Empowered by Hope
You want the best possible quality of life for your child regardless of diagnosis or prognosis. Raising a child with medical complexities is often lonely, scary and overwhelming. Join two parents of amazing children with rare medical complexities, Emily K. Whiting and Ashlyn Thompson, to get help and grow with them into empowered advocates for our kids. Here you’ll find a community of support, encouragement, education and resources, equipping you to navigate your child’s medical complexities with hope. To get more personal support, connect with us directly at www.ParentEmpowermentNetwork.org.
Empowered by Hope
Courageous Parenting: Advocating for Your Child's Health and Wellbeing while Managing Your Fears
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Imagine the fear gripping you as you hear your child’s complex medical diagnosis for the first time. It’s a fear Ashlyn Thompson and Emily Whiting deeply understand and tackle head-on in this episode of Empowered by Hope. Join us as we explore ways to transform that paralyzing fear into a wellspring of courage and hope. From acknowledging the terror of the unknown to verbalizing your fears and reducing their grip, we share strategies to help parents advocate fiercely for their children while navigating their unique journeys with resilience.
We delve into the intersection of fear and faith, underlining the importance of accepting fear as a part of life and taking actionable steps to manage it. Highlighting the value of mental health support, whether through therapy or medication, we emphasize that seeking help is a sign of strength, not weakness. Ashlyn’s personal story about Emory’s pre-op preparation shines a light on finding courage amid overwhelming dread. Remember, you are not alone in this journey—our community is here to offer comfort, support, and hope every step of the way. Subscribe, share your stories, and connect with us to find the strength and solidarity you need.
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Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while, Empowered by Hope, is here for you. Though we wish you didn't know this heartache, we're so glad you found us, so together we can walk this journey in hope.
Speaker 2:Hello, welcome to the Empowered by Hope podcast. You have your co-host, ashlyn Thompson, and Emily Whiting here today. Today we are going to talk about a topic head on. We are going to face the gorilla Ashlyn, the gorilla of fear.
Speaker 2:How many of you I wish I could see a show of hands have ever felt just consumed, that's the best word I can come up with. You're feeling like when fear threatens to consume you fear of the unknown for your child, fear of the unknown for the future of your family. You know, I think it starts from the moment of the diagnosis and we we dance with fear from then on. But there is hope, don't worry, there is. You learn how to dance with fear without letting it trip you or letting it stop you or letting it keep you under the covers all day in the dark room Not that our children ever make that feasible, even if we wanted to, but anyway.
Speaker 2:So today we're going to talk about when fear threatens to consume you. What do you do? How do you dance this dance with fear, knowing that it's going to be part of your life and not letting it consume you, rob you of the joy of the day-to-day or impact the current or future aspects of your family and your child. So, ms Ashlyn, I love how you put it. When we talked, we were prepping for this episode, and you said fear is a part of life, regardless of whether you have a child with complex medical needs. Right, this is just part of life and, in fact, it's a healthy element of life. It's influence in our life is the aspect that we have more control over, right, and so we're going to talk about what do we do with this fear and how do we navigate it. Yes, thank you, emily.
Speaker 3:That's a great tee up. So I think really quickly, when we're talking about fear here, we can list all kinds of different fears. I mean it's fear of your child, on your other children, or fear on the impact of it on your relationship with your child or your spouse. Money fears, all the things. This conversation applies to fear as a large umbrella. I've had all those fears.
Speaker 2:We're not talking about one specific kind of fear.
Speaker 3:But what that umbrella does funnel down to, and what Emily and I really feel like is important to move forward with this conversation is, when you look at every one of those types of fears, really the consistent theme with all of them is, ultimately, it's the unknown. It's the unknown of the outcome of that fear that is plaguing your mind, and that's a scary thing to have taking your attention 100% of the time. Yes, but so we're going to talk about what are the practical ways that you can address fear, live with it and even learn from it to help you be your child's best advocate. So, as Emily said, you have to face the gorilla in the room.
Speaker 3:My mom has said that phrase for as long as I can remember. I remember my dad. His expression usually was you have a lot of time. Fear is actually no more than you know. Sometimes it's no more than a mouse that's in a room, but because you aren't facing it, the shadow of it looks like an elephant and sometimes there will be an elephant standing behind you, but there will be a lot of times that it might just be a mouse and until we turn around and face it and really acknowledge it and by acknowledging it, emily, and I would recommend giving words to it. Whether you're saying it out loud to each you know, to somebody who's on your support team, whether you're writing it down for yourself, just hearing it out loud honestly sounds different than it will in your mind. I promise you.
Speaker 2:Fears will always sound worse inside your head a few fears will always sound worse inside your head. When I voice my fear, usually I'm embarrassed to because I know that the fear either has grown to be the elephant when it was a mouse, or it legit is an elephant and I don't really want to expose it.
Speaker 3:Right, there's a little bit of that. I've played that game where, if I don't you know, maybe it's that ostrich syndrome we've talked about If I don't say it out loud it's not happening. Or don't give it. You know the power, you know some people talk about don't say negative things out loud. Well, I mean, I don't think that's really fair. I think we have to acknowledge the potential consequences. You know negatives, you know that's part of addressing the fear, so that way we can move past the fear. So step one is actually defining what you're scared of and getting pretty specific with it, because if it's this big, broad, giant mess of a monster, then it's a lot harder to sort through, it's a lot harder to get out from under that weight.
Speaker 2:Yeah, yeah, and your fear evolves as your child's wellbeing and journey evolves. You know, like I remember at the beginning of our journey with Charlotte, my fear that just consumed me day and night is is my child going to make it? And then the fear evolved to. You know what's life going to look like? Is she going to walk, is she going to talk, is she going to this, is she going to that? And then, as life keeps going, you start grappling with those things enough and looking at them head on and your fear evolves to a lot of different things. But you start to learn this evolution from fear to courage or fear to hope. I'd say courage and hope kind of go hand in hand. But you can't make that crossover until you've faced that gorilla and you've really acknowledged. I'm afraid, putting words to it Like at the beginning of our diagnosis with Charlotte, I'm afraid my daughter's going to die. Boom, I just said it. You know, like hearing that out loud is like the oxygen just got sucked from the room. But at least I got it out and now we can talk about. Okay, do we have the right specialists at the table? Do we? You know, have we done what we can?
Speaker 2:There's a lot of things out of our control, which is the next point. So after you acknowledge and figure out what sometimes I don't even know what I'm scared of. I struggle with this a lot, with anxiety. I'll be anxious all day long. I'm getting better at it where I'm anxious and I have to stop myself. Sometimes anxiety and fear are like besties in my brain. To stop myself and be like what am I anxious about, what am I fearful of? And it takes a hot minute to figure it out. You're like I don't know, and then talking it through helps. But once you can identify what that is, or the multiple elements of whatever that is, figuring out, what can you learn from that fear? Because fear is a very natural and beautiful, you know, aspect of our survival. So it was given to us on purpose as a very good emotion. Is fear technically an emotion or is it? I don't know whatever.
Speaker 2:We're not in psychology class, okay, so what can you learn from it? And then, what can you? I at first I thought what can you control, but then I'm like no, but see, that's the thing that makes us feel so fearful is because so much is out of our control. So maybe it's not what you can control, but what can you impact, what can you influence within that fear? Right, like I'm fearful, my child will never eat solid foods. Okay, that is a totally fair fear, you know. So what are some things that we can do today, this week, next week, to influence that fear? Is it getting speech therapy involved? Is it, you know, whatever, right? So point number one is face that gorilla.
Speaker 3:Point number two is then let's talk about what can we actually do about that fear in a massive amount of pain that led to an accidental overdose that then led to more really, really scary things, and so it was a super traumatic surgery. That was not expected. So when we were planning for her second surgery, those fears started coming back up, because I couldn't predict what was going to happen and I couldn't control it either. I was not the one who had, nor should I have been the one who had anything to do with, you know, administering her her pain medications, her anesthesia, all of those things. So it was a crippling fear at times, like to the point where I would question does she really need the surgery? And I realized I'm not questioning the surgery, I'm question. It's the fear saying I'm scared she's going to have something go wrong again and I will lose her, because we almost lost her the first time. And so what we did was faced that fear, got very clear about what it was and then, like I said, I wasn't the one to be in the OR with her. I had no control over what was given to her, but what I could do was request a pre-surgery consultation with the anesthesiologist, with the pain management team, and that's what I did, and I was able to totally review her history with them from the past surgery, explain all the things that had gone wrong and just let them know.
Speaker 3:Look, I am a very scared mom here. My daughter has been through a lot and I know that you take every case very seriously. But I am telling you her experience was very, very, very awful the last time and that 10 minute consultation with them I feel like really helped and we had such a successful outcome in our PACU experience. It was a little rough at first, but that's part of recovery, right. It was so much better than the last time. In fact it was nothing compared to the last time and just having that short conversation helped ease my fear to something that I could then move forward with. It was no longer debilitating me. It had instead served as a friend to kind of guide me, to give Emery an upper hand, you know, to give her a leg up on this next surgery, to help us have a higher chance of better outcome and better experience.
Speaker 2:That is the best example I think we could have come up with for this episode. Air five Ashton. She's in Indiana, I'm in Ohio. We're never in the same state. I love that example so much and it made about five examples pop up in my head from our own story, but I'm not going to give them because we're trying to keep these episodes short and to the point. You got the concept from Ashlyn's example. That was so perfect.
Speaker 2:So the third thing we want to talk about. So we talked about face your fear. What is it? Figure out what it is, write it down, talk about it to somebody. Whatever it is you got to do to figure out what is this fear. And then step two what can you do to impact it, influence it, what can we learn from it? And Ashlyn's example was the perfect way to help illustrate that.
Speaker 2:And then point number three is just recognizing that fear is going to be our companion in life. It's part of life and I love. Somebody once said you aren't courageous, you aren't brave, unless first you have fear, and I thought that's so beautiful and I think it goes with hope too. You don't know how to embrace hope until you've not embraced hope and you felt that all-consuming fear right and so knowing and I think that's something that has been beautiful in this journey we're six years into it now, or seven with Charlotte and learning, when that ugly head of fear rears itself in my brain, to be able to go oh I know who you are, let's talk about you, let's figure out what we can do to influence you, know whatever it is that I feel out of control with, and also let's realize like fear is going to be part of the journey for those you know, for me, with faith.
Speaker 2:I find that fear and faith, they're not absent from one another, like I don't know how many times in the Bible, ashlyn, I know it's one of the most, if not the most, repeated phrase of be not afraid, and I think that's really on purpose, because God knows like this is a huge hurdle for us, about what we can't control. And so for those who how did you say it earlier, ashlyn? How?
Speaker 3:did you say it earlier, ashlyn, you said it so beautifully of just knowing that faith comes in for us when fear can feel consuming and when we get to a point where there's so many things we can't control that. So, if you think about your fears, first address what the fear is. Two, decide what can you actually control, what steps can you take to ease those fears? And then anything else that's less, emily. You and I practice that's when we give it to God, whether it's in prayer, that's when we give it to God, whether it's in prayer, whether whatever your way of possibly counting how many times I have just had to just stop and stand in the fear for a moment and then just ask God to please just take it off of my shoulders, because I can't even release it myself. Yeah, I think that's okay. I think sometimes we're going to be in those places where we're clutching that fear so tightly because, honestly, it's the only thing we can see clearly at the time. It's really hard to imagine sometimes something better in the future. It's really hard to sometimes imagine, acknowledge the hope when you're getting hit after hit and we don't belittle that at all in this conversation. I do want to make a point that if you are listening to this conversation and it feels like we are making it overly simple to address fear, these are just really good. You know solid fundamentals that we're talking about. You know acknowledging slash, defining the fears, deciding what steps you can take and then going to your faith to release as much as you can. Those are good staples to have in your toolbox.
Speaker 3:But if you find yourself feeling like you can't breathe like all the time, or if you feel yourself just locked up in the clenches of fear, you might also be dealing with an extreme amount of anxiety. And sometimes these steps won't be enough to do that on your own, at least not for your body's sake. You know it might be a good thing to seek out mental health health or mental health. I know that that's something that I wish I had done earlier in my journey. Once I developed PTSD after Emory's first surgery. Everything was a trigger, and so I wasn't processing my fears in a clear way. These steps, although I was trying them, weren't as easy to do so with the help of mental health or mental health help to do so with the help of mental health or mental health. Help say that three times fast, right Mental health help.
Speaker 3:So with a therapist I know I've talked about my EMDR journey before, which is another great way to address fears, especially fears that are triggered by traumas from the past. And then I've even had, you know, I have had help with medication, assistance sometimes to just get myself balanced again. Because, my gosh, if you know, as the woman, if you've had the child, your hormones have been on a journey and then when you go through extreme stress that messes with all of your perfect chemical balance and sometimes you just need a little bit of help. So I'm not on here to tell you to go get on medication. That's not what I'm saying at all. But I'm also saying it's okay if you need to seek help to get a handle on it, to just take the edge off, so that you can start to look at fear through a safer filter, to start feeling like you can put some space between what you're scared of and what reality is.
Speaker 2:Yeah, and I love that you said all that, ashlyn, because if you hear anything by the end of this episode, it's to normalize. You are totally normal for navigating fear and it's totally okay to seek the help that you need to be able to navigate it to the best of your ability. And you know it's interesting too. I'm going to kind of backtrack a little bit, but I thought of this after we said our third point is, you know, giving the rest to faith. And actually it made me realize. Of course, I'm the one that was part of making this outline, ashlyn, but now that I think about it, actually that's probably step one for those who are walking in faith, like that's probably step one for those who are walking in faith, like that's probably step one is to be like, and actually I've found, um, I, I I've said many times what I like to do is prayer journaling, because I love to write, I'm a writer and it helps get things out of my head. And a lot of times I'll sit down and I'll be like I don't even know what's happening in my brain, but I know it's not good and I start writing and next thing I know I've written a prayer to God and by the end of it, I not only now know what my fear is, but now I know what I need to do next. So anyway, regardless, you get the point.
Speaker 2:Fear is totally a typical part of this journey and we want to help make sure that it doesn't consume you, but that it can help you and be a companion to supporting you, to making you know, like the great example Ashlyn shared with Emory's pre-op preparation. So with that, we want to impart courage and hope for you. We are here with you in this journey. We're here in the messy fear. We're not scared to look at it head on.
Speaker 2:You know, a lot of times when I think about Charlotte's Hope Foundation and the Empowered by Hope podcast, I just picture us sitting in that dark room. We were talking to a hospital leader the other day and she asked me tell me what inspired you to start this foundation. And before I could even think about it, ashlyn, I said what inspired me is this vision of being slumped on the hospital hallway floor beside the mom or the dad who just got that terrible news, and I'm just holding their hand and we're just sitting in the dark together and if and when they're ready, we will get up and make the next best decision right Like that. That's what we're here to do, so we're in it with you and we are just giving you all the courage and the hope and the support that we can through this podcast, so we will catch you at the next episode. You are capable, you are equipped and you are not alone.
Speaker 1:Together, we can do hard things for our children. If this episode connected with you and you want to hear more, be sure to hit the subscribe button. We would also love to learn about your personal journey and how we can support you. Reach out to us at contact at charlotteshopefoundationorg.
Speaker 2:And last but not, least if you know of someone who could benefit from this podcast, please share when hope is buried.
