Do you ever feel like you’re barely surviving while raising a child with medical complexities? You’re not alone. Join us as we connect with Lily Brown from Parent to Parent USA, a parent herself, who shares her personal journey and the transformative stages of adaptation that often come with this unique role. These stages, as identified and written about in Dr. Nancy Miller's (PhD, MSW) book Nobody's Perfect: Living and Growing with Children who have Special Needs, are so very relatable to those seasoned parents of children with medical complexities. For those who are new to the journey, the stages provide context to what you're experiencing.
We kick things off by diving into the initial stage of ‘surviving.' Dr. Miller says it best in her book, "being in a state of Surviving doesn't last forever. It just seems that way at the time." One NICU mother's reflection describes it well, "there was so much grief ... It was like a death, but no one had died."
Then comes the 'searching' stage where a parent moves into action, purpose, and the quest for control. Lily shares her insights on transitioning into the ‘settling in’ stage, a calm after the storm where new routines emerge and a different sense of stability is established.
Then comes stage 4: 'separating.' Often as parents of children with medical needs, setting them up for successful independence from you comes with added obstacles and even severe limitations. We reflect on the vital role of introducing children into conversations about their medical care and its empowering effect. We emphasize the importance of recognizing our children’s capabilities, fostering their independence, and celebrating small victories in parenting.
We discuss the importance of understanding each stage, how it can offer resounding support, and provide a sense of shared experience that can fast-track bonding between parents on a similar journey. Lastly, we signpost you towards Parent to Parent USA, a resourceful compass for parents navigating similar terrains.
So, tune in, gain insights, and perhaps discover a new perspective on your journey.
For reference:
The Four Stages of Adaptation Are:
1. Surviving
2. Searching
3. Settling In
4. Seperating
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
Do you ever feel like you’re barely surviving while raising a child with medical complexities? You’re not alone. Join us as we connect with Lily Brown from Parent to Parent USA, a parent herself, who shares her personal journey and the transformative stages of adaptation that often come with this unique role. These stages, as identified and written about in Dr. Nancy Miller's (PhD, MSW) book Nobody's Perfect: Living and Growing with Children who have Special Needs, are so very relatable to those seasoned parents of children with medical complexities. For those who are new to the journey, the stages provide context to what you're experiencing.
We kick things off by diving into the initial stage of ‘surviving.' Dr. Miller says it best in her book, "being in a state of Surviving doesn't last forever. It just seems that way at the time." One NICU mother's reflection describes it well, "there was so much grief ... It was like a death, but no one had died."
Then comes the 'searching' stage where a parent moves into action, purpose, and the quest for control. Lily shares her insights on transitioning into the ‘settling in’ stage, a calm after the storm where new routines emerge and a different sense of stability is established.
Then comes stage 4: 'separating.' Often as parents of children with medical needs, setting them up for successful independence from you comes with added obstacles and even severe limitations. We reflect on the vital role of introducing children into conversations about their medical care and its empowering effect. We emphasize the importance of recognizing our children’s capabilities, fostering their independence, and celebrating small victories in parenting.
We discuss the importance of understanding each stage, how it can offer resounding support, and provide a sense of shared experience that can fast-track bonding between parents on a similar journey. Lastly, we signpost you towards Parent to Parent USA, a resourceful compass for parents navigating similar terrains.
So, tune in, gain insights, and perhaps discover a new perspective on your journey.
For reference:
The Four Stages of Adaptation Are:
1. Surviving
2. Searching
3. Settling In
4. Seperating
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, we're so glad you found us so together we can walk this journey in hope.
Speaker 2:Welcome to the empowered by hope podcast. This is Emily. Your co-host, ashlyn, is not with us today, but I am elated to have our friend Lily Brown here from Parent to Parent, usa. She has joined us once or twice by now, lily I'm trying to remember oh, once before, once before. You and I have talked several times offline, so it all merges because the conversations are very similar offline and online, so that's very fun. So obviously we absolutely adore Lily and we love what she brings to the table and her insight and her incredible work with Parent to Parent and her incredible personal experience walking this walk as a parent with a child with medical complexities.
Speaker 2:And she and I, after some previous conversations, we got to talking about this thing called the stages of adaptation and it's funny that I don't know if you brought it up or I brought it up, maybe even Ashlyn brought it up, but either way, it came up and I had to laugh because back when Ashlyn and I were brainstorming what is this foundation going to be Charlotte's Hope Foundation, and we were trying to brainstorm and do a bunch of research of what all is out there already on the internet. So we don't replace it, we only want to come alongside and bolster it, kind of like we want to partner with organizations like Parent to Parent. We never want to do what you're already doing. And so we were doing all this research and we tripped on the stages of adaptation and I remember, almost crying as I'm highlighting every sentence of the stages of adaptation, going yes, yes, yes.
Speaker 2:This is what I've experienced and it just I think the value of bringing it to our audience today and everyone listening is for those of you who have gone through the delivery of hard news for your child and you're walking that walk, or those of you who are supporting people who are going through that knowing the general stages that we each go through is very helpful because we can meet them at that stage where they are in the evolution of adaptation, right. So and Lily, I know you guys use these in these stages, in training your parent to parent. What's the term?
Speaker 3:Support parents right, that's right. Yes, in training our own staff, and then our volunteers support parents too. It's something that we want to make sure they understand about themselves and about the parents that they will support, so they know it's like you said exactly where they are and how do we meet them there.
Speaker 2:Yes, absolutely. So, before we dive into that incredible content, stay tuned. I think your jaw is going to drop as you're listening because you're going to think, oh my gosh, I've felt that and I didn't know why I was feeling it and I didn't know that it was normal. Right, like putting that understanding that this is normal. And it's interesting too, because just a couple of weeks ago we aired an episode about the stages of surgery for the parent, the things we go through as parents and the stages, and I made them up.
Speaker 2:There's no doctor behind them, like there is behind the stages of adaptation, dr Nancy Miller, like this is actually formal stages of adaptation. I just made up the stages of surgery because it's the stages I've gone through and witnessed a lot of parents going through. But I think, regardless, the point is the same that when you know, kind of, either the stages you've already been through or the stages that you might be going through soon, it just helps you take a deep breath and know that you're going to get through it and it's kind of like the stages of grief. It's a lot like the stages of grief that you just know this is totally normal to be going through these things and there is light at the other end. So before we dive in, lily, I know that of course you've been a guest before, but for those who have not listened to the previous episode, maybe you can share a little bit of your background and how we have come to be great friends.
Speaker 3:Sure, well, my background personally. I have a daughter who was born nine years ago. Her name is Susie and through a lot of research and trials we have found she has a rare genetic condition that affects her vision, muscle tone, cognition, a lot of different systems. So that's you know personally my background. I'm not just a mom, but that feels like a big part of my life. And then professionally, that brought me to parent, to parent USA.
Speaker 3:So it's the national umbrella for parent to parent programs and what we do is very simple as we match parents who have been there, have walked the walk, have the experience of raising a child with medical complexities or other special needs, to support the parents that are new on the journey. And that's how you found me and sent me your book and I read it and I thought, wow, this. You know you have a perspective that's incredible for having a child so young. I think you've gone through so much at a rapid pace that you're able to almost condense those stages in your book and it's incredible and I just I couldn't put it down. So, of course, when we talked it felt like we'd known each other forever. It did, and I think it's something that you know when you have that bond, you know, of course, our experience are very different, our families are very different, but there's something that you feel and you're like yep, I get you, you get it.
Speaker 2:We skip and Ashlyn and I have talked about this before how you kind of just skip over the formalities of building a friendship and you're just instantly connected on a very deep level, even if we still don't know a lot of the kind of topical things about each other.
Speaker 2:So that's fantastic and I love it and I wouldn't trade it for anything. And I also remember how so I was. I was finishing up writing the book and I was looking for opportunities. You know, every book has endorsements at the beginning of. You know organizations who say, yeah, this book is, is great. And so I found your name and I was like you know what I have really benefited from parent to parent and I would love nothing more than for parents to parent to, you know, for the parents to find this resource of this book. And so it led me to finding your name. And I just remember being so amazed that you and I connected. And then, you know, your excitement about the book refueled my excitement. So that was really fun and you were pointing out right before we hit record and I hadn't thought about this, but really throughout the book and the book is called she is Charlotte.
Speaker 2:If anybody's wondering what we're talking about, it's on Amazon, it's on our website, it's hopefoundationorg. But it's the story of when I first received the diagnosis for our daughter, through when she was out of the NICU, and it goes through these four stages of adaptation over and over and over in different scenarios, and I think that's what I really like about these stages it's not stagnant, it's not linear, it's not like you start in one and you get to the end and all of a sudden you're done. It's just like grief. Grief reappears, but you get better and better at navigating the stages because you've been through them and you know oh right, I'm in survival mode, I'll get through it, I won't be here for forever, so that's just an example. So I guess we should start with what are the stages of adaptation? Would you like to tackle that one, lily?
Speaker 3:Sure, so well, you brought up Dr Nancy Miller. She was a psychotherapist and a social worker, so she worked with a lot of parents who had children, maybe in the NICU, and there was a particular group of mothers she supported who ended up becoming friends. So she was able to follow them for a few years and from her experience and from hearing from those I think those four mothers, she realized well, every situation is different, every family is unique, but there are some patterns, there are some stages, and so she tried to formalize that, to say, ok, here's what we think you can expect. So you know, her book is called Nobody's Perfect Living and Growing with Children who have Special Needs. And I think the growing with children is a very interesting way to put it, because it's not just your children growing, yes, it's you too. Yes, as you go through the stages of adaptation and you become a veteran of adaptation.
Speaker 2:But to dig in. Oh, I like that term.
Speaker 3:Veteran of adaptation yes, I think that's what we are.
Speaker 2:Right, yeah, absolutely. So sorry, go ahead.
Speaker 3:You were going to say to dig in, and then I interrupted you because I was in awe of your, just to dig in to the stages the first one is surviving, the second one is searching, the third one settling in and the last one separating. So that doesn't tell you much, but we can. We could certainly go through each one if you'd like.
Speaker 2:Yes, oh, miss Charlotte just burst it in and asked if she could get her patch off for her eye. Poor kid. You can take it off right now. Go for it, girlfriend. Oh my goodness. So maybe we should dive in and start with what is surviving, like maybe, I'm thinking, if we give a really quick overview of each one and then we can go back and kind of give a few examples and dive into each. What do you think of that?
Speaker 3:Sounds good. Okay, surviving. You know, if you think about when you just receive news that you probably weren't expecting about your child, that's when you're really just reacting, so you're coping. It might feel very dark and like you're being crushed and there's not a lot of time to think. You know you just react and you keep pushing forward and everybody goes through it at their own pace. But that's surviving in a nutshell.
Speaker 2:Yes. Well, I was tempted to keep elaborating, but let's go to the next one.
Speaker 3:So searching is when you start to act in with a little bit more purpose maybe, and you're moving forward, you're trying to gain a sense of control. So there's two ways that you search. But one is the outer search. So that means you know about your child and your child's diagnosis and what you can do In the inner search. It's a little bit more complicated but it's you know. What does that mean for me and the maybe, the, my self-esteem and the image I have of my family? Those are very deep questions that people with typical children may never really have to face. But you're in there and it's thrown at you. So it's a lot of searching, soul searching.
Speaker 2:I think I love too. I highlighted where it said you know, as you're going through this searching phase, you will basically change. You will not be the same person and that's okay, and Ashlyn and I have talked about that in a few episodes, where you know you can't come through this unscathed and that's not necessarily a bad thing. No, yeah, you will be different and the searching stage can be very much like you were saying in the outer. The outer searching is, you know, trying to find the right surgeon and digging through all the answers, or you know, understanding what future life might be like and will they ever be independent, and all those things and some of those questions you're not going to get the answer to. So part of searching is learning what, what am I actually going to get the answers to and what do I need to accept that we don't know that you're still uncharted? Yeah, exactly.
Speaker 2:And we both have some daughters, with some very uncharted territory and I know many listeners are in the same boat. So yes, and so then stage three is settling in. What's a little bit more detail on that?
Speaker 3:So settling in. I think you you've done your research and now you could feel the balance is shifting a little bit. So it's it's not the, the norm that you were used to, but it's the new normal. So you have a little bit more of a sense of control, a little bit more of a routine, maybe, with your family and your life, and just it feels, yes, like more stability is here.
Speaker 1:Yeah.
Speaker 3:Yes, knowing that it doesn't take much when, even when you're settled in, to throw you back to searching or even surviving in some cases and I'm sure you know someone who is a child with medical complexities, they know it probably better than most but it doesn't take much to go right back to searching yes, yes, it's not a linear one and done trip all the way through stage four.
Speaker 2:Nope, but you get better at it. And then stage four is separating. This one is interesting because I think at first it can feel like, oh well, that doesn't happen until they're 16, 17, 18, we're getting ready for them to leave the nest, if that's even an option. Exactly, but I think that's maybe I mean yes, but it happens sooner than that too, in small stages, right? Yes, exactly.
Speaker 3:It's when you think about getting to independence and, like you said, it might look different for different children, but there are. Those are little steps that happen gradually. You know, the other day I just was in the car. I had something I needed to write down, the remember. So Susie was in the backseat getting antsy and she wanted me to unstrap her. I said, well, how about you? You know, try it yourself. And I just let her stoop for a little bit and she did it. That's amazing, that's a new skill, and all it took was finding the right moments where I thought, okay, she's strong enough, she could probably do it and just watching it happen. But you know, it's freedom for her. I don't want her to abuse it, so I have to be careful too. Right, but it's saying, you know, this is, this is a normal and this is part of getting to that independence. And it's a very small thing, but it's big.
Speaker 2:It's big. Yes, when you said that I did a little victory, pump my head.
Speaker 3:Yay, but so, yes, it seems like it's far away, but I think it's not never too early to start to think about what your approach is going to be about those things and what you can encourage, because it's going to come fast.
Speaker 2:You know, and in our last episode well, I don't know when this airs, when it will be in the series of what else was you know before but we had an interview with Lori Zabo a few weeks ago and she has children who are all out of that Well, not all, mostly out of the house and she was saying that one of the things with helping children separate and parents to adjust to that is bringing them in on the conversations you're having for them with their medical things. You know, like we're going to go see this doctor and this is what they do and this is why we're seeing them and this is how often we need to see them. And obviously, you know, for those of you tuning in, some of you are going to have different levels of abilities for children to be independent and so you know, in some cases they never really will be fully independent. But there will always be this certain level of separating that needs to happen at some point and that's going to vary for each child and each family.
Speaker 2:So but I find it very empowering to know that the separating process because you know it can at first feel like stifling, like oh my gosh, my kids going to go out of my coop and I think there's no way they're going to be able to manage all this medical stuff or whatever it is that you're. You know, first reaction is but it's not, you know, it's not like, oh, we're going to wait till they're 16 and then we're going to start teaching them how to do this. So that's really empowering, I think, and even I was giving you the example that yesterday Charlotte said look, mommy, and she was starting to pump the swing all by herself, like being able to pump on a swing, and I, of course, was a puddle of tears of joy and also heartbreak of like, oh, my gosh, my baby. But also, but look, she can pump, like she has the ability to coordinate to do that. And also having huge abdominal surgery like the fifth one, and she can do this, you know, up and down motion, and two minutes into it she goes. I'm tired.
Speaker 3:I was like I'm sure you are girlfriend.
Speaker 2:Yes, oh, but yes, it's just all these little things that kind of continually teach you to let go in different ways. So. But then I had a little funny thing. She's like I'm not going to have you push me ever again. And then two minutes later she goes can you push me? I'm tired? I'm like no, you said never again, I'm done. Of course I did people.
Speaker 3:I'm here to hold a book.
Speaker 2:Oh my gosh. Okay, so I would be willing to bet the majority of our listeners are probably when you're tuning in. You're in the first three stages for the most part right now, and I would be willing to bet. If you come to find us now, it's probably because you're in the searching stage, because you were Googling, trying to find a report for whatever situation you're facing. And I would be willing to bet and please tell me if this is not true If I'm a parent coming to parent to parent for support, I'm probably in the searching phase as well, because I'm actively looking for help. Would that be fair?
Speaker 3:Yes, sometimes even between surviving and searching right at the cusp where you think, okay, I need to do something, but I'm not sure what it is, and it's very hard when you are new to this. So finding someone who's been there, it's great if parents get to that point and find help that way.
Speaker 2:Yes, absolutely, and finding a parent who is in stage three can be such a bomb to the soul as somebody in stage one and two, somebody who's settling in and kind of has a new normalcy, and it's not all turmoil, right, it's helpful, but they still can relate and I think that's what's so valuable about parent to parent is you bring parents together who can very much relate to what somebody's going through so that it's not like you know, I think sometimes and they say it in this I'm looking at this document that outlines more of the stages, which of course we will provide in the show notes so you can look at them and have them for your own.
Speaker 2:You know reference, but it's talking about how you know your emotions are your emotions and they're valid, no matter what they are. And I think when you are a parent who's gone through these emotions, you recognize every emotion is valid, even if it feels and seems extreme to somebody from the outside looking in. It said right here. It says, quote anyone who tells you that you should not have any of these reactions has not been where you are, and isn't that so true?
Speaker 3:It is so true.
Speaker 2:Which can lead you to feeling more lonely, of course, but if you know like, okay, I'm going through a very unique situation and my support system for the most part has not been through this. It helps you I say this a lot in the book it helps you have a lot of grace with people who are trying to be there for you but don't really know how and honestly, thank God they don't know how. Right, because if they did, they would have gone through something we've gone through.
Speaker 2:But it's not the fact that you feel alone, but it's true.
Speaker 3:And then I think sometimes even something you mentioned in the book your partner might not go through those stages even at the same pace, but, understanding that, I think it helps with the grace that you're talking about and saying okay, I could see that we're not exactly in sync, but that's okay, because maybe our child needs both and maybe you know, we know, eventually we're going to come together in the end. But yes, it's something that I think shocked me.
Speaker 2:I wasn't prepared for Me neither yeah, that's such a good point and I think it took probably the first six months, maybe a year, to really recognize my partner is going to process this very differently, like he's not going to go into the searching phase nearly with the intensity that I do. And now that I think about it, well, he does go through the searching phase, but it's a very different. He's much more of the inner search, you know, goes into himself to think about things where I'm like where's the next program, where's the best doctor, what you know, give me the resources. So I'm all the outer, outer, outer, and he's more the like let's process this and think about what this actually looks like for our family and there's some great value to that.
Speaker 2:But if you don't recognize that there's the difference, it can be a huge issue between spouses and significant others to be like why aren't you searching too? It can be very frustrating, yeah, which is just a really helpful piece of knowledge for you If you're listening to this and you're thinking, yeah, my partner isn't, you know, in doing XYZ and it feels like they don't care. I highly doubt it's that they don't care. It's probably that they're in a different stage and they're handling it very differently, right? Yes, yeah, that's such good insight and I think a lot of times you know if, once you're past surviving and your partner's still in surviving, that's really hard. That's just a challenging space to be because you kind of feel like you're dragging them behind you like come on come on.
Speaker 3:Yeah, it's really hard, and I think it's part of why, when we train, support parents, we're very careful in saying you know, what's important at that stage in surviving is to have your feelings validated and without judgment. Yes, so you may think you know, I've survived, I'm good. Now I could tell you it's okay. Well, that's not going to really help. So just saying it's okay to be sad, it's okay to be angry, even and you know, let's talk about it, let's dig in a little bit more, and also not minimizing what someone is going through, because you know and that's something I don't know how you do it You're just amazing at you know, being such a veteran.
Speaker 3:When you talk about what is it? 17 surgeries, yeah, you and Charlotte have been through and yet you can hear someone else's story, you can hear someone else's struggles and you're not going to say, oh, that's nothing, you know some people would, but no, you're very good at saying you know it's a unique situation. You know, maybe I have more under my belt, but it doesn't mean that you're not struggling, and so I think that's the beauty of empowered by hope. It just it meets people where they are and I just love it.
Speaker 2:Lily, that is the best compliment you could have ever given. That's amazing, Because that's what I really hope to do and I loved. I highlighted and starred and circled. It was just saying how it doesn't matter if oh, here it is you have to begin adapting to an uncertain future. The severity or lack of severity of your child's needs does not make them any harder or easier to deal with, and I think that is so spot on.
Speaker 3:Yeah.
Speaker 2:And you know, a lot of times I'll hear parents when they reach out to me say, oh well, my child only has fill in the blank, it's nothing like what you've navigated. And I'm like, no, it is. It is your own journey and it's really hard and it's not going to help any of us if we compare and say, oh, but mine's no big deal, because it's a huge deal for you and it, then it should be and that's fine and I mean I think that touches your child as a parent.
Speaker 3:It's a universal concern.
Speaker 2:And you know what I struggle with? The same thing. I see parents who have children with a lot more severe disability than mine and severe impact on quality of life, and I struggle with the same thing of like who am I to even voice my own struggles? And so it's. I think we all battle with that comparison piece, and so just recognizing it doesn't matter really. Like I said so well, the severity or lack of severity of your child's needs, regardless, it has affected your child and your child is an extension of your heart and an extension of your body, and so it very much affects you personally, right? Yes, yeah. So surviving, I think one of the things that I've learned in survival mode and I go there, I mean every surgery we go into I know I'm going to be in survival for at least a month afterwards.
Speaker 2:There's you know, and that's just the way it is. And when we receive new diagnoses, I'm going to be, you know, thrown back into survival, of just kind of processing that sitting in the grief of it, letting it, you know, bring on the feelings of guilt and shock and stress and anger and denial and all those things, and then knowing that this is totally normal. And one thing that it talks about in this document that I really love is saying how you really need to use your support system. And I think that's something we hit very heavy head on at the very beginning of our episodes with empowered by hope is your support system. If you don't have one, ideas how to create one and if you do have one, to really lean into them and accept help, because there's no need to do anything other than survive when you're in the surviving stage, right.
Speaker 3:And it's hard to ask or accept the help. But I think you know you get better.
Speaker 2:Yeah, it's very humbling. One of the most humbling experiences is to say yes when people ask if they can help, because we want to be like oh no, I'm okay.
Speaker 3:It's all right.
Speaker 2:Yeah, I got it. I don't want to inconvenience you and also I'm strong enough I can handle it.
Speaker 2:I mean, we don't actually say all those things out loud, but that's what happens in our head, right, but I have found the most freedom in being like you know what? Yep, I can't handle this Absolutely. You can get me groceries yes. You can bring me a meal yes, I can help with childcare. Whatever you offer, I'm going to say yes. So don't offer unless you mean it, I love it Anything else you want to share on the surviving stage before we move forward, and, honestly, we could do entire. We were talking earlier. We could do entire episodes on each stage.
Speaker 3:I mean very well, may later, but um, no, I think just to, maybe if someone's listening and they're they haven't lived it themselves but they're hoping to help someone, just to understand the toll that it could take on someone I knowing that there are actually articles out there that compare that stress to PTSD, yes, or you know and say you know the the reaction from sustained, repeated trauma. They have measured it in parents who have children with special healthcare needs. Um, yeah, so I think that's important to remember. It's deep and it's heavy.
Speaker 2:It is yes, absolutely yes. There's so much more I wanna say on that, but I'll let it be what it is. I loved here too. There's a quote from a mother from the NICU who said "'It was like a death, but no one had died'". And isn't that so true. It feels like you're mourning, and then, of course, you have the guilt that comes with that of like. Well, why am I mourning? My child is alive and beautiful, but you're still mourning because you're mourning the death of the child and the childhood and the life that you envisioned for that child and for your family, right?
Speaker 2:So okay, but you don't have to stay in survival. We do eventually get to searching, and searching is a very empowering it's supposed to be sorry there is a lot of noise from my children in the background, but they are having a great time acting like pirates. So Charlotte has been diagnosed with this lazy eye and she has to wear a patch two hours a day for like the next year. So just add it on to the things to do, but anyway.
Speaker 2:so Ashlyn actually rush shipped us pirate patches so that all the kids could run around and pretend like they're pirates and they're having a great time Perfect. So we love Ashlyn for all of her creative ideas. So searching, I guess in this stage it kind of it says it really well. It awakens the sense of control over your emotions in your life and it can become a little bit all consuming and a little bit unhealthy. Speaking candid from myself, yeah right.
Speaker 2:A little tea here too? Yes, yep, but I think it's all part of the journey of getting to settling in, right, is you kind of start reaching and grasping for knowledge and insight and understanding so that you can really try to figure out how do I make this a new normal? So tell me, yeah, what's your personal experience in this searching phase, cause I know you've been through it several times.
Speaker 3:Well, the fun fact is, even before I had Susie, people nicknamed me the digger cause. I like to search, I like to do research and I'll be at the library, I'll be online, whatever means I want to find the answers. So I completely relate to being all consuming. But yeah, I think for me what I've learned is you could search and search and search and ask what if? And to some extent it's really good to have the knowledge and then there's a point where, especially for rare diseases, where there's not really a clear, charted path, it's counterproductive. So you could either look at the worst case scenario or you could just worry about things that may or may not happen. So for me, that's where I know, okay, I need to just pull back and say what's the next immediate step? Do I need a specialist? Or if I need one in a couple of years, then well, I set a reminder and just try and leave it there.
Speaker 2:Yeah, so that's great, yes, and I think it's hard. The beauty of what you just shared is that being that self-awareness of letting you will know when it's too much and it's unhealthy, you really will.
Speaker 2:Your body will tell you, your brain will tell you Warnings will be going off, yeah, and so allowing that to be a good thing and to be like, okay, I've done enough searching and now it's time to move forward with whatever it is that I've learned or I mean the best example I can come up with it's very recent is I got seven yes, seven opinions around the globe before we did this last surgery for Charlotte. There's not even that many urologists in the United States and world out there available for pediatrics and I consulted with seven of them. Wow. So at this point, like the whole urology community knows about Charlotte's case, probably, but I was kind of in this place feeling very powerless about what we were facing and feeling very unhappy with the options that I had in front of me. Like I don't really like any of these options, so surely there's a better one out there. It turns out there's not a better one out there, but it did help me.
Speaker 2:Because of all that research, I was able to go to settle in because I was like, okay, well, I don't love any of these options, but I can sleep good at night because I know I've done my homework and there really was no better option out there. Now, I'm not saying anybody should go out there and do seven opinions First off, it's expensive, second off, it's a lot of time, a lot of stress, and two is sufficient. But I think sometimes you, your brain and your heart, you just need that. You know, and, honestly, it wasn't until the seventh one said Emily, this is the right direction for you. That I was like, all right, fine. But I think sometimes, just like listening to yourself, if you're still feeling like you need to search, then by all means search, but do it in a way that you know, once you reach that point where you're like, okay, this is unhealthy, it's time to pull back, right?
Speaker 3:Yes, and for me sometimes it's saying, okay, well, I'm gonna stop, you know, googling things and reading articles and I'm gonna go back to my trusted two or three families that I know are very close, have a similar path and okay, just be my little window into the future, just give me a couple of resources and maybe that's all I need for now. Yeah, so, yeah, yeah sometimes, but I can understand that there's something in the back of your mind that won't let you leave something as stone unturned. Right, it's like I would do anything for my child, so Right yeah my husband often reminds me.
Speaker 2:Yeah, he's like don't let things go, do you?
Speaker 3:No, I do not.
Speaker 2:No, I love this quote. It says you're searching will show you there is no perfect program, infallible intervention or quick cure, and that's a painful reality and it's mourning all over again about that. But once you kind of recognize that it helps, you start picking okay, well, what are our best options among the ones that aren't great, you know, or aren't infallible? I like that, that's the word they used. It also shares how you'll learn what to. You'll start recognizing what you can control and focus on those things rather than focusing on the things that you can't. And I thought that was really fantastic because, gosh, how many things do I realize, like I can't control, that her body does XYZ. What I can control is that we provide, you know, this intervention. That's going to be the most helpful till we learn something else or whatever.
Speaker 2:So, and then eventually you get to realizing from all that searching that you know your life's going to be different than you planned, and that different maybe isn't all that bad right.
Speaker 3:No, and that's part of the inner search. There's a quote from a French author. He has a daughter with Down syndrome and I hope I do it justice. He's had to translate it, but it just I thought it was so beautiful. He said on the ashes of our egos will grow a tree even more beautiful than we could have dreamed.
Speaker 2:Oh my goodness, I love that. I think it really illustrates that you know.
Speaker 3:Yes, this crushes you to the core, but you come back, you know, out of it and you're going to be more resilient, maybe more compassionate, but there are positives, you know, can be more determined and maybe grateful too in the end. But it's you know, it's the reality of it, is it? It is really hard, it is.
Speaker 2:And if you heard that quote and your initial reaction was like, oh, that's so beautiful, you know, that's great. And if you heard that quote and your initial reaction was like, yeah, but this is so hard, don't tell me I'm going to grow a tree out of my ashes, because I'm in the ashes like, that's fair too. Live there, it's okay. You know, all those reactions are totally valid and I think you know, depending on what stage you're in, you have all the different reactions and but it's so true. I think it's so hard to hear. And this is where the fine line of talking about hope can be challenging, because it's like, when you're in this hopeless space at the very beginning, it's really frustrating. When people are talking to you about hope right, because you're like, but it also you need the door to crack, you know, a little bit of light to come in, so that you might not be there yet, but you know you will and there is hope and you're. You know it's going to be okay, but it's going to be different. It's going to be very different than what you thought. Okay was I talk about that a lot in the book of.
Speaker 2:Like you know, at the beginning of our diagnosis, I was adamant that I, you know, my whole goal was healing, healing, healing like complete, miraculous healing. I wanted to be completely healthy and that's my goal and it didn't. It wasn't until probably month three of her being out of the womb that I came to the realization that, like, that's probably not a realistic goal. First off, and that's okay. Like she, you know, when I, when I redefine what is the definition of healing to one that's actually more attainable and reasonable, life gets a lot better, you know.
Speaker 3:Wow.
Speaker 2:And a lot more easy to then look the issues in the eye and be like, okay, we're not going to have miraculous healing, Probably. Maybe it's possible we're leaving the doors open for that but it's more likely that we're going to have to navigate this one step at a time.
Speaker 3:And so what?
Speaker 2:is the next step, right, so, yes, and so I love how, when we switch to stage three, it really is a shifting of your perspective about your child's needs, and that's really what we're talking about, right, you go from this searching, searching, grasping, grasping to now shifting to be like okay, this is our new reality, I have a lot more knowledge now to know how to navigate it, and now we're going to start to set a new normal. That doesn't look anything like what I thought it was going to, but that's okay too.
Speaker 3:Mm-hmm and I think you're. You know you're not saying I'm done. You know challenges will come, but you know you're equipped and you know you could say you know we'll deal with it when we're there, but right now life is, you know, life is stable, we're good, yeah.
Speaker 2:And you get to a point too, if you keep getting dipped back into, like in our case, we keep going, surgery after surgery and we have, you know, five to 10 more coming. So I know we're going to go through this over and over and over, yes, but you get to a point where you kind of start accepting and celebrating we're in a settling in phase. That's beautiful, and I know we're going to crash and burn out of it at some point, but that's okay, because we'll get back to settling in, it'll be all right. You know it can be depressing, but it also is very liberating. And I would say we're in this stage right now.
Speaker 2:You know we were in the heavy searching before surgery and even after a little bit trying to figure out how to live with what we have going on now and now we're really trying to figure out okay, how do we adjust to this new normal, because it's going to be our normal for the foreseeable future and it's really a fun space to be in. You feel like you can breathe again. You know yes, exactly, Something's lifted.
Speaker 3:Yes, yeah, and that's why we try to encourage our volunteers to be there too. You know, for parents, when they get to that stage and say there's a temptation, maybe when things are good, you say, okay, what's the next milestone? You know, yes, let's keep pushing because we feel like we have to catch up, or at least I feel like we have to catch up, Me too. But the idea is, you know, someone who's been there can tell you wait, wait, wait. Can we pause one second? And, okay, tell me again, did she just pump her legs? Honestly, Can we just stop and celebrate that for a little bit? And you know it's a victory. Yes, can we just relish, you know, for a little bit. And I think having someone there with you to help point those out, that's a beautiful thing.
Speaker 2:It's so beautiful. Oh, I'm so glad you said that and I think we, because we're so trained that we're supposed to do all these things for our kids, to help them. You know, flourish to the best of their ability. When you get to the settling in phase, it's easy for you to start thinking, oh my gosh, I'm not doing enough.
Speaker 3:Oh, my gosh.
Speaker 2:I'm falling behind, I'm letting my child down, I'm starting to relax too much, right, which I mean there's probably some merit to that little voice to be like, okay, don't forget, you do have to actually schedule all those follow ups, but also, like you said, hushing it every once in a while and being like let's just relish. She's pumping, she's swinging you know or? She's unbuckling her own seat. We're just going to sit in that for a day and be really excited.
Speaker 3:Yes, and you need someone who understands that those aren't just typical milestones. You understand, this is a big deal, yes, so that's, I think that's what we have in common in our experience, and that's why it clicks is because aha, you see it too.
Speaker 2:Yes, oh yeah. I know I love sharing with like. When I shared with you before we logged on and started recording, I was sharing how Charlotte started pumping her own swing and your face lit up so bright. And it just overdoied me because I was like she gets it, she knows how big that is. Oh, yes, we worked on that too, among other things. But yes, it's huge. And now Susie and Charlotte are going to be besties on the swing.
Speaker 3:They're going to be Olympic swingers.
Speaker 2:That's awesome, oh my gosh. I love too. It says here, you know you start shifting in your balance of your focus, and it says your child's total needs have become your focus and not just the disability. And I love that because I find myself you know we're in this stage and this is so the reality for us. Right now.
Speaker 2:I'm shifting my focus from what are we going to do for urology, how are we going to make that function? You know all that too. Okay, what's the school season going to look like? You know? Do we even need therapy or do we need a year off for her to just be a kid? I start like getting a lot more big picture and not just so, task, task, task. And so, if you're in the survival or the searching stage, I just want you to hear that and know you will eventually get to that space where you can think of your child. I'm going to use the word holistically, although I know that carries a whole different meaning. I actually, I think I said in a previous podcast with you I had told a pediatrician I'm looking for a holistic doctor, and they were like no you're not, that's not what you're looking for, so I misused that term.
Speaker 2:Anyway, somebody who you know looking at the entire child, her whole life, his whole life, and that's a really beautiful space to be in and one that's liberating because, you know, sans disabilities or diagnoses, that's how you would probably be approaching parenting, so it's like it feels like you're kind of in your groove and that's it's fun, in my opinion. Oh, yes, so okay, I'm trying to think what else we need to say about that stage before we move on. Is there anything else you can think of?
Speaker 3:Yeah, well, just another example for me was it's the stage where maybe you feel like you need a little bit less support. But I remember a pediatrician we had and you know I was pushing for therapies and things, because the school year is going to end and what is it going to look like, and she said no, you know, I think she's worked hard, she needs break, and just having someone else give you that permission it goes a long way. So, you know, if you ever are in this situation where and you know it's beneficial, you know, for the family and for the child, of course if you're ever, you know, empowered enough to say, well, think about it. Is this, is this really necessary right now, or can we maybe take a break? That was for me. That's what I needed to hear, because on my own I probably wouldn't have thought about it.
Speaker 2:No, and as the mom, I don't want to put words in your mouth, but my reaction you know I don't. So I don't want to assume this was yours, but you kind of feel like well, to be a good mom, I need to sign her up for all these things. And so then, when a doctor looks you in the eye and says you know she needs a break, so if you're ready for that, that's fine it's like, oh, okay.
Speaker 3:It's such a relief.
Speaker 2:Yes, and I don't have to feel guilty about it because somebody else told me so we're good, Exactly, I love it and also, you know, if you're listening to this and you're in the first few months or years of your journey and you're like good for you, you guys have the luxury of like taking a pause. We hear you because both of us have been there too?
Speaker 2:Neither one you know. But again, I think it's really good to hear that. You know, sometimes you don't have to be signed up for all these therapies and summer camps and this and that, and you know this latest and greatest program, and sometimes it's just like you know. We are definitely in a stage now where I have come to realize we need to pump the brakes, because we have gotten her to a place of she can survive and possibly even thrive at the moment she's in. Now we still have five to 10 surgeries to go. Yes, we still have 20,. You know specialists involved. Yes, we still are in out of the hospital every month.
Speaker 2:Yes, but now is the time I need to just let her be a kid for my own sanity too, Because I'm watching our family struggle as we're in and out of all these different things and it's like you know what Our whole family needs to take a deep breath, even if it's only for two months.
Speaker 3:So that's what we're going to do we're taking deep breaths, and that is so true in something that we, you know I don't. I only have Susie, so she has a only child syndrome.
Speaker 2:But for beautiful, only child syndrome.
Speaker 3:She knows how to work. But you know it, for you and for listeners who have children, you know, who have siblings, it's a very important time to to make room for the siblings because it's it's really easy To focus on your child with the most needs. But when things settle, you know it's very important to make this priority and there's some great programs out there for siblings sip shops and things like that that you can explore. But even just saying, okay, this summer we're all you know the kids are going to be kids. I think it's huge and it's something they're going to remember.
Speaker 2:Yeah, we're going to go to the zoo, we're going to take the opportunity to do whatever it is within the limitations that we have that we can do as a family to just try to be a family. You know, in the midst of all this, I love that, yeah, and I have found, when you get into the and this might be different across families, but for us, when we get into the settling in phase, that's when the siblings emotions and needs become glaring and, honestly, like you, can't ignore them because it gets so loud, because they have also been in survival.
Speaker 2:I don't know about searching, probably, but you know, searching for answers of why is mom always so stressed and why are my parents constantly leaving and why is my sister always in pain, and you know all those things. And then we finally get to settling in and it's like they crumble and so I'm grateful for that opportunity to now. I said in our stages of surgery podcast, it's like the cleanup phase. You're cleaning up the mess that happened from the survival and from the searching because there's always a mess left behind in my life anyway.
Speaker 2:So, yeah, so stage four is separating and I think really it says it well where it says it's never too early to begin thinking about the life you want for your child and starting to build the dream that is your child's future. And, like I said, I doubt many of us are intensely in this stage yet because of just the target audience we've aimed to reach. Before you are really fully engrossed in this stage, it's helpful to know that you will eventually get there and to just remember. I think it helps kind of pull us out of the minute, day to day management of it all and just be like okay, we are raising humans not just for their childhood but for the entirety of their life if they are blessed to live past childhood right and I say that with the utmost humility and recognition, knowing that some of our listeners that's not going to be the case, and so I love how it says.
Speaker 2:This stage of letting go is it feels like you're losing something and you are. There's no point in pretending that it's not going to leave an empty space in your life. I couldn't have said it better. It's like each time they learn a new milestone of unbuckling their seat. You celebrate and you also feel a loss.
Speaker 3:You feel like the slow pulling away of the child, and it's a beautiful and painful thing, yes, and while I was talking about it with my husband this morning and he said well, remember how I used to take Susie to school on my bike with a little trailer.
Speaker 3:And then one day we realized well, she can walk and now she has an adapted bike. So she goes on the adapted bike and you lose a little something every stage. But it's great to see her grow too. And I think, recognizing that, even if you're not there yet, that because you are blurring the lines between being a parent and a caregiver, really you're pouring everything into supporting your child, just being conscious that it might take a little bit more effort to separate, if that's all you take away from that stage because you're not ready to look that far ahead. I think that's important because then, as opportunities come up to do little things like I don't know what would you like to wear today, out there A or out there B you can encourage the child to take those steps to make a choice. You make a decision, even if it's the smallest decision, but get them ready to gain that independence gradually.
Speaker 2:Yes, absolutely. I love that. Yeah, I think about some specific things that do to medical challenges. Developmentally, charlotte is absolutely ready to do some things, but because of medical challenges I still do them and I have been battling in my head lately I should probably, even though it's not going to be perfect and it might even lead to an infection and whatever. But I need to let her try to change the bandage. I need to let her try to do the catheter herself that kind of stuff to like she's cognizant, she can do it and I bet if she got to do it she would own it more and appreciate it more. And it hurts a little bit to have her do that because I want the control to know.
Speaker 2:Well, I did wash my hands before I did it and I did it really well with the antiseptic wipe, and so I know if she got an infection it's not from that. But you know what I got to let it go sometimes. Let it go. Let it go so anyway, obviously only within reason, things that are not life and death. But no, of course not. Oh jeez, so hard. Anything else you want to say on that last stage, before we kind of wrap it up?
Speaker 3:One thing for me that I had to learn because I wasn't sure what Susie's capabilities were going to be presumed competence, and it sounds simple but there are things that I didn't even try because I thought I don't think she can do it or it'll be faster for me to do it. And we were so fortunate when she entered kindergarten not for the circumstances, because it was 2020. So the first day of school, before the kids even walked into school, they taught airplane arms. So, you know, stand at a distance from each other, oh my gosh. And airplane arms was their way of saying arms length. So the kids would remember, you know, no hugs, nothing like that. And they had to wear a mask. So I put it on, because she already wears glasses and her fine motor wasn't so good. So I thought there's no way.
Speaker 3:Well, a week later, the teacher comes out and she says you know, I practiced with her a couple of times and she's got it, she's good, she doesn't need you to put the mask on. And I was floored and I felt so guilty, of course, but so proud, but also like, wow, why did I not even try? You know, yeah, I have to remind myself of periodically, just like and it's hard when you don't have the typical child milestones. So, you know, around this age, that's what you can expect. You know, that's not there for us. So when is a good time to try, when is a good time to push? It's trial and error. It is big trial and error, but remembering that it helps me, I think, to push towards more independence rather than be content with what is. And you know I'm not going to be able to do all those things for her forever.
Speaker 2:Yeah, that's such a good example and I love how you were vulnerable to share that. You felt guilty too, because of course you did, but I also love that you know this journey is so, if you let it be. It is so such a humbling in the best of ways journey to be able to, instead of receive that teacher's comments as like, oh my gosh, I'm a horrible parent, but to then turn that and be like, actually, no, this was a good learning curve. Now I'm going to try to let her be more independent and let it be a lesson and we don't feel guilty about it.
Speaker 3:No, and huge credit to this teacher who you know she had probably 17, 19 other kids to handle in kindergarten, their first year. Everything was kind of different, In the midst of COVID, To say the least. Yes, and she took the time and she didn't say, oh okay, well, I don't know. She just presumed like, yeah, she could put her mask on like any other child and I love that, I just I love her.
Speaker 2:Yes, and sometimes having an outside individual who's not quite as attached to your history and diagnosis and things can be really helpful for that exact reason.
Speaker 2:Yeah, yeah, and I can pull you out of I don't know. Just there's no preset expectations, so that's can be really helpful. Okay, so we I can hear the kids knocking down the door, so I am, my little pirates are about to bombard the ship. So this is like we say in every episode. This is the risk of recording any other time besides 5am. So the stages of adaptation are by Dr Nancy Miller.
Speaker 2:We will definitely provide a link in the show notes and just so you know, to recap, the stages are surviving, searching, settling in and separating, and you know we might go into more elaborate detail in future episodes, but I think this is a great start to help familiarize yourself. And I bet as you were listening, you were thinking oh my gosh, I've been in this stage, or I'm currently in this one, or I'm in both of the. I have one foot and both at the moment, and that's totally, totally normal too. So I would love to hear from you if you're listening to this and anything struck, you reach out to us at contact at charlotte'shopefoundationorg. And Lily, how can they find parents of parent USA and their local chapters?
Speaker 3:So parent to parent USA. If you go to p2pusaorg, so it's P, the number two P, usaorg slash parents. There's a map of the United States and you can find your state. And if there's a program in your state, just hover and click on it. It'll take you to their website. If there is no parent to parent in your state yet, you can contact a neighboring state or just drop us a line at parent to parent USA and we'll be happy to connect you with someone.
Speaker 2:I have found parent to parent to be very responsive and their website fantastic to use. So that's awesome. So definitely, if you're listening and you would like to be paired with a parent, you would like to learn more about what parent to parent USA is all about. Check out their website, reach out to them. It's a phenomenal program and we're just elated, lily, that you spent the time with us today. Thank you so much for this incredible conversation.
Speaker 2:I can't wait to share in the show notes these stages. I know you also use these stages. I actually have the support parent training program like booklet in front of me that I did through parent to parent Ohio a few years ago, and on page 36 is the four stages of adaptation and I remember during the training reading this and going, oh my goodness, that's so helpful because then when I go to be there for other parents, I can recognize oh, they're in the survival stage, so don't start talking to them about you know other things, because they're just trying to survive. So meet them in that space, recognize their emotions are totally valid. You know it was just a very helpful resource. So I definitely encourage all you listeners if you would like to reach out to parent to parent and find your local chapter. You won't regret it. So thank you, lily, for your time.
Speaker 2:And we, I think we are going to have you possibly rejoin us to talk about. Well, you tell them what we're going to talk about, because you came up with the awesome idea.
Speaker 3:Oh, okay, well, I, you know I wanted to encourage people to do something for themselves, and there are great thought leaders out there for self care, for mental health. But I thought what I could contribute in if that's of interest but you know, let us know who want to hear your feedback is some I call them brutally practical tools. So maybe share a few things that have helped me on this journey, just to make the day to day a little bit easier and not, you know, wake up at three in the morning and think, oh, my goodness, what am I going to do? What's next? Why is there a million things in my mind? And, wait, my child is actually sleeping right now and I'm awake. That does not make any sense, right? This is what I need to rest too. So you know, that's something I'd be happy to share if there's an interest.
Speaker 2:Absolutely brutally practical tools. Well, if nothing else, I'm going to be taking notes and learning from you, so I'm sure our listeners will love it too. So we'll get that recorded sometime in the next few weeks and can't wait to air that for everybody tuning in. And until then, we will catch you guys at the next empowered by Hope podcast.
Speaker 1:You are capable, you are equipped and you are not alone. Together, we can do hard things for our children. If this episode connected with you and you want to hear more, be sure to hit the subscribe button. We'd 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 bears.