Emily K. Whiting: Love, Impact, and the Work that Continues

January on Empowered by Hope is dedicated to something we talk about often but live out imperfectly: self-care. Or, as we prefer to name it in medical-parent reality, self-preservation — the small, necessary choices that allow us to be the parent advocates we want and need to be.

This episode opens with a deeply personal conversation as we honor Emily K. Whiting, our incredible co-founder of Parent Empowerment Network and co-host of Empowered by Hope. Emily shares her decision to pause her formal role with the organization and the podcast in order to focus fully on her family and the ongoing complex medical needs that first inspired both PEN and this podcast.

This is not an ending. It’s a season.

We name a hard truth with compassion: when hospital days, surgeries, advocacy, and parenting stack up, something has to give. Choosing family does not mean abandoning a mission — sometimes it means protecting it in a different way. Emily’s decision reflects the very values PEN was built on: discernment, courage, faith, and honoring what each season requires.

From there, we zoom out to the larger story you helped build. What began as a kitchen-table idea has grown into a global community across 18 countries. We revisit why being diagnosis-agnostic matters, why undiagnosed families must always feel fully included, and how that commitment led to one of our proudest outcomes: connecting Hardikar families worldwide, supporting expanded research cohorts, published guidance, and a first-ever family gathering. It’s one powerful example of what happens when determined moms, loving families, caregivers, and clinicians move together — faster answers, clearer direction, and a quieter kind of hope that lasts.

In true Emily & Ashlyn fashion, this episode offers listeners powerful takeaways as we get practical. If “self-care” feels like another impossible task, we rename it self-preservation: being honest with ourselves about what must be prioritized right now and what might need to be paused or tabled for a season. The mission continues with open hands. 

Expect more empowering and honest conversations with medical parents who truly understand, trusted subject-matter experts and credible voices diving into the topics you’ve asked for, shared resources that make the journey a little lighter, and plenty of love, laughter, and support — the same steady presence this community is built on. 

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Transcript

Welcome And Mission Reset

SPEAKER_00 0:13

Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while, Empowered by Hope is here for you. Though we wish you didn't know this heartache, we're so glad you found us. So together we can walk this journey in hope.

SPEAKER_02 0:34

Hello everyone. Welcome to Empowered by Hope Podcast. It is your co-host, Ashlyn and Emily. And right now, whenever you're listening to this, for us, it is January 7th, 2026. Which is crazy to think. Because, oh my gosh, Emily, we first started having conversations about podcasting in 2021. I just Emory and Eden were both little adorable babies, and we were still traumatically uh captured moms on a mission to do something with our trauma and turn it into something powerful, empowering, and just like a big giant emotional hug of support for anyone. Everyone, right? Yes, absolutely all hope filled, hopeful mindset. And oh my gosh, I literally just realized it's been since 2021. So this is technically going on five years that we've been talking about this. How crazy!

SPEAKER_01 1:50

That's awesome. And I also over 80 episodes. This will be like 84, 85 whenever you post it. It's amazing. That's right.

Growth, Community, And Gratitude

SPEAKER_02 2:00

And we have uh last time I checked, we're over 6,000 listens or downloads of episodes. And so uh, first off, thank you to anybody and everybody who has ever listened to an Empowered by Hope podcast or shared an episode, referred somebody to it, um, provided encouragement back to us because this podcast is not just so Emily and I could talk as two moms who became like absolute life support for one another and developed a sisterhood at a soul level that will forever and always be, thank goodness. But we did this because we wanted to connect with and be as available as possible to anyone and everyone on the journey of pediatric, medical, what the hell just happened, diagnosis or no diagnosis. Um, what is this word advocate? And why am I now having to hyphenate the word mom and or dad with advocate? And I don't want to be dad.

SPEAKER_01 3:18

I don't want my child to be sick, right? Yes.

SPEAKER_02 3:21

Exactly. But here we are. We are more informed, we're a bit more polished, maybe, we're definitely super real. And the coolest thing is, man, we have met and connected and shared so many amazing people in the world doing fantastic things. And it doesn't have to be like, let's face it, there's a lot of really, really special things going on that are not in the news. And we have gotten to like see these people push forward and deliver hope firsthand. And when you're surrounded by that kind of energy, oh my gosh. I mean, it's like having constant hope on tap.

SPEAKER_01 4:09

Yes, and I hope that we have extended that for all of our listeners. Yeah, we have. Oh, I agree. And so can you all still hear me? My headphones got played with by the cat. Uh again, just being really real here. The kitten who is now a teenager, and he's destroyed four of my podcast headphones. Anyway, okay, so um my point is I can't turn my head a certain degree, or else you won't be able to hear me.

SPEAKER_02 4:38

That is so in alignment with being a mom that you have to position yourself a certain way and not like disrupt it whatsoever because the pitfall of slight adjustment will be the beginning of the end.

SPEAKER_01 4:56

Yes, exactly. So I'm very um humbled, I think is the word to share. Yes. This episode today is all about a personal update and an announcement. Um, yes. And I think it's a perfect place to start before we drop the announcement, Ashlyn, to share kind of where we've been, which you just naturally did. And um, it is so amazing how our social channels have just expanded in reaching people, which has been so fun to watch. And I remember back to when you and I looked at each other and we were like, I don't want to do the social. Do you? No, I don't want to do the social. Well, who's gonna do the social? Somebody's gotta do social.

SPEAKER_02 5:36

Well, and the reason neither of us wanted to do it was because we were like, we were still questioning how do you be a parent? How do you be a medical parent? Wait, how do you do social media? Exactly. That felt kind of far down the list.

SPEAKER_01 5:50

It felt really hard to accomplish all of the above. Um, but hey, look at us now with people, an amazing shout out here to Miss Kelsey, who runs our social media.

SPEAKER_02 6:01

Yes, Kelsey Abraham.

SPEAKER_01 6:03

She is a godsend, quite literally.

SPEAKER_02 6:06

We love her, and our board that has expanded and covered so much ground in the skill set and the life experience that they bring, and all coming with their own extreme wealth of passion and um just genuine good people pouring their energy into Parent Empowerment Network.

SPEAKER_01 6:33

Yes, yes, amazing people. Our nonprofit, while the podcast uh idea started five years ago, the nonprofit started April of 2022. So what's that four years ago now? Almost. Amazing. So the nonprofit and shout out to Gabby Benson. Anybody needing someone to help you with a nonprofit, man, she's your girl with Sprouts fundraising. She's so amazing. Um, so anyway, there's just been so much good, so much good that has happened with Parent Empowerment Network. And it has Emily, yes, Emily, really quick. Oh my gosh.

SPEAKER_02 7:08

The fact that we have the world's most loyal, consistent supporters in terms of people who believe in us, believe in our mission, who have shown up and invested their money, their prayers, their energy, their their time to make this grow has been. However, it's definitely not expected, right? Like it was not anything that we have ever taken for granted, and nor will we ever. So just a thank you to everybody who has, whether it is a dollar or it is a lot more dollars, it is prayers, it is good wishes, it is volunteering, donating an item to you know, go towards a fundraiser, whatever it is. We are so thankful. It's unbelievable. Overwhelmed with gratitude, absolutely overwhelmed.

The Announcement: Emily Pauses To Care

SPEAKER_01 8:14

Yes, this community has shown up big time and will continue. It's kind of sounding like we're ending. We're not ending. That's not the announcement. Yes. Spoiler, we're good. Okay, I'm gonna drop the announcement. We've teased them long enough. It's like eight minutes now. Um, okay, so here's the announcement. I have been coming to a place in life where no shocker, I'm pretty well maxed out. And uh that's what I kept coming to every time I was talking to my husband. Like, I am just maxed out. I am stretched so thin. And so it is with a heavy heart, but also with great peace, that I have finally, over time, come to the conclusion and the discernment that it is time for Emily. Um Emily's the one speaking right now, to step away from Parent Empowerment Network and Empowered by Hope podcast for a while. How long is a while? Great question. Have no idea. I don't know. I don't know how long I need to step away, but I do know that I need to step away and um, you know, clear the way for Miss Ashlyn and for our board to run the show and rock it and do amazing things. But for now, my time is needed with my family. And um and that that is more than enough for now. So, and we think it is so fitting to make this announcement during January when we are doing self-care. That is the theme for all of our outgoing communications, our podcasts, our social, our emails is all about self-care or what we're calling self-preservation, because sometimes when you're in the heat of medical trauma and management for your child, self-care feels way too heavy and too big. So we're returning it self-preservation. And so we thought it was very fitting to announce that out of self-preservation and dare I say, self-care for myself, it is time for Emily Whiting to hit the pause button and to retreat to the four walls of my own home. Care for my own children, uh, which there are four of them. It's crazy. And uh the oldest is the one who uh was part of the inspiration for this whole amazing mission, and her needs continue to uh be heavy. It's a lot. She still has a lot of needs. Um she's had, I don't know, 25-ish surgeries at this point, and we have many more to go, and at least two big ones this year. My point is um I actually brought on our fourth child in a week from today. She'll be a year. Can you believe that, Ashley?

SPEAKER_02 10:44

Oh my gosh. No, I didn't realize we are one week from the cutest baby with the cutest cheeks.

Self-Care Reframed As Self-Preservation

SPEAKER_01 10:54

Oh my gosh. We do make very cheeky babies, and I don't mean cheeky as in like the English version of cheeky. I mean cheeky as in like big cheek ones. I make those.

SPEAKER_02 11:03

I would say I make the I I make the English cheeky ones for sure. They've got plenty of cheekiness.

SPEAKER_01 11:10

Oh, so cherub faces. I got the big old chubby faces. Um, yeah, so it has been, and I say this with such genuineness, the greatest pleasure getting to serve the families that we are here to serve. And that will continue. It is who I am. I when we're talking to the board about, you know, like passing over different responsibilities that I have carried. Um, it's been fun talking about serving the families because it's like, well, I mean, I won't be generating the content anymore, but I'll still obviously be constantly. I mean, I'm in and out of hospitals constantly. And so there's all these natural opportunities to support families. And Parent Empowerment Network just formalized that and made it more of a strategic approach, right? But I still will have the uh amazing opportunity to serve families in and out of all the normal things that we do. Uh, but I just I want to say thank you to everyone who has allowed us to be part of the journey with you. We say, I think it's in our intro for the podcast, or maybe it's in our outro. We're sorry that you need us, or you we're sorry you find yourself in a position that you've searched and found us. Exactly. But we're so grateful you found us because now you have a community and you're not alone in this, right? And so thank you for letting us walk that journey with you, even if it was for one episode or if it was for all 80 plus. Um, and so I'm very excited to say that um parent empowerment will go on and Empowered by Hope will go on and do amazing things as I step away. And like I said, I may be back. I hope to be back. I don't know when. Um, and you'll hear me throughout, like I'll still join for podcasts here and there. Um, it just won't be as regular. So Ashlyn, you want to share?

Family Realities And Medical Load

SPEAKER_02 12:57

Absolutely. So, first off, I started our introduction to this episode intentionally pointing out what we've done because it is so easy in today's world, maybe it's always been this way in the experience of mankind, or at least you know, being a woman, that it's so easy to look at the things you've done and just see them no more than, well, those are things that I wanted to do or needed to do, so I did them. And and that's really it. But getting to work with you, Emily, on this level, beyond our incredible friendship, that has influenced me in ways that there are not currently words, at least in the English language, to capture. The amount of just pure goodness and uh love that I have seen you re like directly responsible for sharing with so many people, it's just a gift to witness it. And the thing that I feel like I get to learn as I get older and have more experience and you know more perspective shifts is that I'm learning that those touch points that you have are so much more than that initial contact. And for every person that you have touched, Emily, with your heart, with your faith, with your honesty, your real talk, but always your real love, those people I believe carry that light with them. And then there's just no way of measuring who all gets to receive more of that light. And I just one of my favorite numbers to look at because that's just part of having anything that is anywhere within the realm of a business entity, which a nonprofit is, a podcast is. I love looking at our number of countries that we have directly had conversations with families from.

SPEAKER_01 15:28

Yeah.

Legacy, Lighthouses, And Global Reach

SPEAKER_02 15:29

And that number is 18 countries around the world. And so I think of it as when we really started this, we we really found ourselves gravitating to this desire to exist as a lighthouse, right? Yeah, we said we cannot take away anybody's heart. I mean, if we could, we would have started with our own, let's be honest. Right. We we could not, and we cannot. That's not our job. But as lighthouses, we could be that proof others are not alone in their journeys, that the storms that they're facing, they are capable of because others have done so, and that we are looking out for them and we are also waiting for them to get there, and we believe in them. It's it's all of those things. And I look at you and I'm like, you have planted so many lighthouses around the world that even with you, you say stepping down, I refuse to accept that term. I'm saying that you're stepping towards your family because that's what is it, it's choosing where you're going to focus your energy right now, right? It makes more sense for you to step towards your family instead of trying to straddle the line in the middle. And I hope that everybody listening to this understands one, how awesome that truly is, and how hard that is, but at the same time, what a gift it is to have choices in life, to be able to make decisions for your life, even the ones that are tough, but you know are are right for you or your family. That's the gift that not everybody has. And the beauty is that this is for a time that's undefined, but she's not allowed to go anywhere forever, folks. She knows that. We know that. This is a season. It's a season, exactly. And it's there is this quote that I made sure to write down, but I wanted to share it, and it is uh one that has really been my neon sign, I feel like, that God and the universe wanted me to have going into this my own new season of life, which does include still leading parent empowerment network. But right, is uh Dr. Maya Angelou, who I absolutely love, had written her definition of success is liking yourself, liking what you do, and liking how you do it. What I realized when I read that, she doesn't say anything about liking your job or your career, shouldn't say anything about liking your circumstances, right? Or liking your accomplishments, nothing like that. It's how you feel about yourself, what you're doing in your life in that moment, and how you're doing it. And Emily, I continue to learn from you all of the time. I mean, I have learned so much from you. I could not be the mom I am had I not had your influence. I know that that was divine orchestration, if orchestration's a word, divinely orchestrated sounds a lot more poetic. I look at what you're doing right now as following this truth here. You have been bending it more than Beckham, trying to bust your back to be mom of the year, super wife, still, you know, doing so much for Parent Empowerment Network. You've been trying to be everything for everybody. And the reality is life doesn't work like that, does it? And that's so hard to swallow, is that sometimes you have to realize I still really love something, but where I am in life, I can't do it in a way that I actually feel good or that I enjoy how I'm doing it, which then is affecting how I'm feeling about myself. And I have so much respect that I was able to watch you go through that process in the most beautiful, honest way. And all I could think is not only how lucky am I to get to watch you and learn from you, but my gosh, her kids have like the world's greatest mind. Mom, like what an example of actually walking the talk and choosing alignment with who you're meant to be and honoring your season you're in rather than forcing yourself to fit everything in you possibly can for the sake of it, right?

SPEAKER_00 20:20

Yeah.

SPEAKER_02 20:22

My hope for you, my dream for you is that this chapter is full of more opportunities of just being home within yourself, catching your breath, and just understanding how incredible a person you are simply for existing, and that you are love. You have nothing to prove or to achieve or accomplish to be worth anything additional because the reality is, is you are pure gold, Emily, and you have blessed so many already, arguably myself the most.

SPEAKER_01 21:04

Well, shucks, Ashlyn. I'm all blushing and tearing up over here.

SPEAKER_02 21:09

Can we please give an update to everybody about the status of the hard a car group?

SPEAKER_01 21:14

It was not intentional. That's the fun part. Of course.

SPEAKER_02 21:18

I mean, it was a goal that we just didn't define, or at least I remember saying, that's what we're gonna do. Not even say hard a car. We didn't even know the word hard a car. I just said I knew that we were gonna do this, that God was telling me that what we initially called Charlotte's Hope Foundation. I remember looking at you on our walk in that backyard of that Airbnb and saying, I don't know how or when or where, but I know that through this work we're going to find other Charlots, and you guys are not gonna be alone.

SPEAKER_01 21:52

I don't just remember that moment too. Okay, guys, this is just awesome. So this all started. I was in the middle of nursing my third baby, and I was finishing writing my book, and you called and you were like, Emily, we're starting a podcast. I'm asking you because I'm supposed to ask you, but I'm actually telling you because we're doing it. And it all started because you saw some t-shirt in the back of a closet and it gave you an idea.

SPEAKER_02 22:20

Well, God just talked to me. We'll just leave it at that.

From Undiagnosed To Hardacar Network

SPEAKER_01 22:22

That was the real that was the real reason. Exactly. So then next thing, you know, fast forward, we get together at an Airbnb and we pow about this whole thing, and then you tell me, you know, through all of this, we are going to find more Charlotte's because at the time Charlotte had no diagnosis, she had a million diagnoses, but no diagnosis. She was how old? I don't know. Four and um three or four at that point. And uh you kept hearing the only one. Yeah, you're the only one. We've never seen this before, and we had done all the latest and greatest genetics tests and hadn't gotten any diagnosis. And then when she was five, so we were let's see, she's eight now. So this was three years ago. So we were well into doing the podcast and the nonprofit. We got a diagnosis, it's called Hard Acar. And at the time, I think there were 13, maybe 16 other families around the world, maybe nine. I don't know. Episode 21 will tell you all about it if you want to know. Um, and so we, you know, started slowly kind of like getting to know who around the world had this same disease. And then over time, fast forward to now January 2026, there are over 20 families. They are all connected together via um a common group that we've created. And um, we have had our first family conference, and there are geneticists around the world studying, which reminds me, I need to call the geneticists later today uh about Charlotte's involvement in the next study. Anyway, um, and now there is another nonprofit starting that um is going to focus on funding the research for hard a car that does not involve parent empowerment network, but um that's amazing. Yeah, so there's a lot of studies right now to proactively work on figuring out how to treat the the vascular system because um unfortunately, two patients, two lovely little girls have passed away when they were around 20 with aneurysms. And so that all happened because Parent Empowerment Network um started to just kind of like naturally collect these families and we pointed them towards one one social group, and uh that that's how that all evolved. That's crazy.

SPEAKER_02 24:45

Absolutely wild. Well, I think this wraps this all up perfectly. It brings it full circle with when we started, it was really, really uh it was beyond important. It was a non-negotiable that we be non-diagnosis specific, yeah, non-prognosis specific, and also explicitly clear that undiagnosed was included. Because we know that isolation is the ultimate shadow monster in and on this path. It's always there waiting for any opportunity, including paying attention to nomenclature that could cause anybody to question their belonging.

SPEAKER_01 25:30

So unintentionally coming up with the right words, yes.

SPEAKER_02 25:35

Exactly.

SPEAKER_01 25:36

So many of the like wall scratch post-its, you know what I'm saying?

Collaboration With Medicine And Research

SPEAKER_02 25:41

Oh my goodness. Oh, yes, absolutely. I know. We never did reach out to post-it notes about a sponsorship or being partners. We'll have to remember that for future. Anyway, but what I want to drive home here at the end is that we knew at the time Charlotte was the only child known within, you know, one of the biggest medical systems in the world that was set, you know, that was supporting her and saying we don't know of anybody else, which was very overwhelming. We knew that my daughter Emery was an all a very, very rare anomaly, and even more rare by being female with her anomaly. And we had already heard multiple times just in our own experience, how you know, when there's such a small population, or like Charlotte, there's a singular population, populi, there's not investment, there's not awareness, there's not, you know, sharing of resources because there's not enough of a population to generate that type of involvement, typically, which was a really hard reality to learn. And so we made the commitment, and I'm really proud that we have never done anything to sway away from that, which is that we treat every family and every child like their child is the most important child in the world, because that is the truth to every family. It does not matter the number of children, the number of people with a diagnosis or a condition or you know, medical circumstance. It's like that Brad Paisley song to the world, you might be one in a million, but to me, you're or whatever this man, I just messed those up. I know exactly what you're talking about. But you know what I'm talking about. Yep. And when we got the official do you like how I descriped it as we got the diagnosis for Charlotte? Because Emily's children are all mine as well now, and mine are hers. And you know, it's just like an informal adoption. And and uh I remember when we got the name, it was that it was literally that week that I added hashtag harticar. And I'm not this this was you know something that we talked about, but I was like, we're let's add the hardicar hashtag because now that we know that the tests can find this, at some point, we don't know when. At that point, we honestly probably thought it would be a lot longer before we would hear of anybody else who'd get it, but we're like, at least there will be some signal out there beeping on the web, you know, that you're not alone.

SPEAKER_01 28:32

They're here to bring in like once a month. There would be, and I know that's small, but for us that was a family a month. Absolutely amazing. And unreal. And then because of that, we were able to find the doctor around the world who has seen the most patients, which at the time she had seen like two, I think. Which made her the specialist. Now she's seen all 20, so that's great. Well, maybe not like seen in clinic, but she knows them all.

SPEAKER_02 28:58

Um which is huge. I mean, we amassed her study population. They actually she actually had enough to create a new research uh paper, right, that provided a protocol that could not have existed for other doctors when a when a baby was going to be born with it, right?

Faith, Seasons, And Letting Go

SPEAKER_01 29:18

And that's yes, and that's the other amazing thing about the approach that I'm so proud of with Parent Empowerment Network that will continue. And I just want to make sure you all hear this. It's just me stepping away for a while. The Parent Empowerment Network continues, Empowered by Hope continues. But um, but the amazing thing is we've always set out to collaborate with the medical community, and the power of that has been phenomenal. And we could go on and on. There's other episodes that go in great detail about this, but like bringing a surgery to the states that wasn't here before because we knew it wasn't accessible for most families to be able to leave the states to go get that surgery, you know, um, and to collaborate with a researcher to help her get a sample population. Uh, just amazing things have happened that are just absolutely astounding. The collaboration between France, England, Chile, Cleveland, Ohio, Indiana. Amazing. We've got families from Canada who have been pitching in in astounding ways. It's been, it's been quite a journey. And I'm so, you know, I can say with so much confidence God called you and I both to this work. He called called us through this work, he calls you to continue this work, he calls me to lay it down for a while. And that's a beautiful thing. That's what he just kept saying to me over and over. And I will admit I wrestled it for a long time. She did.

SPEAKER_02 30:43

She really did.

SPEAKER_01 30:44

I wrestled with God. You know the story of Jacob wrestling with God, that that's a real thing. And I wrestle with him a lot. And uh I did not want to let go. And he just gently loosened my grip one finger at a time until finally I said, Okay, I will do it. I will let it down. I will lay it down. So, anyway, I am just so humbled for the opportunity to have served all who are listening in whatever small way that I have. And what an honor it has been to work with you, Ashlyn. I can't wait to work with you again in the future. Can't wait to um get more involved again. But for now, I shall say, I'll see you later.

Closing Strength And Calls To Connect

SPEAKER_00 31:29

You are capable, you are equipped, and you are not alone. Together, we can do hard things for our children.

SPEAKER_02 31:36

Is this episode connected with you and you want to hear more? Be sure to hit the subscribe button.

SPEAKER_00 31:42

We would also love to learn about your personal journey and how we can support you. Reach out to us at contact at charlotte's hope foundation.org. And last but not least, if you know of someone who could benefit from this podcast, please check it out.