I Don't Know How You Do It

How to Adjust, Adapt, and Pivot, with Rare Mama Claire Audibert

August 15, 2023 Jessica Fein Season 1 Episode 30
How to Adjust, Adapt, and Pivot, with Rare Mama Claire Audibert
I Don't Know How You Do It
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I Don't Know How You Do It
How to Adjust, Adapt, and Pivot, with Rare Mama Claire Audibert
Aug 15, 2023 Season 1 Episode 30
Jessica Fein

Being a working parent is challenging under "conventional" circumstances. Amp that about by about a billion when you're a working mom of two young children, one of whom has a rare and life-threatening illness.

Meet today's guest, Claire Audibert, who shines in her demanding role at Google while balancing family life with her two sons, Elliot and Oscar. Living in Normandy and working from Paris a few days a week, Claire has a profound understanding and commitment to navigating the challenges of managing work, home, and special needs in a family. Accepting and embracing the changing reality is just one way Claire succeeds at home and at work.

Believe what you know. Trust your instincts. When something feels wrong, it usually is. - Claire Audibert

In this episode, you'll learn

  • What it means to live with intention.
  • Why the mantra "adjust, adapt, pivot," can be a saving grace.
  • How to honor your parental intuition and champion for your family's needs.
  • Why filling your own cup changes things for you and for those who depend on you.
  • What you need to do before you can find your tribe.
  • And much more...

Learn more about Claire:
Claire's Book 

Rate, Review, & Follow on Apple Podcasts

"This is my go-to podcast for inspiration and to discover new approaches to embrace the challenges in my life." If that sounds like you, please consider rating and reviewing my show! This helps me reach more people -- just like you -- find strategies and insights to do the things that feel undoable. Click here, scroll to the bottom, tap to rate with five stars, and select “Write a Review.” Then be sure to let me know what you loved most about the episode!

Also, if you haven’t done so already, follow the podcast. Follow now!

Sign up for my newsletter and learn more about these remarkable stories at www.jessicafeinstories.com

Order Jessica's memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes

Music credit: Limitless by Bells

Show Notes Transcript

Being a working parent is challenging under "conventional" circumstances. Amp that about by about a billion when you're a working mom of two young children, one of whom has a rare and life-threatening illness.

Meet today's guest, Claire Audibert, who shines in her demanding role at Google while balancing family life with her two sons, Elliot and Oscar. Living in Normandy and working from Paris a few days a week, Claire has a profound understanding and commitment to navigating the challenges of managing work, home, and special needs in a family. Accepting and embracing the changing reality is just one way Claire succeeds at home and at work.

Believe what you know. Trust your instincts. When something feels wrong, it usually is. - Claire Audibert

In this episode, you'll learn

  • What it means to live with intention.
  • Why the mantra "adjust, adapt, pivot," can be a saving grace.
  • How to honor your parental intuition and champion for your family's needs.
  • Why filling your own cup changes things for you and for those who depend on you.
  • What you need to do before you can find your tribe.
  • And much more...

Learn more about Claire:
Claire's Book 

Rate, Review, & Follow on Apple Podcasts

"This is my go-to podcast for inspiration and to discover new approaches to embrace the challenges in my life." If that sounds like you, please consider rating and reviewing my show! This helps me reach more people -- just like you -- find strategies and insights to do the things that feel undoable. Click here, scroll to the bottom, tap to rate with five stars, and select “Write a Review.” Then be sure to let me know what you loved most about the episode!

Also, if you haven’t done so already, follow the podcast. Follow now!

Sign up for my newsletter and learn more about these remarkable stories at www.jessicafeinstories.com

Order Jessica's memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes

Music credit: Limitless by Bells


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. 

My guest today, Claire Audibert, is a working mother of two boys. Her eldest, Elliot, is eight years old and suffers from a rare and catastrophic form of genetic epilepsy. called KCNQ2. With KCNQ2, seizures usually start within the first few hours of life, and the condition is frequently associated with a wide range of physical and mental disabilities, [00:01:00] ADHD, ASD, sleep issues, and feeding disorders.

Claire's family has been on an unusual journey, literally and figuratively, since the boys were born. They lived in Australia with no family support until 2020 and then decided to move back home to France just as COVID was starting. Now, Claire works at Google, living at home in Normandy for half the week, and working in Paris for the other half.

She shares her journey in her book, The Letter E, which was published last year. Claire and I spoke about how mothering Elliot has made her more effective in the workplace, and how working has helped her succeed back at home. It is a complex life for sure. But Claire and her husband Cedric have created mechanisms and mantras to make it all work.

It is my pleasure to introduce you to Claire Audibert. Welcome Claire. Thank you so much for joining us today. 

Claire Audibert: Thank you so much for having me.

Jessica Fein: Let's begin by hearing a [00:02:00] little bit about your family. 

Claire Audibert: Yeah, of course. So, first of all, thank you so much and I am so excited to have this conversation with you today.

To introduce my family, I'm a mom to two beautiful boys, age 8 and 6. Elliot is our oldest and Oscar is the youngest. We are a French Australian family. We now live in the French countryside in Normandy after spending over a decade in Sydney. I'm married to the wonderful Cedric. We live here with our cat, Pixel, and three chickens.

Jessica Fein: I kind of feel like I should just be quiet and let you speak for the next 30 or 40 minutes because your voice is so lovely. Tell us a little bit about Elliot. 

Claire Audibert: Elliot was born in June 2015. We were living in Sydney at the time, had the most normal pregnancy, very healthy. I was very active during the pregnancy.

We had no reason to be worried during it, but he was born and started having seizures [00:03:00] in the delivery room. At first we didn't know that those were seizures, but he was sent to NICU probably within 12 hours of being born, because we were wondering what those odd movements were. It took a little bit of time to diagnose.

It took a good couple of weeks for us to be able to go back home. Fast forward, just to introduce him and we'll go back, you know, into the detail, but fast forward, Elliot has a genetic mutation that is called KCNQ2. It's the name of the gene. It's a de novo mutation, which means that Cedric and I aren't carriers and it's not inherited.

It's just unfortunately something that happened with Elliot. And KCNQ2 is a rare and catastrophic form of genetic epilepsy where seizures commonly start within a few hours or days of life and very often is associated with mild to severe mental and physical disability. Autism syndrome and ADHD and very often [00:04:00] feeding issues and very poor sleep patterns as well.

Jessica Fein: Thank you for sharing all of that with us. And before we get into the details of your story, I was so intrigued by the way in your book you chose to tell your story because you alternate between your perspective and Elliot's perspective. And I've never seen that done before. It was so interesting because you start on the day he's born.

We're hearing his voice, if you will. And I just found that fascinating. What made you decide to approach the writing that way? 

Claire Audibert: Oh, thank you. It's not something that I had started with. I was debating whether to write it in my voice or Elliot's voice. The reason why I wanted to write it in Elliot's voice is because I wanted to share the journey and I wanted to share his journey but convey some hope as well. So I wanted to give that perspective. Initially, I thought that writing it from my perspective would be way too dark. Because those first few years of his life were really, really difficult. And that's what I wanted to portray in the book as well. But I wanted to get the right [00:05:00] balance.

I figured that doing the two voices was the right balance. And so what it enabled me to do was to actually go as deep as I needed to in my voice and actually share all the trouble and the fears and everything that, you know, went. With that, but also with the voice of Elliot, the first few years of his life were very difficult emotionally for us, but he was such a happy baby, and it was challenging to go to medical appointments and to, you know, have to manage seizures and such, but he was such a happy boy.

And I wanted this to show through the words as well. And so that allowed me to have that kind of right balance between the two. 

Jessica Fein: Well, I loved it so much and it struck me because one of the things that I often think about and thought about in raising my daughter Dalia was this idea of, you know, there's so much heaviness surrounding these diagnoses and the medical complexities and all of the challenges.

And the kids just want to be kids. [00:06:00] Yes. And I felt that when I was reading from Elliot's perspective, and you just said that you wanted to convey a sense of hope. I have to note that Elliot's middle name is Hope. It is. Yes. It seemed like you and Cedric had chosen the name Elliot way before, but that you chose the middle name once you understood what was happening.

Is that right? 

Claire Audibert: That's right. And sorry, thinking back, I'm actually getting a bit emotional that we had decided on the name Elliot. When I was pregnant, we both just fell in love with it, but we were debating what this middle name might be. And we were debating between, you know, grandparents name and other more common middle names.

On day three, probably like the first week we were so lost. Elliot was in NICU. At that time, we had no idea what was going on. All the anti epileptic medication, none of them was working. He was having 20 seizures a day. And we were somehow surviving and, you know, having a coffee in the in the hospital cafeteria and [00:07:00] Cedric said, I think the middle name should be hope and obviously we agreed that that was, you know, the best middle name for him.

So that's why it's Elliot Hope. And funnily enough, Oscar's middle name is Hugo, as per the neurologist who helped Elliot and actually found what was going on. 

Jessica Fein: Well, let's go back then to Hugo and to those early days, because it seems, you know, we talk about a diagnostic odyssey, and boy, it seems like you were on a real odyssey.

They came up with this hypothesis that maybe this is what it was, but then they said it wasn't what it was. And there was just so much back and forth. Talk about a roller coaster. 

Claire Audibert: It was, it really was. The first two weeks they had literally no idea what was going on. I mean, I remember those days vividly because For anyone who has had a child, you know how difficult those first few days are.

You don't know which way is up. It feels like your body is broken. And add on top of this, all of the challenges of being thrown into the NICU world and not knowing what's going on. At some [00:08:00] point, the doctor sat us down and said, you know, you might have to go back home with a baby that has 20 seizures a day and you might have to manage this.

And I'm grateful for Hugo and him being really humble as well, because one day he said, I just can't figure it. Like, I don't know, I don't know what's going on. So I'm going to ask a few of my colleagues. And so he actually brought other doctors and other neurologists from his team over and had a good chat and reviewed all the charts together.

And one of them said, Do you remember this conference we went to last year? Do you think it might be this condition we heard about? So they tried one of the medicine that works really well with Casey and Q2. And fortunately, Elliot was seizure free within a few hours. He still has seizures to this day, but this medication works really well in controlling the seizures.

So they suspected it and put him on the right medication very early on. So when, as you pointed out, when we did the proper test and, you know, had the blood test and send the [00:09:00] blood away for it to be tested, and it came back negative for KCNQ2. It's only when I got pregnant with Oscar, which wasn't planned, that we called the genetics team and said, I'm pregnant again, do we need to run more tests?

And they rerun the test and turns out it was KCNQ2 and it was a lab error the first time.

Jessica Fein: It's so interesting because you talk about instincts in your book and you talk about at the beginning of this journey, you can't trust your own instincts. And I think that's something for new mothers anyway, right?

It's like, I don't know what I'm doing. Can I trust myself? But you kind of feel like, well, this is a very natural thing and I'm just going to learn to trust my instincts. You write, you couldn't trust your instincts. You were in the dark about what was happening. As were the medical professionals. But over the course of the book, you really start, I should say, over the course of your journey, as told in your book, you really, not only start to trust your own instincts, but even when your instincts are telling you something different [00:10:00] than the medical professionals are saying, you become so sure in yourself and in your knowledge of Elliot, that you are able to stand up, and in fact, There were some really tough moments when, had you not trusted your instincts, it could have been a different kind of outcome.

How did that transformation happen? 

Claire Audibert: Yeah. And that is such a good point. The book covers the first two and a half years of Elliot’s life. And I think that has become truer and truer as he gets older. He's eight now. And trusting your instinct is, is probably one of the key lessons I've learned since he's been born.

I heard a quote not too long ago, uh, on a podcast and someone said, believe what you know. And that just rings so true because I think a lot of the time it's perhaps like a lack of self confidence or you don't trust your instincts. And. When you think back, you know, you know, there's lots of things where it just doesn't feel right in your body.

And I think those are the examples that you've got in [00:11:00] the book that we've had so many times since that just when you feel something's wrong, it usually is. That being said, we've had experiences in, you know, multiple countries because we've lived the first five years of Elliot’s life in Australia. And now we're in France.

And the way that you're listened to is very different in the two countries. And I'm actually really grateful for the Australian medical teams because they do listen to parents a lot, and especially mums. Elliot is at risk of having seizures when you have a fever. And I remember very early on, one of the doctors, we came into hospital and I said, I thought he was hot, but I'm not sure.

The thermometer said he wasn't, but I kind of felt like it was off. And she said, always trust yourself because you kiss that forehead more than a hundred times a day. If it feels hot, it's hot. That stuck with me, like even to this day, like if he feels hot to the touch of my lips, I know he's hot. 

Jessica Fein: You know, it's such a transformation that we hear about with rare disease parents [00:12:00] because of course, as new parents in particular, and then I think all through our lives, we rely on the doctors to know more than we do.

But what you just explained is that it took a group of doctors and then they were saying, well, maybe we were at this conference, we heard of this thing, and you're relying on that, but then. Before long, you become the expert, right? You're expert in Elliot. Nobody knows more about Elliot than you.

Claire Audibert: Yeah, that's very true.

And I think, especially for those rare conditions, I mean, KCNQ2, the gene was discovered about a decade ago by a researcher in Australia, actually. So Ingrid Scheffer discovered the gene. She's the one who spoke at that conference, and I got the privilege and honor to meet her later on and actually tell her the story of how, you know, the doctors figured out that it.

It probably was KCNQ2, thanks to her raising awareness and speaking at conferences. But I think you're right, like we become the expert. I mean, for better or worse, you know, when we have to go to hospital [00:13:00] now, you know, whether it's an emergency or not, the doctors listen to you more because, you know, what you deal with on a daily basis is just, it’s next level. We come in and we know the right dosage for the medication. We know everything about him. We know, you know, the dates of the last seizures, appointments, you name it. And it's huge in terms of that mental availability and what has to go to this, but I think it's necessary. And you become. the expert, but you also become their strongest advocate.

Jessica Fein: Absolutely. And that's important too, because you need to have an assurance about you and a conviction and confidence that maybe even is a little bit different from parents in more conventional circumstances, if you will. And one of the things that you talk about is you join this new moms group and you want to meet other people, but to a certain degree, it's even more isolating because your situation is different.

I think it was so interesting how you put it. What you said was, [00:14:00] your journey doesn't look like the others, right, in the group. And you said, “KCNQ2 affects everything and everyone in the family. Every little aspect of life. It affects work. It affects where we might choose to live, what we do on weekends, what we eat, how much sleep we get, where and when we might go on holidays, how and what we share with our friends and families, our finances, our own health.”

And that's what it's like. That just really summed it up. There's no aspect of life that isn't impacted. So how did you find your tribe? How did you find the people who could relate to you in this new reality? 

Claire Audibert: I think that is such an interesting and important point. Maybe let me start by saying it took me a long time.

First, because I was so lost at the beginning, and I just didn't want to accept it. Uh, for me, finding my tribe and reaching out to people who might be living, you know, a similar [00:15:00] situation, was accepting that Elliot would be different all of his life. And I think it took me a very long time to accept that that was the case.

For a very long time, I keep praying, hoping, begging for a miracle. And the miracle would be, let's just get back on track and, you know, everything will just be a bad memory, which obviously, you know, it isn't, but it's a different reality. And you know, it's a different form of normality, but it took me a long time to actually reach out to the right people.

But finding my tribe, so a lot of it was through accepting it and, you know, saying it out loud and saying, you know, we might need help or, you know, what I need is different from what, you know, others need. Uh, the mom's group is an interesting one because turns out some of my best friends and strongest support around Elliot are probably from that mom's group.

The group of women that I met through mom's group love Elliot so much and I think the best [00:16:00] quality that they've displayed is that they treat him like any other of the kids. And then I reached out to the KCNQT Foundation, and it was probably about one and a half. It took me that long to actually reach out and say, we're part of the community.

And, you know, we want to say hello. 

Jessica Fein: How did you get there? How did you come to accept it? Because I told you, totally understand and relate to, well, if I just pray hard enough, if I just wish hard enough, if I just, you know, close my eyes and put my hands over my ears, if I beg my mom enough and say, mom, why is this happening?

How did you get from there to accepting? 

Claire Audibert: Well, it took a long time. And if I'm completely honest, it is an ongoing journey. I think there are some days where it's still really hard. And some days where I see him for who he is, who is this amazing, fabulous little person who's funny and full of love. And it's finding that balance between the two, between pushing for normality, because that is what keeps us going as well.

And that is what keeps us [00:17:00] traveling, working, exercising, doing all the things that we love and loved to do before he was born and still love to do as a family. And also accepting. That it's a journey to accept it. Like, if that makes sense, like actually being kind to myself and allowing myself to feel the sadness and the grief.

And cause I think for a very long time, I kind of bottled all of that down as well. And I was like, no, I'm not grieving. Cause it's not an issue. And it took a long time to accept that that's what grief can look like. And that's what trauma looks like. So, as I said, you know, we've got two little boys and Oscar doesn't have any health issues.

And that has been a huge part of that acceptance journey as well. Balancing his needs with Elliot's needs makes it incredibly challenging, but it also gives me a glimpse into what other families might be living. 

Jessica Fein: What was it like for you when the younger child started developing ahead of the older child?

Claire Audibert: Incredibly difficult, I'm not gonna lie. And there's still [00:18:00] some Especially milestones that I found really, really difficult. I found this year really, really challenging because it's the year Oscar turned six. He's just learned to read. He's more independent. He's participating in extracurricular activities, things that Elliot probably will never have access to.

And I found that really, really difficult. There's no words. because it's challenging to see your eldest, you know, do everything that they can. Elliot tries as hard as he can, and for Oscar, a lot of it is just effortless. That being said, we're always very, very open, and... It's been an ongoing discussion within the family, like sometimes Oscar sees that he can do things and his brother can't.

And so we have those discussions as well of like, well, you know, that's because Elliot has KCNQ2, he will get to do other great things in his life that are different from you. And so raising both boys this way has been something that we've been doing from the [00:19:00] beginning and being very open about their eldest condition and having that open dialogue within the family.

Jessica Fein: One of the other things that you write that I thought was so interesting is that even in this new reality that you're experiencing, where this has changed every single thing about your life and Cedric's life, at some point you realize this really isn't about you. And I found that so interesting because it is your whole life has changed, but you said, “Up until this point, we've thought a lot about how we're going to manage how it's affecting our lives, our hopes and dreams for the future. We've been acting like this is about us. The truth is that Elliot is the one living with the condition. And we need to be strong for him and give him everything he needs to grow up, to be independent, stand up for himself and be whoever he needs to be.” 

I thought that was gorgeous. But how in the world do you do that?

Because it has affected everything about your life, but this is about [00:20:00] him. This is his journey. How do those two things live together? 

Claire Audibert: It's just an ongoing. journey. And I think if I can summarize, I think the mindset shift since having Elliot is that I think we're a lot more intentional with everything that we do.

And I think intentionality has been the key word. And so being intentional about it's his life and we're here to support him. Yes, of course, you know, my life's been impacted, you know, Cedric's life being impacted or family life as we dreamt it was impacted. But at the end of the day, there's still a lot that we can do.

And there's still a lot that, you know, we can do with him as well and do as a family. And we needed to change our mindset to be able to realize this and do this because I think otherwise we would have limit ourselves as well and then limit his potential by thinking that it was us that were affected.

And it's also realizing that we're here to support him. And the best that we can do as parents is really [00:21:00] arm him and help him adjust and adapt as best as he can to the world because we have to be honest, you know, the world is not built for our kids yet. Hopefully it will be one day and same for Oscar.

I think that the most difficult conversations we've had in the past, you know, a few months have been when he comes back from school and it doesn't happen too often, but he comes back from school or the playground or something and says, you know, someone made fun of Elliot that happened not too long ago.

And he was like, Oh, such and such made fun of Elliot because he has a disability teaching him how to respond. And my response was what, well. What did you say? And so he said, that's not nice to make fun of of Elliot. And I said, that's a great response. How did that make you feel? And he said, well, I felt better, but I was still a bit angry.

I'm like, you know, what else would you say, you know, next time that was a great response. What else would you say? And really to help him have that assertive attitude as well to say, it's not nice to say [00:22:00] this. He's my brother. I love him. And he's just the best that he can be. That's the shift between thinking it's all about us to actually helping them and realizing that everyone's life is affected differently.

Jessica Fein: I think that the siblings of these children are so heroic and grow up being so much more empathic and I think they're the ones who are really going to lead the way in changing the world. 

Claire Audibert: I agree. Yes. So much. Oscar is an amazing little boy. They both are. But it's crazy how somehow that sibling dynamics, like he manages to push Elliot's button and push him to go further and do more.

And at the same time, there's so much love between them. You can see, like, he only wants what's good for him. He's learned to read, and so now he's trying to teach Elliot to read. So he's like, what's this letter? And what's this letter? So it's very cute.

Jessica Fein: Your mantra is adapt, adjust, pivot. How does that guide you? 

Claire Audibert: I [00:23:00] think that's the realization that, and I'm, I'm very organized, you know, by nature and I like when things are in order and I like planning and I like to do lists. 

Jessica Fein: That sounds very, very familiar to me. 

Claire Audibert: Yeah, but that is not. helpful. That is not a good quality to have when you have a child that has a medical condition as serious as KCNQ2.

And so having that mantra of adjusting, adapting, and pivoting has really helped because it makes it more normal to change and to actually realize that you need to pivot, you know, really quickly. We don't go out anymore without having a plan B and knowing that who's going to look after early addicts.

You know, he gets overwhelmed in a situation who gets to take it home or outside for a walk or something. We might have a plan to go out on a Saturday, for example, but if something happened and he gets overwhelmed, you know, we already know how we're going to adapt, how we're going to adjust that plan and how we're going to pivot if we need to, as an example.

Jessica Fein: [00:24:00] Has that spilled over into other aspects of your life, that mantra? 

Claire Audibert: Yeah, everything, literally everything, even at work. And that's been really helpful, actually. 

Jessica Fein: Well, let's talk about your work because you are and were a career woman. So first of all, tell us about what it is that you do professionally.

Claire Audibert: Yeah. So I'm a global account executive at Google and I look after our largest advertisers in the automotive industry. 

Jessica Fein: And so you had to make a decision, right? Are you going to go back to work? I mean, it seems like you had always assumed you would go back to work. And then you had to figure out, with this new reality we're living in, am I going to go back to work?

So tell us about that decision and where you landed. 

Claire Audibert: I think it was a discussion we had very, very early on when Elliot was sent to NICU and it was very obvious that our lives were going to be changed forever. We had a very serious and deep discussion with my husband about like [00:25:00] multiple scenarios and what might happen if, you know, those were to eventuate and what we wanted for our lives going forward.

And so one of the things that I wanted was to keep working. So I went back to work when Elliot was about nine months old. I took nine months maternity leave and my husband actually took a paternity leave. So he took six months off so I could go back to work. He could look after Elliot, which is amazing in terms of making sure that men and women have responsibility, like actually carrying responsibilities.

And that actually allowed me to go back. Knowing that he was in safe hands and, you know, like Cedric would look after all the medical appointments and all of that. So it made my return to work a lot easier. I was a consultant at the time, so it's long hours, but my team was amazing and very flexible. So I was able often to kind of, you know, leave at a decent time and then actually log back on later at night when I was in bed and that worked for me for a very long time.[00:26:00] 

And then I changed about three years ago, changed companies. And so I had to reinstall, you know, like a new routine and everything. And I just started a new role about a year ago, actually, where I work from home two days a week and I work in Paris three days a week. So I'm actually away from home three days a week.

And my husband looks after the boys those three days. It is a big shift and it is a big commitment. But it's a big commitment to myself and to our family as well. 

Jessica Fein: How does that arrangement and how does your job make you, I don't want to say better, but change things for you in terms of the way you mother when you're home?

Claire Audibert: It does like undeniably, I think because it gives me a different sense of purpose and it helps me do something that I love. It makes me a better mom because my cup is full or fuller. It's already quite full, but 

Jessica Fein: I think your cup is overflowing, but okay, 

Claire Audibert: you know, [00:27:00] different, different expression, but yeah, it just allows me to, and to stretch, you know, like my mind in different ways as well.

It makes things a lot more challenging logistically. Like I'm not going to lie. It, it does take a lot of effort logistically from an energy perspective. Elliot still has sleep issues. It doesn't sleep very well. it's also challenging. Cedric works full time as well, but that means that we can both feel like we're expressing ourselves in different way and actually realizing what we want to do and not just be Elliot and Oscar's parents.

Jessica Fein: I admire that so much because I think that there is a tendency or an inclination or it's just easy in certain ways to have your world become so much smaller and have it really just be solely about this high stakes parenting. And so to recognize that there are other things that fill your cup and to have the courage to go do [00:28:00] that is really, really admirable.

So we talked about when you go home after having been at work, how that impacts you. What about how your home life makes you different in the workplace? 

Claire Audibert: I think it makes me a lot more efficient, and so I'm a lot better at, you know, prioritizing, at making, you know, decisions on the spot, thinking on my feet, a lot of those good qualities that you immediately gain as a medically complex parent.

But I think it, and it's going to sound weird, but similarly, you know, we've gone back to um, exercising a little bit more this year, which is something that for a number of years we weren't able to prioritize because you can't do everything. But I think being at work being able to exercise, you know, writing the book when I was You actually realize the privilege that it is, I think, when you've got a child that has very high needs like Elliot and to this day, I mean, Elliot is very high needs.

He's got, [00:29:00] you know, he's got ADHD and ASD. And that is probably even harder to manage on a daily basis than the seizures because. You know, you live with that every day. And so being able to go to work and focus on this, being able to go for a run, you just realize the privilege that it is.

Jessica Fein: It's very interesting to me that the ADHD and the autism are more challenging on a day to day basis than the medical challenges.

Can you share a little bit about that? 

Claire Audibert: I think we're lucky that Elliot's seizures, although he still has them, a lot of KCNQ2 kids have growth seizures, but Elliot still has them, but they're very infrequent, thankfully. So it is still a huge toll in terms of that mental availability, because you always have to think about having his medication, making sure that everyone who's looking after him knows how to react in case of a seizure, but it's not something that you have to deal with on a daily basis.

Whereas ADHD and autism, [00:30:00] especially how it presents with Elliot is something that you have to deal not on a daily basis on a minute by minute basis, you know, there's a saying that says if you meet a person with autism, you meet a person with autism because everyone is different. Elliot has trouble with social interactions.

But with the ADHD, he's like, he can't sit still, like he's always moving and he's always requiring attention. So you can't just sit down and, you know, have a coffee, for example, like he'll be in your face asking for attention, except because of the lack of focus. He's having trouble actually focusing for a long time, not even like five minutes.

So it's constant supervision and it's constant attention and that is, that is tiring because you add this to, you know, poor sleep and to, to all the stress and everything. So that is harder to manage than seizures.

Jessica Fein: I think it's surprising to a lot of people when they find out that some of these other kinds of challenges, which are much, much, much more common, [00:31:00] are in fact more stressful on a day to day basis than these hugely rare and high stakes living on the precipice kind of medical challenges.

Claire Audibert: Yeah, the combination is exhausting.

Jessica Fein: I, of course, was particularly struck by the piece where you write, A lot of people sometimes hurt us with their comments without realizing it. They say things like, I don't know how you do it. Why do you find this comment hurtful? 

Claire Audibert: And I know and I acknowledge and recognize that it always comes from a good place.

But I don't know how you do it in that those instances when it was said, you could never be sure whether it was people being thankful that it was you doing it and not them. And that happens a lot in like the attitude and how you receive it, at least, or the sheer, I've got no idea how you do it. And I do not want to, you know, imagine what it could be.

And I think the only response in that those cases was, well, I don't have a choice. I think there was always an implication that, you know, it's something that you do. [00:32:00] Like, I don't know how you manage it all and I don't know how you do it, but you don't have a choice when it's your child. You do whatever you can to make sure that they're safe and they're as healthy as they can be and you help them as much as you can and you just love them because they're amazing.

I don't know how you do it in those instances. Yeah, I usually found that quite hurtful and very often. When I heard this, it was at times where you really don't want to hear this. It was kind of like after a night in a hospital. So when he was six months old, he had a status epilepticus, which is actually a life threatening condition where you're, you have a seizure, like seizure after seizure and your body just can't recover.

And we heard this after that episode. Well, this is the most vulnerable, the most tired, the most stressed I've ever been in my life telling me, I don't know how you do it. 

Jessica Fein: Also, what it does is it kind of shuts down the conversation because the person's not actually wanting to know how you do it. As you say, it comes from a place of kindness and it comes from a place of, [00:33:00] you know, wanting to recognize what you're going through.

But I also found it just tough to respond to, like, what do you say to that? You know, I don't know either. What choice do I have? It's not so bad. It is worse. I don't know. It's a hard thing to know how to respond to.

Claire Audibert: Yeah, I agree. A hundred percent. 

Jessica Fein: But here you are, these years later, and you are living an incredibly full life.

You are loving on and raising two children, you are working, you are commuting several days a week in Paris, you're exercising. I would love to close by hearing, what are the top three things that help you do what once looked and felt undoable to you? 

Claire Audibert: Yeah, that is such a great question. I'm actually going to give you four.

Jessica Fein: Excellent. A bonus one.

Claire Audibert: I think the main thing, and we, we've talked about it is finding that mantra of adjust, adapt and pivot and allowing ourselves to [00:34:00] lean into that and lean into the, it's okay if it doesn't go according to plan. That's the first one that I think was really helpful.

Finding something that works that allows us to shift if we need to. Because if Elliot's needs change, then we can actually pivot. The second one is really working as a team. So within our family, like our little family unit of four, but within our extended family, but that works with all the therapists, with the nannies, we really work as a team.

And that is something that we feel very, very strongly about. And even with Oscar, like, very often we'll have the conversation around we're a team and we work together. It's funny because lately, I think because, you know, he's six, so he's starting to test and be like, but why are the parents deciding? And, you know, why?

You know, like, those little, like, power play. We keep having that conversation of, we don't do this in our family. Like, sometimes mom and dad will have to make a decision because that's our role. [00:35:00] But we work together. We're together as a family, and we're a team. And that is something that has helped us do the things that felt undoable at some point.

The third one, I would encourage anyone who needs it, has been therapy and coaching. Those feelings of acceptance and growth and change of mindset have not happened on their own. I've had professional help and that was necessary and that looked differently, you know, across like different phases. But yeah, I think coaching a therapy really helped and the bonus, which worked for me has been moving my body, which I think I lost sight of for a little while because of COVID because life is really busy.

And finding this again, I've realized the importance of it for me. 

Jessica Fein: Well, I love that and I love having the bonus and it's inspiring. It makes, makes me want to go off right now and go on a walk and move and experience that because I do think that having that time away and as you put it, doing those things that are really filling our own [00:36:00] individual cup and remembering who we were, who we are and who we want to be is so important.

Claire Audibert: So important.

Jessica Fein: Claire, thank you so much for sharing your story with us and for writing the book, and I'm just really honored to know you. 

Claire Audibert: Oh, thank you. Thank you so much for having me. Like, it has been an honor to be able to speak with you, and I'm really grateful. Thank you so much. 

Jessica Fein: Here are my takeaways from the conversation with Claire.

Number one, believe what you know. Trust your instincts. The person with the most degrees on the wall doesn't always know the most. Number two, adjust, adapt, pivot is a useful mantra and mindset shift, particularly for those of us who like to plan, organize, and control. Number three. When your own cup is full, you have so much more to give to everyone else.

Number four, taking care of yourself and your own needs, whatever that looks like, for Claret it’s exercise, is a privilege and it's important. And number five, build your team, whatever that looks like for you. Thanks so much for being with me on this journey. [00:37:00] If you have guests you want me to interview, reach out to me through my website jessicafeinstories.com. F like Frank, e i n, or find me on Instagram @feinjessica. Thanks so much. Talk to you next time.