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
When Life Doesn’t Give You a Break with Ashley Milbourne
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Advocating for our children can be a challenge, especially when we're trying to balance strength and vulnerability. Ashley Milbourne and I share our personal experiences with navigating advocacy, expectations, and vulnerability while striving to move forward in our advocacy journeys. We also delve into the topic of trusting others with our children's care, and the importance of recognizing when outside help is needed.
Parenting can be difficult, especially when dealing with a health condition or trauma. In this episode, Ashley and I explore the significance of having a support system, finding a safe person for support, and the power of connection and solidarity when taking our children to medical appointments.
Join us as we celebrate the resilience it takes to keep pushing forward on this journey of hope.
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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
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 3:Hello and welcome to the Empowered by Hope podcast. Today it is your host, ashlyn Thompson, and unfortunately, but fortunately, at the same time, my friend, our co-host Emily, is at home with Charlotte, who is recovering very well from her surgery. That Emily had been talking about for the last few weeks. We did a recent episode on what it's like to attempt to prepare for surgery and post-op recovery time, which they are in the throes of, and so Emily is right where she needs to be with her family. But I am happy to report that, in true Charlotte form, she's rocking it. She's being so much stronger than she should have to be And Emily's just I'm just going to say it, she's a badass when it comes to all this stuff, even though she doesn't always feel like it. So just shout out to my friend who I miss, our co-host, who's amazing. But if you would send prayers or positive thoughts their way for quick healing and also just healing from the emotion of it all right, like writing out that wave and finding your way back into home, like in your head, not just being there physically, just finding your groove again, because that itself takes a toll. So send those positive thoughts their way and we look forward to having her back pretty soon.
Speaker 3:But the exciting thing for me today is that I am blessed with another very, very superstar, amazing friend And you all have gotten to hear from her before when she gave her, shared her story of hope And that is Miss Ash. Well, mrs Ashley Millbourne, and I am so, so grateful that you could join me today, ashley, because, like if some of, if you've all, been listening to the podcast, then you might recall that I talk about Ashley being the first mom I actually connected with who had a child with a similar, with the same diagnosis, which they're never exactly the same, but bladder extra fee, umbrella, right. And what was funny is we both have girls with bladder extra fee, which is already rare, and both of our girls are redheads, which is even more rare. So it's just, it was meant to be this friendship, this support system, absolutely love her And she just gosh, ashley, like I I always get a little chokey when I talk about it, but like I can literally see myself sitting on that couch like feverishly texting away on Facebook Messenger with you during like the middle of the night, because you were up still at the hospital with Mary and after her surgery, and you were just, you were my lifeline and you were the one that told me girl, it is going to be so rough, but just prepare yourself for how amazing your kid's going to be. And I'm getting chills, but it's just.
Speaker 3:Yeah, you are so special and you are so, so strong And yes, because you've had to be. But you also choose strength And that's one of the things that I really admire about you and respect you for Just. I think it's a really cool part of you that I see Like. You know, i was telling my mom the other day I was really upset about some stuff and she's like you are so strong And I was like but I don't want to be, i'm tired of having circumstances that force it. But I look at you and how you live your life And I know it's not always easy, but you are somebody who I like. You step forward into your strength and you own it, and what an amazing role model your girls have to grow up watching.
Speaker 1:So I will stop discussing about you, so that you guys can actually hear from.
Speaker 3:Ashley, and I am obsessed with her accent because, well, i'll just let her speak for herself. Why don't you say hi, ashley?
Speaker 4:Everybody. it's so good to be back on this awesome podcast. I love doing these with Ashlyn and hopefully I'll get to do one with Emily one day too. It's such an honor to be part of something that is so necessary. for us parents who have walked this journey and are still walking this journey, it does not really one that in, so it's so cool to be a part of this and I love what they're doing. And, of course, when you get to talk with one of your best friends, it's even better.
Speaker 3:So right, exactly, it definitely makes for a good day. I love being able to say I got to go work and it's. I get to pull up my computer and see your face. which is never mind I'm not going to get. I don't want to get myself in trouble with my real job, so I'm going to stop talking there.
Speaker 4:We love the real jobs too.
Speaker 3:Yes, We're thankful for the quote unquote real jobs, but anyway, another, besides just loving Ashley and having so much respect and having learned so much from you, the reason that I knew I needed to bring you on today was because I have just personally, i mean, let's face it, we if you're listening to this, you're you're likely going through a lot, especially if you are a parent or a caregiver, or even, i would say, a grandparent or a close friend or what have you.
Speaker 3:Everybody walking around, whether it's obvious or not, is always carrying so much, and you know, i kind of those invisible loads are the heaviest ones. And but I just was feeling so frustrated, but then frustrated with myself, for I felt like I was giving myself a pity party. But I was like, have I not met my quota yet? for, like, really crazy bad, can't believe this happened. Nobody's ever heard of this stuff. Like, isn't this stuff that happened with my daughter enough? Like, why, why doesn't life like hit the pause button on all this other stuff and say, okay, dear, you've been through so much, let me pad the rest of your life for a little while. And in my experience, that does not happen.
Speaker 4:And sometimes I feel like I can't handle it.
Speaker 3:Sometimes I'm like, why, like I'm? and then I feel bad and I'm like, oh my gosh, i'm being really pessimistic, or how ungrateful am I. But I don't want to. I want to break that habit of making myself wrong for having feelings, and I know that you know what it's like to get hit with so much stuff. We laugh. You know that kind of bitter, ironic laugh right.
Speaker 3:We share some of the same experiences, in addition to our second child's crazy medical journeys. So I would love to know, ashley, have you, what has your experience with that been like since having Marin?
Speaker 4:Yeah, i think you know I have a lot of the same feelings that you do And I agree with you, it's so it's almost frustrating that I do feel frustrated because everybody deals with hard stuff and I know that and you know that we, you know it's life And then, but yeah, sometimes it feels like too much and it's. You know, you can be strong and I am strong, like you said, i try to be, and you are too, and but like, sometimes it is just like all right, i'm kind of done for a little bit, like I, i want an easy way out for one time, you know, or whatever, and like that is, i think, normal to feel that way, and so I try to remind myself of that. But of course, i feel the same way you do. I get very frustrated that I'm frustrated, or you know, however you want to word that, but you know it.
Speaker 4:Especially, i will say, that was probably stronger feeling for me, maybe right after the hospital, because everything was so fresh and it was so heavy, that whole, you know, six month period, you know, from when I was hospitalized before I had Mary, until we got out of the major hospital surgery, and you know, i, i think that it comes in waves now and I don't know that that will ever stop, And that is a little you know what I mean. Like I don't know if that feels daunting or sometimes it feels a little freeing, because it's not going to be forever like this, but I do think that it is going to come in waves where it's just like enough is enough And, like you said, has. Is there not a quota on this? And I wish life worked like that. But I don't think there's a quota, because I'm pretty sure we probably would have.
Speaker 3:Yeah, I think we could have cashed that out pretty easily.
Speaker 4:Yeah, so, but it is, it's it's hard and it's hard to feel frustrated and then be frustrated that you're feeling that way because we're also so grateful on the other side that we've made it through everything that we've made it through right. So it's it's that You're grateful and you don't want to feel ungrateful and you also feel frustrated, and I think that's okay. It's a lot to balance.
Speaker 3:It is As you're saying, that what started you know what you're saying sounds a lot like kind of what I was saying, but it actually was really helpful hearing you just say that, because I feel like I like literally being on the outside looking in. What I started to pull from that was man, we really hold ourselves to high expectations. The expectations we hold of ourselves are pretty high And, like I don't expect other people to be able to keep it together when they're dealing with one of those things. I don't expect people to keep it together when they get their feelings hard at work, like you know what. I think that it's okay, i mean, it's totally normal to do that, but I wonder if part of the reason that that happens my mom told me she's like you know, as an advocate and as a parent, you get flung into this situation that requires you to.
Speaker 3:It is literally fighting for survival for your kids, for yourself, for your whole family. And even when that situation is resolved or as much as it, you know, or let's, let's say it dials down, it's really hard. I feel like to come out of that fight mode, like even like I feel like sometimes I'm looking for a fight, not like an anger way, but like something to fight for, like surely there's something that requires me to jump back into the arena and, you know, protect whoever or what or whatnot. And I'm just sitting here thinking like maybe that's part of the reason that it's we still judge ourselves for just feeling human feelings, for things that are really freaking hard.
Speaker 4:Yeah, i think too, you know when, and we've talked you've talked a lot on this podcast about advocacy and we talked about it on our last one. And you know, i think, being in that, you have to get in a certain mindset for that. I feel like, especially when it's a long term advocacy, something like what our, what our daughters have, and you know, especially with what Emily's been going through, things like that. But it's, you know, when you have to get in that advocacy mindset. It is a fight And it's kind of a battle, and you're doing the research and you're trying to keep it almost or at least this is how I've done it. I don't know if this is how you are, but try to keep it emotionless, almost Like these are the facts, here's what we want, here's what we need next, and you kind of just are, like you said, you're in survival mode And I mean, granted, while I was advocating there were tears. Don't hear it as there's no tears or power.
Speaker 4:Tears are powerful. They ended up getting us what we wanted a couple of times, But you know it's. it's that trying to separate like it's not what I want. This is what I'm doing for my daughter's medical situation or her future or whatever, And I think sometimes I have the hardest time dealing with the feelings part of it because I'm in that other mode. It's almost like you're compartmentalizing the two sides of it, right. And when I get back in that feelings mode of it, like what you're talking about, where I am feeling frustrated and kind of defeated and just kind of over the hard hardness, if you will, I think that is a really hard place for me to live. I like to be in the controlling side where I'm like doing something right, Like I'm making things happen Right.
Speaker 3:Where you're buttoned up. Yeah, it's your, i'm sure it's a lot like I mean, when you're an advocate, it's like I don't know. I mean I feel like it's like when you have to put like a totally different hat on. You have to zip yourself up and or at least you are, at least I feel like I have to like be super poised, super together, but super effective. And you know, like I mean it's just, it is so intense. But then when you're not in that mode, i think that's where the vulnerability starts to like it almost gets forced on you, right, and it's like I like feeling powerful More than I like feeling exhausted by the sadness or just the sheer disbelief that this is really what's going on.
Speaker 4:Absolutely. And you know, i think the button up feeling or whatever comes because you're talking with doctors who know a lot more than we do in a lot of cases, right, so you kind of have to fake it till you make it and be sound, button up and do your research and try to get enough understanding on your end So you know what to ask or what to say or whatever.
Speaker 4:And so I think that's kind of why we probably lean that way or why it feels like you have to be that way, but you're right, the vulnerability is on the other side and it's heavy sometimes. I mean, it can kind of be crushing, and I think that it's okay to be in that for sure and live in that space for a minute If you need to like get it out. Sometimes a good cry goes a long way with your mental state.
Speaker 4:But, like you said, then you kind of have to, like I try to say, all right, i got to be strong, like what's next steps? Like how do I get myself out of here so I don't stay in this hole, right, like it's okay to feel the feelings and they're they're true feelings, right, but then how do you get yourself from that place so that you don't stay in that place?
Speaker 3:Right, you don't want to get stuck Yeah, stuck, because that's a danger. It can be really dangerous, it can. It can be super easy, though to like just sit in that, like that gets stuck in that mud, that at least you know where you are and you know where things stand, and just the thought of the effort it takes to get out of that sometimes can feel like too much. And I think that's why it's so important to to make having a strong support system such a priority in life.
Speaker 3:Because the other thing I'm now thinking about, like when, like when I was saying at the beginning of this that you know, it feels like we've been through such huge things that when more things happen, i feel like each time something else happens. Or I wonder I'm like, would I react as intensely to this if I hadn't already gone through that? You know, would all of this be affecting me, or is this more normal stuff that I'm just, you know, i'm really sensitive to? But In addition to that, i also know that when a lot more things keep piling on, i'm very resistant to trying to. You know, tapping out and asking for help or admitting this feels like too much.
Speaker 4:Yeah, of course, absolutely. I am the first one to tell you that it's so good to ask for help or tell any of my friends like we want to help you, right, but I am the last one to ask for help too, and I kind of hate that about myself, honestly.
Speaker 3:but I just got an idea, i just got an idea. We should all put a help contact in or a help recording. Oh, that's what you could. you can send a recording asking for help for me that I can just play for people, and then I can do one for you, and so then it's like there we will just yeah, perfect. Nobody has to actually say, because that won't be awkward, being like um hold on, i need to get to this recording.
Speaker 3:I really need some help. She's having a hard time asking for it because she's been through a lot and she's really strong and I don't understand why it feels weak to want or need help. I don't understand that.
Speaker 4:I don't know either, and I will tell you, i used to think that's why I didn't want to ask for help either, and now I think I'm just kind of a control freak, maybe.
Speaker 3:Cheers to the other control freaks out there.
Speaker 4:I think my Taipei personality came out strong, especially with Marin's medical stuff. I'm like it's okay, everybody I got it. You know. Like, let me, let me take care of it. You know, i don't even know if it's a weak thing, i think it's just a. It almost is therapeutic for me to do it, maybe because I feel like I'm doing something. The feeling and the weight that goes with it is not therapeutic by any means.
Speaker 4:Right, like that's the hard part, but it's the I don't know like asking for help is really hard, And I think that my reason for not wanting to ask has changed over the years, Like I was kind of just, you know, super independent before and whatever, But now I think it's different And I think it's almost something that like I need to do And I don't think that's maybe the healthiest either, But but that's a hard spot to be in because you know, as we have learned, especially with our friendship, help and help and community, is everything right.
Speaker 4:Like you, i was helping you while you were feverishly texting me on your couch. You know, before you had an M and then you know I'm in the hospital with with Marin, trying to like get through this surgery, stay and get a lot of scary. You know points and help. Talking to you was also helping me, you know. So it's like that help If you will help us both.
Speaker 2:So why do we not?
Speaker 4:want to ask for that. It doesn't. I'm a math girl and it doesn't add up.
Speaker 3:I am not a math girl. The only type A for me is that my name starts with a, but when it comes to advocating, i will say it's funny how I know that's part of, oh, that's. I am type A, i'm type ADD, so that's my actual life. And but luckily, with ADD or ADHD whichever you classify it as I'm, i was diagnosed in the early 2000s, so we didn't have to have the H at that point. But luckily, like so with what I deal with with ADD is that when you're really passionate about something, then you are hyper focused.
Speaker 3:Everything else is going to completely fall apart, and that's why another reason you need to be okay, or I have to be okay with help. But I sometimes I think it's almost and this is not reflective on the people who can help me, but it's almost like a trust thing. It's a fear of trusting others to do it as well, as I think I'm going to, or, as you know, passionately, as I would, or effectively, or in, and I think that it's almost like a little bit of like I don't hold myself to being, or I don't think that I'm ever going to do things perfect, because I'm hard on myself, but I think I'm scared, especially with my child who goes through stuff. I'm really, really have a hard time trusting others to do what my child needs. And I will be honest and say, unfortunately and unfairly I've even been like that with my husband.
Speaker 3:Absolutely, absolutely, or my mom and she and I can see. Just see the look like I raised three of you. You're all alive. This is my second grandchild.
Speaker 4:We're doing pretty okay, yeah you're all right, you're great, you know, like it's not even like she just survived, like y'all are great people, but it is. it's a. you know, i'm the same way. I'm even with my husband, who is a fabulous father. Like I am very controlling still with it And I think a lot of it is a trust thing. Some of it is like my type A and control freak stuff, because I do it at my day job also. But you know it's harder to let go when it's your baby And you know it's, it just is. but we should work on that. No, just self. Take a note for later.
Speaker 3:We should, we should work on that. And well, i was, we actually. We are really working on that here at my home. Because, you know, this conversation kind of started with the idea of like why is more hard stuff happening? And and that's just. I mean, that is life right? Like the biggest best thing that we were ever going to do is just accept that life is going to be up and down.
Speaker 3:And I had a really good conversation with a friend this week who we were actually talking about marriage And he said you know, if you define a successful marriage as a happy marriage, you're really setting yourself up for a lot of challenges, because life has suffering in it. It's unavoidable, like it's going to happen at some point And when they're suffering, happiness cannot be, isn't going to be there in those moments. Now, what's crazy is, i think you can. You know we both agreed you can still be experiencing joy, just like you know, we thought with our girls, like when they're born. Yes, we were thrilled to have our little girls and to hear their screams and cries, no matter how many times during the night, and you know that that amazing, overpowering love was there. But there was also this really intense sadness about the situation that they had to face. And you know, carrying both of those emotions at the same time is it's challenging, It's a lot.
Speaker 4:It is Absolutely. That was a great example of that. I think you're right, that's definitely and I think that's in any relationship. You know, like you said, your marriage it's in, you know, any relationship. But if it wasn't hard it wouldn't be worth it. Maybe, i don't know if that really applies here. But you know, it's like I think your friend is totally right Like happiness isn't everything, because that you know, temporary happiness is different than you know a life full of joy, right?
Speaker 4:So like, right it's trying to find that you know working through the hard things and doing the putting the work in to get to That end goal, as opposed to just like what makes you happy right now right. I think that's pretty good. Your friend sounds pretty wise.
Speaker 3:I've got some good ones. I'm very fortunate, but I think I know just one of the things that we're trying to practice is is actually with our oldest, with coal, because so that's one of the things that's kind of stacked up here lately Not lately, it's been developing for a while, but we decided to get coal started in play therapy And, i'll be honest, i had some. We both both my husband and I, andy, you know had to chew a little bit on the idea of signing your putting your six year old in therapy, because it's like how many kids did we know who went to therapy when they were six? Granted, i look around me at some of those people who are now my age and think maybe therapy would have been good when you were six, but it still is. It just it doesn't sound typical, right? Or it's not something that when you have a kid, you're like, you know, thinking about the time they're in kindergarten. I'll be looking for a good therapist, and so it's just.
Speaker 3:It kind of honestly just felt like another kick where I was like there's already so much going on with one kid And now not only is there something else that hard that we're having to work through for him And he just needs to support like they're really. He's just had so much to adjust And he's just a six year old, is not equipped I mean because it started when he was four with his sister. Those ages are not equipped to handle that many transitions and traumas and you know, big giant life changes that really mess, you know, were super hard for us as adults, and so he just needs a little bit of help. You know, learning how to have healthy coping mechanisms, and so I can totally.
Speaker 3:We both see the good in this. Like this is great. This is going to set him up for success. We'll get there. But I find that I also carry a little bit like that lie of feeling guilty, as if it's my fault that he has this need at all, because what did we not provide enough of for him while taking care of Emory? And the fact is I literally don't think that there's anything else that we could have provided for him. The situation was going to unfold the way that it did And we did do the best we could given that time, and it's helping me to actually be leaning on my husband for a change, because I always tried to just manhandle it myself.
Speaker 3:I guess, Let me just let me get a hold of the range. Surely I can straighten things out. And it was like no, we need a team effort here. And I will say what's been pretty wild to watch is that me leaning on Andy and letting him take lead on more things with Cole has actually started to show. I'm starting to see an improvement in Cole And it's showing me that maybe I don't have to handle everything. It doesn't have to all fall on me And maybe it is actually better for others if I don't try to do it all all the time.
Speaker 4:Yeah for sure, for sure. I'm so glad to hear that You know that is making a difference, because that's probably huge for Cole to see Andy jumping in like that. You know, and I know you were with Emory, just like I was with Marin, kind of trying to do all the medical stuff and, you know, handle the appointments and everything, and not that our husbands didn't want to help or but we were just, we got it, i got it, fine, you know, whatever, How I was sometimes.
Speaker 3:I think we can almost be I don't want to say too strong, but I don't even know. I think, i think it can come across.
Speaker 4:Maybe it's hard to leave room.
Speaker 3:I think it's hard to leave room for your partner to be strong too.
Speaker 4:I agree, and it and it. I know that some of my reactions during our journey, what it probably felt really dismissive to, like telling him like I've got it, don't worry about it, and then. But I'm also stressed out and crying because I'm doing everything and that's not fair, right. So what a what a fun time that was. But but I'm so glad that you know Andy is jumping in and that it is making a difference for Cole, because that's huge. It's so funny you brought that up because, well, as you know, i was what crying to you like a month ago maybe that Nora was struggling emotionally. So we actually have her in play therapy now too, and that's why I love our friendship, because we're kind of on the same journey, you know, and it's I wasn't upset that she needed to go to therapy. I was upset, first of all, and this felt horrible, as you know, like that it was something else.
Speaker 4:It was more what felt like doctors appointments that I was going to have to you know leave work for or whatever, and you know we had already been through all this with Marin and I was like I don't. You know, it felt heavy And right something that I wanted for her.
Speaker 4:And then I also had the same thought, or you know, the other side of it was I felt guilty for feeling that way, right, like because she is my firstborn and she's only five and she's been through a lot too, and like what did I do that? Like you said, that didn't give her what she needed during this whole traumatic experience. And you know, it was such a. it was such like an up and down of feelings about everything, and you know the guilt and the just all of it.
Speaker 3:it just felt it was a lot, you know but also, did you feel better after you talked about it out loud with me, oh?
Speaker 4:absolutely. Yes, i was a whole different person after we talked.
Speaker 3:you know like I was, like she was, i was really perfected with you And I was like in one conversation that's impressive because we could have talked all about that a lot more.
Speaker 4:It was. I needed you to tell me that it wasn't my fault, because it felt like it was my fault, you know, and right it's funny we got so.
Speaker 4:For those that didn't listen to my prior podcast, i was in the hospital for essentially six months during COVID without Nora and she couldn't come to the hospital because it was COVID and hospitals were on lockdown And so I went from being basically her primary caregiver to disappearing overnight when I got hospitalized essentially, and my husband took over and he did a great job. But what a life changing night that was for Nora, right, and right to be gone that long.
Speaker 4:And you know, i kind of tell people like I think she was at that perfect age where any younger and it would have been harder and any older it would have been harder. But I think it's still affected her.
Speaker 4:So now, you know, we're we're seeing some big emotional outbursts and you know things like frustration with her little sister, and you know, of course, in my mind, i'm like, well, is this? this can't be normal five year old stuff? This is probably because I was gone for six months And I left her to go take care of Marin. And you know, like in my head, of course, i'm making it all about I guess that's kind of making it all about me, i don't. You know, like I, that was a lot for her, though, and and then, on the other hand, i'm like, well, this might be five year old stuff, because all five year olds do temper tantrums.
Speaker 3:I think that's what I told you. was that your sister?
Speaker 4:Yeah, So, but it's finding that balance And then in the end of course it's like Well, play therapy can't hurt for sure. So let's do it And see if it, you know, see if they can, you know, help her realize her feelings, because I'm a very emotional person And you know, if she got any of that from me, I feel for her Because sometimes, just, I feel very hard on both ways. I can feel very, you know, so much joy and so much sadness at the same time.
Speaker 3:But you know, I think- I love that about you, though, and I think that is such a. I think that's what makes you so dynamic and so easy to love and know, because you're just, you go for it and you don't hold back, and that's really brave as well to do that, and so I think I mean we could all work on our coping mechanism, sure, but-.
Speaker 4:Right. Well, and you know I wouldn't change that I'm emotional And I love it if she got that from me. But also I'm a 39 year old brain that tries to handle it sometimes right, and she's a five year old brain and that's a lot, and you know. So we're in that same spot you guys are in right now And it's like you know, we've kind of we've got the stuff with Mayor and the physical right Medical diagnosis And now we've got this potentially like emotional diagnosis.
Speaker 2:It's not really a diagnosis, i guess.
Speaker 4:but you know situation with Nora And I wanna tell you that's been hard just because with Mayor and it's like her bladder's out, we've got to get it back in. We gotta make sure she has your enough. you know right, like there's things and this feels very different because it is dynamic It's like, well, we don't really know right, like we don't really know what she's feeling cause she doesn't even probably know what she's feeling.
Speaker 4:So it's trying to build those coping skills. And you know, if there is any kind of you know what I've told the therapist is like if there is any kind of underlying oh what's the word? Like she's just got this underlying feelings because of what happened and because I was born, and then I wanna bring some of that to the surface so we can deal with them now, before she's 15. And that sounds like that would be way harder.
Speaker 3:Or you know in your 30s and like unpacking everything. No, i mean, you're such and I remember that was the other thing we talked about was like I remember you know you went to the classic I'm a bad mom, or like I feel like I did a bad job.
Speaker 3:And once again this is why it's so perfect is so important to have that outside cheerleader who can not only encourage you but who can present to you reality. And so I remember saying to you, like Ashley, i would not consider a mom who cares enough about her child to allow her to have the help She, like you know, needs. The fact that you're going to make time for her to have these therapies, the fact that you recognize that she needs it and you care enough to do something about it. I would never put that next to the definition of a bad mom, and it's almost like you have to. Sometimes we have to be pulled back from it because I mean, i don't know, at least once or twice a week I am nailing myself for how badly I handled something. Or, gosh, could I have done that any worse? And no wonder he has so many problems. He doesn't that sounded bad. He doesn't have so many problems, he's just he's intense.
Speaker 4:Yeah, yeah, which is going to be awesome for him when he's older. Think about that. Think about how strong he's going to be when he's older and what he's going to do with that in tenseness and the independence And he's not afraid to feel his feelings, kind of you know. So like think about how great that's going to play out for him as an adult when he's standing up for himself and getting jobs that he wants and doing all the things you know. but like it's hard as a six year old because you're trying to like also keep him rained in a little bit maybe or make sure that they're choosing ways to express that that are safe.
Speaker 4:So that's going to be, that's going to serve him well later, i'm sure, because he will have it rained in by now, then because you are getting him what he needs now, and I think that's huge. But but you're right, i needed you to tell me you're the opposite of a bad mom, and I guess I, we both know that we're not bad moms. But when you're in that moment, it is just so easy to feel like it's our fault, it's mom guilt, and you know I'm sure dads have
Speaker 4:dad guilt too, but mom guilt is like is the one I feel because I'm a mom and it is very intense, and I mean your introduction of me about how strong I am and all the things I was crying to you that I was a bad mom two weeks ago, you know, or a month ago or whatever it was Like it's. We all feel that And I think that we have to have people in our lives like I have you and you have me that will say you need to take a step back because that is not the truth. And here's why And that's all I needed I did I left our phone conversation that day a totally different mindset than I started it And I mean, I couldn't even talk to you without crying, like I was crying through the whole conversation, i think until the end.
Speaker 4:And then I was like, oh, yeah, you know. I was like, okay, i'm gonna get back to work You know, i mean I was super honored that you called me.
Speaker 3:I honestly, because I mean it just it means a lot. But I want to I think it's just really important if you're listening, whether you're somebody who's going through this, or maybe you're somebody who knows somebody who's going through this and you're listening, to learn about how to help them, really encouraging you to say it out loud to somebody else and pick the right person, of course. But I know that, like, what I start doing a lot of times is, like I said, when I get overwhelmed and I'm like I'm feeling really frustrated that there's all these things going on, but yet I'm still expecting myself to handle all of it And in my head I'm talking about it's not fair And all I'm doing I'm just building up more and more pressure inside And like it becomes physical, the experience at times, like there's been so many times where, like my chest, i'm like surely I am going to like burst into flames here any moment, but like, but saying it out loud to a safe person, somebody who I trust and have respect for, makes all the difference.
Speaker 4:Yeah, absolutely. I think that's a good point I hadn't thought about, because I do have. We both have very good villages, like we have people that love our kids and they love us and they help as much as they can you know when they can And but I think that's such a huge point Even that there's certain people that I can go to and say these things that I know aren't true, but they're really serious, like feeling like the worst mom in the world, you know or whatever it is, and like there's only certain people I think that you can be that real with and lay it all out like that.
Speaker 4:That's so vulnerable, right? Because I'm not just telling that to you so that you'd height me up. I've really felt it at the moment, right.
Speaker 3:Right.
Speaker 4:If you don't tell the right person, then you might not get exactly what you need from it. But I think it is so huge to have that someone that you share those things with, And that's why I love our friendship. Not only do we have our second born, who had this rare birth defect, but we also had another child already And we're kind of now, i think, seeing some of the things that may be stemmed from the trauma of the second child's birth and the second child's start to life right, like it's not like a one day thing and done. It was a lot for our oldest too, and the fact that we that's why I called you was you're living this too right, and I think that's just so huge And I love that. It's one of the things I love about what you guys are doing here. You're trying to connect parents that are living the same situation because they're not alone, you know it feels, lonely a lot of times, but we're not alone.
Speaker 4:And it's so worth it to put in the work to try to find someone like a, like an Ashlyn or somebody like that that can you can bounce these things off of And you can bring me back to reality a little bit, you know.
Speaker 3:Mm-hmm.
Speaker 3:Yes, and one of the things that I think is an unexpected gift from this experience is that if you haven't, like, if you haven't connected with anybody yet who is sharing, like, shares, a similar journey, or or even if they just have a child that's gone through stuff right, anything health related, these, like I feel like once you go through this, it removes the like that layer of fluff on people, right, that you have to like kind of sort through to be like, are you my people? Am I your people? Like it? just, i have found so many people who are so hungry to connect and share and lift each other up that it really is, i mean, it's, it's incredible to experience.
Speaker 3:So I'm not somebody who will walk into a room and just introduce myself to anybody, but I've found that that's changing, like when I'm in a hospital setting or you know, and I'm waiting, like you know, maybe we've got some downtime at the playground, at the hospital or in the waiting room, and I find myself feeling so much more comfortable reaching out to, you know, mom or a dad or whoever is there with their child, because I'm like I know you get it.
Speaker 4:Yeah, absolutely It's the shared experience, It's it's huge, especially a shared and I mean maybe with anything, but especially it feels like a shared experience with your baby, you know, with your child who is your, everything you know. It's so funny. I'm with you, i, i well. I used to get so embarrassed if, like my dad, talked to a stranger in the grocery store. I'd want to cry because I was so shy and I was just like.
Speaker 4:I'm not really shy anymore, but especially, like you said, like in a doctor's office or in a hospital it's I find myself talking to other parents, just because it's comforting. I think it's comforting to me And, you know, i hope that it is to them at some point too. You know, we just kind of and we're not even talking about medical stuff most of the time right. It's just like Hey, i'm, i'm here too, you. You hear a lot Cool me too.
Speaker 3:You know like whatever it is, you have a favorite seat, or? Yeah, exactly, this office has good snacks. The other one, down the hall, has better snacks.
Speaker 4:Exactly, exactly, but it's just that, like you know, solidarity, we got this. You know, like we're here.
Speaker 3:Right, we're gonna, we're gonna make it.
Speaker 3:Yes, it's, it's removed. feeling alone in a place where you are not alone, it, to me, is there are very few things that feel heavier than that, to me personally, anyway. And so when you and a lot of times it's usually only one person who can take a child to an appointment, right? So a lot of these, even if it's a low key appointment, you're still having to take your child to see somebody medical. You're not taking them to a play date, you're not taking them to a playground. That just weighs on you because, well, i think it's obvious, right?
Speaker 4:Well, and you know it's. We go regularly to our local urologist and Marin hates it there. He even jokingly introduces her as like one of his favorite. You know he'll jokingly say she's one of his favorites but she hates him That's what he tells like the resident, whoever is with him that day, because she really probably does, you know. So it's like She has a right to Right, but it's like it's not a major appointment. I'm not stressed out really about it, but she will sob the entire time we're there almost sometimes and Or while she's having her check up, and you know it's, it's still kind of draining, even though it's not a bad. Oh, we've lived. We've both lived in hospitals.
Speaker 3:Do you realize that you just described an appointment I'm sorry. Do you realize you just described an appointment where your child cries the whole time as not a bad appointment? That's when you know you've been in the game for a while. Folks, exactly, that's exactly right, that's exact.
Speaker 4:That's so true. I didn't even realize that, but yeah that's about appointment.
Speaker 3:Ashley, That's a very heavy appointment.
Speaker 4:It's about appointment, but in my mind we're going for her monthly checkup, you know. So it's like like I can go by myself. I don't need I don't need backup.
Speaker 3:But that's awesome, like I'm proud, i mean that's, it's awesome And that shows that you've gotten this point, like you. You and I want to point this out because this is important You know that like, yes, it's still a hard appointment, but what you demonstrate is that it is possible, as a parent and as an advocate, to cross that line eventually where they hard things that you have to do for your child, like the uncomfortable things, like I think she has to have a tube replaced every what? six weeks or so?
Speaker 2:That's not a fun process. Oh my gosh, four weeks.
Speaker 4:Yeah, we switched it.
Speaker 3:Oh man, but knowing that they have to do something that's going to hurt or be uncomfortable or scare them, you really can, you, you will eventually get to that place where that part of your brain, the logic in your brain, is stronger than the emotional. Yeah, can't handle this part of your brain And I think it's really like I thought I was going to freak out forever about everything. Yeah, but, but that transition does happen over time.
Speaker 4:Absolutely, it really does Cause it. It was very traumatizing to Marin, of course, and it was very traumatizing to me at first too, because I didn't know these were going to be that hard. You know, like I'm going into the first one like oh, no big deal, it's fine. And then as she got older and you know it wasn't as bad at the beginning, i actually changed her tube at home. But it's as she's gotten older she's more aware that she knows that it hurts. You know it's it's a whole thing and probably a lot mental for her too. But it is a very traumatizing appointment. But I also know as her mom, it has to be done, it's very quick. You know like this is good for her, it's just hard And so I also know that she feeds off my energy.
Speaker 4:So if I'm in there, acting like it's killing me. she is going to feed off that even more And I can't imagine how she would be crying harder than she. my redhead already is crying, but it's are you implying something about redheads crying?
Speaker 3:Absolutely am Yes.
Speaker 4:We give it all.
Speaker 3:I will say that we give it all.
Speaker 4:Marin. Marin is, she is right there with your sister, but you know it's, it's, but she's going to feed off me And so if I can try to stay calm for her now, i might want to cry when I give them the car later, because it was a particularly hard one. But if I can try to stay calm for her and love her and let her focus on me, then I think it does help. And that's not always easy, but I think that it is the more you practice it at these appointments, the easier it gets you know and and then it's
Speaker 2:over and you just hug them and don't want to let them go for a little bit, and they still love you.
Speaker 4:And you're like, okay, this is good, we're done for a whole, nother month, we don't have to do this again for a whole month.
Speaker 3:So, yes, no, I I just yeah. I was just excited to point that out because I'm just sitting here thinking about remembering like is it going to feel this painful every time? And it's not that you'll ever feel okay about it, but but it is nice to know, like have your example, ashley, that okay, i will, i will be able to handle this a little bit easier. It won't always feel quite this bad, doesn't mean you'll like it, but right you'll. you'll feel more in control of your, your emotions, absolutely.
Speaker 4:And you know it's funny, you, you pointed it out because I didn't even realize I was saying that or realized that's what I was doing. you know it just has is something that happened over time, and so I'm glad you did point it out because that's something good for everyone to hear. It's it. it does get not easy, but it gets better Maybe.
Speaker 3:Yeah, and I think you know, i think that's a fair statement that in other, you know, maybe in other parts of your life that wouldn't make any sense, but in this kind of life it does. Yeah.
Speaker 3:Absolutely, absolutely And yeah, there's all kinds of contradictions in this. You know, on the journey of a parent and caregiver for a child that's facing anything medical, It is a never ending journey, full of so many ups and downs, just like life, even if you don't have a child with medical complexities, but I. But this life definitely has its own unique intensity And there's nothing like it, Absolutely nothing like it. But today's I'm so glad we had this conversation today. Ashley, You and I have no problem talking forever, but we know that our listeners may not. You know, the laundry only lasts so long or there's only so much time between rounds with doctors and nurses, So we try to fit into that time period.
Speaker 3:But I think the takeaways today and I'm curious if you feel the same, ashley are when you're feeling overwhelmed, even when you're like past, supposedly like the big hard stuff, like surgery, right, like when just crazy things keep happening in your everyday life, it's okay to feel bad about it or upset about it, like you don't have to hold yourself to the expectation that you're only supposed to be grateful for everything. Absolutely It's okay to be upset.
Speaker 3:The second one that I got from this is asking for help in those moments. Is is a healthy step, but know yourself, because I love that you talked about. You know, sometimes you need to be the one to do it, because that actually gives you more peace and calm than not doing it. And then, oh gosh, we talked about so many things that were really helpful to me.
Speaker 4:This is why everybody.
Speaker 3:Now I'm understanding why Emily takes notes when we record podcasts and Emily's going to listen to this at some point and hopefully get a good laugh. But anyway, it was an awesome conversation. I'm so glad we had it. We hope that you out there listening got something from this, or even if you don't feel like this applies to you today, please share it. Please pass it along, because you never know who that person is in a waiting room or at a hospital bed or at home. You know for the hundredth day in a row because they can't get out of the house How much they're needing to hear something like this. So thank you for being here. We love you guys. We hope you're doing well and we'll see you next week.
Speaker 4:Bye everyone.
Speaker 2:You are capable, you are equipped and you are not alone. Together, we can do hard things for our children.
Speaker 1:If this episode connected with you and you want to hear more, be sure to hit the subscribe button.
Speaker 2:We would also love to learn about your personal journey and how we can support you. Reach out to us at contact at charlottehopefoundationorg. And last but not least, if you know of someone who could benefit from this podcast, please share. We hope it's fair.
