, after she got that diagnosis my symptoms started to flare up about six months later because of the stress and everything I was going through. And I just thought, for the first time it was like, "Am I disabled too?" A- and I am, I mean, I technically have that title or whatever. Yeah. 

But I don't know, I just didn't think of myself that way. I [00:27:00] just thought, "Man, I'm struggling really bad." I just would label it, I don't know, I would give it a different name, I guess. So yeah, I know what you're saying about 

Alyssa: Yeah. It's hard. It almost... It's like depending on the conversation is how you describe it, right? Like I used to be- Mm-hmm ... "oh, I, I just walk that way." Or sometimes it'd be like, "Oh I hurt it when I was a kid," and like- Mm-hmm ... it just hurts still, like- Yeah ... you, I didn't have any language to describe it at the time.

Deonna: Well, and you minimize your own problems, and then when it comes to my kid or y'all's kids, I'm like, "No, they have a serious disability. This is serious," yeah. But yeah, for myself I'm like, "Oh, I'm just in pain so bad some days I can hardly walk or move my arms or see." But, it's fine. I'm fine. Yeah that's what us girls do, I feel like.

So Erica, now we'll get into you. Do you wanna tell us a little bit about your story? 

Erica: Sure. So I am in Southern Illinois but I was born and raised in Kansas, near Kansas City. [00:28:00] So I happened to be born with a pretty rare birth defect at the time. It's called non-isolated tracheoesophageal fistula TEF is the acronym, and esophageal atresia, so EA with that. And I had this version that's called non-isolated, which just kind of means it's more complicated, of course. So what that looked like for me so I went home from the hospital choking and not breathing well. Every time my mom tried to feed me I was essentially, it was going straight to my lungs. So she returned- Ah ... to the hospital with me. Wow.

And that's when they discovered that I had this condition. And so things went pretty rapidly. They transferred me to the nearest children's hospital, which was Children's Mercy in Kansas City. That ended up being my hospital, my second home. Mm-hmm. Yeah ... and they did the emergency [00:29:00] procedure which, there were complications. My vocal cords, it's still unclear if they were paralyzed partially before or if they became paralyzed during. But it ended up resulting in the surgery not having the outcome that was intended and I ended up trach dependent and J tube dependent throughout my childhood and just trach dependent until I was about 15.

So- wow. And my mom did this as a single mom. Her primary source of support was her mom and my grandfather, and unfortunately, my grandmother was battling breast cancer and she passed away at the pretty early years of this journey. Oh my gosh ... so my mom ... Yeah. So my mom was like sandwich-

Rhandyl: And this was years ago caring me too. I mean-

Erica: Yeah, '85. I'll say it. I'm old ...

Rhandyl: I was thinking about I, well, yeah, that's our, we're all around the same age, I think. Mm-hmm. Wow, your mom 

is like- that is amazing. It's [00:30:00] a miracle that, your mom, I mean, that she took you back. There's something wrong. Like- Mm-hmm ... 'cause even then- Yeah ... and I mean, that day and age, it would've been like, I mean, she could have not known any better, and you would've just been chalked up into the SIDS situation. 

Erica: Exactly. It's crazy. . But yeah, I mean, fortunate that my grandmother was a nurse and was , able to , support and identify with my mom that something was wrong. But you know, my mom represents that generation. She was a sandwich caregiver. This predates home health nursing, so that was something that was like, starting in middle of the '80s, but it had not expanded nationally state to state.

So at a certain point- Mm-hmm ... my mom came home with a child with a trach with a lot of airway clearance devices, with a G-tube and feeding pump, and your only option was daycare. So that meant I was sick a lot, I was- Oh, [00:31:00] yeah ... in and out of the hospital. I had all the things that you don't want a kid with a trach getting and then complications from those things, of course. Yeah ... 

but like Alyssa, I think it's important to note that I also, never heard the terms disabled. I never even heard the terms medically complex. A- and all of those I can now identify as being, a part of my youth. But at the time, I think given the time period, there was also such a push for me to not be labeled as that because what that meant- Uh-huh at the time was institutionalization. It was segregation. It was, I would have to go to a special school- Yeah, right ... not my public school.

So, coming into caregiving as an adult and, having my daughter, that has really it provided me a really profound opportunity to find a community [00:32:00] that I didn't ever realize before I was a part of, and even some confidence in my own identity within that community. And maybe even some gratitude- Yeah ... regarding what my mom did and went through to, keep me in public school, to keep- Oh, yeah ... me out of the hospital, so- 

Rhandyl: That's amazing. I'm curious- Yeah ... how were you able to communicate in, in public school and- mm-hmm ... h- what did that look like for you in your childhood?

Erica: I was extremely fortunate in that by the time that I was three, I was developing sounds. So prior to the age of three- ... I don't know the technical term, but I was physiologically, structurally mute. My vocal cords were not functioning, so , I could not make a sound. I could not cry. Mm-hmm. I could not laugh. Yeah. Couldn't speak. Dang. But, I did not have a cognitive or intellectual disability, and I was definitely sponging up all the language happening around me. So when I [00:33:00] began to speak, it, you know- ... I had already my, my mom is one of seven brothers and sisters who did not filter.

So, I had a wide- ... a wide repertoire of words and phrases and language to use. And I think when you're non-speaking- You were ready to go. I... When you're non-speaking it's interesting. I can reflect in that medical professionals and families and parents, they don't interact with you the same as they do a baby or a toddler who is babbling and using cute little words- Mm-hmm, right that aren't right. They're using the right language, and they're maybe even using language that isn't always age appropriate because they forget because you're not communicating that you can still be absorbing that. So, you know- yeah ... I understood language and words and things, I think, probably sooner than a lot of three and [00:34:00] five-year-olds would have.

So I think the biggest thing was the development of my actual voice, and that being something that was very weak, very inconsistent, and something that has just kind of strengthened with time. It's funny though. The other day, my husband and I were at the grocery store together, which is something we rarely get to do together, so that was a date in our books. Yeah. But- 

Deonna: It's sad but true. 

Erica: Yeah. The cashier was like, "Oh, my gosh." You sound so sick. Are you okay? Are you getting over this thing that's been going around?" Some version of that. I've heard this my whole life that I have this- Yeah ... immediate response of being like, "Yeah, I'm fine. I'm getting over it." We're not gonna go, we're not gonna go there. No. I'm just- Yeah ... yeah, I'm sick, you know? Um- too much ... so Randy was like, we were walking out, and He was like, "That's so [00:35:00] wild. I just don't even I don't think you sound sick. I don't even think of your voice as sounding different." He said, "Did I ask you that when we first met?" And I'm like, "Everybody does. You probably did."

So it's one of those things that I think I live with every day. There's things I can't eat comfortably. There's things I have to be mindful of. I still have residual gut issues from just having had so many surgeries on my intestines. Oh, yeah ... but ag- like you, I, it wasn't until I had my daughter and then my son where I was like, "Oh, I, there's like a whole community of people like me who navigate healthcare challenges and mobility challenges and other forms of disabilities, and maybe that's me." So, mm-hmm. 

So that brings me to having our daughter,

, and

I was actually kinda older, I guess, for... they have such weird standards when it comes to maternal age. [00:36:00] But as a more mature new mom I was kinda closely monitored during my pregnancy. Maybe not intensely, but it was well monitored. Around the 20th week, our daughter's head size measured small, and they did a similar thing that they did with Alyssa where they took us to a room. The doctor came in, but he was like, "I'm not concerned. She's just sitting so low in your pelvis, and these ultrasounds, they're not always accurate. I'm not worried about this at all. She's a long girl already." Of course- Mm-hmm ... that's when we found out she was a girl, and so, we were just kinda like, "Okay, we're not gonna worry about this."

But then some things started happening that now looking back I can say were big red flags. So, not a lot of fetal movement. The movement that I did experience- Oh ... was, was very intense and startling. A- and now I know, and I knew the moment she was born, those were seizures, [00:37:00] and she was having those in utero. 

Deonna: Oh my gosh. I never thought about that. 

Erica: Yeah., . I shared about my concerns. I did the stress tests. Every time they were like, "Well, she's just sleepy right now." And I'm like, "No, this is normal. This is the extent to which she moves."

Deonna: Yeah. Yeah. This is always. Yeah. 

Erica: So by the 32nd week, you know, this is 12 weeks later, we're having some other ultrasounds, and that was when it was determined that her head was small for size. Doctor was still like, "Could just be how far down is she is in your pelvis, but, it does look like she's measuring small for size." 20th percentile. Mm-hmm. Pretty small. And at that point- Yeah ... the conversation was, we could send you to a fetal care institute. But by the time you're even able to get in to see them, you're gonna be having this child. So- Yeah. I get that ... we're just all gonna have some faith- mm-hmm ... that things are okay and we'll s- we'll figure it out on the other [00:38:00] side."

Obviously Randy and I did not feel that way. We went home and Googled everything and learned about microcephaly. At the time, the Zika virus was flaring and I was just certain living in the southern part of the country that like- Oh, man ... that's what we had, right? Mm-hmm. A- and then, yeah, our daughter was born, and there were some pretty obvious, to me, striking symptoms. I mean, she was born with no hair at all, no eyebrows, no eyelashes. She had lesions in spots across her skin. She had some like tougher skin around her hands. Mm-hmm. It almost looked like a little shell. She didn't cry. Huh. She failed her Apgar completely. The moment they put her in my arms, she had a massive seizure, and nobody believed me. Like- Oh, golly ... everyone was like, "Oh, this is just-" normal newborn baby movements. How many times I [00:39:00] heard that in the first five days- Wow ... of her life.

So, fast-forward- That's crazy ... w- we, had an MRI done. Those images were lost. We were stuck in a hospital that we shouldn't have been in for too long. And, and- Mm-hmm ... like Alyssa, we had to do some advocacy. That was our first form of advocacy, was getting our daughter transferred out of a local hospital into- yeah ... a more prominent children's hospital. Yeah. I think that's what this, what we're gonna talk about later 'cause, yeah, this is a big deal. A- and I didn't know that was a right we had.

Rhandyl: We've all been there, all four of us.

Erica: Yeah. So- we spent many months in the NICU. We did all the genetic testing. Our daughter, come to find out she has several brain abnormalities microcephaly, lissencephaly, and- Mm-hmm ... like, all the cephaly's. All the cephaly's. She's... we tried a cocktail of different medications and, our goal was just let's get her home. Let's get some [00:40:00] seizure management.

A- and like Alyssa, we were told- Yeah ... that like, it would be really really high chance of her not outliving infancy. So- mm-hmm. Mm-hmm ... I think our first year of life was just like, "We're gonna lose our daughter." "Let's do-" Mm-hmm. "Let's get home and do as much as we can to enjoy her, celebrate her- yeah before we lose her." And I had just had a friend go through this, ironically. So, this was really fresh- ... and familiar. Ugh. 

So that being said, we did that. Margo continued to thrive. She had a lot of hospitalizations, a lot of illnesses that no one prepared us for, like how bad the first cold would be, or, Yeah aspiration pneumonia. But ultimately we ended up, like Alyssa, getting home health support, and that became a lifeline to our ability to just survive this as caregivers.

We had the surprise of [00:41:00] our life when we found out that we were pregnant yet again, and it was normal. I mean, normal pregnancy. He actually moved. Had, was measuring normal size. We did some, I wouldn't say extensive testing. We did not do amniocentesis, but we did fetal brain monitoring, MRI. Everything looked great.

And then things started to change around the 30th week, where the movements decreased. I started feeling the seizures, and I was like, "This is psychosomatic." Yeah, allie. Like- No, yeah. Oh ... this is just me being fearful. I'm- Sure ... I'm hallucinating obviously, right? This cannot happen again because we did all the testing and- Mm-hmm ... genetics said we don't have anything. So, and there, you're not- with the caveat of- 

Deonna: And there's just times you're like, "I can't do this again." I've, I, I can't even go there. 

Erica: I think for us too- That was- ... we were like, how irresponsible of us to [00:42:00] bring another child into this world who is going to suffer- Who's so... no, I know what you mean ... the way Margo has suffered. Yeah. And it was guilt. It was shame. It was- mm-hmm I mean, it was grief and sadness because we had not, I mean, we, our daughter was about a year and a half when we found out we were pregnant with our second child, so we had just kind of reached a milestone that we never thought we'd meet with her, and now we're thinking if this child's born with the same thing, we'll be burying two babies, and- 

Deonna: oh my gosh. 

Erica: It was a lot. Mm-hmm ... i'm happy to report, in a plot twist that I did not expect, , I'm happy to report that he was born with the same condition. But what surprised me the most was that having a second child with the same condition, having the knowledge that we did, having Margo who trailblazed a pathway for us, we knew what kind of meds to put him on, we knew how to care for him. Yeah. Yeah. We were in a hospital where we didn't have to advocate. We just were [00:43:00] accepted because they already knew us and our daughter and our family. 

Yeah. It was healing in a way that I- Mm-hmm ... never thought having a second child with the same rare disease would be. Like, wow. So yeah, on paper they are identical, not in personality, though. Because of our son- ... they were able to isolate the mutation, and we learned that- 

Rhandyl: Okay, I was gonna ask, was it some sort of a genetic mutation? 

Erica: Yeah. So we had a team at- Okay ... Yale that was able to isolate that, , because there were two siblings with the same exact symptoms, they were able to determine where that mutation took place. Ironically, it's on the balding gene. It's called lanosterol synthase. And there are just a couple other families that we know, so like most rare diseases, there's a spectrum. We know one family- Mm-hmm ... who within their family, like even cousins, they've had several kids with this who have passed away before adulthood, [00:44:00] and pretty severe and- Mm-hmm profound, to the degree that our children's disabilities and health issues are. But then we know other families where the only presenting symptom is baldness. Total alopecia. Oh my gosh. So,

Deonna: so how old are they now? 

Erica: So Margo is 10, and Caraticus, or Carrie we lovingly call him, he is eight. And yeah, I mean, I fell face- Wow ... first into caregiving just because I grew up in the hospital, and I grew up with my own medical complexities. They were very different- Yeah ... and I was very independent that caring for my children who are like Alyssa's daughter, non-ambulatory non-speaking. Mm-hmm. They require multiple life-sustaining machines, not trach, but having been a trach kid, sometimes I wish they had a trach because that airway clearance would be really handy. It's easier. Mm-hmm. Yeah. Yeah. 

Alyssa: Listening to them- when they are not clearing well is brutal. That is- It's- Oh one thing that I will say in [00:45:00] all of this that's a thing- I believe ... that we've been dealing with, especially for the last year and a half or so, and I'm like, "Oh, man, some days I wish we could just get in there and get all that stuff out." 

Deonna: Mm-hmm. It's so much easier- I was the kid that- ... but then there's other sides of it. ,

Erica: Yeah. So that being said, there were certain skills and familiarity and comfort that I had in a hospital setting that like, watching my husband go through this, he did not have that. And so, his stress levels, his discomfort, his fears, paranoia, it was like he was having a totally different experience, whereas I was, like, in my element 'cause I'm like I grew up in this,"

But there are still so many things- Yeah. That's crazy ... that as a caregiver I just didn't know and I wasn't prepared for. And with it being so different- Sure ... from when I was born, there are many areas that my mom didn't know how to support me because I'm in a different state. I'm navigating totally different systems than what she had access to. Mm-hmm. So that's been really interesting as well. [00:46:00] I hope that summarizes everything.

Rhandyl: Yeah, I would love to know what their- Yeah ... personalities are like and what they enjoy. 

Erica: Well, Margot used to be, , very sassy and she's got stranger danger. She's very much guarded, and f- rightfully so, because she's been through the worst of it. She she had to do all the tests, the lumbar punctures, all the intense- Ugh ... stuff she went through, and her brother didn't have to because we had so much already because of her. Yeah. So she's more reserved, she's very observant. But she's very sweet and cuddly, and when you get into her world where she's accepted you, you feel like a million dollars. You've really made it, 

Deonna: there's so many disabled kids like that. They touch- Yeah ... you or hug you, and you're like, "Yeah." 

Rhandyl: Yeah. Some of my daughter's- 'Cause the- ... nurses, it's taken like, close to a year for her to be like, "Okay." Margot is that way. Like- Yeah ... you're part of the family. Yeah. [00:47:00] It's like- Girls don't trust issues ... it's like the best trophy ever, though, when they... yeah. Yeah. If they stuck it out a year, then you're good. 

Erica: And I can't blame her for that, too. I mean, she's got every right to, be- Mm-hmm ... skeptical, and she certainly is. And she's got the world's harshest side eye, honestly. And then-

Deonna: I need to see pictures ...

Erica: caduceus... I will, sure. Mm-hmm. Caduceus is just a ham. He is, he came out a showboat. Like- ... he is the superstar, never met a stranger. Very- Oh ... gregarious, very smiley, very excited. Loves people, loves, , like, busyness. His threshold for stimulation is way lower than Margot's. He's like, "Take me to the party. Let me be with my people." Very loving. I love that. Very much a mama's boy. Margot's definitely classic daddy's girl.

So, it's- it's been really beautiful as a parent of two [00:48:00] profoundly disabled children with cognitive and intellectual disabilities to see very normal, classic sibling stuff go- develop. They're different personalities. - Yeah ... the things that happen with the younger sibling that are different for the older one, It's been a privilege, and honestly- Mm-hmm probably the greatest title of my life to be their mom, so. 

Rhandyl: Yeah, I love hearing stories, especially with both of your kids being disabled about the sibling interactions, 'cause yeah, I was so worried when I was expecting my son, my second 'cause my disabled child is my first. Mm-hmm. And so I was already like s- goofy me, but I mean, I'd already been through so much trauma that I remember already grieving the sibling connection- Mm-hmm ... was it going to be- Mm-hmm ... the same as what I experienced, growing up. But then seeing it come to fruition, and now that they're older and seeing how they interact and how big sister is, the bully and it's just [00:49:00] like- So it's... and I just I don't even, I just let it happen 'cause it's just like the best. I'm like, "Okay." Mm-hmm. All these things I was worried about you know- Mm-hmm ... that was silly for me to think 'cause it's so cool to see the dynamic.​

Deonna: We had so much fun talking to Alyssa and Erica that we decided to extend this episode into two separate episodes. And so catch up with us in the next episode to get to hear more from Alyssa and Erica about very difficult decisions they've made as parents of disabled children and, ,, transferring to a different hospital when they felt that that was necessary.

All four of us have been through this, and we wanted to give that part of the conversation its own place. And so we will see you guys next time.

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.