Let's Get Curious with Replenishing Soul

Episode #13 "Rare Disease, Big Impact: How One Mom Is Creating Change"

• Lori, Dorothy & Jennifer Sills • Episode 13

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In this heartfelt episode, we explore the transformative journey of parenting through the lens of one mother’s extraordinary experience. Our dear friend Jennifer Sills candidly shares the challenges and triumphs of raising two children with unique needs: Juliet, who has Okur-Chung Neurodevelopmental Syndrome, a rare genetic condition, and Jasper, who was later diagnosed with dyslexia.

Jen opens up about the emotional and logistical complexities of navigating diagnoses, advocating for her children, and building a global community through her nonprofit foundation. From the intensive early interventions for Juliet to the moment of relief and clarity brought by a diagnosis, this episode sheds light on the resilience, determination, and hope that define her story.

We also delve into how Jen’s journey with Juliet prepared her for supporting Jasper’s path, and the vital importance of community, genetic testing, and accessible care. Whether you're a parent, educator, or advocate, this episode is a powerful reminder of the strength in seeking answers, supporting others, and never giving up on making a difference.

Through candid conversations, we explore how to manage overwhelming situations, honor the tough moments, and find strength in vulnerability. With a focus on resilience, self-compassion, and staying connected to your true self, we discuss how to face the difficulties of life without losing sight of the wins—no matter how small.

Tune in to hear Jen’s inspiring story and learn how her family is driving change in the world of rare diseases and learning differences.

If you found this podcast to be helpful, enlightening or just relatable please consider writing a positive review on your favorite podcast app and please don't forget to subscribe.

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Thank you for your interest!

Show notes:
CSNK2A1 Foundation:  https://www.csnk2a1foundation.org/

Okur-Chung Neurodevelopmental Syndrome:  https://rarediseases.org/rare-diseases/okur-chung-neurodevelopmental-syndrome/

Probably Genetic:  https://www.probablygenetic.com/

Once Upon A Gene:  https://effieparks.com/

Once Upon A Gene Podcast:  True Stories of Raising Rare Kiddos
https://effieparks.com/podcast


Disclaimer:
The information shared on this podcast is for informational purposes only and is based on the opinions and experience of Lori Dorothy and their guests. The content should not be used as a substitute for professional medical advice, diagnosis or a treatment. Always seek the advice of your healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you heard on this podcast    

/Welcome to let's get curious. The podcast for women and mothers seeking connection, support, and inspiration. We are friends, mothers, and therapists. Laurie, a physical therapist and Dorothy, a speech and language therapist. Together. We share our personal stories, including IVF birth experiences and navigating children's learning difficulties. Through our discussions, we uncover profound lessons for personal growth. Join us on this journey of curiosity, compassion and empowerment. Welcome to let's. Get curious

Lori:

Hello, everyone. We are back again, Dorothy and I, and today we have a very special guest. We have Jennifer Sills, who is a friend of mine and my gosh, Jen, it's, how long have we been in each other's lives?

Jen:

20 years.

Lori:

Yeah, we met when we were just dating our significant others. And then of course it turned into marriage and babies and that's why we're here today to have this conversation because all three of us share a world of having to navigate for children with differences. And, I, of course, I'm going to hand this off to you, Jen, to share with us, the world that you live in. On a daily basis, but I have to say, like walking this path with you, um, from the very beginning and trying to figure out, what the challenges were, especially with your daughter, Jules, and seeing how far you've come and what you've created. And I say this to you all the time, just warms my heart. When I read. all of your posts on Instagram of what has been accomplished, what is still needing to be done, what you share emotionally and how you open up. I mean, I literally cry every single time I read one of those because it just, one, it's always written so beautifully and there's You're an open book, and you can feel that when you share. And then, of course, just knowing you personally and being here from the beginning, and just knowing all of that, it just, yeah, warms my heart even a bit more. And that is also why Dorothy and I wanted to have you on today, because you bring a lot of insight. That I feel can just help the world, mothers, women, whatever it is that we are navigating, for our child or children. And, yeah, I just think you are amazing. And I just want to have your point of view, um, shared on this podcast. So

Jen:

Well,

Lori:

we are, and I am going to, yeah, hand it off to you and you You share, you know, how you see fit.

Jen:

Probably not the way that you anticipated starting this, but I didn't ask you before, is there swearing on this show or no

Dorothy:

Yes.

Jen:

Excellent. Okay, good. Um, you know, um,

Lori:

Another reason why I love Jen.

Jen:

um, it's, you know, it, it's so interesting. Obviously, we knew each other before we had children and then navigating sort of, you know, parenthood, motherhood. Um, I know about myself that I feel so grateful for this journey, just even before we get into it, because I know I would be a total smug, a whole parent looking around at everyone thinking like, you're just not doing it right. Um, and so I I really do appreciate the perspective that it's given me, how it's humbled me greatly.

Lori:

Mm hmm.

Jen:

Um, you know, that being said, I don't know how far you want me to go into it, but just briefly, I have two children, Jasper, who is 14, and Juliet, who is 16. She's 15, almost Irish twins. And Juliet has a rare genetic condition called Okerchung Neurodevelopmental Syndrome. She was sixth in the world to be born with it. And she was born at the time we just knew something was different, but didn't know what. And it wasn't until seven years later, we landed on a diagnosis. When my Jasper was born, I knew he didn't have what she had. And he was just six. He was so different and so amazing. Um, and Jasper though, as we came to find out much later, um, due to COVID, has a learning difference and he was diagnosed with dyslexia, one of the 15 different types that there are out there. And so I think luckily for the journey that I had with Jules, I was prepared in many ways for Jasper's journey, but I'm not gonna lie, when I knew that potentially something was going wrong, of me didn't want to go get testing because I just know how difficult this journey is and I didn't want that for him. And so, you know, so many times, right, we look around and you're like, how could you not go get a diagnosis? How could you not get testing? And even me, right, who runs an organization, we started a nonprofit for our jewels, which I'm sure we can get into later,

Lori:

Going to. We have to.

Jen:

fun research and things like that. We're always pushing for more diagnoses to get more services and things like that. And even me, you know, had this trepidation of, I don't want to do this. You know, I don't want another diagnosis. I don't want to learn another landscape, right. And then too, knowing that. I just wanted things to be easy for him and I know when there's a learning difference that it isn't an easy road.

Lori:

Not at all. And that's the thing. I mean, even when you're not faced with that, just learning each child and how each child is different and just, different personalities and what you do with one is not what you do the other. And then you add on this layer of this difference, especially when we're trying to deal with education in this society. And, you know, there is, you know, there's a box that you have to fit in and when you don't fit in it, it brings up so much stuff, so much stuff. And so, that's the piece too, where, I want you to elaborate on that bit, Jen, um, you know, starting with, either child where did you start to navigate that world?

Jen:

So when Jules was born, she had, complications and I remember at the time I always say this, like, you know, I counted 10 fingers, 10 toes. So I just breathed a sigh of relief that like, okay, we're good. Everything is fine. And then lo and behold, I never knew that kids could have genetic conditions lurking in their genes that will change their lives forever. And that's what happened to Jules and our family. And on this journey of her not meeting milestones, um, you know, of course we were first, you Thrust into the world of, um, autism. That's what the first diagnosis that we received when she was two years old. And I just knew it was more than that. I just knew that, this wasn't just autism. And by the way, autism is a big diagnosis, so I don't mean it in that way, just autism, but there was a lot more going on here than that. And it. Took us, as I mentioned before, seven years of kind of searching for alternate diagnoses, which we finally got by doing a genetic test called whole exome sequencing, where they need to take blood, and they sequenced my husband and myself and her, and we received this diagnosis. Um, but before then, as you know, we were sort of waiting that five years from two to seven.

Dorothy:

Mm

Jen:

I didn't

Dorothy:

Mm

Jen:

any other way to control the situation instead of besides basically treating it like a fortune 500 company I had 16 to 19 providers, 20 to 25 hours a week of intervention. We did co treating. We had, um, quarterly meetings. We videotaped her sessions. We had each therapist watching different sessions as well, so they could learn from each other. Um, we even created kind of standard operating procedures for different techniques that some of them were developing. Um, and, um, Yeah, I didn't know any other way to tackle it than that way. I think that was too intense, by the way, just looking back on it. But honestly, I don't like I don't think I know how to do anything but for like in a right, super hyped up crazy manner. We learned a lot. And when we finally did land on a diagnosis, it was It's an interesting experience because our neurologist called us on the telephone and she said she normally doesn't give this information over the phone, but she knows that we've been searching forever and said, there's a paper out that describes this genetic mutation that your daughter has. You and your husband do not have it. It's not inherited. It's a case of bad luck. I'm going to email you this paper. Good luck and let us know what you find out.

Lori:

Wow.

Jen:

the time I was like, well, I'm, you know, relatively smart person. You know, I, I went to Berkeley. I was a literature major, right. I can read things. And I sat down to read the only information that was out there. And. I saw that there were, it was written in English. There were words in a line with periods at the end. So I knew they were sentences, but I had to look up every other word. And I always joke that like my parents always said, my degree would be worthless. And it certainly was in that moment. And I just knew we had to do better. If families were going to be receiving this diagnosis, we needed to have a place where they could go and understand their diagnosis. I'm not looking up every other word. Okay. Having other people to talk to about it. And then I knew that we are kind of living in a time Really a scientific revolution to be honest where genetic conditions once thought to be untreatable or not curable are now being treated and um I thought we can be part of this race Nothing in my background I can't do science, right? I was a lawyer, um, said that I could do the science, but I know that I'm a motivated person who can bring people together, inspire researchers and donors. And, and so we kind of joined kind of the, we started the nonprofit and we now have four employees. Just recently, which in six years time, I never thought we would have. We have a research network that spans the globe. I think there's over 75 researchers in our network at this time. We've committed over a million dollars to research. And more exciting than that, to be honest, is just the family component because people are triaging their lives every single day. Life is hard, right? They can, it's hard to put food on the table, hard enough to deal with medically complex kids, seizures, hospital stays, we partnered with a company called Wordly AI so we can actually provide. Zoom calls where families across the world can get on these calls, regardless of the language that they speak, and they can understand what people are saying, and they can also speak in their native language. So they can, they can share information. And we've had, I think, close to 50 of these calls. And to me, that's just so inspiring because the care that we receive, even though we complain about it all the time, I'm one of the first to complain about the care in the U. S. What it's like in Brazil is I mean, it, it, they're, they're back a hundred years, you know, in many ways. So when just having all of this experience, needing to do research on my own, really being a citizen scientist, teaching myself, I don't, or obviously I, I don't have a PhD, I'm not a scientist, but I'm as close as you can get to one, I think, without having a degree. And, I think all of this prepared me for when Jasper was diagnosed in fifth grade for dyslexia. And the good news was, is I didn't have to reinvent the wheel. And I didn't try to. Meaning there's plenty of resources out there for people who are dyslexic. I don't need to start an organization. I can lean on those people who are the experts. And, and so that actually has been a huge relief and comfort. And by the way, have zero desire to do that again. Um, so I'm so happy that that resource is out there.

Dorothy:

Jen, can you just, if you feel comfortable, can you share a bit more about what this condition is that your daughter has, the symptoms you saw? Well, I'm just thinking because a lot of families, do get an autism diagnosis and I bet there's a lot of families out there that are feeling in their gut that some, there's more, there's more. And sometimes physicians. Don't encourage further testing and going down that path and just say, you know, accept that diagnosis So could you just share a bit more?

Jen:

Yeah, absolutely. I will plug it first that actually if anyone has a diagnosis, regardless if it is autism, CP, things that we see, I mean, we've seen so many people misdiagnosed as well. There is nothing like finding your community. Right. And you're like, community. And so I highly encourage everyone if you can to push for genetic testing. It may not change things today as far as treatment plan, but just potentially finding your tribe, right? You're finding your group, which can be really difficult in autism because there's such a spectrum, right? Jules is nonverbal, you know, and then you have other kids who are incredibly verbal. Um, So, Oker Chung Neurodevelopmental Syndrome, it presents in a variety, obviously there's a genetic mutation on the CSNK2E1 gene, but the way that it presents is like many other neurodevelopmental conditions. So it's inability to speak or severe speech delay, global developmental delay, cognitive impairment. Difficulty feeding, hypotonia, epilepsy, autism, or autism like traits. So those are some of the kind of more hallmark symptoms. And that's why you can have so much misdiagnoses, right? Because someone might not have all of those, every person presents, even within Okurchung, they can present from mild to severe. 25 percent of the population so far that we know of has epilepsy, and things like that.

Dorothy:

Wow, that is complicated. And how many did you say? How many cases are there right now that you know of?

Jen:

So we, um, actually. Are kind of in charge of registering kind of everyone in the world, since we can do it in any language, there are over just over 300 families worldwide. And we suspect there are many more, you know, they're, they're embedded. We've had like, and the reason why I said CP2 is that we've had people get early diagnoses due to the difficulty walking, the late walking as well, or walking as if they're drunk and wobbling. They've gotten a CP diagnosis at first. Lots of autism diagnoses as first as well. Um, but it's kind of like autism plus. in many ways, you know,

Dorothy:

Wow And you were saying that Jules is sixth in the world, right? To be diagnosed.

Jen:

she was sixth in the world. So there were five patients identified in the paper that came out that sort of, you know, identified this new syndrome and she was the sixth after they identified the five patients.

Lori:

And now you are up to 300.

Jen:

Yeah.

Lori:

Wow.

Jen:

But we believe if the incidence rate is one in 100, 000, they believe. So if you think since 2016, when this was first discovered, um, if you look at kind of the birth rates, we are well over 10, 000 babies that have just been born in that period of time that have it. So obviously there's a massive diagnosis problem. We don't have any families in Africa because they don't have access to genetic testing. So it's a huge barrier. So there's lots of barriers to, um, Any kind of either disease learning difference, right? There's always barriers to access treatment care diagnosis.

Lori:

Yeah. I remember when you had said that when you. And she did finally get a diagnosis, for her, the relief, that it brought. And I cannot imagine, these 300 other individuals that are being diagnosed, the, the relief that you brought to these families through the foundation. And that's the stuff that just warms my heart, Jen. you know, and the work continues, right? I mean, you're not done.

Jen:

No, I was really naive when I started this. I had a seven year plan I was going to come up with the treatment and a cure and Close the doors and be done with it and move on with our lives and I have I learned a lot on this journey, one that, you know, I always say, and, you know, right now, gene therapy is at like a 2. 5 million price tag per child per, session. And I always compare it to malaria, which is a 4 pill, and we still have people dying of malaria. And so we will still have people that are not able to be treated due to an access issue. Um, there will also be people that choose not to be treated. And that happens. There are definitely people or that in their countries, it's just not available. And so we will always need a place for people to go share information, figure out, you know, what, what schooling environments, the best, how do they learn the best, how can we support them? What does it look like after they turn 22? People will always need information. So we are going to be here much longer than I ever, ever anticipated.

Lori:

And how close are you to a cure?

Jen:

Well, cure is a loaded term. Um, so I, I would, you know, I, uh, you know me, I only can be authentic. So um, I, right now we are working on drug repurposing. So to take drugs that are on the pharmacy shelf and be able to alleviate or treat, some of the symptoms. So one of the symptoms that happens in a lot of the patients and families, are inability to sleep. And so you have a lot of kids that either can't fall asleep or have disrupted sleep or only sleep three hours a night like Jules. And so we're looking at different drugs to use to help with that. We are some years out, so the other thing that we're looking at is gene therapy. And so this gene looks like it's amenable to gene therapy. And so I think at that point we're about five years out.

Dorothy:

Wow.

Jen:

repurposing much sooner. We're hoping within 18 months.

Lori:

That is amazing. And how is Jules doing today? As we're talking about, navigating the world for our children, what have you had to, fight for essentially, from a schooling standpoint? And just the, the team that you've pulled together, to help Jules to be a part of society and be a part of school. Walk us through that.

Jen:

Well, we have to fight for everything. Not only school, but healthcare. And then just for her to be accepted in whatever way that she can in the community for a world that's not built for her at all. So I would say this is where being a lawyer did come in that, um, I was very lucky that early on I met a special education attorney who educated me on, On this niche specialized law about what our rights were, what the process was. And, you know, I feel very, very lucky. It's one of the reasons why I do work for free. I'm at the foundation, um, is because I, I do recognize how fortunate we are because I can't imagine what it would be like navigating particularly an IEP. If English was my second language, and I thought that the schools. bottom line and number one concern was my child and I know people that are in education may find offense to that, but let's just be honest that their first bottom line is dollars and it has to be. And maybe the second is my child. So already our values aren't aligned.

Lori:

Exactly.

Jen:

so it has been a, um, it has been a battle at every turn to get her the services that she needs because she is so complex. And obviously that then helped me with Jasper because Jasper has an IEP and so I was already kind of very well versed in what our rights were, what he needed, but I will say that even with him, it was not an easy road.

Lori:

No. And it isn't. It isn't. And it's never done. You know, that's the piece. Right? Yeah. And, you know, trusting, trusting the hands that the IEP goes into or what, whomever you're working with and setting up these environments, it is, um. It's, it's constant. You have to constantly kind of be the pain in the ass, and that's not your intention, right? Like, you don't want to be the pain in the ass, but you have to be, to, to your point, you know? That's not, that's not their number one.

Jen:

Schools are not set up for different learners. at all. You know, as, as hard as that they try, they're just, they're just not. And it is why for middle school, we sent our son to a school for dyslexic learners to do remediation. And then on top of that, have him learn the skills he needs in order to access a curriculum that will never be built for him.

Lori:

Right. And to your point, what do the families do who don't have, The resources that I might be able to access, or any of us here on this podcast, and I mean, that's gosh, I mean, Dorothy and I, we talk about this all the time of, we have this, task of our children, we are meant to do something with this information and help. We have to create change because, we talk about, equality and inclusivity, big words, but how are we looking at that lens, and what does that really mean? Um, it's a big topic. And we want to make the world a better place. I mean, this is where it starts. And to your point, Jen, no, you're not a scientist, but you're, with all of everything that you've walked through, you can, I believe, call yourself this expert because when we have no choice and we have to dive deep and figure things out, we self educate. And that's why too, Dorothy and I say this all the time. The, the tribe. Of moms, the mom tribe is stronger than anything. And we will go in and we will disagree with our doctors. We bring education pieces to the healthcare providers, because, you know, they're all good at just staying in their lane. And when you are in a house and you are wearing multiple hats and seeing, you know, behaviors that they may not be seeing, even if you try to describe it to them, um, yeah, you have to dive deep and become the expert very quickly. Very quickly. So, uh,

Jen:

much so. I think we all just asked to be a an equal valued member of the team and that our Expertise be recognized which are we live, you know, particularly those, you know with this rare condition Every single parent is an expert in OCNDS and this is what we call the acronym for ochre terminal developmental syndrome mouthful They, they are an expert and they should, they should be treated that way, whether it's at their IEP, even though technically according to the law, you're supposed to be a member, valued member of that team. Um, and when you seek medical treatment, they do know how this shows up. And by the way, parents have the most to lose and the most to gain. So they are the most Vested person in this child, you know,

Lori:

Absolutely. And what would be, your one piece of valued information? Like right now, Jenna, you would say to other parents, regardless of what they're facing, no matter how small, how big, you know, what, what is that one piece of, of information that you would want them to know?

Jen:

oh my gosh, I mean, I feel like there's so many things, right? They're all cliches. I mean, it's all cliches. Trust your gut, find your tribe, you know, no, you know, stay strong in your worth in your knowledge. Right. I mean, these are the things. And then I would say, you know, I always say, um, you know, I equate, I've done a lot of Googling in my life, a lot of late nights, but just like a scary screen. staring back at me. And so the one thing I would say is, don't dial and don't, don't, don't, don't late night Google

Dorothy:

Don't late

Jen:

there. They're like one in the same vein for me, you know,

Dorothy:

Yes.

Jen:

there's nothing in my opinion, lonelier than the middle of the night while the world is sleeping. And you are. Staring at a screen, going down a rabbit hole, trying to find answers for your child. Don't do it. Just stop. Do it during the day. Find a different time to do it. Use your time otherwise. But that, that is one of the loneliest times on the planet.

Lori:

Mm hmm. Makes Well, yeah. And I've stopped for that reason, yes.

Dorothy:

Yeah. That you were, That was me. Oh yeah, that was me. All the time, trying to figure out, well, so many, so many things, but why isn't my child sleeping? Why, you know, why are X, Y, and Z behaviors happening? Oh, it could be, could be, be because these 20 things are the cause. Well then let's go down that path of those 20 things. And before you know it, the sun's coming up and I've gotten nowhere, but just more panicked. So I, that really resonates with me.

Jen:

You know, when you say that, it actually reminds me of actually, I think more than anything when I think about this and I even think about my own health journey. I think about there is so much noise in every space. Right. When you have a baby, you'll have your pediatrician and you'll say, you'll see the one in the hospital and they'll say, you need to clean the belly button with alcohol. Then you go to your pediatrician who you're going to be seeing for the life of your child. And they say, Oh my gosh, no, do not put alcohol on the belly button. Right. And so on this journey, in life in general, to be flexible, but to find a North star find. Your tribe, your people who you trust doesn't mean you can't veer off that path, but just commit and go, you know, because you're going to have a million. Your mother in law might tell you one thing and your friend's going to tell you another and your neighbor is going to pop into with their words of wisdom. Great. Let them, you know. But really find your North star and stay true to it because you, you will, you will drive yourself crazy. Second guessing yourself all the time. We're going to do that anyway. You know?

Lori:

Yeah. Everything that you're describing, I experienced it, you know, every day and even just how we walked out the door this morning. I was like, Ooh, this is going to be a tough week. This is going to be a tough week. And I will answer this myself, but my question to both of you is how do you. Stay connected to yourself when we go through this because it's easy to get scared. It's easy to feel overwhelmed. Right? What am I faced with? What is this? How do I navigate it? Googling in the dark? You know, it's so easy to get wrapped up. And then you're figuring things out. You at least think you are, you feel like you're on the right path, and then, you're also tired, and exhausted, and full of anxiety, and overwhelmed, and then, oh, there might be a little, you know, glimpse of, of hope, and joy, you know, a good day, or whatever it might be, and it's just this emotional rollercoaster, and, how do you keep yourself in it, girls, you know, how do you keep the hope, how do you keep the gratitude, For me, I, yeah, it's,

Dorothy:

a, it's a personal, like, I mean, we have our journey of our children and every parent again, regardless of whatever's going on, our goal is to, provide for them and protect them and get them ready to go out into the world. And then whatever other extra layers, you may have on, on your plate. So, yeah. How do you keep yourself from the rollercoaster, falling off the edge? For me, for years, I put everyone else above myself. So, it was like, whatever my child needed, of course, let's do it. You need this? Okay. And it just became all about him. And then whatever my partner needed, I would support him and I put myself last. My child wasn't sleeping through the night. So not only did I have a neurodivergent child with issues, but he also wasn't sleeping, which means I wasn't sleeping. And I quickly started to suffer. I was getting burnt out. I was more emotionally fragile. And then one day I was like, I can't do this anymore because if I don't take care of myself, I can't take care of him. So in a sense, that's sort of selfish in a way. So, um, to answer your question, I started to put myself first. When I wake up in the morning, I make sure that I do a little meditation or some breathing or whatever I can do to just connect to myself and fill myself up before he wakes up. And then little moments throughout the day, whenever I can replenish, uh, Laura, you and I are taking a great course right now, which we'll talk in another podcast, but it's all about lower brain development and learning how to connect and, and replenish, So through that, I've learned so many tools of deep breathing, tapping, all sorts of things just to get myself connected and just back in my body. Exercise, being with nature. I just try to remember honestly, lately I am thinking about who I was before I had a child because I forgot. I forgot who Dottie was, you know, fun Dottie Lori, like, you know, we have so many and I'm still fine. Don't get me wrong. Um, but when life, but it, you get dampened. That, yeah, and that's why I'm asking that question. We get dampened. so heavy that there's, I feel like there's no time to be light. There's no time to have fun. There's no time to, to play when the truth is, yes, there is. This is the time we should be playing. We need to have fun because that's what keeps us going. So, now like I, I just savor the joyful moments, even though there's bumps when we're in like those happy, wonderful, connected moments, I stop and I'm grateful in the moment for those. And that's what keeps me going. Throughout the day and then into the next day. hmm. That's beautiful, Deedee. It's needed.

Lori:

And to your point, Jen, right? A lot of this stuff ends up sounding cliche, but really is, no, but it really is the truth. I mean, as I continue to get older and learn more and, fall deeper into myself and my own knowing and my own power. And then of course, navigating this world. I mean, the reality is less is more. Less is more to your point, right? DeeDee? gosh I remember when kovat hit and you were like, you know what? I'm gonna miss this one day as much as we're afraid and you know I don't mean that but it was just the the peace and the quiet and the stillness and the simplicity of Just connecting with your family and being at home and being in your backyard And yeah, that that was a really sacred time in that respect

Dorothy:

right, right, Jen, what do you do? I mean, cause you know, you're, you're running a foundation on top of everything else that you have going on. So how do you find the wins?

Jen:

Well, again, it's, uh, again, it's that whole cliche thing, right? That, you know, you, you want to think we're special, not living a cliche. And, you know, woman in India, that's having trouble with her mother in law is, is having the same trouble I am, even though I love my mother in law, we don't have trouble, but I'm just saying in general, like we're living the same experience, regardless of what our education is, and I agree with you, it's, it's this cliche again, of, of putting on your own oxygen mask first. And it also too took me a long time. I'm, I'm what you call an administrative lover. I love doing things for other people. It fills me up. Um, at the sacrifice of myself, it actually made me, it was like a badge of honor. You know, how tired can I do things? I can do things on like no sleep. It's actually like, Amazing superpower. But it's not, and this, I feel the same way I noticed. I was short tempered and angry and I used to be called the hurricane. I brought fun wherever I went before kids. And I always tell Jason, like he, he got better with marriage and I got worse. Um,

Dorothy:

Oh,

Jen:

and, uh, but it is the same two years ago. I decided to set some boundaries that I wanted to go back to the gym, be strong, work out that I I start at 6 a. m at at the kind of latest meaning start with calls and things like that, but that I would take, an hour and 15 minutes, whatever it is per days a week. And I couldn't believe what a difference it made. It was amazing or just small things. Like sometimes I can't get to the gym because I don't have babysitting coverage or whatever it is. And so I go out in my front yard and I cut roses. And I think about in that moment, I'm doing something that I love. And so a lot of times You know, our families will say, I don't have money for a babysitter. I don't have the luxury of XYZ because let's be honest, Jules at this point is going to be with me forever. She is not flying the nest. And so I do, we do have to build in those small things. And even with our family calls, we started asking, we wanted to normalize this kind of self care, right? So it didn't seem selfish. It actually seemed necessary and part of the journey. And, would ask people, what are you doing today for yourself? Even if it's just one thing, it could like me going out to do roses. I learned so much about people. I had no idea if people would did yoga and our group, it was actually kind of awesome that they were more dimensional than just fighting every single moment for their child, you know, taking us out of that for a moment, and families that we know that have medically complex kids, like how do you find. Joy or self care when you're at the hospital with your with your child But there is something that you can do like I don't have a gratitude journal I don't have time for one, but I certainly am the same way. I will just say I was at I also went back to therapy and I know not everyone has the luxury of doing that either um, and so I feel very grateful because she taught me about self compassion which I was like That sounds so self indulgent self compassion gross Um, and it's It's really been incredible and I would say particularly in those like deep moments, like Jules sometimes will cry for nine hours straight. There is nothing I can do. She's bleeding through her clothes from her self injurious behavior. I've, and it's like a baby, like, does she have to go to the bathroom? Is she hungry? Is she tired? Is this, that, the other, and you do everything and all you can do is sit in the moment, right? And, and be present. And there is nothing in many ways more painful than watching your child suffer. In so much discomfort and pain and I didn't know what to do. I was terrified. I was terrified. It wasn't gonna end. Is this gonna be what our everyday is, right? All these thoughts, like this crazy thought train that goes through your head. And instead of stopping for a moment going, My God, this is so painful. You know, and, and, and in that moment, by the way, you know, we're like all silver lining hunters. I'm sure you have a PhD in silver lining findings. So do I, in that moment, to me, there is no fucking silver lining whatsoever, watching your child like that. All there is, is learning to cope and sit in that moment without it literally taking years off your life and destroying you.

Dorothy:

Mm hmm.

Jen:

And how I did that was again, through going to therapy and learning about self compassion and. And, um, and it's, and again, again, cliche, right? There's a million books about self compassion. It works. It doesn't make it better. It just makes it manageable or I don't know how to describe it. Like I was telling my therapist the other day, I, everyone says, happiness is a choice. And I'm like, what does that mean exactly? What does that mean? That's a choice, you know? And then luckily she's like, that sounds like toxic positivity. And I was like, whew, thank God. Because I'm like, I, I just try to prevent all of those terrible moments, I don't ever want to experience any of those again, but it's like that rollercoaster that you're talking about. It reminded me of Parenthood. Did you see that movie when the grandma's talking about how the rollercoaster makes her feel and that she likes riding the rollercoaster?

Lori:

did.

Jen:

gosh, you have to go back and watch that movie is so brilliant. It's so lovely. Anyway, I, it reminds me of that. Like. I think, right, all of us just want to prevent all of these terrible moments from ever happening again, right? We don't want to experience things over and over, but we are, this is This is life. Every single person that's here is going to have ups and downs. Um, and yeah, we, we just have to learn how to manage them and how to potentially hold on to the good ones. And there's a woman in our group, who a therapist, like an occupational therapist told her that the list of things that her child won't do will be like a million miles long. But what she should start doing is writing down all the things that are surprising that she does. And like 11 years later, she has pages and pages and pages. I wish I started doing that so long ago, all these beautiful things, like her child's nonverbal and she has pages and pages of all these amazing things that she has done. You know that, by the way, you don't think you're going to forget in a moment, but I, I do, I forget like Jules has done some incredible things and I too wish that I had written all of those down. So maybe in the hard moments I could go back and go, look how far we've come.

Dorothy:

Mm That's powerful.

Jen:

I never thought she'd be toilet trained, and she is, you know,

Dorothy:

It's amazing.

Jen:

things like that.

Lori:

Yeah. And yes, excellent point to flip that narrative. Because we are, I mean, as humans, it's easy for us to go down. That's The negative and remember, remember that before remembering all, you know, the good stuff and, you know, just to piggyback off of both of you. I mean, for me, it is, it's allowing myself to be in that emotion that I'm feeling, and if I need to cry, I cry. If I need to scream, I scream I allow myself to feel what I'm feeling and allow that to come to the surface and to get out and make more room. Mm hmm.

Jen:

The other thing that has been so interesting to me on this journey, which I never knew is that the capability of holding more than one emotion at once and not allowing the more strong or negative one to then dictate what, how I described the day, if that makes sense.

Lori:

yes,

Jen:

And that's been really, that's like a, I still struggle with that, you know, because of course I don't want any terrible bad things happen during a day, but that I don't just, like you're saying it's perspective, I don't just have to focus on that. It doesn't have to define my day. If Jules has a crying spell for nine hours, it doesn't have to define that day. That there were other moments that the one just lasted a long time

Lori:

yeah,

Jen:

But they were other moments that we can choose and maybe that's where that happiness choice comes in that it's not toxic Positivity. It's just how you reframe or reshape

Lori:

I'm going back to gratitude, right? mean, putting that into, into the practice, and how far has Jules come now, Jen? she's an amazing baker. She loves to cook.

Jen:

I you know, I think she has not come as far as we thought if that makes sense meaning Everyone thought that she would talk, right, we, at nine months old, I have this video of her babbling, and I'm saying to Jason, Oh my God, she's gonna be an early talker. Um, and, you know, so, but she always surprises us. And again, it's one of those things like, it's the, anticipation, like, we think we know what's going to happen, or, We think we're, you know, we're psychic and we can see the future. And I will just say with Jules that I cannot, I don't know. I think it's funny. I always say the sky's the limit. And then another woman in our group always goes, why would you put that limitation on her? Like the sky's not the limit, you know? Um, And which is so lovely. She's yeah, but um, uh jewels Has a splinter skill as they would call them right because she can't do math like a 15 year old and and things like that But she is this amazing chef. She has the knife skills of a michelin star sushi chef She does have some words that have come Um, I think it was when it was 11 or 12 when she started to call me mom, um, which I never thought, right. I mean, and probably most people, obviously when you're 11 or 12, you take for granted that your child even calls you mom, you know,

Lori:

You're like, Oh, there's my name again. it is. Yes. Yeah. Again,

Jen:

mama, mommy,

Lori:

yes. Perspective, right? Perspective.

Jen:

For sure. So, um, what we've learned about Jules is just to try to watch it unfold and not guess and try to provide. all the opportunity possible. So when she gets to that moment where maybe her body is ready, her brain is ready, or whatever it is that she has the resources to pull on to be successful.

Lori:

Yeah. That's beautiful. And that's the other thing too. It's perspective. And also letting go of our own expectations. I think that's a big piece, too, that we, again, okay, this is, this is the path I need to take because of. whatever society has put on me and so on and so forth. And it's, I mean, that's been a lot of my soul searching too. And I've said this to you the other day, Didi, where it's like, I've, I've done a full 180, and a lot of this stuff is looking inward and she doesn't want to go to school today. We're going to not go to school today. We're going to honor where she is and what she needs and not make this about me and being worried, is the school going to call me. Um, you know, but we're not quitters. We are hard workers. We, you know, we can find grit, we can bear down, we can do this. We can do that, you know, work harder. Like whatever it might be, it might be your story that you're pulling forward from your past. And, you know, I've had to definitely look in the mirror and when those emotions bubble up, whose are they? Are they more mine? Are they more hers? And then how do I choose to navigate, the day in all of that? Um, yeah, Oh, totally. When Jen, when you said, when you started, we started this podcast, you said, I'd be an a hole if I didn't have the kids that I have or something like that. And I just got full body chills.

Dorothy:

I did too.

Lori:

could tell, I saw it in your

Dorothy:

did too. when you were kind of alluding to how they've changed you in positive ways and have just changed completely changed you as a person. Um, and yeah, I mean, I think that. That so resonates with me as hard as this is. Um, like you're saying, Laurie, I've had to just. put aside or work on all those stories that are in my head that just aren't true. What's in my head a lot with my child is hurry up, hurry up, hurry up. We got to go. We got to get going now. We're going to be late. Go, go, go, go, go, go, go. We're on this timeline. And I can hear my mom in my head going, we're going to be late for church. Let's get in the car. Hurry up, hurry up, hurry up. And My kid doesn't work that way. Most people don't work that way. Um, and if we're going to start, I mean, I'm homeschooling right now because I've gone down the. Public school, private school, therapeutic school, quote, failure. Um, school failed him, he didn't feel school. And just pulled him, decided to homeschool, and now it's all child led, and it's interest based, and we are, I, I am learning every day give him what he needs, not what I think he needs. And that's hard. But wow, have I grown. I have grown more in the last eight years, and so has he. so has he, since you made that decision. Mm hmm. I'm just talking as a parent in general. I think I've just, yeah, we, I, I'm a different person now, for the better. Um, and I am lucky that he is in my life and has taught me, I really think, so much more than I've taught him. Seriously. isn't that the

Lori:

my god. That is the truth. I know. Oh my gosh, but Jen, thank you for coming on and sharing with us today and again, I this too is the stuff that fills me up. And, just Again, knowing that you're not alone, knowing that there's resources out there and, um, in terms of what I'm going to be putting in stuff into the show notes, Jen, can you share some, information with us about, again, if people want to look at the, your foundation and then also, who would you recommend for genetic testing if somebody wants to look down that path?

Jen:

Absolutely. Yeah, absolutely. Actually there's free genetic testing that's available to people.

Dorothy:

Ooh.

Jen:

So yeah, I would be happy to share, all of that.

Lori:

Great. Thank you. I'll make sure I'll put all that stuff in the show notes. Any final thoughts, my amazing ladies? I don't think so. I think I've said it all. I know this was a Mm hmm. Yummy. My heart is full. My heart is full, but thank you, Jen, as always. And, um, yes, thank you. Well, and you too, Didi, both of you continue to be, you know, my teachers and my support, so. dead outlaw. Yes. Well, everyone who's listening thank you remember, you're not alone. No woman should worry alone and yeah, continue to find your tribe, find your people, um, and honestly stick with the cliche, follow your guts, right? Look for your North star, like Jen said, and it will not steer you wrong and take care of yourself in that process. Because when we could get rid of the noise, that's mainly when a lot of the stuff is revealed to us. So.

Jen:

Maybe go out, you know, like when we used to do Book Fair when we were a kid and go out there and buy yourself the little poster to put in your office or in your, bathroom with a cat and it says, hang in there, you know, like just fill up on all the cliches

Lori:

That's great, Jen. That Oh, I had one. had one of those sometime my life. Good one, Jen. Good I know. No, that's a great one because when you did say the book fair, I was like, Oh my God, I remember walking into the library or the little truck that they had, right? There was like a smell to it and had your money to buy, your poster or whatever it was that, yeah. Yeah, let's, let's all go and, buy ourselves a, a poster or something to hang up on those Love it. All right, ladies. Thank you. And until next time everybody, remember, let's get curious. Bye!

The information shared on this podcast is for informational purposes only and is based on the opinions and experience of Lori Dorothy and their guests. The content should not be used as a substitute for professional medical advice. Diagnosis or a treatment. Always seek the advice of your healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you heard on this podcast