Summer Re-Run: ASK US ANYTHING: The Empty Nest I’ll Never Have

Hello Brave Friends! This is an Ask Us Anything episode in which YOU, the listener, get to write or call in and, you guessed it, ask us anything.

In this Ask Us Anything episode, #245, we’re responding to the question:

“Hi Dr. Zoe, Susanna and Jessica, I was wondering if you could shed light on us parents who will NOT BE EMPTY-NESTERS? I am struggling right now because I see friends who are so free and spontaneous and honestly, I am envious. As you guys always say, the grief buttons are getting pushed again. Thanks.”

In this conversation, Susanna Peace Lovell, Dr. Zoe Shaw, and Jessica Patay talk honestly about what it means to be a “forever nester”—a caregiver who may never experience the traditional empty nest. They define what empty nest and forever nest can look like, while also acknowledging that it’s not always a simple either/or; there are many unknowns, in-between seasons, and times when adult children launch and then return home.

Together, they name the complicated mix of emotions that arise when friends are traveling, retiring, or enjoying spontaneous freedom, while caregiving parents are still managing high-support needs, sleep deprivation, food vigilance, and constant responsibility. Jessica and Zoe share candidly about life with children who have Prader-Willi syndrome and the relentless focus on food and safety; Susanna reflects on lifelong rigidity, shame, and a longing to be more spontaneous. They speak to grief as cyclical, normal, and deeply human—especially when future dreams like travel, retirement, or hands-on grandparenting feel uncertain or out of reach.

The hosts also offer hope and reframes: the power of naming longings out loud, seeking pockets of “empty nest cosplay” (brief moments of freedom and joy), practicing radical acceptance of the life you’re living, and being intentional about creating memories and glimmers of joy right now. They remind listeners that wanting freedom, rest, and space is not selfish—it’s human—and encourage caregivers to seek support when resentment or grief feels overwhelming.

Keep the questions coming—we’re here to support you. Whether you’re a parent to a child with complex medical, developmental, or mental health needs, or someone supporting a caregiving family, we would love to hear from you. We see you, and we love you.

Leave us a message here.

Find more information about Licensed Psychotherapist, Dr. Zoe here. 

Find Dr. Zoe’s book, Stronger in the Difficult Places: Heal Your Relationship with Yourself by Untangling Complex Shame here.

Find more information about Life Coach, Susanna Peace Lovell here.

Find Susanna’s book, Your True Self is Enough here.

Find our first book from We Are Brave Together, Becoming Brave Together here.

Find our second book from We Are Brave Together, Suddenly Brave Together here. 

Find FULL episodes and clips of our podcast on Youtube here.

Brave Together is the podcast for We are Brave Together, a not-for-profit organization based in the USA. The heart of We Are Brave Together is to strengthen, encourage, inspire and validate all moms of children with disabilities and other needs in their unique journeys. 

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Transcript

SPEAKER_01 0:05

Hello, brave friends! We are taking a short summer pause, but we've handpicked some favorite episodes from past seasons for you to enjoy while we recharge and prepare for what's ahead. We'll be back on September 1st, 2026 with season 11 of the Brave Together Podcast, bringing you new stories, trusted experts, and practical resources to support your parenting journey. If these episodes have helped you, we'd love for you to share them with other parents, especially the ones that made you feel seen, comforted, or gave you helpful insight into the path of altered parenting. If you have questions, story ideas, or requests for future episodes, follow the links in our show notes. Wishing you all a very wonderful summer. And remember, Bravies, as always, we see you and we love you.

SPEAKER_03 1:20

It's so understandable that I feel this way. It's so understandable that I feel this way. I long for that, I wish for that, I want that, I want some freedom, I want to sleep. And, you know, just tell ourselves also not to get stuck if we are feeling resentful of people we know, you know, siblings of ours who are empty nesters, our friends, our best friends, whoever we see on social media living their best empty nester life. Like, let's make sure we don't get stuck in resentment. And if we are, then call for help. Call a friend, call a mentor, call a coach, call a therapist. Like, I am so stuck. And really, I think it all comes back to grief. Grief in this journey is cyclical and it's okay. Hi, Bravies. This is Jessica Pate, a mom, storyteller, advocate, and the founder and CEO of We Are Brave Together, whose mission is to preserve and protect the mental health of caregiving moms everywhere. And I'm joined by two fantastic fellow Brave Mom co-hosts to help answer your questions.

SPEAKER_01 2:29

Hi, I'm Susanna Peace Lavelle. I'm an author, a certified life coach and soul care coach, and an advocate for the health and wellness of disability families everywhere.

SPEAKER_05 2:39

Hi, I'm Dr. Zoe, a licensed psychotherapist, writer, speaker, author, and complex change expert.

SPEAKER_03 2:46

We are gathered here to share our experiences, share our wisdom, and answer your questions. Have a caregiving question? Find the link in the show notes to leave us your message.

SPEAKER_01 2:57

May you feel seen and heard and not alone.

SPEAKER_03 3:01

Ask us anything.

SPEAKER_00 3:07

Hi, Dr. Zoe, Susanna, and Jessica. I was wondering if you could shed light on us parents who will not be empty nesters. I'm struggling right now because I see friends who are so free and spontaneous, and honestly, I am envious. As you guys always say, the grief buttons are getting pushed again. Thanks.

SPEAKER_01 3:31

Hi, Jessica. Hi, Dr. Zoe. Hi. Hi, hi, hi. So good to be with you both. And hello, Bravies out there. I appreciate this vulnerable question. At least it hit me so personally. Kids are off to college, or they're off to the military, or they're traveling the world, or fill in the blank. And I feel like this hits home for the three of us here in different ways. It can be a really big pain point for myriad reasons. And so anyway, I'm glad to unpack this with you both today.

SPEAKER_03 4:04

I am too. I am too. And when we say uh we're empty nesters, it means we are a parent or parents at home alone without children living at home anymore. Whether that means, you know, forever, because they've moved out and launched, or they're they're all in college, or some are in college and some are launched and living elsewhere. And then when we say forever nesters, that means parents who are caregivers to adult children with disabilities or medical complexities, or high, high, high support needs, or intense mental health struggles. And then we just know that we will always be taking care of that adult as long as we're still here on this earth. So I just want to make sure everybody understood how we are defining this. I'm of the age where my my friends' kids are going to college and finishing college and moving out, and I am genuinely happy for them. I'm genuinely happy to see how their kids are growing and thriving and you know, flying and launching and all of it. And I wish I had some freedom. I wish I had less on my plate. I wish I wish for that empty nest. And when I'm in a really super sensitive space and I see people saying how sad they are about their empty nest life, I can get resentful if I'm being honest. And then I have to just stop and say, okay, what's going on with me? It's about the grief, it's about just really wishing, longing, and wanting to be an empty nester.

SPEAKER_05 5:53

I can so relate. You know, I feel like my experience has been a little bit different because I have such a large age gap. And so when my first uh son went to college, he was 18, but there was a 12-year difference um between him and my youngest. And so I grieved so hard. I cried for an entire year. I did all those things. And so I can totally I can I can understand. Um, and I know Jessica, you had you have older kids that went to college as well, but I understand that feeling of being sad about the end of your child's, you know, childhood and knowing that things are gonna change. Yeah. But it kind of didn't really occur to me because Sully was so young then either that, oh, this isn't gonna happen with her. And it wasn't until I really started seeing that big difference between her and her peers, like the gap just continues to grow and grow and grow, right? That it really started. Um, I just had that extra grief of watching her peers, you know, surpass her, and also watching her younger sister, who's seven years younger than she is, surpass her. Um, and slowly over the years it started to dawn on me. Oh, yeah, these things aren't gonna happen. There's gonna be no getting your driver's license and you know, no, you know, going to college, none of that stuff. Um, and now she's 19, she's gonna be 20 in a couple of months, and so we're beyond those those things. And I have a 13-year-old at home. So I still don't have that empty nest, but I know that those years, you know, we've got five more years before she goes to college. And so I'm really starting to feel that sense of what a lot of our our our Facebook mamas have talked about, and we'll probably talk about that, is but I want to be able to travel, I want to be able to just get up and go. Like my life is changing. And as a single mom, too, I, you know, I'm I'm dating and I'm I have a partner, I'm dating seriously. And as I think about our future too, I want to be able to have a future with him that's just us. And I don't know what that's gonna look like. I don't know if I'm truly gonna be a forever nester. And in many ways, we still will like even if she goes into some other, you know, residential space, there's still a lot more um parenting and being hands-on than than not. But I definitely have that sense of I want that. Like I have that dream of, you know, them launching and me and my partner being able to have a life together.

SPEAKER_01 8:29

I would also like to acknowledge that it's not a binary. It's not either you're an empty nester or you're gonna be a forever nester, because there are so many things that are up in the air, so many unknowns and uncertainties in this caregiving life as well, in addition to just wanting to also acknowledge those parents out there who were on this trajectory of having their child or children launching, as you call it, right? Launching. Um, and then for whatever reason, having to then come back home. And I can talk about, you know, various clients and other moms in my circle who have had this expectation, okay, we found this program, we found this post-high school program, whatever it is, everything is going really well until it wasn't by their definition. And then now that adult child has been home for the last five years, six years, 10 years, 15 years. And so then there's also that, there's another level of like, oh, but we've we've had this experience for a minute. And then it's now even when we're just meeting strangers out there and they're asking, like, what our kids' ages are are, right? And my daughter, Arizona, you know, people will be like, Oh, how you know, oh, your mom, okay, that's great. How old are your kids? And you know, I always have to say, Well, I have one, right? There's sometimes there's layers with that too. Oh, okay, you only have one anyway. Um, and and then it's like, Well, how old is she? Oh, she's 19. Oh, thank goodness. Oh, you're done. You know what I mean? I've heard that so many times. Like, oh, your daughter's 19. Oh, you're done. So where is she in college? She's not right. And then it it's like it could have been just like a quick conversation, and then I feel like, do I have to explain? I don't really want to explain. And right, depending on how I'm feeling that day, sometimes I'm triggered, sometimes I'm like feeling sad, sometimes I'm feeling an ache, sometimes I'm like, you know, go away, stop talking to me, random person, you know. Right. So all of the above.

SPEAKER_03 10:34

Very true. So, as you all know, I posted several months ago in our secret Facebook group that we have for We Are Brave Together. It's a great place to connect online and and share stories or vent or seek resources or share a win or victory. And so I was just feeling the the grief buttons because you know, we are far from being empty nesters, um, full house at the time with um three adult-ish children. Since then, my oldest Luke has moved out and is in his own apartment. It's very exciting, and he has you know a new job and all that. So it's very exciting, but still, and the house is still very full. And and with Ryan, who is my son, who's 22, he has Prader Willie syndrome. He might be with us forever, he might be with us a few more years, he might leave and come back. Like I I don't I don't know how it's gonna go. And I was just I was just feeling the grief at all. So I wanted to hear from our bravies, okay, how does this hit you? What are you thinking and feeling? What are you longing for? And maybe, maybe each of us can can take turns sharing some of those. One one mom said, I I want traveling not to be such a balancing act. If we want to take a couple's trip, we could just plan it and just go and not have to figure out the house and where our son can go and for how long. And it would just be nice to have an extended time away, not a day, not a one night away, but just be able to get up and go. Another mom said, I'm so tired. I'm so, so tired. And I would like to have the luxury of making plans without having to get coverage. So, like many of us, you know, we can't leave our kids 24-7. I I can't leave Ryan to run to go get gas really quick and be gone for 15 minutes. I can never leave him alone. Yeah, we would all like the opportunity to just spontaneously get up and go, whether it's to do a mundane thing or just be gone and go to the grove together and hang out and have a meal and go to a book event, right? Without having to schedule somebody for six hours.

SPEAKER_01 12:56

Yeah, and I well, I like, you know, she uses this word um very appropriately in terms of like, I wish I had the luxury because it feels so luxurious to us, right? It does. It does.

SPEAKER_03 13:12

I thought this was great. I wish I can experience could experience empty nesting because I want to run around my house with nothing on. I love that. We are going to take a brief break. Stay with us. Before the diagnosis, before the phone call, before the doctor walked into the room. That invisible threshold that divides a life into two distinct halves, and on the other side, a version of yourself you never auditioned for, doing things you never imagined you could do. You have been suddenly thrust into altered motherhood. Bravies, our second book is here. Suddenly Brave Together, letters to Caregiving Mothers at a defining moment in their lives, captures the voices of women who lived that pivotal moment written from a place of hard-won wisdom, decades in the making. Imagine 30 seasoned, savvy, compassionate moms reaching across the universe to share their stories, their transformations, and everything they wished someone had told them. This is not just a book, it is an open door. A reminder that somewhere in this wide world, there is a mother who has already walked the road you are on. And she is holding out her hand for you. Written with new and newer caregiving moms at heart, Suddenly Brave Together will validate and inspire every parent caregiver who picks it up. Grab your copy today. The link is in the show notes.

SPEAKER_05 15:20

Freedom in your house. And you know that happens, and and we don't even think about that. But yeah, couples after their children go away get to kind of re rediscover themselves and their relationships. And it can feel like you're being cheated of that when your children don't grow up and go ahead.

SPEAKER_01 15:44

Or you have, and or you might have this idea, okay, let's retire. And yet you can't because the bills are still the medical bills, they keep coming, you know, program bill, you know, not everything is always covered. You know, we are not so resourced all the time, and things are always changing too, in terms of what's available to our adult children. I mean, I feel like every day I'm learning about something new that's being taken away now that my daughter is an adult, you know, with disabilities, right? I'm trying to be as positive as possible. But like all of these unknowns are really hard. And I I remember thinking the other day, even though Arizona is 19 years old, right? She's not a toddler. She's not five, six, seven, right? She doesn't have those types of needs. But in terms of like my fight or flight and my anxiety and my, you know, having to be just so responsible for every tiny little thing, like emotional, uh, physical, physiological, you know, the food, right? The food stuff, um, in terms of Arizona and her allergies and just so many different things. I still feel like in my body, and again, I don't have a toddler, but I still feel like I am so locked in in the same way that I was when she was younger. So I feel like I have this, you know, I might be a forever nester. I don't know, right? That is not my wish. That is actually not Arizona's wish either, but I don't know. We don't know, you know, do I have a forever sort of uh dependent in so many different ways? Uh, you know, I just see that, I just see the different stages too, you know, with my siblings. I have, you know, so many nieces and nephews. It it's just like the different milestones. Like so many of Arizona's younger cousins are are driving now, right? That's a whole nother set of freedom, like in terms of luxurious freedom.

SPEAKER_03 17:45

Yeah, that's really nice when when Luke started driving, and then when Kate could drive herself everywhere.

SPEAKER_05 17:52

Yeah.

SPEAKER_03 17:53

It's life-changing, it's life altering. And and again, like those seem like such simple things, but they are luxurious. And I and I want to highlight there were several moms who said, I just want to be able to sleep an entire night. Yes. Wow. I mean, sleep deprivation is no of a joke. It is no joke. I feel lucky that yes, I have to get up early with Ryan. He's an early riser. Thankfully, I'm a morning, I am a morning person. I never sleep in, but he goes to bed so early. So, you know, he's not up till 10. He goes to bed at 7 to 7:30. Maybe the latest if he's watching sports with Chris or something, like he might be up till 8 or 8:30. He can't last. He's so tired, he's so fatigued. Sometimes he's gone to bed at 6:30. And I'm like, you know, I'm not even gonna wake him up. I'm gonna wake him up for a shower, whatever. Just let him sleep and we'll see what happens. And he's slept through. So just to be able to sleep, we have moms who are just wanting their kids to move out so they can just sleep.

SPEAKER_01 19:00

If we can remember how to, that is, because you know, even if you know, on the occasion that I do have lots of help, or you know, Arizona's with her father, and I can, you know, have a have a night um 24-7, 24 hours rather, or maybe even 12 hours to myself, I'm still up at like 5 36 because my body clock is has been so used to this for 19 and a half years. But it's but it's important to wish, it's a port, it's important to like name the things that we want to be um our experiences in this life. I think that's so important. I don't want us to ever stop thinking about like this would be so great. I am questing for this. Like, I can't wait to go on a two-week vacation and not have to check in with anybody.

SPEAKER_05 19:50

You know what's interesting is that that same woman who said she wants to be able to sleep an entire night immediately followed that up with, then I feel selfish for feeling this way. But I'm a little envious of my friends, right, that are empty nesters. And I just want to acknowledge that part, that part of you that wants to have what most people get to have. And it's like a normal part of life, right? Is you have children and you raise them and then you launch them. And to even feel selfish for wanting something that is kind of a normal part of life, I just I just want to give people permission to want something and to have that feeling and not feel selfish about it. That's the way it's supposed to be. And I say here in the States for sure, that's our culture. Like let's launch it out. Yes. And you're right, and plenty of other cultures, you have generations living in homes together. And you know what? That works also because that's very acceptable in the culture, and there's lots of support there. Yeah, um, we don't have that kind of support in our cult in our culture in this country. I we just have to acknowledge that, yeah, I have that desire and I have that wish, and I'm a little envious, and that doesn't make me selfish. It just makes me human.

SPEAKER_03 21:09

Human, yes. So we can all say, It's so understandable that I feel this way. It's so understandable that I feel this way. I long for that, I wish for that, I want that, I want some freedom, I want to sleep. And, you know, just tell ourselves also not to get stuck if we are feeling resentful of people we know, you know, siblings of ours who are empty nesters, our friends, our best friends, whoever we see on social media living their best empty nester life. Like, let's make sure we don't get stuck in resentment. And if we are, then call for help. Call a friend, call a mentor, call a coach, call a therapist. Like, I am so stuck. And really, I think it all comes back to grief. Grief in this journey is cyclical and it's okay. Grief in this journey is cyclical and okay.

SPEAKER_01 22:00

One of the things that I love about your new book, Dr. Zoe, around how you, you know, self-identify as a you know complex shame expert as a therapist. And I I think about some of the the replies from our community of mamas who are just like, I just wish I knew what it felt like to be spontaneous. Like I wish I could be spontaneous. And the reason why I'm bringing shame into this is because I grew up, you know, in a very strict household. And also my personality is very, it's not, it's not that fun. Like I just, I'm pretty rigid. Like I like things a certain way. I'm pretty easygoing in terms of like meeting all kinds of people. You could drop me in any country at any period of time and I would, I would figure it out. But I I do like a schedule, and you know, I my brain is a lot of spreadsheets that are open. And so I have heard my entire life before I even became a mother, like, you need to chill out, Susanna, a little bit. You need to relax, you need to have fun, take your hair down, go dance on a table. Like I've heard this my whole life, right? And now that I feel like, okay, I want to be more space spontaneous. Like I want to be able to say yes to the social events that are that I get invited to. Like I probably say yes to maybe 20%. You know what I mean? Because of all of the different layers that are required in terms of support and knowing that I'm going to be up early tomorrow and just all of the responsibilities that I have. Anyway, even though I have this desire to feel and want to be so spontaneous, I feel limited. And then I feel like guilty. I feel this shame around. Well, you were always this rigid person, so you don't get to be spontaneous now because this is how you set up your life to be, you know. It's just I I I'm so layered, I'm so complicated.

SPEAKER_03 24:00

We all are, Susanna, but you're being mean to yourself. I feel for you. Like you didn't set this up, you didn't ask for disability, you didn't ask for long-term forever motherhood. That's not your fault. You didn't bring that on, you didn't ask for that. Just because you, you know, run anxious. I run anxious, just because your schedules are natural to you and you're rigid about this or that. That that is completely separate. You don't deserve to be a forever nester because you've set up a very scheduled and structured life.

SPEAKER_01 24:37

Yeah.

SPEAKER_03 24:37

Amen. So you'll appreciate this. One of one of the bravies said, I just want to be able to eat or not eat when I want to, not on a schedule. Not as, you know, a fellow PWS mom. And I was like, Yes. Yeah, like if Chris and I get a night away, or if we've taken Luke and Kate somewhere, it's like, I don't even have to worry about it. Or if somebody says, can we order room service or something like that? The first time we ever were away from Ryan when he went to PWS camp up at Camp Harmon, up in Northern California, and we went to San Francisco. And I remember being in the hotel, all of us together, and Luke or Kate wanted to order pasta to the room. And we were like, it was a yes trip. We were like, yes. Eight o'clock at night, yes. Just the food freedom. For those of you who are out there listening, and what does this mean? And why are you talking about food and why it matters in PWS? Zoe and I both have children with Prader Willie syndrome. And in Prader Willie syndrome, you have an insatiable food drive. The body and the brain do not tell kids and adults with the syndrome that they've had anything to eat. So that coupled with underlying obsessiveness and anxiety leads to food-seeking behavior and it interferes with their lives and our lives all day long. So I live with a locked kitchen since Ryan was 13. I have to be very vigilant and make sure that everything is locked at all times, that I don't leave my purse that might have gum in it, you know, out. I hide it in the closet. We let, you know, our other kids have locks on their doors so they didn't get ransacked, you know, looking for food or gum or candy. And and our kids thrive on a food schedule. They feel more secure. We call it food security in the PWS world by having a food schedule, knowing not always locked into the clock. Some families are, some families aren't, but having a schedule breakfast, snack, lunch, snack, dinner. We don't do a snack before bedtime, we do a sip of milk. Ryan knows that it makes him feel secure that we follow the routine and we have since he was diagnosed at five weeks of age. It it would be nice to not have to think about foods. And the vigilance, of course, with which we live to keep our kids safe from eating themselves sick or into a medical emergency.

SPEAKER_05 27:01

Yeah. And, you know, I just I have to make a confession about our past year because Sully is now at Latham Center at a residential facility and she's been there for a year. And you know, these kinds of burdens that we carry, we get used to them. We know they're there and sometimes they really hit us and they trigger us. But this last year of having cabinets unlocked, refrigerator unlocked, not having to think about food, it's been amazing and it's almost scary because it's like, I don't want to get too used to this because Sully's coming back in two years and I don't know what that's gonna be like. But having her here over Christmas, you know, before she came, we locked everything up, reinforced the rules, reminded everybody, you know, what we have to do again. And we've gotten out of the habit of three meals a day. You know, my daughter sometimes she doesn't do breakfast, or sometimes we'll do bronze, like we've been so lax. And Sully came home for two weeks. And it's like, like right back into that routine. And I remember like halfway through the Christmas break, I thought, I'm so tired of food. I'm like so done with food, everything. It's like food, food, food. Either am I getting food? Let me make breakfast, lunch, dinner, winds break, you know, like all the things, making sure she has her snack. I was just, you know, I'd done it, I did it for, you know, 18 years. But being in that space for two two weeks back there, it honestly terrifies me when I think about her coming back home because I've had that freedom. And sometimes that freedom is almost worse because you know what, you know, what you've been missing. And I don't know what that's gonna look like when she comes home and if we're gonna, you know, what we're gonna do, but it's real. It's real.

SPEAKER_01 28:53

It's real. Yeah. And I hope that I hope I wish both things for for you to be true, and that you are relishing now in these moments of these little glimpses of, you know, my daughter does not have Prader Willie syndrome, but she has crazy food allergies, and she has since birth. So I think about food every day, all day. What's for snack, what's for dinner, what can she eat, what you know, what it and it and that is one of a it's a very prohibitive thing for us, just just you know, the the topic of food. So when I have moments to just enjoy, I I I just hope we can really lean into it. I just I just want us to be able to experience as much joy as possible in our lives, all of us please, right? Yeah, yeah.

SPEAKER_05 29:46

And even at the same time, you know, that I was tired of food, so tired of food. It's like I can't wait to not have to think about food. I so enjoy having Sully home, right? You know, there's that too. It was so precious to just be able to sit on the couch and hug her. And I miss her, and we miss each other, and yet that burden is still real. It's all all of it, all of it. It's wonderful at the same time that it's terrible.

SPEAKER_03 30:12

Mm-hmm. Mm-hmm. I want to bring up this. One of our moms said, I want to be able to schedule a knee replacement surgery. She's a single mom without having to figure out who and how someone can take care of my son while I recuperate. And I think about all the time, I can't get sick, nothing can happen to me, I can't be disabled myself, I can't get really, really, really, really sick because who is going to take care of Ryan? I I had a health scare last year. Thankfully, it was only a week and got okay results back. But when I was getting a biopsy, I was started crying on the table. And I said, I I don't have any margin in my life for this. Like I don't, I don't have any any room for this. Like I cannot get sick. I cannot get cancer. Like I cannot, this can't happen, you know? And you know, I think as we get older and we do need a knee replacement or a hip replacement or a this or that or whatever happens as we get older and we need some medical attention or what have you, or just, you know, God forbid we like fall and trip or whatever, right? And something happens, like, I can't afford to be on crutches, I can't afford not to drive, I can't, you know, just all the things, right? It's just a lot to think about when you think about the future.

SPEAKER_05 31:38

It's a lot to wonder and worry about. So as we're talking about this, I hope that people listening are feeling seen and heard and understood. And I hope that you're giving yourself some space to just feel the feelings. But I also want to interject hope because at the same time that, yeah, for lack of a better word, it sucks that we might not be able to have that experience of emptiness. How can we still experience hope and joy in the space of grief, right? Because what we're talking about is grief. Grief is just loss, right? And that's something that we have potentially. Um, some of us for sure we already know that we've lost that opportunity to have an emptiness, and some of us are we've got anticipatory grief, right? We we we're we're thinking that that's probably going to be the case for us. And so, how do we experience some joy and hope in the midst of grief?

SPEAKER_01 32:39

Certainly for me, I can speak for myself. I know that I had to make a conscious decision during this at some point in my motherhood journey, in my sort of extreme motherhood journey, um, in terms of like just having this epiphany one day, like, but I and I, I also want to be so happy and I want to experience joy. And I remember just really like just consciously having this desire uh when Arizona was younger and had received a diagnosis and everything, everybody, even the professionals were like, this is about to be your full-time job forever. And, you know, even you know, family members were like, Well, this is your sort of lot in life, and this is what you're here for. Good thing you're so capable, Susanna, right? And so I hear all of this, you know, information and word and words of like just basically saying, like, this is what you're meant to be doing, and you're so good at it. So why not just keep moving forward? And I just remember thinking, okay, but I want to be happy. I want to, I want to be of service, I want to be, you know, of course I'm a responsible mother and I, you know, want to be an amazing caregiver, all of these things, and I want to experience my own joy. I want to travel the world. I do. I it is a quest of mine. I want to be able to dance with my friends, you know, I want to experience so many different things that are gonna seem hard now, given that I have so much responsibility for this child who is who is my daughter, right? So I feel like I had to have this internal conversation with myself. And it kind of was like this aha moment where I was like, okay, but and for me, like I know that I'm responsible for my child, and I'm so excited to hear that you, you know, maybe there are so many more opportunities and possibilities available to her, right? And for me too, you know, for me too. And so I would just say that if someone is feeling paralyzed or stuck because they don't even know what it can be like for them to even experience like a little glimmer of joy, I think we start with the the the internal conversation of like, and here's what I would love for myself. I am so open and able and willing to receive joy in my life. We start there and then just see what happens. I mean, you know, I think what we we seek is seeking us at the same time. Um, but we just need to be brave enough to say, like, I am I am deserving of this. This is what I want. Um, it's not selfish, and I'm not gonna feel guilty about it. I mean, I I just said a million things that aren't necessarily so easy to do, but I just know for me, every day I seek out like one little thing, like what does joy look like for me today? Susanna, what can joy look like for me today? Turning my phone off? Yes. Right. Whatever, fill in the blank.

SPEAKER_03 35:52

I love that, Susanna. I love that. And I I you know what the term that comes to mind too is radical acceptance, is that the the sooner that we can just radically accept that this is what we're going to do and this is what we're choosing to do. It doesn't feel like it's a choice to be an empty nester, but sometimes it is. It depends on where you live and what resources you have and you know what's available in your state and and all of that. So I it's not completely just a choice for everybody, and you're choosing to be a forever nester. I but I think radically accept this is what we're doing. And I'm gonna be intentional and I'm gonna make memories. I you know, like I sometimes think going one-on-one with Ryan places is easier than going as a family. And he's he's great with me one-on-one. He's great with Chris one-on-one. And I I think I should just go and travel some of with him and visit some of my other PWS mom friends in other states, other places, and just give it a go and like have these little adventures with him. Yes, it's gonna be more work, but we can create some really cool memories and and and it brings joy to him and it brings joy to me. So I think it just we start with acceptance and then get intentional, you know, about having joy and having memories and having experiences.

SPEAKER_05 37:14

I love that. I love acceptance and intentionality. You know, the other thing that comes up for me too is find pockets, right? Find little pockets of space and time when you can kind of act like an empty nester. And I know that that thought is, but I have to do all of these things, but I have to get care and I have to do this. And yeah, you do, but maybe work on just reframing. And that goes to that, that that goes to acceptance, like, okay, these are the things I have to do to get some of that empty nest experience, right? And and and tell yourself, I get to do these things to get this in um this empty nest experience. Because if you can find those pockets, that just like what you said, Susanna, like find your joy anyway. And yes, it's gonna take a little more effort, but you can have some of those experiences if you can find the pockets, right? Mm-hmm.

SPEAKER_03 38:13

You know what it made me think of when you said that? We can cosplay being an empty nester. Right. You know what that term is like costume play, cosplay. Okay, so so my daughter Kate went to Maryland to visit a friend in college and then New York. And then Luke and I met up with her in New York, kind of around the time that our Manhattan Connection Circle launched. So it was so cute when she got there and she went, she went to campus with her friend, and she took a picture of herself in class, and she said, Look, I'm cosplaying a college student. And it was just it was the cutest thing. It was the cutest thing. Adorable. Because for our listeners, you know, my daughter's 20, she's not in college right now. She's figuring out what she wants to do, and maybe someday she will, maybe someday she won't. But it was adorable. She's like, Look at me, cosplaying being a college student. And so let's do that. Like, let's say today I get to cosplay being an empty nester, and and my partner and I, or my husband and I, or my best friend and I, we're gonna go like have brunch and mimosas or something at some place down the street. I don't know, whatever, right? Or I'm gonna go for a luscious walk with whatever. Like, let's cosplay being empty nesters and bring some of that joy into our lives, you know.

SPEAKER_01 39:29

That's exactly right. I love that. I I love that about the cosplay. You know, I have a daughter who is just all up into sort of anime and k-pop and different characters. She's a doll collector and she always likes to dress up like her favorite characters, and that's her reality, and that's what brings her joy. She has found a way to find the joy, right?

SPEAKER_05 39:51

Yeah. So sometimes we can dress up like empty nesters.

SPEAKER_03 39:56

Exactly. Exactly, exactly. You know, there it's an opportunity for self-discovery, even though our kids are with us. It's it's an opportunity for pursuing little interests or trying something new. Or Chris and I are trying to do some brain games together instead of turning on the TV at the end of the night. So we have some crossword puzzles. Was I ever a crossword puzzle person? No, but it's kind of fun to do it together, you know, like we can try new little things as if we were empty nesters and bring those little glimmers in, bring some beauty in, bring some joy in. I think it's I do believe it's possible. And and as you know, if you've listened to us long enough, we're so about me too, I see you, and what can we do with this? Right? What can we do with this? How can we reframe our and again not in the Instagram toxic positivity world? That's not what we're doing, but like you know, how can I grow from this? How can what's the best way I can go about this, even though I'm feeling all these feelings?

SPEAKER_05 41:06

Right, right, because you still deserve to live and love and laugh, even despite being a forever nester, right?

SPEAKER_01 41:18

Wow.

SPEAKER_05 41:18

Beautiful, beautifully said.

SPEAKER_01 41:21

And I would also offer that as we are living and life and loving, right? And being loved. How about that? I know for me that when my cup is a little bit more full, uh, when I'm you know seeking out those little opportunities, then I am such a better, you know, partner, mother, daughter, sister, friend, cousin, fill in the blank neighbor, right? We all need a boost. It's just a fact.

SPEAKER_03 41:54

Is there any longing or wish or thought that has come up for you as we've done this episode?

SPEAKER_05 42:02

I'm wondering about siblings, like what the sibling experience is when one of your other siblings doesn't launch.

SPEAKER_03 42:11

Mm-hmm.

SPEAKER_05 42:12

I'm just thinking about that, coming home to not the just the parents, but the triad. And you know, I know this is interesting. I know when my brother and I went to college and my sister was the last one home. I remember a sense of jealousy because I remember like her birthday, they gave, they got her like diamond earrings. She had they they had all this space and time to just give her, and she just got all the best when we went to college. I was like, why do you get to have all this? Um, but she had my parents to herself, you know, and I just remember a little bit of jealousy because I was a middle child, by the way. So my brother at some point got his parent, got my parents uh by themselves, and I never did. And so I just wonder there's so many things that are different for our children, you know, being siblings to someone with, you know, a disability or special needs. Um, so I just I don't know. That's the thought that just came to my mind.

SPEAKER_03 43:13

Well, I like that because somebody did mention this that, you know, when their kids have kids, their neurotypical kids have kids.

SPEAKER_05 43:21

Oh, yes.

SPEAKER_03 43:22

And they just want to be able to be a hands-on grandma and fund grandma and help out and support their kids and the grandkids freely without having to get coverage so that they could do that. I mean, I know Ryan would love to come, but I also know it would be easier for me to be able just to focus on the baby or the toddler or the school age toddler, whatever it is I'm futurizing. Yeah, I want to be that grandma. I want to be that really supportive grandparent and give that to my other kids, to Luke and Kate, if they choose to have kids, and not have to always worry about getting coverage so that I can go help them. Right.

SPEAKER_05 44:02

And you don't want them to feel like I can't get help from mom because of Ryan, because she's got to deal with Ryan. And so I don't have, you know, a parent who can be that hands-on grandparent. Yeah, it's it's both what we want and also you know what they want.

SPEAKER_03 44:17

What they want, yeah, and want and need and and deserve, frankly. Yeah. Well, for everyone out there listening, thank you so much. And just know that we feel things along with you, we think about things, we toil about things, we worry, we wonder, we what if, we do all of it with you and we care so deeply. Please remember to call into Speakpipe. It's our good old-fashioned voicemail. Leave us a question, leave us a story, leave us something funny and hilarious or embarrassing from the caregiving journey. We would love to hear from you. The link is in our show notes. And as always, we always like to end an episode with telling you that we see you and we love you. Thanks so much for listening today. Do us a favor and leave us a review and a rating so that this podcast can get into the ears and the hearts of more and more moms. Did you know that Brave Together Podcast is an extension of our nonprofit organization? We are Brave Together. We Are Brave Together serves an international community of caregiving mobs, offering support groups that are virtual and in-person, educational resources, and low-cost weekend retreats all over the United States. We've also published two books. Our first anthology of caregiving stories entitled Becoming Brave Together. Heroic, extraordinary caregiving stories from mothers hidden plain sights, and our newest release, Suddenly Brave Together. Letters, a caregiving bond, and a defining moment in their lives. Both books offer stories of hope, transformation, and encouragement and validation for every parent character. To join us today, go to WeARBravetogether.org. Our support and Mr. HUD awaits you. Brave Together Podcast is for entertainment and education purposes only. It's not a substitute for professional care and should not be relied on for medical or mental health advice. The use of any content on our podcast links to the show notes or on our website is to be done at your own personal risk. Please take out a professional to assess your own medical or mental health concerns because we are all beautifully complex, and the content of this podcast is for a broad audience.