Ep. 102: Becoming a Single Medical Mom w/ Tiffany Pasilles

 

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Summary

When Tiffany’s husband filed for divorce, she was 32 weeks pregnant with their daughter Aiyana they weren’t sure would survive to birth because of her diagnosis of trisomy 18.

In this episode, she shares what it was like to navigate the following year inpatient at the hospital, co-parenting with a man she had very mixed feelings about. She also talks about what it was like to be discharged from the hospital with two daughters to care for without a house or job to go home to, and the ways she’s whittled time for self-care when everything is on her shoulders alone.

Episode Transcript

Tiffany Pasilles  0:00 

I don't have family or friends who can do this stuff either. So it's really the ownness is on me to be everything to everyone, and that load does get heavy at times.

 

Madeline Cheney  0:15 

Hi, you're listening to The Rare Life. I'm your host Madeline Cheney and I have Tiffany back for her special topic episode, all about being a single medical mom. As she touched on in her story episode, Tiffany and her husband split up a few weeks before their daughter, Ayana was born with Trisomy 18. If you haven't heard her story episode yet, pause this one, go listen to it, and then come back for this one, because it gives a lot of context for our conversation today. In this episode, Tiffany shares more of the story of her divorce and how that affected their daughter's inpatient stay of almost a year. She also talks about the next level caregiver burnout when you're doing it all on your own, and small ways that she has started to prioritize her own care as well as her daughter's. She also touches on how she manages to stay afloat financially, after closing her business to care for her daughters full time. Tiffany truly has so much on her plate. But worrying about Aiyana’s nutrition is not one of those things. Tiffany feeds her a formula called Nourish from the awesome company Functional Formularies via her feeding tube. The formula is made with real whole food USDA certified organic ingredients, and is free of the top eight allergens. And they even have a keto friendly version for those on a keto diet. Each of the eighteen organic ingredients are plant based and are selected with a specific benefit in mind. And they have no artificial ingredients. And zero is sugar added. And honestly, you might be surprised how rare that is in a feeding tube formula. I mean, these kids eat way better than I do. It's amazing. Let's talk insurance. When you work with your child's clinician, there's actually a pretty high success rate of getting insurance coverage. Functional Formularies also has a team member dedicated solely to helping you navigate insurance, which is awesome. If you are interested in trying out the formula before getting into Mama Bear mode and working to get it covered, you can ask your clinician to request a free sample from Functional Formularies. There's a link in the show notes for them to do that. You can also enter our giveaway on Facebook this weekend for a chance to win some formula to try out. There are links in the show notes for all the things like learning more about functional formularies requesting a free sample and entering our giveaway. A huge thank you to functional formularies for creating a product that can give us such peace of mind and for sponsoring this episode. All right, let's dive in. Hi, Tiffany. Welcome back to the show.

 

Tiffany Pasilles  3:20 

Hey, Madeline. Thanks for having me.

 

Madeline Cheney  3:22 

I'm really excited about today's topic of single parent teen when you have a medically complex child because, you know, it's a thing like there are people out there doing this. And I think it's really, really important for that solidarity to be had and for them to know that they're not the only ones doing this and to feel that community. As I'm sure it just adds another layer of isolation on to an already pretty isolating lifestyle.

 

Tiffany Pasilles  3:47 

Yeah.

 

Madeline Cheney  3:48 

So I would love to kind of dive right into your marriage during the pregnancy of Ayana and how that led to him filing for divorce.

 

Tiffany Pasilles  3:59 

Yeah, so I kind of call it like "The Day I Became a Single Mom", because it really was like a specific day. The pregnancy as a whole going into that our marriage was not strong. We had a lot of external forces that were breaking us down in terms of like his job and being so far away from home. He was law enforcement. So we were stationed pretty far from home, away from support, and we really dependent on each other pretty much for everything. And as we had our first child, we had actually gone through some miscarriages and then we had Leilani, my oldest daughter who's now five. And when we got pregnant with Ayana, who is now three, you know and got the diagnosis. It felt like we were just seeing this diagnosis differently. Like I had a physical touch point. I could feel Ayana. I had like an anchoring I feel like in this. Whereas-- this is where my empathy for him happens is-- he didn't have that. He didn't have something that anchored him. And so I feel like that news, if you get it like that can feel really out of control. All you kind of focus on is the potential of suffering for your child, and what do I need to do to make sure that my child does not suffer. And I feel like that's really where his focus was. Whereas mine was much more focused on like, finding, living people finding non discriminatory care, building out a team that would support her that had experience with kids like her and traveling to all these things. And just being a mom still, because my daughter Leilani was barely two years old at the time. She was still a baby, essentially. And I really needed to be there for her. So at 32 weeks, or 32 weeks pregnant, he left and filed for divorce. And it did not happen through a conversation with me. I kind of describe it as like he snapped, it was just like his breaking point. I think there was not a lot of communication happening from him. And I just don't think he knew how to even communicate how he was feeling and what was going on at the time. So he left and filed for divorce. I received the papers. So we were thrust kind of into that, like, court process. Had to go to court like 33 or 34 weeks pregnant, to get separation and temporary orders. And I was as you would think I was I was a mess. I was crying. And it was too much. I did not know how to manage all this, especially at that time. I felt betrayed. And I felt really alone. And I also felt extremely scared. Because everything felt so wildly out of control, to the point where everything felt reckless, like not just him, but like the diagnosis with Ayana. Like, how was I going to work? Where was I going to live? Everything was ending at the same time. And it was really scary. It was really, really scary.

 

Madeline Cheney  7:02 

And not to mention the strange relationships with your family members happening at the same time, right? Like I imagine that's also this added instability that was happening of your life just kind of going up in flames.

 

Tiffany Pasilles  7:14 

It really felt like that I couldn't depend on my close family members, you know, I'd ask them for help. And they ended up actually taking his side, essentially, in the divorce. Like actually telling me so like, "we don't support you in this. This is your fault." And I was like, how is the divorce all one person's fault. When I don't even feel like I understand why he left. So for me, it was like trying to work through those feelings of my family members, my feelings about him trying to understand but not getting anything from him. And me just having to kind of like, take my hands off of all that and be like, I can't control these family members and how they're choosing to perceive a situation that they're 2000 miles away from and judging. And I can't really do anything about him. Clearly, he's got his own stuff going on. What can I control of this? Like, where can I put my focus? And it was my girls. So I said, you know, everyday, I just need to get up and actually get out of bed even though I didn't want to I needed to get out of bed and take care of Leilani and make sure she had the most normal and best day possible every day. And also for Ayana trying to take care of myself if I could, and just trying to prepare for her birthday was coming up and all of the care that needed to be set into place, the teams. And we talked about previously, like how we had to navigate all that and like the advocacy and all of the resistance that I was kind of going up against in the medical community that we had different touch points with because of her diagnosis of Trisomy 18. And them just not seeing her as compatible with life and like worthy of these interventions and really had to fight my way through that. So at that point, the divorce wasn't actually happening. The divorce actually didn't happen until the end of 2019, I think it was. So during that whole time we were just separated essentially.

 

Madeline Cheney  9:18 

How old was Ayana on that timeline? Just to give us context.

 

Tiffany Pasilles  9:23 

So she was born September 2018. Just about one year in a couple months, I

 

Madeline Cheney  9:28 

Wow.

 

Tiffany Pasilles  9:29 

So it was basically at the end of two months in a NICU at one hospital eight months of the other one heart surgery like multiple surgeries, cancer treatment, and then we discharged home and I have to move out of this house that's not mine anymore. And we moved into the RV and it wasn't until we moved up to Austin, after we moved into the RV, that we actually finally settled the divorce and signed the papers. I think it was December 2019. We went right into Christmas. That it was finally official

 

Madeline Cheney  10:00 

What was that? Like during that time period of when you knew he was filing for divorce, but it wasn't complete yet. And you were just separated and you're in the hospital? Like, was he involved at all in her hospitalizations or like decision making? Like, what was that, like?

 

Tiffany Pasilles  10:14 

It was honestly really confusing. I still had feelings for him at that point, because he was my husband, you know. Like, just because you leave, like you rip the band aid off, it doesn't all of a sudden just stop happening. So I had to really manage how I felt about that, because I had a lot of mixed feelings. Like there were moments where I'd see him with our girls. And I'm like, "that's my kids dad." This was the person who chose to live my life with this was my best friend, truly. And then we would be negotiating divorce terms at her bedside, in the hospital at night. And I felt sadness and grief and hate. Like I remember so many times, why are you doing this to us right now? Like, why? Why does it have to be right now, it just felt like there was such an urgency for him that he needed to distance himself from me. And I couldn't really make sense of that. So at that point, it was a lot of things were not defined. Things were very loose, because when Ayana was in the NICU, he ended up taking a transfer to Arizona. So he then was kind of flying back and forth for like major surgeries, essentially. And it really was just me with the two girls. And so at that point, we didn't have like COVID and stuff back then. So Leilani could be in the hospital with me during the day. And then we were at Ronald McDonald House, and then I would hire from like Care.com Night Sitters. So once she went to sleep at Ron McDonald, the sitters would stay with her, and I would go back to the hospital, because at that point, Ayana, she tend to pull her biggest stunts at night, in the middle of the night, and I needed to be there to manage those medical situations. And so that was a, we spent our entire days at the hospital, we take a break in the afternoon and go take a walk and go to the park or go to the grocery store. But really just back and forth, playgrounds and hospital all day and night, and I would fall asleep around like three in the morning, I get a few hours sleep and wake up with Leilani at normal time, kids wake up and like get us ready, eat breakfast and head back to the hospital. And we did that for almost a year. You know, in terms of like co-parenting, we had to be pretty unmatched because of the situation with him being so far and us living full on hospital life, inpatient hospital life. Like there was no taking kids places. There was no quote unquote, visitation and all that stuff. That really didn't happen until we discharged. And then we had to really kind of figure out what life was actually going to look like, post hospital. So it's almost like we had hospital life. And then after hospital life was kind of how I saw it splitting. And during that whole time, in the NICU, I had to close my business. I had a really long career, both corporate and then I started working for myself and started my own business. And I had to close that because I saw no end to this, I knew I was not going to be able to support clients and integrity with everything I had going on. And so I had to shut that down, I had to basically pair everything in our life down to just the bare essentials. Budget wise, we were living off of bare bare bones, because I was still also helping to pay for a house back home that we weren't even living in for that year.

 

Madeline Cheney  10:26 

Oh my gosh.

 

Tiffany Pasilles  10:44 

And all the changes that just come with your identity as a wife being taken away even though officially I was not a wife yet. That wasn't until 2019. But he was still living his life, as you would imagine. And I wasn't. I was really stuck in limbo. And I felt that that limbo was kind of excruciating to me. And to a degree we still kind of are in that I feel like we are finally at a stage now that we can begin to move forward. But it's really been a solid three years of waiting for things to kind of settle ,waiting for the right timing of things for me to be able to put the next foot in front of us for our next step. And that waiting, maybe that's what I'm supposed to be learning in this process. But that waiting that patience has been so challenging with everything that's going on because it's so uncomfortable. You just want to get out of that discomfort, you want to soothe that discomfort. And so I did see you know in different ways me trying to like soother through food or numbing out through Netflix at night. Now like I've had to take a look at how I was getting through hospital life and then what carried over into normal life and really look at that and be like, how is that hurting me and how is that helping me? Because I have to basically redefine how I live now. Life is so different as a single parents, it's so different with a child with medical needs. Now I don't have time to just go be by myself even physically there is not space in our RV for me to just be by myself. I can't just have like babysitter's come and watch Ayana. Like you have to have someone who understands this stuff. And I don't have family or friends who can do this stuff, either. So it's really the ownness is on me to be everything to everyone. And that load does get heavy at times.

 

Madeline Cheney  15:36 

Yeah, and I imagine like you have two factors, like you said, like being a single mom, so you don't have that partner. And then having a child that's medically complex to the point where you can't just hire a babysitter or have a friend come watch her. And I feel like both of those just puts on like such a heavy load onto you as the caregiver. But then to have both of them at the same time. I mean, I imagine that that load you're talking about is immense, where you can't get time to yourself, yeah. And all of it,

 

Tiffany Pasilles  16:05 

it's kind of like, I feel like I'm pulled in two different directions as a single parent. I feel like if I was still married, and I had a spouse to do this with, I feel like that wouldn't be so difficult, because one could go take care of one child and the other could go do that. But I feel in so many situations that I have to make a choice between what is best for Leilani. She needs socialization. She needs to play with other kids, she needs to go out and do normal stuff. And then on the other hand, there's Ayana who has a fragile immune system. We can't just be going out around whoever. I can't have her getting sick, because it's a different thing for her. And you know, so there's like things about just like our day to day life. I want to go to a movie. I want to go watch a movie with Ayana. I can't do that. I want to go the pool. Well, Ayana's heat sensitive. I can't do that. But I'm also like very cognitively aware of the fact that like I don't ever want to create the dynamic that Leilani ever associates not being able to do stuff with her sister either because of her sister. So I try to bridge their needs most of the time, and find ways to do things that are fun for Leilani and give us a normal life in a sense, but that are still like safe and taking into consideration Ayana's unique needs and system. And the part that tends to fall away is me that, you know, and I will say very, very honestly, you know that first year was straight up survival like at the most raw way possible. And the second year was really spent... honestly, just like settling into this life. Like all of a sudden I'm in an RV, a single mom with two kids and now doing medical needs at home. Like it just was all so new. And I think that second year was really spent just kind of acclimating to the changes. And also just focusing on getting Ayana stable. And by the time we got to the third year, I felt like I kind of had more of a hang of this. But I still was not really focusing on myself at all. I was not factoring myself into the equation, I was meeting their needs, but not necessarily mine. So I really felt my body shift at that point. And that's kind of the first inklings that I felt like burnout, I think. I don't think it's what I knew what it was back, then I just kind of felt this shift where I was a little more tired. I had a little less stamina and like little less tolerance for things. And I was starting to gain more weight, like my body just was not keeping up in general. And at that point, the third year was actually when Ayana diagnosed with some new rare diagnoses and had to have an additional surgery. And that was kind of the first point that I had realized that I mean, I knew this, but I don't think I'd like had internalized it that this was really a marathon with her. And that what we had gone through was the sprint portion. It was the life or death sprint. And now we were really in this phase of life where it was the long term management of all this stuff, and that she was going to continue to have things pop up as she grew. And that it wasn't like this one and done situation like "yeah, we got to the top of the mountain we achieved that one year of life", which is like this elusive thing in our Trisomy 18 community that like less than 10% of those were born alive live to see their first birthday. So it feels like this huge, huge, huge milestone, but like I never really heard people talk about what happens after that. So I didn't really have anything to go off of and I think in a really naive way I think I was kind of hoping that that would be it. And then it would just be management of how she was then as she grew and the reality is that she has complex needs, she has a lot of rare diagnoses. I mean, she has over 30 at this point. And this is going to be a lifelong management of that for however long she lives. And I don't know how long that is going to be. I don't know what her life expectancy will be. And that uncertainty is there, ever present. And that's when I finally realized for myself, that if I was going to be able to be there for my kids in the way that I wanted to be, and to care for Ayana in the way that she needed me to, that I actually had to like, put myself into the equation and actually start taking care of myself, or I didn't honestly know how much longer I basically be able to do this before my body just completely started breaking down. And I think from the stress and everything from that year, it really started to hit, I started having several health issues. And I just started getting more and more tired. And so I started doing lab work and stuff and really started to see the tangible effects of what that first year and second year and all the stress and strain and stuff that had been going on, it had affected my body.

 

Madeline Cheney  21:16 

And I imagine that was really scary to be like, Oh my gosh, I need my body to be on board with this. I need to be able to continue to care for these girls. And like you're talking about how like so much of that load was on you. It was I guess that load was the thing that was wearing you down and breaking you down and burning you out. But that can't happen, right? I don't know, I imagine it was kind of a frantic feeling of like, oh my gosh, I need to figure this out. So I can be here and be capable of doing all of this.

 

Tiffany Pasilles  21:43 

 Yeah, because the alternative is, if I'm not taking care of her, she's at a care level that she would have to be institutionalized if someone else didn't step up to care for her. And that's a terrifying thought to think that your child now is going to be completely out of your control. And I will be honest, I don't feel like I have this figured out yet completely in terms of caring for myself. I feel like it's been a real evolution from kind of the beginning of 2020 is when it first kind of started. But this past year, especially I feel like the health effects of all the chronic stress and the sleep deprivation. And just all the doing that I have to do, because there's literally nobody else who's going to do it. If I don't clean the syringes, we don't have syringes. If I don't bring the water in, we don't have what like everything is on my shoulders to do. And so what I've kind of shifted into, and I don't think I felt like I gave my self permission to in the past, is just to start to see areas where I could potentially outsource or delegate or hire. And that's kind of what I'm moving into now is trying to create space for myself and to take some of the items off my plate, anything that I can do.

 

Madeline Cheney  22:58 

What are some examples of that? Do you mind, like sharing, like some things that you've done that with?

 

Tiffany Pasilles  23:03 

Yeah. So in terms of like cleaning, for instance, I've actually right now have been looking at house cleaners. Is there somebody that I can hire that can at least come and do like a deep cleaning, if that's all I can afford. And the biggest part of this has been financially I think, as a single mom, because I have to work there is nobody else. So when we moved from Texas to Arizona, that was a big part of it, because I knew that here they had parent caregiver programs, which could kind of help bridge the income gap until I could get to a space where I could actually start working full time too.

 

Madeline Cheney  23:39 

Is that where they pay you? Because like, oh, I left my job and now I'm the sole caregiver. So you get paid a salary for that?

 

Tiffany Pasilles  23:45 

You get paid hourly. You're basically instead of using a provider from an agency, you are the provider.

 

Madeline Cheney  23:51 

Okay.

 

Tiffany Pasilles  23:52 

Colorado has this program, Arizona has just got approved recently.

 

Madeline Cheney  23:57 

Wow.

 

Tiffany Pasilles  23:57 

And I think California has a version of it with their IHSS. And I think a couple other states do.

 

Madeline Cheney  24:02 

That's awesome.

 

Tiffany Pasilles  24:03 

But in terms of like being a single parent, I mean, that's amazing. That's something that can literally save lives, because otherwise I would have to go work somewhere. Someone would have to take care of her. But what if the nurse doesn't show up? Or what if they do a bad job? How do you sustain life like that? That's not possible.

 

Madeline Cheney  24:22 

My Gosh.

 

Tiffany Pasilles  24:22 

I'm one person. And in a two person household, like some of the families in our communities, they have to automatically go to a one income person, one of the parents will work while the other one takes care of the kids because care is just we all know there's a shortage or it's just inconsistent or different than the way you would do it. So that's what a lot of families do. But in my situation, who's that other person?

 

Madeline Cheney  24:46 

Yeah, it's like even worse.

 

Tiffany Pasilles  24:47 

Yeah. Oh my gosh. So it's like, you know, I have child support. He pays his child support and that paired with my caregiver program and then I have like little side things I do to try to like boost my income for when we need it. That's what gets us by. And I've had to think really long tail with this of what is the overall plan. I do want to go back to work and rebuild my business.

 

Madeline Cheney  25:12 

Can we like talk about that for a second to have just the identity shift that you had to have in kind of a brutal and quick way, when you did give up your business to care for Ayana. And to go into that mode of advocate and everything. I assume that because you were so competent in that field, and because you had your own business, like that will probably was a really big part of your identity. I think with that kind of thing. Also, it's like, yes, the work itself can have that huge sense of identity, but even just the fact that like you're working in getting paychecks and earning an income and like, can you speak to how that has been? Because I know that that's also something like you mentioned that not just single moms, but also just in...

 

Tiffany Pasilles  25:52 

women, yeah.

 

Madeline Cheney  25:52 

...two parent households, yeah, wouldn't where they give up their occupation to take care of a child that's medically complex?

 

Tiffany Pasilles  25:59 

Yeah, I think that's actually been a pretty hard shift for me. Previously, I had a corporate life and was investing in real estate, you know, it was just a really, really different lifestyle than my now to, then go to the extreme opposite, where the only way I was going to get the services I needed for Aiyana in Texas was to be below poverty level. So it was really challenging, and the sense of like, was my identity wrapped up in my job, or the money I made, or the status of where my life was at the time? Because if it was, my life is not there anymore. And that was the gap that I think I had to really come to peace with. And I feel like I am at this point. But in the beginning, that was pretty hard for me, because I grew up very low income, and had worked very, very hard to get education and go to school, and I have a graduate degree and to build a career, and then to build a business to a point where it was very profitable. I'd worked so hard for that. And I do think a part of my identity was in that. But what I think Ayana showed me is that maturity of growing beyond that, and that your identity isn't those things, my identity isn't even my children. I don't feel like in terms of her diagnosis, I do hear some parents talk about like, oh, I'm Trisomy 18. Mom, I do not talk about myself like that at all, intentionally, because I don't think for me that it's healthy for my identity to be in anything except myself and my faith, which is God. Because then the scenario of what happens when I on a pass isn't my identity is only in her diagnosis, like who am I then? If I actually feel like my identity was more so in being a wife, and when that was ripped away, swho was I then?

 

Madeline Cheney  28:02 

Yeah.

 

Tiffany Pasilles  28:03 

And I had to really wrestle with that, and get to a place of understanding of, I am still me, I'm still worthy. And I'm still enough, even if he didn't choose me anymore. Even if I can't work at the capacity that I have, even if I'm not doing the glamorous job that I used to do before, making all the money that I used to do before or investing. And part of this that's scary to me is like retirement, I lost all my retirement. And so I'm really starting over in that aspect. And it's hard not to be scared of all of those changes. You know, I have to constantly kind of take a step back and like coach myself through it of "okay, so if I'm feeling fear about this, then it sounds like it's something we need to do about it." So if I'm scared about my lack of retirement, what is my plan? Instead of just like sitting and wallowing in it. And in terms of the feelings I have about that wife title not being mine to use anymore, I started therapy to try to start working through those feelings and like getting to a place because that also affects my co parenting relationship, if I'm not feeling okay with that. And I also think, way down the line about future relationships, like how will I ever date? Will I ever marry again? Like, how do you do that with a child with medical needs? And so like, I dipped my toe into the online dating worlds, you know, a couple years ago and just put like a profile out there just to see what it would feel like and how would I talk about Ayana. And it was crazy. It was super crazy. And having those conversations about, like when you say that you have a child with medical needs, or you say have a child quote unquote, special needs. I don't like that term, but that means something different to everybody. And like they don't always understand the level of your child in terms of dating. If someone wants you to go on a date. I can't just go on a date. I can't just get a babysitter. Like, it's just a completely different lifestyle now, and I think I'm still acclimating to it in ways. But I feel like the best thing I can do is to support myself in it now. Because if I don't support myself through this, and that's through therapy, I have done different types of kind of like healing work, like digging into my story and trying to understand why I see things the way I see them, or why I feel the way I feel, stress management, meditation, drinking water, like eating healthy food, exercising, all of the things that are very, very hard for me to fit into our daily life. But if I don't do them. I do not know how I'm going to survive this lifestyle at this point.

 

Madeline Cheney  30:52 

Yeah.

 

Tiffany Pasilles  30:53 

And so at this point, I feel like we are actually kind of ready to take our next step, which is moving out of the RV into a home, I feel like we are in a place where I can finally do that without a lot of fear around things kind of destabilizing. And so we're getting ready to do that. And I've started to build in a little bit more support for myself into our day. And Leilani is about to start kindergarten, and Ayana is going to turn four. And I don't know I kind of look back over everything. And I'm almost amazed that we're even at this point. Yeah, I don't feel like there was a clear path to it. It just was kind of taking one step and reacting and taking the next step and moving forward little by little, but I know that we're here and we have gotten through it. And I feel a sense of comfort in that knowing that whatever happens in the future, that like we're going to find a way through it somehow. Because look at how we got through the other stuff that seemed impossible, absolutely impossible, with like, no way through it, it seemed.

 

Madeline Cheney  32:04 

Yeah, I think in that way, that kind of thing can be really empowering to be like, Well, if we got through that, then I really can get through anything. And kind of like we were talking about in the previous episode, it kind of helps you release some more of that control of like, okay, like, we'll see what happens. And I can trust myself now to take one step at a time and just figure it out, because you did it in this situation. And I imagine that like, obviously, you still probably have like, you know, that grief of like, well, we should have still been in that house. And I wish I could still have that job. And I wish all these things I wish I could still be a wife.

 

Tiffany Pasilles  32:41 

Definitely.

 

Madeline Cheney  32:41 

But then at the same time to like, look at where you are now and be very proud, right? To see like this life that you've built. And hopefully, I hear what you're saying, you know, this hope for your future of like seeing a bright future of what you can make of your life even further and rebuilding that life.

 

Tiffany Pasilles  32:58 

Yeah, and I think there's always going to be grief. We all know grief is not like this linear, you go through it once and it's over. Like, there's different things that pop up. Whether it's something with Ayana, seeing a neurotypical kid her age doing something and it pops something for me or seeing a friend or their husband or holidays or an anniversary, that type of stuff. Or even things like I see pictures of friends who go on vacation, because they have support around them to care for their kids so that they can do that for themselves. All of these things trigger and there's stuff that comes up. But I think for me, the biggest thing was learning how to address that when it happens and not ignoring it not pushing it away, not making it shameful. Like, how dare I be envious or whatever. And even not even putting that label of like jealous or envious because it's not that I'm not wanting their life. I'm so happy to have my girls like all I ever wanted my entire goal of everything was to be home and to have my two girls together and to see them together. That's all I ever wanted. I did not care about any of the other stuff around the circumstances of how that happened. Didn't care if we were like in a shack doing it or a mansion or an RV that I just wanted us together. And I want to actually have those memories and experiences of the two of them together for as long as I'm allowed to have them. And I don't know when that is going to be and so I feel like a responsibility to my kids and to ourselves to just do my best every day. I just try my best and like Sunday's my best is less Sunday's than it is on other days. And I honestly like I tell Leilani that some days like "mama is just really tired today. So I'm going to have to say no to this or I'm going to take things a little slower." And some days. I'm like yeah, let's go do this. Let's go do stuff. Let's let's get out of here and it's awesome. Like, I think the key for me has just been really, really kind of reconnecting to myself. And like relearning who I am, relearning what I like now, and relearning what I need now because that is so drastically different than it was before all of this. And honoring that, having that awareness, but then taking the next step, to allow myself the space to actually be whoever I need to be in that moment. And if the fatigue is really set in that day, and I need to somehow take a nap or find time to sleep, then I need to pare down our day. And like, say no to stuff. And that for me, you don't know me and these people listening don't know me, that is incredibly hard for me to do, because I'm someone who piles on stuff on top of stuff on top of stuff. And I'm just like, I will do myself into the ground, if I will allow myself to do that. And I've had to create guardrails for myself and I asked myself specific questions. How am I feeling? What do I need? That was like, mind blowing to me to even ask questions like that?

 

Madeline Cheney  36:03 

Yeah, well, I'm so excited to follow your story until I continue to be connected to you and watch that like, okay, like, I'm so excited to see, like, what's going to happen next year, right? Like your for like, what's going to happen? It's so exciting. So I would love to wrap up with a pep talk. I love doing this where you can give a pep talk to like that, Tiffany, that first found out that like your marriage is ending, and you're gonna be a single medical mom. And so this also goes well for like, women who are listening right now, who can relate to this situation? What would you like to say to that version of yourself?

 

Tiffany Pasilles  36:38 

As cliche as it sounds? I mean, if anyone had told me this, I probably would have gotten really mad at them. But honestly, it's like, you're gonna be okay. You really are. I know, it's painful. I know, this isn't what you wanted. And that's okay. It's okay to accept it, it does not mean that you want it. And it doesn't mean that you're allowing it. It's just a place of acceptance, which leads to peace. And the more that you just accept the circumstances, while still striving, you can still strive for what you're wanting, but allow that peace to come in. Because there's just so much strain in this life, in terms of the medical and for many people, co parenting, there's so many stressful aspects to it, like you deserve that peace. And honestly, I would say try to protect it as much as you can, because that's what sustains you.

 

Madeline Cheney  37:31 

Oh, I love that so much. You know, I'm so grateful that you came on to talk about this difficult topic. As you were sharing different things, I was thinking about a couple different single medical moms that I'm friends with. And I'm just so excited for people like them to be able to listen to this and know that they're not the only ones going through this, you know, navigating, obviously with their own details of the situation, but like generally similar principles. And I'm just so grateful. So thank you so much for coming on today.

 

Tiffany Pasilles  38:00 

Thanks for having me. It was a great talk. I appreciate it.

 

Madeline Cheney  38:03 

You can find links in the show notes to learn more about our incredible sponsor Functional Formularies. Be sure to enter our Facebook giveaway for a chance to win some product for yourself. I also want to put in a plug for the online therapy service Better Help. If you feel like you could benefit from therapy to work through whatever you're navigating, but don't have a way to sneak off to traditional in person therapy. This is a great option. Use the link in the show notes for 10% off and when you use that link. A portion of the proceeds go straight towards supporting the podcast so it's a win win. Join us next week for an episode with body image resilience expert Dr. Lexie Kite. We discuss ways we can help our children to love their disabled bodies for exactly as they are by doing some work on ourselves first. It's a dynamite episode. Don't miss it. See you then.

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Ep. 107: Season 6 Finale episode w/ Brittany season 6 finale https://d3ctxlq1ktw2nl.cloudfront.net/staging/2022-10-9/295951222-22050-1-4c66a0f45d1b8.m4a

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68: Dipping My Toes into Educational Advocacy

 

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