This Is What It Takes with Special Guest Rebecca Tuoni. Unbreakable Caregivers

The fastest way to feel powerless is to sit in a hospital room while someone talks about your child like a “case” instead of a person. So we invited two caregivers who refuse to be sidelined: my co-host Victoria Cure and attorney and longtime advocate Rebecca Antoni. Between them, they’ve lived the reality of complex care at home and in the ICU, and they’ve learned how to keep moving when the stakes never drop.

Victoria shares a caregiving journey that starts with surviving domestic violence during pregnancy and leads into months in the NICU, repeated emergencies, trach care, feeding tubes, seizures, and a level of hypervigilance most people can’t imagine. Rebecca talks about growing up as the younger sibling of a profoundly disabled sister, then later adopting a child with VATER syndrome and navigating shunts, autism, pulmonary issues, and life-threatening complications far from home. We also get honest about the parts people whisper about: sibling impact, marriage strain, guilt, and what burnout feels like when it isn’t resentment, it’s a nervous system that’s simply worn thin.

You’ll leave with practical medical advocacy tools you can use immediately: how to push for answers without losing your humanity, why your gut matters, and simple systems like a one-page medical spreadsheet, a baseline video, and even an ER paperwork hack that keeps you at your child’s side. If you’re a parent, caregiver, clinician, or advocate who wants real-world insight into special needs caregiving, caregiver burnout, respite care options, and navigating hospitals, press play. If this helped, subscribe, share it with someone carrying the load, and leave a review so more families can find it.

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https://podcasts.apple.com/us/podcast/holding-it-together-kinda/id1894015512

Transcript

Welcome And Why This Conversation

SPEAKER_00 0:02

Hi everybody, it's Mike Makniak here. Welcome back to another episode of This Is What It Takes podcast. Of course, I am here with my partner and better half, I guess, in this regard, uh Victoria Cure. And we have a very special guest who is one of my good old old friends, Rebecca Antoni, attorney extraordinaire, and and and really good longtime friend of mine, lifetime friend of mine. Listen, in the world of human services, very complex world where we're dealing with human services, and invariably, especially Rebecca, as she's known now professionally, and I get involved with family advocacy, we spend a lot of our energy documenting the failures of the systems and the cracks that families fall through every single day and whatnot. And that's pretty much what I do on my Holding It Together podcast, kinda. But today I'm joined by these two powerhouse women and two of my favorite people because they've both navigated the grueling uh reality of raising uh special needs kids while maintaining their careers, their families, and the semblance of a life for themselves. I mean, you guys know Victoria Cure is my host and partner on this podcast. And as I said, Rebecca comes here as well with just a wealth of experience and strategies and ways that the law can help, and the way that they have helped themselves and their families. And they have this profound expertise because they are quietly doing the work that they talk about in their own lives, which is just the most impressive part of everything. So today we're not going to talk about policy, we're not going to talk about flaws and laws, we're going to talk about the grit and the guilt and the hard-won workarounds that allow caregivers like these wonderful people to keep moving forward when the weight of the world feels like it's unsustainable. So the way that I want to open up with this is for

Victoria’s Survival And The NICU

SPEAKER_00 2:20

each of these beautiful women to give you all a taste of their caregiving life and how they came into it. And I guess Victoria will start with you. Tell us about your situation. I mean, most people that are listening probably know most of it already, but just for those who have never met you before or have never seen or heard you speak, tell tell a little bit about how you came to be here and why we're partners. And well, not that's another day. We don't care why we're partners. We care about why you're here. I care about your caregiving journey and the sorry to say unfortunate events that brought that to be. So go for it.

SPEAKER_03 3:07

Well, thank you. And welcome, Rebecca. I'm glad you're here. And well, I survived domestic violence and it occurred while I was pregnant. And I made a deal with the devil. I said that as long as he didn't hit my stomach, I wouldn't fight back because when you get punched in the middle of the night to tell you to get up and go get him something to drink, you know you can't de-escalate that situation at that moment. And I did get out and I survived. And I was put into the hospital and the ICU and the ER and everything more times than I can count. And the last time I was in the ICU, they told me I had a 2% chance of survival, and that if I made it through the night, it would be a miracle. Eight days they tried to stop the labor and contractions because she was too early. And then finally, we ended up going in for an emergency C-section where we both coded and they life flighted my daughter to a children's hospital an hour and a half away. And I know Rebecca can say that this is a mom, but when when you're laying there, and I never even got to hold her. And I literally watched them run her down the hall in an incubator, and I hear a helicopter taking off. My heart was in that helicopter, and I felt like every part of me was dying at that moment. And once I got out of the ICU, I was in a wheelchair and I stayed in the NICU with her just shy of six, just a few days shy of six months. And we were coding every single day. We had epilepsy. We were having seizures left, right, and center. When I finally got to her, the first day I got to her, they held the OR so that I could see her and they were gonna wheel me down while I can hold her for the first time. And she had mandibular distractions, which are metal rods put behind the ears where you crank them with a device twice a day and it brings your jaw out because she didn't have an airway and she looked like she didn't have a bottom jaw, and it's Pierre Roman syndrome. And so we ended up doing that, and then they drilled holes in her nasal passage and gave her nasal stents at just a few days old. And then this continued, the coating continued down the road as it continued. We ended up having to do a tracheostomy, which she had. They thought she'd have it till at least middle school by the grace of God and lots of prayers. She had it until she was two and a half. She had a feeding tube because she couldn't take anything by mouth. And so everything to sustain life was done through a feeding tube. So we had the G tube, we had the GJ tube, which is fed through the germum. When I went anywhere, and I know Rebecca knows this, you have a pulse oxometer, you have the apnea belt, you have the emergency kit, I had oxygen. She was on CPAP, you know, you had your emergency trach bag, you had I had also the feeding bag, and there was 11 pieces of equipment that, you know, including all the bags and stuff, that had to go with me everywhere I went. And if she had an occlusion in her trach, you have to do an emergent trach change and you had to keep saline and you had to keep everything clean so there wasn't a stoma infection. And all of these were, you know, things that were going on. And, you know, we were going to 25 doctors and therapies a week. And in between that, we're implementing in what we learned at those therapies. And it was literally a 24-hour-a-day responsibility. And they would say to me, it's okay for you to grieve the child that you didn't have. And I didn't see that that way. I saw it as she's here and she survived and she's amazing. And I'm gonna celebrate every minute of life, even when we were in medically induced comas. And I I did. And so, you know, we've had well over a counted of over a hundred ER visits, 54 surgeries to date. Two years, two and a half years ago, I almost lost her. She went into complete organ failure, and they told me we'll keep her comfortable and let her pass overnight. And that was not even an option. She ended up in on every kind of machine you can imagine, including, I mean, full life support and kidney failure. She was at stage four. They I started the process to do kidney donation. Dialysis was in the room. She was coding back to the OR. They left her stomach open. She has about a two-inch wide incision from her breastbone down to her pelvic bone, all the way down. They left her stomach wide open. She was too fragile to go down to the OR. And she had 25 surgeries in the pediatric ICU in a five-week period. And they took out 70% of her intestines. We thought we were going to get a colonoscopy bag, but she's such a fighter. She's such a fighter. And they told me she'd never eat, she'd never drink, it'd always be tube dependent because she has basically a non-functioning, non-existing tongue. It's about a millimeter and a half wide, and the anatomy in her mouth is completely different. So it sits way in the back. She had a hearing aid and we had ear surgery, and by the grace of God, that's got away. She was decannulated. And but the thing is, is that every minute of the day you lose who you are because your whole responsibility is your child. I gave up my corporate career, but I don't feel like I ever lost anything because that's my daughter, that's our child, and that's our responsibility as our parent. But a lot of people in my life decided, I'm not gonna deal with this, I don't want to deal with this, and they would just leave my life because I'm not gonna that's way too much for me. I mean, even people very close to me were like, I couldn't handle this. If this was my kid, I just I couldn't do it. And parents that are really truly loving their kid, they don't they don't see it that way. But you lose a lot of people in your life, you lose yourself, you lose who you are, you lose your way about yourself because everything is like with her, she she has a swallowing aversion, so she can choke on water because her airway is so small. So you have to watch her intently without her realizing it and making her self-conscious. She had epilepsy back then, so I had to always make sure everything was safe if she fell and dropped down and had a seizure. So these were all things that you had to implement every minute of life, and you're always on high regard because you're wondering on the what if. And if that high regard comes off for even a minute and something happens, you'll never forgive yourself. So all of the settings on the apnea monitor I set even higher because I have hearing impairment. So I set it up even higher, and I'd have even the baby monitor like right at my head, and I, you know, when she was asleep, and everything you have to do, your whole world changes a thousand percent.

SPEAKER_00 9:52

Well, yeah. I mean, you you went to, I mean, hypervigilance.

SPEAKER_03 9:58

You know, you go into a doctor's office and you say, I can't sit in here with kids that have a cold when you have a tracheostomy child because they could get RSV. I mean, their immune system is suppressed, so you can't you can't do that. And then there were so many times that I would go to the ER and they're like, the ER doctors don't know how to handle a tracheostomy change, or they're like, I don't know how to do a trache change.

SPEAKER_00 10:22

Well, so along along these lines, you've had to not only be a mom and give all that love that that you it come is innate with being a mom, but you've also had to learn all of the the skills and thrills that go along with being a caregiver, a doctor, medical home, a medical home.

SPEAKER_01 10:41

We're medical home.

SPEAKER_03 10:42

Yeah, yeah, yeah. And you have to keep everything sterile. When you're in the NICU, you have to be they'd make you get trained on everything for 24 hours. The nurses are outside in the station, and they'll hand you the medicine, but

Medical Home Life And Hypervigilance

SPEAKER_03 10:55

you have to handle every situation by yourself without medical help before they'll discharge.

SPEAKER_00 10:59

Yeah, that's actually pretty amazing, and I'm glad that's I think it's brilliant.

SPEAKER_03 11:03

I think it's absolutely brilliant, and it should be done.

SPEAKER_00 11:06

Now, back.

Rebecca’s Sibling Story And Responsibility

SPEAKER_03 11:08

Yeah.

SPEAKER_00 11:11

Last time we spoke, you reminded me that you were brought up in a home as a younger sister, but you know, and I in a with a family that was constantly in caregiving mode as well. I totally forgot about that until you mentioned it last week. So you your story is is certainly drastically different than Victoria's, but you come from a place of experience as a caregiver, experience with special needs. And I wonder if that influenced your decision to become the mom that you are now, and and you could tell if you could tell the folks that story about G and and that whole history.

SPEAKER_01 11:58

Yeah, so it's it's interesting, you know, like in our 50s, I think you were sort of coming to terms with a lot of like why we are the way we are. I don't know if that's happening to you, but it's happening to me like so much now, especially because the kids are the three big kids are out of the house, and I'm just having these like reflective moments and stuff. And I'm just sort of realizing like what impacted me when and why. Like, and so being being the younger child, the younger sibling of a profoundly, so my sister is profoundly disabled, non-ambulatory, non-verbal. When she was born, it was microencephaly, so her brain never fully developed. It's not, it's it's small. And so at 60, at she's almost 60, and her IQ is that of like, you know, an 18-month-old. So she knows basic, she can respond to basic, basic things and she has basic joys. I mean, she definitely has a quality of life and recognizes and gets excited when you know, when she sees my parents, and a little less so when I'm there because I like take attention away from from her, but and definitely not when my kids are there. Like, she does not like my kids being around, you know, because they take attention. But but you know, growing up, it was interesting because like I have now started to think about, and I was listening, reading. Do you ever listen to Gabor Mate or read him? He is like, he's he's a a doctor who has started to do this like trauma, trauma research, and how he's looked at individuals that have had trauma like in the past, that how it's impacted who they are as adults. And so, and so, like what's really interesting for what I think for me, and I don't necessarily, I don't necessarily call it trauma, but I I for what me, but like in my world, because I was the younger child and my sister was so needy, like, like so needy, and she was sick and she cried nonstop and she had grandma seizures and she was, you know, all of these things. There was very little, not, and this is not an indictment of my parents in any way, there was not a there was not a lot of focus for me. And so I think from a very, very, very early age, I became a self-soother, you know, or I became a person who was like, I'll do it, I'll get it. Like, you know, you you kind of like become and and that is so fitting with my personality now. Like, no, no, no, I got it. Like, I got it. Like, no, no, no, I'll do it, I'll do it, I'll do it, you know, like and and everything, I don't want to inconvenience anybody. I don't want to like, I just want to like, you know, plow through, get it done, and like, you know, even if it's at all cost to me, you know. And so I think that that has been, and then you add to it that like my parents were, you know, very very my dad was very strict. And so all the pressure was on me to be successful and to have this extra pressure on me and stuff. So, like, even going through, and I mean, I don't know if you remember like in high school how much trouble I used to get in, and I was like constantly grounded in high school. Like all the parties that we went to in high school, I snuck out to. I went must have seen, I must have seen Ghostbusters like 30 times because that was the only thing I was allowed to go to do is movies. But so it was just this extraordinary pressure. And so that really shaped who I was going to be as a parent, but it also shaped, I mean, so my sister was placed when we were, we were like she was just about 10 when she was placed because it just became too difficult. And the supports back in the 70s were very different than what the supports are now. Like now you've got like the Kitty Beckett Weaver, and you've got like programs and things that can support families keeping somebody, uh keeping a child at home. Or, you know, uh cerebral palsy in a lot of kids is based on some kind of medical malpractice. And so there's a settlement or something that helps help support. My parents didn't have any of that. And not only did they not have that, they didn't have a culture that supported supported that. I think my grandfather, my dad's father, told told my dad in the hospital to just leave her there, like don't even bother taking her home because she was like of no no use. And so, you know, my parents were never gonna do that, but but that was the that was the attitude, right? Like that was the that was the perspective. And so, so all of that sort of shaped, shaped who who I was kind of coming up. And then when she was placed, we spent a tremendous amount of time. Like weekends were spent going back and forth to seeing wherever she was, we would, you know, we would spend an entire day like going and visiting her, or like, you know, she we'd come home for a while or weekends and stuff, but it got very difficult because the bigger she got, like, you know, the harder she went and the older my parents got, the harder, the harder it was to manage her. And and, you know, so that has sort of evolved over time as well. But I think from going to group homes and you know, institutional settings and stuff, because she was in an institutional setting before they started to de-institutionalize and go towards that self-directed model. Um, you know, I spent a lot of time in my youth growing up on weekends in and among, you know, people that didn't look like like our our friends in school, you know. And so I think I had an inherent sort of like, I don't know, capacity or no choice, you know,

Adoption And Learning Complex Care

SPEAKER_01 17:05

and it just I just it kind of directed me in the way of that. And so, so then when it came to practicing, so well, then I went to law school and when I got out of law school, so you know, I had Matthew when my second year of law school, and I graduated nine months pregnant with Jack, and then I was sworn in five months pregnant with Emily. And then so, and then when I started to practice when I was gonna practice, I'd been a paralegal, so like I didn't like I was just like trying to keep my foot in the door because they were three little little kids. I mean, they were babies, you know. And so I started to do some probate court appointment work, and that sort of led to I met the partner that I'd worked for. And in one of the probate court appointments I had, there was a young girl who was placed at St. Vincent's Faroletto School in Trumbull. And after Emily was born, I had to have a radical hysterectomy. And so I was like, I just felt like I had I was supposed to have four kids. Like I just always felt like I was supposed to have four kids. And like, and I just was like, and then I kept saying to to my husband, I'm like, you know, I I think like I think I'm supposed to adopt a special needs child. Like I think that, like, I just think that that is I I'm not complete. Like with I don't feel like I'm we're our family is complete yet. And like, and I don't feel like I feel like there's a child out there. And oddly enough, one February morning, I don't know what came over me. And I looked, well, divine intervention is what I think came over. And I was like, I was on the DCF website, and they had just posted this heart gallery, and it was these special needs kids that had been in the system for a while. And I saw him, I saw it, I saw G in this picture, and I knew where he was because I had a client that I was the guardian of that was at that facility. So I called, I called the director and I'm like, Tammy, I'm like, why didn't you tell me? You know, I've been talking about adopting. She's like, Oh my God, I never put it together. And so within, within like two weeks, like we were doing home visits and we had the whole, the whole thing. And the kids were, the kids were like bought in like, you know, immediately. And but then we had the whole system to go up against because DCF, the system is, you know, is very skewed and just designed in just a kind of a wonky way. And so ultimately when he came home, he had spent the majority of his life at that point. He'd spent about three full years in a hospital.

SPEAKER_00 19:38

How old was he at the time?

SPEAKER_01 19:39

He was about six when he came home.

SPEAKER_00 19:41

And how old were your other kids?

SPEAKER_01 19:43

So Emily, Emily was just a little bit, is only about eight months older than him. Oh Jack is two months older than her, and or two years older, 18 months older than her, and then Matthew is two years older. So they were all like the pocket. And what's funny is like if you look at Matthew and Emily, they look just like my husband and they make sense. And then if you take Jack, Jack looks like me, but doesn't look like them. But then when you put Ganon in the mix, he makes them all look make sense. Like everybody, everybody fits all of a sudden. You're like, okay, oh, right? Like you would never know that he wasn't biological.

SPEAKER_00 20:18

I never knew that was his real name. That's a cool name.

SPEAKER_01 20:21

Yeah, yeah. And we so we had the whole, so but when he came home, I mean, he had he had, you were talking about like, you know, in the the ICU and and there the the NICU. I mean, we had to have a whole masterclass on all of his issues because he had had, he was born, he has Voder syndrome. And so Vader syndrome when it is a constellation of issues that when they present at birth, it they they call it voter syndrome. So V is for vertebrae, A T is for, he had a T fistula, which is a hole between his trachea and his esophagus that had to be repaired. He had he has hydrocephalus, so his, you know, he had a shunt. Well, he still does, has a shunt through his ventricles. He's autistic, he's, you know, he's just like a host of things, pulmonary issues, he only has one kidney, like all of these things, and and has a lot of had a cleft palate and has a lot of anatomical, you know, malformations kind of like of the anatomy in his ears and his mouth and and stuff. So, so there were a lot of things that were not stable. There were a lot of emergency things that were done when he was first born. And then when he came home to us, like there was a lot that was not because he'd been living in that hospital setting, which was a really interesting thing. And and and Victoria, you probably like know this thing. When you take them home from the hospital, there are so many things done. And then you're like, Well, we we can do, we don't need that. Like we can, we can take them off of that. Like, we can take them off of that. And like, I'll take responsibility for that. And then when you're doing that, when you're taking them off of that stuff, you're also creating like, so I had a full, I could do a full respiratory therapy. I had a vest, I had the I had ever all the pulmonary stuff, anything you could do in the hospital, I could do at home. And we had a G tube, we had, we had, you know, just like uh feeding, you know, the feeding tube and stuff. And like just and we were interviewed one time on on, I forget, like some some news channel, and they were asking like the kids like what they did. And if you listen to Matthew's interview, and he's like, he's like 10 at the time, and he's like, Yeah, I feed my brother, I get him off the bus. Like, you would think that like we all did nothing, that he liked like did the whole thing, which is kind of funny, like their realities around it and stuff. But we've had like super horrible, long hospitalizations. We end up in the hospital because when he gets sick, he gets really sick. And we were, we were, he had had a shunt failure. And so when the shunt fails, like what it does is it stops draining. So really it's just a tube that sits in the ventricle and goes down and it pipes around into his like his stomach.

SPEAKER_00 23:02

And when it backs the ventricle, the ventricle in in and around his brain.

SPEAKER_01 23:07

In your brain, yep. And then so what it does is it drains the the VP shunt is a is a ventricular peritoneite. So it goes into your peritoneum, which is like the the sac that holds all of your guts. Like so it's it's a sack where everything fits. And so the tube goes in and kind of loops around there, and it's long enough so that as he grows, you know, it kind of like grows with them. And so he had one failure, one shunt failure, and sometimes they fail. And you know, it's not, it's not like it's it's not a dramatic thing when it fails, it's sort of a progressive thing, and then it gets sort of dramatic, like as it's really done. So it's kind of like because he's autistic, you don't really notice like what's going on first. And then all of a sudden you're like, huh, like, you know, two and two, like that's four. Like, you know, you start kind of like piecing it together. And then by then he's like, he's sort of like in crisis. And

Shunt Failure Crisis Far From Home

SPEAKER_01 23:55

so we had this one shunt vision that was done in January, in a January. And we were supposed to be going to Florida just on a vacation to see my parents. They were down in Florida, and it's like this nasty neurosurgeon was like, he's fine, like you, you know, you can go, just take him. He's fine. Like, stop overacting, kind of like, mom, stop overacting. And I was like, I was like, all right, like I don't think I'm overacting, but like, you know, we're we're going down to Florida. And and like, and anytime he had surgery, we'd have to have like a special, a special thoracic doctor go in because his trachea, his, his, you know, he didn't, he didn't, he couldn't be intubated as easily. So there was all these like certain protocols and stuff around that. And so, and like I was constantly having to explain, like, no, and like back then I knew exactly like what tubes and what like microfibers and things, and I would take out this report and say, like, you know, no, you need to follow this doctor's like intubation, otherwise, it's not gonna be successful, and we're gonna have to go back and like start all over again. I'm like, and you're or you're gonna hurt him. And so it was constantly that fighting. So this one's nursery, this one procedure. So they do it, and I'm like, you know, he had like an infection, what looked like an infection in his belly where they pulled the tube out. And I was like, that just doesn't look right. And everybody was dismissing me. And I was like, and I didn't trust my gut that one time I didn't trust my gut because we were supposed to be going to Florida, and we were just going down, we were just driving down to see my parents. And so it wasn't even like we were going down for any like big like wedding or anything. So we totally could have stayed home, but I like overrid my my gut and we went down. And by the time we got to Florida, he was like not right. And he I would hook him up to a G YouTube feeding that night. And I was like, I took a conference call and I came back in and he was like moaning. And when you know, autistic kids often don't report pain very well. Like they, they, it's it's sort of like you have to look at other body responses like elevated heart rates or you know, he doesn't really even spike a fever. Like, so you have to really pay attention to behavior in autistic kids a lot of the time. And so I'm like, he's just not right. Like, this is just not right. And then he kept wanting to go and sit in the bath, which was very weird. Like the fact that he wanted to go sit in a bath, like was completely so fast forward, turns out that he is septic and we had no idea. So we drove, so we were in Jupiter, Florida, and I had been on the phone back and forth with a pediatrician like all night. And I was like, you know, what where do what do I do? Because anytime we traveled, I always traveled with my binder of all of his like hospitalizations and stuff. And I knew where hospitals were. Everywhere we've ever traveled, I've always known where hospitals were. And so I was like, there is the, you know, the Orlando Children's Hospital or there's Miami Children's. Like, where do I go? Like both were like an hour and a half away, two hours away. And the doctor was like, Well, I just heard that like the neurostaff at at Orlando has like just changed over. So I don't know, go to Miami. So I'm like, so we literally get in the car because I'm like, I'm not calling an ambulance because I thought they're gonna take us to some walk-in, you know. Like, so we get Mark and I get in the car. We are, we leave the three kids with my parents, and we are like racing down 95, two hours. He is screaming and writhing in pain at this point, which is so, so absurd because like he never does that. We go run basically like jump out of the car, leave it in the driveway of the the emergency room. And I was like, I have my book, and I'm like, I'm like, he's two weeks post post uh, you know, shunt revision. He's so beyond baseline, I don't recommend, I don't even recognize him. They take us back, like a resident comes out to look at us, and I was like, I don't want a resident. I don't want to, and he's like, Nope, nope, got it, got it, get the attending. They take the attending, and during this, my phone is ringing off the hook with like the the doctor's office is calling because the pediatrician is like, like, holy cow, like, you know, what's going on? You're a thousand miles away and like we have no touch. And I'm getting phone calls from work and like all the stuff is going crazy. And and my husband is like trying to manage the other kids because we left in such a crisis. And and so we get in and they they just do an ultrasound and it's all septated bow, all septated fluid in his stomach, which means like he was he was circling the drain. Like, and that's what the neurosurgeon said to me. And I'm like, So I walk out and the neurosurgeon's like, we have to take him into surgery right now. And I'm like, but I'm like, I don't know you. Like, I don't, I don't know you. I don't, I I'm not okay with this. I don't know you. I'll fly him home. And she she took me by the shoulders and she said, Listen to me, I know you don't know me, and you don't, I don't know you. She said, But if you walk out that door, you're gonna take a dead body home. And she said, just like that. And I was like, okay. It was like, all right, what do we need to do?

SPEAKER_00 28:44

And let me slap you into uh it was like you're taking a dead body home.

SPEAKER_01 28:49

And it was like those words, like, and you could not have penetrated my brain with anything other than dead body. Like, and so so we ended up, so then we ended up being he and I had to stay in Miami for about seven weeks, and Mark and the kids had to go back home because you know, they had to go back to school and work and and everything. And like I literally practiced law from his, I was taking, I did, I did a probate court hearing, an emergency probate court hearing in the nurses station in ICU in Miami Children's Hospital. Like I just I like couldn't couldn't miss, I didn't have the luxury of missing a beat, you know? And he had he had four he had four brain surgeries in that period of time. And and what happens to him is, and I'm sure Victoria, this happens to you, like you get sick with one thing, and then you get a super infection of another thing. And I kept saying, like, he's gonna get pneumonia, like we need respiratory to come in and consult. And it was what was really cool is the doctor said the the infectious disease doctor during like their rounds said, Listen, this is a learning experience for all of you. He basically said, and he was very attractive, this infectious disease doctor.

SPEAKER_00 30:01

And he said Well, if you're gonna be an infectious disease doctor, you better be attractive.

SPEAKER_01 30:05

Totally. I mean, he was really, he was really quite striking. And he said, he said, listen, and it's not just because he gave me all this this cred, but he's like, when a mom of a special needs child tells you to do something, you do it and you don't question. And I thought, and I was like, Thank you. I was like, Oh, I'm like, I mean, finally, like, thank you. And so that's not normal. No, that is like so, yeah.

SPEAKER_00 30:27

That's something that, and that's something that Victoria talks about very often when she gets when she gets going, like you get going. Yeah, she talks about that a lot, is is about listen to me. I know what the hell I'm talking about. And we say that all the time too, you know, include include the family here.

SPEAKER_01 30:44

The family, right?

SPEAKER_00 30:46

Has so much history. I mean, even for my well, all of us, even for our own medical. I got questioned one time when a medical student was questioning whether or not I had an ear infection. I've had an ear infection since I was like two years old.

SPEAKER_02 30:57

Yeah, yeah.

SPEAKER_00 30:58

I have an ear infection, you know.

SPEAKER_02 31:00

Anyway, yeah, this isn't about me.

SPEAKER_00 31:02

This is about the dynamic work that, and and thank you both for Jesus, putting through, putting up with and putting resilience to go through all of this stuff. I mean, you brought up so many things that I want to talk about that we probably don't have enough time to talk about in one episode, and we might have to have another part two. But one thing that you brought up from your perspective, Rebecca,

Siblings And The Unspoken Family Costs

SPEAKER_00 31:25

that that's always been a concern to me and something that I want to talk at length with. If there's anybody out there that's listening that is a specialist in this or and has lived experience in particular, is the impact on the siblings in the home.

SPEAKER_02 31:39

Yeah.

SPEAKER_00 31:40

I think that is a huge undervalued and understudied, maybe even underappreciated, group of people that that should have a voice too.

SPEAKER_01 31:52

I literally, I literally it's funny that you say that because I last weekend I literally wrote an article for our summer newsletter for the firm's summer, our our department summer newsletter about the other the other child in the room, the sit the role of the sibling in in special news.

SPEAKER_00 32:06

Well, you should get that over to us so we can public we can get it out there and publish it to our tribe too.

SPEAKER_01 32:11

Yeah, because it's that's it's so it's so important because I think too, like to that point, uh the kind of what I was trying to say in the article and something that I talk about a lot of the times when I'm when I'm when I'm meeting with families, is like don't assume that it's that the siblings want to take on a role or that it's fair that you expect them to take on a role. Like so, like ask, it's it's a completely appropriate and and right to ask them if they want to, but like with no judgment, like literally, I don't want you to feel left out of this, but I don't expect you to want to do this, you know.

SPEAKER_00 32:47

If you and folks, if you look up one of our holding together podcast, holding it together kind of podcast conversations, Rebecca goes into detail about the conversation that she had with her adult kids about this. It's really impactful, and it's really important that that conversation does take place. It it's very important now. Listening to uh the two of you, moms, talk about the raising of your children, it almost seems impossible for me to even go to this next question. And I,

Guilt Burnout And Nervous System Fatigue

SPEAKER_00 33:20

you know, knowing the two of you, I pretty much already know the answer. But I'm trying to put you into a place where you could imagine other scenarios, other caregivers who may part of the burnout from caregiving, part of the initial symptoms, if you will, of the burnout of caregiving, I think has to be the idea of I'm feeling guilty because I'm not enough or I don't know enough, I can't do enough. I'm feeling guilty because from time to time I resent having to be in the position that I'm in. I feel guilty because my life is dedicated around everything to do with the child, and I'm I basically now my my identity has become that as opposed to anything else. Now, again, I know you two very well, and I know that you're probably it's very hard for you to imagine your life as anything but this absolute dedication that you just so uh brilliantly uh laid out for for everybody. But uh Victoria, can you see and can you relate? And you have have you personally had any experience first? And can you can you see alternatively, can you see and relate to why people would have those feelings and and how to maybe approach that?

SPEAKER_03 34:45

That's a big yes, I've never had that. My daughter Faith has been like she does fundraising every year and since she was four. And we raised two to three hundred toys, and every year we go to the facilities, and like if there's a little boy or a little girl in the bed, she would say, I have a bad memory. I don't remember which one you want, pick one. And if there's a sibling in the bed, she always says, Hey, by the way, your brother wanted to give you a gift, pick out whatever you want. And she'd always say it was from the child in the bed. I've never been, I've never had that burnout. I've always just, you know, because I'm so I'm so lucky to have her, and we weren't supposed to make it. And like being that I'm in the hospitals like I am, and I advocate for special needs families, and I do see parents and I do see a lot of the siblings, and I always try to make time to talk with the siblings and you know, try to interact with them too, because they're just sitting there a lot of time on their phone or their device, and they feel like they're forgotten, right? And I'll bring activities to do for them that's fun and interactive with them. But I see a lot of times a lot of parents, a lot of marriages, you know, end up divorce, it's huge. Marriages do not stay intact when there's this kind of situation.

SPEAKER_00 35:55

For sure. We were talking about the impact on children, and that's another thing that should be studied is the impact on relationships and family. Oh, yeah. Yeah, I know that there's much more literature on it than that, but sorry to interrupt, but go.

SPEAKER_03 36:06

Yeah, but but I I've seen it a lot, you know, a very dedicated for the most part, men leave. That's not, you know, that's the the fact is that most of the time the men leave. There has been plenty of time where it's been very hard for me, especially because Mike, you know me, it's very hard where I get called and asked to be the advocate for this child, and I'll go in and I see a mom that's just like, she's ruined my life. He's ruined my life. And I'm just like, you know, or how can you be that way? I can't do this anymore. I I'm burnt out, you know. I just want to go to a soccer game, I want to go to a ballet game. And I'm like, you know, and you have to maintain your professionalism at the same time you're inside going, what the hell is the matter with you? But they do get burned out.

SPEAKER_00 36:46

But you're that's a tough, that's a tough, that's a tough thing.

SPEAKER_03 36:48

That's why you can't say anything. You have to go in.

SPEAKER_00 36:51

Everybody has their own journey in this, absolutely.

SPEAKER_03 36:54

But I mean, like I say, I go in there and I maintain my professionalism, but it's like, let me see if I can help you de-escalate this stress level that you're in by implementing some things you might not know you're available for, like the Katie Beckett Waiver. Let's see about getting you in some extra activities, or see if you can get respite care, or let's see if you know, because most people don't even know about respite care, or let's see about getting you a nurse part-time because you should qualify for some kind of helpful nursing. So maybe you can even take a couple of hours, go to the grocery store, or go to sleep, or do something, you know, these are things that you might not realize that you have available to you. So let's try to make it better for you. And you try to like make them feel better about it, and then you try to do things. I try to do things that kind of bridge the the gap with the child and the mother together, too. That helps. But you know, it is it's tough, and especially because most doctors, even in an emergency situation, and you're coming in with your child, they don't either they love a special needs mom or they hate us because we

How To Deal With Dismissive Clinicians

SPEAKER_03 37:55

will not put up with their crap. Like we will go over their head. Like when we were in the children's hospital, at one of them, it was a teaching hospital, and they would walk in with like nine residents, like even Gray's Anatomy, right? Oh be like, Oh, here is Faith, who's six years old, who presents with and I'm like, stop outside.

SPEAKER_01 38:16

That's why that's why I give my spreadsheet because I'm like, don't come back and ask me a question that's on the spreadsheet. When when we came back from that, I don't mean to interrupt you, but I'd tell you one what I can tag on to that story. We came back from the first follow-up appointment we had with GI when we came back from Miami, because I had to go to each specialist and give them an update. It was just at the turn of the the um the uh interns, and they sent in an intern and she looked at him and I tried to explain the story, and I was like, I didn't want, I'm like, with all due respect, I really would rather not tell you this story. We have just been through it. Like, you know, I said, I would rather just talk to Dr. Pushankar, like, can you please just get him? She's like, Well, let me just take notes. And I'm like, I'm like, fine. I'm like, literally, I was just like, fine, fine. So she looks at him, she looks at his G2 and she goes, Is that his shunt? And I'm like, I'm like, Out, and that's exactly what I said. I said, That's it. I said, That's it. I said, that's it. I said, if you do not know what a shunt is, and you what the difference between a shunt and a G2. I'm like, you have you have you have bigger issues here, and I want the doctor. So I was just like, yeah, that was like that was one of those moments where I'm like, nope. Nope, nope, nope, nope, nope.

SPEAKER_00 39:33

I hope I hope that some of you people get to watch this in video and be hiding under the desk right now.

SPEAKER_03 39:39

Well, we had a whiteboard, and like we the people would come in the room, and and I'm like, I'd go out and we'd walk out. And I'm like, listen, let me make this very clear to you. She's not a case, she's not a patient number, she's not a file. It's not, let's see what we can get from the insurance. That is my kid. This is red hair, this is the line, don't cross it.

SPEAKER_01 39:59

Oh, and by the way, she can hear you.

unknown 40:01

Right.

SPEAKER_01 40:02

Like, by the way, he hears everything you're saying. And so I think he would probably not want to be referred to as a case or a number. Like, he gets it. You're and you're talking about what you're gonna do to his body. So, oh, why don't you talk to him about it? Right. Oh, I get so I so furious.

SPEAKER_03 40:19

Yeah, you just want to come in and they're like, Oh, well, this is such a great learning case. I'm like, say it again. Right, right, right, right. And then I was like, Do you know who Dr. Tally is? And they're like, I'm like, yeah, he's the CEO here. I have his personal cell phone number. Do you want me to call him right now? Because I just got out of the elevator with him yesterday. Go ahead and do this again.

SPEAKER_00 40:36

And they're like, every time we get talking about this, you guys go right to freaking nastiness. I'm just gonna go.

SPEAKER_01 40:47

It is it's it's zealous. It's it's zealousness. Because because uh for every one of us, for every one of us, there are a hundred of women or parents that that are just getting getting pushed aside and are getting over. So if we can if we can show you like this is how you treat, and I'm always very respectful. Like I don't get too. I don't get mean.

SPEAKER_00 41:10

Yeah, I don't get mean is it uh just me that brings this side of you.

SPEAKER_01 41:17

And it's two mom, it's two mom shit with with similar experiences that are like you're seeing the mama bear coming out of both of us, because like that is like, yeah, I am I am very gracious and I'm and I I will give like I will validate, like I know how hard this is, I know there's a lot going on here. I, you know, all I I totally respect what you do. I also will do, um, I'm always like when he's hospitalized, I'm always like, don't worry, I will change his bedlins, like I will, I will do the diaper changes, I will do the G2 feeds, I will do whatever you need me to do. You don't even have to think about his hygiene issues. I will take care of that 100%. You know, like I'm like, you don't have to do any of that. You just have to come in and do his meds, like whatever I can't do, you do. But don't be late bringing my kids' meds, right? Like, don't make him don't make him a pain. Yeah, yeah.

SPEAKER_00 42:05

I have a confession to make here to everybody listening right now. He's scared of I wanted to do this podcast, I thought this would be a great idea. And right now I feel like I'm really the in the piranha pool.

SPEAKER_03 42:18

No, but see, that's the thing. It's it's like, you know, like they told her that and I know she'll get it. They they said faith cannot walk the floor. Why? Because she can't, she can't sit in this bed. We've been in this room for a month. So, okay, guess what? We're gonna do get the IV pole, right? Get her cute little your little slippers on. I put her slippers on, I get her on the IV pole because she was teeny, teeny, tiny, like she's still teeny tiny. And I put her on the IV pole, I took my robe and wrapped it around her, took the robe tie, wrapped it around the IV pole, tied it, and we were walking that, and I was like, she ain't touching the floor. It's you know, it's all about how you you write the report. It's like she ain't touching the floor, she ain't walking the floor, she's rolling. And we would go get candy for all the nurses, and we would say, Thank you for what you do. How is your day? How is your husband? Oh, you're planning a wedding, how's that going? You know, and we treated them like human beings. Now, if you did something like, Oh, is that a shunt and that's my kid's tube? They are not gonna want to come in the room. Right, exactly. Exactly. But we have nurses that will fight to get us when we go in.

SPEAKER_01 43:24

They're like, Yeah, I still have nurses from hospitalizations that I'm friends with on Facebook that like I've kept up with from from you know 15 years ago. Like, absolutely still still friends from from hospitalizations and follow, follow them. No, absolutely.

SPEAKER_00 43:39

All I had to do is go to keg parties with you.

unknown 43:42

That's right.

SPEAKER_01 43:43

Can't even do that anymore, right?

SPEAKER_00 43:45

So, all right, so the conversation regarding those emotions that I laid out before obviously needs to be reserved for another time with another couple of people because you guys are definitely not there. And that's great. I you know, all the power to you because you are strong and you've overcome that. But I do want to acknowledge that the reality of a lot of people is the resentment, the guilt, the overwhelm. And you know, you two have certainly taken this by the throat, and and but you know, and that you you can share or not share stories of of overwhelm, but you know, and how much is career and things like that too.

SPEAKER_01 44:29

Yeah, but I would say I would, I would say I would, I would differ from Victoria a little bit in that that I definitely have am burnt out. Like I'm definitely, and I don't know, I mean, I'm burnt out from from from it all. I don't know that I have a resentment towards anything in particular. Like I wouldn't say that I have a resentment about things. I don't think that's the word I would use for what I have, but but life has life at this that it's like I I say like my nervous system, my nervous system.

SPEAKER_02 44:59

You're frayed.

SPEAKER_01 45:00

Yeah, it's like it's like like I I row, you know, I'm on a rowing team, and like I don't want to compete right now because my nervous system is so fried from all of these things. Like it's now I'm looking back and I'm like, God, I'm just like I'm I'm like fried. And so I need to like let my nervous system heal. So it's not like resentment because I would I never resented anything about him or any of my kids, but like like overwhelmed and overwrought and just stretched. Like that's that's the feeling that I have, and just like that constant, like at me feeling.

SPEAKER_00 45:36

Well, at the same time, you're you're you're caring for these high need kids. You're also doing a lot of highly impactful work for people, other people who are in need. And there's something to be said not only about you as the heroines that you are, but but about you know, I wonder how much of that feeds one or the other. You know, is it a chicken or the egg? You know, what is it is it a reason I do this work because of what where where I come from, or I'm come from this because of the work that I, you know, and vice versa.

SPEAKER_01 46:08

Oh, I had a judge, one of the first judges that I worked for, and Judge Crame in Stratford, he said to me, he nailed me early on. He was like, You have an overdeveloped sense of responsibility towards everything.

SPEAKER_00 46:19

But you I could see that from when you were a child.

SPEAKER_01 46:21

Yeah, no, for sure. I've I've had it, I've had it. I was always gonna, I was always gonna be, I was always gonna be, be this, no matter what I did. And so so that's a reflection, you know.

SPEAKER_00 46:31

And Victoria's taking it to the level where she's made a movement out of it to really give a voice and strength to you know, other women who have gone through the the horrific events that she went through. I mean, so I mean, not only is her story horrific on the on the level that with the abuse that she sustained, but then it's heroic on the level of what she's done for her child and and what what they've overcome together.

SPEAKER_01 46:59

Was she was faith was faith born she was born prematurely because of the abuse? Yes, that's like that's unbelievable.

SPEAKER_00 47:08

Yeah, that is that is I mean your story is a whole nother level of it is and and and yours is too, and and neither one, you know, is is everybody's on their own journey. That's why I said, you know, I know I know perfectly well because I've spoken to these women, and well, not just women, men too, who have that resentment and and that guilt feeling, and it and I just want people to know that that it's okay, but to to Victoria's point, let us help you get some tools, and you you know, in your diatribes and yelling at me about this just now, you both came out and and said yelling at you, no, but but when you guys were were were emphatically speaking your your stories, you you threw out there some things that I think can be translated into useful tidbits and useful tools. So I want to go back and forth and just say, okay, so Victoria, in a in a quick

ER Paperwork Hacks And Care Spreadsheets

SPEAKER_00 48:10

couple sentences, what's one good workaround that you've oh, I know one that you told me about, but I can't remember exactly what it is. What's a good workaround that you no, it was Becky, it was Rebecca, sorry, that that told it to me. What's one good workaround that you would offer to parents and care, not only just parents, but any kind of caregiver that you've learned and and you would want to impart to them?

SPEAKER_03 48:33

I was pretty sure I thought you were gonna talk about the paperwork. I've and I tell this to people all the time who are frequent flyers. I mean, we were in the emergency room at least once, if not twice a week for a while. And so that was with inclusions of traits and coding and and things of that nature. And so I said to the parents, I've said this for years, that you go in there and they give you a bunch of paperwork and they're like, we're gonna go ahead and take your child back and you fill out the paperwork. I'm like, yeah, I don't think so. So what happens is I'm like, my insurance card is not changing numbers before I get into triage. So it's fine. So what I've done is I go in there and I'm like, can I get an extra set of papers? And I've messed this up, right? And then I just kind of fold them up and put it in my bag, and then I go about my business and I fill it out. So when I get home, I I fill it out and leave a couple of spaces of what brought you in here today, and then I fill out all the rest because the forms don't change. And then I put them in my emergent bag, in my to-go bag. And I probably had like 30 copies because we were there so frequently. So people can do this, just go in there and say, I messed up. Can I have another set of papers? So then when we would come in, either by an ambulance or you know, I would drive her in or whatever the case may be, and they're like, Oh, here's your paperwork, we'll take you back. I would just put it on the counter and say, I'm going with her. Because then, you know, they give you 50 stacks and then they ask you on the back, like they give you three lines. Tell me how many surgeries she's had. Um where do you want me to put the rest of this? You know, or what are her diagnoses? Or, you know, has she ever had blood transfusions? Or list her hospitalizations. And I'm like, I can give every one of them to you by memory. I can give you her doses of medication, I can tell you if they're B ID or Q4 or whatever the case may be. I can tell you. And they're like, Well, you need to write it down. None of y'all read it anyway.

SPEAKER_01 50:12

I'm that's why I say I say see attached, and then I give them a while.

SPEAKER_00 50:16

Well, that's that's good. I was gonna say, okay, so it was you, Victoria, that told me that little tidbit about stealing the forms and just having this. But I thought it was Rebecca, but Rebecca also does something that I highly encourage people to do, and you were just alluding to it. Go ahead, Beck.

SPEAKER_01 50:31

Yeah, so I have I have everything that Victoria was just talking about surgeries, like uh diagnoses, like major surgeries, major med changes, because I don't want some doctor telling me that, like, oh, we're gonna put him on refampin' and I'm like, he had an allergic reaction to rifampin. Like, I don't want to try anything that we've already tried and failed. So, like, that's why I put it all there. And, you know, it's it's shape, and I even have a like a little YouTube, a private YouTube link that shows his baseline because like if you look at him and he's sick in the bed, you don't know that he talks and that he walks and that he can do these things.

SPEAKER_00 51:03

Like he sings dirty songs, yeah, exactly.

SPEAKER_01 51:08

Yeah, and so like you know, you don't know, you don't know what he does or who he is, especially because when you read his diagnoses, you think like, oh my gosh, this kid like you know, can't move. And you know, and he very much can do lots of things. So so I think having that spreadsheet, it also takes out all of that like frustrating talk that Victoria was just talking about. Like, oh, I I can't tell you how much that like that just turns my stomach when some some you know young young young lawyer, young doctor starts asking me, like, how what surgeries has he had? I'm like, he's had so many surgeries, that's why I gave you the list. Like, look at his body and you will see he's a wounded warrior. Like he is like he has he has stitches, he has scars from the top of his head down to his toes from all the things that have been done to him. And so if you need to know that roadmap, like then look, look, it's there.

SPEAKER_00 52:06

And it's and and Victoria's brought this up in several conversations we've had with on our on this podcast and on my podcast and and other people's podcasts that we've been guests on. It's maddening that they're not reading what you're giving them, yeah. Or they're not reading what's on the wall that they put there to you know but I send them back out and won't answer the question.

SPEAKER_01 52:29

So there.

SPEAKER_00 52:32

Yeah, if you could just really in in and we don't have much time here left. I just really want each of you to take, you know, just a minute or two and just talk directly to the parents that are you know currently feeling like they're imposters because they're not doing it right, or they're feeling the weight of all this, or they're not stepping up because they

Trust Your Gut And Share The Load

SPEAKER_00 52:55

uh are intimidated. It's an intimidating thing. What would Victoria, what would you what would you say to them? What would be some advice that you would give to them about that that that courage and where to get that strength from?

SPEAKER_03 53:09

I would first tell them to take a second and take a deep breath. Yeah, just take a moment and take a deep breath. And remember, and I say this so many times, that beautiful child that causes some people stress and frustration can still wrap their hand around your pinky, which is how they told you that they loved you the first time and they still love you, and you're their voice, and you're advocating for them because they don't know what's going on, and they are more afraid and more scared than you are right now. And if you have that mama bear gut thing going on and you're questioning something, go with your gut, follow it, you know. Test the doctors. I mean, it where where do you come up with this? Why are you coming up with this decision? Why do you think this needs to be? If you think that they need a CAT scan and they're like, no, I don't think so, push for it. And if they say no, go to someone else. You know, you can ask for whoever's on call to come down. You can push for the specialist because you know, you could say, I'm telling you right now, I'm not prepared to take my child home until X, Y, and Z is done. And I'm not prepared to release you of your liability because you're not doing what is best interest of my child.

SPEAKER_00 54:17

Yeah. That's powerful. How about you, Beck?

SPEAKER_01 54:21

Yeah. So I think that everything that Victoria just said, absolutely. And then I would say that's it.

SPEAKER_00 54:27

You're done.

SPEAKER_01 54:28

Yeah, that's no, I'm not, I'm I'm never done. No, no, you know me better than that, Michael. No, I I think I would say that like you make the best decisions that you can in the moment, you know, with all the facts that you have. And, you know, sometimes they're perfect, they're great decisions, and sometimes they prove out to be a little bit, but you can't beat yourself up over them as long as you do it with the best, trust your gut and make the best decision that you can in that moment. And then, and then don't regret, like, because that doesn't get you. There's there that regret gets you nowhere, you know. And then I just wanted, I wanted to add one other thing, kind of like looping back a little bit, but when we were talking about partners, and I think one interesting dynamic in in partners in apparently, Victoria, maybe you you feel this too, but like it's natural for one of the partners to own the care and the other partner to be the backup. And I think I don't think you can have two be completely owning of the care because it's like it's it's like not possible. Like somebody has to own it. And so, so my husband is really good at like taking him to a doctor's appointment and asking questions or doing certain things if I set it up. But there's only certain things that I have him do. And it's not because I don't trust his ability or his judgment, but I have all of the clues. I I've had all of the pieces, like I know them all. So something might trigger for me that wouldn't necessarily trigger for him, or he might forget to report something to me that's that somebody said off the hand. So it's okay for one of you to own it, like the picture, and the other one to take a back of it. And it's not, it's not a question of ability at that point, it's a question of like how to get the best, the best care.

SPEAKER_00 56:18

And it's really important that that goes to teamwork and and understanding understanding all right, the the hedgehog principle, what you're really good at and what I'm really good at, and let's let's play upon each other's strengths, and not criticize the other one and not make the other one feel like not resent and not resent because I think Mark would get lost in that sometimes, like you know, that's hard.

SPEAKER_01 56:40

I can do this too. And I'm like, this is not a statement about whether you can do it. I absolutely know you can do it. You know, it's just a question of like is this is so complicated, and I've I've got it all like in my head and written down and organized, like it's just easier, like if we if we feed into this model already, kind of thing, and not, you know, and it's again, it's not like an indictment or or a challenge to your credibility. And I think that when you can validate that and say, like, you're hugely supportive, like in so many other ways, in so many ways, you just don't have to do the direct care that I'm doing because like we only need one of us to do that, but we need both of us to do everything else, kind of thing. And I think that recognition kind of takes because otherwise I think he felt he feels a little like not emasculated, but like like superfluous in a way, like not quite, but he's so important to the whole thing, you know.

SPEAKER_00 57:31

He's so that's really that's really that's really valuable for everybody to hear too, because I'm sure, you know, and and this goes right into my what I was gonna say, you know, here here comes my permission slip for everybody, right? If you need to hear it from somebody, I'm telling you right now, folks. It's okay to be tired, it's okay to feel a little guilt. It's okay to have this discussion about I can take a backseat because I know you got this, or you could take a back seat because I have this, and I don't resent, I I appreciate everything else you're doing. So it's okay to be angry, it's okay to be in survival mode because surviving, you know, is also achievement in professional grade. And and as both of these fantastic women have said, your kid needs that from you. Well, I want to I want to add one thing your loved one needs that from you. I'm sorry.

SPEAKER_03 58:28

He's like, oh god. I I want to

Never Give Up Hope And A Big Win

SPEAKER_03 58:30

add one thing. Never ever give up hope. And I tell this to everybody never ever give up hope because miracles happen every single day. And I haven't been able to talk to Mike today. We talk all the time. I haven't been able to really talk to him today, but I have a huge special like announcement, and I'm I'm really gonna like keep it together when I say it. We were told from day one she'd have a feeding tube for the rest of her life. She got rid of it at 16. When we almost lost her, she got it again. They told her she'd never eat by mouth, she'd, you know, failure to thrive, the whole shebang. That she, you know, she's she does have kidney disease now. But this morning, at eight, I mean, we used to go to gastroenterology weekly, and I was on the phone with him twice a week and then seeing him once a week. So we went today. This morning we were there at eight o'clock, and my daughter and him do not get along. Y'all ever heard the story about the nickname Dr. Diarrhea? That's this guy, she calls him Dr. Diarrhea. And we go in there, and he says to her today, I don't have to see you anymore. You're done, you're out of here. And she was like, What? And he was like, You no longer need a GI doctor. And she goes, Are you kidding? Like in in this, because we were told she'd be fed through a tube her entire life. She'd never sit at a table and enjoy a meal, she'd never be able because she aspirated on liquid. You know, she's had two fun duplication nie since done. She's had pyloroplasty, she's had it all done. So we're sitting in there today, and she looks at me, and she was like, Thank you, mom. And I went, wait, what? And she goes, because if it wasn't for you, I wouldn't be here today. And I was like, No, no, no, no, no, no, no, no, no, no, no. This is a team effort. This is us, this is the two of us together. You're amazing. I'm so proud of you. And Faith is a little prankster, she's a little smart mouth, and she looked back at the doctor and gave him the finger and told him to eat. And he was like, I guess we'll be here if we ever you ever need us. And she's like, We won't, and gave him the finger and out we went. And she was like, I'm done. I graduated, I never need GI again. So you got to keep the hope up, right? And this was like eight o'clock this morning. I fought Atlanta traffic for two and a half hours to get there. And it was literally like we just grabbed each other and was holding each other and so happy because nowhere in this journey did we ever think that this would happen. Ever. And now all of a sudden, now you hear you don't know.

SPEAKER_00 1:00:57

That's amazing. Dr. Diarrhea brings some good news to so don't give up your hope. But but you know what? I will I will second her her emotion and say thanks to you, thanks to you both for your radical honesty, thanks for proving that even when the system's broken, caregivers remain unbreakable, right? And and you guys have implemented your own survival tools. You shared some of

Final Takeaways And Sign Off

SPEAKER_00 1:01:25

them here with with everybody today, and hopefully people can learn from you and be inspired by you, like Faith is and like G is, and like your husbands are, and like you are to so many people. So, everybody, thanks very much for listening to This Is What It Takes. Remember, you're not just holding it together, you're building the path for those that are coming behind you, and that includes those little kiddos that we just got done talking about. So, thanks again, guys, for being here. Well, Victoria, you don't have a choice. Rebecca, thank you for being here.

SPEAKER_02 1:01:59

Rose Tim on another one? Can you and I just absolutely I can go way back.

SPEAKER_00 1:02:07

All right, you guys, thanks very much, and everybody, good night. I hope you enjoyed this this episode.

SPEAKER_02 1:02:12

Thanks, guys. Thank you. Thanks.