Welcome to our intimate chat about the tumultuous yet enlightening journey to acceptance when parenting special needs children. We, Ashlyn Thompson and Emily Whiting, invite you to join us as we navigate the ebbs and flows of acceptance, a state that we revisit on a regular basis, supercharged with hard-earned wisdom and grace. Listen to our personal tales of the trials and triumphs that have peppered the landscape of our own journeys to acceptance, time and time again.
This episode has us candidly discussing the unique challenges and joys we encounter as parents to children with special needs. We share how redefining "normal" and seeking support from even our pets, such as Ashlyn's new puppy Letty, can provide comfort during testing times. We also delve into "mastering" the art of being your child's primary caregiver, while simultaneously grieving the dream you thought parenting would look like. As we venture further, we touch upon the importance of letting go of unrealistic expectations, the power of advocacy, and the significance of self-care, for both ourselves and our families.
Our conversation concludes on a hopeful note, underscoring the gifts of acceptance—the miraculous ability to love our children for who they are while finding joy amidst the chaos through our evolved perspective. We reflect on our personal journeys, the struggle to come to terms with our children's medical conditions, and the importance of maintaining a hopeful outlook even during challenging times. Embark on this journey with us to find understanding, comfort, and hopefully a sense of camaraderie.
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon today: https://www.amazon.com/She-Charlotte-Emotional-Spiritual-Complexities/dp/1735401994/ref=sr_1_1?crid=3B8LVR7E5PLSH&keywords=she+is+charlotte&qid=1697506854&sprefix=she+is+charlotte%2Caps%2C152&sr=8-1
Subscribe to the Empowered by Hope podcast to receive alerts about new episodes and exciting updates from Charlotte’s Hope Foundation: https://charlotteshopefoundation.org/
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Welcome to our intimate chat about the tumultuous yet enlightening journey to acceptance when parenting special needs children. We, Ashlyn Thompson and Emily Whiting, invite you to join us as we navigate the ebbs and flows of acceptance, a state that we revisit on a regular basis, supercharged with hard-earned wisdom and grace. Listen to our personal tales of the trials and triumphs that have peppered the landscape of our own journeys to acceptance, time and time again.
This episode has us candidly discussing the unique challenges and joys we encounter as parents to children with special needs. We share how redefining "normal" and seeking support from even our pets, such as Ashlyn's new puppy Letty, can provide comfort during testing times. We also delve into "mastering" the art of being your child's primary caregiver, while simultaneously grieving the dream you thought parenting would look like. As we venture further, we touch upon the importance of letting go of unrealistic expectations, the power of advocacy, and the significance of self-care, for both ourselves and our families.
Our conversation concludes on a hopeful note, underscoring the gifts of acceptance—the miraculous ability to love our children for who they are while finding joy amidst the chaos through our evolved perspective. We reflect on our personal journeys, the struggle to come to terms with our children's medical conditions, and the importance of maintaining a hopeful outlook even during challenging times. Embark on this journey with us to find understanding, comfort, and hopefully a sense of camaraderie.
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon today: https://www.amazon.com/She-Charlotte-Emotional-Spiritual-Complexities/dp/1735401994/ref=sr_1_1?crid=3B8LVR7E5PLSH&keywords=she+is+charlotte&qid=1697506854&sprefix=she+is+charlotte%2Caps%2C152&sr=8-1
Subscribe to the Empowered by Hope podcast to receive alerts about new episodes and exciting updates from Charlotte’s Hope Foundation: https://charlotteshopefoundation.org/
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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.
Speaker 2:We're so glad you found us so together we can walk this journey in hope. Welcome to the empowered by hope podcast. This morning and yes, we are recording this morning it's 6 30. I know you're going to listen to this at all kinds of different hours of the day, but we might still have frog voices. We are trying to crank out another episode before children wake up, and it has been a very intense week, so we're both like rubbing the sleepies out of our eyes while we do this.
Speaker 2:We're very excited about this and we have been thinking about this episode and talking about it for a couple of weeks now, so I think maybe even longer. It's been kind of a brewing topic that we're like this is something we really need to bring to the audience. So Ashlyn Thompson and I, emily Whiting, are here this morning today and we are going to talk about acceptance, and a few weeks ago there was an episode we aired with Lily Brown as our guest, from parent to parent, usa, where we talked about the stages of adaptation, and in that discussion there were four stages. There are four stages surviving, searching, settling in and separating and, as I was thinking about this, acceptance really is our own term for stage three, which is settling in. So we're going to dive into what does it look like when you finally kind of reach that plateau, I guess you could say, of settling in and you can kind of look behind you and see where you've been and see where you're going at least a little bit, and have a little bit of clarity and peace about it.
Speaker 2:Because I know I remember people at the beginning of our journey kind of commenting like someday this won't be as hard or someday, you know, you'll look back and treasure these moments or whatever their comment was, and thinking like there's no way, I'm caught in the storm, I'm never going to be able to, you know, be in the space of acceptance. But it's not true. You can and you will eventually and it's this constant you know back and forth of all these different stages. So it's not like you reach acceptance and then you just hang out there, but you do show up with a lot more wisdom to the other stages, right, and a lot more just, I guess, grace with yourself and ability to kind of roll with the punches. So with that, before we dive in, I know Ashlyn and I have ample examples of what we mean by acceptance, especially recently between the two of us. So we'll share that and we'll talk more about what that actually means. But really quick, ashlyn. What is going on in your world?
Speaker 1:Oh gosh. So yes, excuse the voices working on waking these up. I told Emily I feel like I need to be doing like singing warbups just to hear a normal voice, but in the world of the Thompson family. So my husband has been gone for almost a month, traveling for various things, and the children are ready for those travels to come to an end, and in true, normal Ashlyn fashion. Solo parenting didn't seem hard enough. Trying to work through my job, that has been extremely difficult for me, didn't seem hard enough, so I decided to get the puppy.
Speaker 2:And.
Speaker 1:I have to say that you know, because that's what people do in a normal situation. When life is crazy, right, they add a puppy to the mix.
Speaker 2:Actually, I think it is more common than we might think. Yes. This is not the first time I've heard somebody doing this in the middle of chaos.
Speaker 1:Yes, send us your puppy pictures please. But I have to say that everything that I hoped so far it's been a whole five days. But her name is Letty. If anybody is familiar with the Fast and Furious movie series, I have always been into that, love cars, love the whole family concept in the movies. But Letty is one of the main characters and her name actually means joy. So I thought why not just you? Know, literally insert joy into our household. That's what we're doing.
Speaker 1:And Letty has been an absolute doll. She is super sweet. She is a standard poodle. She's about 10 weeks old. She's been really, really great with the kids but honestly, she has been the best medicine for me, which you know wasn't my whole reason for getting her. But I am just so grateful that I took this step and went ahead and got her, because animals are so amazing. They just are medicine for the soul. She is so sweet just a blast. And she's a little too smart. I could have handled the dogs with slightly less intelligence, honestly, because she learned very quickly how to climb out of her pen. She even managed to bust out of one of her kennels, which I still don't know how she did that. But I have learned that if I just let her sleep in bed with me, she does great.
Speaker 2:Oh my goodness, Well sounds like a baby.
Speaker 1:Yep, exactly so. But I'm actually dropping her off at the dog trainers this afternoon and I'm going to let the trainer do the hard, like kennel training and, you know, make sure that potty training is 100 percent and all those good things, but Ledi has been a blast. If you're thinking about a puppy, my advice is always just go for it, but that's not my advice.
Speaker 1:You might want to listen to Emily before you listen to me, but no so.
Speaker 1:And then, in other news, I just wanted to say that life has been quite the roller coaster for my family for multiple reasons, and I haven't shared all of those and I may or may not in the future.
Speaker 1:But one of the lessons that has come out of all of these things truthfully from Emory, and that's what it works beautifully with what we're talking about today is acceptance.
Speaker 1:I have reached this new level of acceptance that waiting for life to become easy or telling myself that I need to be patient and wait for a stretch where things are going to be calm is almost this setting up for disappointment. And I don't mean that in a negative, pessimistic way. It's more of just a Okay, I can be realistic now and instead of looking for peace and calm in my surroundings, my environment, my circumstances, I'm learning to look for the peace and calm within myself and Realizing that I can be the calm in the storm and I I still have to weather the storm, don't get me wrong, but it is possible to get to that point to, you know, maintain that peace inside yourself, and I think that comes through the experience of being able to bounce back faster from things that knock you down. Your recovery time is shorter when you know you get the wind knocked out of you. So I'm excited to talk about acceptance today because it is quite the journey, but it's a really, really special one to be on.
Speaker 2:Yeah.
Speaker 1:Emily, what's going on in your quiet household?
Speaker 2:Quiet. That's so funny. Yeah, where to begin? Well, yes, I mean I'm so excited to launch into our content because you're so right that Waiting for life to be calm and for the storm to subside is just like constantly grasping for like the mirage Of calm that just isn't probably coming. And if it does, then we just celebrate it and appreciate it and rest in the calm Fully, knowing that it might not last very long and that's okay, but that's a new level of inner peace, really. That is just. It takes a while to attain, sometimes years, and that's okay. And when you're there, it is just like a breath of fresh air, even when you're in the midst of the storm. And storm is like the best analogy I can come up with for what we're talking about here, because it really does feel like you're just treading water and you keep getting lacked with Waves that douse you and you gasp for air again and you just keep on, keep it on, you know.
Speaker 1:So it's a worry from finding Nemo, just keep swimming, just keep swimming.
Speaker 2:That's my favorite movie ever. So After a surgery couple months ago, charlotte and I watched that movie and it was the first movie she's ever really sat and watched, because she had enough Anesthesia in her body to like keep her calm for long enough. Anyway, we got halfway through the movie and she kept going why, dad, daddy, fish? So mad. And she, she did not like it. She was like I don't, I don't want to watch this.
Speaker 1:He's so mad because he, you know, remember, he's like so upset about finding or Nemo being gone.
Speaker 2:So, anyway, okay, so what's going on in my world? Well, we are preparing for a week-long series of appointments that is going to be far away from home. So we are, I'm very grateful, very, very grateful that we have gotten the help needed to be able to really stack these Appointments because, as many of you know, we have over 20 specialists involved. Many of them want to see Charlotte every three to six months for monitoring, depending on the severity of whatever bodily function they monitor, and so, if you do the math, that is never ending Appointments, and many of you who are listening are shaking your heads in relating, you know, like, yeah, I know that's my life too. Some of you aren't, and that's okay too. Thank goodness you don't have that many appointments. That's good, but it is a constant scheduling challenge, as you can imagine, between Not even just going to the doctor We've talked about this before.
Speaker 2:You know, when you have an appointment, it is the child care for the other kids, it's the work schedule, it's Packing up the durable medical equipment to go, it's making sure we have all the treatment plans in place.
Speaker 2:You know, if it's overnight, making sure we have dog sitting, all that stuff. So I'm excited, though, because we have really Gotten the help needed to stack these appointments into one very intense week so that we only have to come about once a quarter instead of once a month, and that is going to be a huge Savings for our family, not only financially, but time, energy and stress and trauma, because Leaving your family over and over for all these appointments has presented many other challenges, so Emotionally, for the other kids, you know. So I'm really looking forward to that. I know it's going to be a grueling week, but I also know it's going to be a very productive week in Charlotte's care, and I'm hoping by the end we're going to be just really moving some mountains in some big decisions for her, like can we wean off certain medications? Can we try to figure out the root cause of certain symptoms instead of just treating them, that kind of stuff. It's probably a little ambitious of goals, but we're gonna go in with eyes wide open and hope for the best.
Speaker 1:Emily, I'm just curious. So, with it being such an intense week, do you feel like? Are you Like? One of the things I love about you is you're so good at preparing Charlotte for things. Are you having to prepare her any differently for this week, or?
Speaker 2:or not really. You know, what's interesting is a Lot of times when we go to the hospital there's a lot of alleys right and and this time, other than maybe a blood draw, I don't think there's gonna be any alleys. She's not gonna fall asleep, none of that. So the biggest prep is helping her be really at ease about it, to just be like yep, we're just gonna go talk to a bunch of doctors, you better find your favorite toys, because it's probably gonna be really boring for you. So that's been, that's been fun to be able to say that instead of being like, yep, so you're gonna fall asleep, and when you wake up you'll feel alley in your belly and you know like I'm so tired of those.
Speaker 1:No, yeah for a little, to no alleys, that is huge, I know.
Speaker 2:And then the other thing that we're just trying to navigate is and it shocked me I thought for sure our son, our four-year-old son, would want to go with us, because he's been really struggling with when we leave without him. So I was planning on taking him and leaving the baby with grandma and dad, and I ended up talking to him about it yesterday and I was like, hey, you know you can come with us, but just so you know, it's not all fun and games. We're gonna be in and out of appointments like 12 of them in four days and they're all about an hour long. So it's gonna be a lot of sitting around, a lot of being quiet, a lot of waiting for mommy to stop talking to the doctor to get Whatever it is you want, and he looks at me, he goes, I'll just stay home, like what.
Speaker 1:That's actually kind of amazing, though, like I know, he's at that point to At least be able to understand enough of that and realize maybe that's not the best Use of my time right, right.
Speaker 2:And I think when he learned there's not gonna be any alleys, that's when he was like, yeah, I don't need to go. But if he knew Charlotte was gonna be you know, a surgery or anything, I'm sure he would have been like, yeah, I'm coming, so who knows he has until he has some time to decide whether he's going or not. Charlotte was devastated that he's not coming. She was like what? But I was like, don't worry, give him some time, because he's probably gonna change his mind five times. It's fine.
Speaker 2:But I was telling my husband last night. I was like we're gonna have to give a deadline of when he has to make his official decision. I realize he's only four, so I don't want to put a ton of weight like pressure on him. But bottom line is by now, whenever, whatever time, we say like if you have decided you're staying home or you're going, that's what's happening. Because I know if he says, oh, I'm gonna stay home, and then I pack up and I get ready to leave, he's gonna be standing in the driveway sobbing, saying I want to go and like Buddy, we don't have time for that because I have to pack.
Speaker 1:I have a feeling that's gonna happen, no matter what I know.
Speaker 2:But I'm gonna at least prep him like whatever you decide by now, that's what's happening. We're not changing our minds. So anyway, that's what's happening in our world. And I will also say I was so proud of myself this week and and it's a very minor thing, but it's also a very major thing in the journey of advocacy there was something without giving a bunch of details because it doesn't matter there was something that I was convinced was gonna really help in Charlotte's care. But I also wasn't so sure that our current care team would be a fan of it and you know, old Emily would have approached the conversation saying hey. So I was thinking about this. What do you think New Emily said this week? How did I say it? I was like so this is what I see as a need for Charlotte. Here's the solution. I see that would be best. Here's the three reasons why I think it's the best. Give me if there's any reason why you think it would not be okay, let me know. Otherwise we're moving on with this and it I Robbo.
Speaker 2:I was like yes, yes, yes, new Emily, so good, and I just got the response Yep, sounds good. Let me know next steps, what you need from me, bingo, because you know, if I would have said what do you think it would have? I know it would have gone the opposite direction. So I'm getting wiser.
Speaker 1:Ashlyn, good for you yeah my manager actually at work taught me to do that. When you know just a little life lesson she's like don't ask people how they feel about things. Ask them if there's any changes they need made to what you've already done. Yes, bingo, and then move forward.
Speaker 2:Yeah, because you can just spin your wheels for days on what people want to change or tweak and I mean speaking just from a project management standpoint it can drive you to the crazy house. But especially when you're talking about medical care, you know I'm really start, especially, you know you always hear, well, your mom, you know best, and that tends to go in one ear and out the other for me Because it's like, well, I mean, yeah, but there's also all these other factors. But now it's really sinking in as such truth, because you know and I think it's truth no matter what your diagnosis is, because you are mom or dad. But in our case especially, I'm discovering like there's nine documented cases in the whole world and none of our specialists have ever even heard of this disease. So, yes, I am the expert, because I'm the one who spends days and days and days reading anything and everything I can find about it. So if I have an idea that's going to be, you know, really helpful for our care, I need to be bold about it and not sheepish, because I'm the expert, I'm it. Yes, so you are, anyway, all right. That was a really long discussion about that, but I think it was still relevant. So acceptance Well, the beautiful transition here is just accept, like lately and I think I really hit this stride about a year ago accepting the fact that I am the one who's going to know the most about Charlotte and also I am her care manager Like you know, I kept banging and I accept that to a certain degree, but like I kept banging my head against the wall waiting for the right person to come in the hospital system or medical system who is going to be able to provide that for me and it's still absolutely needed, and that's a whole nother podcast or a series of them.
Speaker 2:But when I finally just accepted the fact that, look, this is my role and I'm just going to have to step into it and fill it to the best of my ability, like life radically changed. So that's one example of acceptance from us. I know you already gave one, ashlyn. Do you want to elaborate a little more on that?
Speaker 1:So when you were just sharing what you were talking about for acceptance, I was kind of thinking back to all the way back to diagnosis time. And I just kind of want to think backwards a little bit and just share from my experience that I did not accept that for quite a while. When we got the diagnosis, when I learned what the future could look like, I would say that I was not in acceptance mode until, oh gosh, maybe a few months after her first surgery even, and I think what acceptance actually ended up ultimately looking like was truly just being able to be living in that day, in that moment. Yes, not being, I think that's what the change looked like. I don't think I was even so much aware that I was accepting things more as so much as I was settling into the. This is what it is to be.
Speaker 1:Constantly, you know, three to four steps ahead in the future Isn't really doing myself any good and it's not helping Emery. Being that far ahead Now, don't get me wrong. I mean, part of advocacy is definitely looking ahead to a certain extent, but I think if we're in that place where we're only looking ahead, then that's where the balance is starts to tip in such a you know, maybe not such a healthy way, but don't beat yourself up for being in that position either, because it takes a lot to get yourself balanced again, because there's nothing that rocks your core like anything being wrong with your child. Yeah, there's nothing like it.
Speaker 2:And if you're listening to this and you're thinking, well, good for you guys, you're in the acceptance stage. I can't even fathom what that looks like. That's totally fine, and we were there too, and we still get there sometimes, so you know what. But I think the beauty of hearing this podcast now, even if you're still in a stage where acceptance or settling in seems so out of reach, it's just a helpful reminder to know, to take a deep breath and be like I might not be there, but someday I will, and I guarantee you will, even though you probably are hearing me and being like, no, I won't, I'm never getting there, because I remember people telling me that and me and being like you don't have a clue, right, but really, and it's going to look different, it's going to be in different. You know levels and what does? What does acceptance actually mean?
Speaker 2:And I think at the beginning, what we think acceptance means and what it actually means are two different things. Like acceptance and settling in doesn't mean you're settling for less than right. Acceptance doesn't mean that you're like, oh, I'm just okay with the fact that my kid has XYZ or that they have to go through all this stuff. No, it means you've accepted that this is the reality and you've you've reached a place where you can start grappling with. I can't control a lot of things. Here's what I can control, right? And so you start figuring out what you can control and stop spinning your wheels on the things you can't. And it's okay to spin your wheels on the things you can't at first, because you don't quite know what you can control and what you can't yet. It takes a while.
Speaker 1:Yes, it does. That actually reminds me too, I think, some of our earlier podcasts. We talked a lot about the journey to redefining what okay means, redefining what hope means redefining what normal means in your life, and I think that those are all steps that take place in that journey through. Acceptance is like you said. We don't expect anybody, nor should anybody ever be happy about their child's diagnosis or medical struggles, anything like that. You're a parent, you love your child. Of course, that's not anything you would ever choose for them, but getting to that place, that realization that this is what it is as you know point blank.
Speaker 1:As that is. There's our certain truths that we cannot deny and, no matter how much our heart wants to, we cannot change them. So the best we can do is accept what is and move forward, creating that new life that we can actually work towards, that does have high quality, that does still have joy, that has any progress that we can make to. You know, give our child what we want them to have. And those dreams have definitely been altered in a lot of situations, yeah, but what you find is there's whole new levels of beauty that you weren't capable of knowing before. All of this happened. So true, yeah.
Speaker 2:So at the very beginning of my journey, I'm trying to think what did acceptance look like? Because there's varying levels of all these stages right of surviving, searching, settling in acceptance, separating throughout the whole journey but it just looks different. So at the very beginning, when I was pregnant with Charlotte, I remember this image coming to mind of like, put your two hands together with palms open and up, like you're about to catch something right, and I just kept thinking I've got to keep my hands open. And from a face standpoint, I kept thinking, okay, this feels like a really bad gift, god, or like just a cruel joke, really. But if I can reframe my thought and be like, okay, god gave me a beautiful little girl and I'm going to open my hands to that gift, because if I close my fists, he can pour out all the gifts he wants and it's just going to bounce right off my closed fists. But if I open my hands and I let him pour into those open hands, who knows where this you know gift is going to go, and that just concept, like a lot of times I would find myself, you know, shriveling inside myself over this, this horribleness that we were facing and the lack of control I had.
Speaker 2:And then I would just like take a deep breath, open your hands, open your hands to the good gifts of the Father, even though this doesn't feel good right now at all. But you have no idea where it's taking you and he sees such a bigger story than you do, right, and I can say, five years into it, I can attest, I mean, was it fun? No, would I do it again? I don't know. But it's beautiful where it has led us and I wouldn't change where it's led us at this point, I really wouldn't. So that idea of like acceptance is sometimes just opening your hands and just like, like it says, settling in, letting go a little bit of just right. Like you know, you can't control the fact that this is what you have, but you can control or you can affect how you accept it so that you can enjoy it day to day for what it is, you know.
Speaker 1:Emily, do you think that part of acceptance is coming into that knowing, if you will, that while it may not be easy, you do have what it takes. You can handle this as much as it's still difficult and challenging? Is that part of acceptance or is that a part of a different stage?
Speaker 2:Well, I think it is part of acceptance and I think a lot of it is what you said earlier realizing like if you look at the trajectory of your child's life and try to expect yourself to be able to handle it, you will crumble under that weight every time. But if you just stop and be like, okay, I got to get through today, I'm going to be the best mom or dad or caregiver I can be today, that revolutionizes everything. And sometimes, when you're in the real heat of medical survival, it a day is too much. Like I remember when we were in the NICU and people would say, just just try to get through today. I'd be like I can't handle the weight of today. Today is massive. We're talking about blood transfusions and you know all these things that like she's teetering on life and death from one minute to the next. So, no, a day is way too much.
Speaker 2:But when you're in that space, it's like, okay, one minute, what can I do? Right now? I can put my hand on her head. Well, no, I can't do that. She has EEGs on her head. Okay, I can hold her foot? Nope, can't do that because, whatever you know, okay, I can sit beside her. She knows I'm here, whatever you know. Like just changing your mindset to stop worrying about tomorrow. As much as you can, like you can let your brain go there but then be like, okay, we'll deal with that tomorrow because right now my kid needs me right now. Right, and that changes everything. When you stop trying to solve the problem, that is the next trajectory of your child's life like nobody can handle the weight of that.
Speaker 1:No, nor should you try. I know that for me, one of the examples I feel like I have of acceptance was when I finally made the choice to say yes for Emery going to London this year for that surgery. And part of that acceptance journey was accepting I can't predict the outcome of this. Part of it was accepting that there is no knowing for sure that my choice is going to be the right one. But all I can do is make decisions based on the information that I have now and pray on it and go with my gut. And I think that's another part of acceptance is coming to that realization that you're not going to know the future right.
Speaker 1:So making decisions for your child, all you can do is make the best decision at the time that you have all the resources to you, know where they lead you, what they tell you you should do, and praying on it is a big part of that for me. And also learning to move forward when I don't have. I may not be 100% confident, but I'm learning to. Instead of looking for confidence, I'm learning to look for peace yes, amen. And peace may not feel, like you know, doing some meditation on a yoga mat.
Speaker 2:No, are you kidding? Nobody's got time for that Peace may feel like that.
Speaker 1:Oh gosh, I'm trying to think how to describe it. Just for me it's almost, it's like the settling of, like my stomach not feeling like it's in so many knots. It's, it's, it's this almost like weighted feeling, but in a good way, where I all this, where I can tell I feel more grounded, I feel less like I'm flailing and more like, okay, I know what direction to point my body and essentially point Emery's body. Yeah, and that's where we move forward.
Speaker 2:Yep, that's beautiful. Yeah, and sorry, if anybody does do yoga and meditation, I am so excited for you.
Speaker 2:I didn't mean that to be brushing that off because it's very, very good and very healthy and wonderful, but yes, a lot of times, peace, you know, in the heat of this chaos, come, you know it for me, a lot of times I get peace from stopping whatever it is, you know, whatever it is that's wiggling me out at the moment, and really spending time and that could be like 10 seconds acknowledging what is it that I'm freaking out about. Is it that I think my daughter is, you know, going to forever have incontinence issues? Or my daughter, you know, whatever, fill in the blank, whatever is freaking me out, and then being like, okay, well, let's finish that thought. If that were the case, then what? It's not the end of the world, you know, and that's when it just helps a lot to get that piece of like okay, perspective. Yeah, so she might be incontinent.
Speaker 2:Incontinent, whatever. So anyway, that's one very small example, but so I'm going to give a story of recently that I think really paints the picture of being in that acceptance. And then I want to go back to when we were in the NICU, of a story that I think really rocked my world and it might rock yours too. So recently we were at the hospital for outpatient appointments. We were post-op, we had various other symptoms going on. They had nothing to do with the surgery she had, they were dealing with other bodily systems and at the end of it was two outpatient appointments and at the end I text my husband and said so. From both appointments we learned that we now need another surgery on this other system and we also need a daily intervention. That's going to take two hours every day for the next year. Add that on top of the litany of other things we're doing every day. And he texts back when are we ever going to get a break? And before I could even think, I just text back we're not.
Speaker 2:And it was such a cool moment for me as much as it might not sound like it at the surface level because it was like I said it from such a place of peace, of like we're not, we're not going to get a break and if we keep thinking that way, we're just going to drive ourselves to the grave, like from the stress of thinking we're going to get a break and never getting it. We know we have all these systems involved and it's going to affect her for the rest of her life. And I've been mourning that, especially now that we have a diagnosis and we know more of how it affects other systems that we didn't know were impacted. I mean, it makes sense and it was kind of obvious from the get go. But, like you know, your brain can only mourn so many things at once. So now my brain is mourning or was the last few months mourning the fact that we're going to be dealing with this as she's an adult as well. We're going to be dealing with this as she is. You know, if she's able to have children, what does that look like? And you know, will she pass the disease on to her kids and all that stuff.
Speaker 2:And so I've been in this space of mourning that, like I kind of tricked my brain for the last five years, thinking if we can just get her to 18, then she's going to be good, it's going to be smooth sailing. Nope, it's not. And so when I reached that space of like what, like you were saying, like stop looking for the calm, stop waiting for it to settle, it's not going to. And it was such a, I felt so proud of myself so I was like, yeah, it's not going to get easy, it's fine, this is it. So we got to. We got to figure out how to live this life and not let it tear us apart, because it's it is what it is, and that's a really relieving space to be. I'm sure if you're hearing this and you're at the beginning of the journey, it can feel like that sounds horrible.
Speaker 1:Isn't that letting go of that vice grip, right? It's releasing that death grip of trying so hard to control the uncontrollable, and it's also letting go of the idea that life is only going to be good if it goes this way. Yeah, because as soon as we do that to ourselves, we are literally setting ourselves up for failure, disappointment, heartbreak, all those things that happen in life anyway, but we're pushing out the opportunity to experience so many joys and amazing experiences that we aren't even aware are possible.
Speaker 2:Yep, yep. It comes back to that open hand concept of like, if we have a closed fist about whatever it is we're facing which I struggle with, closed fists all the time of trying to control things or trying to meet. My whole book she is Charlotte is about my letting go of control, because that's what this life forces you to. You either figure out how to let go of control or you drown in the effort to fix it, and so I mean, and you can feel when you're drowning. That sounds harsh.
Speaker 1:But no, that's not true. You can. When you're listening whoever's listening to this I guarantee you know if you are drowning, you know if you are on a life raft or you know if you're back on the ship in calmer waters. Yeah, because you feel that it's a physical experience. There's a difference that you get to physically and I don't think you can understand what that relief of acceptance feels like until it happens, but it will happen. If you're not there yet, it will.
Speaker 2:It really will. And I say you know, if you don't let go of control, you'll drown. But don't hear that listeners and think, oh my gosh, I'm going to drown. No, you won't, because this lesson will, or this life will, teach you how to let go because you have to. It's just the way this life goes. But you'll learn what to let go of and what not to.
Speaker 2:So, like, for instance, we have been in therapy, therapy, therapy, therapy. Since Charlotte was out of the womb, like literally day one. She had PT, ot, all the things, speech, and it wasn't until this summer. Our speech program ended at like August and we didn't have a next plan in place and I knew like it was in my mind. You know, like I'm going to get this worked out because we're switching to homeschool, so it changes things. It's not getting a therapist at school and our therapist at the hospital was too busy, whatever, it doesn't matter. But I'm sitting there this summer thinking like, hmm, we're going to have a few months without a therapist and it was like, yeah, we're going to be all right, it's okay. You know, and obviously people in different stages it's not okay and you need therapy right now and that's totally fine. And there's places where you reach where, yeah, you actually can defer some therapy, because maybe right now we're in a stage where her going out and playing with her siblings and hearing them speak is going to be the most helpful, and that's okay and we'll find another therapist when we find one.
Speaker 2:You know, and that was like a huge letting go for me, because you can feel as the parent, like, oh my gosh, I have to give them all these tools to make sure that they can succeed the best they can. And yes, of course you want to do that. But at a certain point you reach this kind of acknowledgement of like, yeah, I'm going to give them all the tools, but they're also going to be who they are and they're going to learn in a lot of different settings and it doesn't have to be in the structured therapy setting. Like we were registered to do hippotherapy I was so excited about it. Horse equine therapy like PT on on horseback, I was so excited about it. But I kept having this little voice in the back of my mind saying you know, she's at this stage where it doesn't have to be therapy, like, just go get horse lessons, just go play on a soccer field. Just go, let her be a kid where it's not, with therapy. On the, the headline, you know, or like the title of what?
Speaker 2:it is and I know many of you are probably listening and like, well, good for you, you're in a stage where you can do that, but it's taken us five years to get there and and you, you will reach that point where you can kind of let go and be like, yeah, if we have the opportunity to do another therapy and it fits, we'll do it, but for now we're going to seize the moment that we can just be a kid, and it might only last a moment, so let's just live it.
Speaker 1:I love that. Have you found a place to do horse riding lessons yet?
Speaker 2:Not. Yet we ended up going more of the sports route. We found this amazing program called Sporties for Shorties, because I wasn't really ready to commit to any one sport.
Speaker 1:that just sounds at least tell me that there are shirts that say that.
Speaker 2:Oh man, there aren't. That's a great idea, but it's just this gym full of three to five year olds learning how to play a variety of different sports, which is super fun, so it's awesome. Oh my gosh having a great time that is so cute. Oh yes, lots of running around and balls flying everywhere.
Speaker 1:One of the things that I wanted to bring up from an episode that we did not too long ago with Lori Zabo, who was our guest, who came on from the perspective of being a parent who, you know, she had a couple children, actually three children, who have had various medical complexities and they are all now adults in their twenties. The thing that has really stuck out to me still since we recorded that and that's been well over a month ago but when she said her best advice was to remember the best you can do is the best you can do. Yeah, and that sounds so simple and maybe a little maddening to hear depending on where you are, but I had such a aha moment when she said that and this whole settling into myself of, yeah, that really is all I am capable of doing, and we know that loving our children drives us to do the best that we can do. And I think I have accept, I'm learning to accept that, even if there are situations that I look back and I wish I had done differently. I understand now that that Ashlyn then didn't have the information I have now and there's no way I could have had that information without going through the experience. So to beat myself up, to look in the past and be frustrated or self-annihilating which I've been there, yep, amazing how cruel I can be to myself Just this acceptance that you know what at that point in time, that was all I had at my disposal and it doesn't mean that it was wrong At the time. It was the best decision. And if I've learned more since then and would do things differently, great.
Speaker 1:Now I'm more armed and equipped to handle scenarios that come up in the future. I feel better equipped to support another parent that's maybe going through that situation. But that's a really great space to be in, to have that mindset, and part of that mindset is truly getting to a place where you can be kinder to yourself. Yep, because I think you and I have talked about this a lot, emily. It is so easy. I think every parent maybe every human, I'm not sure has ample opportunities to find ways to beat themselves up to be their own worst critic. But I feel like when you're navigating this journey for your child, there's this immense amount of pressure that we blanket ourselves in, because not only are we, you know, it's not just our life, it's our child's life, it's our child's future, it's their children's future is kind of how dramatic it can get for me in my head and realizing that all we can do is take this one day at a time and I have the world's most amazing mom.
Speaker 2:That you do. That is true, yes.
Speaker 1:I do. I talk about open hands, like my mom probably wishes sometimes I would be a little less open to all her guests. I use her a lot. I think my mom might agree. Love you, mom. We have the best moms in the whole world.
Speaker 1:Yes, we're very, very fortunate, but multiple times my mom really bolstered me when I was at really low points and she's done this throughout my life. But it's probably been more meaningful for me since Emery's journey where she reminds me look, sweetheart, it is okay that this hurts, it is okay that this is hard, but the fact is, no matter what comes your way, you know you're going to handle it because you don't accept anything else. There is nothing you're going to encounter with your child where you're just going to say, all right, I can't handle this, I'm walking away. And now. That doesn't mean that there aren't moments where maybe you have to walk out of a room, maybe you need to take a weekend and get a break. Mental health breaks are extremely important. Self-care realistic self-care is important, like I got myself a puppy and she's been great for my mental health. But just there's this realization where you know it's not like anybody would choose to have a different child.
Speaker 1:Now you would definitely choose different circumstances for your child. You would choose different circumstances for your experience as a parent. For sure, who wouldn't want that? But you know that child is yours and you love them unconditionally. And at the end of the day, no matter what you face, you're going to get through it because you won't accept anything less. Yeah, yep.
Speaker 2:I actually. So this is going to get deep for a minute here when we were in the NICU, I remember well, even before. I remember just praying for radical healing. Praying for, yeah, radical healing, that's probably the best way to put it. And the day we almost lost her, she was six weeks old and it was after her fourth surgery, I think, and it was a huge surgery, huge, huge, huge. She had two blood transfusions in the OR, all the stuff, thought she had seizures, yada, yada.
Speaker 2:And I remember just coming to my knees and realizing you know what and I say this with utmost gentleness and respect and all the words I'm drawing a blank of what they are, but you'll know I came to the realization that you know what radical healing might mean that she dies and that was such a hard lesson but also such a huge letting go of like. Of course, I'm never gonna be okay with the fact that she dies. And if you're listening and you have lost your child, I am so, so sorry for your loss and we are there for you in that pain and our hearts just ache for you. And I just remember realizing, like, if I actually believe what I say, I believe, if I actually believe my kid's going to heaven, then what am I so afraid of? And if ultimate healing really means being with him and not with me, then okay. And that changed everything.
Speaker 2:When I came to that acceptance not that I'm ever going to be okay with her dying, but when I accepted the reality that she very well, may, much sooner than I would ever be okay with, it was like, alright, so I'm really gonna live in the moment now and I'm gonna stop. I mean, I can keep praying for radical healing here on earth, for sure, but I'm gonna stop hinging my life on the fact that it needs to happen or, like you know, expecting that any day. Now it's gonna be radical healing, like sure. You can pray for that absolutely. And could it happen? Yes, 100%. I just don't think that's Charlotte's story and it's probably not going to be, and that's okay. And so when you come to that realization, it's wow, profound, and it changes everything.
Speaker 1:I got chills when you're saying that, because it is so true and it is so hard to imagine that circumstance and, like you said, emily, if there's somebody who's listening who has lost a child, whether it was in pregnancy or whether it was after you've had delivered your child or any stage of life it's never something to be feeling okay about or happy about. But I know, with our belief system, that connection to God or, you know, maybe for you you just you call it just a greater power, knowing that there's more to life than what we're experiencing here. That's a part of that letting go and it's not accepting. Acceptance never means liking something and being happy about something, necessarily Like those aren't requirements to accept something. But this letting go and realizing I cannot force what I want to happen through life. I cannot control when the wind blows and when the rain falls, any more than you can control the outcome of a surgery or the effectiveness of a medication. There are so many unknowns in life and those unknowns just are magnified on this journey with our children. But I love that you brought that up, emily, because it is just, it is so true and I'm sitting here obviously thinking about it.
Speaker 1:I remember praying for radical healing for Emory. I remember almost like bargaining with God, like, okay, I know that you're probably not going to put her bladder back inside her body, but maybe she won't need the osteotomy, which is the portion of the surgery where they were going to break her pelvis essentially, and she wouldn't be able to be held for a month. Like God, maybe that part won't be there. Like I just feel really good about this. So I think it's okay that I was hopeful, but I was also realistically. I was definitely riding on the raft of denial, oh for sure.
Speaker 2:And we've all been on that river.
Speaker 1:And I think that's okay because that helped me get through for a little bit, and sometimes you just need to let your mind go there just to give it a little bit of a break from the pressure, and that's okay If we'll bring you back to reality all on its own.
Speaker 1:But I think I just want to wrap up really quick with what you just shared, emily, about that realization that healing might not happen here on earth. What that reminds me of is something that I had to work on a lot in my trauma treatment after all of Emory's circumstances. What one of the practices that we did that truthfully ended up being very healing, as hard as it was at the time was learning to literally make myself look at my biggest fear in detail yes, face the bear, you know. Literally stare down the monster that was my worst fear and talk through it and think through it, rather than constantly running from it and trying so hard to desperately not let myself think about it and doing everything I possibly could, scraping my you know, just scraping and scrambling, trying to avoid that fear that you know is in your head but you don't want to quite look at because you think it will just crush you to death.
Speaker 2:And because, subconsciously, somehow, we think, if we acknowledge it, it will become true. Why do we think that? Yes, I don't know.
Speaker 1:Exactly. I think it's just it's because we're human. Yeah, yes, that whole human condition is what a good friend of mine always calls it. Yes, you know just those shortcomings of being a human that we just, unfortunately, are saddled with. Yes, but facing that fear and I'm not saying just this you know, if that's something that you are really struggling with, that's the beauty of working with someone like a therapist or a trusted friend or another parent who has a child, with this, someone who you can feel safe with to navigate what it's like to stare down that biggest fear, because once you've acknowledged it, it cannot have the same power over you, nope.
Speaker 2:Yeah, and if you aren't ready to talk about it with anybody, one of our first products we're going to offer is a journal. We really yeah, we got to work on that, because just getting it out of your head if you can't, you know, if you don't want to talk about it with somebody, just writing it out like this is what I'm afraid of. And then writing out what would that actually look like if it happened? And the reality, like the horrible parts of it, and also maybe the parts that are like, oh, that's not as bad as I thought it would be. You know, and if you know, you're of faith in my perspective like for me, I always write it to God, like it's a letter to God my journals and that's really helpful because I'm not really just talking to myself, I'm talking it out with him. And a lot of times, if you like which, yeah, if you read my journals it always starts at the very beginning of me being like blah, this is happening and it's all horrible. And by the end it's like a total change of tone and peace and like, yeah, okay, so it's going to be all right. And so processing things, whether it's with a friend, in prayer, in journal, whatever getting it out. It's the theme of every episode we have. It seems we get back to getting it out of your head.
Speaker 2:I thought a good way to wrap up too real quick is to share from the stages of adaptation. Dr Nancy Miller came up with them and she wrote about them in her book Nobody's Perfect Living and Growing with Children who have Special Needs. I thought she just put it in such good categories of how settling in or acceptance really is, kind of these three different things, about how it affects your attitudes, your balance and your control, which is what we've been talking about. So I thought I'd rattle off a few things on this paper and we'll put the link to this in the show notes. But basically she said, settling in is a time of shifting perspective about your child's needs.
Speaker 2:You define normal, different, you start learning what your new normal is and accepting that that's okay. Like I remember at the beginning everything I was comparing to other kids, and now those are fleeting thoughts that are like yeah, well, we're not even on the scale of normal, so it's fine, we have our own normal scale and that's great. You begin to come to term with what is. You don't worry as much though you still worry. You don't have this sense of urgency that you feel like you have to spend every waking moment teaching your child or providing the right therapy or getting the right this or that or this.
Speaker 2:That's still there for sure, but you get a little bit more kind of like we'll figure it out. You begin letting go of some of the unrealistic expectations and you also know and I think this is key you know you're going to return to that searching stage where you start reactivating that frantic need to get answers. And you also know you're going to return to that survival stage of that feeling sad, guilty, frightened. You know, don't know which way to turn. You're barely living from one day to the next. But the fact is you know that and you're a little more like able to weather those stages because you know you're not going to stay there for forever. And you've kind of learned like, yeah, you know, right now we're surviving, that's okay.
Speaker 1:Someday we'll be back to acceptance, it's like you're better equipped to handle those emergencies when they come up because you've been through them. You're like, okay, I know when this happens. I need this list of things and I'm probably going to experience this, and now I have some tools in my pocket to handle it.
Speaker 2:Exactly exactly. And then the shift in balance I thought was really spot on. They're talking. She was saying how you're better able to understand what's important in the moment, and I think that's key in the moment, You're better able to understand what's important.
Speaker 2:You're going to hear some noises because children have a woken. So we're going to wrap this thing up. You start seeing your child for their total needs and you start focusing on their total needs like education, their emotional well-being, all that stuff, like the fact that we're in sporties for shorties. For the first time we're actually doing something that's not medical. It's very exciting, and so you're able to kind of think past just the medical diagnosis or the disease or whatever. And then you start kind of seeing how you know your balance changes, like some things get easier, some things get harder, but many things are just different and you start accepting that.
Speaker 2:Let's see what else. You get a little oh, this one I love. You get a little more assertive and knowledgeable with the medical professionals because you know you know a lot about this right and you just have this more just sense of like moving forward and purpose in your life. But it doesn't mean that the medical crises don't go away. And then a lot of times in this stage you're dealing with the fallout from being in the surviving and searching stages. So, like dealing with relationship challenges, marriage challenges, you start figuring out all like. This is the stage where you start figuring out how to do life after the storm has subsided, and I just wanted to share that because I thought Nancy Miller put it very well, and we'll put this link in the show notes so you can read about it yourself.
Speaker 1:To me, I think after hearing what you just read from Dr Nancy, which she sums it up beautifully, but it reminded me, I think, the greatest gift of the acceptance stage is when you get to that place where you realize my child is my child is still a child, not just the medical conditions that we are facing that my child is a child to love, to celebrate, to enjoy, to you know, just just. I mean just to love on them. They are an experience all on their own. They are a gift and no matter what comes their way, they are your child forever. You love them, just as any parent would love their child, and they were meant for you as you were meant for them.
Speaker 2:Amen, you are capable, you are equipped and you are not alone.
Speaker 1:Together, we can do hard things for our children With this episode connected with you and you want to hear more? Be sure to hit the subscribe button.
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