Hi. This is Laura Vandercamp. I'm a mother of five, an author, journalist, and speaker. And this is Sarah Hart Hunger. I'm a mother of three, a practicing physician and blogger. On the side, we are two working parents who love our careers and our families. Welcome to best of both worlds. Here we talk about how real women manage work, family, and time for fun, from figuring out childcare to mapping out long term career goals. We want you to get the most out of life. Welcome to best of both worlds. This is Laura. This is episode two hundred and fifty eight, which is it airing in mid July of twenty twenty two. Sarah is going to be interviewing Elise Thompson, who's going to share some about her life, her career, parenting, lots of great tips. We love when our blog readers and listeners can be our guests as well, because one of our missions here is to share how people are managing their lives and managing to make work and life fit together. So lots of great advice from at least coming up in this one. But both of us, as Sarah and I are recording this in late June, or you're navigating some unexpected challenges in life. So Sarah, what happened with you guys recently? Our challenge is not that challenging in the grand scheme of things, and I think that that is my sort not to skip ahead. But I was going to like say, like, how do you like not panic or ste about things? And really like maintaining perspective and gratitude for me has always been what helps, because when I'm feel tempted to freak out about some plan not coming to fruition, it's usually not anything all that terrible. So the specific thing that went wrong though, is, yes, the specific thing is my husband's car. Like every single well which was my car, our old car, every single light just went on and I was swiss to take Genevieve on a trip and now you know, I don't have a car because he took mine. But it's fine, We're just going to uber he's going to get it fixed whatever it is it is, and it's just, yeah, one of those things. Where as annoying as it is to get that phone call, if I can immediately be like, okay, well that's actually a great phone call compared to the car accident that could have just happened, or you know, like I don't know a million other things that are worse, and the fact that things like uber exist and there are ways around this kind of a problem, it's like a very solvable problem. I think that tends to be my way out of the funk when I can, when I am successful. Yeah, well, we're dealing with unexpected some childcare issues that both people we would normally be having care for our kids are not here in July for some time, and so traveling together various backup things. Curiously, there's always a gap between having available backup care and being able to use it. So theoretically my husband has some number of days of emergency childcare through his work, but it turns out you have to like go through this whole registration process. It's only like one of the place's facilities that you can go to. It's just that, you know, there's always a gap between It's like, ooh, we have this benefit and making it happen. I'm sure we will be able to make it happen if we need it, but we shall see. We're also you know, talking to a few other backup fitters and such, but you know, and again, in the grand scheme of life, it's it's all fine. You know, I can't be fired from missing work. He won't be, so we'll make it work. But you know, would think one of the reasons you wanted to talk with Elise is that she's been very good about managing challenges as well. I wonder if you could just talk a little bit about that. Yes, yes, And the challenges that she manages are far beyond any of the little things that we just mentioned. And yet, so the reason I feel like I quote know Elise is because she's been a long time commenter on my blog, and so I get a sense of how the things she's gone through and how she's handled them. And she's always wowed me with her sense of perspective and the ability, you know, to see the beauty and the gifts and even difficult things. She has a special needs child and a big job, and there's been a really long and complicated medical journey that she's going to talk about. And you know that all of the little things we talk about like pale in comparison to this, and yet she still has ways that she coped, practical ways, more emotional ways, And I just really really love this interview. I hope you guys really enjoy it as well. All right, well, let's hear for Bealise. All right. I am so excited to welcome Alise Thompson on Best of Both Worlds. I feel like I know Elise through blog comments actually, and I know that sounds odd, but she is like a particularly insightful comment mentor and I always look forward to seeing what she has to say. And when in one comment she volunteered that she might be interested in being a guest, I was immediately like, Okay, I'm sending you a date. So Elise, thank you so much for coming on. Can you go ahead and introduce yourself and tell our listeners what you do? Sure? Sure. I am an attorney for the federal government. I've had my same job more or less. Well, I've worked in my same office more or less since I graduated from law school nine years ago. I became a supervisor in the office almost about two years ago now. And I am married to a public defender who also has very demanding work, and we have a three year old. We have one child, she turned three in March, and she is peque toddler. She is loud, and rambunctious and has lots of strong feelings and emotions, and she is very, very very active and is sort of always on ago. She is happy, has never met a stranger she would not hug. She also has a rare form of epilepsy called Dravae syndrome, which if you google it, they will say it is a rare and catastrophic form of epilepsy, both of which are true. It is a form of epilepsy that doesn't respond to medication generally, so even though she is on a number of medications, her seizures are not fully controlled, and the seizures are really just sort of the tip of the iceberg. It also comes with intellectual disabilities and some physical disabilities. And even though my daughter's she's probably on the milder side of the syndrome, she is very unlikely to ever be self supporting or to live independently. That's kind of the extra at this point. You know, you never know, but that's you know more or less what we are planning for sort of mentally and financially, and things like that. Wow, oh my gosh, you have so much on your plate. And you say that with such like positivity and almost like an air of neutrality, although I'm sure as you were going through it, it was like a lot tell me a little bit about if you're comfortable like earlier on as this was evolving. How I'm guessing when you went to have your first child, you didn't expect something like this, and you have this family with like two big jobs, and you had a picture of what that might look like. How has her diagnosis or how have things evolved? Like? How did that change your experience moving forward as a parent with an intense job. So I will say I think that I personally was very open minded I to what my child was going to be. Like, I have seven siblings. Go up. I have seven siblings and we're all completely totally different. So I went into parenting thinking it was a total wild card. You had no idea what you were going to get. I also fully expected that my kid was going to have health issues of some sort, although in my head I thought it was going to be like teenage depression or something. I was definitely not expecting. My daughter had her first seizure when she was five months old, which was a month after I went back to work, and she was at daycare, and I can tell you I was, you know, I got the call and I was like, oh, okay, there's something's going on. I should go home and things like that, and then they like sent me a video. They took a video of the seizure, and I was like, oh, my goodness, something is going on. And I had no idea what was happening. The day that very first seizure my daughter, my husband was actually working from home that day and he was able to Our daycare is very close to orehouse. He was able to drive over. He got there literally as the ambulance was pulling up, and you know, was able to go with her to the hospital. So, you know, the beginning was very scary without it, because you have no idea what's going on. And I think, you know when you I think the beginning stages of any diagnosis are very scary in large part because you're trying to reconcile, You're trying to learn what's going on. You're also trying to learn about the diagnosis. You're trying to sort of reconcile your expectations with what you with your reality. And you know, drave is not an easy diagnosis in the sense that like twenty percent of kids with drave don't live till adulthood, so, you know, for various reasons, but it is not It does change your perspective, but sometimes in really good ways. You know. I spend an hour reading to my daughter for her bed as part of her bedtime routine most of the time, and it is something that I find very joyful because it's something we both thoroughly enjoy doing, give or take the book selection, of course, but it is something that it's like, oh, I don't know if I'll get a lot of this, you know, And so it makes it a lot easier to sort of be very aware in the moment the good times and to not sort of wish time away. So I think that's been really a nice part of my parenting experience that I don't know that I would have appreciated, you know, if I felt like I was going to have decades upon decades upon decades with my kid. Wow. I get from your comments and from what you said now that you are very intentional with the time that you spend with her and like the focus on her, and that perspective is incredibly valuable. And yet at the same time, it is going to take a village. When you're dealing with a child that has different medical needs, and I know you've written a little bit about that in the past as well. How have you gone about crafting the right kind of support network for yourself, for her, for the family moving forward. That is a fascinating thing. First of all, I will tell you my husband in my our division of labor is probably not normal, because my husband definitely wanted a kid before I did, and was really pushing it for much longer. We had a somewhat classical setup in that I did a lot of the mental labor around our house, and I was very much like, I do not want the responsibility. I don't want to be the primary parent who has to take on everything. And so you know, I did not agree to have a kid until he agreed that he would do more than fifty one percent of the work. And you know, my husband is entirely stuck to that agreement. He is an upholder and he does the things that he said he was going to do, and he has our arrangement has actually kind of shifted to the point where he is actually the primary parent and does the majority of the sort of like day to day tasks that go into her care and feeding. One other thing that I negotiated was that I wasn't going to change diapers. We the negotiation was I had to be pregnant for ten months, and you know, the trade off was that he was going to be the person who changed diapers. And he has changed probably like I mean, I have had to change some. That's just reality. I'm not going toly like it in underty diapers wait till my husband gets home, but he has probably changed probably eighty percent of diapers that she's had. And our daughter is not yet potty trained at three, so he's still working at it. And so that's one very important thing. I am definitely not trying to do everything by myself, and I think one of the very key lessons I have learned from having a child with significant disabilities is that there's absolutely no way I could do it all myself. My daughter has a huge team of people who support her. I can't tell you the number of specialists we've seen at multiple different sort of hospitals and care providers. She has multiple neurologists, she has had multiple nutritionists, we've gone to. Her pediatrician is amazing. We actually have Kaiser, which is a sort of HMO type thing where they do everything. They're both the insurer and the medical provider, and they do everything in house and everything is coordinated, which has made a huge difference in terms of the administration. But her case is rare, so they actually send us to specialists outside of the Kaiser system routinely to see and I have worked with I have you know, struggled to make appointments and to get through the sort of administrative processes at outside of the Kaiser system. And I have thought, you know, like, oh, I can understand why people quit their jobs to navigate their child's care when you know their care is such an administrative burden. So like, I will see Kaiser's praises to the end of time because of how easy they have made it administratively for us to see a variety of specialists, and like to also know that they kind of follow what she needs. Buy the book. My brother in law is a doctor and one of the things that he pulled early at her diagnosis was a sort of It was from a website called up to Date, which has an overview of her entire syndrome and the sort of what is the standard, sort of what are the standard supports, what are the you know, best sort of medications to try and things like that, And you know, Kaiser was essentially following everything by the book. We didn't have to fight for any services they have. That has made a huge difference in our ability for both me and my husband to have you know, very demanding jobs. That is amazing And I have to like that's say, like that is I know because I've seen it when it doesn't go in that direction depending on what people's insurance is. We have some complex patients right now that we're trying to get to, like, you know, centers of excellence, and it literally feels like we're banging our heads up a brick wall and the people are purposely obstructing. And you know, I can see exactly what you said that a parent would be like, well, I guess I have to literally spend my days doing that. So hearing that you have had a good experience in that regard, it's like gives me hope and it makes me think like how could well, how can we all be like Kaiser, Oh, my goodness, yeah, no, my health insurance. Our health insurance has been amazing. And the thing that I find it's actually in the like in terms of plans that are available to at least federal employees, it's actually the cheapest option, which is like mind blowing to me. The level of service and care and ease that it has provided us is astounding. I will sing their praises till the end of time. When care is truly coordinated, often at the end of the day, it actually not only helps the patients, but can save a lot of labor, extra red tape, and probably money really at the end. So and yeah, I'm just so glad that you've had a positive experience to share in that way. We're going to take a very quick ad break and we will be right back because I need to hear a lot more. All right, we are back. We were just talking about navigating complex healthcare systems and insurance systems and how a last has been fortunate to have had a good experience in that regard, which is wonderful, but also understands kind of how the other side can look. I am curious because listening to the division of labor, I am so impressed that you guys were able to intentionally you put that together. You both have really demanding jobs. It sounds like I mean, at least from the title of your jobs. Are there others who you have employed along the way other than medical specialists of course, to help or does your daughter's unique condition make that a lot more difficult, because I would imagine you kind of need a certain level of expertise to understand how to care for her properly. Yeah, so it is. We have not very much our daughter. You know, the shoes are actually fairly easy to handle. So she's at a sort of normal daycare that we picked out that had, you know it, before we ever knew she had any health issues. Is the place that she's been at for this entire time. I will say, we are in the process of picking out a sort of preschool for her, which we are a lot more picking out an appropriate place for her to move to is actually much more challenging than say, picking out a place on the front end that sort of was introduced to her challenges at the same time that we were, and it was a easier fit to sort of help them to sort of be trained to take care of her. Our daycare actually has routinely had sort of seizure training as part of their sort of I don't know if it's like their health sidelines or yeah, yeah, but they had I had training on it, and actually when her first seasure happened, one of the things they said was like, we actually recently had gone to seizure training and knew how to respond to this, and so they've always done a wonderful job in terms of her health care. I actually think the bigger challenge, as she aids, is the sort of intellectual disability part of it. Seizures are common enough that a lot of care providers know how to work with it. The other challenge that we've had is that some of her medications over the last two years has resulted in sort of behavioral challenges, and so that I think there was a point in time when our daycare wanted to kick her out. Not kick her out, but say like, Okay, we need to think about transitioning her to a traditional preschool because it's time to be thinking about that. They were very kind in like being patient with us as we're trying to locate an appropriate place. They recognized it would be challenging. They were definitely pushing her towards the door, and that was really really stressful to feel like, oh, the systems we had in place needed to change. And fundamentally, what I see in those scenarios is that we need to act early, we need to plan early for transitions, and we ultimately are kind of on the wait list at a place that has a partnership through the sort of public school system and also the ARC of our county where it is a regular preschool that's open to the public, but they also it's a daycare preschool, but it's attached to our local high school. Actually that serves both the children of teachers and also any children of students if students have kids, and they partner with the ARC, who pays for a nurse to be on site, which we feel because of that combination, they're used to having sort of medically kids with high medical needs and developmental delays, and so our daughter isn't an outlier there, even though the majority of the students there are actually you know, normal kids, neurotypical, no health problems, but they're capable of supporting her and all of her needs. Simone is now at a stage where her seizures are fairly well controlled with her daily medications, and she's on a rescue medication that is very effective but there is definitely a period of time where her seizures were not well controlled and her daycare had to be prepared for that, and whoever was watching her had to be prepared for that, and so that was really tough. We have not We have only left Simone alone with a babysitter on one occasion, and we have found babysitters through There are a lot of schools near us, so college students who are interested in working with kids with special needs have actually been our best options. And we have also had my in laws actually live about twenty five minutes away and so they actually come regularly and watch our kid, our babysitter. For the most part, we don't leave people alone with her, so people will come over and watch her while we're at home, but we still get a break from her care. When she was in the you know, there have been times where part of her issues that she doesn't really understand her limits and she doesn't really experience pain in the same way. So she's the sort of kid who climbs up on the playground and you have to be there with her because she will go off the edge, not wheeling, it's an edge and realizing that falling off of edges are bad, so anyone's got to be very hands on with her, and it was just tiring to have to keep up that level of like vigilance all the time. So having babysitters who could come and watch her in our house gave us the break that we need and we could then get other things done in a way that has been very, very helpful. But that's been the sort of primary support. Our mother in law is extremely helpful during the pandemic. She quit her job and now take our daughter to her therapy appointments most of the time. And so that's also another huge thing. Our daughter is able to get more therapy because of that extra health. But you know, like I said, there's a huge team of people between her doctors. She goes to three different kinds of therapy appointments twice a week. Her daycare has always been a huge, huge, huge support. And oh, the other thing we did during the pandemic was how hire a house cleaner, which has actually been life changing. I remember you talking about like outsourcing and finding ways to give yourself a break and talking a little bit about that, and I'm curious with your marriage and being able to have time together? Are you able to so, since it totally makes sense to me why you'd want to kind of like be in your house but then have a caregiver so that you could be available if needed, but also get a break. Do you ever take like, like, are you able to I don't know, like go on almost dates with a babysitter in another area, or like how do you work that to get some time together or even just alone time? Oh my god, I love that you asked this question because there are a couple of things we've done. First of all, we've gone to we have actually been able to take a couple of weekend trips where our in laws will come. When we traveled to a wedding, that was the first time. We were very apprehensive about it and it worked out great and we were like, oh my god, we got to get away more. Then. The second trip we took was for our anniversary this year, and we actually instead of celebrating over the weekend, we both actually took a couple of days off of work and our in laws came and stayed at our house with our daughter with everything the regular routine that she had, and she was going to daycare during the day, so they also got breaks and it was less of a burden on them, and so they were doing more like the morning routine the evening routine. They still had their days free. My father in law is still working and he was going into the office like normal, and during the day, my mother in law didn't have to be at our house, you know, and could still go on about with the things that she likes to do. And so that was one thing that worked really well for us. We've both still been working from home during the pandemic, and so that has made a huge difference because we're seeing each other a lot during the day and interacting during the day, having lunch or sometimes going on walks during the day. All of those things were really helpful. And the one other thing that I will say is we started couples therapy, and couples therapy is the best possible date in ways that I wasn't expecting. And having a kid with disabilities is an emotional roller coaster. There are are so many things to adjust to and to come to terms with, and I can say that we are super duper. It's terrible to say this, but the pandemic has made so many things possible in our lives that would have been so much harder. The pandemic literally started on her first birthday, more or less. It was like maybe two days into the pandemic and everything shutting down and daycare being closed, that it was her first birthday. It was good timing for us in terms of we hadn't really gotten hooked into very many services yet, so she wasn't losing out on services, and she was still small enough that she was fairly you could sit her in a corner and she would hang out there. And my husband's work courts were closed, so he wasn't in court nearly as much, and he really took the lead in parenting her while I was like super super busy with the federal government's response to the pandemic. You know, my agency wasn't like in the heart of the things, but we've definitely had a whole bunch of new programs that were created that we had to get implemented to provide support to families across the country. And so it was a very very very demanding time workwise, And I've totally lost track of what I was saying. I don't even remember the original question, so you can I don't know if I do either. But it was super interesting. No, it was just interesting to hear the timeline of this and how she is truly like a pandemic baby. And I was also thinking in my head that thankfully the pandemic didn't hit around the time you were doing your diagnostic stuff, because that could have gotten really slowed down. So you're right the timing where it's out really well. And then you were talking about your breaks that you're able to take, and I super applaud the mid week use daycare and then have your helpers come because it's so much less of a me that our kids are a burden, but it's much less of a task for a babysitter to come and just do like breakfast and bedtime and someone else is watching your kid during the day. That would be anyway. And then you and I are lucky enough to have careers where like we have paid time off built in, so we're allowed to take those days and we should take those days well. And I will say I take a lot of leave from work to meet my needs. So I, my boss and I. New administrations are very busy in agencies, and you know, lots of energy coming in with new ideas and new things they want to make progress on. And you know, at the beginning of this new administration, my boss and I we were like, okay, so we know that this is going to be a very demanding time. How are we building in and planning in rejuvenation time for ourselves on the front end, knowing that it's going to be hard, So we were doing things like my bosses. You know, she is that much older than me, but she doesn't have kids, and she likes long vacations, so she is you know, she's already planned out her very long vacations for the next two years, already on the calendar. I know to plan around them. I am much less in that stage of life where I want to travel with my kid a lot. But I have scheduled to take the third Friday of every month off and it's already on the calendar. I don't always do it. Some days, I use it as a work catch up day where I say I'm out of the office and I'm actually like getting caught up on stuff that's gotten fallen to the wayside. But I also will take leave during the week because it means that I can still send my kid to daycare. And I actually get time off to myself in a way that like a weekend is not rejuvenating in the same way. And you know, I mentioned that, you know, my husband and I would divide up our labor, and you know, I take basically all of the mental load stuff, all of the planning stuff. I am responsible for all of the infan that comes in and out of the house. I am responsible for all of the you know, we have one hundred year old bungalow that needs all kinds of house project related stuff thats and so you know, I and sometimes taking off of a day off of work to do like household administrative stuff. And so I get a lot of leave and I don't hesitate to use it, and you know, I just plan it in my calendar. A lot of you know, managing her care and managing work involves advanced planning, and it's knowing things like, oh, I need to schedule that appointment on you know, three months in advance, as soon as the calendar opened, so that I can get the eight thirty am appointment. And our pediatrician. One of the awesome things about Kaiser is that they have locations all around the area and so our daughter's pediatrician is a mile away from our house, and so you know, we can see her. Her first appointment of the day actually starts around eight, so our pedetrition starts early and we can take her to the first appointment of the day. Then we can drop her off at daycare, and then we can be back home and naturally not miss any of the workday. And it works out great because our daughter is up early anyways, and so you know, those are the sort of things that make a very big difference. We have our couple's therapy first appointment of the day in a morning, we go in and it is really helpful for us to be able. The one thing I'll say about couple's therapy that makes it better than a date night is that my husband really hates going out to dinner. That's not his idea of a fun activity, so he doesn't really want to do that and a couple's therapy. I said earlier that having a kid with disabilities is an emotional rollercoaster, But the thing that is really surprising is that my husband is having completely different emotional reactions to the experience than I am. Like we're not reacting to the same things in the same way, and Couple's Therapy created an opportunity for us to come together and actually talk to each other about what we are experiencing in a way that like we weren't really carving out time to sort of reconnect about and even though like we're at a really great place, I'm like, I want to come to couple's therapy once a month every month for like the rest of my life, just because it's a great time to connect with my partner in a way that like we don't always we're not always proactive about like sharing our intimate thoughts with one another, and it's a really wonderful experience that makes so much sense. And I feel like that's so true that therapy. I feel like people think of it as like you go to fix something, but it can be to just mean team something, or it can just be to some extent just like cathartic or almost pleasurable. I know exactly what you mean. I don't have the couple's experience, but I've gone on my own and sometimes it's just like nice to look forward to like my safe space this event and say whatever I want. I know that that person is probably going to be very supportive and with a couple, I could see it being like almost like moderated deep exploration time, like it needs rebranding or something. Yeah, No, it's it's it's a lot of it's a lot of fun. And you know, we've been hemorrhaging money on therapy. That's actually where we've been putting our money, and it wasn't where we were at in our Our experience so far of having a kid with disabilities is like there are periods of crisis and then there's periods of just sort of like your normal state of being. And when we were in and I will say like the early diagnosis phase was very much like I just think it's inherent currently a moment of crisis as you figure out what's going on and try to figure out what your new normal is. And like if you had told me in the first year, I would say our sort of crisis period, introductory period lasted maybe a year and a half, two years even, And that's with our daughter having actually a very easy to diagnose issue relatively speaking. Genetic testing confirmed what was going on and really laid the path and set us on a particular path in the world of epilepsy, and it was, but still it took a long time to figure out how to make everything work, and it was like one thing at a time. And in the early crisis phase, you definitely prioritize everything that your kid needs. But then when you're thinking about how to live your life in the long term, you have to make decisions that actually work for the whole entire family. It can be actually things like we are feeling overwhelmed as parents and we need to like not take you to your six therapy appointments this week. It could be things like, oh, I need to switch health insurance because a health insurance plan can make a huge difference in how you are able to like navigate all of their needs. It could be I need to find my current boss is not understanding what I have going on in my life. I need to find a new boss. Either I need to find a new job, or I need to stop working, or I need to within my organization. These bosses have the reputation of like being good bosses. You know, I was really lucky that I have an excellent line of bosses who totally completely understood when I said, Oh, my child's daycare is calling me, I have to go and answer that phone immediately. I am never going to not answer a phone call from my child's daycare. And if my daycare tells me my child is having a seizure, I am getting up and I'm getting into my car and I'm driving over there immediately. And so like you can have the meeting or not, but I'm leaving. I'm so glad that you do work with people who because yeah, that is the most important thing, and it would be worth looking elsewhere because there's got to be someone who would value you with your skill set and also understand those things. So wow, Well, I was going to ask the question, what would you tell a younger Elise who got this diagnosis or was just starting out or maybe you know you two and a half years ago. It seems like you've actually figured out a ton of things that have been helpful along the way, including some concrete things you've shared here. Is there anything else that comes to mind as like advice you'd give somebody embarking on something like this. One thing I will I haven't mentioned that I think is very helpful is like other organized groups either around your kid's disability or other parents with kids with disabilities, other that are both local or perhaps national, It doesn't have to be. I think each of these different kinds of groups offer different things. So the group that's organized around my kid's specific disability, that's the place where I go where I have very specific questions about, you know, are you experiencing X, Y Z other very specific thing. They're the people who most understand what we are going through, even though within that group everyone's experience is actually across contingent. And to be perfectly honest, that is also the group that sometimes causes me the most anxiety, because I feel like I am seeing my future in front of me, even if I have no idea what I'm experiencing. So that's not my favorite group, but I also know they're the ones who get me. I generally like local sort of special needs groups with people with all kinds of disabilities, which makes me feel less alone but also feels more practical in terms of like they're the sort of people who you go to like, oh, well, what was your experience navigating an IEP process with the local public school, or what schools are particularly good for kids with different types of disabilities, or you know, those kinds of questions. And then national groups do all kinds of really fascinating programming, like one of the groups that I've been seeing recently with the Courageous Parent Network, which helps supports families with kids with like high high medical needs. I recently went tended two events. One was about traveling with your kid with significant disabilities. Another one was about financial planning for a kid with you know, significant disabilities, and those are they're providing that kind of content, which is really helpful for me because I'm a planner. In addition to my law degree, I also have a master's or been planning. So I like to tell my husband I literally have a degree in planning. And I get different things from different groups, but I also have to recognize like which groups I need to tap into when and recognizing that I don't, you know, like I don't always love the Dravet group because of the anxiety it causes me, and you know, not recognizing that knowing what it's good for. And the other thing that I was going to say is that having a kid with disabilities feels very lonely, especially as all your other friends are having kids who are progressing normally, and it can feel very lonely. And my experience has been that, no, they don't understand what you're going through unless you tell them, and that it is incredibly meaningful to tell people what you're going through, and that does a lot. It won't change the fact that they don't truly, they're not experiencing what you're experiencing. But if you don't want to feel like you have to leave your long standing friendships behind because they don't understand, you have to tell them. You have to like basically bring them along with you. And so that that has actually made a tremendous difference to feel like, my friends understand some of what I'm experiencing because I've told them about it. And keeping those friends and relationships in your life is super super important because, as you said, it can be isolating, and so you need to keep those ties. So that totally totally makes sense. Oh my gosh, so many like very actionable things here, which I think is amazing. I'm going to have to like write it down in a list for the show notes, would you take us through a brief day in the life before we share our love of the week? I love the logistics. I always sneak this in when I can. Yeah, my life is actually pretty simple. Since we are working from home and I typically wake up somewhere between six or seven, I don't don't set an alarm because I recently realize that I have not been getting enough sleep, and everything is so much harder, and everything is so much worse, and things were calming down, So like, my number one priority right now is sleep. I am trying to get My average sleep over the last six months, reporting to my Apple Watch was like six hours a night, and I was like, oh, that's why I feel terrible, And so now I am prioritizing sleep, so I don't set an alarm. I tend to get up between six and seven, though most nights, based on when I go to bed, and depending on what time I wake up, I will exercise. I've previously liked more intense form of exercise than I can handle right now, and what I've noticed, probably because of all of the stress of the last few years, was just that more intense exercise was depleting. So at this stage, my version of exercise is doing a lot of walks in the morning. I have some friends that I will call on my walks, other friends with kids, other friends who exercise or walk their dogs in the morning. And so it'll be a social thing. Then I will usually come home and kind of putter or do chores or all that sort of thing. In the meantime, my husband is getting my daughter up. He's the one who is dressing her, giving her bath, you know. He usually prepares her food the night before so and she usually eats for the first time at daycare, and so it's really just like getting her ready. He will bite her to daycare. If the weather is not good, either raining or too hot. Because one of our daughter's seize your triggers is actually heat, I will drive her to daycare. But usually in the morning it's usually cool enough that he can bit her in and then I will shower, get ready, sit down and start working. And it usually continues. I usually have my first meal around like eleven, and then I have my second meal day, usually around four. Our daughter actually recently started a medical a medically supervised keto diet, and so she is not at the stage where you can eat around her, so we don't. So I try to eat before she comes home, because if I wait till after she goes to bed, it's too late for me to eat and like go to bed comfortably. So I try to do like two big meals at like eleven and four for my meals for the day. And then because it's summertime, it's typically hotter, so I'm more likely to be picking her up from daycare, although oftentimes my husband does and he's still able to buy her and best case scenario, it's not too hot. They will oftentimes stop at a playground on the way home where she gets to run around and get out a lot of extra energy, and she is usually you know, she has an ice vest that she wears, and she also my husband will go with like ice water and an insulated container to help keep her cool. She'll stay at the playground until she gets a little twitchy. She has multiple different kinds of seizures. One of the seizures literally just looks like twitching. You wow, might not notice it's like a is it like a precursor, Like you're like okay if it doesn't necessarily elevate, But they will continue like she's not gonna cool herself down, like it's more like she needs to be brought inside. She needs air conditioning in order to cool herself off. And so then they'll come home and we'll usually go straight into cooking food for her, which my husband also usually takes the lead on preparing. She's been on a Kido diet for about a month, which is to say, like every single thing that she eats is measured by the gram. Every single thing that goes into her mouth the diet is like ninety two percent fat and so like she's literally eating like variations of butter soup for meals. And for those who are listening, this is a fairly well known protocol for for severe seizures. So this, yeah, there may be others who have experienced this as well, and to be medically supervised and everything, like you said, yes, which is why she has two neurologists. She has her Kaiser neurologists and then her neurologist that has overseen her sort of Keto protocol because Kaiser doesn't do that themselves. So she will eat her food and she loves her Keto food. It's amazing. We thought it was actually going to be really hard because everyone's like Keto is horrible or very difficult to do, but she actually loves her Keto food. She literally eats everything we put in front of her, which she had actually been really picky about food before starting Keto. I think that like her body intuitively knows that she needs it, and it's been incredibly helpful. We've been able to reduce medicines. We've been able to we've seen massive improvements in her development and her speech, and it's also calmed a number of sort of problematic behaviors that she had. So we love Keto Keto for life. That's amazing. And so this is a relatively recent development. But like preparing her food is something that only takes you know, like fifteen minutes now, and then she eats and we sit around and she it's like the portions of food are very small, and so she eats in like ten minutes, maybe a little longer if she's she's working on learning how to spoon feed herself and so and use utensils, and so that takes a little bit longer. But dinner, we all sit down together for dinner, but you know, she's the only one eating, and after she's done eating, she likes to help us clean the table and then we sort of like play and putter around our house for maybe an hour or so, and then my husband gets ready for bed and I then take over and do story time and cuttle time, and we just sit. I just like grab a stack of books and we just like sit and read. And we usually will read in our bed and then you know, I'll sit there and I'll say are you ready for bed now? And she's like no, and and then I'll ask we'll sit with a little longer, and then I'll ask her, are you ready for bed now? And she'll like no, And you know, we'll do this back and forth and it's one of my favorite rituals of the day, so just you know, and then eventually she'll be like, yeah, I'm ready, and so then I'll go and put her in her bed, and she has this little doll that has like the sound of a heartbeat and breathing, and she like I'll tell her to give her the dollar squeeze. She'll give the doll squeeze, and then I'll talk her into bed and I'll say, you know, we're just outside the door. If anything comes up, we're still here. And then she goes to bed, and then I will usually sort of weathe a bit before bed, and it's really, like I said, you know, we're not doing very much. We're still like relatively tight COVID wise, since she can't be vaccinated, and because her getting stick would cause lots of complications or increases the likelihood of seizures. So we like we kind of like stick around our house because she needs air conditioning. It really limits what we can do outside, which is unfortunate in the summertime. Any day that is remotely nice weather wise, we go crazy outdoors. But you know it's summertime in the DC area, so it's not great. Oh my goods. I think it sounds very cozy and lovely and peaceful and that you've crafted are really thoughtful of routine around everything. So I'm glad we did the day in the Life segment. All right, love of the week. I'm excited to hear yours. Yes. So I mentioned that we have a old bungalow and we are probably going to be doing some renovations and it'll be one of the projects that I largely manage and make the majority of the decisions about and do all the coordination. And it is a tremendous amount of work. And I was talking about this with my therapist the other day and I was like, I can't believe we're finally getting to a place of relative calm, and I'm like entertaining the idea of introducing this like crazy wild card. And I just had the epiphany the other day, like, you know what, I'm going to treat this like it's my hobby and I am going to at like there is no rush to get everything done. I can spend as much time as I want sort of planning and preparing for it, and it doesn't have to have a timeline. I love houses, I love old houses and things like that, and so one of the things that I found recently actually was a podcast called Advice from an Architect, And she just happens to randomly be a architect in the DC area who has this podcast who talks about these are the realities of like doing renovation projects and things like that, and I realized one of the things that was really stressing me out about the project was just feeling like I don't know anything about it, and so this is kind of talking me through what are the things like this is like real talk from an architect. What do you need to know if you want to do a big renovation project? And so it's like really informative and fun. That sounds awesome. I'm so intimidated by anything related to renovation. Thankfully, I don't think our current house will need too much because it's only thirty years old and we already put in floors and that's the extent what I can handle. But if I ever need to, I will check out that podcast. That is awesome. My love of the week is I just finished Emily Saint John Mandel Sea of Tranquility, and oh my god, I'm just I loved it, loved it, loved it. I loved her other two books, which were Station eleven and Glass Hotel. I know a lot of people love Station eleven. Not everybody loved Glass Hotel, but I really did. And this third one is just like it takes pieces of the other two and it's just like wild and I thought it was fantastic, cool. All right, Well, at last, this has been so fun. I may actually have to convince you to also come on Best Laid Plans, so maybe we'll have to chat again soon. But really, thank you so much. This was such a pleasure, and I know we're going to get a lot of listeners who find this incredibly valuable as well, So thank you. I'm happy to chat. Awesome. So that was amazing, so much great and actionable advice from Elise. This question this week from a listener is a little bit different but might be a fun one to think about. So this listener is, you know, running a lab that has many scientists working for her, and she has been recently given two thousand dollars to spend on professional development, so the funds can be used for various things, and she was asking us if we had ideas on how we thought she should spend it. She threw a few things out there, but Sarah, I'm very curious, what do you think somebody should spend two thousand dollars on if they have this fund setting around for professional development? Yeah? Her, I mean, I'll mention one of her ideas was personal styling. And even though I think that is like such a cool idea and I get why it makes sense, I think in both scientific communities it would be a really hard sell and if you didn't get an outright no, you might still get some pushback. There's also, two thousand dollars is a lot of money, so you could probably potentially do those things for a little bit less than that. I'm not talking about buying the clothes themselves. But the actual like styling. So maybe since it seems like you're super excited about doing that, that might be something you pursue on your own if I had two thousand dollars, And she clarifies that this is like in addition to other kind of leadership and management training and regular conferences, I would probably pick a really fun conference focus on personal development of some kind, like working women. I don't know, like something like that where and they do have that kind of thing in the medical world. I know of several, like female physicians empowerment type conferences. I would totally spend it on something like that, and I would treat it as a little mini retreat for myself and I would really really enjoy it, you know, if there wasn't something more concrete skill set that I wanted to get. You also mentioned like some kind of like planning type training or management workshop, you know, run by one of the bigger companies, and I think that could be really really cool as well. Yeah, I just think the styling question, which is sort of was the forefront of her question, is going to be a hard sell for most But I still love that you want to do that. Yeah, I think it's a great idea. Yeah, I would say a couple of things. You know, One is like buy some books that you've really just always wanted to read, and I guess they wouldn't have to be totally focused on, you know, your area of science. That could be just anything self help, development, professional of course, you know books aren't that expensive either, or you can you know, you wouldn't get through the whole two thousand dollars on this. She had asked about coaching as well. I think you want to be careful with this because the world of coaching is, like, you know, some of it is total snake oil. There are some people who are very good. There's some people who you know, quit their job and then now want to tell other people how to do that job that they freezing quit that did work out for them, So you know, you got to be careful with this. But I would say that if there was a specific skill that you were looking to build, maybe it was professional speaking or some sort of writing skill, maybe leading meetings, you might be able to find very focused coaching on that sort of thing, and then that might be something that would feel very useful in terms of investing in that versus just overall general I need a life coach kind of thing. But yeah, it's a fun question. I would love to hear from listeners about how you would spend two thousand dollars on your professional development and something that would be a little bit out of the box. So not just you know, your industry's big conference every year. Let's assume you're already going to that. What else would you spend it on if you had two thousand dollars? Let us know and in the meantime this episode, Sarah has been interviewing a Leif Thompson. We will be back next week with more on making work and life fit together. Thanks for listening. You can find me Sarah at the shoebox dot com or at the Underscore Shoebox on Instagram, and you can find me Laura at Laura vandercam dot com. This has been the best of both Worlds podcasts. Please join us next time for more on making work and life work together.