The Untold Truth About Life as a Special Needs Mom

Summary

Podcast Title: A Place of Yes | A Grief Podcast
Episode: The Untold Truth About Life as a Special Needs Mom
Release Date: December 12, 2024
Host: Bright Sighted
Guest: Hilary Savoy

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Introduction

In this poignant episode of A Place of Yes, host Bright Sighted engages in a heartfelt conversation with Hilary Savoy, the devoted mother of Esme, a 13-year-old with special needs. The discussion delves deep into the complexities of parenting a child with significant medical challenges, exploring themes of communication, identity, grief, and resilience.

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Update on Esme’s Life

Hilary Savoy begins by sharing an update on Esme’s current life and development:

“Ez is 13. She is such a 13 year old. She is annoyed by me. She periodically wants to be really, really close and then not at all. She gets really emotional about things. We talk about cute boys a lot.” [00:28]

Hilary describes Esme as a vibrant and spirited teenager who is navigating the typical challenges of adolescence in her unique way. Despite her medical fragility and physical limitations, Esme exhibits increasing independence and self-expression, particularly through her interactions with others.

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Esme’s Communication Through Eye Gaze Technology

A significant portion of the conversation focuses on Esme’s use of an eye gaze device, a crucial tool that allows her to communicate despite being nonverbal and non-ambulatory.

Host:

“Can you talk a little bit about that eye gaze device?” [04:31]

Hilary Savoy:

“The eye gaze device is basically like an iPad-sized tablet with a second device that tracks her eye movements and translates them into commands on the screen. It’s like a mouse controlled by her eyes.” [04:48]

Hilary praises the device’s impact on Esme’s ability to communicate, noting its widespread use in various settings—home, school, and with family members. However, she also highlights the challenges, such as the device’s dependency on precise positioning and the physical effort required from Esme to use it effectively.

“It is really, really cool. And it's a wonderful device. I can't say enough good about these devices and how every single child who has difficulty expressing themselves should have the opportunity to try.” [05:07]

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Emotional and Psychological Impact on Hilary

Hilary opens up about the emotional toll of being Esme’s primary caregiver and the complexities of maintaining her identity beyond motherhood.

“When Esme isn't understood or isn't treated as though she understands, my hackles grow up like I am ready to fight because I know if she has communicated something, it needs to be respected.” [13:26]

She reflects on the difficulty of processing her grief and the constant fear of losing her child, especially highlighted by Esme’s recent experience with a severe seizure.

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Navigating Grief and Personal Identity

The conversation shifts to Hilary’s journey in rediscovering herself outside the role of being Esme’s mother. She discusses the struggle of maintaining her sense of self while being deeply intertwined with her child’s needs.

Host:
“How do you then be Hillary? You know what I mean? How are you not just like, and I'm guilty of this, like, oh, it's Esme's mom?” [15:00]

Hilary Savoy:

“It's something that I'm grappling with a lot because it is part of that separation that happens. As a parent, you have to ask yourself, like, what am I? Who am I? What do I do?” [15:28]

She shares personal anecdotes about feeling lost after her divorce and the challenges of delegating caregiving responsibilities, which led to moments of intense self-doubt and identity crisis.

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Dealing with Medical Emergencies and Fear

Hilary recounts Esme’s first generalized tonic-clonic seizure, a terrifying experience that underscores the constant vigilance required in managing her daughter’s health.

“EZ had her worst seizure that she's ever had in August. It was her first generalized tonic clonic seizure... I was looking at... I was looking at her during the seizure, but she didn't make a sound. That's the reality of the stuff that we're scared of as parents.” [19:03]

The discussion touches on the fear of Sudden Unexpected Death in Epilepsy (SUDEP) and the emotional strain it places on caregivers, emphasizing the perpetual anxiety that accompanies parenting a medically fragile child.

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Balancing Grief with Moving Forward

Both host and guest explore the delicate balance between honoring one’s grief and finding ways to move forward. Hilary speaks candidly about her coping mechanisms and the importance of allowing oneself to feel and process deep-seated emotions.

“When I imagine my life without Esme, the only thing that comes into my mind every single time is I imagine myself walking out into the ocean and never coming back.” [25:57]

She underscores the necessity of having supportive relationships where she can express her darkest feelings without judgment, highlighting the universal nature of intense grief in similar families.

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Reconnecting with Self and Building Relationships

The episode also touches on the theme of self-reconnection and building relationships outside the immediate caregiving role. Hilary shares insights into how she has begun to engage in dating and forming new connections as a step towards rediscovering herself.

“Maybe you're falling in love with you. ... Detachment from yourself that you build up in the process of taking care of a child... reconnecting with yourself.” [32:33]

This segment emphasizes the transformative journey many parents of special needs children undertake to reclaim their identities and find personal fulfillment beyond their parental responsibilities.

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Conclusion

The episode concludes with a powerful reminder of the profound love and resilience that defines Hilary and Esme’s relationship. Hilary reflects on the enduring impact of caring for a child with special needs and the continuous journey of navigating grief, identity, and hope.

“A lot of art, a lot of acts of service come out of pain... It might take 10 years of working on a foundation to be ready to feel okay.” [27:20]

Through her candid revelations, Hilary offers listeners a deeply personal glimpse into the untold truths of life as a special needs mom, advocating for understanding, empathy, and the relentless pursuit of self-discovery amidst adversity.

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Notable Quotes with Timestamps

• Hilary Savoy:
  “Esme is basically the coolest person that has ever existed... She is non ambulatory... she's tube fed.” [03:21]

• Hilary Savoy:
  “I wish I could climb into her body and her brain every once in a while and know at the same time.” [08:00]

• Hilary Savoy:
  “You are not the only person. And that grief can be bigger than anything you can imagine because it's the same size as your love.” [30:26]

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Final Thoughts

This episode of A Place of Yes masterfully captures the intricate realities of parenting a child with special needs. Hilary Savoy’s narrative is a testament to the strength of the human spirit and the enduring power of love and hope. Listeners are left with a deeper understanding of the silent battles and profound joys that accompany life as a special needs parent.

Transcript

[Sponsor Voice]

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[Hilary Savoy]

See DutchBros.com and I don't have other children and when I imagine my life without Esme, the only thing that comes into my mind every single time is I imagine myself walking out into the ocean and never coming back. That's just true. Like that's true. That's what my. That's what my head says. That's what my heart says.

[Host]

Welcome to A Place of Yes. A podcast about how I moved through my darkest hour. And for me, that was in channeling my grief into good. Welcome to the show. So this episode of A Place a yes is going to be two parts. In part one, this part we talk about Esme and we catch up with what she's been doing. We talk about being a special needs mom and finding our own identities. Next week, part two, we will talk about dating, building relationships after a divorce and all the things that come with it. Here is part one. So I am sitting here with Hilary Savoy. Many of you may know her as Esme's mom and she was a guest, one of our very early guests of season one of A Place of Yes. I've known Hillary for so long and I loved that conversation and so many gems came out of that conversation that, that still sit with me that I wanted to invite you back. We're going to do something a little different this time instead of kind of revisiting all of the things that we've done. I would love to just, just talk talk about what it is to be moms of special needs kids. Talk about what it is to be moms with kids growing up going through typical things in a very non typical way. Just see where that conversation goes. But first, will you give us an update on all things Esme?

[Hilary Savoy]

Of course. Always happy to talk about all things Esme. So Ez is 13. She is such a 13 year old. She is annoyed by me. She periodically wants to be really, really close and then not at all. She gets really emotional about things. We talk about cute boys a lot.

[Host]

Oh, that doesn't surprise me.

[Hilary Savoy]

No, no. She is very into the cute boys and you know, we're kind of going through this really interesting phase where she's increasingly independent and she's increasingly expressing herself and expecting to be heard. I couldn't be prouder. I mean, it's just I'm constantly telling her, like, when she expresses herself, I'm sure it annoys her, but even when you're telling mom, I'm doing something wrong, like, I. I'm so proud of that. I want you to keep that up.

[Host]

So can we, like, give the audience a little background in case they don't remember the episode? So give a brief history on Esme, because I know her and I know those moments where we never thought we would be here. And here you are talking about her communicating. So can you give a little background just for those who may not know?

[Hilary Savoy]

So Esme is basically the coolest person that has ever existed. It's just the rest of us are just. We just pale in comparison. EZ is a funny, smart, bright, energetic, persistent person. She's also pretty impaired. She is nonverbal, except every once in a while we get some kind of word or two out of her that we understand. I mean, she's constantly talking. It's just we don't understand what it is. She is non ambulatory. She can stand and take steps with support. She loves to do that. And she's medically really fragile. She's got lots of challenges. Neurological, pulmonary. She's tube fed. She had cardiac and respiratory arrest at 3 months old. Seizures started when she was 10 months old. So she's had a really long journey and a lot of times, yeah, that I didn't think we would be here at all, let alone hear with her able to say the smart things that she says with her now with her eye gaze device, which she uses to communicate often with a little bit of an attitude, as she should.

[Host]

She's 13.

[Hilary Savoy]

It's perfect. Yes.

[Host]

So before we go into some of all of these things that I want to break into, can you talk a little bit about that eye gaze device? Because I'm sure there are people listening. And I think this will be kind of our first big topic is how frustrated Esme gets because people don't understand, you know, how that must feel for her and also for you.

[Hilary Savoy]

So the eye gaze device is basically like you just imagine like an iPad kind of sized tablet. And at the bottom of it, there's a second device that looks back at her and tracks the movements of her eyes and translates that into like effectively like a finger touch on a screen. So it's like a mouse, but it's run by hers.

[Host]

It's amazing. It's amazing.

[Hilary Savoy]

It is really, really cool. And it's a wonderful device. I can't say enough good about these devices and how every single child who has difficulty expressing themselves should have the opportunity to try.

[Host]

Cause she uses it at school. She uses it with you. She uses it with other family members. Like, it's always with her.

[Hilary Savoy]

It's always with her in settings where it's feasible to use it. And so one of the challenges with eye gaze is that it's highly driven by her position. So it needs to be kind of 18 inches away from her face and kind of perpendicular to her stare. And that's a challenge for a child with a movement disorder who can't sit up always on their own, and she.

[Host]

Can'T adjust it on her own.

[Hilary Savoy]

Exactly. So at home, we use it. I have a large sort of arm that holds it over the ground, and she lays down and uses it. It's amazing.

[Host]

It's so amazing.

[Hilary Savoy]

And then at school, she uses it while she's in her wheelchair. It's also tiring. It's really hard for her to use it. If you can imagine having to scroll through and concentrate to the level that she has to pull up words, it can be really challenging. And so as a result, when she communicates something, you know that it's important.

[Host]

Yep.

[Hilary Savoy]

So while she uses the eye gaze device to communicate, we do something that's called total communication. So that means that everything could be communication. So often she can pull up a word, and that kind of gives us a general topic. And then there's a bunch of confirmatory effort. Like, I'll say, tap my hand if you like this, or tap my hand if mommy's going in the right direction. Sometimes she's not been doing hand tapping so much as kissing. When you get a yes.

[Host]

Okay.

[Hilary Savoy]

So she'll just take that every day, like, is mom right that you're wanting to watch Daniel Tiger? And she'll go, got it. But we. And we use index cards and all sorts of things.

[Host]

It's amazing. Just as sort of a sidebar, there's two things. One is, I'm so, like, profoundly proud of you as Esme's mom for figuring this out and for giving her this. This incredible gift of being able to talk. And then in the same breath, like, I talk about this all the time about two things being true. I'm so profoundly jealous and sad because I feel like. Like I didn't even know this world existed, you know? And. And Jake, when he Passed away, was four and so profoundly ill at that time. I talked about this with, actually, Jeff Ames on the show, and, you know, he talked a little bit about what if he had just hung on a little bit, right? Like, what if Jake could have just hung tight a little longer, different meds and just some of the things that, like, Tessa and Esme have been able to get to. I just wonder if Jake would have, you know, and there's no point in really going down that rabbit hole too much, but I do go down it. And when you're. When you're sitting here talking about that, I'm so happy for you. And I'm a little bit sad for me. I feel like I know that Jake had so much to say. He didn't have a way to get it out. And I just love that you figured that out for her.

[Hilary Savoy]

I think that this is the impact of not being able to communicate with your child in the ways that so many parents do. The impact of that emotionally is incredibly challenging. I am so grateful for the insight into Esme's mind, and I still mourn not being able to just have the type of fluid conversation that I would be able to have with a more typically developing 13 year old. And I actually had a moment the other night where she was sitting there. We had had a really good exchange about something. I don't even remember what we were talking about, but it was a really good exchange. I was looking at her sitting on the ground, and I'm sitting next to her on the floor, and she's kind of staring off. And I could tell that while I had accessed this little tiny bit, there were a million other things that were behind it. And she has to pick and choose, right? And she's so bright and she's so emotionally aware. I can't imagine what it would feel like. I mean, words fly out of my mouth a mile a minute sometimes because I have so much to say. And I think she and I probably have that in common. And I struggle with not being able to tap into that. I just, like, wish I could climb into her body and her brain every once in a while and know at the same time. Yeah, I'm so very, very grateful. And I know that, like, there were so many times that felt like it wasn't a possibility. More than anything, I just imagine how hard that must be for her.

[Host]

You know, when you were talking about that, I had chills a little bit, because we don't think about it, we just talk and how hard it must be and how she Must feel kind of conflicted too, to be honest. Right. Like she must feel so proud that you are understanding her and that she can have this. But there's also got to be that piece that's like, God damn it, I've got more to say. Yeah. Like, why can't you figure this out?

[Hilary Savoy]

Yes.

[Host]

And I think of that. And you had referenced this earlier when you were talking about her. So she's 13 and you said she sometimes communicates with like an attitude or with what I love about when you share those stories. And I think what's important for like our audience to hear and for people to hear is that, yes, she is, you know, has a lot of things, but she also is a 13 year old girl.

[Hilary Savoy]

Yeah. And she fully is a 13 year old girl.

[Host]

And I love that you keep that as equal to all of like the, it's almost, it's primary to all of the other things.

[Hilary Savoy]

Yes, yes. Yeah. And I think that part of that too is that she, in theory, like, she could be quite compliant. Right. Because I mean, she's 50 some odd pounds. She can't get up and walk out of a room. She can't yell, mom, I hate you. She can't demand attention in the same way that typical 13 year olds can. And so part of my role as her mom, I feel, is to like hold space for that attitude because that's normal and she's as deserving of that experience. And I remember it, I mean, sometimes I look at her and I remember in my body that feeling of looking at my own mom and being like, oh my God, could you be more annoying? Like, I think not talk to me.

[Host]

About what it's like because I think of people not in our world. And to some degree I've been out of this world for a long time because Jake's been gone 13 years. But I know even back 13 years ago where people just assumed that Jake had no, oh, he can't talk, he can't walk, he's got nothing to say. Brian and I would know that he would have things to say and, you know, we'd be feeding him and he made it clear when it was time to stop feeding him, even though he couldn't typically do it, but he could just stop eating, you know, like he could do stuff. She must encounter it and you must encounter it where people don't believe the eye gaze device or don't believe or do they think you're putting words in her mouth. Like, does that happen?

[Hilary Savoy]

I think so. I mean, I think that it's so easy to assume. And because of the way that we're socialized as humans, the way that you demonstrate that you know something is that you talk about it. Right. And so I think it's really hard when you disconnect someone's ability to expressively communicate what they're thinking and what they know. And so it becomes really hard, I think, for people to understand that those two things are not equivalent. Right. Someone can have a whole interior life that they don't express or can't express easily. I think we're really lucky that we've gotten to a place that like Esme, undeniably, multiple people have had really powerful communication with her. So at school there's multiple people who communicate with her all the time. At home, she's had multiple caregivers that communicate with her. And her expectations that people now understand her and respond accordingly have gone up. But I do encounter moments where it's clear that her communication is not seen as meaningful or holding the same weight that someone else's.

[Host]

And that's gotta hurt her and you.

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[Hilary Savoy]

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[Host]

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[Hilary Savoy]

Then he told everyone how much he loved calculating his return on ad spend. My friends still laugh at me to this day.

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[Hilary Savoy]

When Esme isn't understood or isn't treated as though she understands my hackles grow up like I am. I'm ready to fight because I know if she has communicated something, it needs to be respected because she has decided that that thing is worthy of her energy among all of the other things that she could communicate about with her. I mean, I see her wilt sometimes when she's not understood or not believed. And part of that process is it's building out these trusted communication partners who then sort of advocate for her. And she's really lucky. She's got a caregiver right now who advocates for her when they are a partnership and she's had other partnerships like that. She has a lot of support in her communication, but it requires someone to click in and engage and believe it. And I think she's increasingly aware of that. Yeah.

[Host]

When you just use those words, right, that you can see her wilt, like, it's so heartbreaking.

[Hilary Savoy]

It's awful. And part of that is that because I've communicated with Esme for so long in so many ways, I'm so, you know, clued into how she communicates in all of the ways that she does. And there are subtle things sometimes. I remember writing once, a piece I wrote a while ago that I felt like a maternal seismograph. That her body against mine, the way that she moved, the little sounds that she made. I had to be so attuned to them. And so, yeah, I see a little shift in her posture, and it's like I can see her mood change across the room.

[Host]

And that, I think, sort of segues into another thing I want to talk about, which is this idea that it's like a motherhood idea, but it's amplified so much. But this idea that you are, like, the person and, like, the vehicle of her communication and the person who knows her most. How do you then be Hillary? You know what I mean? How are you not just like, and I'm guilty of this. I'm like, oh, it's Esme's mom, You know, like, you are Esme's mom, but how are you Hilary, too?

[Hilary Savoy]

It's something that I'm grappling with a lot because it is part of that separation that happens. I think, as you say, it's very natural in motherhood that your parents, your children start to need you less. And as a parent, you have to ask yourself, like, you've gone from this heavy duty care to them, like, not wanting to be around you so much. And it's different when you have a child who's really disabled because she still needs me to be around her, even.

[Host]

When she doesn't want.

[Hilary Savoy]

Even when she doesn't want me there. If I'm doing my job as well as I can, that means inviting other people in to help fill those needs, like caregivers, who she chooses to help make that space. Then I'm stuck back at this question of, like, well, if it's not my job to be 247 focused on Esme, I mean, I am anyway. What am I? Who am I? What do I do? And Esme's dad and I have separated and since gotten divorced. And actually, some of those first days that I was out of the house and he had her, I was so confused and disoriented that I would literally go to the apartment that I would go to when he was with her and sit on the couch. And it was like, when I Think about those moments. It's like a movie scene where, like, just imagine me sitting on this flower print kind of peach and pink couch, and, like, just watching the day go by. The shadows, the shadows cross the room. And, you know, I've been sitting there for, like, eight hours trying to decide what to do. I hope it wasn't ever eight hours, but let's pretend. Put them in, you know, and, like, not, like, literally not understanding who I was. It's been challenging to sort that, you.

[Host]

Know, as you were talking, one of the things kept coming in my head, and it was. I was kind of back under being like, Jake's mom. But that piece of 247 that so many moms can relate to. But the piece that you didn't say is that it's also your job to keep them alive. And that is so all the obvious words, right? Like, it's hard and it's stressful, and it's like the pit in your stomach that never goes away. You have to trust other people, right? Like, you have to trust her father, her caregivers. It's okay. Like, it's the right thing to do. It's the right thing to do for everybody and mostly you, right? Because it's the right thing for her.

[Hilary Savoy]

And that's. I think that's what's. This is, the tricky bit is that the way that I can justify it is not so much that it's the right thing for me, but that it's the right thing for her. In fact, in some ways, it's not always the right thing for me. Like, I'm a terrible sleeper because I have spent 13 years afraid my child was going to die in her sleep, being woken up by her crying in the middle of the night and being worried and just, like, listening for her breathing and watching her pulse ox and, you know, all of that stuff. And I tell people, they're like, oh, you probably get some sleep when. Like, when Esme's with her dad. And I'm like, no, actually, I sleep less. Well, because at home, when she's at home with me, I have her monitor on all night, and I sort of come to a little bit, I hear her, and I fall right back asleep. When I don't have her, I still have all the same wakeups. I just don't have the soothing knowledge that she's right there. And so I wake up more. And I know that sounds counterintuitive, but it's just how it is.

[Host]

I understand it. Because when you're so used to being that person, even with Brian and us, you know, in the same house, like trusting someone else with your medically fragile child, I think is the hardest thing.

[Hilary Savoy]

Yeah, I guess I could have put this in the updates, but EZ had a pretty. Had her worst seizure that she's ever had in August. And it was her first generalized tonic clonic seizure. So she's always had focal seizures before. So that means, you know, while they're pretty, they're also very rough. It's more like the repeat of them. And she would desaturate and get quite pink, quite purple and blue, you know, but they were always short and self contained, and they weren't as violent as the kind of seizures that you're used to seeing, like on tv. But this was her first generalized tonic clonic. She, you know, fully went foaming at the mouth and, you know, it was awful. And it happened that she was right next to me and I was. I had had her up a little bit past bedtime, just a little bit, because she had just come back to me and I was getting everything settled, and it happened that she was right next to me, but she didn't make a sound like, this is the very real. Like I was looking at. Okay. If this had happened in the middle of the night, I would not have heard her. I think, you know, that's the reality of the stuff that we're. We're scared of as parents. And it's not like a crazy thought. It's. It's a thing that happens.

[Host]

It's so real, you know, so when. When Jeff was here, he was talking about tessa, and she's 22 now, which is wild.

[Hilary Savoy]

That is wild.

[Host]

That is wild. And every time they check in with Dr. Pduri at Boston Children's, she reminds them that Sudep is the number one, you know, the. The thing you got to be scared of. And Sudep is the. See if I get this right. Sudden, unexplained death by epilepsy. I do. It's exactly what you just described. So without staying in this moment for too long, because it's like it gives me sort of this feeling, and I can only imagine what it does for you. But how do you work through that? Because how do you. Like I remember things with Jake where then I just would go crazy, like, what if it was when he was sleeping? What if it's at someone else's house? What if, like, how are you handling it and processing it? And do we know why it happened?

[Hilary Savoy]

So how am I handling and processing it? Probably not well.

[Host]

If you were processing it. Well, I'd probably be more concerned.

[Hilary Savoy]

Yeah. I mean, I think it's, you know, I don't let go easily. I'm a person who, like, you know, I want to know that I've done everything that I possibly can, and keeping Esme safe is the thing that I have probably done best in my life. There's a limit to that. And there's a limit for all of us, right? There's a limit for all of us. It's definitely taken me to a couple places.

[Host]

I would say it's impossibly hard. I'm going to switch it a little bit. Do they know why it happened?

[Hilary Savoy]

It's hard to know. I mean, as has breakthrough seizures, you know, every six to 12 months.

[Host]

But like you said, kind of. You've always. You're comfortable with those, right?

[Hilary Savoy]

Those ones I've been comfortable with. This one was very different. And there are probably some factors that we can identify as suspicious for why it went that way and know.

[Host]

Probably never know anything.

[Hilary Savoy]

Never know exactly. But she was fatigued, and she is 13, so there could be a hormonal component. You know, just. It's hard to say.

[Host]

It's hard to say. Jake was always seizing one way or the other, and they were not the typical. They weren't the generalized big seizures, but there was always. So it's like Brian and I were very laissez faire about it. We're like, oh, just a seizure. So I'm like, oh, but the ones you're used to. Like, that's. And it's. When I think about some of the differences in the kind of parenting we've had to do versus others, it's not normal to be like, oh, but those aren't. You don't worry about those seizures, do you?

[Hilary Savoy]

I know those seizures are fine.

[Host]

You're used to those. The devil I know I can handle. I don't like it, and it still scares me, but I'm here for it.

[Hilary Savoy]

You know, what it is.

[Host]

But one little thing would come out different, and it's almost like it would reawaken all of those fears.

[Hilary Savoy]

Well, what it is, is trauma response. Right? Like, humans are incredibly adaptable. We are really, really good at dealing with the most absurd things. And so you just get used to what you get used to. At that point, you're living in trauma, and your job is to identify the blips that are different from the type of trauma. That's normal for you.

[Host]

Yeah, you're normal.

[Hilary Savoy]

Even if for someone else, that trauma would be like, it would be huge, or the thing that's now a big thing for you, you know? Esme's first generalized tonic clonic. I know how lucky I am, full stop. I count myself as lucky that I have a daughter who made it to 13 and only had her first generalized tonic clonic in my friend group, in my communities. That's lucky. Absolutely lucky. And I felt almost. It's terrible to say, but I felt almost guilty, you know, being so upset over, like. So she had a 2 1/2 minute generalized tonic clonic. It scared the bejesus out of me. And I've got friends who've watched their kids seize for 45 minutes, who've seized so badly that their bones have broken. So relatively, I'm gonna say I'm lucky, but I get that most people.

[Host]

Most people, well, it's like I still catch myself, though, in that world, right? Where I'm like, oh, you know, so it's a seizure. One of the things, and this is sort of the transition to, in my world of like, the Jake versus Ethan's bomb, is you talk about, you know, talk about the fear, and you talk about the fear, and it's the same, but not the same. But when you're. When you were talking about when EZ would first be at her dad's house and you would be at the apartment, and you're trying to fill that space, and I didn't see this coming, but when Ethan went to school, much better this year at it, I would say. But last year, I had those days where I would. I would sit on the couch and I knew I had work to do, and I knew I had things to do, but I didn't know how to do them because everything had shifted in my world, Right? So it is that very weird feeling, you know, looking back on that year now, and you kind of said, like, trauma response, and jokingly would call it, like, ptsd. But I almost feel like it was because it was how I had to acclimate after Jake died. And my rational mind knew that this was not the same thing. Like, yay, Ethan went to college. This is a good thing, you know, But I couldn't. I got stuck. And it took me again, much better at this year, but it took me a long time. Like, I got a little used to it again this summer. But, like, he's. He's. Bedrooms across the hall. I would know he's there. If I know he's there, I know he's safe.

[Hilary Savoy]

So what did you do? You started a podcast.

[Host]

What I Do I talk about all the things now? I fill my time talking about all the things.

[Hilary Savoy]

This is who you are now.

[Host]

Exactly.

[Hilary Savoy]

But it's actually true. I mean, I'm convinced that I started a whole entire foundation just to avoid feeling the feelings that I needed to feel. When I stepped down from the day to day running of my foundation, I experienced a little bit of another round of like, who am I? What do I do? What is my purpose in life? It was very, very disorienting, and I also experienced a flood of emotions. It was like, you know, nine years of doing this role and staying as strong as I could stay and trying to show enough emotion that I could explain to people why this was so important, but not lose it.

[Host]

Yeah.

[Hilary Savoy]

The first few times I spoke again to the community that my foundation served, I struggled to maintain my composure in a way that I had never done before. And I was sort of forced to realize, like, yeah, okay, you. You have been avoiding this. You've been avoiding these feelings.

[Host]

It's interesting as you're talking about that and your foundation, the super cute.

[Hilary Savoy]

The cute syndrome.

[Host]

The cute syndrome. I was like, I know I'm wrong. I'm so close foundation. It's. Now I'm being slightly reflective. And I was like, you know, like, Jake died in December. By March, we had our 501C3 and we were up and running.

[Hilary Savoy]

Yep.

[Host]

I would say that's probably, you know, the start of my avoidance.

[Hilary Savoy]

Yeah.

[Host]

And then we continue it, and then.

[Hilary Savoy]

Ethan gets a podcast. We're being funny about it, but I think that there's a couple of really important bits to that. Right. That I think a lot of beauty in this world, a lot of art, a lot of acts of service come out of pain. Some pains are so big that you do have to slow roll them out. It might take 10 years of working on a damn foundation to be ready to feel okay. I've got this perfect, beautiful child whose life is filled with pain and difficulty and challenge. And, yeah, it's probably taken me 10 years to be ready to feel it.

[Host]

I think it's very true. And I think also some of those pains, like you said, they're so big. And you have to figure out. I remember for me, when Jake died, I was afraid of it. Right. Like, I was afraid to lean into it because I didn't think I would get out of it. And I was talking to someone earlier this week about that. It's interesting because some of the take is like, just lean into it and go there. I have been in that Dark space. But I know. I feel like if I'm there too long, I'm one step of never being able to get out of it. And I used to think that in those days, too. Like, I have to very deliberately put myself in a position which maybe is some avoidance, but because I don't want to just live in that darkness. And I think if I'm in that darkness, am I going from everything, am I going to be destructive? Am I going to destructive to myself, to my relationship to my other son? Like, do. I mean, like, that pain can be so big, and if you lean too much into it, it does scare me. Like, it does. And I don't want to be that person. So there's part of me that has to balance that line of not being, like, cold and not feeling. And it's funny when you said that, because I can talk so much about these things and not shed a tear, but then I can shed a tear. Like, Brian will laugh. Like I am the person who will cry at the dumbest effing commercial on tv. But I think it's the way that I sort of let the emotion out in a very guarded way because I don't trust myself. Like, if I go into it this deep, even all these years later, I just. I don't know that I'd pulled myself out of it.

[Hilary Savoy]

You need a release valve. We all find them in different ways. I mean. Yeah, I mean, it's something. I think that darkness, again, we don't do ourselves the service always of talking about how deep and dark that darkness is and can be. And I remember saying to someone who I love and trust very much and has been a longtime friend a bit ago, that, you know, when I imagine, especially now, you know, I'm no longer married, happily no longer married, but at least you know, that that was a. That is always a tie. Right? And I don't have other children. And when I imagine my life without Esme, the only thing that comes into my mind every single time is I imagine myself walking out into the ocean and never coming back. That's just true. That's true. That's what my. That's what my head says. That's what my heart says. I think a lot of people in our types of family feel things like that. They're afraid to say them out loud. And it takes people who are willing to say those things out loud to remind everybody a. If you're feeling those sorts of things, you're not the only person. And that that kind of grief can be bigger than Anything you can imagine because it's the same size as your love, right? And two, if you're somebody who has somebody in their life that looks like you or like me, you know, you might need to give them a space to feel those things and to talk about them. And to.

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[Hilary Savoy]

But to know that there's more there and I think that's, that's important you.

[Host]

Touched on something really important there because I don't know about you, but, but with me for sure, it's like you don't always want to go there with people because they don't know what to do with that, right? Like, and nor should they. Like, I don't want people to understand that darkness and that pain. So you kind of can make it lighter with that. It's like this trade off all the time and you have to have those people where you can say that to and you can process that and you can work through that. When you said that to me the first time when we were on the phone, I picture it right, like, because I know that feeling. It's like I just, I know it and I hate it. And you have, you know, and you've got to balance that in your life with all of the other things that are it. I sometimes used to think of it too as this. Like, when Jake left, it's almost like I felt like I was weightless and I would just like fly away. Like, I pictured myself like a balloon. Almost like, just like in that, like, slow rise that you kind of watch until you can't see anymore. When you talk about, like walking into the ocean, that's kind of what I picture because it's like everything that is you is different. And that's this whole conversation, right? Like, who are we if we're not these people? I don't think I did a great job of knowing that at the time. And it's taken me all of this time to figure it out and to see it. This sounds weird, but not to see Jake. I don't mean that Jake's death was a gift. That's not what I'm trying to say, but my relationship with him and what I've done since that has helped me become this version of myself that when I look in the mirror, I kind of like, you know, and I'm okay with the darkness that exists. You know what I mean? But I'm also good with the. With this version.

[Hilary Savoy]

Yeah. And I think what's interesting, too, is, like, what we're describing of, you know, realizing that there are places where you can talk about this and places that you can't, sometimes places that you can't. But shit, it's coming up and it's going to happen. It's masking. Right. Something that I've been thinking a lot about is, like, how much energy I've spent in sort of slow rolling who I am so that it's, you know, acceptable and trying to be sure that, you know, oh, is this. Is this the kind of place where I can make a joke about that painful thing or the place where I can be honest about that painful thing, or the place I can express fuller emotion? And what I've started to realize is that, like, all of those places are the same place. Right. Like, we just have to allow ourselves to be who we are and feel the things that we're feeling. One of the ways that I've started to actually sort of play with that and understand that it's all me has actually been through dating and getting to know people. And I remember saying a guy that I dated for a while telling him, oh, I'm really lucky. I've met and fallen in love with two men since I left my marriage and went on to list all of the wonderful things about those two situations. And at a certain point, he said, well, Hillary, I'm going to challenge you here. I get that you have met and fallen in love with these two men, and he was. Him being one of them. And he was like. But maybe it's that. Maybe it's you. Like, maybe you're falling in love with you. And I found that to be really profound. I've thought about it a lot since, because I think that detachment from yourself that you build up in the process of taking care of a child who literally needs you to be on all the time or they may not make it, and all of the protective stuff that you put on to navigate, that you disconnect from yourself in the process of reconnecting with yourself, there is this possibility of getting to know yourself in a way that's filled with love and.

[Host]

Acceptance that made me think of so obviously not Dating for me, but something that has become very deep rooted and very, like, dramatic is not the word, but so important to me over the last, I don't know, year. And maybe it's all of this talk of grief and all of this talk of, like, things that I've done on this podcast for the last year that, I mean, I've talked more in the last year about all of these things than I've done in the previous 13. But what has become profoundly important to me, and I'm trying to think of it in the ways that you just said it, but is spending time with the people in my life that I am organically, completely, truly myself.

[Hilary Savoy]

Yes.

[Host]

In some of these experiences I've had in the last stretches with, like, traveling with them and taking these fun weekends and making the time to be with them, I have enjoyed myself as much as I've. I enjoyed being with them.

[Hilary Savoy]

Yeah.

[Host]

And so, so I understand what you're saying and what he said, and I think that there is really something about that because we live these lives. When you're taking. When you're, when you're being a mother, especially when you're being a mother of someone with real medical challenges where you're just on all the time and you're who they need you to be more than who you need to be for yourself. And then when you have this opportunity to just almost say fuck it and just be who you are, you kind of find you like yourself.

[Hilary Savoy]

It is. I'm happy you're not figuring this out by a dating.

[Host]

Well, that'd be awkward.

[Hilary Savoy]

Brian's awesome.

[Host]

Brian, don't listen.

[Hilary Savoy]

Yeah, Brian is awesome. And certainly relationship goals for sure. There's a lot of the, like, not so awesome stuff about dating, too. I'll just leave it out there. But.

[Host]

Thank you for listening to A Place of Yes. Please follow us wherever you listen to your podcasts. If you really like this episode, please share it with a friend. It would make a world of difference if we could just reach more people and share the work that we do and the stories we want to tell. Thank you so much for watching.