17 I Caregiving and Family Pt 2: The Realities of Caring For Children with Disabilities

Erica spent her childhood living with a disability and needing a lot of care from her mom. As an adult, she’s now the caretaker to two children with disabilities. In this episode, Erica talks about what she learned from her mom as a caregiver, the day to day realities of caring for children who need a lot of assistance and how that impacts her career, her marriage and her finances. 

Check out Erica’s newsletter at Caffeinated Caregivers.
The song featuring Erica’s musical saw was Solar Eclipse by Jenny Johnson.

__________________________________________________________

Episode transcript is below. Transcripts may not appear in their final form.
__________________________________________________________

Julia Winston: I'm Julia Winston and this is Refamulating.

In our last episode I introduced you to Kathleen Downes, a 31-year-old woman with cerebral palsy. Kathleen and I talked about how caregiving has impacted her life, especially when it comes to family dynamics because Kathleen receives a lot of care from her family. 

Kathleen Downes: My parents and I are very intertwined. And sometimes that's a scary thing because you have an outsized level of terror about what will happen when they die. 

Julia Winston: I learned so much from Kathleen about what it’s like to be a recipient of care and about how we treat people with disabilities in the United States. It’s important to talk about caregiving in the context of families, because most people can’t afford to pay for care, so family members often end up stepping up. In fact, 20% of all Americans are playing a caregiving role for a loved one, like an elder or someone with a disability. This topic is relevant for a lot of people.

So after talking to Kathleen, who receives care, I also wanted to talk to someone who is giving care, to learn about that side of the experience. Kathleen suggested I call her friend Erica. 

Kathleen Downes: So we actually met online because she runs a page called Caffeinated Caregivers that talks about, you know, caregiving issues. She has two children that are developmentally disabled. 

Erica Stearns: My name is Erica Stearns, and I am 39 years old, and I live in Southern Illinois.

Julia Winston: Erica has a particularly unique perspective because she has been on both sides of the caregiving equation. As a child she had a medical condition that required constant caregiving from her mom, and now she's a caregiver to her two kids, who both have disabilities that require constant medical care. 

Erica Stearns: To me, I've only ever known caregiving to be a form of love. I think it isn't often portrayed as that in today's society, but my entire life, love has repeatedly shown up in the form of care and as a parent, a very, having very unique parenting experience that intersects with being a caregiver on a daily basis. Caregiving is the way that I show my kids love, just one of the many ways, but a very important one.

Julia Winston: So today on Refamulating, we're going to hear Erica's story of receiving care as a child, and providing care as an adult. 

Erica Stearns: so I was born in the mid 80s with a condition that's considered a congenital birth defect where there essentially were holes throughout my airway and digestive system in really critical places. That unfortunately meant if I had ate or drank, that would go straight to my lungs, and it did, and that's how they found out that I had the diagnosis of non isolated tracheal esophageal fistula and atresia. And, you know, nowadays, medical technology has advance substantially. But in 1985, that diagnosis was terminal for many children. So for me, what that looked like was that I required the use of a tracheotomy and a G tube, until the age of 15. And I've had about 32 surgeries in my life.

Julia Winston: Erica’s G tube was a tube that ran directly into her stomach so she could get supplemental nutrition. Having a G tube meant that Erica didn't have a lot of independence as a child, she needed a lot of care. 

Erica Stearns: Unfortunately, in 1985, we didn't have the kind of systems we do today, nor the medical technology for someone like me to go home and live independently right away. So I spent a lot of time growing up in the hospital, especially if I needed any sort of mechanical ventilation. I had paralyzed vocal cords as well. So unlike seeing a child cry or hearing a child cry, my mom didn't have the luxury of those sounds. So she was really creative. She, I was a child who grew up with bells attached to my wrists and my little booties so that if I was making the movements of crying, she would at least be alerted.

Julia Winston: Erica’s mom was a caregiving role model for Erica. And one thing she thinks her mom did really well was build a big community around them.

Erica Stearns: So my family, my aunts, my uncles, my grandparents, they never really made me feel different or othered. This was just me. This was just my journey. I didn't really even know it to be different. I didn't really think of my life as being pitiful or tragic or really that different. I was celebrated as who I was.

Julia Winston: When Erica was 15, doctors were able to remove her trach tube, a device that was inserted into her windpipe to help her breath. 

Erica Stearns: That has not been the end of my medical and disability journey, but it did, have an interesting effect where it moved me from this category of being, very visibly disabled to being non visibly disabled. In fact, most people really don't know that I have a disability now until they hear me talk. And then, typically they assume one of two things, that I'm either a chronic smoker, or, which I'm not, or I have a cold. 

Julia Winston: When the trach tube was removed, Erica was able to live a different life than the one she’d known in childhood. She didn't need constant care anymore, so she gained more independence from her mother and other caregivers. But she wasn't free from her illness.

Erica Stearns: I think the scariest part for me is that they really don't know why my vocal cords are suddenly, working on their own because they were paralyzed, uh, the majority of my childhood. So they really don't have any idea how long that will sustain itself. So I remember at 15 being told, okay, we're going to do this surgery, but you do realize, like, you might have to have a trach again.So that's terrifying. And I think because I had this like weird, I don't know if I'm going to live for very long or if I'm going to have this voice for very long. It just really shaped my drive and my passion to first adventure and do as much as possible with my voice and with my life.

Julia Winston: Erica spent her 20s adventuring. She didn't finish college, instead she traveled, dated to have fun, not to settle down, and she leaned into her love of music. 

Erica Stearns: So I play the musical saw, I can play a number of instruments, but that is the instrument that, I really, grew to love and identify with because I like to call it, it's like my voice. It's the voice that I imagine I would sing with if I had not had paralyzed vocal cords. It's a very ethereal, feminine sound and I play it in such a way that I harmonize with either the other instruments and or the lead singer.

I got to play music and travel the country. music and art, it really led me to where I am today through music. I landed in Southern Illinois and I met my husband Randy and we fell in love through music and Star Trek and video games and It was like we had so much in common. We could just talk and laugh for hours and I really just, I found my best friend and then we decided to become parents and it was so exciting because You know, I thought, how cool would it be if our kid liked Star Trek and video games and music. What a cool kid that would be. That's like what you think in parenthood, right? Like what are our genes going to create? It's going to be this awesome combination of two amazing people, right? 

Julia Winston: Erica and her husband did get pregnant, and they were thrilled. But like many first time parents, she was also scared of what could go wrong. Her own experience of being born with a medical condition had her worried that something similar could happen to her child. 

Erica Stearns: And I remember at some point in our journey about midway in pregnancy, we had an ultrasound that came back indicating that our daughter might have a smaller head circumference than what was normal. And that obviously scared us, and we didn't really know what that meant. But in the follow up appointment, our doctor was like, she's down low in your cervix. It's, these measurements are not always accurate, so we'll just keep an eye on it. So we had some follow up appointments and towards the end of her pregnancy, that's when the doctor finally conveyed that the head size was not growing. She was falling off the charts. And when we asked, you know, what could we do to get more information and like, really prepare ourselves, we were told that it was just kind of too late to start preparing ourselves.

By the time You know, I was in my 36th week when he finally really sat us down and told us the reality of what was going on. 

Julia Winston: They didn't know it at the time, but Erica's daughter, Margot, would be born with a rare genetic condition that’s so rare there isn’t a clinical name for it. One of the symptoms is microcephaly, which means she was born with a much smaller head than what is typical for a newborn, which can cause seizures, delayed physical and mental abilities, and problems eating or swallowing. 

Erica Stearns: So when my daughter was born, I could tell instantly that something was wrong. And I think that is probably the worst feeling to have and one of the worst things to admit because I never want to put my daughter in the category of wrong. But that's what it felt like at the time. She didn't cry when she was born. She didn't have much tone or many reflexes. She was having seizures, really aggressive seizures, seizures so bad that she couldn't eat. And when I voiced those concerns and when I voiced the fact that I could recognize that these were seizures, I would say I was told, oh, don't worry. Those are normal newborn baby movements. And for 12 hours, I had to hear so many medical professionals go, Hmm, I don't know. Those just kind of look like normal newborn baby movements. But I knew. Something just primal that told me she's not okay. You need to fight for her. So fight I did, and it wasn't pretty.

Julia Winston: At one point, Erica’s daughter had a massive seizure when the doctor was checking on them. 

Erica Stearns: And from that point forward, things moved pretty quickly. We were sent to a different facility, sent to a different hospital, a more advanced hospital that was able to really support her and provide the type of testing and type of expertise that she needed. We also underwent genetic testing. She went through a lot of really invasive and painful testing to try to determine what the cause of her symptoms were. And we remained in that NICU life, is what they call it, for several months.

And eventually we were able to take our child home. And what that looked like was really learning so many things. being with her at the bedside every day in the NICU. Learning how to read the monitors, learning how to read her. learning to determine what is a seizure versus what is dystonia, learning how to feed her, because she didn't really have very strong oral suck or skills, learning how to love her. She had a lot of tubes and wires, and so just getting skin to skin time was really, it was challenging, but it was something we were motivated to do because we just wanted, we wanted her to know love.

Julia Winston: It would take Erica and her husband a year to learn about the ultra rare genetic condition that caused Margot’s microcephaly. During that year, they spent a lot of time with doctors searching for answers. And in between hospital visits, when they were at home, they started learning how to provide care for Margot.

Erica Stearns: At this point, we didn't really know what Margot had because her genetic testing came back, null. they couldn't really find anything. But we knew that in the world of genetics, I think we at this point, the current landscape might be three to five percent of what we know when it comes to what genetic mutations exist. And so by the time we went home, we were her experts. We still had a lot to learn, but we knew how to love her and how to support her. And we also knew, to some degree, that our care for her would have to evolve as she grew and changed and as her medical complexities, you know, manifested in different ways throughout her life, that we would have to really stay on top of that and, and continue to be her experts, which is somewhat ever evolving.

Julia Winston: When Margot was a little over a year old, Erica got pregnant again, which was a surprise. 

Erica Stearns: We were not totally ready to have a second child while still learning how to be the best parents for Margo, but we just went with it. We kind of felt like we always wanted to have multiple kids, so if we were going to do it, might as well be now. We also felt so scared, and we felt so afraid of people's opinions, and how people might perceive us as being irresponsible for bringing another child into the world, despite having a very medically complex child that required many resources. 

Julia Winston: They had a lot of worries about this second pregnancy. Like Erica said, she worried people would look at them as irresponsible, bringing another child into the world when their daughter already needed so much care and resources. They also worried about how they would juggle two kids when one already needed so much care. And of course, they worried this baby could be born with the same condition as Margo.

Erica Stearns: We did not know what we would do if we found out he had the same condition as Margo. We very much were comforted by the fact that we would have choices. Because we knew that Margo's care was so intense and that we were essentially unsupported. We had to leave our careers. We had to, I mean, we were living on so little financially and utilizing, you know, again, support and resources that we never imagined having to utilize. And also just witnessing Margot go through so much, I mean, so much. And her first year of life was so rocky, so many moments where she was life flighted to receive critical care. I just, we didn't know if it would be fair to put another child through that. And so having a choice gave us so much comfort.

Julia Winston: They had a choice because Erica and her husband live in Illinois, where abortion care was available to them. They didn't really want to share the news that they were pregnant until they had a full MRI done on the baby to see if its head was growing at a normal rate. 

Erica Stearns: Ultimately, we were told our child was healthy and that he didn't appear to have any of the same markers as Margo had, now that we knew a little bit more about Margo. And so we proceeded to carry our pregnancy to term. 

Julia Winston: Once they had those MRI results, they expected to have a totally different experience with the birth of their son. 

Erica Stearns: And we received the second shock of a lifetime, when he was born with the exact same presenting conditions. And to this day, I will tell you that I don't know what decision we would have made if we had found out that he had that condition when we were 20 weeks pregnant. I mean, I don't even know what options you have at that point. And I'm willing to take judgment for that, but I'd really ask people to put themselves in our shoes. Because we loved this child, and we loved him then. But we also saw how much pain our daughter was put through. And we had no idea how long she would live. And we had no idea if we could do this times two. It's so much. The number of doctor's appointments, the numbers of hospitalizations, the number of people it takes to care just for her, we didn't know how we would do that multiplied by two.

I can tell you now that I am so glad that Caratekus is who he is. That's my son, because he really brought so many answers with him because of him being born with the same exact presenting conditions. We were able to have researchers at Yale isolate their genes and determine where that genetic mutation spawned from, and because of that, we have answers for other families around the world. 

The other side of this is that Caratacus ended up not having to have as painful or traumatic or turbulent beginning of life because his sister had paved the way for him. And we knew what worked for her, so we didn't have to have a lot of the mystery trials and challenges.

And he's also taught us a lot about our kid's conditions. Many of the things that we thought were maybe developmental delays for Margo or a part of her medical condition, we learned it's actually just a part of her personality. She does not like to perform for people. She's not, overly emotional or expressive, she's actually quite serious. Our son, on the other hand, is a performer. He is overly expressive and actually brings out a different side of her. We've learned she's very protective of him and she's very much observant of what other people are doing to him.

Julia Winston: So now, Erica and her husband are caregivers to two medically complex children. And as we learned in our last episode with Kathleen, families who include people with disabilities don’t really get much help. The way it works in the US is that the family has to provide most of the care, and figure out a way to pay for all the medical needs. 

Erica's kids are now 8 and 6. Even though they've been able to learn more about the kids' rare genetic condition, they still need constant caretaking.

Julia Winston: What kind of care do they need? 

Erica Stearns: Margo and Karatakis, they require full care. So they are unable to live independently or eat independently. And at times they need a lot of respiratory support to breathe. So that looks like helping provide not only the daily hygiene care, such as bathing and feeding and changing, but it also means that in order to You know, get them into comfortable positions we are lifting and moving their bodies and utilizing different mobility aids to keep them comfortable and keep them in alignment and keep their bodies supported. It means that they require what we refer to as a cocktail of medications to keep their seizures at bay and to keep them healthy and to allow them break from seizure activities so that they can develop and enjoy the world. It requires constantly coordinating with medical teams, charting, keeping really meticulous notes on changes in their health status. It could be as simple as, were they very sleepy and did their respirations, decrease significantly to something more obvious such as they were having grand mal seizures or they were up all night puking.

So, yeah, it's kind of like having a field hospital in our home. So, we very much live with medical equipment as a part of our decor. We don't spend a lot of time outside of our home because we have found that it's just, really inaccessible to take a lot of those devices and our children out into the world that really isn't designed to support people who require a lot of technological support in order to live. And even like at a more basic level, living in Southern Illinois, the majority of places are not wheelchair accessible. The majority of places, in fact, I don't know of a single one in a two hour radius that has an adult size changing table for our children to just do what humans do regularly, which is use the restroom.

Julia Winston: And what kind of care will they need in the future?

Erica Stearns: There are no adults living with their rare disease. We've kind of always been told and under the impression that our children may not reach adulthood. At the very beginning of my daughter's life, we were told we would be lucky if she lived to see childhood. So, you know, it's just kind of been one step at a time and having grown up and really kind of survived against the odds, I Maybe that influenced me into really, like, not fully taking doctors seriously when they said things like that because, I mean, they said that about me. They said I'd never be able to talk or eat on my own or breathe on my own. And here I am doing those things. But I also have to acknowledge that, like, I'm very lucky and I don't have the same, cognitive disabilities, intellectual disabilities, physical disabilities as my children and, and we just don't know. So we just take one day at a time.

So, as a family, we've really kind of made priority in balancing their quality of life, and make our home as much of a fun place and an oasis as it can be, so that we don't feel like our kids are missing out on experiences that could be happening outside of our home, if that makes sense.

Julia Winston: How have you turned your house into an oasis? And what do you like to do

Erica Stearns: Yeah, so we actually, my husband and his father, they built, um, what we call our kids accessible wing on our house. So they have a room and a bathroom that was designed just for them and all of their needs. We also made it so that our kids had their own outdoor space where they could watch all the wildlife that tends to grace our forested property. My husband is an avid gardener, so we have a flower garden right outside of their windows, their bedroom windows, but we've also planted it in such a way that they can have easy access to the flower garden. And the flower garden brings so much too, right? We have caterpillars that get to crawl on their arms and butterflies and snakes and frogs and lizards. And my daughter absolutely hates this part, but we let them touch all those critters and just really kind of, you know, I guess replicate what I imagined Snow White and the Seven Dwarfs had. It's just cottagecore life. 

Julia Winston: Redesigning their house is just one thing Erica and her husband had to adjust in their lives to accommodate their kids' disabilities. They also had to reframe their expectations around what parenting and having a family would look like for them. 

Erica Stearns: I think we had imagined as musicians that we would have our kids out at concerts and we would be taking them to art shows and we would really be out there doing more creative community centric activities. And I think that has been a part of this journey that we have really grieved is that we just haven't been able to do that.

On one hand it's lack of accessibility in those spaces, but the other side of it is that a lot of times that kind of stimulation results in seizure activity and it really puts our kids at high risk for, you know, contracting. a virus or illness. And we've just learned over the years after our few attempts of doing things like that, it ended up resulting in prolonged hospitalizations. And again, touch and go moments where we Where our child's life really hung in the balance, and we decided that's not really worth it.

Julia Winston: When we come back, Erica opens up about finances. 

Julia Winston: I'm curious to hear a little bit about the financial realities of your life, having children with the disabilities that your children have. What are the financial implications for your family?

Erica Stearns: Yeah, I think this is an important, um, question and I think it's one that, many years ago I had a lot of shame surrounding it to answer because, again, our society really measures success based on things like material items and and honestly our income. So for a while, the fact that I was happy, so happy being a mom and so happy having my child at home and alive, I felt quite ashamed, like I had in some way failed because, I had to give up my career in order to care for my child. Unfortunately, we don't have a system where there's, you know, daycares who are equipped to care for children who have feeding pumps and seizures and, and really need extra one on one support.

My husband and I, we both came to a relationship with our own independent income and career paths, and that quickly had to change following the birth of our daughter. Um, my husband's job kept him traveling a little bit every day, pretty far from the home. And there were a couple of incidents in Margo's first year of life where we didn't know if she would live.

We had to rush her to the ER and I had to watch some pretty scary things happen, including her being sent off in a helicopter three hours away to a different hospital. And the fact that my husband could not be there with us in that moment was really, really hard on him. So, in order to be closer to home, he took a different job that was paid significantly less. And to him, that felt very much like a step down. But, As far as our lives were concerned, it was a step up. It allowed us to be closer. you know, He had a job that was more understanding of our family circumstances. 

Julia Winston: Not long after Margo’s birth, Erica found out her family qualified for Medicaid, which offered more caregiving coverage than their private insurance. Medicaid is for low income families. When they started their family they didn’t qualify because both Erica and her husband had jobs. But after Margot was born, Erica left her job to take care of Margot and they’d spent all their savings on medical bills.  

Erica Stearns: At one point following my daughter's NICU stay, I actually requested all the medical bills, and they were over a million dollars. And we were trying to figure out how we could manage this life financially, because Insurance, we knew was not going to cover everything that our daughter needed, but we had pretty good success with Medicaid. And while it is not ideal, there are definitely a lot of improvements that Medicaid needs to make. It did a lot to support her and us. 

Julia Winston: But there is a cost to that support. Medicaid is the best option because most private insurance companies will not cover all the care someone with a severe disability needs. They usually won’t even cover some of it. So Medicaid has the best coverage, but it’s exclusively for low income families. Which means families who are not low income have to choose to be poor so they can get the care they need. 

Erica Stearns: And, you know, that really put us in a bind because the alternative is me leaving my daughter in the care of someone who is not, at that point, was not, we didn't have things like home health nursing because, again, Medicaid provides home health nursing, so if I returned to work and made more money, then I would essentially lose the skilled nursing support that Allows me to even go to work and earn that money. So it was such a catch 22.

Julia Winston: Erica and her husband had a very clear line they couldn't cross. When their kids were first born, they couldn’t make more than around 45 thousand dollars a year to stay on Medicaid. So neither she or her husband could advance in a career or have a side hustle to save, or take themselves on a vacation. In the last few years, things have started to change for the better.

Erica Stearns: Fortunately in our state of Illinois, They were considered eligible for waiver status, which essentially meant that having a Medicaid waiver in the state of Illinois, they would not count the parent's income against my kid's eligibility. And that happened only, I think almost two and a half, three years ago now, and that was a really, I mean, that was a transformative moment because suddenly, because they were eligible for a program that didn't count our income against us, we were finally able to look at options like returning to our career and not living under the limitation of, a substantially limited income.

Julia Winston: Erica recognizes she is lucky because she lives in Illinois, a state that passed legislation creating this waiver program. But a lot of states don't have this waiver, and families have to stay poor to get their kids care. 

Erica Stearns: And some people might ask, well, why didn't you just go and get private insurance? And again, I want to remind them that most private insurance companies do not provide home health nursing. And that's really what our children needed. So the option was put my children in the care of an unskilled individual so that I could be away for eight hours a day to pay for a private insurance that as I know, very well does not cover the majority of the needs that my children have, or stay home and just learn to live with less.

We couldn't go off and buy a home. We couldn't go off and buy a new vehicle. We didn't really have the resources for that. We had to utilize not only Medicaid, but we utilized Social Security Income, which is another program that is so beneficial for not only families of kids with disabilities, but also people with disabilities. And yet it's a program that has not been updated in over 50 years. So 50 years ago, they decided that a family could have at least 2, 000 in assets, and that was pretty substantial for 50 years ago, you know? 

And this day and age, $2,000 is not enough enough of a security for families. $2,000 that asset limit includes things, not just what you hav e in your bank account, but if you have another vehicle, any other, you know, big tag item things that you might have, if you, even if you have a john boat, you know, they're going to count that as an asset. 

Julia Winston: The waiver meant they could make more money, have more assets, and still get Medicaid. Another thing that changed in Illinois in the last few years is that the state will pay a family member performing caregiving duties. These policy changes allowed Erica and her husband to re-evaluate their careers and caregiving situation.

Erica Stearns: My husband is a veterinary technician. And I was an optician and I ran a small eye doctor's office. We kind of went back to the drawing board and we both realized as caregivers, We were not the same people that we were at the beginning of our careers. We have learned so much. I often tell other caregivers, you can't unsee or unlearn what you now know. It's all a matter of figuring out how to use that in your life. And, and determine how you want to use that knowledge. For me, I decided I wanted to use that knowledge to help other caregivers.

For my husband, he decided he wanted to become a nurse, and the primary caregiver. That's kind of atypical for a lot of family dynamics, but my husband is a very, very nurturing person who is actually quite a natural caregiver. And I think moving from finding a vein on a chihuahua to finding a vein on a human is going to be pretty easy for him. So nursing kind of felt like the natural progression for him. And it meant that the care that we're doing overnight, the hours that we have available for nurses that we can't fill, he can get paid to fill those because we're already doing the work regardless.

Julia Winston: So he's being paid to care for your children.

Erica Stearns: he will, once he is complete in nursing school. There are some states that currently pay caregivers who don't even have a nursing degree. Unfortunately we live in a state that's not quite there yet.

Julia Winston: These kinds of policy changes not only give Erica's family a financial break, but it allows her and her husband to have lives outside of caregiving. With her husband as the full time caregiver, Erica wanted to spend more of her time doing advocacy work and interacting with more families like hers.

Erica Stearns: since becoming a caregiver, I've been very passionate about finding ways to help caregivers feel validated and normal in their experiences. And one way that I do that, I do this for the state of Illinois through a program that is designed to, provide care coordination services to children with medical or medically fragile and technology dependent. I get to interact with parents early on in their journey with caregiving and really welcome them to the community and give them what I like to think of as the holy grail of resources that I didn't necessarily get at the beginning of my journey. 

Julia Winston: She also created a website called Caffeinated Caregivers, where she and her collaborator Alyssa Nutile write about what it's like to receive care and share resources for caregivers. Being able to have time for her own passions is something she and her husband have tried to always make a priority. 

Erica Stearns: It's, and it's such a relief to have that as a parent because I don't always want to be a nurse. I don't always want to have to do what often feels like the painful or mean things to my kids.  So, having someone else come into our lives and give us that respite, give us that break from being the person to always do the medical stuff. The break where I just get to go downstairs and be mom. That is where home health has greatly improved our lives. Not only has it allowed us to play just the part of mom and dad while they're here.But we also get to do things outside of caregiving that help us to really re identify with ourselves because I firmly believe that our kids need that too. Our kids need to see who we are as people outside of caregiving so that they can have those examples of being people as well.

Julia Winston: When Erica was a child with a lot of medical needs, she remembers seeing her mom get lost in sewing projects, and how happy that  made her. 

Erica Stearns: She was doing it, any chance she got when, whenever she had a break from me, I'd sneak in the living room and I'd see her sewing and I'd see her in her zen. And now when I sew, I feel connected to her through that. So for my kids, when they see, uh, Me doing my work or they see their dad and me playing music or video gaming. We like to do that too. They get to see us in our zen, and maybe it will help them feel connected to us when they grow up to discover their own versions of that for themselves. It's hard to say, but I think that part of being a parent and a caregiver is really important to, to balance and include in your life.

Julia Winston: This season, we've been toying a little bit with the idea of utopia. We talked about it extensively in episode 11, challenging ourselves to imagine what life could look like if we focused more on fulfillment than achievements. When you really step back and dare to dream, what’s your ideal way to live? To parent? So I asked Erica, what would her ideal, utopian, version of care look like? 

Julia Winston: If you could dream of a world where life was easier and where you think life was better for people who are in positions where they're giving and receiving care, what would you want to see be?

Erica Stearns: An ideal world for my family and for me it would be the elimination of barriers and total access to things like health care and support. And I don't just mean Healthcare support, I mean, actual physical, emotional, mental support as well.

Throughout history, we have moved from a very communal society to one that is very individualized, and yet our healthcare system has moved towards the concept of community care. So, Everything about healthcare now is really focused on getting the patient out of the hospital and back into their community, and that's great in theory, but it's absolutely unrealistic in practicality, in reality, because when you go into their community, There are so little resources and financial support or financial incentive for someone in your community to step into your lives and help you to provide that community care. 

I think there's a very big misunderstanding and gap between medical professionals and the hospital, really supporting you and teaching you how to be a support provider and caregiver and then sending you home and just essentially being like, okay, figure it out, figure it out without any compensation, figure it out without any, anyone to give you a break.

Julia Winston: Utopia for Erica also looks like more people caring about caregiving.

Erica Stearns: Evelyn Carter. jimmy Carter's wife. Right? Fact check me. 

Julia Winston: Her name is Rosalyn Carter and she was a staunch supporter of caregivers.

Erica Stearns: she said it best when she said that, you know, Everyone, at one point in their life, will either be a caregiver or a recipient of care. And I don't think any one of us really take that into account until we are forced to. And then that experience tends to really shape you to the extent that you look at life and systems differently. Whether it is you're caring for a parent, or you're caring for your child, or you're receiving care yourself. And I would ask our listeners to not wait until that moment to really start thinking about the concept of care, giving or receiving, and how it impacts, or could impact you, or is impacting your neighbor, or your family member, or your friend. And ask, ask those people in your lives, if you have them, what you can do. It might just be as simple as a phone call to your local legislator. It might be a meal. It might be, hang out with me and have a glass of wine and let's not talk about it at all. It might be, don't view me as a person who needs care, just view me as me.