Transcript
Speaker: Welcome to season three of the Guardians of Hope podcast. We are a community of parents, educators, health, legal, and tech experts dedicated to positively impacting children's lives. The thoughts and opinions of my guests are not my own. This is a platform for sharing.
Speaker: Welcome everyone. Most parenting advice assumes a baseline that millions of families don't have. A parent who is healthy, predictable, and fully present without limitation.
Speaker: But three in four American adults live with at least one chronic condition, and many of them are raising children while managing something unpredictable, painful, and often invisible to the outside world.
Speaker: Today we're joined by Hilary Hodge, a writer, educator, and self-described champion of parents with chronic health conditions. Hilary lives with severe asthma and Addison's disease, and what began as her own personal struggle to find resources became a mission to create them.
Speaker: Hilary, thank you so much for joining me today. Thank you for having me. So you've lived this from the inside, managing both severe asthma and Addison's disease while raising a child. What did you discover when you went looking for resources to help you navigate that?
Speaker: And what did it feel like to find almost nothing there? i think that's a great place to start. um You know, i before my son was three, I had been in the hospital five times with just different flare ups of my two conditions. Um, and he was so young that it didn't matter. we we could just tell him, you know, mama's going to be back soon. She's seeing a doctor something like that.
Speaker: But I started to worry. I still remember the day that I had the idea for the book. I was gardening and weeding and, um, I just thought, how am I going to explain this to him when he's older? And I thought, you know what, I'm going to buy a book on it I'm going to go inside. I'm going to find a book that's perfect for me. i was assuming I would find maybe a dozen and I would just find the one that was best for me. Um, and so went inside and and got online and I was shocked when I couldn't find anything. And I thought, okay, i must be Googling this wrong. Um, maybe I'm looking at the wrong kind of book search engine. And I did find a couple books, but they were very much geared toward parents, um, sadly, who have terminal conditions, um, which is heartbreaking, but also, um
Speaker: Not what I was looking for, because I am very lucky that even though my two conditions can be unpredictable and sometimes debilitating, I should have an average lifespan if I if I follow treatment. And I know that there are hundreds of millions of other parents out there with the same exact age.
Speaker: kind of parameters to their conditions, parents with conditions like lupus and rheumatoid arthritis, kidney disease, type one diabetes. um So I just was really shocked that it didn't exist. And kind of you asked how I felt to find nothing there. I mean, as a little thought exercise, i Googled paleo cookbook and I found 2000 of those. So it was just strange to see that there were 2000 paleo cookbooks, but that in the parenting book market, which is pretty saturated, that there was nothing for this. So it was kind of astonishing, to be honest.
Speaker: Yeah, it is. Absolutely. So you went ahead and created um resources. um But the next we'll go into that a little bit more later. But I have another question about living with serious chronic illnesses. You know, children often sense that something is wrong way before they're told anything by their parents.
Speaker: How do you help parents find the words to explain um something that even though they're still processing themselves, the parents? I think that's ah an excellent question. And you mentioned that I started by creating resources, which is exactly right. So my my first steps, you know, I've been in education publishing for 25 years now. So I think writing a book just seemed like a very natural fit. I believe very much in Toni Morrison's advice. If you if there's a book you want to read, but it hasn't been written yet, you've got to be the one to write it. um You know, so I sat down and I kind of outlined all the things that I would want to know. But then I wanted to make sure
Speaker: that other parents had the same concerns. So I interviewed, I started interviewing, you know, a handful and then dozens and then over 50 family psychologists, clinicians, you name it. And it actually really changed how I thought about the conversations because in my mind, I thought that automatically any kind of conversation on health stuff would be scary. And I realized,
Speaker: Absolutely not. You know, and and I got that from people that work on supports, you know, social workers that are on support staff at hospitals dealing with very difficult situations, but also the parents of adult children whose kids turned out just fine, you know, and I think that what I realized is it's very true that the parent can be frightened if they themselves are still processing it.
Speaker: Yeah. But that they can handle their conversation with the children very differently. And I think the keys to doing that are, you know, taking time to collect themselves, talking to a therapist, talking to friends, but being careful not to do that when they're at home because kids ah hear everything, even if we think they're out of earshot a lot of the time. And like you said, they might sense something is wrong. So I think the key is to, as soon as parents know for sure what's going on, it's good to get data.
Speaker: um You know, sometimes testing takes a while, but when they feel like they have a definitive diagnosis, or they're ready to explain symptoms to their child or, you know, whatever, whenever they feel ready to practice it with a therapist, practice it with a friend, practice it alone when the child's out of the house and don't assume them that it'll it'll scare the child. um You know, I think that it helps to remember that kids are, um young kids, school-aged kids in particular, are very obsessed with bodies, find them pretty interesting. um So I think what the parents can do is compartmentalize in an age appropriate way. They can say, okay, privately, I might be anxious because I'm having XYZ symptoms. I'm having heart palpitations. I'm exhausted.
Speaker: I've lost a lot of weight, but I don't know why. And every test coming back says I'm fine. Now that might be very frustrating for the adult, of course, because they just want to know what's wrong, but they can tell the child in a way that's honest that you know I don't feel well, but so far the good news is it doesn't look like anything major is wrong so far because my doctor has done all these tests, right? So there's ways to let kids know that the adults around them have a plan and they're the parent can deal with those own more complicated issues on their own. Does that answer your question?
Speaker: It does. And it leads me to my next one, which is great. You know, you touched upon age appropriate conversations, but you've actually developed scripts, age appropriate scripts or talking points for talking to children about illness. Can you dive in a little bit about how those conversations look like um at different ages?
Speaker: Sure. So um I do, I have simple scripts on my, on my website for everything's free and downloadable parenting while sick.com. And that is,
Speaker: for conversations around explaining a condition to a child or a flare up, a new medication, explaining a hospitalization, which is helpful to have because sometimes someone outside the family is going to do that if the parent is in the hospital unexpectedly. So it's nice to have that as something you've already gone over with a trusted caregiver, um as well as scripts for how to talk to figures in the um adult figures in your child's life. you know Sometimes that can be a little uncomfortable ah to explain to a teacher or a coach or a music teacher, you know, something that feels very vulnerable. So um I do have scripts for all those different things. I think that the key script for giving a child updates, telling them about a new condition um is pretty straightforward, five steps, I'll tell you that one. And I think,
Speaker: Before I explain those, i will just note the most important piece of it, which is to intertwine together information and reassurance. um What reassurance looks like is, for example, you know i have been diagnosed with diabetes. 500 million people have that, is the reassurance piece, right? Because it helps your child say, okay, it's not just my parent. It's you know hundreds of millions of people. So I'll talk in each step about how you can weave together information and reassurance. So first is to say what's going on. You know, i um I've been diagnosed with a new condition. My condition seems to be acting up a lot right now. It's getting a little worse, but my doctor says that's normal, but a ton of people have it, you know, like I just mentioned as the reassurance. um Number two, tell them what the treatment plan is. And that can be, you know, pills,
Speaker: injections, a new device, how you use it. You know, sometimes just giving kids a lot of information in a very neutral way is helpful that you can show them the medicine. If someone comes to the house to give them an injection, for example, they can watch, you know, it doesn't have to be freaky. um And it's important for kids to know where medication is and what it looks like and how it works, especially older children, if you need it in any kind of emergency. um So treatment plan, you know, you can tell them everything. Three, reassuring them you're in good hands. You know, again, you might privately be frustrated with your endocrinologist because you feel like the appointments are too short and you can't get into as much as you want.
Speaker: But you can tell your child, I'm seeing an endocrinologist. This is all they do for a living. um They see hundreds of people like me a month. um And that's true. And it's reassuring, even if privately, maybe you're thinking about getting a second opinion or something like that. um Number four is to talk about your condition and how it will affect you and how it will affect them. So, for example, um you might say a parent with lupus might say, I'm in a really bad flare up right now.
Speaker: I'm exhausted. I'm going to be taking more naps than normal and my joints are hurting. So if you could be careful about climbing up on me, maybe you can cuddle next to me instead. That'd be great. um And kids school age and older, it is very important to them to know how it's going to impact them because they just have such a rich life outside of the home. So for example, are they still going to get to sports the same way? um If the parent is going to be hospitalized for any time, they might still care about things like, will they get their allowance? You know i mean so just thinking ahead of all the things that are important to the child and making sure they know how it affects them. If a parent is going to have to be going to um get treatments or go to support groups or something like that, they might say, you know, on Wednesday nights, um you know, Becky's dad is going to ah drive you to soccer, right? That's an example of how it will will impact them. um And then the fifth step is to say what you need from them. And a lot of the time, that's a good note to end on a positive. You know, I could just use extra hugs and kisses, the practical, I could use your help unloading the dishwasher and walking the dog because I'm a little more tired than normal. But I think the big thing to end on is to tell kids, you know, you can feel about this. There's no right way to feel about it. You can be
Speaker: sad, you can be neutral, you can feel like nothing's changed. I want you to feel okay living your life as you do normally, and you never have to feel guilty about it. I'm happy if you're working on homework and you know all of that, because sometimes kids feel anxious if they feel like their parent is unwell. um So they need that cue from their parent to know it's okay to their life Yeah, to keep the normalcy of the the kid's life. Exactly. so you mentioned flare-ups. Now, flare-ups can be unexpected um and hospitalizations, of course, can be unexpected um and and suddenly frightening for children to witness. um how do their How do parents prepare their kids for those moments when they do happen?
Speaker: And what's the right way to handle the aftermath? I think that's a a really good question. And it's a question I love because I think parents, it's great to know that they can actually plan for the unpredictable. You know, you can prepare for the unpredictable here by starting on days when you feel well. And like I mentioned above, showing your kids where you keep the medication, how you use it for a medical emergency that could be, um you know, for an asthma attack, where the nebulizer is, patients.
Speaker: Graves' disease that can cause thyroid symptoms, you know, what to do, how to call 911. There's a sample. Again, i have I have this on the website, but a sample script you can go through um that of all the questions dispatchers would call just so kids feel comfortable calling 911. Anytime they've practiced things, it's a lot easier in in real time. um You can put that script right on the fridge so they can just look at it because dispatchers tend to ask the same questions. You know, how old are you? What's your relationship? What's the parent's condition? What's your address? Stuff like that. Um, and, uh, if the parent is in the hospital a lot, you know, with, um, something like kidney disease and lupus, um, parents parents can have, or or just people with those conditions can have an average of about three hospitalizations a year. Um, so that's a good thing to just prepare kids for ahead of time. You know, you can look at
Speaker: photos of the inside of an ambulance online. If you have a local, um, EMT department, that's really friendly. Sometimes they'll let people tour the ambulance and see it. Um, and you can look at pictures of hospital rooms ahead of time, just so again, kids have seen it before they know what the equipment is. It helps make it less scary. Um, you can talk about EMTs and doctors as heroes so that when it does happen, kids are knowing that their parents are in really safe hands. Um,
Speaker: And in terms of the aftermath, if you don't mind if I just keep going for one more minute, it's a good the aftermath is a good question um because if kids do witness something traumatic and they are acting like they're kind of freaked out by it, maybe they saw their parents loaded into an ambulance after seizure, an anaphylactic reaction. um The Whole Brain Child is such a great book in it and it has a really good tip and technique for when when children experience trauma, which is to have them practice telling the story over and over again as you prompt them, you know, and then what happened and then what happened. And the parent just keeps saying to the child over and over, And then you did this and that was so great. And then you did this and you helped you know mama with that, or you brought me apple juice when I was having a hyperglycemic episode. And then we were both okay, right? And so you have the child practice telling that story to a neighbor, to a co-parent, to a grandparent. enough times that they rewrite it in their own head and it feels less frightening and they feel like they acted really maybe kind of heroically or helpfully and then the next time it happened they have that narrative.
Speaker: Does that make sense? Yeah, 100%. Thank you for that. So You talked to me when we first met about parenting from the couch. I remember, you know, um imagining what that felt like. But can you explain to my viewers what it actually looks like to be a good, connected parent on the couch on the days when your body just simply won't cooperate?
Speaker: Sure. And i in the book, one of the things I did was pull together 50 of the top things parents can do and how critical they are to good parenting, like to be affectionate, predictable, give kids lots of attention, reinforce good behavior, um teach kids about emotions using TV with the point being that parents can read all these things and realize that they can do all of those from the couch, right? Because so many parents are homebound a lot of the time that have these conditions, especially if they're prone to flare ups, um you know,
Speaker: CFS and ME, um I think it's something like a quarter of people with that condition in the United States, which I think is 250,000 people alone, report that they're home, you know, most of the time, most weekends, most evenings. um So I think it's helpful for parents to have an arsenal of things they can do that don't require the TV. And I spent a lot of time researching and finding 150 different activities that don't require the TV. um All kinds of things, crafts, you know,
Speaker: Things that are pretty straightforward, none of it's rocket science, but it's helpful to have a list that you can go to on those tough days. um I came across a family that I loved this. They do a ton of puzzles and there's a kind of glue I discovered from this, from talking to this family that um you put on top of the puzzle when it's done, that like makes it sort of permanent. And then they hang all the puzzles they finish in the garage because they're not like the most beautiful, but just as a gallery to remember all that family time, you know? Yeah, that's great.
Speaker: So you talked a little bit about emotions as well, right? Like handling emotions, How do you help parents work through those big emotions that come with a chronic illness, guilt, grief, anger, anxiety, shame, and fear? um Can you share some examples or just some ways that or that you approach um the big emotions that parents have?
Speaker: Yeah, you know, I think um something really timely that I can share that's interesting is I just completed a survey with the European Lung Foundation with parents with pretty significant lung issues and the biggest challenges they have. um So I'm reporting on very recent data. And it's really the first survey of its kind because there's not a ton of research out there about parents with chronic condition. And there's almost none about what kind of training they would like to have. There's a lot of research that agrees that a whole family approach is best, but not a lot on the what the training should cover. So the results of this, I thought were so interesting. I gave parents the option to choose between, i think it was something like 12 different topics. And the number one was how to manage difficult emotions. like these, the ones that you just listed. So um I found that really fascinating. I thought, okay, this really is actually the biggest need that parents have. in the book, I have a lot of different kind of emotional tools. I have six different ones. um
Speaker: I think, you know, the stop method, you know, but pretty cognitive behavioral therapy um techniques that you can just use to kind of help slow down your brain and process. But I think really big ones are getting outside of yourself. And I always think one of the best things that people can do is to talk to themselves like they would to a friend. You know, sometimes parents are just so hard on themselves. They feel guilty about everything. The parents I talk to, they feel so guilty. um And so we work a lot on, you know, well, what would you tell your sister or your best friend if this were them? um Which is just such a basic exercise, but it can actually really help reframe. um But obviously nothing can really replace, you know, therapy, support groups, um
Speaker: Another area I'm really interested in is that online support groups, it's an enormous market. um There's tens of millions of people in Facebook, Health Unlocked, Reddit support groups, but very little guardrails or moderation, but they can be so useful.
Speaker: So I've done a lot of brainstorming because this I just needed for me, because I've never really seen tips like this out there, on kind of how to navigate online support groups because like I said, they can just be so useful, but they can also be scary um because people tend to use them more when they're struggling. you know If they're feeling really well, very rarely are they logging on saying,
Speaker: I'm feeling great today, you know? um And so it's kind of like remembering that it's going to skew negative, having a plan for what to do if someone in your support group dies from that condition, because that happens pretty often. And there's not really, you know, guardrails in place for that. I think it's very important for people to know it happened. I'm not saying it, people shouldn't be able to post that. But for example, I have Addison's disease, which can cause adrenal crises.
Speaker: And I would say we lose someone once every six weeks, which is very scary to me as a parent. A lot of the time they're people that are um doing everything right. And that to me is very scary. So I talked to my therapist about it. I have a plan, you know, I, but it took me, you know, I just had to do some brainstorming around. That's a very real emotion to come out of this is fear. And you have to have a plan for what to do when that fear is very real, you know?
Speaker: Yeah, definitely. now I have one more question for you, um for parents who are just diagnosed and terrified about what this means for them, their families. What is the first thing that you would want someone to know when they are navigating this for the first time?
Speaker: Well, I would say there's two streams, like we talked about before. Mm-hmm. If tragically it is a parent that gets a very difficult diagnosis, something that could be terminal, um I think that's one pathway. And there are actually a lot of really good resources for that. um A lot of excellent books. And in particular, two organizations that I love are um Wonder and Worries, which is a website. It's an organization down in Texas, but they have a really great website. And then Fruit Fly Collective in the UK for cancer. Those are both fantastic resources for parents um
Speaker: struggling with very serious cancer diseases, or cancer diagnoses, things like that. I just want to acknowledge that. um If the pathway is, you know, you have this condition, but you could have an average lifespan if you get proper care and treatment, still very scary. But I think it's helpful to adjust and to and to also realize that there is that, um right, that scope. Yeah. And so, um you know, it's going to be hard, but Tons, you know millions of parents before you've done it. That's what I loved about talking to all these parents with adult kids is a lot of the time they said their kids turned out even more empathetically than their peers. They were more likely to go into healthcare, care not because they felt like they had to kind of, you know, rescue their parent or anything like that, but just because they were fascinated by the industry. They grew up around it. You know, one of my parents, her rheumatologist wrote her son's recommendation letter for vet school. um You know, so it's knowing that you're on a well-trod path, I think is important.
Speaker: um Accepting that you are going to have to create an alternative narrative children. your life, you know, like there, that we tend to have a pretty straightforward idea of parenting. And I would say most parenting books operate under the assumption that parents are able-bodied. So that in itself is already creating a different narrative. Um, but just cause it's different doesn't mean it it's bad in any way, you know, it's, it's okay to mourn the parenthood that you wanted to have. But a lot of the parents I talked to have realized that in some ways they feel like they're even better parents cause they're so present and they spend so much time with their kids, you know, um,
Speaker: I talked to a lot of parents that, because they're home a lot, come up with new hobbies, like raising chickens and baking every item in ah in a cookbook, you know? And so there's there's real trade-offs to maybe even being a better parent. And I will end with them this, my answer to your question with a book I just reviewed that I loved, Unfit Parent by Jessica Slice. And one of the arguments in it is that parents with disabilities might in some ways be better equipped than parents without, than able-bodied parents, because they're so used to navigating the medical system. So pregnancy is easier. um They're used to bodies failing. They're used to, um you know, plans going awry. They're used to, they've already given up on any kind of ideas of perfection. You know, they're much more immune to those, all those Instagram posts of perfection. So,
Speaker: Does that help answer your question? It does, Hilary. Thank you very much. Now, where can people find your website? Share us um share with us your link and any other information that you can provide for people to learn more about your resources.
Speaker: Sure. So the website is parentingwhile sick.com. And there are tons of free downloadable PDFs, videos um for both families, but also clinicians and foundations. um My hope is really that a lot of this work from a more whole family approach will be taken on by foundations with the capacity to do that. Maybe offering videos that parents can watch anytime, but really just kind of acknowledging that this is a need. And starting that conversation is what I'm excited about. So I have a contact section you know on the website if anyone wants to connect me with their foundation. i do lots of trainings um for parents with all kinds of conditions. And then on Instagram, I am just on my name, Hillary Hodge. And there I put um also free resources and ah interesting articles about this topic and things like that.
Speaker: Wonderful. Hillary, thank you so much for your time today.
