Turning Worries into Words: Interview with author Emily Reed (Summer Book Club)

In our summer book club, meet children’s book author Emily Reed, who channeled her own anxiety about her son’s food allergies into a book to teach him confidence and self-advocacy. Emily and I dive deep into her journey as a mother navigating the complexities of having two kids with food allergies and FPIES, the fears and guilt that come with it, and how she channeled those emotions into creativity and advocacy. We discuss the role of literature as a powerful tool in transforming anxiety into empowerment for both parents and children.

 Mentioned in this episode:

Red Sneakers For Oakley

Home - Allison Rose Foundation

Big, Brave Voice: Advice for Children Living with Food Allergies a book by Emily A. Reed (bookshop.org)

Email Emily at bigbravevoice@gmail.com

FREEBIE:
For my free food allergy book recommendation printable go to www.DrAmandaWhitehouse.com/

Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme. www.kyledine.com

You can find Dr. Whitehouse at www.DrAmandaWhitehouse.com
or on Facebook (Dr. Amanda Whitehouse, Food Allergy Anxiety Psychologist)

Transcript

0:00

I was imagining all the things that would be difficult, like Halloween. And You know, thanksgiving, any type of dinner any type of party, birthday party school. I was imagining sending him off to all of these things, whether I'm with him or without him and thinking, you know, I want him to be in these events and enjoying life to the fullest and not avoiding because I think that's what I started doing when he was young. And this anxiety was setting in. We'd be invited to school. A party by when he could crawl and I would worry about him crawling on the ground and putting a bit of peanut in his mouth or something. So, so I started to avoid and, and then you start to realize, well, his mental health and sense of belonging are just as important as anything

Speaker: 0:45

Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence.

1:06

Today we're having our book club episode and I'm so excited to welcome author, food allergy mom, Emily Reed. So Emily is the author of her first book, which she published this February for her son, George, who has food allergies. And she says that she wrote the book to help him with his bravery about dealing with his own food allergies and using his voice to advocate for himself. So I won't tell you too much about her because I want her to tell you in her own words, but thank you so much for joining us, Emily. I'm so excited to hear about this. Thank you so much. Thanks for inviting me. It's a pleasure to be here. Absolutely. So you published your first book in February. I'm guessing it's probably been stretching and working for a while Yeah, it has. I had no intention of actually writing a book. It didn't really start that way at all, which is, which is funny. But it, it's so appropriate that your podcast is about anxiety because it really stemmed from my own anxieties and sleepless nights after his diagnosis, which happened when he was only six months old and he's five and a half now. So it was quite a, quite a while ago. And. You know, what was tough is that I went through at that time, I'm sure, which all parents do when they learn the kids have food allergies. I went through this strange time where I thought, you know, there's so many worse things that a doctor could tell you, there's scarier things. And, you know, I think that that was my first thought. I don't know if it's everybody's, but it was mine because my dad is a pediatric oncologist. And he was at the Cleveland Clinic and I just. growing up with a dad who has to constantly having to tell parents their kids have cancer. You know, hearing a diagnosis that my son has food allergies. My first thought was, well, this could be scarier. But but then after that it really, you know, as we start, the reality sort of sunk in slowly from there. So it wasn't an all at once like this is gonna be really scary. It you don't know how scary it is until you're, you know, Dealing with it. People who haven't been through it, don't understand. And that's kind of the realization I came to. I think that's an important piece of this. And I, I, I say to people in my private practice all the time, we, we do this thing that you said you kind of did early on in the process where it's like, Oh, it could be worse. Right. And we start to compare, what are my stressors and what are my problems? And. We have good intentions for ourselves, right? You're absolutely right to put things in perspective. I do that to myself all the time in terms of talking through my son and I just had a kind of a bad experience recently where he was okay, but we had to Epi and you know, we were at the emergency room and the car in the, parking garage and you know, I'm seeing moms come out and wondering the same thing. Are they, you know, are they, they have a child in the oncology unit here? There was a family that pulled up beside us with a car that, you know, didn't have a window. There was duct tape over the window with plastic. All the ways that we're blessed and all the resources that we have and all the problems that other people have that could be worse doesn't solve my problem for me, right? It doesn't make mine any easier than it is, even though I can objectively see that. I would rather have this than many other things that are going on. Yeah, yeah, that's right. And I think, I think too you know, food allergies are a funny thing to, to be, to just come into your life when you didn't deal with it before, which was my case. I don't have a history of it myself. I don't have siblings that have food allergies or even friends. And so, so I think that my mind also went to thinking about friends. We're parents now, you know, we're all grown up who have kids and they have nut free classrooms and they have things that are inconveniences to them. And so my mind sort of went to that too, how, how it's viewed and how I've overheard conversations that didn't mean much to me ever, not that I ever would have participated in that kind of talk, but I heard it and, and I, you know, remembering that after you're then diagnosed it really started sinking in for me when we were being social, you know, at six months old, this was pre covid, we were still going to parties and toting around our new baby in public places. And you start to realize something that you always knew something obvious, but everything centers around food and life. Every party is, is. is a lot of food every gathering with family and friends and movie theater or Halloween every holiday. So, so you, you sort of realize over time how scary it really is and it just gets harder. And I think that's where my insomnia started setting in. And I actually, I wrote big brave, brave voice one night, it just as a poem. Just, you know, I've always sort of liked to write on the side. Nothing that I ever shared with anyone more like journaling, but but I sort of wrote it all out one night and instead of insomnia and then kept working on it and working on it. I mean, the 1st thing I wrote looks nothing like it looks today, but I published, but yeah, that's that's how it came to be a very long winded answer to your question. That's okay. I like the full explanation. I don't want the short, short and sweet. It sounds like even though, of course, you are concerned in your care for your son and how he was going to deal with his allergies was the impetus for the book, really, it was your own anxiety about managing the allergies and keeping him safe. Yeah, that's right. And I think the way that it, that it came out into the message of self advocacy. So it was a combination of 2 things. It was my own anxiety, but then also, you know, even when he was just 6 months old, 8 months old, 9 months old, we love to read to him. Of course, everybody loves to read to their, to their babies. And he was our 1st too. So it was kind of like, yeah, that's right. You know, really sitting down with an infant, reading to them and just looking at the pictures. You have time for that sort of thing. A luxurious time to read books and much more time for that. But but I remember at the time thinking, oh, well this is a good opportunity. I'm gonna find some books about food allergies. And I found some really great ones, but none of them quite had the message that I, I had just decided I was after, which was, you know, learn about your food allergy and how to speak up about it. The books were much more about, you know, being accepted by others. A lot of people have food allergies and those things are important too. i'm not diminishing that and I still read those to him. But there was just one theme that I couldn't find and that was the the self advocacy. So that sort of inspired the the book, the content of the book. Yeah, yeah, I agree. And I was looking through all of my favorite kids allergy picture books that we have. I have a big collection that I use in my office that obviously were my son's first before they ended up in my office. And I completely agree with you. And I was so excited when we sat down and started reading your book, because there was, there's, there was a hole there in terms of this, A concept of self expression and self advocacy and communication and how important it is. So I'm so glad you realized that and created something. Yeah, Thank you for saying that. Yeah, and it's been really helpful because I did read it to him before it was published and but when he was a baby before he could talk and it was that, you know, kind of what we were after is that one of his first complete sentences might be, you know, I have a food allergy or I'm allergic to what's in that, you know, those types of things and he did, he, you know, he went off to daycare at just when he's just learning to talk and his daycare teachers preschool teacher, they would all come back and say, this is amazing. He reminds us all the time and. So it really accomplished what I think we were after. And, you know, of course there's still anxiety around food allergies, but just to have a little bit of peace of mind that he's, he's out there protecting himself by just even reminding people is, is really a comfort. Yeah, absolutely. So for those who haven't read the book yet, but hopefully are going to go and find it and read it with their kiddos. Maybe you can say a little bit more specifically about how the book tries to teach that and what you're referring to when you're saying about wanting those to be his first words. Yeah, sure. So So the book starts off at just basically introducing George and the fact that he has a food allergy. And I talk about the things that, that were hard for me. So I'm remembering I wrote it sort of before he was big enough to realize how hard it was. But I was imagining all the things that would be difficult, like Halloween. And You know, thanksgiving, any type of dinner any type of party, birthday party school. I was imagining sending him off to all of these things, whether I'm with him or without him and thinking, you know, I want him to be in these events and enjoying life to the fullest and not avoiding because I think that's what I started doing when he was young. And this anxiety was setting in. We'd be invited to school. A party by when he could crawl and I would worry about him crawling on the ground and putting a bit of peanut in his mouth or something. So, so I started to avoid and, and then you start to realize, well, his mental health and sense of belonging are just as important as anything so. So that, that's where I started to sort of piece together the story. And in the story, it, it shows that he's afraid of, you know, bringing his own food a little bit embarrassed. I was trying to imagine what that might be like. I remember being a kid and feeling embarrassed if my mom put my lunch in the wrong type of bag, you know, so, but, you know, showing up to parties with your own cupcake and things like that so I start off by, by sort of going through those things that I imagined would scary as a kid with food allergy or uncomfortable or embarrassing and then, and then I put the twist on it that, he's a hero and he's brave and he, he speaks up. He, he's not afraid to enjoy the parties. He's not afraid to go. He doesn't want to miss out. It just takes, if there is food around saying to the adult, I have a food allergy or what's in this, I'm allergic to eggs and nuts. And of course, that's not completely foolproof, but it certainly adds a layer of protection. And, and that's essentially the book. It just goes through those different scenarios, I wanted it to be a bit engaging. So it encourages the, the kid reading along to, to say it out loud themselves and be the hero for themselves. Wonderful. I love the way that you do that. Of course, all kids go through phases. So the things that you've imagined about how he'll experience it, some ages and phases for us, they didn't. And then now I've got my oldest is a 13 year old. So I definitely am have one in that end where I'm I have to be really careful what I do or it's embarrassing or it's, you know, it's cringe or it's annoying. And then I've got my youngest is an eight year old and he is still just in awe of the world and everything's amazing. And so he was so starstruck today that I was having a podcast interview with you, the author of this book that we just read together. He said, I have to ask you if those were George's first words. So sweet. And you know, his first word was, to be fair, probably ball. I think I'm a terrible mother that I don't know for sure, but I think it was ball, but definitely among his first complete sentences where I'm allergic to, well, the way he says it actually, he says, I'm allergic to tree nuts, peanuts and eggs. So he, he's very specific, but that was among his first full sentences and it was very sweet and impressive too. That's great. Very proud of him. I love the book and we'll talk about some other parts as well, but for me as a mom reading it my favorite part was, Your bio at the end and where you talked about his take on bravery. So I was hoping that you could share that in your words for everybody listening. Yeah. So, so I think, you know, a lot of that stems from this, this poem that I wrote for, for him, because remember I read it to him before I published it. So we talked about, we would talk about bravery a lot. It's, it's kind of shaped the way I would speak to him about it. And we would talk about, you know, To be brave, you have to be scared first. That's, that's really the definition of being brave. So, so he, he repeats that and he says that, and it actually, it seeps into all aspects of his life, which is pretty fun. He's learning to swim now. We're a little bit behind on swimming, as I'm sure a lot of COVID babies might be. The swim lessons kind of took a backseat, right? But he's learning to swim now and he is a little bit scared, I think, starting late. So I referenced that in the book, learning to swim. Actually, I, that was a change up later. But he's learning to swim and he talks about, if I just, I'm going to be so brave because I'm scared, but that because I'm scared, I have the chance to be brave. So he says things along those lines quite a bit. I love that. And it's so true. I mean, I think, you know, we have all of these, you know, you talked about imagining him as a superhero and the way that we sometimes in our world conceptualize things on the surface and the way we represent them visually is not. So I always say these kids with allergies are the bravest people I know, right, and, and bravery isn't never being afraid, even though we look at, the images kids are given like Superman or whoever it might be that they're not afraid, it's not brave if it's easy to do, if it's not hard, if it's not challenging. Yeah, yeah. I think for me as a mom reading it, Similar going back to what we were saying before, how this kind of started for you, even though it was for George, that's how I experienced it for me. And I was the one who needed the reminder. The moms are the ones who need this reminder, I think, sometimes even more than the kids, especially when they're little, because developmentally, of course, they're still young and innocent. They've got these great self advocacy skills often, and they don't understand quite what's going on. The degree of danger, right? They don't fully understand the risk. They're not thinking the things that we're thinking when they're crawling across the floor at the Christmas party or whatever it might be knowing all of the places that danger lies that no one else in that room foresees if they're not living this life we are. So I think all of us moms and dads and. Grownups who are helping kids with allergies need to hear that too. I have to be brave and let you go to the party and, and do what we need to do to get you there and get through what's hard for me so that, as you said, you can have that social life and that full, experience of life that we all want our kids to have. Yeah, that's right. Yeah, it seems like, and I think that's, this is what your practice has been about, right? Which I think is so interesting. It's high risk that if you have food allergies that you might develop anxiety. And I think I recognized that from the very beginning, just, just because I thought, well, my allergy, my anxieties are going Rub off on him. I'm going to give him these anxieties. So it's really a lot about that. Yeah, absolutely. And I think I, I'll probably talk about this repeatedly as long as I have this podcast, but I, I want so much for myself and for you and for everyone else who's listening in our shoes to little by little take, try to take that guilt off of our shoulders. I think all moms experience mom guilt, but for us, I think it's so much harder. And there is research that shows that, right. The more anxious the mom is. about the food allergies, the more likely that the child will develop it. But that presents it as if it's so simple to just not be anxious. And we, everything that we do to keep them safe, especially when they're so little requires so much hyper vigilance. It, it creates, it's a recipe for anxiety for us. It's not just that we're not handling it well and oh, you got, you let yourself get too anxious and now your kiddos anxious. It's so complicated. It is. And it's hard to with family and extended family. If you've got other people taking care of your kids you know, understandably, I think their level of anxiety is, is high too. And they, they want nothing but to make sure that when they're, your child is in their care, that they're safe. And, but that becomes, that becomes hard to you have to sort of, you have to sort of try to educate then your own family to, to relax about it a little bit too, without giving them a message that you shouldn't be careful and vigilant. So it's, it's this balance of like, you've got to be vigilant. Yes. And carry the EpiPen, but also we have to enjoy life and do all the things. Yeah. Right. It always gives me that metaphor that people use of, you know, the duck swimming and the legs are furiously paddling underwater. And then on the surface, we're calm and serene and we're gliding along and it's not as easy as it looks. And for me, sometimes that is not how it appears outwardly. And I know it, but that's what we're aiming for. And that's, you know. It's pretty tricky, especially, like you said, when we're pulling other people in, too. Right, that's right. While we're on the topic of mom guilt, you have beautiful illustrations in your book, too. I'm not sure if you want to say anything about them, but There's one that stands out for me in terms of this mom guilt. And it's the picture of George when he's standing by the table of the food and he's kind of got his head on his hand and it brought tears to my eyes because as you described, I don't know if my child has actually ever had an experience like that, but I've worried about it so many times that he would and it emotionally, you know, we talk about the poem and the words and the self advocacy, of speaking the language around allergies. And there's also just something beautiful about the way that picture books can touch us with, with the images and touch on emotions that for me as an adult, I needed to see that, that someone else worries. And that's exactly how I feel in my worried brain at 2 a. m. when I can't sleep is that that's how my little boy is going to feel. Yeah. You know, it's so true. The illustrations were really exciting part of the book that I felt about. Brought it to life. And to your point the images were, I worked with the illustrators to come up with the images out of my head. These scenes that I created that in my own mind that were giving me angst thinking about the future, but then also thinking about Kind of happy images of him joining in, in parties and playing or, or in his superhero cape, feeling strong and practicing saying the words in front of the mirror, practicing saying I have a food allergy. But, but one of the illustrators in particular, Rachel Dove, she's one of my oldest friends who supported me with, with actually finishing up the illustrations at the end because it was very challenging. You know, just for time, everybody's so busy. Every, every illustrator that worked on this book is a mom. And they were all absolutely wonderful, but it was an exciting part to see it come to life through that. And I'm glad that you recognize it. That one illustration that you're speaking of is one of my favorites. Yeah. I love it. And it's it's interesting. I don't know a lot about the publishing process, but I didn't realize until the end that there were multiple illustrators. So the way that you pulled it together, and I don't know if they worked together to kind of streamline the style, but it's really beautiful and just visually appealing as well as. Touching with, with your words. Thank you. Yeah, they didn't work together. I worked with each of them. They all used the same medium. They all used watercolor, which which we decided in the beginning would be different and fun. A lot of images and picture books these days are more digital based. So I really wanted to kind of use, inspired by the older picture books that I'm in love with really wanted it to be artistic with the watercolor paintings. It was great. I love it. It turned out beautiful. So you said that you published the book in February, but it goes back, you said George is five and a half now, right? So five and a half. Tell us the timeline of the actual project and when it, when the poem came to you and your Sleepless Night and then when did it actually start becoming or how did you realize maybe that it became or should become a book? Yeah, so my Sleepless Night was was pretty soon after his diagnosis. So probably six to eight months old. And then After that, I just became sort of really into it in the evenings. It was a really great release. It was a stress release. I think I mentioned earlier, I've always liked to journal, and this was a different type of writing that I've never, I've never tried to write something that I would ever intend to share with anyone. So it became something that was, pretty exciting for me and energizing in the in the evenings. I would sit down and just kind of go back to it and make a change here, make a change there. And then I would start reading it to him. And then eventually once I had the story down, it actually didn't even rhyme at first, but once I had the story down, that's when I kind of went back to every, every Section and worked on the rhyme, which is, which it was interesting process because after I did that, I was sort of been reading about rhyme and trying to learn about it and and make sure that I was doing it the right way. And that was a lot of authors actually suggests that you write the story first. And then you try, you go back and make it rhyme, which is so I learned a lot. I don't know that everybody writes that way, but that was a suggestion. So it was really interesting to sort of learn about different author's perspectives. I did get I joined some different author communities online as well as after I got a bit more into it and authors out there share work with each other, which is so fun. And they say, you review this and let me know what you think, or read this and let me know what you think. And I'll read yours. So there's a lot of sort of that you know, community that I've never been a part of. That was. really fun. I don't know that I would ever do it, do it again because I think it for me, it was much more work than it would be for someone who's, who's written a lot of books in the past, but it was really great to, to get into that process. And then once I felt really good about what I have I decided to just go ahead and look into the self publishing industry, which I didn't know anything about either. And you have to be a little bit careful if anyone's ever interested in self publishing, there's a independent author protection type groups out there online that give you a lot of great information about what to look for and self publishing and what to avoid. So I did a lot of research there and found a great self publishing group called Palmetto Publishing out of South Carolina. And they were lovely to work with. I engaged with them. I think two years ago is when I started and it wasn't until, what took a long time from there was the illustrations. So it would have been much faster if I had had the illustrations done when I went to them, but I didn't. I just had, I just had the words and, and they gave me a lot of good advice on how to find. the illustrators. So I think from when I started with the publisher to when it was actually published was just about two years. Well, thanks for sharing that too. I was thinking, you know, I think there are a lot of us as, as food allergy moms and as moms in general, who are helping their kids with whatever challenges we have, like you said, it's almost energizing in the evenings when, you know, you're probably exhausted from being in one mode, work, work mom, you know, on the job mom to, and this is how the podcast, like how I'm making time for the podcast for me, even though I don't have it, is that it's, helpful for us to feel that we're doing. I think something productive we're helping our children, but really it's a bigger picture thing, right? You said earlier, I want to get the words out there. I want to have this in other people's hands who it might help. And I think that's very healing for a lot of us. was it that way for you? Absolutely. It's been really, it's been great. And it actually has been an inspiration to me to, to sort of. Get out there in the food allergy community in other ways. I don't I'm sure you're familiar with bread sneakers for Oakley Yeah, so I actually joined their group as an ambassador this year, and we did a red sneakers day at my son's preschool, and he starts kindergarten next year, and they've already agreed to to do a red sneakers day there. And I'm hoping that it's something that they'll continue to do just in it. I love that because. Then it's just making a safer place for George and other kids with food allergies, even in the schools, you know, building empathy of other students, building empathy of other parents, you know, back to the comments that you hear, you know, there's, I think there, there's definitely a need to, to raise awareness and education because I don't think that anyone is mean, I don't think they intend to come across that way with comments. It's truly just, they don't understand. How challenging it is. So, so I think raising the awareness through education and advocacy is, is just such a great way to, to do that. Yeah, I agree. And I love that. There are a lot of great resources out there and all of the best ones were started by parents right out of that Tragedy, right? It's just absolutely Yes And especially for those you do want to say a little bit about red sneakers for Oakley for those who may not know about their organization and their story I encourage you to look it up and read about it., they started the organization for Oakley Dobbs. He was 11 years old when he, he was tragically lost to, to his food allergy. And one of the reasons that his family was inspired to, to raise awareness and education is that, you know, they didn't they didn't react to the symptoms immediately. They, they didn't use the EpiPen and he actually went to sleep and that's, when he passed they were at a family function and he, he had a bite of banana bread or some, some sort of bread or coffee cake or something. And they didn't know, and they just didn't recognize the symptoms of as anaphylactic. Yeah. It's so unfortunate. I think it, I, it takes the bravest kind of parents to take that tragedy and that loss and, and use your, your, your. deepest pain to help protect and save other people. So I, I think all of our hearts break for them and appreciate them so much because we know so much more how to keep our kids safe from absolutely the resources that they've provided to me to get out into my community. They've been incredibly generous. They send me materials and food allergy awareness bracelets and We actually have a in our community, we have a parade over Memorial Day weekend where everyone throws candy. So, so I actually was in the parade representing Red Sneakers for Oakley throwing non food treats. And they even sent me some soccer balls to throw that said Red Sneakers for Oakley on them and just so much fun. That's just, they're a great organization. Very, very generous. That's great. Good. Well, I hope more people will hear about them. And it's one of my hopes one day to maybe talk with with Oakley's mom about that experience. Because, you know, I think that is all of us back to our anxiety. That's all of our deepest fear, right? Deep down is that we could lose our child. So to see someone who's done it and and soldiers on is, yeah, very inspiring. It is. There's another great organization that's more local to me, it's called the Allison Rose Foundation. I don't know if you've heard of that one. I haven't. Yeah, I don't know quite as much of the detail. It's one that I've, I've, I've have on my list to really sit down and read about, but I do know that one of the great things they're doing is training restaurant staff to use EpiPens. There's a, yeah, I have a good friend who manages a great restaurant in Cleveland and he was telling me about how they came in and were training the staff on how to use EpiPens and recognize the signs of anaphylaxis. So, you know, just really great things different organizations are doing. That's wonderful. I'll have to look into that one. I can link it in the notes beneath the show so that more people can read about it. Yeah. Yeah. You mentioned, the other books that were out there and I'm just curious what your favorites are in addition to your own beautiful book. What, what other books does George like at age five, five and a half? Is that right? Five. Five and a half. Yep. He'll be six in December. Yeah, he, he really likes the, the nut, nut leaf, the nut free squirrel. He likes that one. I liked that one a lot too. And then there's one that I haven't read to him yet that I've actually, that's on my list to order called Land of Knot. Have you seen that one? I haven't. It's, it's written by I think he's a teenager. I'm not sure how old he was when he wrote it, but it, I was just reading a description about it, and I know this wasn't your question, you're asking George's favorite, but it's one that I want to pick up from, and it's written from the perspective of a teenager, I'm pretty sure with food allergies, and it's about You know, the land of not like, I can't have this. I can't have this. But then what can he have? And it's about all the wonderful things he can do and can experience and trying to look at life with that positive spin. So it's one that I'm looking to pick up. That sounds like a good one. I love the Nutley books too. Those are cute. And we had the Bugabee's books, which were you, They were coming out like when my 13 year old was younger and we were new. So I don't know if those are still floating around as much as they used to be. But I think that was funny. I'll have to look out for them. So I feel like there's a really important thing that we haven't touched on about you yet, which is that obviously George inspired this book, but George is not your only kiddo and not even your only kiddo with allergies. Right? No, he's, he's not. Yeah. Thank you. I also have a daughter, she's two and a half Marley. And she has a very rare food allergy. called F pies and, and I, I think that you probably know more about it than I do'cause I'm still learning. She, her allergy is a little bit different. She's not anaphylactic. but it's not a sensitivity either. Avocado, bananas. and probably Kiwi, but we're just not going to try. We're, we're navigating understanding it. It is could be life threatening. It's, it's vomiting until there's nothing left. Sorry to be graphic, but that's the reality of our lives, right? Epi pens and vomiting and rashes. Yeah, but for her, it's just the vomiting. So it's more of a, of a completely just a GI reaction, which sounds more like a sensitivity. The first two things we gave her, banana, avocado she was just getting really violently sick and we had to go to the, to the To the emergency room, but when we figured out that it was actually an allergy and they're connected, it felt more like, well, at least it's not, I don't know, some weird thing where she can't eat food at all, What's it like managing such different, not just different foods, but a different, you know, symptoms from your kids, different presentations and, and even relearning what this different kind of allergy presentation is for Marley. That sounds so cool. Yeah, it's it's tough. It's tough to explain to people too. I think because you know, I work full time. My husband works full time. So we have them and we need full time help so that they're both in preschool. Now George starts kindergarten in the fall, but now they're in like a full time preschool summer camp, essentially. And You know, so it's fresh in my mind just filling out all of the various paperwork to have the EpiPen on site and for George and then to have Marley's medication on site and Marley's medication is Not something that people are familiar with because it's it's such a rare condition It's just this one pill bottle with one pill in it That that you're that she's supposed to take if she starts vomiting so, you know having to get the instructions from the doctors and explain that to the nurses and then I kind of had to go back to the school a couple of times to, to re explain. They were incredibly diligent. I have, it was wonderful. I love that. They're so careful and diligent. But I think navigating their different allergies, you know, with George's allergic to eggs, and that's really tough because it's in so much. Right. And knowing that Marley has some food allergies, her allergist explained to us that it puts her at higher risk to develop the other top allergens, right? So we can't avoid eggs in our house and we can't avoid nuts in our house because we're, cause that's another bit of anxiety. I'm worried that Marley's high risk now and I don't want her to, to develop more allergies. So we do still have eggs in our house. We have nuts in our house and I, whether or not that's the right thing to do. I question myself all the time and I worry that other people question me all the time. But we're just trying to do the best we can and listen to the advice of the professionals who said, if he's not having a reaction when you guys are eating eggs around him, then he's that much safer in the real world. So, he can be next to eggs and not have a reaction. So that part of it is really tough. Just always wondering and questioning yourself is I'm being, am I being careful enough? Am I being too lax? Am I going to, To cause a reaction in our own kitchen which knock on wood hasn't happened, but yeah, it is challenging. You're touching on something that I see so much of the time was, which is, it's, it's almost as though all of these wonderful efforts to educate people and in a situation like yours can backfire. Because I think even the most well meaning of people, if you walk in, say, with Marley and say, well, she has a very severe food allergy, people almost jump to that assumption. Oh, okay. We know what to do with food allergies. We, we know how to use EpiPens and they think that they know. Already, but really, it's just so individualized from person to person in terms of what symptoms present and what we need to do to respond. Yeah, yeah, it's complicated and we're trying to learn and I think that that's been just the theme throughout our entire journey. Even after George's diagnosis, I never knew how much I didn't know about food allergies and how much there is to know. And. You know, I have one thing we haven't touched on, and I don't know what your experience was with your kids. I'd love to know, but with George when he was about 4 months old, he was covered in eczema, just really, like, severe eczema, and we were at the pediatrician, and she said, you know what, you need to, you need to introduce Some of these allergens early, because this could be a sign and I don't know whether that was the best advice or whatever it probably is for most people. But so we did, we went home and we gave him a little bit of peanut butter and ended up in the emergency room. So, you know, I think that I think about that a lot. I think about the connection between eczema and food allergies, and I've spoken to my pediatrician about it and my allergist. And. I don't, I think that there's still a lot of research that needs to be done. But, but one of the theories that my pediatrician shared with me really resonated that kids with eczema, their, their skin is broken. And if, if you're eating something that's an allergen that has one of these proteins in it that you recognize as a, as a something harmful and then you touch your, your infant with that. And that's how they're being introduced to the food through their skin instead of their gut for the first time. There's a theory that that can cause food allergies, and that really kind of made a lot of sense to me. And so it makes me wonder too, and I say this and my husband thinks, oh, here we go, another project to get words out. But, you know, I think about when you're at that, when you have your baby, when you have your newborn and you're going to the vet, the pediatricians for the first time. You see posters about cutting up hot dogs and cutting up grapes and choking and sleeping in the bed with nothing else. Don't put bumpers or blankets or, you know, maybe there could be a poster about eczema and what that means and washing your hands really carefully after you eat allergens. It just seems that maybe there could be some benefit of explaining the theory publicly. Absolutely. And I'm familiar with that. And it absolutely resonates for us because my son also had really severe eczema. It was just dismissed by the pediatricians, even though our mother's instincts, we know, right, that something's up. And so they told me to use a vino, which is a really gentle. Right? Lotion for the skin. So of course I'm smearing that poor boy up in a vino all the time. Well, vino has oat in it. So guess who's allergic to oats? And I had multiple allergists after that. Then when he would eat them, he would develop rashes. And I know that that's how it started. And I had multiple doctors tell me, oh, that's not possible. You can't be allergic to oats. From all the people I knew, I thought, I'm pretty sure you can be allergic to anything. So he, he definitely is allergic to oats, which is a very uncommon allergen, but I agree. And from what I've read, and then seeing it happen, that, that skin exposure, because that's not how the body is, is created or designed to experience a protein, right? We don't want proteins coming in through our skin. It's that, that barrier protects us. So, unfortunately, I agree with you because I was thinking my son is so much older than yours. things have changed. We all in the allergy world know they used to say delay until two and then they changed it. And we all put, feel guilty of ourselves for not knowing, even though we just did what the doctors told us to do. But I don't understand why there isn't more awareness and, and advocacy around this, like you're saying, because we've, I think there's been a decent amount of evidence for quite a while. Quite a while. I think back and it just feels so frustrating to me because we were those first time parents taking newborn classes and they were teaching us, how to change a diaper, which I've done 100 times before, before, but, but all like, but if I just would have known a little bit of that information, I definitely would have washed my hands more. Not that I didn't wash my hands a lot with newborns. We all do, but I think I would have been that much more careful with food around them. Yeah. Absolutely. Yeah. Well, so the next project then is not another George book or Marley book. It's a, it's an advocacy. Okay, you can see around eczema, I guess, and the connection to food allergies. Yeah, well, and I just want to go back and touch on again, because I think there are so many of us parents, and I don't mean to emphasize that. It's just the moms. I know the dads feel it too, but I'm a mom. And I think a lot of us. carry it differently. Back to what we were saying about people who mean well, who think they understand just making our guilt worse and not understanding. Because both with that and with what you were saying earlier about questioning, is this the right thing to do to have eggs in our house? And if they're dangerous and every family situation is so different and all we can each do is work with, our doctors, Watch our kids, consider what our lives are like and come up with the best way that we can do things until we have some different information that, okay, that didn't work for this reason. But you have two kids to take care of. And so you're doing everything right the way that your kids need you to do it. And that's hopefully, you know that already, but that's for everyone else to hear too. We all have to do it our own way. Yeah, we do. It's, it's really tough. And then, you know, I think it's risk tolerance too, is something that I think about a lot is, am I tolerating too much risk? But I think I'm just trying to have a realistic life for George. I want him to experience eating in restaurants and I want him to experience all the birthday parties and everything that life has to offer. And I think obviously our, our immediate physical safety comes first, but we have to factor in the things that you're saying, because it's kind of a short term, you know, versus a long term question. We could keep them 100 percent safe, right? We know exactly. Again, that's the lucky thing about allergies. We know exactly what to do, but in the long term, obviously doing everything to eliminate every risk is going to have longer term, more complex consequences for our kids that we, we don't want to create. Yeah, exactly. That are harder to understand, even harder to see when we're in the midst of our anxiety, right? There's been many a party or event where I wished I would just stayed home or wanted to just stay home when it was time to go and back to what George says about being brave, right? It's scary. And we know. We know it's the right thing. And we know that, being brave helps us to grow and helps us to learn, right. Even though it's not easy to do. Yeah, that's that's exactly right. I'm glad that you that it resonated with you. The message from the book. Thank you. I loved it so much. My little extrovert would want me to ask, and I think you touched on this, but is there another George book in the works or Marley book? Do you think you'll ever tackle something like this again? If there would be another book, it would have to be a Marley book, you know, the mom guilt idling in. I do worry. I do worry about retention for George. But, but, Me, I mean, I don't, I don't think so. I'm not planning on it now, but who knows? I might have a night of insomnia ahead of me where, where something happens, but I decide to, to release the stress in that same way because I actually did find it a very effective way to release stress. I bet. Well, and I will say I don't know off the top of my head of any books about F pies, so that might be a topic that there's a need for a little more. Yeah, I'm, I'm certain of it because we're experiencing it and still know nothing. So you're right. It would be a good topic, maybe a good topic for one of your podcasts too. It will. And I do, I want to do a bunch of, cause there are so many things that are related, thank you for mentioning it. And I'm sure I will at some point. So what is the best thing about allergies? Yeah, and actually this question is, is a fun question for me because something fun has come out of all of this and that's that George and Marley and I love to bake together. They don't tell you about the number of birthday parties that you'll have to go to., so, you know, we do a ton of baking because George brings, he decides what he wants to bring. Usually it's his own cupcake. But I never. Was into baking before I had no interest and now we can put together a homemade eggless cake or just about anything else that you might want. We figured out we perfected brownies recently, but it's just, it's so much fun and doing it together. And I Marley, I think that as she gets older, she gets is more into it now too. And we all see it as this way of supporting George and, and I think that he, he loves that. And then he's proud of what he brings. Cause you know, one of the things is being embarrassed about bringing your own food. I was always a little bit worried about that. But he does things like he'll, he'll draw a cupcake and he calls it our recipe and he kind of, Colors it the way he wants us to decorate it. We did that for my, my husband's birthday. I think it was last year and he kind of held up the, his ingredients next to the finished product to see and it was like a, you know, just a really special and fun thing to do with him. I love that. It's so sweet. Yeah, yeah. Well, where can people find Big Brave Voice, your book, if they would like to read it? Yeah, you can find it anywhere online that books are sold. It's also, if you're near Chagrin Falls, Ohio, it's in our public library here and at Fireside Bookstore in Chagrin Falls. And I have it on my list to drive around to give it to some other bookstores. Well, and selfishly, I'm thinking, no, don't, don't waste time doing that. I want, we want more books. So if there are more books in you and they come out, I think you have an, a knack for it. And, and touching on things in a way that, that really hits home. So I'm really glad that I found your book and thank you for sharing that with us all. Yeah. Thank you. Thanks for having me. This is just so much fun and a pleasure to talk to you really, and good luck with your podcast. It's so great. Thank you. I'm really glad I had you here. As always, I want to wrap up our episode with three things that you can do as soon as you're done listening to take some positive steps in terms of confidence about managing your food allergies. Here's a list of what Emily and I came up with that we thought would be the most simple action steps that you can take number one, read a book to your child. Any book, reading books develops empathy. It helps us to feel seen and validated. It helps to give us as adults and the children listening, different perspectives, insight into our own feelings by watching other people as characters in the book, experience them. They give us vocabulary for things that we might not be able to express. They improve our communication skills. And most importantly, the experience of snuggling up and reading a book with your child can be one of those glimmer moments that we've been talking about. One of those moments that calms your nervous system. Helps you to co regulate with your child so that their nervous system feels calm and soothed and safe. The physical affection and closeness that we experience and the way that we connect when we read books with them is so different from the way we interact with them the rest of the day. Number two, get the list I've created for you of children's books about food allergies and related issues. Emily and I are going to both put our favorites on there for you. And if you go to my website, dramandawhitehouse. com, you can find the link in the show notes. Sign up for my mailing list, and I will send you that PDF of some great books that maybe you haven't had the chance to read yet. Number three, Go Buy Big Brave Voice by Emily Reed. It's a beautiful book. The watercolor illustrations are very soft. And lend well to touching on the emotions that are experienced during the book. Emily's writing is beautiful. It is written in a simple verse form that kids can really connect to. My son loved the rhyming structure through the book. And as I said during the episode, it really does touch on an aspect of food allergy life that there isn't a lot out there for in regards to children's books. So whether your kiddo is little or a little bit bigger now, having that model of self advocacy and communication in order to keep them safer and help them feel more confident is a wonderful thing for your kiddo. And this book is a great way to achieve that. So once again, big, brave voice by Emily Reed. And thank you to Emily for taking the time to be on the podcast with us. This podcast is for educational purposes only, is not a substitute for professional medical advice, diagnosis, or treatment. If you have specific questions or concerns about your health or a medical condition, please consult your allergist or other qualified health care provider. I'm Dr. Amanda Whitehouse. And until we chat again, remember, don't feed the fear.