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Paulina Polanco

Paulina Polanco, SRF volunteer and sibling to twin sisters with SYNGAP1, shares her very personal story of love, hope, and the loss of what could have been.

Show Notes

The most moving episode yet! Paulina Polanco is caregiver to her twin sisters Libertad (Libby) and Esperanza (Espy). She delivered a raw, personal address at the 2023 SYNGAP1 Conference hosted by SRF. This episode not only includes that speech, but Ashley talks candidly to Paulina to expand upon her life with twin Syngapians. See all episodes at ⁠⁠⁠⁠⁠Syngap.Fund/Stories⁠⁠⁠⁠⁠.

⁠Warrior Story⁠⁠ for Libby & Espy⁠

Paulina’s SRF Bio

Connect with Paulina:

Blog Posts Written by Paulina:

Other Links:

Ashley’s SRF Bio

Connect with ⁠⁠⁠⁠⁠⁠Ashley:

SRF & SYNGAP1 Info:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

⁠Pre-register⁠ for SYNGAP1 Conference 2024

Connect with SRF (@curesyngap1):

Family Zoom Meeting (Weekly on Wednesdays, 8PM ET):
⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Syngap.Fund/SRFfam⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Meeting ID – 972 0059 2178 Passcode – 848417

Sibling Zoom Meeting (Monthly on 1st Thursday, 8PM ET):
⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Syngap.Fund/SRFfam⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Meeting ID – 972 0059 2178 Passcode – 848417

Comments: ⁠⁠⁠ed@curesyngap1.org⁠⁠⁠

Music: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠In the Forest… by Lesfm from Pixabay ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Episode 026 SYNGAP1 Stories, February 13, 2024

#SYNGAP1StoriesLibby #SYNGAP1StoriesEspy #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp26 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #SyngapConf #SYNGAP1Siblings #Caregiver #WinnieThePooh

Below is a transcript from the audio:

Ashley Frye

You attend some conferences, not like

Paulina Polanco

Oh yeah, 

Ashley Frye

SRF stuff, but like, you are an advocate, maybe? Would you say that?

Paulina Polanco

Yeah, actually, I have attended Global Genes. And one in Mexico was a neuropediatrics conference in Mexico. And then also the most recent one was epilepsy awareness. It was cool. It was at Disney. In Anaheim.

Ashley Frye

Oh, that’s right.

Paulina Polanco

Yeah. It was really cool. We didn’t go, unfortunately, to the park, but it was like… on the last day.

Ashley Frye

Yeah.

Paulina Polanco

A lot of people came like dressed up in their costumes. Oh, because it was also on Halloween. Ashley Frye

Oh, that’s really awesome. 

Paulina Polanco

Yeah, so that was fun.

Ashley Frye

Hello and welcome to SYNGAP1 Stories, hosted by me, Ashley Frye. Every couple of weeks, I spread information and awareness about a rare disease that affects my son, Nathan. It’s called SYNGAP1. I chat with parents, siblings, caregivers, and others about the challenges and successes of their journey with someone impacted by SYNGAP1. I hope you enjoy today’s conversation.

Hello, everyone. This episode is going to be very different from the ones we’ve posted previously. We have heard from one Syngapian sibling, Nancy Kessler, discussing her sister, Karen. In this conversation, we will have another special sibling, Paulina Polanco. She has a story that is absolutely moving and one that you will relish, I promise. Paulina lives in Manteca, in Northern California, with her family. She is 26 years old and has four sisters. Two of which are twins named Espy and Libby. They are Paulina’s Syngapian siblings. They are 20 years old and only received their diagnosis in 2020. And prior to that, Autism was their main diagnosis and what everyone in their family really attributed their many symptoms to. Her other sisters are Victoria and Camila. And we are so, so privileged to have Paulina with us here today. Thank you, Paulina.

Paulina Polanco

Thank you, Ashley. I’m very privileged to be part of this.

Ashley Frye

Oh my gosh. We, it is, it is our pleasure. I promise everybody you’re going to enjoy this. So I want to chat about you for a minute and then we’re going to do something a little bit different this episode. So, um, let’s chat at first on the fun end, and then I’ll tell you what the plan is, everybody. Okay. So tell me what you do for a living, Paulina.

Paulina Polanco

So right now I’m a caregiver. I’m one of the twins’ caregivers. I am employed with the government—a California government program called In-Home Supportive Services—so that’s what I’m currently doing.

Ashley Frye

Yeah. I think that’s amazing. California is one of just a handful of states that actually pays caregivers who are family members to care for their loved ones who are mostly homebound. It’s a way for the state to reduce the cost of, um, caring for patients who would otherwise need to be placed in a facility of some variety. And I just absolutely love that some states are coming around to understanding the benefit of paying family members specifically to care for their loved ones who otherwise would need to be placed outside of the home. I think that’s just incredible. How has that experience been?

Paulina Polanco

I think it’s great, I think. I think there’s no other person that would be better to take care of somebody than their family. So it’s helped me a lot, too, to become more involved in their lives and everything that is going on with them. Um, so I’m aware now more than I was before of like their medical processes and like therapies and their school. Um, I’m like familiar with their teachers. So I think it’s good that way too, so that there could be one more advocate, you know, on their team. 

Ashley Frye

Yeah. Um, for them, you know. For sure. Thank you. Okay. And so at 20, they’re still in school. Are they in a public setting?

Paulina Polanco

They are. Yeah.

Ashley Frye

That’s awesome. 

Paulina Polanco

They’re in an adult program. 

Ashley Frye

Great. 

Paulina Polanco

So it’s like school still.

Ashley Frye

Yeah. Okay. And so, in addition to being one of their caregivers, you also, I’m going to call you an advocate for SRF and for Fonda Syngap. Um, so she is a kindred spirit with, um, our lovely Ed, who is also behind the scenes. So for Fonda Syngap, Paulina helps with the behind the scenes, the producing, like everything that I cannot do that makes this podcast run. She does for the Fonda Syngap podcasts that we have in Spanish. And she also assists with some graphic design; she volunteers her time to create some beautiful graphics for a variety of events or tiles or things that we have going on at random times. Always willing to volunteer her time and her skills and talents to put beautiful graphics together for us. So thank you so much for that.

Paulina Polanco

Of course. Thank you.

Ashley Frye

And additionally, so one of the things that I am most jealous about, simply because, as a caregiver, you know, full-time parent, caregiver, and someone who works full-time out of the house, I don’t get to travel to a whole many conferences. The ones that I’ve been to have been SRF specific, which I’m grateful that I’ve had the opportunity to go to. But Paulina is one of the people who has gone to a lot, I mean, I say like a lot of our conferences across rare diseases and epilepsy. And so she has been to Global Genes and Neuropediatrics in Mexico, and most recently, the Epilepsy Awareness at Disney in Anaheim. So thank you for being a representative for our community, for our patients, for your sisters. Know that it’s not always easy to leave and go and visit and, you know, sometimes just be present in those settings. So thank you for doing that as well. How have you, how has your experience as a conference goer been while also knowing everything that you do with caregiving?

Paulina Polanco

Um, it’s been really good to be able to connect with other people who are there. I’m searching for information um or also going to learn more about the certain like rare diseases or neurological diseases. Um and getting to know other doctors, other advocates. Um so it’s been great to expand, you know, like my, my awareness and my knowledge of just like this whole community of like rare disease and, uh, SYNGAP. Um, I’ve through that, I’ve learned a lot more about SYNGAP. Um, so it’s been really great to be able to, to learn and connect with other people.

Ashley Frye

So Paulina not only attended the SRF conference in Orlando in 2023, but she was a presenter on Family Day. And in my opinion, her presentation was one of the most moving. Not only of that day, but of potentially all of the presentations and discussions I’ve ever heard and had. Partly because of how open and raw she allowed herself to be, but because she was able to put into words thoughts that I have had as a parent of a neurotypical child who is expected to care for his Syngapian sibling. There are so many emotions that parents feel for their sick child, and they’re compounded by the additional feelings that come with watching our normally developing children accept a life that we never wanted for any of our children. A room full of emotionally primed parents and caregivers at that conference, Paulina delivered her amazing perspective on what it is to be a sibling these days. The entire room was moved by her, and I’m fairly positive there wasn’t a dry eye in the room by the time she was finished. So now you’re going to hear that recording of Paulina’s presentation at the conference in Orlando. And understandably so, opening up the way that she anticipated was daunting. And so she asked our very own J.R. to sit in with her on stage to help guide her along. And as you’ll hear, Paulina reads passages that she wrote. After that audio, she and I will have a discussion to unpack some of what she talks about. And a disclaimer now, if you’re a crier like me, you may want to get a box of tissues.

Paulina Polanco

Hi, everyone. My name is Paulina Polanco. I’m a sibling to two 20-year-olds. They’re twins. And their names are Esperanza and Libertad, Espy and Libby for short. They were diagnosed with SYNGAP1 in 2020, and we didn’t realized what an important diagnosis that would be until Espy had a grand mal seizure for the first time ever in 2021, right before New Year’s. That night completely changed our lives. Before that, we thought that Autism was the main reason for their condition. And we thought that SYNGAP1 was just another diagnosis to add to the list. Sorry, I’m really nervous.

J.R.

Okay, can you tell us what’s the most important part of what you have been thinking? I know that I wrote a book that you’re going to hear more about later today, and I wrote it in order to sort of get my own thoughts down and to sort of know myself better and in doing so it really helped me and I know Paulina here, as a sibling, has very bravely written some of her thoughts down, and she wants to share them too, and I know for sure it’s going to help her. So that’s what we’re doing. Can you tell me what the most important part is?

Paulina Polanco

Thank you, J.R. So the night that she had her seizure, I was the one who found her. And that experience brought a lot of emotions to the surface that I had never really paid any attention to. So I’m going to read some parts of what I wrote. It’s going to get a little deep, so bear with me. 

Coming home from experiencing new parts of life and making new memories usually would have felt comforting. Back to my home, my sanctuary, where I’m most comfortable. So why was I feeling anxious on the drive home? It’s not that I don’t want to be there, and it’s not that I don’t want to help. I want to help in any way that I can because my sisters need all the support that they can get. And I know how heavy being a caretaker can be, both physically and mentally. And at the same time feeling guilty and ridiculous all at once because I just went out and had a great time. Am I ungrateful? Am I selfish for wishing I could do these things more often without having to worry? In 2006, when they were diagnosed with Autism, there wasn’t much known about Autism. It was all new to us and seemingly new to the general public as well. It was scary, daunting, and extremely confusing for me, being that I was just nine years old. If the twins would have been born now, we would have had much more knowledge and would have been better equipped, or at least a vague understanding of what Autism was. And, 14 years later, with the SYNGAP1 diagnosis, it felt like déjà vu. My parents are extremely supportive. They encourage me to go out and live my life, but I can’t help but feel the way that I do. The thoughts of what it’ll be like when they’re gone linger around in my head frequently, to the point where I’ve lost sleep over it. When I do go out and have fun, I forget just for a moment about my reality. In those moments, I’m just me. I’m not my sisters’ keeper. I’m not a caregiver. I’m just me. It’s freeing. But when I come home, it all hits me again. The fear, the anxiety, the unknowing. And again, I feel guilty because it’s not anyone’s fault. I would never want to make the twins feel unwanted, even if they don’t know what that would mean or if they wouldn’t care. I know, and I care. They feel the love and care that we have for them, and it shows when Espy hugs me and presses her cheek against mine. And it showed when Libby’s teacher said she was in a great mood the day after their birthday when we bought them an ice cream cake and sang in unison several times, just to make Libby laugh. In reality, I think I’m happiest when my sisters and my parents are happy. But there’s a deep sadness when I think about how it would have been if they could have learned to talk and hold conversations. I wonder if I would have gotten into fights with them for stealing my clothes, if we would have helped each other do our hair, had movie nights together, or sister dates with our other sisters. Sometimes I hope to see them in my dreams. I feel like I’m mourning someone who never existed, never got the chance to exist. I know there’s really no point in that, but I can’t help but wonder. Despite all that, the twins deserve to be loved and cared for as they are, for what they are and what they are not. Their hearts are pure. They show us. Their raw emotions, their frustrations when they aren’t being understood, their joy at things we will never understand, their pain that they can’t express, their boredom that they don’t know how to cure. I feel calm knowing that they have us to go through all of that with them. Libby and Espy. Words can’t explain how much I love them. I love to hear them laugh. I love to see and hear about the cute and funny things that they do and how they surprise us with the things that they’ve learned. I’m proud when I hear them say things clear as day, even if it’s just to get what they want, such as, “I want cupcake,” or to get us to leave with, “I won’t buy.” I admire the incredible resilience they have despite all the hardships they’ve gone through. Similar to what Winnie the Pooh once said, if they live to be a hundred years old, I hope to be a hundred years and one day so that they never have to live a day without feeling genuinely cared for and loved. Sometimes I have to remind myself that I’m their sister and not their mom and I’m allowed to make my own life too. Thanks to the twins, I am who I am. I owe my heart to them. I’m more understanding of humanity because I see it fully in them. I try to figure out what they’re feeling, what they want, and why they do what they do. I examine how they react to things. I think about what might be causing certain behaviors so I can help reduce them or avoid them and make things easier for them. Helping them helps me be better. I feel so blessed to be able to be part of their lives, to know what pure, unconditional love is, and to know how it feels to give it without expecting anything in return, and being okay with receiving it in different ways that we aren’t used to seeing. Growing up with Syngapian sisters was a lot of things. It was unusual. It had its struggles, but it isn’t something I would trade. It feels like there’s no light at the end of the tunnel. But maybe that’s because in reality, there is none. There are windows. There are parts where it’s dark. Parts where it feels like it’s not bright enough. But there’s light all along the way. It’s all an ongoing process. There will be hard times and there will be easy and amazing times. I’m grateful for all of it. And I’m grateful that so far my family and I have had the will to face these things and grow through them. And I hope we can continue to have the will and strength to keep going. Thank you.

Ashley Frye

Okay, so… Everybody take a moment to dry your eyes. I know that at the end of Paulina’s presentation, the entire room was standing and clapping and giving her an ovation. That was just so, um, so well deserved. And the thing that I noticed throughout that discussion, Paulina was like, “It was almost as if we were watching you grow up in front of us because… It’s not easy to open up that way, especially with a crowd of people watching you on a stage and that many people and about something that is so deeply personal.” So for me, it was just like, this woman has strength that is so hard to tap into. And I was just watching you and I really felt like I was watching you mature right in front of my eyes and I was so moved by your strength, and by your words, and your kindness, and your love for your sisters. Desire to want to make the world better for them and I, um, I don’t know if I thanked you in person, but if I didn’t, thank you. 

Paulina Polanco

Thank you so much. That made me choke up a little bit. 

Ashley Frye

I choked up many times thinking about that speech, and I was teary-eyed then. Cried when I re-listened to it. So thank you. Have you always written down your feelings as a coping or a processing mechanism?

Paulina Polanco

Not always. For usually, you know, growing up, I don’t really… no. I don’t know if I even realized that I was trying to cope with things. But something that I would always kind of turn to would be, like, creativity. I always enjoyed, you know, painting or drawing, just making stuff with my hands or making things that are visually fun to look at or writing stories or just anything, so that kind of helps me. You know, if I’m feeling too many difficult emotions, it kind of helps me, like, unwind and release a little bit of that. And then, once I’m ready, I can release the emotions in a different way, like writing them down. I’ve also done like video diaries or like voice memos where I just talk and it just helps me get it all out of my head. So that it’s not just swimming around in there and creating false narratives.

Ashley Frye

Mm-hmm.

Paulina Polanco

It helps me a lot to just release it in those ways. But writing has been one of many helping processing mechanisms.

Ashley Frye

It was absolutely beautiful just listening to how you just like laid everything on the page. And I mean, I really like, for me, it felt like a story that was very well thought through and for you it was probably just like what was coming to your head. I just, I admire that so much because I often want to sit down and do something like that but have a hard time, like, really coming up with the right words or not judging myself in the moment. And I mean, I could very clearly tell that you did not judge yourself for any of the things that you were feeling in that moment. And that was probably, um, why it was so touching and so moving is because it was, I mean, it was just real. It was very real and honest. Um, so I mean, good, good work. 

Paulina Polanco

Thank you. 

Ashley Frye

I’m sure. I think I heard some people ask you at the conference whether you have considered being a writer or an author. And I would echo that you have a gift in that space.

Paulina Polanco

Wow, thank you so much. It’s really nice to hear that because sometimes I do struggle too with finding the words. Um, and that’s why also I do tend to like do voice memos or video diaries because like sometimes my brain is faster than my hand is for writing. It took me a lot of time to be able to come up with that release of emotions in the writing.

Ashley Frye

Mm-hmm.

Paulina Polanco

But, yeah, I always try to be as honest with myself as I can be because it’s just, like, it’s my feelings, you know, and I can’t ignore it because if I ignore it, it just comes back stronger. You just have to be honest with yourself.

Ashley Frye

You’re right about that. You are 100% correct. Okay, so let’s unpack some of it. Some of what you shared. So you mentioned feeling selfish for things like going out with your friends and having a good time, knowing that your sisters are at home and that your role as a sibling caregiver always awaits and that never goes away. But if I were asked to describe you, selfish wouldn’t even be an adjective I would use. It wouldn’t even come to mind. So why do you think that you feel selfish for wanting to live a normal life?

Paulina Polanco

Honestly, I feel… I feel guilty sometimes because, and I know it’s not my fault or anybody’s fault, but it’s just like, why do I get to experience this life and they don’t? Yeah. It just, it feels like unfair. And I feel selfish because I think, well, I have this opportunity and I have, you know, the capabilities to think of solutions and ways to help them out. So sometimes I just feel like I’m not doing enough. And I think a lot of us feel that way. I’m just their sibling. And I feel like I could do more to help them because my parents are immigrants. They came to this country like when they were already older and so I grew up here. And I know the language a lot better than they do. And we’re familiar with everything here.

Ashley Frye

Right.

Paulina Polanco

So sometimes I feel like, well, if I don’t put in as much effort or as much time, then my sisters are missing out on a lot of things that could be helping them.

Ashley Frye

I can share that I think that you do more than… should be asked of anybody. So don’t let yourself feel that bad about it. Because, like you said, we feel guilt over something that we have no control over. And that just kind of comes with caring for someone who has an ongoing disease like this. Gosh, I don’t find you selfish at all. I’m in awe of you for being as committed as you are.

Paulina Polanco

Thank you. That means a lot.

Ashley Frye

I love when you say that you’re happiest when they are happy. And you also mentioned being sad, thinking about like the what ifs. They could talk to you. Can you expand on that a little bit?

Paulina Polanco

Sometimes my older sister and my younger sister and I will have sister dates. And we, you know, just a few days ago, we made vision boards. We had a bunch of pictures cut out and we would post them on boards—just things that we want to see happen for us this year, things that we want to achieve. And then her mom joined in, and we were just listening to music and like laughing together. And it was really nice. And sometimes I just wish that all of us could do that together. Yeah. You know, I think about the three of us—my oldest and my youngest sister and I—we’re all very close. And it just makes me sad sometimes that like we can’t all five of us be close. Yeah. So it’s, you know, sisterhood is very precious to me. My siblings are like, my whole family is like my, like… the most important people in my life. So just not being able to connect with the twins on the same level as I do with my other sisters is sad, you know, like… you know, you wish you could connect with them, but yeah, it’s harder.

Ashley Frye

Yeah. For sure. I was so excited when I learned I was pregnant with Nathan because my boys are 16 months apart and I was thinking, this is perfect. They’re going to be close in age. They’re going to be best friends. And, you know, like, in a way, yes, that’s still true, but, like, it’s not what I expected, right? It’s not what anybody expected. Yeah. But, yeah, like, wanting to connect on the same level with your other sisters. 

Paulina Polanco

Right. 

Ashley Frye

I hadn’t, I mean, there, there are some things that even as a parent, I haven’t considered, right. ‘Cause I only have the two and one is neurotypical and the SYNGAP1, but, but like… I haven’t really, I haven’t let myself explore what it would be like with multiple children and what those dynamics would be and how they would play out on a daily and lifelong basis. That’s interesting too, to hear those perspectives as a parent.

Paulina Polanco

Mm-hmm. Yeah. I remember when I was little, I would always ask my mom for a younger sibling. And, um… One day she came home and I came home from school and she picked me up and she was like, “Guess what? You’re having a little sister.” So it was, like, really exciting. I thought, too, like, “Oh, my God, we’re going to be best friends.” Like, it’s going to be so much fun. But, you know, like, life just happens sometimes. And they are, like, we are. We show each other love. As I mentioned at the conference, they have their own way of showing it. It’s sad, but it’s still a beautiful relationship that we have with them.

Ashley Frye

I love that. So you have a phrase, something like “You’re mourning someone who never existed.” And that really resonated with me because when Nathan was diagnosed, I grieved for him as though I had lost him. And I know, like, I’m a rational person. I know that he’s alive and he’s very present in my life. But I went through a period at first that I didn’t initially recognize as grief. And I now know that I was grieving the life that I expected for him before I was able to accept and really come to terms with the life that he’ll actually live. You think that what we’re feeling is the same? 

Paulina Polanco

I think so. Yeah. I think it’s just difficult to think about, like we were talking about, like the what ifs, like what could have been, as a parent, of course, and as a sibling. I think it’s the same feeling that you know, there’s this person that could have been my best friend, or there’s, you know, she could have been… who knows, you know? So yeah, it’s like grieving somebody that never got a chance to exist.

Ashley Frye

Yeah. Stinks on so many levels. Okay. So I often tell people that I wouldn’t trade my experience as Nathan’s mom. And I hear myself saying something like, “I wouldn’t trade it.” I wouldn’t do it differently. But then… I’ll think about that later and said to himself, like, “No, I would absolutely trade this because it sucks.” Why did I say that? Am I trying to make the other person feel better? I’m trying to make myself feel better. Like, surely… like I didn’t do anything to deserve this, right?

Paulina Polanco

Mm-hmm.

Ashley Frye

I hear you say something nearly identical. That you wouldn’t trade your life as a Syngapian sister. And it breaks my heart. And I heard Liam say that too. And I don’t understand, even though I say it myself. Why do you think we do that? Do you think… oh… I wonder… if it really is just trying to make ourselves accepting of the life that we live, with our Syngapians, or… I don’t know. I struggle with this a lot.

Paulina Polanco

Yeah. I think that in a way it is kind of trying to help ourselves accept it. Because I feel like the only reason I would trade it would be for them. And… I… if I could do anything, I would want them to live a regular life, an easier life. So that would be… obviously, the reason why anybody would trade it. But I think that… saying that, you know, we wouldn’t trade it is also true for me and I’m sure for everybody else that says it because you know, it’s a different life experience. It has a lot of challenges. And it’s not easy, but in a way… it helps you grow so much as a person. It forces you to see things from different perspectives and put yourself in their shoes because you don’t get the same that you would with somebody that’s neurotypical. They can’t tell you, like, “this is bothering me” or… “this hurts” or “I love X, Y, and Z.” They can’t clearly express, you know, how they feel or what they’re thinking. So you kind of are forced to become more empathetic. I think, as somebody who cares about them and loves them, you just grow a lot as a person. They teach you, you know, pure love. They show you that you don’t need words to show it. I think… although it is in a way like for ourselves to feel better and helping us accept it, it’s also true because we can’t change it. That’s just the truth. There’s nothing that we can do. They are who they are, as Syngapians. They’re innocent and they’re pure. Um, they’re so sweet and they’re funny. So like, I wouldn’t want them to be different than they are.

Ashley Frye

Yeah.

Paulina Polanco

You know. Yeah.

Ashley Frye

I’ve definitely noticed, about siblings, that… there’s just so much empathy and compassion and understanding and patience that, I mean, I’m not sure that you can teach that. I think having the experience of being somebody’s brother or sister who has a serious disease, or genetic condition, or diagnosed with cancer—I think a lot comes with that. And SYNGAP1 specifically has so many unique challenges that really force people in their immediate families to just reconfigure how they process the world and how a Syngapian processes the world and to make that adaptation. It’s, it’s tough. And it’s, it’s almost like you’re doing it in stride, right? ‘Cause it’s a never-never changing, that you have to be fluid and you have to adapt quickly. And I admire siblings so much because of how difficult it can be. And then, like, I mean, I really… every time I hear somebody say, “I wouldn’t want a different brother” or “I wouldn’t want a different sister” and “they’re the best.” And, you know, I, I just, it, it makes me melt. It brings a lot of joy to me as a parent.

Paulina Polanco

Mm-hmm.

Ashley Frye

I mean, we look at these like precious children who are sick and we just like covet them, right? And then we look at their siblings and it’s like… we did something really right here. These siblings are just truly incredible and amazing. And I feel like, especially right now, you have just taught me something more about… about just understanding and being empathetic and knowing that, while things would be different if our loved ones didn’t have SYNGAP1, we would also be different. We wouldn’t be half as compassionate or patient or empathetic and understanding of the world larger than just us.

Paulina Polanco

Mm-hmm. Absolutely, I agree.

Ashley Frye

Mm-hmm. Okay. So you also have a metaphor that you write and talk about, about windows rather than there being light at the end of the tunnel. And that, for me, was a very accurate way of thinking about the day-to-day reality of living with someone with SYNGAP1. Can you expand more of what you were thinking about that? Because it makes intuitive sense to me, but I really want to know what… what drove you to that realization?

Paulina Polanco

Honestly, while I was writing that, I… I didn’t know how to end it. I wanted to end it on a positive note. Because I just feel like… but, you know, like, why wouldn’t it? Yeah, um, so I, it, and I just didn’t feel like a light at the end of the tunnel was like the right thing to describe it as. Yeah, um, and so I thought, windows, yeah, because you know, it’s not always going to be so black and white, it’s not always one thing or the other. There’s good times and there’s bad times. And sometimes it was good and bad at the same time, you know, when Espy had her first seizure for the first time. You know, it was the first time we ever, you know, saw anything like that happen to them. It was really scary. I didn’t know it was happening. It was just very new. Um, so like, that was really hard. But then, just like a few hours later, my dad sent us a picture of her at the hospital and she was sitting up and she was like listening to her music that she was listening to before it even happened. It was like nothing had happened. I feel like that was a little window for us just to see if she was okay. And I think that, you know, you kind of have to accept the duality of things, of feelings, the duality of life, because you know, there’s two things that can exist at the same time and you can feel like you’re in a tunnel. But there’s also light shining on you. The window. You know, our family members have this disease that’s really difficult to deal with. But there are beautiful moments too within all of it.

Ashley Frye

Yeah, that’s so well said and so well explained. You are mature beyond your years, my dear.

Paulina Polanco

Thank you.

Ashley Frye

Yes. Okay, so something that I, as a parent of a Syngapian and a neurotypical child, want to know is how… we can help you carry this load for so long that is so heavy and what we can do to support you not just as somebody who is expected to be the other’s caregiver when we’re gone, but but as your own individual person. So I try really hard to intentionally plan things for Liam that have no… nothing to do with Nathan or SYNGAP1 or anything, but I always feel like I should be doing something more. So I would love to hear your perspective about what we, as parents of both sick and normal, beautiful children, what can we do to better support you?

Paulina Polanco

I feel like just always keeping the neurotypical kids in mind. Um, because we know that, you know, our siblings require a lot of time and energy and attention because of their disease. So… you know, I was very understanding of that. I think I just had to be so, um, but something that my mom did when I was growing up was that she would always go to, you know, my classrooms to help in class. She was always, like, a parent volunteer. Yeah, you know, they never missed, like, the recitals or, you know, the plays and birthdays; they always like made sure to keep us feeling like we’re their kids too. You know, like we’re not just somebody else that’s going to be there to care for our sick siblings. Like we’re also their children. So I think just always supporting the kids who are there as well. Yeah, always cheering them on too. And I think it’s also important to not only give them their own opportunities, but also include them in, you know, their Syngapian siblings’ lives. So that they, you know, know what it’s like—just be part of their siblings’ lives, I think is really important.

Ashley Frye

Yeah. Would you say that… that it’s important for me to think about offering therapy or a variety of coping mechanisms? What would you say we could do intentionally from the start that would be beneficial for our neurotypical sibling?

Paulina Polanco

Um… I think therapy could help. I remember we would go growing up, not that often, but we did go once. I love therapy. I’ve gone to it as an adult and I think it’s great. I think everybody benefits from it. But I would say that only go if you feel like it’s necessary, if you need it. Okay. You know, and if you feel like you’re okay without it, then… and, you know, you can go on and off whenever you feel like you need a little bit extra support. I think that’s great, especially for kids. You know, going, um, and just feeling heard and seen by somebody who is trained to help out or just with parents, even—like, it doesn’t have to be with a stranger. I think, um, yeah, just always making sure that the kid is feeling heard.

Ashley Frye

Yeah. Is there anything that you would encourage parents to consider for when we aren’t around?

Paulina Polanco

Mm-hmm. Yeah, I think maybe just talking about it, preparing for it. Life is very unexpected. And I think losing a loved one is already very… hard. Um, and if you have to go through a loss and on top of that, still have to like scramble to figure things out, it can be detrimental. So I think preparing—when you have time—doesn’t have to be, you know, scary or horrible, but just, you know, keeping that in mind. Yeah. Because you have to be prepared. You have to be real, you know.

Ashley Frye

Yeah, if nothing, being a SYNGAP1 caregiver makes you prepared. Yeah, built into the daily responsibilities, like that’s a requirement. 

Paulina Polanco

Yeah, absolutely. So I think that’s important. 

Ashley Frye

How can we do a better job? And, you know, lots of people have different ways of doing everything, but from your perspective: how can we do a better job of providing space to live—like to just let you live without being a caregiver? What can we say or do to just give you that space?

Paulina Polanco

I think it’s important to give them space, just like whenever. Say, if they want to go out with friends, not saying you have to stay home because your sibling needs help or just letting them live their lives as they would normally.

Ashley Frye

Yeah.

Paulina Polanco

For me, my parents would always allow me to go to my friends’ houses. You know, have friends over. And then when I graduated high school, I moved away to college and I got to live independently for four years. And I think that was really good for me as an individual because I got to… grow and learn about myself, you know, without my family in the background, you know? Yeah. Yeah, just allowing them to create their own personality and figure out who they are on their own as an individual. Yeah.

Ashley Frye

Yeah, man. I’ll tell you, nothing about SYNGAP1 is easy. And sometimes the hardest part, I feel, is preparing Liam for… when I’m, when I’m not here and like making sure I do right by him to ensure that like… I don’t wear him down, you know? And I mean, he’s going to be eight in a couple of days. And I keep thinking like, how in the heck do I have an eight-year-old, first of all, but then also like he’s so much older than eight years old, you know, like he was kind of forced to grow up a little bit faster. Yeah. Uh, than, than other eight-year-olds. And I’m so proud of him in so many ways, just like I’m proud of you in so many ways. Mm-hmm. It’s… it can be heavy. And I think that sometimes I need to remind myself that there are many, many positives about living the life that I live. And as long as I’m intentionally doing my best to provide space for my children to each flourish as best as they possibly can, then I think I have to be okay with that. Like it’s not gonna be perfect. Nobody’s perfect. The situation’s never going to be perfect, but if we can get it good enough, that’s what I need to strive for.

Paulina Polanco

Yeah. Yeah, absolutely. Just always trying your best.

Ashley Frye

Yeah. Okay. So the thing that I like to ask everybody at the end is: if you have any advice for how to live a happier life with SYNGAP1, what would it be? 

Paulina Polanco

Oh. That’s a good question. I don’t know. I think, like, what you just said, keeping the positives in mind and not just focusing on the challenges and the hardships.

Ashley Frye

Yeah. Definitely appreciating people like you in, in our Syngapians’ lives. That’s, that’s a way to live happier with SYNGAP1 is knowing that we’re not the only ones trying to live happy with SYNGAP1. 

Paulina Polanco

Absolutely. 

Ashley Frye

Hmm. Well, Paulina, I have not just like wept as a host until tonight. So thank you for bringing that out. 

Paulina Polanco

I’m honored. 

Ashley Frye

Thank you. It has been a lot of fun to get to know you and to watch you just interact with our community and to learn from you and your experience as, um, as a Syngapian sibling caregiver. Um, so thank you. And thank you for agreeing to chat with me and for all that you do for your sisters and your family and for the SRF community.

Paulina Polanco

Of course and likewise, thank you so much, Ashley. It’s been great chatting with you.

Ashley Frye

Yeah, I wish we could do it more often, but I don’t want to cry as often. All right. Well, thank you, everybody. I hope you enjoyed this episode. We really enjoyed it on our end. Take care.

If you enjoyed this episode, don’t forget to subscribe and like us wherever you’re listening. For more information about today’s guest and SYNGAP1, please check out our show notes. Your suggestions are always welcome. Please email us at ed@cureSYNGAP1.org.