Waterfall Rupture: Nina Scherenberg on Motherhood, Disability, and Survival

In this episode of Rupture, host Wendy Lurrie welcomes back Nina Scherenberg for an intimate and devastatingly honest conversation about what happens when one rupture becomes many.

After a traumatic birth, Nina sensed something was wrong with her newborn son, but her concerns were repeatedly dismissed. Days later, she learned he had suffered a massive ischemic stroke that destroyed much of the left side of his brain. That diagnosis was only the beginning.

Nina shares the cascade that followed. NICU uncertainty, infantile spasms, frightening insurance hurdles, early intervention, invisible disability, public misunderstanding, caregiving isolation, and the emotional and professional cost of holding everything together as the sole reliable parent.

This episode explores:

• what Nina means by a waterfall rupture
• the shock of becoming a special needs parent overnight
• how systems assume support that often is not actually there
• the invisible labor of managing disability and caregiving
• what happens to identity and career after a life-altering medical crisis
• the emotional complexity of parenting a child whose future remains uncertain
• why self-advocacy becomes survival
• what Nina wants other parents to know

It is also a story of profound tenacity. Not only Nina’s, but her son’s.

Watch the full episode on YouTube: https://www.youtube.com/@BestGuessistan

Subscribe to our Substack: https://bestguessistan.substack.com/

Follow us on Instagram: https://www.instagram.com/bestguessistan/

Join the conversation on Facebook: https://www.facebook.com/bestguessistan/

Transcript

SPEAKER_01 0:00

Okay. Welcome back to Rupture, the world of Best Guessistan. I'm Wendy Lurie. Not all ruptures arrive at once. Some arrive as a waterfall, one triggering the next, triggering the next, triggering the next. There's no pause between crises, just escalation. Waterfall rupture doesn't just multiply difficulty, it strips away recovery time. This episode explores what happens when responsibility keeps arriving faster that it could be absorbed. Nina joined us recently to discuss the rupture of chronic illness, specifically lupus, and what that revealed in terms of systems failures, and what it took in terms of her own efforts and self-advocacy to get out of a system what the system wasn't designed to provide. But in that conversation, Nina mentioned that this was not her first rupture, nor her most profound. That one came with the birth of her son 10 years ago, and set in motion what Nina and I have agreed to call a waterfall rupture, when one rupture leads to another and another and another, like a chain reaction. And what that does to every aspect of your life, the system's failure is revealed by all of these ruptures and what it really, really took to get everything that she needed for her son and herself again out of systems that weren't designed to deliver them. So I've really been looking forward to this conversation. And welcome back, Nina. Welcome back to Rupture.

SPEAKER_00 1:45

Thank you, Andy. I can't believe we're doing this a second time. We're doing this a second time.

SPEAKER_01 1:49

We're doing this a second time, but with a very different story.

SPEAKER_00 1:52

Yes, yes. And it's, I would say a more complicated and uh it's a harder story. One of the Yeah. So I've you know, I've had regular life, regular career. You know, I was I was self-employed, working lots of hours, but able to work from home. And I was finally at a point in my relationship where I was like, okay, ready to try and have a child. The pregnancy was relatively uneventful, you know, like you're preparing for like, you know, the new life with the baby, like you're gonna have sleep-deprived nights and da-da-da, you know, like you're trying to like figure out all the best things you're gonna need for your kid, like all the regular stuff, you know, getting the nursery ready. And, you know, I had bought like one of those like angel care monitors, like to monitor the kid in the sleep, but then people were like, no, you're just gonna freak yourself out. I send that thing back. And then I was I was flaring up during this pregnancy. Now, it's a throwback to the lupus time. I asked my doctors if this could be an autoimmune reaction to the pregnancy, and they all brushed me off. Turns out in hindsight, guess what it was? You were right. So I had nerve pain, I had water buildup, like it it was it was not great, but the baby was healthy the whole time. He I went into labor a week before my due date. It was a harsh delivery. 13 hours pushing, pushing, he didn't fit. I ended up calling an emergency C-section after four hours of pushing. And then, you know, when he came out, I was exhausted. I was shaking because they hopped me up with lidocaine to a point where I was literally had the shakes like a fish out of water. But I was happy my kid was born, he was beautiful. Then the first night when I was in the hospital room with him, it just felt like something was off. Like I could hear babies crying up and down the hallway, like screaming, and my kid barely whimpered when he needed to be changed or when he was hungry. And he was very weak, like he couldn't latch to breastfeed. And on the first day I noticed he was very shaky, but he also did this weird thing where he would turn his head all the way to one side, look all the way up at the ceiling, and open his mouth, and have his mouth open and stare at the ceiling. And I was like, this doesn't seem right. Like, it's just off. So I asked the attending doctor, could this be some sort of seizure symptom? And she brushed me off. She was like, Don't worry, the shakes are gonna go away. It was a harsh delivery, he'll be fine. Okay. The shakes went, started getting better, and but this became more pronounced and very, very visible, and I kept asking about it, and they kept brushing me off. It's acid reflux, it's this and that, just I'm a new mom, I have no idea what I'm talking about. On the third day, I brought it up again to the attending doctor as they were signing the release papers, and the doctor told me, Well, I'm gonna send the lactation consultant. They'll check him out. It's probably just heartburn. It's probably, you know, he was, you know, squished in the womb, whatever. The lactation consultant came in and took one look at him and was like, that's not heartburn. So she ran out, they sent me to get my mommy massage, and they were like, We're gonna check him into the nursery, and when you come back, we'll tell you what's going on. I did not have a relaxing massage, and when I came back, they immediately escorted me into the NICU. My kid was hooked up to every monitor, to every cable, full head of EG, because the second they put him on a blood oxygen monitor, all the alarms went off because he was having apnea episodes. Which turns out it's a sign of seizures in babies. So they kept them in the NICU overnight and they told us they were going to do an MRI in the morning. They suspected that he had a brain bleed from the harsh delivery. So they let me stay in the hospital one more night. And then the next morning at nine, we went up to the NICU, and the door opened, and every single specialist they had in that hospital walked through the door. And the child neurologist, the pediatric neurologist, came up to us and she told us, I am so sorry, your child had a stroke. He had a huge ischemic stroke, meaning an arterial stroke. And she put the MRI of his brain on the wall. The entire left hemisphere of his brain was gone. And there were dead pockets on the right. She's like, This was a massive stroke. He's lost almost the entire left hemisphere of his brain. There are pockets on the right that are dead. We cannot tell you what this means because every child develops differently. And we were sitting there, it was like running headfirst into a brick wall. Like it completely blindside. You go from having the regular worries of like, you know, is my kid gonna sleep through the night? Now these doctors are sitting there calmly trying to tell us that we don't know if your child will walk, talk, see, sit upright by themselves. We have no idea. And yeah, it was that is the the waterfall. Like you're in calm waters, you're expecting some turbulence, and then suddenly you're just over a cliff, don't know where upside down is, you just you can't breathe. It was horrifying. Now they tell you, you know, baby's brains develop, stuff heals, but you know, it's dealing with a lot of damage, and every child has a different outcome. The smaller the stroke, the better the outcome. So my child was in the NICU, and nobody told us how long he was gonna be there. Nobody told us exactly what needed to happen for us to take him home. How can we take him? We had no idea. We weren't allowed to stay in the hospital anymore. So every single day I came to the hospital at 8 a.m. I had a C-section, so like I could barely walk upright. But the first few days, my partner drove me to the hospital. And then as soon as I could walk, I drove myself and stayed with my baby all day and just held him, watched over him, and got more and more frustrated because nobody would really tell me. Like, is it gonna be three months? Is it gonna be three days? There was it's always like the doctors talk to each other and they know what they're doing, but nobody talks to the parent.

SPEAKER_01 8:19

How I finally made it. How long was he in the NICU?

SPEAKER_00 8:22

In total, 11 days. And it was mostly because I basically grabbed one of the nurses and I was like, I want to talk to the attending doctor. I want to talk to whoever is making the decisions here because nobody's telling me anything, and this is ridiculous. So finally that afternoon, the attending doctor came and he was like, What do you want to know? And I was like, I want to know what needs to happen for my child to come home. What are the next steps? So he told me the main thing is we have his seizures under control with medication. He needs to eat by himself because they had to give him a feeding tube. He's like, if he can take every bottle by himself for a day, he can go home. And I was like, okay, now I have something to do. Like, thank you. Could have told me this on freaking day one because I'm just sitting here, useless. So I was like, okay, now I have a job. And I worked with this little guy, and within one day, he started drinking by himself. And then they were willing to release us. At this point, I had already reordered this angel care monitor because I was like, guess what? My child now has sleep apnea, and it's terrifying. And he could have died in his sleep in this little cot next to me, while they thought, told me everything was fine, and my kid was literally holding his breath at night. It was terrifying. So, monitor under the crib, and you know, then they hooked me up with social services, they hooked me up with early intervention, which thank God, Jersey is a very well-equipped state when it comes to healthcare. It's still not great, but it's better than a lot of others. So almost right away, there were, you know, therapists coming to my house to help, like physical therapists to help, you know, work with him. And at the beginning, it's as simple as like, you know, working with tummy time and massaging him and stuff like that. So there's a bunch of different facets to this disability. One of them is the physical aspect, because he has the stroke on the left side. He has very, very reduced nervous function on his right.

SPEAKER_01 10:25

So it means what? Explain what that means.

SPEAKER_00 10:27

He basically has cerebalsy on the right side of his body. So the left side of his brain has so much damage that there's just sparks flying around. There is white noise going on. So that side sends bad messages to the right side of his body because it's cross-connected. Which means if he didn't have physical therapy, his hand would be like curved in like this because the muscles get the signals of contract, contract, contract. So all the muscles on the inside of the hand want to just tighten up. So a lot of the physical therapy is the stretches, putting weight on the hand, you know, working with the fingers so they can open and close. And the same thing on his leg. His leg wants to turn out and in. And because the Achilles wants to tighten, these children end up on tiptoe with their knees bent, they can't straighten out their leg. So there's a lot of stretches. There's a lot of, you know, like putting weight on the hand, on the hand and on the foot to like get those big muscles developing. His right side still develops shorter, like slower than the left. So if you put his hands together now at 10 years old, his right hand is that much smaller. His arm is shorter, his hand is smaller, like noticeably smaller. His foot is not much smaller because he's putting weight-bearing, you know, like impact on it. So the the growth is still happening. A lot of children have a disability, like a lot of kids with hemiplegia, which is what his official diagnosis is, have different lengths and legs. They have to have leg lengthening surgery, or they have to have a blocker put into the growth plates of the opposite leg so the hemi-leg can catch up. Many have to have tendon lengthening surgery to extend the Achilles so they can even put their heel down again. It's what it is.

SPEAKER_01 12:14

Well, so let's go back to so you're 11 days, you've just had a C-section. Yep. You have a baby who's had a stroke. Yeah. With all these issues that you haven't even begun to really tackle. You don't have family here, right?

SPEAKER_00 12:29

Well, at the time my mother was here. At the time my mom she was on the visitor's visa, so she had to go back and forth. But during the birth of my baby, she was here. And after I brought Andy home, she was there to help. And it was wonderful. It was very, very helpful. So the for the first, I would say like four months or so, she was still here, which was a godsend, because that didn't really help much.

SPEAKER_01 12:52

Well, I was gonna ask you about that. I was like, so you there was the baby's dad was in the picture, right? Yes.

SPEAKER_00 12:58

Mm-hmm. Baby's dad was he had made me a lot of promises about, you know, being there for his kid and everything. He I don't think he could cope very well with his son being special needs. He uh treated it almost a little bit like an inconvenience. He didn't come to a single doctor's appointment, he never met the therapists, he didn't want anything to do with the d like with the disability side of his child's life. He really wanted a happy, healthy boy that he could kick a ball around with, and but he didn't want to so he wasn't a help at this point. I I was working full-time because I was the only breadwinner. He did not have a job at the time. But I had to hire babysitters in between to look after my kids, so I had some pockets of quiet to do my job. Yeah. So he wasn't very helpful. And and he was doing good. You know, I there's a lot of there's a lot of small things that make life harder. He didn't sleep right. He was, you know, he was cluster feeding the for first week, so I got like an hour of sleep a night. He had acid reflux, he screamed for an hour every time before he went to sleep. You know, I had to give him meds with, you know, every bottle of milk basically. But that all became part of the routine. You know, it's like you have to compartmentalize and adjust. This is the new normal, this is the routine we have, and you know, I figured out what worked and what didn't work for us.

SPEAKER_01 14:29

So things were asked you. Yeah. So like if you can, I mean, all of a sudden, basically overnight, you become the mom of a special needs kid, right? Yeah. A partner who isn't really there, old bred winner, the only one who's going to figure out all the medical, all the administrative, all everything. So, like, what is that like? That's the waterfall rupture. It's happening on every front.

SPEAKER_00 14:55

You're basically, you know, you get dunked over a cliff into the deep and tumbled around, you're gasping for air, and when you come to the surface, all you can think of is just stay afloat. There's a there's a really great, weirdly enough, in a Disney movie. Frozen 2, there is a scene when Anna thinks that her sister has died, and there's a song called The Next Right Thing. And it is a perfect description of what you do. You have all this grief and all these emotions and all this uncertainty, but you still have to function for everybody else. And in my case, especially my kids. So all you do is you concentrate on the next thing that has to be done, the next right thing that you have to take care of. And you just do one step at a time and you try to block out all the emotion and all the other crap that wants to well up because it is not helpful. You're still gonna have your breakdowns in the like late night hours, but during the day, you're literally just gonna concentrate on, okay, I have to call this doctor, I have to figure out this medication, when can I plan this therapist? You know, like I have this part of my job that has to be done here. How can I make that? That is all I was doing. Just the next thing, the next thing, the next thing, and just trying to keep afloat, basically. Yeah. Then, as it is sometimes with waterfalls after the first one, there could be a second one. Let's talk about it. And in my case, when my kid was five and a half months old, now we were doing EEGs like every couple of months to check his brain. Our neurologist had warned me that we had to look out for what is called chaotic brain waves. Because he was at high risk for a secondary issue called an infantile spasm or infantile spasms. And at five and a half months old, she she ordered the EEGs a month early because normally it would have been a six months EEG, but she was suspecting this. His brain waves came back chaotic, and I started noticing these little things where like he would wake up from a nap and his right hand would come up. And initially I was like, oh, that's great, because like his right hand didn't have a lot of movement. I was like, oh, he's discouraging his right hand. But then I found out that those are the first symptoms of infantile spasms. So infantile spasms are a nasty seizure disorder that can happen to children between four and eight months old. And children with brain damage are predisposed to get not everybody gets them, but quite a few get them. And the problem with these spasms is that when this kind of seizure happens, it doesn't happen and then you're groggy after. It erases your brain cells as it happens. It destroys your brain. If that kind of disease is not treated, if this disorder is not treated, the child will end up a vegetable in the wheelchair. They will lose all control over everything. So we went, and here's the kicker. There's only one type of medication approved for treating this. It's almost like a chemotherapy. It's a really, really harsh steroid. It is one of the most expensive meds you can get. And the insurance will only approve usage of this medication if a spasm is caught on video EEG.

SPEAKER_01 18:21

Really?

SPEAKER_00 18:21

So they made it.

SPEAKER_01 18:23

You need to provide documentary evidence of this to get the medication.

SPEAKER_00 18:26

You have to provide documentary evidence of a spasm on video and on the EEG at the same time to get the treatment approved. So my neurologist literally told me we had to wait until the twitches that come with these spasms are bad enough to be caught on camera. So I am watching my child, like he would wake up and then he would literally, the arms would go up and his head would dip. Like he lost control of his neck muscles and his eyes would roll up. So I finally caught a spasm bad enough on camera, and my neurologist was like, Yep, we're good. Go to the ER. They will check you in, they will hook you up to the EEG, and you know, we'll figure this out. And the next morning he woke up, he had a spasm on video EEG, and they approved this medication. Now, at the time, I didn't know much about infantile spasms. Like, you know, just yes, this is bad. Yes, it has to be treated. When they signed me up for this treatment, it's called ACTH. A vial of five milliliters cost $26,000. My child needed two and a half vials for his treatment.

SPEAKER_01 19:36

Two and a half vials per like for the whole treatment or the whole treatment, yeah.

SPEAKER_00 19:39

But still, then at the at the hospital stay, I think. The math was it was thank god I have insurance. That's the math, basically. Otherwise, bankruptcy the whole lanyards. So the first night they gave me this pamphlet for ACTH, like, oh, read up on this, ta-la-da. So it says like it is proven to help with infantile spasms. It has also shown to be beneficial for children with underlying conditions such as brain damage or stroke. It didn't say it is proven to fix this for children with stroke. So I'm sitting in this hospital bed with my child hooked up to all the monitors at night. And because none of the doctors would talk to me and really explain to me what was happening, my neurologist, who is a fabulous neurologist, has the worst bedside manners on the face of the planet. I sat her down and I told her, I was like, Can you tell me that there is a chance he's going to be okay? And she wouldn't commit to it. He could not open her mouth and said that there's even a chance he was gonna be alright. So at 11 o'clock at night in the dark, while I'm by myself, I made the mistake to Google pediatric stroke and infantile spasms.

SPEAKER_01 20:57

Dangerous to hit Dr. Google at that time of the day.

SPEAKER_00 21:00

The horror stories? I that I didn't I didn't lose it like this when my child was diagnosed. But that night, full-blown panic attack. Because when you read stories like, well, he'll never walk or talk again, but at least we still have his smile. I just I didn't it like it it was just I was I was done. The next morning, I got very lucky. The head of neurology from the hospital came for the rotation because every the rotation was not only my neurologist, it was whoever was on call because it was the children's hospital. So it happened to be the head of the of the uh neurologist department, and he's, you know, veteran in the field. So he's checking my kid out. He's all chipper and cheerful, and he's like, looks great, dah dah dah. Is there anything you want to know? And I was like, yes. I was like, please, can you tell me if there is a chance that after this my child can have a regular life, like some semblance of a normal life? And he looked at me and he was like Absolutely. I was like, okay. He's like Can children that have infantile spasms lead a normal life afterwards? Absolutely. Can children that had a stroke and have infantile spasms lead a normal life? He's like, absolutely. It was like, I just gave a symposium in infantile spasms. And the medicine and the therapy has gotten so good that in most cases your child will be able to lead a happy, productive life. It's gonna take a lot of therapy, it's gonna take hard work, but absolutely. And I still remember it felt like somebody lifted a thousand pounds off my chest. It was what I needed to hear to have some sort of hope at that point, you know. So we were in the hospital for five days. We had to wait for the insurance to approve this treatment. They already started treating him because he went through the ER, they were able to give him this medicine. And after five days, the insurance company approved this. So I had to learn how to inject my six-month-old baby twice a day with a gel. We had to inject him in his leg, the biggest muscle, because it was like a gel. I had to warm it up with my hands, draw precise measurements out of this tiny little five millimeter vial. I had like, you know, the needles laid out. I had the gauze and everything laid out. We had a visiting nurse coming every day to check his sugar, his urine to make sure that, you know, he was because there was horrible side effects that can happen with this. I had to keep him in a bubble because this basically erased his immune system. He got the full moon face that you had from chemotherapy. He lost his speech. He had already started saying like single words like mama, blah, blah, blah. Didn't make any more sounds. Like after the spasms, he was just he would cry, but there was no semblance of speech whatsoever. So I didn't know, like, is this gonna come back? Or did he lose that part of his brain during the spasms? Like, it took another two months and then he started babbling again, and then he started getting better. But yeah, the first two years of his life, I didn't have a life. I didn't travel anywhere, I didn't fly to see my family. I was just How could you there with my child. How could you?

unknown 24:22

Yeah.

SPEAKER_00 24:22

And is dad still in the picture at this point? At this point, yeah. He had dad gotten drunk and gotten in his truck and wrecked himself when I was five months pregnant. Ended up getting all the tickets, and finally, when Andy was, I think, four months old or so, he had his court date and lost his license. So while I was in the hospital with my child, Dad didn't wasn't there with us. He didn't come to the hospital with us, he didn't come to visit. I told him he could take a cab. He had my credit card, but he didn't like hospitals. So the only time he came to the hospital is because the insurance, the medicine that we needed, was sent to our house, and he had to bring it to the hospital so we could learn how to use it, and then we were allowed to go home with our kid. That's the only time he came, just to bring this medicine. He refused to learn how to administer the injections, so I had to do it myself. And he had to hold Andy down because he had to be still for this, but he refused to learn how to how to do the injections. Even though I was like, what happens if I can't one day?

unknown 25:31

No.

SPEAKER_01 25:33

While you were there, let me ask you a question about that. Excuse me. How many of the systems that you had to deal with basically expected there to be two parents around, just in terms of two people to share the load? Pretty much all with that, or did they assume it was just you?

SPEAKER_00 25:48

I think pretty much all the systems are set up for two parents, especially for young babies. There's not a heck of a lot of support. Like there was no transportation I could fall back on to get to and from the hospital. The hospital didn't offer me a bed to stay with my kid. And yeah, the reason why I started driving myself after, even after the C-section, is because Andy's father didn't really like feel like driving in Osh hour. He didn't, you know, he he didn't want to deal. So he was like, I'll pick you up at four. And I'm like, no, I want to stay with our kid the whole day, you know. So I on the on the first day we got the diagnosis, and I he left at some point and he was supposed to come pick me back up. And the next day he was supposed to, like, he brought me to the hospital, stayed for like an hour or so, and then he left. He was supposed to get me back in the evening. He called me and told me, oh, a bunch of our friends have come to celebrate, and I was and our buddy offered to send to to pay for a cab for you, so I don't have to come and get you. And I was just like, Oh, okay. Like, this is two days after our child was diagnosed.

SPEAKER_01 27:04

And sorry, I'm so outraged on your behalf, I can barely contain myself.

SPEAKER_00 27:08

So I'm like still like at this point, I'm still shell-shocked, like, from the diagnosis and everything. So I ended up coming home at like 8 30 at night, and there was a barn full of people drinking and partying. And one of our friends, the friend that had offered to send a cab for me, his wife came over and she's like, How are you doing? And she looked at me and she's like, You're not okay. And she just gave me a hug and I just lost it. She has a special needs child, so she knew.

SPEAKER_01 27:34

She got it. She got it.

SPEAKER_00 27:35

She knew.

SPEAKER_01 27:35

Yeah.

SPEAKER_00 27:36

She knew, and I just I needed that. But yeah, so I there wasn't a lot of support. There wasn't a lot of emotional support. There wasn't a lot of like physical do things support happening. All the doctors' appointments. I I took my kid to all the specialists, all the things during work hours. I was very lucky that I could make my own hours. And my boss was wonderful. He found out what happened, and he basically told me, just charge for the days that you're out. Because I was, I'm a freelancer. I don't get paid vacation. So he's like, just charge for the days. I don't care. We're not gonna say anything. Just we'll pay you, you know. So that was a relief because I didn't have any more time that I could take without, you know, having financial issues. But yeah, my mother was a great support.

SPEAKER_01 28:25

What about we talked a little bit when you and I were catching up about this about a sort of general sense of abandonment?

SPEAKER_00 28:33

Yeah.

SPEAKER_01 28:34

That was coming from multiple places. Can you talk about that?

SPEAKER_00 28:37

Yeah. Well, it's there's no setup for this situation. There's no support system for somebody in this situation. Now, I'm lucky. You know, like I've said that in the last interview with the lupus, but with this, even more so. Like, I'm lucky that I get to make my own hours. I'm lucky that I work from home, that I'm able to somehow manage these two things without losing my job. But most people don't. There's no government setup that allows for you to take like time off to look after your child and it's paid. There should be there's unpaid family leave.

SPEAKER_01 29:13

There isn't paid family leave. Yeah.

SPEAKER_00 29:15

And when you have a situation like that, that should be part of a social safety net. You know, like your child is sick, you shouldn't have to lose your job over it. You should be getting the support, you should be getting the visiting nurse service, you know, you should be getting, you know, respit care, like a babysitter that will come so you can take a breather. None of that happens. The the only luck I had was that I make good enough money to pay a babysitter. So I could take a breather and maybe go to the pharmacy to pick up my kids' meds without having to load them in the car. You know, simple stuff like that.

SPEAKER_01 29:48

Very simple. Right. That's not going off to Tahiti for two weeks, hardly.

SPEAKER_00 29:52

Nah, nah. That was I I would literally, I was I was in a house where I had a lot of like open space overhead, and I would look at the planes going by. And I was getting like that that that like fanve is what we call in Germany, like that, that that desire to get over. Wanderlust. You know, yeah, Wanderlust, yeah. Because I'm like, I haven't seen my family in Germany in forever. I haven't been on a plane in forever. You know, I was itching to just go somewhere, but I was stuck. And on top of that, when you if you have a social circle set up before this kind of thing happens, like really good friends that live nearby, your family unit, it makes it a little bit easier. But if you do not have that, you're completely isolated with your kid. Like we had some friends, but they were all they didn't have kids, they wanted to hang out and party. So there was nobody that wouldn't just come over and hang out with me and my baby. I was just me and my child all the time. And, you know, my my ex would go over to our neighbors to go drinking in the barn, and I would sit home with my kid. You know. There was no other family with young children on our block. I ended up joining when Andy was old enough to like go back out and he was done with the chemo treatment. I joined Saturday Playgroup just to get out and meet other parents. I'm still good friends with one of the moms I met and with their children, but I had to physically seek out other people because nobody around me, like my girlfriends that live all the way up in Westchester, they would come visit because they knew I couldn't come to them. But they all sort of have lives, they live far away, it's not that easy, you know. And I think in that moment, not having a family close by was very hard. It was very, very hard. And it was isolating for sure. Yeah, so it it wasn't easy.

SPEAKER_01 31:45

No, it just takes an incredibly difficult situation and just adds extra layers of difficulty and complexity.

SPEAKER_02 31:51

Oh yeah.

SPEAKER_01 31:54

There are a lot of places we can go from here, and one is just all the therapies he needed and like all the stuff you have to do.

SPEAKER_00 32:00

So can you just I can I can quickly touch on that? Yeah, that would be a good thing. So the little dude, he is developmentally delayed, speech delayed, physically delayed, social interaction is hard for him. But when he was young, physical therapy, speech therapy, occupational therapy, each therapy talked two times a week. So there were six therapy sessions a week happening in my house. Fortunately, early intervention is a great system in New Jersey. They they did the initial evaluation, like they hooked me up through the NICU with them already. And because my child has an undisputable diagnosis, that was one of the lucky things. Sadly enough, because his diagnosis was so bad, it was no problem getting services because nobody could look at an MRI and say, yeah, no, he's fine. That part I didn't have to fight for. That was literally like, okay, you're qualified for all the everything. A lot of people with autistic kids are not that lucky. They have to fight for services. That was one of the few things I didn't have to do. I was deciding.

SPEAKER_01 33:00

What did you have to fight for? Huh? What did you have to fight for?

SPEAKER_00 33:03

Oh God. It's not so much fight, it's more trying to figure out how to provide. Like, you know, how do you provide a normal environment for a kid like mine, you know, who doesn't play on the same level with other kids? You know, like I had to learn that he does better playing with smaller children because they're developmentally on the same age line, you know. I have had to completely change the way I thought I was going to parent. You know, I was a kid that ran through the woods and built forts and like, you know, did like Gen X, you know, on the streets till the streetlights came on. And I fully expected my kid to be like out in the woods climbing and building stuff, and instead I've been forced to be a helicopter parent. Not by choice, but because my kid can't walk probably. Yeah. Like my child learned how to walk independently. He didn't crawl until he was 14 months old. He figured out how to crawl at 14 months old. He started taking independent steps at 26 months old. And it took until he was about six before I could let him walk without worrying that he was gonna just stumble and fall. Because his right foot drags. So he will catch his toe and wipe out. The amount of scars he has on his knees from falling down.

SPEAKER_01 34:25

I can imagine.

SPEAKER_00 34:27

So a playground, something that is so fun for most kids, where like most parents can stand and chit-chat with other parents and make those connections. I was the parent who was crawling through the playground with my child until about two, three years ago, because he couldn't do most of the things. He can't do the monkey bars, the balance is hard. His right hand, like now he's getting better of like making it grip, but if he looks away from his hand, his hand will just let go. So like the simplest thing on the playground are dangerous for him, but he wants to go play. So I'm the parent who's literally climbing after my kid, ducking through these playground structures, trying to make sure he doesn't fall, trying to make sure he doesn't slip. And I don't get to just do the normal parent thing.

SPEAKER_01 35:15

You know, that's not available to you.

SPEAKER_00 35:19

His speech is very delayed. One of the things that happened is the speech center in his brain is affected. Now he has speech, but he has a hard time finding words. It's almost like aphasia, but it's not degrading. It is slowly coming back. So like he's almost starting with aphasia, and then his brain is developing away from it as it's growing. So for a while, he is very much repeating a lot of things that are said, and what he'll do is he'll use full sentences or words that he's heard, and he will use them with the same inflection in the same context that he's heard them because it's easier for him to access that choke. He'll use a lot of words and sayings that he's heard in his movies over and over again, and I get my own words back at me with the same inflection in the same situation. And sometimes I'm just like, oh sh.

SPEAKER_01 36:19

They know they they know how to push your buttons, they always do.

SPEAKER_00 36:22

Yeah, yeah. I I still remember the first time I heard because like every so often he would be a drama queen, and I'm like, come on, don't be such a baby. Like, just you're you're fine, you know. And then he was playing with a little friend of his, and something happened where like she slipped and like you know, started crying, and he's like, Oh, you're fine, stop it.

SPEAKER_01 36:41

And she's just like, wonder where he heard that from.

SPEAKER_00 36:46

So hard because I was like, you was you was perfectly accurate because she was being a drama queen, but like the same inflection that I used, and I was like, Oh crap, I'm gonna have to really watch my words going forward.

SPEAKER_01 36:57

You don't really do. The other thing you'd mentioned when we were talking was, and this has come up in a lot of the conversations we had about people going through different kinds of rupture, is his disability is mostly invisible, right? Yeah. So, like, what what are the implications of that?

SPEAKER_00 37:10

So hemiplegia is often called an invisible disability because if you see my son, you can't tell. Like his face does not look like he's a disabled child. He his mannerisms don't necessarily look like he's a disabled child. Yes, he has a brace on his leg, but most of the time people don't pay attention to that. And he doesn't always wear it. Like when we have a short outing, it's not there. But what happened is he has behavioral issues. Like this disability doesn't just come with the physical, which would be annoying but easier. But a lot of behavioral issues. He gets sensory overload. When he was three years old, he would have screaming tantrums because he couldn't self-regulate. He didn't have the speech to express what was wrong, so he would scream and kick and bite and everything. And it was heartbreaking to see. And it was terrifying because I didn't know what to do. I figured out, I found this amazing website. It's called Positive Parenting Solutions, and it taught me a lot on how to, you know, be calm and how to recognize what he needed in that moment. And one of the things I recognized was that there was nothing I could do with discipline that was not gonna register in his brain. So I've come, I came to realize that what he needed was calm and he needed reassurance. So when I started seeing him screaming on the floor and kicking, I would be like I'd go down to his level and be like, baby, are you okay? Do you need a hug? And nine times out of ten, I would get a sobbing and then just grab him, pick him up in my arms, and just walk around, rock him, and then he would get better. But in public, when people see a child grabbing things that he isn't supposed to, being allowed, like he'll be like, like he would stand when he was little, he would stand and he would throw pebbles in the water for an hour, just shucking pebbles. It was his happy place. It's kind of a stimming activity because he has some autistic traits. Or he would just have a little shovel and throw snow in the air for an hour. And he would do stuff like tapping on stuff or drumming on stuff, or sometimes he would get loud and overbearing. Other parents just see a brat and they will judge you as a parent because they think that you're a shit parent, because your kid is acting out and you didn't teach them right. There's been times when like I had to. Another thing that also kind of happened is for the longest time I did not want to admit to myself that I have a fully special needs kid. I'm like, he seems fine, he walks fine. I felt guilty using infrastructure built for special needs. I didn't think that I deserved to have a handicap plaque to park closer, even though my kid gets exhausted when he walks longer. I did not, you know, I stood in line with him on rides at the at the theme park. And then we had to leave because he would get overloaded. And then finally coming to this realization that no, we deserve to get this extra help. You know, like it's it's something that gives us a tiny little bit of relief compared to the crap we have to deal with. But because he doesn't look special needs, sometimes I still get stick eye. One time we were going on a plane, and I take him to the early check-in because he gets sensory overload when we're in the big crowd and I'm trying to juggle him into a chair, it's not good. So I go on the plane first with him so I can get him situated. And this one person like loudly, like, didn't say anything to me, but like loudly commented, like, oh, I thought it said small children only, you know. And I turned to him and I'm like, Yes, and disability. And he shut up real quick. But I was steamed, I was angry because I was like, you don't know what somebody else's situation is. You know, so maybe keep your mouth shut, dude.

SPEAKER_01 41:00

Well, and in a lot of ways, that's kind of the part of this podcast, anyway, because like I said, most of the ruptures are invisible, and you find out when you start having conversations with people how much they carry and how little is understood, like how little we all know about what's going on in other people's lives. Yeah. I wonder what you for a second, though, okay. So you've gone through this. You have a special needs child, you're getting doing everything you can to make sure you get all the resources. You are the sole breadwinner, you're the single mom. Your career is I understood, it was like moving up like upward trajectory. Like, what happens to you and your identity, uh, of which career is a part? Like, talk about you and this and how you felt through this.

SPEAKER_00 41:39

At the time when it happened, it didn't really sink in. But a couple of years later, I kind of realized what had happened to me as a person, to my identity. Before I had my kid, my career was doing this. Like, I had a ton of freelance clients, I was making great money, I was on photo sets, I was, you know, I would travel to photo shoots. I it was amazing. Like I worked for a celebrity retoucher for like I got to meet some celebrities, I worked for fine art stuff, I got recruited for the job I'm still at. So I had a lot of irons in the fire and kind of felt like Superwoman. Like everything was going great. Then while I was pregnant with my kiddo, I still had a couple of freelance clients, but my main client was taking over most of you know my time, which was fine because it was security. I found out that my main client was going to move out of Jersey and was going to shift the headquarters down to Georgia, and they were probably going to let go everybody that worked for them. And they were going to do it the month I was going to give birth to my son. And the level of stress from that being the sole breadwinner. Now, at the time I was just pregnant, I didn't know about the special needs part. Finally, I found out that my boss and some of the creative team was going to be transferred to an ad agency that had already done some advertising. So my boss spent months basically convincing them to bring on most of his team. Now, my son's birthday, he was born in June. I found out the December before about all of this. It took until May for me to find out that I was keeping my job. They forced me to take a pay cut of 25%.

SPEAKER_02 43:21

That's huge.

SPEAKER_00 43:22

When I signed up with this ad agency. And before I had been a contractor. This is I work for Mercedes-Benz. I'm I'm one of their retouchers. Oh, better, I'm the senior retoucher for Mercedes Benz. Adobe-Wan. Adobe-Wan. Yes. My celebrity photographer dubbed me that. So I found out that they would sign me up, but they would force me to take a pay cut. And they were only letting me charge 40 hours a week instead of however many hours I wanted before. So it was a huge pay cut. I drove into the city to sign the paperwork on a Thursday, nine months pregnant.

unknown 43:59

And for

SPEAKER_00 44:00

Friday night I went into labor. That's how long it took before I knew that I was still gonna have a job. And uh yeah, the plan had been to like take a week off after I gave birth and then start, you know, working again. And then everything just happened. But looking back, I have not been able to change jobs, to change careers, because I'm always the one who pays for everything. I have not been able to risk trying to advance my career at the cost of maybe not having a job or maybe having to take a pay cut or anything, you know. So I'm very lucky that I have this job. I love the team I work with, I love what I do, but I haven't had a raise in 10 years because I'm a freelancer. My costs every year have gone up, and I have not been able to recruit other business because I have no life. I have no free time to go and promote myself or do anything. You know, so I went from really having my fingers in the industry, tons of different clients, like well known to a bunch of people, to just this one job. I'm very isolated within my team. I don't know anybody in the command structure of this company. Even though I'm the senior person visually for these images, I've never met my boss like my higher bosses. I don't have any connections to anybody. So if something happened to this job, I would be screwed. And there's a lot of fear associated with that.

SPEAKER_01 45:31

Of course there is. And it stalled your career growth and completely through all of it.

SPEAKER_00 45:34

My career has completely flatlined. You know, I can't easily travel to a film set anymore. You know, I can't travel on location anymore, which is one of my favorite things to do, you know, be on the sets with the photographers and like figure out how to set up the shoots and you know, like work with the client's life on it's fabulous. I haven't done that in forever. Now, again, I'm very lucky that I have a good job. I'm very happy that I make good money. But yeah, it's career-wise, there's not a lot of advancement opportunities when you're by yourself. If I had a partner, you know, I'm at a cusp of maybe changing stuff, because I have a wonderful partner now who actually has a job. Yay! That's a good start. So we are trying to set up our lives together. So there might be a light at the end of the tunnel for me down the road, you know.

SPEAKER_01 46:27

I don't We will think happy thoughts, but but those are the kinds of impact, right? Of a of a rupture like this, that it just stops other things dead in its tracks. Yeah. And there's you to reorder everything.

SPEAKER_00 46:38

Yeah, and there's so many things. Like, you know, most parents in this area, they connect with other parents and you make friendships with other parents through the sports teams, through the c through the school activities, you know, through all this stuff. None of that is available to me. My son has behavioral problems. He freaks out if he loses. Like he's gotten a lot better. Like he is night and day from where he was five years ago, but he still can't handle losing at a sport. Like it's if there's a sensory overload from being on a field with a lot of people, and then the loss, like, he wouldn't be able to cope. So I can't put him in a team sport. He's not in a regular school, he's in a special needs school, which is amazing for him. And a unicorn place that has helped him so much and is absolutely wonderful. But it's harder forming friendships with other special needs parents because I'm not the only one who's isolated. You know, their kids have their own issues. They come home from school exhausted. Making play dates during the week is almost impossible. And on the weekends, you know, there's activities and they have families. So he's been at the school for he's in his third year now, and I haven't had a chance to make a single play date with anybody. It just doesn't happen, you know. So and my kiddo wants friends, he wants to play with people. And it kills me that I can't give him that. And it like I have so many moments where I feel horrible because it is so unfair. It is so unfair that he has to deal with all of this, that he doesn't get to just be a normal kid. And it makes me so fucking angry sometimes that like there's there's nothing I can do. Like, and I it also comes with this constant questioning of am I doing this right? Am I doing enough? What if I did this? What if I did this? You know, like I have learned so much over the last 10 years. I was completely clueless when this started.

SPEAKER_01 48:40

How would you have known any of these things? You would have can't, right? You can't know this.

SPEAKER_00 48:44

You know, so one of the things that I tell people, even like, you know, the new parents, even if they have regular kids, is like, you are going to fuck up. You're going to screw something up. As long as you try to do your best, that is all somebody can expect from you. But it doesn't mean that I don't question myself. Of course not.

SPEAKER_01 49:03

But you just, you know, I'm and I remember when my son was born, unfortunately my kids were bore healthy, no problems. But I remember the pediatrician saying, and I was a very nervous new mom, like all new moms, first-time moms, and I remember the pediatrician saying to me, God allows a thousand mistakes. And I was like, that's weirdly reassuring on some levels. Like, I'll take it, but that's what it is. You you will not be perfect. No matter what the situation, you'll make mistakes, and you just keep going.

SPEAKER_00 49:31

Do you have to, you have to just keep going. It's I I wish people would. The hardest thing for me is that I have to be the one reaching out for friendships. I have to be the one reaching out for play dates. It seems like my son has two friends here in the community that he met through school and uh one of the moms I met through the moms group here. They all have their own lives, though. Like they have sports, they have a ton of other friends. And I don't think they quite internalize that, like, for my son, this one kid is his only friend. That's all he wants to see. And like, we haven't seen these kids for playdates in like three months. Because if I don't reach out and reach out again and check which time works, there will be nothing coming back from them because you only have mental bandwidth to keep up with so much. And most regular parents, they have the sports and all the other parents they see at the bus stop. And like, that doesn't leave time to make extra time for the one special needs kit.

SPEAKER_02 50:32

Right.

SPEAKER_00 50:34

I always have to try and make those connections and basically beg to for them to give time. Like, I'm not begging, but I'll be the one who's like, hey, I haven't seen you in a while. Should we ever play it for the kids? When does this and this and this work, you know? And stupid things like I've done backyard parties for my kiddo for his birthday, and he loves it. He loves having friends over. But it we're at a point where, like, there's two boys that are the friends that he wants to see because they're his good friends. And I literally have to double and triple check, like, can you guys make it for this date? Please make sure you can make it because he will be devastated if you're not there. Like, it is a big mental load because I don't want my child to be disappointed. You know, like it's it's always that mental load. And I wish I had siblings for him. You know, like I wish there was somebody here all the time that he could play with. That did not work out. I threw myself after I broke up with his father, I threw myself into a new relationship because it looked like this person was amazing and wanted to have more children. And he had a son that was three years older than my kid. So I was like, oh my God, you know, this could be great. And in the process, I ignored a lot of red flags and ended up dating a narcissist who made my life even more miserable and cost me four years before I extradited myself from that.

SPEAKER_01 51:59

That's definitely a conversation we would have maybe over a cocktail, that one. Because I think we all have at least one of those, but yes.

SPEAKER_00 52:06

Yes. Yes. I learned a lot of things, but yeah.

SPEAKER_01 52:11

Let me just ask you a question because we're we're coming to the end of our time, and I want to make sure to grab this. So you already have your ministry assignment, right? Because you were obviously the minister of self-advocacy. What would you say to like a new mom who's dealing with this for the first time? Like you've now had the benefit of 10 years experience dealing with the rupture, the systems failures, the self-advocacy. What advice would you give a new mom who has a child who has similar problems?

SPEAKER_00 52:37

Yeah. One of the helpful things, or dad, one of the helpful things I found, there is a Facebook group for everything, first of all. I found two different Facebook groups for hemoplegia. And it is good to connect with people whose kids have things and find out, you know, like you can ask questions, you can go through the, you know, through the archive chats and look for keywords. And there will always be somebody who's already been there, done that, has talked to it. If you find a more local, like if your child has autism or if they have, you know, even if it's something horrible like cancer, there are more localized groups where you can find people you can actually meet up with. That is a huge, huge help to have. And there are resources that you don't necessarily know about available in your state that you can go for that. Sometimes you find out through accident. But one of the things you can do is get on Dr. Google and say resources in the state of wherever you live for this and this, for disability, and you'll be surprised what pops up. For example, I found out about New Jersey Perform Care. It's something I didn't know about. But it turns out there is a free service paid for by the state of New Jersey for parents and children with troubles, behavioral issues, suicidal attempts, you know, health issues. And they will set up a case manager and they will help you. They will send therapists to your house. They can send you up for respite care. They hooked me up with the Brain Injury Alliance, New Jersey. I belong to them, the New York brand stuff. Yeah, I had, and I had no idea that this existed until I got to a point where like my son was when he was about, I think, five or so, his behaviors were really, really bad. Like, really bad. And I found out later that a lot of it was connected with seizure activity in his brain, which is now better under control. And, you know, he's learned how to manage, but there are resources out there. Now, and somebody who is in a church community, that can be very helpful. I'm not religious, so that is not something that I would access. But a lot of church groups will be extremely helpful to you. Like, especially if you need resources, if you need housing. You know, not everybody is as fortunate as me and has, you know, house has the financial resources to pay for help. There are ways, you know, you can reach out and get it. I know there are groups for women that have to get out of, you know, abusive relationships set up. There's a whole bunch of there's some charities that specialize in housing for older disabled children. You know, there are some groups that specialize in helping children with physical aspects, like with physical therapy. There's gyms where kids can go. So reach out. Do not be afraid to ask for help, even if it's from total strangers. If you're not getting help in your tight group or from your spouse, then start looking. It is there's no shame in asking. And, you know, like you're doing it for your child, you're doing it for yourself. You need to survive. And that's the most important thing.

SPEAKER_01 55:54

It really is. And that is truly spoken by the Minister of Self-Advocacy. I mean, that was actually And I'm also not going to ask you the magic whiteboard question because you honestly answered it so brilliantly in the last one. That I think we know. But it it does sound like you were able to get the resources you need.

SPEAKER_00 56:09

Yeah. I am I am in a but what I like to say is my son's case is a best outcome for the worst case scenario. Like my child is my child is doing great. He's going to have a lot of struggles in life. You know, he is, you know, he's going to have struggles with what job can he do with his disability. You know, he's going to have struggles. He may not ever live independently. His life is a question. One of the hardest things with his disability is that his life is a question mark because I don't know what he's able to do until he does it. There's no there's no blueprint for what this does. Like his doctors are actually amazed by how well he walks, by how well he communicates, considering how bad his brain damage is. He has surprised everybody. And, you know, right now he's a cheeky little guy who plays tricks on me and hides things and puts paper clips on me. And, you know, he is he he can walk, he can run. He was climbing through this playground. It still needs my help. There's times when he gets really frustrated because he can't. But I have learned to sometimes keep him away from things that I know he won't be able to do and foster things that I know he's gonna be able to do. Like he loves roller coasters. And I just he had winter vacation. I took him down and took him to Universal, I took him to Busch Gardens, and we wrote all the roller coasters. Did he love it? He oh my god, core memories made, man. He's still talking about it. He loved it. He went zip lining over a swampful of alligators, and he was a badass about it. I was terrified. Like I'm seeing my child who has a physical handicapped gets strapped. But like he's strapped in, and I'm like, are you okay? And he's like, buy him up. It's like holy crap.

SPEAKER_01 57:58

That's great.

SPEAKER_00 57:59

He is exceeding all the expectations. And you know, I am I consider myself very, very lucky. You know, there's still times in the middle of the night when I sit and I'm just like, fuck. I wish he could just have a regular life. Like, I really wish he could just have a regular life, but he is making the most of the life he has. He is so tenacious. He gets that from the example. We come from a long line of, we come from a long line of not take no for an answer.

SPEAKER_01 58:29

It seems to be a genetic quality.

SPEAKER_00 58:31

He will keep going. He will he will fail at something and then he'll get angry and then he'll come back and try again and try again and try again. He needs three times as much energy for anything than a regular kid does. But he is such a tough cookie, he is so tenacious that he manages to make up for that by trying so much harder than everybody else. And he's inspiring to me every single day.

SPEAKER_01 58:57

I mean, he's inspiring. Honestly, your story is inspiring. First of all, I just want to thank you for coming on, coming back on and sharing this story. I mean, well, I definitely teared up at least once, maybe twice. But I I think this is a really important conversation, and I think this could be inspiring to a lot of people because someone may not have your exact situation, but there are parallels that people can relate to. And you know, and that tenacity that both he and you have is inspiring.

SPEAKER_00 59:25

Yeah.

SPEAKER_01 59:25

So thank you.

SPEAKER_00 59:26

The thing is, like, I recognize not everybody has that. You know, like not everybody has that capacity. And if you don't have that capacity, that is not your fault. Right.

SPEAKER_01 59:36

You know, it's not everybody rely on your individual tenacity, right?

SPEAKER_00 59:39

Yeah. The system shouldn't, like, you shouldn't have to rely on that. You know, and and if you do not have the ability to be that tenacious, if you don't have the ability to push that hard, that is not your fault. That is a shortcoming of the system, but it is not a shortcoming for you personally. Not everybody can be expected to have that much energy, to have that much drive. Some people suffer from depression, a lot of people suffer from depression, and they can barely get out of bed while they have to parent a special needs child. That does not mean that, you know, that they're worse people. That does not mean that they're not putting as much effort, but their capacity is smaller than another c another person's capacity, and the system should be supporting anybody. But it currently doesn't.

SPEAKER_01 1:00:28

No, it doesn't. It doesn't. Which is sort of the whole point. Thank you. Thank you. I don't know. We may come back to talk about the you know malignant narcissist partner thing. It's a different matter. Rupture, it's a little bit of a lighter one, but we might want to consider it.

SPEAKER_00 1:00:43

Possibly.

SPEAKER_01 1:00:44

We'll see. But thank you.

SPEAKER_00 1:00:47

Thank you so much, Wendy. Thank you for having me on.

SPEAKER_01 1:00:50

Happy to.

SPEAKER_00 1:00:51

Thank you.

SPEAKER_01 1:00:54

Thanks for joining us for today's episode of Rupture, the world of Beskessistan. Today's conversation featured Nina Scherenberg, and we explored the idea of waterfall rupture. If this episode resonated with you, or you know someone who could benefit from hearing it, please consider sharing it with them so they may find our community. And to support our work, you can like, share, subscribe, or join us at bestguessestan.com. Bring us your rupture. Bring us your systems failure. We'd love to hear your story.