Resilience, Hope, and Rainbows: Mito Awareness Part 2, with Susan Geoghegan

Transcript

Jessica Fein: Welcome. I’m Jessica Fein, and this is the I Don’t Know How You Do It podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable.

I'm so glad you're joining me on this journey, and I hope you enjoy the conversation. Welcome back to the show. This is part two in my focus on mitochondrial disease for Mitochondrial Disease Awareness Week. I'm so happy to introduce you to my friend and today's guest, Susan Geoghegan. Susan is a writer, speaker, and creator who uses grief, hope, and sarcasm to create light for those who find themselves on a dark, isolating journey they never expected to be living.

In 2016, Susan and her [00:01:00] husband, Michael, welcomed their first child, Lorelai, into the world. Lorelai was born with a slew of medical complexities and spent 77 days in the NICU. Halfway through that NICU stay, Susan and Michael learned that they were not just new preemie parents, but they were rare disease parents, and that Lorelei had a rare form of FBXL4 mitochondrial disease.

She was the 31st documented case of this type of mito in the world. In 2019, the family welcomed Benji, who also has mitochondrial disease. Lorelai passed away in 2021. Susan says she traded her princess tiara and pink superhero cape for angel wings. Susan has done so much for other rare mamas, for the medical community, for her own family, for me.

I'm really excited to introduce you to her today.

Welcome, Susan. I am so, so glad to have you on the show today. A, because I adore you and B, because this week is [00:02:00] Mitochondrial Disease Awareness Week and I just feel like your story and everything you've been living through is talk about a story that really sums up what it is those of us who live mitochondrial disease are dealing with.

Obviously, it has played such a horrific role in both of our families, and I'm really glad to have you here and appreciate you sharing your story with us.

Susan Geoghegan: Horrific, yet incredibly beautiful. 

Jessica Fein: Oh, we are getting right into it. Okay. I was going to get to that.

Susan Geoghegan: Cuz my, my heart kind of sunk as you said, horrific, because I mean, I would never have picked this.

And when I was mentally trying to prepare for your show, because I didn't feel like I was really qualified for this nonsense, but. As I was trying to prepare, I was like, I remember laying in the hospital bed when they said, something's wrong with your daughter. I had not had her yet. They said she probably had something called Dandy-Walker syndrome, which would have been far better in the long [00:03:00] run than Mito.

But I remember laying there going, I can't do this. I don't know how I'm going to do this. I don't want to do this. I don't want to be a mom to a disabled person. I can't do this. Like, I literally just kind of sat in that place for quite a while of my journey, actually. And so when I was preparing to be here today, I was like, what am I going to talk about?

I'll probably talk about how I am still questioning how I'm really doing this. 

Jessica Fein: First of all, I think it's so great that you went right to it's a beautiful thing. I also was like, there's no way I could do it so much so that when I completed adoption papers, you know, when you adopt, there's all these questions about like, would you be prepared to accept this?

And would you be prepared to accept that? And I was like, Nope, Nope, Nope. I was like, why would I sign up for that?

Susan Geoghegan: Ooh. And you actually like had to put it in writing too, which is just a layer in itself.

Jessica Fein: Yeah. Yeah. And had to admit to my husband that I didn't want to sign up for any of those things. And now we're just going into a totally different topic.

[00:04:00] He was like, fine. He was happy to check all the boxes that, you know, yes, we will be happy to be a parent in any situation. And I was like, well, I'm not as good a person as you are. And then here's how we turned out. So before we get into why it's been beautiful too, can you just share a bit about your family so we're all on the same page here. 

Susan Geoghegan: Yeah, so I have two amazing kids. You know, I did all the planning. I went to school. I went to college. I checked all the boxes and I was like, this is what I do. And I meet a dreamy guy and I get married and I have a career and, and then we have 2. 5 kids and the white picket fence and the whole, you know, like that's what the plan was.

Literally before my kids, I was a planner, like I was paid to professionally be a wedding and event planner. I had my own company and I was in sales and marketing for like the real money to pay the bills. And then I had my own wedding planning business on the side and I loved it. I was so good at [00:05:00] planning.

People were paying me to plan for them. Then Lorelai happened. Lorelai was born three months early and she came in like a wrecking ball. perfect pregnancy, perfect everything. And then Lorelei was like, Oh, hey, I'm here. Let's flip your life upside down. And halfway through her 77 days in the NICU, we got a mitochondrial disease diagnosis, which for those in the mito community, most people are shocked to hear that because getting a diagnosis a month and a half into her life is really not common. At least it wasn't seven and a half years ago. I know it's becoming more and more common these days as science continues to evolve, but we knew a month and a half into her life that she had FBXL4 mitochondrial disease. So in one conversation in that really awkward, quiet conference room in the NICU, you're sitting across from, you know, the lead people and they're going on and on about, here's your child's diagnosis.

And here's what your future is going to look like. I was told that she [00:06:00] would probably never walk, talk, or eat by mouth. I was told that she was the 31st documented case in the world. I mean, like, they didn't say world. They said she's the 31st documented case. And I was like, oh, at this hospital. Oh, God. And I was like, oh, in Virginia.

Oh. And they're like, no, honey. And then I was also told that it was a 25 percent chance that if we had any future children, they could also be affected by this disease because the type of mito that my children have is because my husband and I both have a rare recessive gene. We both contributed our rare recessive gene for Lorelei.

And because of that, her mitochondria, which I'm sure you've talked about on your show, given your situation, but the mitochondria are the powerhouses of the cells. And that's what make our energy to grow, thrive, live, do all of our normal bodily functions. And my kids and your daughters just didn't work properly.

So fast forward a little bit. That was 2016, [00:07:00] and in 2019, we welcomed Benji to our family, and he was that puzzle piece that was missing. Like, I will tell you, I cried more when I found out I was having a boy than I did when I found out that he, too, has Mito. I was like, I'm not gonna be a good boy mom! Then we found out, I don't know, A month later that the amnio showed, he too had Mito and my first response was, well, he's not going to want lizards and snakes and stuff.

Jessica Fein: I know how to be a Mito mom. 

Susan Geoghegan: I can do the Mito. I don't know if I can do the boy mom thing, but I would not change Benji for the world. He is my little bear cub and he is just the sweetest little thing. So we have Lorelei and Benji. And when the rest of the world was upside down in 2020, we were living our best lives.

I had both of my kids in my arms. Lorelei was probably at her peak of stability, and Benji was a baby. He didn't have the personality that he has now, but he was here, they were both together, [00:08:00] and things were good. I mean, I think good and hard and all of that is perspective, and for us, things were really good then.

I had two medically complex kids, neither could walk, talk, sit up, crawl, eat by mouth, but we were all stable, and we were all here. The end of 2020, we found out Lorelei's shunt had failed. She needed double brain surgery. That was a tough pill to swallow because, you know, COVID and immunocompromised kids, like nobody wants to be in for double brain surgery.

Jessica Fein: Nobody wants to be in for double brain surgery, even when it's not COVID, just to be clear. 

Susan Geoghegan: Good point. Good point. So the end of 2020, she had her brain surgery. She did bounce back, but After that, I think it was just a lot for her body. And I would say early 2021, we were in and out of the ICU every other month for a week and a half-ish at a time.

And in June on Benji's birthday, I took my kids to a lavender farm [00:09:00] because I was like, it's outdoors. It's safe. You know, It was the first time that we'd been in public anywhere and I caught a cold and everybody in my family ended up catching that cold even though I stayed separate. It was Benji's first virus and it was Lorelei's last virus and it was her quickest hospital stay and I will say, like, you've got to find the beauty in all of this because all of her hospital stays were always on a holiday and we went in on 4th of July and she passed on the 7th.

It was our quickest hospital stay, but I laughed as we rolled in. I was like, well, here we go. Just another hospital stay on a holiday. And yeah, Lorelei did things her way. And it's been two years and some change since she passed. Benji is stable, but his disease is progressing. I think because we have done this before, we're a bit more proactive with the meds than we were before.

With her, we didn't know with 31 documented cases. Like I was determined that my kid was going to prove science wrong. [00:10:00] Like she was going to be the one that we were going to name the disease after. She was going to be the one that was going to be like the breakthrough case. And now it's not that I don't have the same level of hope for Benji.

Maybe I'm more realistic. It's not lack of hope and it's not really lack of realism either, but I think with him, I'm trying to be more present than I was with her. Because I miss my kid. You know, like with her, we were in doctor's appointments and we were back and forth to CHOP and we were doing all the things and we're not doing all of that with him.

Jessica Fein: CHOP for people who don't know is one of the hospitals that's very well known for Mito. That's what we're referring to. Yep. It's so interesting to talk about hope as it pertains to the Sense of control and the sense of she's going to be the one who's going to prove them wrong because I feel like part of that is I as the mother am gonna be the one who solves this right?

I'm gonna come up with it I'm gonna figure out I'm gonna work hard enough that my kids gonna [00:11:00] make it which is ludicrous. We know that right? 

Susan Geoghegan: Well, and in my family, my husband was the one that took that mentality. He did all the research He went to all the conferences And for me, with my event planning background, I remember saying to him, like, you cope with research and I cope with drinking wine.

Like, you know, how can I make a difference other than like being the mom? And he said, well, why don't you plan a fundraiser? You're good at planning things and we can raise money for the FBXL4 lab at the Children's Hospital of Philadelphia. They're studying the exact type of mito that my kids have. And so I created float for a cure and everybody took their inner tubes and we all floated and I think we did four years of that and we'll get to this eventually, but that eventually led to a nonprofit and things like that.

But for me, I am good at planning events. So I used that. I can't be in the lab doing the science. That is not the way my brain works. So my family and my village before the nonprofit started, we [00:12:00] raised 135, 000 for the Children's Hospital of Philadelphia just in like four years time of doing all of the things through events and things like that's all I could do as a mom to help save my daughter's life.

Jessica Fein: You said right at the beginning when I, when I used the word horrific, because of course we lost our girls. 

Susan Geoghegan: And I'm going to lose my son. 

Jessica Fein: Like, I mean... So, unequivocally, that's horrific. Okay. So, you can use that word. But I love that you also went right away to the beauty of it. So, I think that seems really, really impossible for people who haven't been in it to grasp.

How can we say that? How can we feel that there's beauty there? Which I know you and I agree on so deeply. Can you talk about that? 

Susan Geoghegan: I don't even know. I mean, I'm sitting here and you're saying that I'm like, yeah, how is this? Not only horrific, but these kids are the purest souls. I think I have ever met in my life and little things throughout my journey [00:13:00] of I could never be a mom to a nonverbal child.

I could never do that. You know, I have gotten in arguments with my nonverbal children. 

Jessica Fein: I always said nobody could scream louder than Dalia and that was when she wasn't able to talk. Or make noise. She could mouth, that's how she would communicate, and I said she could mouth more loudly. Than the loudest scream.

Susan Geoghegan: Oh, and Lorelei's side eye would speak volumes. Like, when you got the side eye, you were in it. And Benji is just, he's super dry. He is not my sense of humor. He is my husband all the way. They're very, like, engineering minds. And, like, I am very creative and colorful and, like, all the things. And they're like, this is how this works.

And he's nonverbal. How can I tell you that my nonverbal son is very engineering brain? They can communicate. And I remember saying, like, at the time I was a food blogger and I remember saying, I make good food. Like my kids are never going to eat by mouth. I can't be a mom who doesn't do that. There were [00:14:00] so many.

I can't. And then. As my journey progressed, like, I can't be the mom who loses her daughter. I can't be the mom who goes from two kids to one kid. I can't be the mom, what if Benji dies before his sister? Like, when I was pregnant. You know, there's so many, I can't do that. But as you keep going, everything is so magical and beautiful if you choose to see it.

And I think that for me, I had to actively make a decision early on that we were going to make as much good come from this as possible. I'm not perfect. I have days where I wake up and I'm like, Um, I'm out like, I don't want to feed my kid with a tube. I don't want to draw meds. I don't want to give meds in the middle of the night.

Like, I don't want to do this. But I think if you choose to see the good and you put the good out, it sounds so woo woo. But I think if you put it out, it'll come back. And I created a bucket list for my kids and we do all the things because that's how we find the beauty in this. [00:15:00] People are so kind. Maybe it's because they pity me.

I don't know. But like, I have had so many unique friendships come from this. I mean, you included, like, you know, I think because I'm honest about our journey and I'm honest about my kids and I choose to look for the good. It makes it a little bit more beautiful, and the beauty comes back to me. 

Jessica Fein: What kinds of things did you put on their bucket list?

Susan Geoghegan: Mmm. Well, Lorelei was the flower girl in my sister's wedding, and my husband got to walk her down the aisle. Lorelei got to meet the JMU Duke dog because I went to JMU. Laurel, I did Disney. That was an epic trip in itself. The first time she almost died from the flu. We spent three weeks at Arnold Palmer and, and then we redid Disney and everybody's like, I don't know how you're redoing this.

Like your daughter almost died and you're going to go 12 hours back to Florida and do it again. I was like, yeah, we are. Apparently you only live once. So let's do this. Benji's bucket list is a bit more mellow because he is a much more mellow child. [00:16:00] He likes ranch dressing and Hidden Valley Ranch. I think Benji is like an unofficial nonverbal spokesperson for Hidden Valley Ranch.

Jessica Fein: Shout out, kudos, bowing down to Hidden Valley Ranch. Tell people what happened there.

Susan Geoghegan: So Benji's Make A Wish trip was unique in getting it set up. He wanted to taste ranch dressing with Santa. We decided to do the Polar Express ride in Tennessee or North Carolina, somewhere out in the mountains there. And Make A Wish did all of the logistics, but no one really remembered the ranch portion.

And so I had a friend who reached out to Hidden Valley. They heard Benji's story and saw his little video of me saying, Benji, do you want to taste ranch dressing with Santa? And since he's nonverbal, his way of communicating is a huge smile. So they saw that video. Next thing you know, Benji has his own ranch bottles.

Every season, they still send him a Benji ranch merch up the wazoo. We have t shirts, we have hoodies. I have a quilt that has ranch dressing bottles all over it. They [00:17:00] sent us meals. They did everything, and they were just amazing. I'm now, like, only by Hidden Valley, like. Everybody buy Hidden Valley.

Jessica Fein: That's funny.

I will also say I only buy things with Paul Newman's face on them. And my kids knew that from a young age because of course Paul Newman, all the proceeds from his salad dressings, et cetera, go to the camps that are for kids with different medically complex things. And we now, through MitoAction, do have mitochondrial disease weeks at these camps.

Something about these salad dressing companies, but, you know, I wonder if when we say there's so much beauty, part of it is finding how good people can be. 

Susan Geoghegan: Yeah, yeah, absolutely. And I mean, this is a very dark journey. Like, you know, when they hand you that diagnosis and you, in one conversation, become a mito mom.

Jessica Fein: And you don't even know what that is. 

Susan Geoghegan: Oh, no. You don't know what that is. You're like What? I look I look back at that version of me. I'm [00:18:00] like, Oh, she was so sweet. She was Yeah. Oh, how cute. Yeah. But at the same time, I have to validate that version of me because that was hard. The chapter I'm in right now is also incredibly hard, but for different reasons.

And I look back, though, and I'm like Oh, yeah, you quickly became a Mito mom. What does that mean? And where do you go? And they tell you all of this dark, heavy crap, and they flip your future upside down. And then in that conversation, no one says, but you will find joy, you will find people, your kid will still bring you so much light and love.

No one says that. They give you the science, they give you the facts. And so if somebody is listening to this, who is new to the Mito world, I know that you. early chapter of diagnosis is hard and heavy, but the beauty will come. It absolutely will. 

Jessica Fein: And that's probably true. We don't know firsthand, but for other diagnoses beyond mito and for so many things [00:19:00] that we're like, I can't, I can't.

And then we don't have the choice and then look what happens. It's so interesting because I think not only Is it true that the joy will come, but it all sounds so Pollyanna, right? It all sounds it does, but I do think it's true that we appreciated beauty and joy and recognized it and created it in a way that was so different than we might have had we not been in this situation.

Susan Geoghegan: I firmly believe that I had to and continue to cling to hope, but create joy. And I can have buckets and dumpsters full of hope. But unless I'm going to create that bucket list and create these memories. I know of people who have spent years in the hospital, you know, but having the moments in the hospital where you have a pajama party in the PICU with your daughter, like, obviously Lorelei's not here to remember that, but I do, and I would give [00:20:00] anything right now for a pajama party in the PICU with my daughter.

Jessica Fein: Just to say that Pediatric Intensive Care Unit, sorry, for people who might not know, one of my favorite memories was we made a movie theater in the PICU. In Dalia’s room, you know, and she was obsessed with the movie Rio. Okay. Okay, so we watched Rio three times a day for three months when we were there, and then Rio 2 was coming out.

Oh no. And we, of course, we were in the picky, we didn't even know if we were getting out of the hospital. The producers of Rio 2 before this thing was released, sent a person with a copy. I mean, it was all under lock and key to be able to have a viewing in the PICU for Dahlia of Rio 2. And I mean, of course, we decorated the whole place and of course, there can be joy in the PICU.

That is for sure. Mm hmm. 

Susan Geoghegan: There can also be a lot of heartache in the PICU. I lost Lorelei in the PICU and that was not the plan. As I said earlier, I am a planner. They [00:21:00] told me her diagnosis. They told me her prognosis and I started planning my daughter's funeral because I'm an event planner. If we're going to do this, like, this girl is going to have an epic funeral.

I mean, she did. But I also planned, you know, here's how my daughter's going to pass. Like, she's going to be at home with her golden doodle and her family and her brother. And like, we're all going to be there in the king size bed and it's going to be beautiful. And oh no, Lorelei decided to go to the pick you on a holiday, which is her thing.

And it was also Hurricane Elsa. frozen with her jam. So Hurricane Elsa was literally rolling into Virginia. And of course, my kid left during Hurricane Elsa.

Jessica Fein: Yeah. Do you think that part of the reason that you're more present, as you said, now is you realize that You can plan all you want, even when your plans were completely derailed.

You were still trying to plan in this new reality. At the end, you learn you can’t plan.

Susan Geoghegan: Lorelei taught me my plans don't matter. And [00:22:00] it took my daughter's entire life for me to actually learn that. It took her ruining how many vacations, that girl, holidays and vacations. Always. Disney. Camping. She ruined so many vacations.

And I finally, finally got to the point where I was like, You know what? If we make it on vacation, we make it on vacation. Now I think I'm a better person because I finally let go of so much control. I still, to a fault, am still a planner. But I think I've let myself go, Okay, well, you can plan, plan, plan, and if it doesn't happen, something will happen.

Whatever's gonna happen is what's supposed to happen. It took me a really long time to get to that place because I was the one who had the Disney spreadsheet. My kid had the Disney ICU experience. So like, you know, it took some hard, hard lessons for mama, but eventually mama started listening to Lorelai that we just do what we need to do.

And I think that that kind of also transfers into my grief journey too, that like, I am now at a place where [00:23:00] I'm trying to Manage trauma with Benji, but also heal from trauma with Lorelai, and grieve, and find the joy, and do all the things, I am a ball of emotions right now, and I am going through so many different things that being present I think is all I can do, so I plan as much as I can, and then I just focus on what's in front of me, because I don't want to be let down maybe?

But I also want to be right here with Benji. Does that make sense?

Jessica Fein: Absolutely. And of course, when we're planning, by definition, we're taking ourselves out of the present. Right? Mm hmm. And I know that you and I share the belief that grief and joy can be present at the same time. Mm hmm. And that is really something I learned.

I mean, I never would have imagined that, how in the world could that be possible? It's interesting. My first experience with grief is when my sister died suddenly when she was 30 and I was 27. And she was... My best friend, and there was no piece of that that I would have thought there was any joy. [00:24:00] So, you know, as I think about grief and I think about how grief and joy are so intertwined, and in my experience with Dalia, I really feel that grief and joy were each much stronger because of the presence of the other.

I don't think it's a universal thing for grief, though, because when I think about other losses I've had, there isn't that element. So maybe it's when there's grief in an ongoing basis, right? Maybe when you're living with anticipatory grief. 

Susan Geoghegan: I think, too, we go full circle with that of the horror and the beauty.

You know, like, just like grief and joy, the horrificness of this can sit next to the beautifulness and hold hands side by side and be best friends and not blend together. One of the things we say on my podcast all the time is that things can be together at the same time without blending the two. So these.

Two polar opposite things can sit together, whether that's when you're knee deep in the journey with your child here, who has [00:25:00] medical complications, like it can be beautiful and horrific at the same time, verse now I am facing trauma and also healing at the same time. Unfortunately, I would love for the two of them to blend together so that it would get easier, but, you know, facing all of this and grieving my daughter, yet still feeling her magic and knowing that our girls are sitting like, my background's blurred out so you can't see, Lorelai's probably back there dancing around and Dahlia's like, you know, peeking over your shoulder and all that, but I believe they're still here and I believe them.

I believe that mitochondrial disease wasn't who Lorelei was. It isn't who Benji is. I believe that my kid's soul, who they are, I mean, I feel like Benji would have come out like a dry engineer, whether she was typical or complicated. And Lorelei would have come out like a colorful artist troll, whether she was typical or complicated.

That's who they are. And maybe mitochondrial disease and our true selves can sit side by side without [00:26:00] blending the two. 

Jessica Fein: Well, we have to talk about one of my most favorite words in the world that you introduced me to. And I'm a word person. Yeah. I had never heard this word before. And my husband's an English teacher, and he had never heard this word before.

So first of all, can you tell us about the word apricity? 

Susan Geoghegan: Yes, so the word apricot means the warmth of the sun in the winter. I started a non profit, I had a podcast, and shortly after Laurel I passed I lost my job in marketing and my village was like, hey, you need to Do more with this. You need to roll your podcast into something.

Make it a non profit. I don't want to do it. I'm too tired. But somehow I did. And I too am a word person. I love creating, making things pretty, whether that's through words or painting or events. Like that's what my soul likes to do. And I wanted the perfect word for my non profit. It took more time finding the word for my nonprofit [00:27:00] than it did naming my children.

But caregivers are in a very dark chapter oftentimes. And there's not a lot of light in the winter. It's cold. It's dark. You don't know when summer's coming. So. We went with the Apricity Hope Project because we want to be the light, the warmth, the sunshine for the caregivers who are in their dark, cold seasons.

Throughout my journey in and out of the ICU, and I'm sure you know all of the appointments, all of the nursing, all of the things, I had an incredible, I continue to have an incredible village that stepped up for me, who brought coffee and food and pillows and everything we needed, they would find a way to get to me.

But some of my neighbors in the ICU didn't have that. And I live in a very big military area too, but it wasn't just military families. It was a lot of people in the NICU, people in the PICU, all the people I was meeting. I had this overwhelmingly amazing community and some of them didn't. So along with this.

I was watching all [00:28:00] these amazing organizations that care for the children that do things, whether that's, we have a local hospice nonprofit called Edmark that they have activities for the children. They have nurses that come, they have support systems. Santa comes on a fire truck, like they do all of the things for the kids.

And there's so many organizations like that, but there's nothing for the caregiver. who is holding the child's hand in the middle of the night as they go through autonomic storming, or even who's holding the child's hand as they rip their feeding tube out and it's four o'clock in the morning and the kid's just being sassy.

Like, being a caregiver is hard and exhausting and that's not even taking into consideration the emotional support that's needed. You know, it's an isolating journey. It's an emotional journey. You are grieving so much. You are facing a life that you thought you could never live. You are facing a life that you never expected you would have to live.

You're grieving your future. You're grieving for your children. There's a lot of emotions that happen. And so we created it. We created the [00:29:00] Apricity Hope Project. We care for caregivers of medically complex kiddos that just need that extra light. We do caregiver packages. They are seasonal care packages that go out.

They're basically, like, packages from your best friend. I mean, they're not, like, little sample things. They're good quality stuff. I want you to open this box and be like, Someone loves me. Someone's rooting for me. And they all come with handwritten notes. They're made specifically for the mom that signed up.

We have hospital go bags. We're now partnering with the Children's Hospital of King's Daughters and EDMARC, the hospice organization, and giving hospital go bags for the parents, not the kids. But the parents and it has everything from blankets and socks, you know, the essentials to coloring books to dry shampoo to bandanas for your hair, like all the things chapstick, I don't know about you, but my lips always got so chapped when I was in the hospital with my kid ear pods, because like you forget that your phone chargers, like all of that stuff is in there for the families that are like chronic, frequent flyers in the hospital.

And then we have the [00:30:00] podcast When Autumn Comes and you have been on my show before, but we share stories of medical mamas. Our tagline is it's a place for medical mamas and the people who love them because so many people have gotten so much out of learning about our community. 

Jessica Fein: And I must say to everybody, when you're done listening to this one, go over to that one.

And I put the link because it really is such a beautiful, beautiful show. 

Susan Geoghegan: I've done a lot of things in my life, and I'm really, really proud of that podcast. There's two more programs that the Apricity Hope Project does one. When I was pushed by my community to start this nonprofit, I said, I cannot stop fundraising for Mito because if you ask any caregiver what they really, really want and what they really, really need, they want to cure for their kid.

So we continue to do Camp Hopeful. I had mentioned Float for MitoCure earlier that pivoted with COVID to camping because everybody can stay in their own space and we can all be together outside and money from that goes to. Mitochondrial disease research. I couldn't stop [00:31:00] doing that, but my absolute favorite part of this entire project is we do retreats and meetups for medical moms or moms of disabled kiddos.

We have a hot pink beach house that I will tell you my daughter brought to me. We could go into a whole story about how we got this pink beach house, but there is not enough time. We lost one property and then out of nowhere, this hot pink beach house on the water with mermaids, flamingos. It was like 90% burnished.

It has the best sunset in Virginia. I mean, I'm claiming that.

Jessica Fein: I'm giving that to you. And having seen the pictures, I need to ask, is there like a permanent rainbow in the sky above the house? Because I just, every picture I'm like, she is shining through here. 

Susan Geoghegan: Lorelei was a colorful mermaid. The kid loved water.

Loved water. Benji absolutely hates water. She loved water. She loved mermaids. She loved flamingos. This house is pink, and it's decorated with mermaids and flamingos. And then Lorelei, [00:32:00] like I've said, loved trolls, and they are colorful. And so we had rainbows everywhere, and I would say one month into being there, I was like, you know what would be really cool?

Is if there was a rainbow. Do you know every time I go now, there's a freaking rainbow in the house? We had our first retreat and we did the opening ceremony and we did an opening meditation and everybody's opening their eyes up after feeling all zen and in the moment and I'm like, I'm sorry, the tone of my voice was exactly like, everybody's like super calm, I'm sorry, I need everybody to stand up immediately and they're like, Oh no, what happened?

I need you to get outside immediately. There is a rainbow. We sprint outside and one of the moms said she had never seen a rainbow in her entire life. Oh, and it's shining over our house. That same retreat, it happened to be the weekend of, like, the biggest meteor shower in a really long time. So, there were shooting stars every night.

There were dolphins. This place is magic, and I don't know if I can recreate that for every retreat. Probably not. 

Jessica Fein: You cannot plan [00:33:00] that. No matter how good a planner you are, you cannot plan that. 

Susan Geoghegan: I wish. But we have moms come and stay and we fill their cup, literally and metaphorically. To have people care for you for four days of a retreat, it's just balm to the soul that is so, so tired.

I'm so excited by this project. We're only a year old and I pinch myself every time I walk into that pink beach house and I want to get your opinion because I think you and I should team up and lead a MITO retreat. Maybe next year just for mito moms, wouldn't that be done? 

Jessica Fein: Everybody who's listening.

You've heard it here first — mitochondrial disease awareness week. So it's a perfect time for us to make this decision. We are doing that. I love it. Pencil me in pencil. Okay. Be done. Done. What's just amazing. I mean, I get goosebumps hearing all of these different things you're doing. It's incredible. You're also still in it.

You are in the thick of it. And you're doing so much for everybody and this is the same person who was saying, I can't [00:34:00] do this. I can't be that person. I can't. I can't. The person who in the NICU was finding out what your world was going to be all those years ago. How did you go from, well, I could never do that to being the person who's not only doing it, but who's guiding and helping so many other people do it.

Susan Geoghegan: I decided early in our journey that we were going to make as much good come from this as possible. So I did a TED talk recently, and one of the things that I said in there was, you know, in this classic TV show, Boy Meets World, Mr. Feeny ends with the series finale of saying, do good. And Topanga, the planner and the studious one who, you know, had everything figured out, says, don't you mean do well?

And he says, no, do good. And so early on in this journey, it was like a light bulb moment and it didn't happen immediate. It took time, but my husband and I decided we were going to do good. And we opened our house up to medical students to come and see what it was like to be a family [00:35:00] with complex kids.

We volunteered for boards and committees at the hospital because we probably couldn't change the situation for our kids, but we could do as much good for the people around us. And hopefully those doctors that we opened our home up to will go on and maybe one of them will cure Mito. Maybe one of them will have a Mito patient and go, Oh my gosh, like Lorelei.

I've gotten notes from a lot of them that over the years, like things that has happened. I was a two time NICU mom, so I wanted to give back to the NICU and I helped create the NICU Adopt a Mom Squad. And we go in and mentor NICU moms who are going to be leaving with complex children. Because this is hard.

This is really, really hard. I don't know how I do it. I don't know how I'm doing this. I don't know, I just keep going and I choose to find the good and do the good and love on all the people around me and somehow it comes back to me and things are beautiful. 

Jessica Fein: [00:36:00] You are exactly the kind of person, when I decided to do this show, that I had in mind.

The person who is dealing with what looks so unimaginable from the outside. And doing it with grace and making a difference and getting up every day. And yes, of course there are those days where you're like, no, I can't, I don't want to, but you are doing it. You are getting up and you are creating joy for yourself, for your family and for so many other people.

Susan Geoghegan: I know we're wrapping up, but I do want to add that if there are moms who are listening, they're like, Oh, she is just speaking sunshine and rainbows out of her, but this is hard. It really is hard. And it really is dark. And what you're going through as a bereaved mom, and what I'm going through with one foot bereaved and one foot still in the hospital, you know, it's hard and it's heavy and it's not fair.

I don't want to sound like it's all toxic positivity because it's not. 

Jessica Fein: Thank you for saying that as we started. It's [00:37:00] horrific. And there is no way around that. It is. It can also be a lot of other things. 

Susan Geoghegan: And if you're a new mito mom or with a new diagnosis, one day at a time, you know, sure plan for the future, but focus on the right now.

If I could do anything different with Lorelei, if I could go back and change the five and a half years that I had with her. I would have tried to have been so much more present and just focused on the right now. That's what I get to do with Benji because of Lorelai, but it doesn't make it any easier.

What you're doing is hard and just take it one day at a time and know that there are people rooting for you. There are non profits, not just mine, but there are organizations in the mito world that are there with research and support. And there's people that will have conversations with you because this is a hard and dark and isolating.

It is such an isolating journey. 

Jessica Fein: You know, you find out one of 31 in the world and Dalia’s dual diagnosis was one of six. And so of course it's isolating, but the other people who have gone through a similar path, it doesn't [00:38:00] need to be the exact same path. are there. And I do think it's so important when you feel up to it to find people who have walked a similar path and to find these organizations.

And since it is mitochondrial disease awareness week, you know, if you are listening to this, you can absolutely start with mitoaction, which full disclosure I'm on the board of. So, you know, I have a vested interest, but UMDF, you know, there are organizations, but really whatever a diagnosis is. And that's the beauty of living in this day and age, which is you can find those people.

I've had people reach out to me from India, from so far away. 

Susan Geoghegan: I became best friends with a mito mom in Norway. Last year I hopped on a plane and flew to Norway to meet them. Mitochondrial disease has brought so much. bad, but it has brought so much good to my life. Had you told me eight years ago that I would have two terminally ill kids and become friends with a mom in Norway and then just one week out buy a ticket and fly to Norway because my kid was in heaven and the other one was stable and her kid was stable and we backpacked around Norway.

Jessica Fein: You know, we should say we're [00:39:00] talking about these very, very, very rare diseases, but mitochondrial disease in general as a body of diseases is not that rare. It's not rare at all. So many diseases have a mitochondrial element to them. 

Susan Geoghegan: And to say that you have Mito is almost as generic as saying you have cancer.

There's so many different types of it. And my kids have FBXL4 Mito. They are on the more severe end of the spectrum. There are kids with FBXL4 that are walking and talking. It's such a fickle disease and the science isn't there yet. They're working on it, but it's not completely there. So just because they say this is how it is, these kids and their little mitochondria do what they want.

Jessica Fein: Well, I just always love talking to you, whether it's on your show, my show, or on the phone with nobody else listening. I love talking to you and I am penciling in next September. 

Susan Geoghegan: I am so excited. Get your hot pink clothes ready because I'm there and our girls better be putting some rainbows in [00:40:00] the sky that week.

Jessica Fein: Thank you so much. 

Susan Geoghegan: Thanks for having me. 

Jessica Fein: Here are my takeaways from the conversation with Susan. Number one, it is possible for two things that are polar opposites to sit together and hold hands. Number two, take it one day at a time. How you feel today may look really different from how you feel tomorrow or next week or next year.

Number three, Susan says the thing she would do different if she had the opportunity to do it again is to be more present and focused on the right now. I hope you learned a little bit about mitochondrial disease this week. I'll continue to do everything I can to spread awareness whether or not it's the week that the calendar decides is mitochondrial disease awareness week.

I'd be really grateful if you'd take a minute to rate and review the show. Thanks so much for listening. Talk to you next time.